First Week of Outpatient Clinic Visits: MD Anderson

Todd waits in the Sundial lookout area of the ATC at MD Anderson.

Todd had his second fast track outpatient clinic visit at MD Anderson on Friday, October 27, 2016. We didn't get much sleep the night before. Todd wasn't feeling well, so we went to bed late and he got up around 4:30 am in pain and discomfort. We had a couple early morning phone calls and texts from home around 6:00 am and decided to get up and try to get to the clinic early for his appointment. They schedule a time but we can arrive any time before 10:30 am. The sooner you arrive (any time after 6:30), the sooner you can get a transfusion appointment and be out of there for the day (supposedly).  Wednesday we didn't get there until about 10 am, therefore, we didn't get a transfusion appointment until 4:00 pm and they were running at least an hour behind. So, we didn't get out of the hospital til about 7:00 pm. There is a joke that the other patients tell the newcomers to the ATC (Advanced Treatment Center):

Do you know what "MD" means in the name MD Anderson?  Answer: Most of the Day!

On Friday, we didn't arrive until after 8:30 am due to some traffic delays. Labs and vitals were quick. His hemoglobin was still at 10!  Platelets were very low again at 4,000. No whites or ANCs yet. Today his results appointment was with Dr. Benton. His PA came in to discuss his symptoms, medications, and do an exam.

I was concerned about his lack of energy and excessive sleeping even though his Hemoglobin has been so high. He has seemed less responsive to me the last 7 days or so. There are so many things I need to be aware of besides fever, like headaches, new pain, heart palpitations, and symptoms of a brain hemorrhage (like Todd being hard to wake).  So the PA performed a cognitive exam along with the physical exam. She felt good that there was no leaking of any blood vessels in the brain afterwards but noted his extreme fatigue as well.

Dr. Benton came in and was glad to finally see Todd "in-clinic" instead of in the hospital. He acknowledged that Todd's counts were low but expected, well except for the platelets being so low. He said he noticed that Todd's platelets were having a difficult time recovering. I mentioned that he had the same issue post-transplant and even on the trial drug AG221; his response was without "platelet recovery." 

He quizzed us asking if we knew what happens to the platelets: they are taken by the spleen, used up, and/or destroyed by the body if it sees the transfused platelets as enemy invaders. He suggested using HLA matched platelets if Todd's numbers don't get out of the single digit thousands 1,000-9,000 soon. I mentioned that Cleveland Clinic had tried this too after transplant. This last scenario is what

Dr. Kornbleu meant when he said Todd could have built-up antibodies against the transfused platelets.

For some reason the platelet transfusion protocol includes giving intravenous hydrocortisone prior as a pre-medication. Every hospital has difficult protocols but this is the only hospital that has done this. They do it to help prevent a reaction to the platelets, but Todd has never had an issue with this. They also do not run the platelets with an IV pump in the ATC. Instead they just use gravity to run the platelets. The only risk associated with the use of hydrocortisone prior to transfusion is that they can weaken the immune system. Todd has been getting platelets every day or every two days. It is probably not a good idea for him to have the steroids/hydrocortisone that often. So we asked them to stop using them as a premeditation. Why didn't any of the nurses or doctors suggest this?  Apparently they use a small dose, but we still felt like another unnecessary risk, even if it is a small one.

Dr. Benton wasn't worried about Todd's extreme fatigue. He explained that Todd's marrow is at its "nadir" or "low point."  (Chemocare.com 2002-2016).

"The nadir time is usually about 10 days after treatment..." (Chemocare.com 2002-2016).

Dr. Benton feels that this period of "nadir" where the bone marrow bottoms out is really Days 14-21. He said that we need to start counting days from Day 6 like it is Day 1 to determine or gauge where Todd is at. Days 1-5 was just the DAC, which is not the same as the harsh chemo that started on Day 6. So, as of Friday, Todd was at Day 18.

He also explained that everyone reacts differently to chemo. Todd didn't lose any hair or get diarrhea or multiple mouth sores like some patients. For him, his symptoms have been severe fatigue and aches/pain. He set up an appointment for Todd to see a specialist who helps patients manage their symptoms better on Thursday, November 3, 2016. In the meantime he wants Todd to come in for a CBC and platelet transfusion on Sunday, October 30 through the out-patient clinic because they want to do the bone marrow biopsy on Monday, October 31, 2016.   He wants to see either an "empty marrow" or a "recovering marrow" for the results. We don't want to see any blasts. If there are blasts, they will likely add another round of DAC at the least. It might also push back transplant dates.  

I had some questions regarding the conditioning and eligibility for any trials that can be used along with the transplant. I have been researching what MD Anderson offers and there are at least 2 I would like to see if Todd would be eligible for. One uses pre-engineered cells to help reduce the possibility of getting Graft versus Host Disease and another that uses NK (See article on Natural killer cells).  We have only seen

Dr. Ciurea, the transplant doctor, once for about 15 minutes on the first day of Todd's induction chemo. I told Dr Benton that I would like us to sit back down with Dr. Ciurea to get a better feel for what the plans are for transplant. He agreed and set up an appointment for us to see Dr. Ciurea on November 10. Dr. Benton said he wishes that we could see what goes on behind the scenes because the doctors working together are in constant communication with each other. I told him that I didn't doubt that, but I wanted to be kept in that communication loop too.

Speaking of which, I've been frustrated with the timeline of getting Abby out here for testing. I hope I have already mentioned that they want to use Abby, our oldest daughter as the best Haplo or half match bone marrow donor. First, they wanted to get her out here right away, but then they said it would take 2 weeks at least to get approval. So, tentatively, here are the dates for transplant:

November 15-18

Abby comes out for exams and talk with doctors.

November 21

Todd admitted to hospital one week prior to start bone-marrow-killing chemotherapy

November 28

Transplant day. They will harvest Abby's bone marrow that morning and start transfusing him after. Then the 100 day begins.

SUNDAY OCTOBER 30, 2016

Today, Todd had to come in for a CBC and platelet transfusion. Since he is having the biopsy tomorrow they want to boost his counts. They like the platelets to be >30,000 but we all know that's not going to happen right now. Today's counts: Hemoglobin hanging in there 9.6. Platelets 2,000; no whites or ANCs.

  

I love meeting other patients and their families. Friday I met Burt (in his 50s) and his mother. Burt has a rare type of Leukemia and is recovering from his first bone marrow transplant. None of his siblings were a match, so he used a full match from the National Donor Registry; a young 21 year old man who thankfully donated. They were so grateful to this young man and his donation! 

Today, we met a gentleman named Thomas (age 69) and his family. He was just recently diagnosed with MDS. He was feeling tired and was diagnosed with a terrible kind of pneumonia, which he is still recovering from. He was here getting his second round of a trial dose SGI-110, a great treatment drug from Seattle Genetics used to treat MDS with CD33 mutation. There is a lot of buzz about this drug and initial testing looks promising. The doctors at The Cleveland Clinic recommended this for Todd at first, but he didn't qualify for it because he had received prior treatment for his MDS. There is an immediate comradely between cancer patients. We become one big family in the same fight, on the same team. It's a fight that involves the uprooting of the lives of the patient, caregivers, and family members of all ages. We lean on each other. We learn from each other’s fight and we share openly love and hope. Cancer is no respecter of persons but cancer families bond together respecting all persons.

References:

NK Cells: https://www.mdanderson.org/publications/oncolog/february-2015/natural-killer-cell-therapy-may-augment-treatment-of-hematologic.html

SGI-110 Trial Study:  https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2013-0901.html

Regulatory T Cells Pilot Study to prevent Graft versus Host: https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2014-0150.html

October 26, 2016: First Fast-Track Outpatient Appointment

Wednesday, Oct 26.

Today, Todd has his first Fast-track Outpatient Appointment at the Leukemia Clinic at MD Anderson.  It was a learning process.

We left the hotel in the morning, after rush-hour traffic.  I couldn't believe how fast and close we were to the hospital from the hotel taking the highway.  When there is no traffic, it is definitely close enough. 

The Outpatient Leukemia Clinic is a well-oiled machine.  They have the process down to a science.  First, you sign-in and go have labs drawn.  Then you go to have your vitals taken.  Then, you wait...About an hour or two later, they call your name and you go into an exam room to go over your results with a nurse.  Todd's counts were mixed.  His Hemoglobin was a remarkable 10.0!  (No transfusion of red blood needed), which is the highest it has been in months!  His platelets however, were 2,000 the lowest I can ever remember.  His potassium and magnesium were low, so he had the choice of having them infused, which would take 2 hours or he could take pills; of course, he chose the pills.  He needed platelets, so we couldn't get a treatment time in the ATC or Advanced Treatment Center until 4:00 p.m. 

They also informed us that the transplant team had scheduled a Pulmonary Function Test at 2:00 p.m.  So, we went there first, even though we arrived early.  After that, we had to sign into the ATC area.  We were at least 2 hours early, but signed in hoping that we could get in sooner, but that didn't happen.  They have a huge waiting area called the Sundial on the floor with reclining chairs that face large plate glass windows overlooking the valet area, couches, and tables and chairs.  While waiting we met a retired preacher from Cold Springs, TX who grew up near Akron, Ohio.  He was over 70 years old, had AML, and had been through 2 prior transplants, relapsing both times.  At the present time, he was on DAC chemotherapy every 6 weeks.  I didn't know that DAC was used as monthly treatment, but it is a hypomethylating agent, like Vidaza, which I know they use as monthly treatment until it stops working.  I found this news a little upsetting.  It plays on my old thinking that transplants don't work or work that often.  His caregiver thought it is all about the money, insisting that patients try transplants, especially multiple times.  We had agreed with this sentiment before Todd's first transplant; we felt pushed into trying it, that it was the cure-all to end all, which we shortly learned it wasn't.

We didn't get back to a room until about 4:20 p.m.  One unit of platelets usually takes between 30 min- 1 hour depending on how fast they are run.  While getting his transfusion, the Bone Marrow Transplant Coordinator called Abby to get some general health information over the phone (can she walk up stairs, etc.).  She told Abby that they don't think they will be able to see her next week either!  The Coordinator said it might be in 2 weeks!  We are going to get dinner and retire to the hotel. 

We come back on Friday, October 28, 2016 for his next out-patient clinic appointment.  This time, instead of seeing a nurse, we will go over the results with Todd's Leukemia doctor here, Dr. Christopher Benton.  I have some questions to ask and I am looking forward to seeing him.

Before I go, I wanted to share this prayer that my fried Robin Chew, from my former office at Northwestern Mutual, that Todd and I plan to read and pray everyday.

October 24-25, 2016. On our own; Out of the Hospital

I can brag now that we made it through the first night out of the Hospital, October 24! We survived one full night outside the hospital with no fever! Thank God. I was afraid to post last night that Todd was discharged from the hospital; there was a slight delay as he developed a rash on his torso. After examinations, the doctors thought it was a reaction to the oral antibiotics they started him on before discharge. So, they changed the prescription and we were off out of downtown Houston and onto a 5 lane highway going 35 miles per hour heading towards Pearland, a suburb south of Houston.

Our hotel is great! The beds so comfortable. We got dinner and slept in late. No fever!

We learned yesterday, October 25, 2016, that the Bone Marrow Transplant Team/Lab processed the blood from the kids and Todd's other brothers for the bone marrow match. All of the kids were a match, but Abby was the closest match.  Todd's half-brother Paul was also a good half match, but not quite as close as Abby.  At first the Transplant Team wanted Abby out here this week! As soon as we started making plans to fly her out, they informed us that they had not received the needed insurance approval to run the tests on Abby, the donor. So we are hoping to get her out here early next week. Thanks to all who have donated to the Go Fund Me Account; now we can fly Abby out here and house her with us.

Our second day at the hotel, Todd did not get out at all.  I had a difficult time getting him up or awake in the morning and afternoon, so I called the nurses' line.  They told me to keep an eye on him and bring him in if I felt uncomfortable with his excessive sleeping.  By early evening, he ate some dinner and sat up in bed the rest of the night to watch TV, including the first game of the World Series in Baseball (cheering for the Cleveland Indians over the Chicago Cubs!). 

Leaving the Hospital after being admitted for Fever.

Treatment Timeline: September 25, 2016 - Present

I wanted to make a post of Todd's treatment by date and day for me and others to keep track of our progress.  I plan on updating this from time to time.  I'm sorry for not keeping up with posts here, but things have been crazy busy every day.  The time goes so fast and it is easy to lose track of the days.  The Blogger App on my IPhone has also not been working, which has made it difficult to post; this means I have to do it on my laptop only. 


September 25, 2016:  Todd taken to the ER at Soin Medical Center, Beavercreek, Ohio.  Diagnosed with Splenomegaly, low CBC counts, and blasts in pheriphal blood. 

September 25 -29, 2016: Admitted to Soin Medical Center
September 29, 2016:  Discharged from Soin; Fly to Houston, TX.  Taken to ER at MD Anderson Cancer Hospital and Admitted.  Diagnosed with MDS with Secondary Acute Myeloid Leukemia.
October 4, 2016: Treatment Decided.
October 5, 2016: First Day of Induction Chemotherapy.  DAC + CIA; 5 + 5 day regimen.
Dr. Stefan O. Ciurea, MD, Transplant Doctor came in for Bone Marrow Transplant consult.  Suggested testing the kids for Haplo Match. 
October 5- 9, 2016: Days 1-5 of DAC chemotherapy
October 10 - 12, 2016: Days 6 - 8 of Idarubicin Chemo
October 13- 14, 2016: Days 6 -9 of Clofarabine. Ted Cade, Paul Cade, and our 3 kids submit DNA/HLA blood tests for bone marrow transplant match.
October 10- 14, 2016: Days 6 -10 Cytarabine
October 14: Last day of Chemotherapy. First Lumbar Puncture and Intrathecal Chemo: Methotrexate
October 18: Second Lumbar Puncture and Intrathecal Chemo: Cytarabine.  Discharged from Inpatient Stay at MD Anderson
October 18, 2016 11:10 Todd starts running a fever.
October 19, 2016 Todd to ER at MD Anderson.  Re-admitted to Transplant Floor 17.
October  21   : Moved to Floor 16; Room 1678
October 24: Discharged from Hospital 2nd time. 
October 24 - Present Staying at Springhill Suites by Marriott, Pearland, TX 
October 26, 2016.  First Out-patient Fast-Track appointment.  Platelets needed (2,000) along with potassium and magnesium. Hemoglobin 10!  No whites or ANCs.  Received platelet transfusion in ATC.
October 31, 2016.  Bone Marrow aspirate.  Cycle 1, Day 28 Induction Chemo DAC + CIA.  Results: blasts at 20%

NOVEMBER 2016

November 4, 2016.  First day Todd had 0 platelet and 0 White Blood Cell counts.
November 5, 2016.  Todd runs a high fever and is taken to ER.  Is admitted to Hospital. Has a xrays and CT of head.
November 6, 2016  Confirmed fungal sinusitis infection in right sinus.
November 8 2016 another follow-up bone marrow from DAC-CIA induction. 
November 9, 2016 BM aspirate results at 38% blasts.
November 14, 2016  First hyperbaric chamber treatment.
(Nov 14, 15, 16, 17, 18, 21, 22, 23, 29, 30) 10 days of hyperbaric treatments at Memorial Herman.
November  18, 2016  White cell transfusion from donor.
November 20, 2016  Todd spikes a high fever; maybe from the white cell transfusion. Started new round of IV Antibiotics.
November 22, 2016.  Started Second type of chemo treatment to fight MDS/AML.  Day 1 of DAC
November 22 - 26, 2016. Day 1-5 of DAC
November 22, 2016.  Bone marrow biopsy: blasts decreased to 24%.  Maybe due to a late response from first round of induction chemotherapy.
November 23  Started second chemo regimen along with 5 days of DAC: Venetoclax (Venclexta ) 100 mg tablet per day with Posiconozole and Voriconozole tablets added; continued Ambisome antifungal IV treatment.
November 30, 2016.  Todd is discharged from the hospital to outpatient care. Last hyperbaric chamber (10th) treatment.  First note of an abnormal EKG.

DECEMBER 2016

December 2, 2016.  First outpatient appointments post-discharge from third hospitalization.  Ambisome infusion, CBC labs, reviews, every Monday, Wednesday, and Fridays; along with some Sunday transfusions of platelets.  Some infusions of Potassium and/or Magnesium infusion balls sent home. 
December 2, 2016.  Appointment with Dr. Christopher Benton
December 3, 2016.  Move into Apartment on Brompton Road, Houston, Texas.
Dec 5, 7, 9, 12, 2016: Outpatient appointments.
December 9.  Dr. Benton came by ATC and increased Venetoclax dose to 200 mg. until Sunday.
December 11.  Increased dose of Venetoclax to 400 mg. (no -azole drugs)
December 13, 2016.  Appointment with Infectious Disease Dr. Shelborne; Must continue on Ambisome or fungal infection could become invasive.  Was shown to be invasive from first biopsy of the sinus, but infection was caught very early.
December 13.  Bone Marrow Aspirate.
December 14.  Dermatologist Consult with Dr. Pacha.  Biopsied spot on right shin for fungal infection.  Out patient appointments: CBC/LAB, review, Ambisome, 2 units of RBC; 1 unit platelets and ball infusion of magnesium.
December 16.  Outpatient appointments including Dr. Benton to review bone marrow aspirate results, check on continued care at MD Anderson due to change in medical coverage beginning Jan 1 2017.  Sample was not good to look at; only could estimate 10% blasts. Flow cytometry was done in addition to get better counts.  These results showed 33% blasts. 
Dr. Benton recommended a second cycle of Day 1-5 DAC plus 400 mg of Venetoclax.
December 18.  Day 1, Cycle 2 of DAC plus 400 mg. of Venetoclax.  DAC given by outpatient infusion for five days.  December 18-22.

December 23, 2016.  Fly home to see family for Christmas.

JANUARY 2017

January 2. Bone marrow Aspirate scheduled.

January 8.  Day 21 of Cycle 2 DAC + Venetoclax.

January 15.  Day 28, Cycle 2 DAC + Venetoclax.

January 16.  Bone Marrow Aspirate scheduled. 

                   

October 21, 2016

Things settling down a bit. Yesterday was a rough day.  Todd had a 103 fever and felt hot and lethargic to the point that he couldn't stay awake. I was so worried about him, because it was very hard to rouse him.  Once the fever was gone he felt some better. They moved us Transplant Floor on 17 back to the Leukemia Floor on 16 about 1:15 am this morning!  We have a very small room but hopefully we won't be here long. His counts are very low. Platelets have been 4,000!

Thanks to Kim Bird (my high school friend who lives in Ft. Worth, TX) and her husband John for running out and buying Todd a new pillow and delivering it to the hospital. So many of you have been extremely generous in your support!  We are so grateful. You are the driving force behind us. The wind beneath our wings when we are too tired to do anything but coast. And we are tired of being shuffled around; it's exhausting. It will be nice when we can find a place to settle into.

Todd's Room 1678 Second Admission

October 19, 2016 Rush to ER with Fever and Re-Admission!

It's been the worst, most stressful 24 hours since all this started 4 weeks ago. As soon as we got discharged and settled into the hotel last night Todd got the chills and spiked a fever. Had to rush him to the ER. Luckily, his cousin Denise brought us a car to use just hours earlier. We spent all night in the ER until they got us into a room. Only slept few hours.

I had to go back and get all of our stuff out of the hotel before check out time, but I forgot to grab his "My pillow" from the hotel room. By the time I called and drove back there it was mysteriously gone. Obviously someone took it. Who takes a sick man's pillow? I guess someone at the disgusting Econolodge we had to stay; where homeless people were camped out with shopping carts and sleeping on the ground all around the hotel. I've cried the last two days especially since some people in our lives can only be cruel and hurtful and because I'm too tired and emotional to cope with people.

Todd is still running a fever. It has gotten as high as 103!  The doctor came in and said, "You could fry an egg on his stomach!"  We still don't know why. Thanks to all who have been praying and donating. We really need your support. 

Luckily, I am able to keep all of the things we don't need in the car, in the parking garage.  Parking here is $12 a day, which can add up if we would be admitted for long.  I went to the Social Work Department and complained about the hotel.  I said that the department should not use that place!  Patients and families are already stressed out enough without having to deal with being scared to walk down the road to get food or have to deal with people stealing. 

Before we got the car, we had to take the hotel shuttle to get there.  It was free, but we it took us almost an hour to go 2 miles down the road, because it had to stop and pick up other people from three other hospitals nearby.  Todd was nauseous and could barely handle the bumpy ride. 

If you are reading this blog, and need to stay near MD Anderson, let me tell you to avoid staying near the NGR Stadium/Old Spanish Road area.  While there are shops and restaurants nearby, there are homeless people everywhere, most of whom will come up to your car window to beg for money.  I walked nearby to get us dinner the night we were there and had to pass homeless people sleeping on the ground near the sidewalk.  It is sad; I'm not angry with these people, but I have to admit that it makes me feel unsafe.  I'm already stressed and trying to navigate unfamiliar territory; I need to feel safe. We will definitely be finding another place to stay, even if we have to pay full price for it. 

Some of you recommended the Rotary House Hotel, attached to MD Anderson.  It looks great, but I fear it is too expensive even if we could get a reservation there.  From I could tell when I looked online, it was booked for weeks/months. 

The city is aware of the homeless problem and working to address it, but it looks like a solution is far away:  http://cw39.com/2016/10/20/houston-mayor-accepts-1-million-jp-morgan-chase-donation-to-help-end-chronic-homeless/

October 18, 2016 Todd is discharged from Hospital

Todd was discharged and We were able to leave the hospital late in the day. He had another lumbar puncture and intrathecal chemo treatment this morning. We also learned that they found no cancer cells in the first lumbar puncture!  So that's good news. Todd was a bit tired and nauseated getting to our hotel room but we are settling in hopefully for the next 12 nights. Here is a pic of Todd with one of his nurses Mike who liked to talk Football. This was his bed and our room on the Leukemia Floor.

October 16, 2016 Second LP and Intrathecal Chemo

Because the doctors rounded so late today, they are not going to release Todd until tomorrow afternoon, after they do his second Lumbar Puncture and Intrathecal chemotherapy.

Our social worker has a arranged for us to stay in a hotel nearby for 12 days.  Starting October 30, we will need another place to stay.  I think I found us a small apartment through Eagle's Life Ministries. It is still about 10 miles or 30 minutes away. So, we will need to see if that is close enough.  There are so many complications that can happen, I would rather be closer like 1-2 miles away, but I'm just not sure if we can find something other than a hotel.  Even the small efficiency apartment would cost us $900 per month. All the other places have a 2-3 month waiting list and a hotel every night could get expensive.  Praying for open doors and information.

October 15, 2016 Chemotherapy is done.

Chemo is done!  Todd will likely be discharged on Monday notwithstanding any complications. He still needs transfusions daily so I'm not sure how that is going to work coming in every two days. The low Hemoglobin is not so much a problem if he has to wait a day, but his platelets have been under 10,000 for days. Even with multiple platelet transfusions yesterday they could only get his count up to 7,000. We will likely be staying in a hotel nearby for the first few days to weeks. Pray that God will handle the logistics and keep Todd protected from a bleeding incident or hemorrhage. Pray that the find a donor quickly.  The kids have already completed their HLA blood work along with his other brothers.  Now we wait...

October 13, 2016 Day 9 of Chemotherapy

Well  Todd had a good day. No fever!  9/10 days of chemo done. It looks like the blasts in the blood have gone down to 0!  They couldn't do the lumbar puncture on Wednesday because he still had 3% blasts in his blood stream; that could have injected the blasts from the blood into the spinal fluid!  Too scary. So, as long as they can get his platelets up higher, they will attempt the lumbar puncture tomorrow.

Link To Go Fund Me Page for Todd Cade

Please donate as you feel led and after Prayerful consideration.

Link to Todd Cade Go Fund Me Page

Here is a brief summary from the Go Fund Me Page:

Todd Cade was diagnosed with a bone marrow/blood cancer known as MDS in Sept. 2011 at the age of 42.  He underwent a bone marrow transplant in September 2014, but relapsed 80 days after.  Chemotherapy and a trial drug gave him another two years, but in September 2016, his cancer progressed to Acute Myeloid Leukemia. He was transferred from a Beavercreek, Ohio Hospital to MD Anderson Cancer Hospital in Houston, TX where he underwent a special trial chemotherapy regimen to control the AML. 

Now Todd is in Desperate Need of a SECOND Bone Marrow Transplant AS SOON AS POSSIBLE to have any hope of long-term success.  Todd and his wife/caregiver Kimberley need help financial help now to pay for nearby housing, transportation, groceries/food, prescriptions, deductibles, and other medical expenses since Todd will be required to stay in Houston for about 4 more months. All of these expenses are in addition to supporting their three children back in Ohio. 

AML is a deadly cancer and Todd's cancer is resistant to treatment. No other hospital offers the cutting edge treatment that Todd needs.  It would ease his mind to know he can get the life-saving treatment he needs in Houston, TX without causing an additional burden to the family's financial struggles that have resulted from his long fight with cancer.__

Lumbar Puncture on Day 8 of Induction Chemotherapy

October 11, 2016

In my last post, I really didn't explain the difference between MDS Myelodysplastic Syndrom and AML Acute Myeloid Leukemia in regards to Todd's diagnosis.  Todd has MDS with secondary AML.  Because his blast cells in the bone marrow have increased to more than 20%, this constitutes the secondary diagnosis of AML.  (See references and link to the National Cancer Institute).

The CD56 genetic marker, known as NCAM1, is an indicator that the cancer could enter the Central Nervous System (CNS). This is why they will be performing a Lumbar Puncture (LP) tomorrow.  The National Cancer Institute (see references) explains this procedure and provides the following diagram to show how it is performed:


Image: National Cancer Institute Website. 2016.

They collect a sample of the cerebrospinal fluid (CSF) and test it for leukemia cells to see if any has penetrated the brain and spinal fluid.  As a preventative measure, Todd's doctors will be injecting "intrathecal" chemotherapy (either methotrexate or cytarabine) into the spinal fluid to treat any cancer cells right away.  Plus, it is best they replace what fluid is being withdrawn to help avoid a bad spinal headache.  The doctors will only perform the LP if his platelets are ~30,000.  They will be transfusing him early in the morning and then take another platelet count to see if they are high enough.  They may be able to give him another unit just prior to the procedure if necessary. 

The rest of Todd's chemotherapy DAC + CIA for 10 days has been going well as it can be.  He has developed one mouth sore and rinses his mouth with a mixture of baking soda and salt 4x a day.  Today, October 11, 2016, he spiked a fever of 101.8 which caused quite a commotion in the room.  They were able to give him Tylenol to lower the fever, but the barrage of tests to see if it was just a neutropenic fever or if it was the start of an infection went full steam: chest x-rays (which looked good), blood cultures, intravenous antibiotics, and a pick-line installed in his arm to use in case of a port infection.  A neutropenic fever happens when the white counts and ANCs (neutrophils) become so low.  Sometimes they indicate an infection, other times the cause is unknown.

Todd has been alternating between needing blood transfusions and/or platelets about every day or every other day.  Today's CBC:  Whites: 0.5; Hemoglobin 8.9; Platelets 13,000; ANCs .40 (<.50 indicates neutropenia); and blasts in the blood stream yesterday were at 9%.  He had transfusions of blood and platelets today.  Unfortunately, these low counts are what the doctors want to see.  This means that the chemotherapy is working.  Although the chemo kills the cancerous cells, it also kills the good too.

We still don't know if Todd will be discharged on Friday and put into the "Fast track" program of returning to the hospital every other day on an out-patient basis for CBCs, transfusions, clinical appointments, etc.  We would also have to stay within 10 minutes of the hospital in case Todd would run a fever or have some other complication like bleeding.  For the first 12 days we are going to have to fall upon the mercy of the social work department who can assist us with a hotel stay nearby.  After that, we are on our own in finding and paying for a place to stay.  I have already called numerous organizations to find housing, especially discounted housing, from the Joe's House List given to us by our social worker.  Most of these places have a 2-3 month waiting list!  Which might be of help post-transplant, but not these first 30 + days we have to wait until transplant admission. 

Many of you have asked how you can help.  My top priorities at this time is: first, short-term lodging in and around the hospital.  Second, would be money for eating out.  If we stay in a hotel, we would not likely be able to cook or store food for meals.  Thirdly, transportation will have to be determined.  Some local hotels offer an inexpensive shuttle; if not we will have to use Uber, a taxi, or public transport.  Todd has a generous cousin who lives between Galveston and Houston who may be able to lend us a car!  This will be useful after transplant, but I'm not sure we would have a place to park it at an urban hotel and parking at the hospital is $14 a day.  It is hard to say which would cost more. 

Visa gift cards or restaurant food cards, would be helpful.  They will have to be sent to our home where my mom could forward them to us, once we know where we will be staying.  Thanks for your prayers and support.  I'll update when possible.  If you have access to Facebook, I update the "Praying for Todd Cade" Facebook Page a little more often. https://www.facebook.com/toddsMDS/


References:

PDQ® Adult Treatment Editorial Board. PDQ Adult Acute Myeloid Leukemia Treatment. Bethesda, MD: National Cancer Institute. Updated  07/28/2016.  Retrieved from: http://www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq. Accessed 10/11/2016[PMID: 26389377]

Acute Myeloid Leukemia with MDS Diagnosed; Treatment Decided Oct 4, 2016

 Induction chemotherapy -

Chemotherapy given to induce a remission. 

      This term is commonly used in the treatment of acute leukemias.     Chemocare.com 2002-2016

After 6 days at MD Anderson Cancer Hospital, the doctors finally had enough information from the test results to make an official diagnosis and propose a game plan for treatment.  On Tuesday, October 4, 2016, Dr. Benton came by in the morning with the much anticipated bone marrow results.  Todd's blast counts were at 21% which officially puts him into the diagnosis of MDS with Secondary Acute Myeloid Leukemia (blasts > 20% in the bone marrow).  While the full genetic panel was not back, the bone marrow flow cytometry report revealed a positive major genetic mutation marker known as CD56, also known as NCAM1, Neural-Cell-Adhesion-Molecule 1.  This mutation stems from a translocation of the 8 and 21 chromosomes [t(8;21)].  Having this mutation puts Todd at risk of the Leukemia infiltrating the blood/brain barrier and entering the central nervous system.  The Transplant Fellow explained it as follows:  There are very few or no cells in the spinal fluid sac that surrounds the brain and spine.  You usually don't find any white or red cells in there.  With this mutation, the blast cells CAN penetrate this barrier and can be found in the spinal fluid.  AS A PRECAUTION, they will do a "lumbar puncture" or spinal tap to collect spinal fluid for testing, to see if it tests positive for blasts.  As an additional precaution, they don't wait to get the results back to treat this area.  Instead, they need to replace the fluid they remove with something else to avoid a spinal headache, so they insert a type of chemotherapy into the spinal fluid to kill any potential blasts cells there.  Of course, we already know that Todd has the TP53 genetic mutation that makes it more resistant to treatment and he has the IDH1 mutation. 

To treat the AML, Dr. Benton and his colleagues recommended using a study trial regimen available only at MD Anderson. (Trial #2012-1064).  Instead of the standard of care treatment given everywhere else, known as the 7 + 3, where they give 7 days of cytrabine and 3 days of daunorubicin, they will use four drugs in a 5 + 5 day trial treatment called Decitabine + CIA. 

The first 5 days they will give him a drug called Decitabine a Hypomethylating Agent (HMA) used to prime the leukemia cells to accept the other drugs.  Then they will give the CIA:
Clofarabine 5 days, Idarubicin 3 days, and Cytarabine (Ara-C) 5 days.  The Idarubicin is given less days because it poses the most toxicity, especially to the heart. 
According to the Trial information posted on clinicaltrials.gov, the following regimens are possible:

Drug: Decitabine     Purpose:

Other Name: Dacogen (DAC)

Purpose: Designed to damage the DNA (the genetic material of cells). This may cause cancer cells to die. 

Phase I and II - 20 mg/m2 by vein daily for 5 days (days 1-5)

Drug: Clofarabine

Other Names:

• Clofarex
• Clolar

Purpose: It is designed to interfere with the growth and development of cancer cells.

Phase I Starting Dose - 15 mg/m2 by vein daily for 4 days (days 6-9)

Phase II Starting Dose - Maximum tolerated dose from Phase I (number of days selected based on Phase I portion).

Drug: Idarubicin

Other Name: Idamycin

Purpose: Designed to damage the DNA (the genetic material of cells). This may cause cancer cells to die. 

Phase I and II - 10 mg/m2 by vein daily for 3 days (days 6-8)

Drug: Cytarabine

Other Names:

• Ara-C
• Cytosar
• DepoCyt
• Cytosine Arabinosine Hydrochloride

Purpose: Designed to insert itself into DNA and stop the DNA from repairing itself.

Phase I and II - 1 g/m2 by vein daily for 5 days (days 6-10).  Clinicaltrials.gov, 2016.

                    

We have not been told whether he will be part of Phase I or .  The whole intention of this "induction" chemotherapy is to get the Leukemia into remission.  The most upsetting revelation of this remission is that with AML, remissions are short-lived, and each time there is a relapse of disease, another remission will be harder to achieve and will be of a shorter duration.  The first remission after the first induction usually lasts <6 months.  According to Texas Oncology, "If a complete remission is achieved and no further therapy given, over 90% of patients will have a recurrence of disease in weeks to months."  (Texas Oncology.com 2016).  Because of this realization, we have agreed with Dr. Benton that Todd will have this induction with the intention of pursuing a Second Bone Marrow Transplant as soon as possible. 

It can be difficult though to get a non-related donor lined up in a short period of time.  When Todd had his first transplant, he was fortunate to have a perfect match with his brother Tom.  However, since Todd relapsed so quickly after the transplant, they would rather use a non-related matched donor this time.  Dr. Benton brought in a transplant doctor and a fellow here at MD Anderson to consult in the matter.  They came by today to discuss transplant options.  It was his opinion that finding a non-related donor from the National Bone Marrow Registry who would be ready to donate, (Be the Match) may take up to 3 months!  It was his opinion that we did not have that long to wait if at all possible. 

After the first induction, they like to wait for the bone marrow to recover but not long enough for the cancer to return.  In this case, they could do a second round of chemo called "consolidation" until the bone marrow donor is found and ready to donate.  For this reason, he was very interested in screening our three kids to see if one of them would be a haplomatch (half full match).  Abby, was screened at registered when S.A.M./Sharing America's Marrow came to the University of Cincinnati to recruit donors during her freshman year.  She actually volunteered with Sam and her sister during their visit. 

Consolidation chemotherapy -

Chemotherapy given once a remission is achieved. 

The goal of this therapy is to sustain a remission. 

Consolidation chemotherapy may also be called intensification therapy. 

This term is commonly used in the treatment of acute leukemias. Chemocare.com 2002-2016

We would have the option to have the transplant here at MD Anderson or back at the Cleveland Clinic.  However, traveling after induction can be risky.  In addition, MD Anderson has more options here than Cleveland does.  They may have different pre-transplant conditioning and/or suppression therapy after transplant than Cleveland.  Also, if Todd was to relapse once again after transplant, there are more trial and treatments options here for him.  For this reason, we have asked Dr. Hamilton at the Cleveland Clinic to transfer the donor search from there to here.  The team here will continue the search, including sending screening kits to our three children. 

I took Todd downstairs today to the MD Anderson Hair Salon for Patients.  He wanted to have his head shaved before starting the chemotherapy.  The Salon is ran by the Volunteer Services Department, but the wonderful hair stylists there are paid by the department.  They will wash and style hair, or trim or shave hair and they assist with wig selection and styling.  Todd is still handsome without his hair!

After getting the insurance approval today, the trial nurse came by to discuss the treatment with us and have Todd sign the consent.  We knew we would work well together when she asked Todd if he was a Bengal's fan!  Her husband is from Cincinnati and she has been converted too! 

The thing I found the most upsetting when discussing Todd's treatment was the topic and discussion of putting Todd is "Protective Environment" after the first round of chemotherapy induction.  It is something that is only done here, because they have always done it this way.  They gave us two options: the Protective Environment or Discharging him on the Fast Track.  From one extreme to another.  PE is when they put patients  50 years or older with AML just off of induction therapy in a special room for over 20 days, where there is no bathroom, a special HEPA filter, no family allowed inside, etc. to help protect the patient from getting infection and being able to detect and treat a fever or infection right away.  I would only be allowed to come visit in a visitor's room connected to Todd's room where I could speak to Todd only through a glass window between.  I could not touch him or help him.  But, doctors, nurses, cleaning people, and the food service people would be allowed to come and go with proper attire (shoe covers, protective clothing covers, masks, and gloves) but not any family!   There is no real research or data that "proves" that PE is more effective. Even though Todd is only 47, he is close enough in age for them to think PE was a good idea.

I thought it was a bad idea, because of the lack of mental and physical support the isolation would cause.  Todd and I have been through a lot together and I can't imagine not being there to help him, comfort him, hug him, and encourage him.  He felt the same way.  If he goes into transplant after treatment, he will have to stay in the hospital another 30 days. 

On the other spectrum, the Fast Track program would allow Todd to be discharged right after chemo induction and then he would have to return every two days for treatment like transfusions, check-ups, etc.  We would have to stay within 10 minutes of the hospital in case Todd spiked a fever over 100.9; he would have to brought in within 30 minutes even if it was just a neutropenic fever and not an indicator of an infection.  Apparently, an infection can take hold fast. Any fever over 100.9 would always necessitate being admitted.  It is not uncommon for these patients to be admitted several times during the Fast Track process.  He would have to be readmitted at some point when the transplant conditioning begins and/or if consolidation therapy was needed (not sure about this). 

This made the decision difficult.  Finally, we got a social worker to come in and talk to us.  She said that we had the right to say what we wanted to do and that some patients in the past was able to do a "modified environment" where we could just stay in a regular room like now on the leukemia floor.  She said she wishes she would have been here when the doctors were rounding and she could have told them of this other option.  Today, when the doctors rounded, we just told them that we didn't want Todd to go to PE; instead we preferred a modified environment.  So, hopefully, this has been accepted.  We will see. 

The social worker gave me a substantial list of places to stay nearby.  I have to start calling right away to get on several waiting lists.  Even if we don't do the Fast Track option, we still will need housing post-transplant. 

I know I am probably forgetting to include so many other things but that is all I have time to blog now.  I will say that Dr. Benton hopes that the size of Todd's spleen could start going down soon after he begins the induction therapy.  This would be a big bonus!  He would be able to get off some of the major pain medicine he has been on the last couple of weeks, just to cope with the pain of the enlargement. 

It is late, and Todd was able to start his first round of Decitabine tonight about 9:00 p.m. DAY 1 Cycle 1. They started him on 42 mg (amount adjusted according to Todd's weight) at 50 ml/hour.  No transfusions were needed today, Wednesday October 6, but he had one unit of blood yesterday, Tuesday, October 5, 2016. 

References:

Chemocare.com  2002-2016.  "Chemotherapy Terms." Cleveland Clinic. Web. Retrieved from: http://chemocare.com/chemotherapy/what-is-chemotherapy/chemotherapy-terms.aspx

ClinicalTrials.gov.  April 26, 2016. "Decitabine Followed by Clofarabine, Idarubicin, and Cytarabine in Acute Leukemia." Trial Identifier: NCT01794702.  Web.  Retrieved from: https://clinicaltrials.gov/ct2/show/NCT01794702

Texas Oncology.  2016. "Acute Myeloid Leukemia Induction; Overview".  Web. Retrieved from: http://www.texasoncology.com/types-of-cancer/leukemia/acute-myeloid-leukemia/acute-myeloid-leukemia-induction

University of Texas, MD Anderson Cancer Hospital Webpage.  2016.  Trials.  "Study #2012-1064 Phase I/II Study of Decitabine (DAC) followed by Clofarabine, Idarubicin and Cytrabine (CIA) in Acute Leukemia." Retrieved from: https://www.mdanderson.org/patients-famiy/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2012-1064.html