MD Anderson

View of Downtown Houston from MD Anderson Room

Thursday, September 29, 2016

We flew from Cincinnati Airport to George Bush International Airport in Houston, TX on a 2 hour 29 minute flight.  We had to pay more for the direct flight out of Cincinnati, but a one-stop flight was going to take between 5-6 hours to arrive.  I knew he could not and did not need to tolerate that long of a flight and/or transfers.  Everything went according to plan.  We had no problems at any time.  Todd had a little pain on the flight, but overall, it was event-free.  Once we arrived, we used Uber to get a ride to MD Anderson.  I called Dr. Benton on the way to the ER to let him know we would be there soon. This was the plan, to go straight to the ER and have him admitted from there.  It took about 40 minutes, but our driver was able to drop us off right at the Emergency Room doors.   The ER was somewhat busy and a bit difficult to navigate with the wheelchair and all of our luggage.

It helped that I had all the registration for Todd done before we arrived.  At the time I was working on it by phone while Todd was in Soin, it was very frustrating.  I remember this process another time I had tried to get an appointment for Todd at MD Anderson in the past, before he got on AG221.  First, the doctor sets the appointment.  Then, MD Anderson calls to get all of your insurance information.  You have to be approved through a "financial clearance" department before your appointment is confirmed.  This part is the real pain.  There were some discrepancies between what our insurance company was telling us and what MD Anderson had found out.  When I called our Anthem Blue Cross and Blue Shield Plan, they said Dr. Benton and MD Anderson were both "in-network."  This meant we would not have to pay anything out-of-pocket because we  have already met our maximum out-of-pocket expenses for the year.  However, MD Anderson's financial clearance department said they had no working relationship with our provider since it was through the Affordable Care Act and not from the State of Texas.  They said they would accept our insurance, but only as an "out-of-network" provider.  We had to agree that we would pay any difference in the insurance company's maximum payment benefit and what the hospital and other providers charged.  So, for example, if the insurance company only allows for $400 for lab work, and MD Anderson charges $600, we would have to pay the difference.  This could add up!  It basically allows MD Anderson to charge whatever they want for their services, without the insurance company having the power to say that is too much or you were contracted to accept our payment of $400 as a maximum charge.  This is where the health insurance system in this country is whack!  So, yes MD Anderson is probably one of the best cancer hospitals in America, but you have to pay for the privilege to be a patient there. There is no check and balance system in place when the insurance provider cannot protest that the hospital is charging too much for services.  Who knows what our medical bills will be after this is all said and done, but how can anyone put a price on life?  I can't.  Todd's life is more valuable to me than any amount of money!

Back to the ER. It was late in the day, about 5:30 p.m., so they were anticipating one or two discharges.  They got Todd a bed in the hallway until a room opened up.  Our nurse was Jesse, and he started getting us settled in.  We had to wait for the ER Doctor, Dr. Veils, to come in and evaluate Todd and give some preliminary orders. I provided her with the medical discharge papers and recap written up by Dr. Kim the hospitalist at Soin.  This was very helpful as it gave a quick review of Todd's history with the MDS and what happened at Soin.  She questioned Todd about his family history, whether there was an any cancer in the family, what he used to do for a living, etc.  They put a pick-line in  his left arm, since they are not allowed to use his port until it is evaluated.  They drew the CBC, did a chest x-ray of the port, performed a EKG, and Dr. Veil had to do an exam of a hemorrhoid that had become enlarged due to all the diuretics they gave Todd at Soin.  While this may not seem like a big deal, it is a very dangerous situation.  Hemorrhoids can become septic in no time.  In fact, it happened to Andy, a man who was next to Todd in the transplant floor at Cleveland Clinic in 2014.  He became infected with C-diff (Clostridium difficile), a bacterial infection that causes severe diarrhea, caused from antibiotic use or spread in hospitals from lack of washing hands, etc.  People with weakened immune systems, like chemotherapy and cancer patients are more susceptible.(C. difficile, 2016).  It quickly caused sepsis and they were unable to use Lasix to drain all the fluids his body started to accumulate when his kidneys began to fail.  I am so sorry to say that Andy lost his life as a result.  He had a loving family, which I was blessed to get to know while we were there. 

They approved his port for use, but kept the pick line in his arm so they could use it for fluids and use the port the for blood draws and transfusions. 

After most of these initial tests were done, we were pleased to learn that Todd did not require any transfusions when we arrived.  The doctors at Soin only had time to give him one unit of platelets instead of two before we had to leave for our flight; we thought he might need the other unit when we got there.  The best part of the ER visit was getting to meet Dr. Benton.  He is awesome!!!  I love his bedside manner, his intelligence, and his relaxed laid-back personality! He hit us with about 7 or 8 good options.  He told us straight out that the AG881 Study was closed here too for now.  They have no slots open and won't have them for about 6 weeks.  He thought this was a good idea, but not necessarily his first option.  His first option is to use a combination therapy of chemotherapy induction to get the cancer into remission.  This could take several weeks.  There were other trial options on or off protocol that could also be used, but he wanted to see what the genetic panel and the bone marrow results showed first, if he can get them back early in the week.  He would like to do the chemotherapy with the intention of doing a second transplant.  He wants to go for the "curative" treatment.  We explained our reservations to the idea of a second transplant:  GVHD, relapse or worse, but he tried to assure us that it was the only known curative treatment available today and he thought Todd would be a good candidate.

We had to stay in the ER Room until about 1:30 a.m. when they finally had a room in the hospital for Todd.  Yes, until then, they were full!  He was admitted on the lymphoma floor, because there were none available on either of the leukemia floors.  It was very comfortable.  I had a murphy bed to sleep on and was finally able to get some sleep, even though they continued to do some tests throughout the night.  One of the weirdest things that happened is when his nurse asked what medications he was on, and could she see the bottles of medication we brought with us. She said there was no since in paying for more medication, if he already had some.   I thought she just wanted to look at the dosage and amounts, but they "confiscated" all his prescription medication!  Without asking!  Two nurses started recording the type of drug and emptied each bottle counting every pill.  We could not figure out what was going on and we were half a sleep.  The next thing I know they had packed up all his medication and made him sign a receipt saying they were giving all the medication to the pharmacy to be stored, and that if we wanted it back, we would have to take the receipt to the out-patient pharmacy and pick it up.  Really?  We had nothing to hide, but wow, were they worried about someone stealing it or patients taking it in addition to what is being prescribed?  Is this where the prescription epidemic has led us?  I later asked the nurse on the leukemia floor about his procedure.  She said they do it so a patient doesn't lose there medications and that we should have been better informed.

Todd in his first room on the Lymphoma Floor.

Friday, September 30, 2016

His early morning CBC showed his hemoglobin at 7.7, which meant he needed 2 units of blood.  Platelets were also low, so he needed platelets too.  Someone from the Research Department came in and asked Todd to consent to allow some extra blood or marrow samples to be used for research purposes.  He has always agreed to this, even at the Cleveland Clinic.  Anything we can do to advance the effort for a cure or better treatment, we are all for!  Almost all of his tests were done in his room.  After 26 bone marrow biopsies, I finally got to watch one take place.  They took several slides of aspirate and then then they used a mini hand corkscrew-like tool to extract the small piece of marrow tissue.   They also brought a machine into the room to do his echocardiogram.  They swabbed his hemorrhoid for testing, took blood for cultures, his type and screen for transfusions, and for the multi-level genetic mutation panel. This one is much more detailed than any other he has ever had in the past.  The only test they had to take him out of the room to do was the CT scan of his spleen.  I felt bad for him.  Just after I ordered his breakfast, they said he couldn't eat because he had to drink the contrast for the scan.  He finally ate afterwards.

Speaking of breakfast, the food here has been very good for hospital food.  It is very helpful too that they provide a guest menu with prices on it so that I can order too.  It is just as reasonable to buy food here than it is going down to the cafeteria.  I have more choices and it comes up the same time Todd's food comes.  I can eat from $3-$13, depending on how much I want.  The only thing I could complain about is the lack of coffee!  At the Cleveland Clinic, the family kitchen area had free coffee, hot chocolate, and tea.  Here the coffee machine is like a vending machine where you have to pay $1.50 for a small cup of coffee.  So, luckily, they have like 4 Starbucks (or at least that is about how many I found in my limited exploration).  I have been going down in the morning and getting my $2.11 medium cup of coffee!  I prefer this delicious option to vending machine coffee! 

I have had a hard time getting a social worker to come up and see me. The sent one to me in the ER, but it was late and I really didn't have my questions ready then.  I needed to learn where to find laundry facilities, a place to shower, store food, etc.  Someone showed me the family kitchen and wrote down where I could find the hair salon and laundry.  The hair salon is for patients only and is run by volunteers.  The laundry facility is on another floor of the hospital tower and has pay-for-laundry machines.  The price is very reasonable; 75 cents per load on the washer and the dryer.  I would likely have to plan on staying there until my laundry was done though.  Things here must be different than Ohio hospitals because they all looked at me like I was crazy when I asked where I could shower.  It has always been my experience that family members were not allowed to use the patient's bathroom facilities.  Here, they are like, you can use his bathroom and shower, duh!  At the Cleveland Clinic, they had a family shower area and a free laundry room, but it only had one washer and dryer for the entire floor; sometimes, you had to wait your turn. 

Saturday, October 1, 2016

We were hoping to get the preliminary bone marrow biopsy results back.  Unfortunately, they were doing a second exam of the results and they were hesitant to release them yet.  The doctor thought there must be something questionable in the results, like calling his disease AML or blasts being at 20% or not. 

His blood counts this day were: Whites .6; Platelets 12,000; Hemoglobin 7.7.  It looks like he has become officially neutropenic with ANCs .29. Blasts in the blood were at 19%.  He received 2 units of blood and platelets. 

The doctor rounding this day, an associate of Dr. Benton, gave us a horrible shock when he came in guns blazing asking us: Why did we come here?  What treatment did we want to do? Did we come only for the AG881?- because that was closed.  We answered, well Dr. Benton gave us several options, but we didn't come just for the AG881.  He said that they would likely discharge us next week, and we would just be coming in for outpatient visits.  What???  This was news to us!  I said well he is requiring transfusions every few days, and what about his spleen?  He answered, we give transfusions outpatients and I could bring Todd in every Monday, Wednesday, and Thursday.  The spleen was still very large, about 28 centimeters, but if they could manage Todd's pain with oral pain medication, etc.  He would be fine.  He said you know you would have to stay here for at least the first round of treatment.  I said yes, we were told that yesterday by Dr. Benton.  UGH! 

I was in shock!  I told him that Dr. Benton hadn't said anything about discharging him so soon.  I'm thinking where is this doctor coming from? Why the inquisition?  I said well, we need to speak to a social worker right away because we flew in; we have no car; no place to stay and had not planned on needing all this information so soon. 

I was so relieved when Dr. Benton came in a few hours later and said that doctor didn't know the situation and wasn't really up to speed on Todd's case, that he had only been able to send him a few emails.  He had no intention of releasing Todd to outpatient care.  What a relief!  I knew that it would be so hard to drag Todd to and from the hospital several days a week in his current condition. 

He begin to discuss Todd's options again in earnest.  His first inclination was to start Todd on a chemo regimen to get his cancer into remission with the intention of having a second bone marrow transplant.  If we are agreeable to this.  We told him the first night that we weren't too excited to do the transplant after the first experience with the quick relapse and poor changes of success for a second transplant with resistant disease.   He said, he understood our hesitation then, but that now we have 15+ months of additional history of the cancer responding to treatment through the AG221 to consider.  This reveals to him more of the "biology" of the disease, that it responded well to a single-agent drug.  He feels that he would respond to a multi-agent treatment, which is what the research is all leaning towards now.  If, we still don't want to do a second transplant, we could look at therapies or trials available to him.  He called these "bridge" therapies because it would likely be another short-term fix to bridge him to the next available treatment in the future.  The main problem with going from one bridge therapy to the next is that when it would stop working, he would likely end up relapsing with the cancer progressing rapidly.  He also stated that it gets harder to put the disease in remission each time there is a relapse and the remissions would become shorter in duration.  It was his opinion that even now, after chemotherapy, the remission would likely only last 6 months or less.

If we went the transplant route, we could have it done here or at the Cleveland Clinic.  He said
that Dr. Hamilton would have to look at his list of donor options since they would not use a related donor again.  He said that she would likely recommend a full match if one was available, instead of just a half or haplo match, even though there is increasing evidence that these transplants are just as successful as full matches.  We asked about which would be best, doing the transplant here versus at the Cleveland Clinic.  Did they have different conditioning prior to transplant or different imonosuppression regimens after transplant than Cleveland?  He said that was a good question, and that it would be a good idea to bring in a bone marrow transplant doctor here as a second opinion consult to make recommendations. 

I told him my main reservation about a second transplant was the unknown mortality rate within the first year or two after transplant.  I was also worried about putting him through all the toxicity of the chemo prior to transplant and then just experiencing another relapse.  He said he didn't think the morality rate would be high.  His only real concern was relapse and GVHD (Graft versus Host Disease).  He said though, that even if the transplant wasn't successful, he would still have all the other trial options available.  I was surprised, and asked if he had a high grade GVHD, wouldn't that disqualify him?  He said, no not usually.  But, I do think we would have to wait a certain about of time after transplant to become eligible for some of the studies.  However, he wasn't concerned about this.

Other treatment options included a drug that targets the P53 genetic mutation we know he has.  Although this mutation can cause additional resistance to treatment, the cells are easier to target because they are marked very specifically.  He described these cells like bank robbers with masks on who robbed a bank, but continued to wear the same mask all the time after the robbery.  It obviously would make the robber easier to catch.  See: https://www.mdanderson.org/research/departments-labs-institutes/departments-divisions/leukemia/clinical-trials.html for a list of trials offered by MD Anderson for MDS and AML.

The other recommendations went by too quickly for me to write down or look into yet.  He did say that he contacted the drug company Agios to see if Todd could start the AG881 trial any sooner.  He said they may be able to move up the next cohort to 4 weeks instead of 6, but it wasn't certain.  This still may not be soon enough for Todd.

Once the genetic mutation panel and bone marrow biopsy results are back, they will have a better opportunity to match treatment options to the specific kind of markers and mutations that Todd has tested positive for, including the JAK2 mutation I discussed in the last post. 

The good news is, we have more options here than anywhere else!  We have a great doctor and we feel very confident that we are in the right place. 

We were moved from the Lymphoma floor to one of the Leukemia Floors right after dinner about 5:45p.m.  Todd's Room and address here is as follows:

MD Anderson Cancer Hospital, c/o Todd Cade Room #G1682, 1515 Holcombe Blvd, Houston, TX 77030

 Remember not to send or bring any plants or flesh flowers as they are not allowed on the floor. 

Sunday, October 2, 2016.

Not much going on today.  Todd's counts were a bit better: Whites 1.0; Hemoglobin 9.5, and Platelets 16,000; with ANCs at .45.  Sadly, there was 23% blasts in the peripheral blood.  No transfusions were needed, however, he started having a nosebleed whenever he stood or sat up, so they went ahead and gave him platelets to help with this. 

I will blog more, when I know more.  I want to close with special thanks to those who have helped us get here financially (you know who you are).  We also want to thank all of the prayer warriors out there lifting us up to our Heavenly Father.  Also, special thanks to Dana Willet, for driving 3 hours up and 3 hours back from the Austin area to visit with us.  And to my high school friend, Kim Bird for driving 4 hours up and back from the Ft Worth area to bring me some supplies, meet Todd, and lift up our spirits.  It takes a special kind of person to drive these long distances to visit! 

References:

Mayo Clinic Staff.  June 18, 2016. "C. difficile infection." Mayo Clinic.  Web.  Retrieved from:  http://www.mayoclinic.org/diseases-conditions/c-difficile/home/ovc-20202264

CELEBRATING 25 YEAR WEDDING ANNIVERSARY AND GETTING TO NEW YORK

Today is our 25th Wedding Anniversary
September 21, 1991- 2016

PERSONAL NOTE:

It was a whirlwind courtship, but today we celebrate 25 years of a life together that has brought us many blessings and challenges. I would like to wish we could have another 25 years together, but none of us are guaranteed a tomorrow. No woman could ask for a better husband than Todd. He worked hard and has always devoted his life to God and his family. Cherishing every day and praying we have many more years together. So thankful our marriage was blessed with the greatest 3 kids we could ever hope for.

GETTING TO NEW YORK FOR TREATMENT:

Trying to get Todd to New York on a budget is proving challenging.  I’ve done it once before, and I’m going to have to do it often if he gets accepted in the trial for AG881 at Memorial Sloan Kettering (MSK). 

At first, the receptionist for Dr. Stein at MSK told me that Todd would have to come in two separate dates: one for the consult and another for the screening and by the way, Dr. Stein was only in on Mondays and Thursdays.  I told her that we had seen the doctor before in a similar situation when he was getting screened for AG221, and that we were able to have back to back appointments, one day for the consult and the next day for the screening so that we could do it all in one trip.  I explained that we were coming from Ohio and why should we have to come on two separate occasions and have to schedule 4 flights instead of 2!    This was Thursday, September 15, 2016 when she called to schedule Todd’s first appointment set for Monday, September 26, 2016.  I called back the next day and tried to convince them to let us have too appointment dates back to back.  She said she would give the message to someone on Dr. Stein’s team.  I didn’t hear back from anyone that day, nor Monday morning.  So, I called back Monday and reiterated the circumstances and said I never heard from anyone.  She said she would send out another message and have the doctor or someone on his team call me back.  His trial assistant, Emily called back later that afternoon and said of course we only needed to make one trip and that we could do everything in one day!  She said they make this exception for patients who travel long distances!  Hello?  Why didn’t the office person tell me this to begin with? 

There are still a few concerns about being able to keep the Monday morning appointment there.  First, it is at 9:40 a.m.!  That means we would have to get up very early and drive to Cincinnati or Columbus to get on a Corporate Angel Network Flight (CAN), if one is available and can get us there that early with a 45 minute drive into the city!  Corporate Angel Network cannot request a flight until 3 days prior to departure.  We can’t go up the night before because none of the corporations on the network fly on the weekend.  I won’t hear back from CAN until Thursday or Friday at the earliest to see if they are able to secure us a flight.

Second, MSK is waiting to confirm that they can add Todd to the new cohort of the trial which opens on that day, Monday, September 26.  They have been reviewing the current cohort and there can be delays if there are any concerns.  Emily is supposed to call me back and let me the status of this.

COHORT:  A group of persons or animals of the same species with a common characteristic, set of  characteristics, or exposure, who are followed for the incidence of new diseases or events as in a cohort for a prospective study. (Segen’s Medical Dictionary, 2011).

Third, getting lodging once everything is confirmed is also on hold.  I hate to book a hotel room until we get the first two confirmations.  I tried to get the social worker at MSK to work with the Hope Lodge there in New York City to reserve us a room.  However, after hearing back from the social worker today, we were informed that we would need a minimum stay of 3 days of “treatment” before we would meet the criteria for staying.  Since we only need one night this time, it’s a no go.  I did tell her that we may need to stay 3 days later, once the trial starts, but it won’t be often. 

From what I gleamed from Emily, Todd would have to start the trial with a Day -3 scenario, like he did with the AG221 trial.  This is the part where they experiment taking the medication with or without food and then do hourly blood draws for 10 hours.  I remember these days from the last trial with dread!  Talk about a long day, especially for Todd, in his current condition of severe fatigue.  After the first week, we would have to return weekly for the first month.  After the first month, appointments every two weeks for the first 4 months.  Then, just monthly appointments!  This is a much easier schedule than with the AG221 study at Cleveland where Todd had appointments for every two weeks for the first year!  That was crazy; but, you do whatever it takes!  Todd was doing so well on the drug, we hated to complain!

None of this preparation can happen fast enough. Todd continues to struggle with fatigue and lack of appetite.  The local oncologist wanted Todd to start coming in the day before transfusions to get the CBC and type and screen. This is supposed to give the blood bank a day to obtain and prepare the blood products ahead of time.  Plus, they have never liked the idea of making Todd wait for hours for the blood to get to Soin from the blood bank. 

Dr. Hamilton, in Cleveland, did not want Todd to wait 7 days to get a CBC because his hemoglobin was so low the last time they waited a week.  Arrangements were made for him to go in late Monday morning, September 19, to get the CBC and type and screen done and to have blood drawn for a special myelo-mutation panel that would identify all genetic mutations, not just the IDH-1 or IDH-2.  Dr. Hamilton wants to use this as a tool for finding any other studies that Todd would be eligible for, based on the mutations he has.

The results of the CBC were disappointing.  Less than 5 days from his last platelet and blood transfusions, his counts were so low that he needed another 2 units of blood and 1 unit platelets again!  His hemoglobin was at 7.5; platelets at 12,000; Whites at 1.1; and ANCS at 0.6.  They ordered his blood products for the transfusions set up for this morning, Tuesday, September 20, 2016 at 7:30 a.m.!  This is very early for Todd.  It took the nurses a good hour and half to get him situated in his Universal Care Room and have the blood brought in.  He didn’t have to be there until 6 or 7 pm today, but he was still there until 2:10 p.m.  It still took him about 7 hours to get the transfusions.  I’m not sure if it was really any better for him to come in two days, but I guess it was better for the hospital and staff and maybe the blood bank, I don’t know.

I think we have decided to put our house back on the market again.  A realtor came to the house and we will be in repair and clean-out mode now for some time.  Apparently, the inventory for houses in our area is low, but the turnaround time from listing to selling is averaging almost 300 days according to her graph report. I can’t imagine keeping everything “show-ready” for up to 10 months!  The whole prospect feels every inch of me with apprehension, but I’m doing it for Todd’s peace of mind.  Less stress in keeping up our big house and its expenses.  He worries about the future and my ability to keep everything up on my own.  Goodwill, Beavercreek Bargains, Plato’s Closet, here we come!  I know it needs done; I just don’t have the mental or physical energy and the heart to do what it takes.  I can’t give in to sentiment.  Even more depressing is finding somewhere to move that isn’t a major wreck.  God Help Us!  I mean that sincerely and earnestly. 

NEW DEVELOPMENTS:

This news is crazy, so hang on.  I received a call late yesterday from Emily, Dr. Stein’s trial assistant at MSK.  The meeting that the trial study team was supposed to have with the drug company on Monday, September 19, was unexpectedly postponed for a week with no explanation.  It just wasn’t the meeting at MKS that was postponed, but the meetings at the other four U.S. trial study locations too. 

The meeting was supposed to cover the results of the first cohort of the Phase I trial of AG881, which was a dose expansion phase, defined as “A progressive increase in the strength of any treatment (e.g. a drug or radiation dose), to improve its tolerability to maximize it effect.”  (Free Dictionary 2009).

This is when they give different patients different amounts of the drug: 50 mg, 100 mg, 200 mg, 400 mg, and 600 mg until the maximum tolerated dose is established.

MAXIMUM TOLERATED DOSE:The highest drug dose that can be given without causing adverse side effects in most recipients.  (Segan’s Medical Dictionary, 2011).

The second cohort of a Phase I, is usually a patient expansion.  We are hoping to get Todd a slot in this part of the trial.  Now everything is on HOLD!  The appointment for Monday, September 26, 2016 with Dr. Stein has been cancelled too.  We are hoping to go instead on Thursday, September 29, 2016, IF the news and instructions from the drug company from the rescheduled meeting that Monday allows new enrollees. 

I guess speculating doesn’t do much good, but I can't help it. This could be good news or bad news.  They could have reached the maximum tolerated dose and have decided to go on to Phase II.  This would be good news since Todd would not have to be exposed to dangerously high dosages, but it could take weeks or maybe months to get the new Phase up and running.  The worst case scenario would be that the drug didn’t work at any dose for the initial set of patients, but this would be highly unusual.  The best news would be that they just needed to reschedule the meetings for a week and the drug company will call the Trial Centers/Hospitals and let them start pre-screening for an additional number of new patients for the next cohort or Phase. 

The problem for Todd is time.  He needs to get on a treatment soon.  The two-week “wash-out” period of being drug-free in preparation of starting a trial will end tomorrow, Thursday, September 22.  Even though I feel desperate to get him on some kind of treatment, we can’t jeopardize ruining this wash-out period and not being ready when next trial slot opens up. 

So, we wait.  Wait to hear from Dr. Stein's team and continue to get Todd any transfusions whenever he needs them.  Prayers for the situation to be resolved and settled would be appreciated, as well as for protection for Todd against getting an infection or virus.  

References:

cohort. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/cohort

dose escalation. (n.d.) Medical Dictionary. (2009). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/dose+escalation

maximum tolerable dose. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/maximum+tolerable+dose

DESPERATE FOR A NEW TREATMENT PLAN

We finally received the test results this week that the doctors needed to begin discussing a game plan of treatment for Todd.  I was getting anxious to know the preliminary bone marrow biopsy results, so I called Dr. Hamilton's office at the Cleveland Clinic on Tuesday, September 13, 2016, to ask if she had got them back from the lab yet .  They are usually back the following Friday or Monday after the biopsy on Wednesday. I was told that the labs had been running behind, but they would check with Dr. Hamilton.  She called me around 12:00 that afternoon with the news:  His blasts counts were up to 8%.  Not the news we wanted to hear.  I was glad they weren't higher, but disappointed they had jumped from <1% in July to 8% now!  The air conditioning in our office had been out; it was about 80 degrees in there.  So, when I got this news, I had to sit down.  I felt dizzy and faint.  I was already overheated, needed to eat, and then got this news.  I was shaken.

I asked the doctor if she thought the blast counts would continue to jump up that much again (desperate question), but she of course she wasn't sure what they would do, but she tried to reassure me that she didn't think they would skyrocket past the 20% criteria classification of Acute Myeloid Leukemia (AML), but there are no guarantees with cancer.  She said that these results confirmed what we all had suspected: the cancer was no longer responding to the AG221.  I had asked her at the last appointment if it was possible that the drug could still keep his blast counts down even though there was no hematological response in the blood counts. She said, it was possible, but she didn't think it was likely, nor did she think that it would help him to continue taking it for that hope only.  It wouldn't make that much of a difference.  So, the biopsy results confirmed this: continuing the drug was not keeping the blast counts down anymore either.

At this point in the day, she still had not received the genetic panel results back from the specialty lab. She still wanted to wait until she got these back and spoke with a few colleagues before making a treatment recommendation.  She also said that they were still waiting to hear back from Celgene, the drug company of the medication Revlimid, regarding an estimate of how much we would have to pay for the drug under our current insurance. I brought up the option of Vidaza, which Todd has been on before to reduce the blast cells, and she confirmed that this may still be an option.

Dr. Hamilton asked me if I wanted to tell Todd the biopsy results or if I wanted her to call him.  I was very busy at work, and wanted Todd to have the opportunity to ask any questions or discuss any concerns with her; so she called him and gave him the news.  We had a chance to talk on my lunch break and he said the blast counts being at 8% was about what he expected.  He was surprised it wasn't worse.  I tried to encourage him; we still had options and there is a team of doctors working on getting a new treatment regimen together for him.  We would go or do whatever it takes!

He had been extremely tired since his last transfusion of one unit of blood at the Cleveland Clinic last Wednesday, September 7, 2016.  This week's appointment on September 14, was at the local oncologist's office for a CBC to see if he needed a transfusion.  I knew he was weak, but he refused a wheelchair and walked in on his own.  By the time we got back to the treatment area, he felt like he was going to pass out.  They hurried and got him into a bed and covered him with warm blankets and placed a cool washcloth on his forehead while they prepped his port for the blood draw.  I got him a Boost shake to drink, because he still hasn't had much of an appetite.  While waiting for the CBC results to come back, I called Sam, the trial nurse at Cleveland Clinic to see if they had received word from the genetic mutation panel because the local oncologist had told Todd that they received them the day before.

Cleveland had received the results, but they were so vague that no one really understood them.  Dr. Hamilton had called and asked the pathologist to explain them to her.  Of course, he hadn't called her back yet.  The results looked positive for the IDH2 mutation, which he had prior to treatment with AG221, but they were not sure about the IDH1 mutation.  We started discussing the trial of AG881 in New York, that Dr. Eytan Stein had mentioned.  Originally, I thought Todd needed to have both mutations before he met the criteria for the trial, however, after researching, it only needed to be one or both.  Todd has read a lot about the drug and the drug company AGIOS.  From his understanding AG881 was only a combination of AG221 for IDH2 and AG120 for IDH1.  If he didn't have the IDH1, the AG881 would be worthless, since we knew his cancer had stopped responding to the AG221.  This dashed my hopes of this trial.  I found out later anyway, that he DID NOT HAVE the IDH1 genetic mutation, so this option was seemed out.

Once we got the CBC results back, it was easy to understand why Todd was feeling so weak.  His hemoglobin had gone from 8.3 plus one unit of blood last Wednesday to 6.8 this Wednesday! At first the nurse said his hemoglobin was 6.2 and his platelets were in the teens.  She said the doctor wanted to know if he wanted 1 unit or 2 units of blood.  We both freaked out and said 2!  Of course!  This was the lowest his hemoglobin has been in over a year!  I don't know if it was that low when he was in the hospital last October with the pneumonia!  They usually always give him 2 units if the hemoglobin is below 8.  Todd and I began to question what she had told us.  Maybe she had made a mistake.  Maybe the hemoglobin was at 8.2 not 6.2, then the question of only giving one unit for being under 8.5 would make sense.  So I asked her to double check the results.  We looked at the printed results together.  The hemoglobin was 6.8, platelets at 13,000, whites at 1.2 and ANCs at .6!!!  Every time I see such low numbers, I can't stop the expletive that comes out of mouth in disbelief and anger.  There was no denying it.  These numbers sucked.

When we told Todd the actual numbers, he was in disbelief too.  He began to worry that if his counts were this bad, his blast counts in the marrow had probably increased too.  I wheeled him down to Universal Care and they got him in a room right away.  The nurses there are so awesome!  They really care about the patient and the family.  They always take my phone number so that when I leave to go into work, they can contact me with any changes or concerns.  We've been pretty happy with his care at Soin Medical Center.  They are always worried about how long it takes Todd to get the blood products and the transfusion process, but we have always understood that it takes time and don't mind the wait at all. We always get out of the hospital faster than they predict.  This day, Todd was finished by 6:00 p.m.  I was happy that our daughter Abby was able to come sit with him in his room to help pass the time.  It is hard for me to go into work while he is there, but I know he is in good hands and that I can be there in about 20 minutes if I'm needed.  If anyone would like to come sit with him during the transfusion process, it would be appreciated.  In the future, however, they want him to come in a day early to get his CBC and type and screen and then have the transfusions scheduled for the next day so that they can order the blood products ahead of time and shorten his wait time.  I'm not sure if this is really that helpful because he will have to get up early and go to the hospital two days instead of one, but we are willing to try it.

NEWS FLASH:

This is how fast and stressful everything changes.  While typing this post, I received a call from his transplant doctor, Dr. Hamilton, who finally had her recommendation for treatment to discuss with me.  She had already talked to Todd, but I always have a lot of questions to ask, so she graciously reaches out to me.  She had discussed Todd's case with the other doctors in the Leukemia/Oncology/Transplant area, her colleagues at University Hospitals in Cleveland, and Dr. Eytan Stein at Memorial Sloan Kettering in New York City.

I was shocked to learn that her recommendation was the AG881 Drug Trial at Memorial Sloan Kettering.  I thought this option was OUT!  Apparently, this drug is not what we thought it was, instead, it is a "souped-up, second generation"version of the AG221 he was on.   I was leaning toward the tried and proven treatments or "standard of care" treatments already available (i.e Revlimid and Vidaza) before hearing this.  When I brought this up, she said that although Todd had seen some response to Vidaza in the past, it didn't help much the last time he was on it after his failed transplant. It lowered his blast count some, but it did not help with this blood counts at all.  Therefore, she really didn't consider this a "positive response" to the drug.  With Revlimid, we are limited to it helping the anemia or Red Blood cells only.  Todd's other counts are already dangerously low, and this drug is known to lower platelets, which he cannot afford to have happen since they are already so low he has to get platelet transfusions.

She didn't know much about how AG881 worked or what it contained, but recommended we consult with Dr. Stein.  In her opinion, this is the best option to help increase all three blood counts increase and decrease the blast counts.  We discussed that the treatment options are getting thin.  Her colleagues at University Hospital suggested a second transplant, which Dr. Hamilton feels is still an option we really need to seriously consider.  I told her that I couldn't speak for Todd completely, but that in general we did not consider this a good option; instead, we consider this a last resort after we have exhausted all other options.  I told her I didn't know if we were ready to go the the "hell" that a transplant inflicts.  I told her that personally, I found the option scary.  Not only did it not have a high success rate, but if it did work, then Todd would have to face the possibility of getting Graft v. Host Disease that could be detrimental.  She reiterated that this is the ONLY CURATIVE OPTION.  That every other option is just temporary.  They would obviously use a different donor, but I wasn't impressed with the long-term success rates of bone marrow transplants.  I guess we just need to be careful not to wait too long to take this option; he needs to be healthy enough for a transplant.

This news, that we would have to go to New York, was not upsetting in itself.  However, I called Todd back after my conversation with Dr. Hamilton, and his mind was racing ahead of all the implications and changes in our lives that would be necessary to pursue this trial treatment.  This would mean extensive travel: every week for the first month, then every two weeks thereafter.  We would need resources to go and he would need me to go with him.  My ability to work full-time could be in jeopardy, which means keeping our house would be impossible.  I didn't want to jump too far ahead, and I think we would be smart just to take things a day or week at a time.  We really need to speak with Dr. Stein to see how feasible getting on the study would be.

Putting the house on the market again would be stressful.  I'm not sure I can handle all the work involved.  This time it would be definite; we would keep it on the market until it sold!  I would need lots of help: cleaning out the house, getting rid of stuff we couldn't take with us, boxing up, keeping the house immaculately clean and ready to show, and then finding a new place, preferably one that would be move-in ready.  This is when I broke down into tears.  I know our house is often too much to take care of. I have been mowing the grass and doing almost all the cleaning.  With Lewis back at college and Ellie back in school and sports, and Todd unable to get out of bed, most of the chores are left to me.

Please be in prayer for wisdom for us and the doctors.  That travel arrangements would fall into place.  I've already contacted the Corporate Angel Network about arranging a potential flight and the Hope Lodge in New York City to see if we could stay there instead of a hotel.

Todd's cough is getting worse and he is now limping.  It seems like when his counts get low, certain areas get inflamed, and this time it is his foot again.  He still doesn't have much of an appetite.  The doctor said this was likely from the MDS itself.  Getting him to eat regularly requires great effort.  He has been trying to drink his Boost shakes when he can't bring himself to eat.

Thanks goes out to my parents who are a pillar of strength and help.  My dad (age 69 with congestive heart failure!) has been helping me with yard work.  Todd's mom is still bringing food, but even she is having a hard time walking.  Pastor Chuck Moore at Hillside Chapel has been faithful in staying in touch and visiting Todd.  Our neighbors Dan and Sharon have also been very supportive.

NEEDS:  I hate this part, but we do have needs.  We have a few dead trees in the yard that need to come down.  Neither Todd nor my Dad are able to do this.  If anyone can refer us to someone who could give us a reasonable rate to take these down, it would be greatly appreciated.  I could really use some mulch in the front flower beds, if anyone has extra mulch or has the time to chip and shred our tree branches for mulch, that would be appreciated.  I probably need to have a garage sale, which is a lot of work!  I would have to do it on a Saturday when I am off work, but I might need help preparing for it.

Of course, I always worry about Todd being home all day alone. When I'm not there, he doesn't eat. It would be great if someone could tempt him by bringing food over and sitting with him for a short visit.  He really doesn't feel like going out to eat, as he barely feels like getting out of the house at all.

He will have a CBC drawn at Soin on Monday, September 19, 2016, as they don't want to wait a full week this time to see if he needs a transfusion.

Also, on September 21, we will be celebrating our 25th Wedding Anniversary.  I hate that he is so sick.  The celebration will likely be low key at home. I'm just thankful he won't be in the hospital and that we made it successfully to such a significant milestone!

Thank you all for the love and support.

FOR MORE INFORMATION:

AG881 General Trial Information: https://clinicaltrials.gov/ct2/show/NCT02481154

AG881 Trial at Memorial Sloan Kettering: https://www.mskcc.org/cancer-care/clinical-trials/15-252

Success of AG221 (showing average response time of 15.7 months):
http://annonc.oxfordjournals.org/content/27/4/599

AG221 Trial Comes To An End

T-shirts given to blood donors during the Battle of the Badges, Beavercreek, Ohio. Donors were entered into a drawing for a trip to Alaska-therefore the Moose theme on the T-shirt!

Since the last post, Todd had another blood transfusion and a platelet transfusion on Wednesday August 31, 2016. His platelets were at 28,000, not below the prescribed < 10,000 to get a platelet transfusion, but he got platelets to boost his counts prior to a much needed dentist appointment to fill a few cavities the following day, Thursday, September 1. His hemoglobin was back down to 7.5 just about 9 days after his last transfusion on August 22, 2016, when he was transfused with 2 units of blood.

Our local fire and police department was sponsoring an annual blood donation drive called the "Battle of the Badges" on August 29, 2016, where blood donors show up for the police department or fire department to see which group can donate the most blood. I decided to donate for the first time in my life!  I've wanted to donate or organize a drive ever since Todd was first diagnosed with MDS and also when he was transfusion dependent the Spring of 2015, but I never did. For this event, I scheduled a time to donate after I got off work. I learned so much about the process:

• you need to drink lots of water the day of donation; 
• it takes about an hour to register and go through the screening process;
• there is a list of medications, mostly blood thinners, that should not be taken so many hours prior to donating;
• I was worried that I would be disallowed to donate after checking "yes" to having traveled outside the U.S. in the past 3 years, but once I talked with the nurse during screening, she said they were really only concerned about travel outside in the past year in certain countries, especially extended stays. We had gone to the Dominican Republic in the spring of 2014, prior to Todd's chemo and transplant. (I had to look it up, it seemed like longer ago than that!). 
•  They also had to prick my finger and test my hemoglobin. Mine was at 12.5 the minimum needed to donate. (Low end of normal but I passed!)
• I did not eat before I went and I guess that is not desirable!  Especially for a first time donor. They wanted me to go eat the proffered chili, cookies, and orange juice before donating, but I was worried about getting  home to Todd and Ellie who also needed to eat. So, instead, she insisted I ate something before I left.  She actually gave me permission to "pig out" when I got home! See: First time donors
• since 2007, women who have had children are no longer allowed to donate just platelets unless they have been grandfathered in, meaning they have been already a regular platelet donor prior to this date.   See: http://givingblood.org/about-blood/blood-testing.aspx
• The actual donation only takes about 15 minutes.

Everything went great! The nurses said they had a great turnout and they made sure to tell each donor that their donation could save 3 lives! They can separate your pint of donated blood into platelets, red cells, and plasma.  I was so happy to see all the selfless people who were there to donate, knowing Todd was needing 1-2 units almost every week, that I was ready to cry tears of joy!  The nurses also thanked each person for their donation.  I personally wanted to thank each donor too!!!!  The whole experience was so touching to me knowing Todd is needing almost weekly transfusions, that now I want to organize a blood drive in his honor!  Todd would not receive the exact blood donated, but it would go to our community blood bank, where Soin Medical Center gets their supply.  Will those who are local begin to consider donating?  I pray you will!   Stay tuned.  In the meantime, check out this link: Red Cross Blood Donor Eligibility Criteria

"Although an estimated 38 percent of the U.S. population is eligible to donate blood at any given time, less than 10% of that eligible population actually do each year."

-The American National Red Cross. 2016

  
Cleveland Clinic Trial Appointment Cycle 19, Day 1

Today's appointment at the Cleveland Clinic for his regular trial appointment and treatment was rushed. Since Monday was Labor Day,  many of the patients that had appointments for that day were deferred to today. The day started out unsettling.  First, we were told that the person scheduled to do his bone marrow biopsy called in sick. So, they were afraid they were going to have to reschedule it for another day! I'm glad the sick staff member stayed home, but I was upset that Todd may not be able to get the biopsy today!  I told Sam, his trial nurse, that any other time it would not have been a big deal, but there was so much riding on the results of this biopsy , i.e.  pursuing another treatment options, that I really didn't want it put-off nor for us to have to return in the next few days. She understood and said she would see what she could do. We had to wait about an hour to get labs and another hour to get into a treatment room. Unlike his local office, they can type and screen him for transfusion during his lab appointment, so this saved us some time.  After running behind two hours from all the waiting, we had doctors, nurses, and the pulmonary technician, all trying to come into his treatment room during his transfusion. It was crazy. 

His CBC showed his hemoglobin at 8.3, platelets at 27,000, Whites at .86 and ANCs at .67 (hovering close to neutropenia .5).  There was some real concern about the low white count and ANCs knowing that these low counts make him more susceptible to infections. They decided to give him one unit of blood since he was below 8.5 and probably would not be able to make it until next Wednesday to get a transfusion, when he goes to the local oncologist.  They were also concerned that if he had not received platelets last week that he would have likely would have needed them today. 

Luckily, Sam was able to get his bone marrow biopsy scheduled for around 3:00 in the afternoon. He normally doesn't take the "pre-meds" before the procedure, since he has had so many biopsies and knows what to expect, but today he took them. 

Unfortunately though, the results of the genetic blood tests done last week had not come back for review. So, we will have to wait until next week for both the biopsy results and the genetic panel.

In the meantime, Dr. Hamilton was fully convinced that the trial drug AG221, he has been on for the last 18 months, was no longer providing any response. In addition, the increased nausea and fatigue were only suppressing his appetite and desire to eat. He is still losing weight and there is no reason to continue the drug if it's not helping and prevents him from getting the nutrition he needs.

Another consideration for stopping the drug now is that it would allow a "wash out" required period of time off the drug before beginning a new trial or another treatment.

"For all these reasons, Todd was taken off  of the trial drug AG221 as of today."

For all these reasons, Todd was taken off of the trial drug AG221 as of today.  His nurse Sam will start the paperwork to close out his trial. I will be sad to lose Sam as Todd's nurse, since she only works with trial patients. She has been so good to us! She will be able to help us temporarily, until Todd starts a new treatment, and she has assured me that we will be in experienced hands in the future.

Todd wasn't able to get his Echo cardiogram appointment in today though; and it has to be done at the trial facility, meaning Cleveland Clinic. So, Sam was able to get an extension to have it done when we come back to discuss his test results and the start of a new treatment. 

So, after 18 months of visits for the trial, what will we do now?  How often will he need to go to the Cleveland Clinic? What are the treatment options?  As for visits to Dr Hamilton at CC, they will be scheduled as needed. No more mandatory 2 week blood draws, no more monthly EKGs, no more Echocardiograms and biopsies every two months. We were asked if Todd would be willing to allow these tests to continue for follow-up research purposes for trial study, but we haven't made a decision yet to commit to these since we live so far away and would be bound to do them. We will also lose the reimbursements for our expenses and hereafter will have to pay for any drugs needed that are on the market (like Revlimid) unless they can be obtained through another trial. In my last post, I mentioned the high cost of the drug Revlimid. Sam requested a quote from the drug company Celgene outlining the portion our current insurance would cover and/or what kind of assistance we could receive from them, but she hasn't heard back from them yet. I'm not sure it will matter, as Todd will be forced to apply for Medicare next month by Obamacare. Who knows what will be covered on Medicare and if we will have to purchase some kind of Medicare supplemental insurance to pay for what it won't cover. 

Other treatment options include going back on the monthly chemo drug Vidaza or maybe even a combination of Vidaza and Revlimid. Vidaza targets blast cells and Revlimid works by increasing red blood counts by working against the 5q cytogenetic chromosomal deletion that causes the anemia, and therefore the need for transfusions. 

 I feel like I need to start researching more trial options. Dr. Hamilton is still planning on talking to Dr. Stein and getting his insight after the genetic panel and biopsy results come back.  If Todd has both the IDH-1 and IDH-2 genetic mutations, he would be eligible for the trial drug AG881, which would be another option, albeit, a complicated one as we would have to travel to one of the 5 trial locations in the U.S. none of which are within a driving distance of less than 6 hours.

Todd will need to return to his local oncologist one week from today, September 24, 2016 to check blood counts.  Hopefully, we will have test results back and be able to make a consult appointment with Dr. Hamilton at the Cleveland Clinic too.

We appreciate your prayers and support.  I know Todd would deeply appreciate your phone calls. He lays around a lot because he is so tired and we rarely go out.  He really needs the encouragement.  He said that becoming transfusion dependent again brings back bad memories of when he was so sick after his failed transplant.  It is a vicious cycle of feeling his energy drain away more and more every day, until he can no longer put off another transfusion.  A special dish or treat might tempt him to eat for those who prefer to cook or bake.  A card, email, or text would also help boost his morale.  If you prefer to visit, please contact us first.  We ask that all visitors make sure they are in good health and haven't been exposed to sickness especially since his immune system is so low.  And, because he sometimes sleeps or take naps throughout the day, it might be best to call first before coming over, so you don't catch him sleeping.  I think it would be especially nice to receive visitors while I am gone at work during the day; that is when he is often alone now that the kids are all back in school.  It is also the time of the day he goes without eating.

God Bless!

Transfusion Dependency Continues.

Todd was tired and ready for a transfusion on our way to Cleveland Clinic August 17, 2016. The had a full day scheduled for him so we needed to start the day early which meant going up the night before. We usually stay at the Hope Lodge in situations like this but now that I'm working full time it is difficult to get there by 7 pm, the latest check in time. I would have had to take off work early on Tuesday in addition to taking off that Wednesday all day. Instead, Todd made hotel arrangements through the Priceline website. If you have never used it, you bid on a room for a certain price. But you have no choice of what hotel you end up with and there are no refunds.

We ended up with the Hilton Garden Inn Downtown Cleveland near the ball stadium. Sounded good. Unfortunately, we got a late start and didn't arrive until almost 11:00 after the long drive. Todd was exhausted. We went to our room and realized it reeked of cigarette smoke. We went back to the desk and tried to explain that Todd was a cancer patient, already didn't feel good and had a cough and we couldn't stay in that room. They informed us that it was a smoking room and that they couldn't move us because the entire hotel was full (which I find hard to believe on a Tuesday night).  They only offered to spray the room with a scent or put in an ozone filter machine, but that it would take hours!  I told them that neither option would rid the room of the smell plus he was exhausted and needed to lay down now. They refused to give us a refund saying their hands were tied because we booked through Priceline. I appealed to their moral obligation to do the right thing but once again said there was no other room. We also challenged the hotel for having smoking rooms in the first place when Ohio has been smoke free for over 15 years!  They said that since they were renting out a private space they could get around the laws and that they plan on getting rid of the smoking rooms when they remodel in the future. 

I don't mean to offend smokers. I have loved many people who were smokers,  most of them having died from the side effects. However, this is the reason why the laws are in place in Ohio: to protect non-smokers who have no choice in the matter. Especially sick people and children. Most smokers I know are conscientious and would gladly smoke outside. But this business wanted to make money on those smoking rooms they were having trouble selling. 

We said that Priceline listed the room as a non-smoking room, but the hotel insisted that they tell Priceline it may be a smoking room and it is Priceline's responsibility to tell consumers. I tried calling another hotel we had stayed at before. The entire hotel was non-smoking and they had a room at the Cleveland Clinic rate available but Todd was too exhausted to go. So we had to endure a night of smoke smell and no curtains. I called the GM but got voicemail. He called me back the next day while we were at the Clinic to offer us a free room but I refused.  I didn't want a free room then. He said it that every single room in the hotel that night was booked. I congratulated him and told him they apparently didn't need our patronage if they are that busy on a Tuesday night. I told him I don't want to stay anywhere that is not smoke free and I said with one in three people getting cancer it was likely he or the men working that night may have a sick family member and may be in our shoes one day. We showered, dressed, and tried to get out of there as fast as possible. I didn't want to walk around smelling like smoke all day!

When we arrived at the Clinic, Todd had to start his day of appointments with a few tests on his lungs, including a pulmonary function test.  We saw the pulmonary physician.  He asked several questions and reviewed the results of his prior lung CT in addition to the morning’s tests and said nothing looked suspicious.  He had no idea what was causing Todd’s cough.  He prescribed him some cough medication, but that was it. 

Next, was lab work.  They were going to give him at least one unit of blood even if his hemoglobin wasn’t below 8.0.  It had been hovering around 8.1 -8.3; not enough to get a transfusion but still not enough to give him energy.   Originally, the trial nurse didn’t have a treatment appointment scheduled for a transfusion, but on the Monday before, I knew he wasn’t feeling good and would likely need it. So, she was able to add it to the schedule.  It was a good thing, because he did need it.  His hemoglobin had dropped to 7.5 and they were going to give him 2 units.  We were waiting for the type and screen and results to come back when Sam the trial nurse and Dr. Hamilton came in to see him.  We were disappointed that all his counts had once again dropped even more:

Whites had dropped to 1.46; ANCs to .95, and platelets to 31,000. 

She thought it was likely that the trial drug AG-221 was losing its effectiveness.  There was just no other explanation. I was confounded when Dr. Hamilton started talking about other options: Revlimid (for patients with Chromosomal Deletion 5q), and even harsh chemo and a second transplant!  I didn’t understand why we were discussing this now; neither one of these last two options would have a high success rate at this point.  I thought we should have at least Revlimid to try and/or going back on Vidaza again before bringing those options up. She was also concerned that he was starting to lose a little weight.

While getting his transfusion, the respiratory therapist came in and gave him his Pentamidine Breathing Treatment and another trial nurse came in for his EKG.  He had to miss two other appointments, because of course, everyone was running behind and we couldn’t get to either.  One was to receive more immunizations.  I wasn’t upset about missing this one.  I didn’t think it was a good idea anyway; to be getting more immunizations with his counts so low. 

We drove through thunderstorms and finally got home around 9 p.m.  I was hoping he would start feeling better right away, but the next day, he felt faint and couldn’t drive home from a haircut.  Luckily he was near his mother’s house and stopped there to take a rest and then drove home a couple of hours later.  That day and the next day he still felt puny and didn’t get out of bed much. 

This concerned me, so on Thursday, I put a call into the doctor and she called me back on Friday morning, August 12.  I told her about Todd’s lack of energy and nausea.  I also asked why she brought up chemo and a second transplant.  She said she just wanted to discuss all of his options.  She said that if Todd started needing transfusions more often, that she would consider taking him off the trial drug and starting the Revlimid, but not until then. 

By Friday afternoon, I was concerned and decided to call Dr. Eytan Stein at Memorial Sloan Kettering in New York City. He saw Todd before he started on the AG221 and I knew he had a lot of trial experience with the drug.  I wanted to pick his brain about other options.  I left a message and by that evening, he called me on my cell phone at home.  We discussed Todd’s case and current condition, the great response he had with AG221, and then the steady decline of his blood counts.  He was surprised at Todd’s great results with the drug, but then said that they had noticed that some patients who stopped responding to AG221 who had the IDH-2 genetic mutation, often developed an IDH-1 mutation in addition.  For these patients, there was a new trial drug AG881.  He asked me to have Todd’s bone marrow biopsy, doctor’s notes, and latest genetic panel sent to his office for him to review.  

I sent an email to Sam, his Trial Nurse at Cleveland Clinic to request they send the information to Dr. Stein.  Unfortunately, they hadn’t done a genetic mutation panel since May 2015, so they would have to wait until his next scheduled bone marrow biopsy to get this, but she sent what they had.  We were charged $45 for this request, but I will pay it happily.  I decided last year that I would do whatever it takes, including seeing the best doctors, traveling to any hospital to help him. 

I talked to Sam on August 17, the following Wednesday and told that I didn’t want to step on Dr. Hamilton’s toes, but that I really wanted to hear what Dr. Stein had seen in his trials and practice that could be of any help to Todd.  I also asked her to call in blood work orders, as Todd was still feeling poorly and I feared he needed another transfusion.  She called them in for the next day, Thiursday, so if he needed a transfusion, he could get it on Friday before the weekend.  Stubborn Todd however, refused to go then.  He wanted to wait until Monday, August 22, 2016 to go have his blood work done that way they could use it for his trial draw and wouldn’t have to repeat blood work scheduled on Wednesday August 24, for his trial draw for Cycle 18, Day 15.  Well, that was a mistake, one he admitted later.  He felt horrible all weekend. He didn’t drive, leave the house, or get out of bed.  The Olympics were on TV, so that kept him entertained in bed between naps.  By early Sunday night, his cheeks looked red so I grabbed the thermometer!  He was running a low-grade fever or 100.3; enough to go the emergency room.  He refused to go. I conceded as we both thought it was just a neutropenic fever.  We kept an eye on it and it was down to 99.6 before bed.

In the morning, he took a shower and his temperature was normal.  I took him to Soin Medical Center for a nurse’s visit in the Cancer Center there on the 4^th floor at the appointed time of 8:30 a.m.  His nurse also felt that he had waited too long to come in and thought he looked especially jaundiced since he was so pale (low hemoglobin).  She said that she wasn’t going to let that happen again and scheduled him for another blood draw to check counts for next week, August 31, 2016. I was glad for that.  After waiting almost 2 hours since we arrived, we finally got his counts back:

Hemoglobin was a low 7.0.  Whites 1.0.  Platelets 22,000 (transfusion of platelets needed at 15,000) and ANCs at .7 (neutropenic at .5).  

She gave him all the necessary warnings about his care: Careful with hot showers because of getting petechia spots, bleeding while shaving, etc.  When she went to schedule the transfusion, she came back and said she set it up for the next day, thinking that was what he would want.  I was upset at this!  I told her that he needed the transfusion TODAY! And that we were not leaving without one; he couldn’t wait.  Todd was so sick, he didn’t feel like arguing with her; so I did!  She told us that it would take 3 hours for the type and screen, longer to get the blood ready, do the transfusions, and that we wouldn’t be done til 8:00 p.m. that evening.  I told her I didn’t care and questioned why she didn’t do the type and screen when she drew blood.  He had already told her that he knew he was going to need a transfusion.  We had already been there for 2 hours!  She said she can’t type and screen for blood type until the initial blood results come back and she gets orders for the transfusion.  To me, this could have been done at the same time; this is what they do at the Cleveland Clinic and I told her so.  Long story short, I was so glad that I took him and told my boss I would be late.  If not, I know he would have went home and waited the next day.  Then, he would have had another day of feeling  bad and getting up early again. 

It didn’t end up being as bad as she thought.  I wheeled him done to the Universal Care Area and they checked him in right away and got him a bed.  I made sure he ordered lunch, then I went into work for a few hours.  They had the first unit to him by 1:24 p.m.  I went back to the hospital about 4:20 and he was finishing his second unit.  We were out of there by 5:00 p.m.!

This is why the caregiver needs to be present to help with the decisions that the sick patient don’t feel like dealing with.  He didn’t want to argue with the nurse; he didn’t feel like it!  But I did!  He told me later that he was glad that he didn’t wait until the next day.  And unknown to the nurse, we were out 3 hours earlier than her prediction! 

That afternoon, I talked to Sam, his trial nurse at the Cleveland Clinic and let her know his numbers and that he received 2 units of blood.  She said that she was feeling pretty sure that he was losing his response to the AG221 and would talk to Dr. Hamilton.  She was also concerned with his low white and ANC counts and would also discuss putting him back on his Cipro antibiotic as a preventative measure.  After talking to Dr. Hamilton, Todd was ordered to take his Cipro 2x a day and we were told that Dr. Hamilton was going to talk to Dr. Stein at Memorial Sloan Kettering to discuss Todd’s case and the option of taking him off of the trial drug AG221 and putting him on Revlimid. 

The transfusion seemed to help.  He was able to get around yesterday and even drive.  I am feeling a sense of urgency to get his medication changed and was greatly relieved that the two doctors are going to talk.  

The trial for AG881 is only available at 5 US locations: New York, Chicago, Boston, Aurora Colorado, and Texas. We won’t be able to find out if he eligible until he has the genetic panel processed on his next bone marrow biopsy at the Cleveland Clinic at his next appointment on September 7, 2016.  Then, it may take a few weeks to get the results back.  I’m hoping in the meantime that they can start him on Revlimid.

Did I mention that Revlimid (Lenalidomide) is on the market already and that it is very expensive?  According to Wikipedia, the cost for one year’s use was about $163,381.00 in 2012. (Wikipedia, 2016). Drugs.com quotes a 10 mg tablet, the starting dose for MDS patients at $16,457.14 for one month’s dose of 28 tablets!  (Drugs.com. 2016). I’m praying we will not have to pay all of that between insurance and a request to the drug company, Celgene, to buy it at a reduced price.  Of course, there is no generic available.

I'll post after blood work next week. Until I continue with my mantra:  Whatever it takes!

For More Information: 

Alsumidaie, M. January 2, 2015.  “The Cost of Saving a Cancer Patient’s Life” Applied Clinical Trials. Web. Retrieved from: http://www.appliedclinicaltrialsonline.com/cost-saving-cancer-patients-life-analysis-celgenes-revlimid

Celgene.com. May 2015. “Celgene Patient Support for Revlimid” Web.  Retrieved from: http://www.celgenepatientsupport.com/revlimid-patient/

ClinicalTrials.gov. August 23, 2016.  “Study of Orally Administered AG-881 in Patients With Advanced Hematologic Malignancies With an IDH1 and/or IDH2 Mutation.” Web.  Retrieved from: https://clinicaltrials.gov/ct2/show/NCT02492737

Drugs.com “Revlimid Prices, Coupons and Patient Assistance Programs.” August 8, 2016.   Web. Retrieved from:  https://www.drugs.com/price-guide/revlimid

Wikipedia. Lenalidomide (Revlimid).  August 24, 2016. Footnote 2, 2012.  Web.  Retrieved from: https://en.wikipedia.org/wiki/Lenalidomide