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

MORE TRANSFUSIONS MAY BE NEEDED AS COUNTS REMAIN LOW

My last post left off with Todd going into the local oncologist/lab to get his routine labs done for his trial drug AG221 Day 15, Cycle 17 on July 27, 2016. We were anxious to see if the transfusion he received the following Thursday had helped to boost his blood counts.

Unfortunately, they did not. The results showed his Hemoglobin at 8.3, whites 

at 1.4, ANCs at 1.1, and platelets at 46,000.  This means he is once again close to needing another transfusion (hemoglobin < 8.0). This is also the lowest his immune system (reflected by the white and ANC counts) has been since he was in the hospital last October 2015. What does all of this mean for everyday living?  Taking extra precautions with activities like shaving with a razor (low platelets), living with severe fatigue, watching for a fever, and being cautious with what he eats (washing fruits and vegetables well, avoiding raw or under-cooked fish or meats, etc).  But worst of all, being severely anemic means  transfusions. The transfusions themselves aren't necessarily bad for him, even though they can result in a build up of iron, but they are inconvenient and often a multi-day process. First, getting labs to see if he needs a transfusion, then getting typed and screened, then setting up the transfusion at the hospital, and then the almost day-long process of getting the 2 units of blood. The depressing cycle  of fatigue and knowing your counts are dropping and hoping the transfusion will provide the much needed energy can be draining. 

I talked to Todd's bone marrow transplant Doctor this morning to get an idea of the game plan and where we go from here. She informed me that they ran a complete viral panel with his blood work and everything came back negative. If he had something bacterial he would have a fever. And the last bone marrow biopsy showed no increase in blast cells. 

This was her opinion:  Schedule appointment with Pulmonary Specialist to look at lungs, since he is still struggling with the cough. Next, deal with the anemia with transfusions until we know what's going on. I agreed with her that it may take some time to see if his complications and anemia is the result of "the disease evolving." While the AG221 is helping to keep blast counts low, it may not be keeping the disease from causing the anemia and low blood counts. My daughter Abby had brought up a good suggestion, which I put to her: "Would it help/be an option to increase the dose of his AG221?"  It was something she hadn't considered, but said it could be an option, but, if he is already suffering from the side effects of nausea, diarrhea, and high liver enzymes, that increasing the dose would likely make all of these side effects worse.  Not to mention, she would have to approach the drug company and ask it was even an option.

She had just received his cyto-genetics report back from the most recent bone marrow biopsy, and while there was no real major changes or new chromosomal abnormalities, she had noticed an increase in the number of 5q abnormalities, which could be a reason for the lower counts.  She said that about 15/20 chromosomes observed had 5q deletions. She said she may consider the idea of switching Todd's medication from AG221 to a medication used to treat MDS patients with the 5q deletion called Revlimid.  Since the transplant failure, we knew he had this option in our back pocket if we needed it.  It might be time to pull it out and use it.  Unfortunately, it is very unlikely that he could continue on the AG221 and just in the Revlimid, because it would be against the conditions of the trial study.  But, if Todd would become transfusion dependent, and the AG221 was deemed no  longer effective, then this is another good option for him.  We all have been so bullish on AG221 because it has worked so well for him, so we aren't going to let it go until we know for sure that it is not helping him.  I've even considered calling Dr. Eytan Stein at Memorial Sloan-Kettering in New York again if we can't get some answers, to see what he thinks.  Whatever it takes; that is what we will do!

I'm trying to make him rest and take it easy.  It has been so blistering hot in Dayton the past week, that being outside is more  difficult for him. I'm  getting good with the Zero-Turn Lawnmower!  We are planning on taking it easy this weekend, plus, Hannah Lewis is getting wisdom teeth taken out on Saturday!  So, I'll be nurse Kimberley to the invalids this weekend! (just joking). 

Todd will go get his blood counts checked at the beginning of next week, if he thinks he needs a transfusion.  I have to say I was impressed with his nurses at Soin Medical Center.  They sent him a personally signed card wishing him to get better!

The next trial appointment at the Cleveland Clinic will be August 10, 2016.  They have a full day of tests already scheduled.  Maybe we will find out something more by then.  We wanted to try to take a family vacation before the kids go back to college and school, but its not looking good since we just don't know how he is going to feel and if will continue to need transfusions.

Thanks for your support.

MORE INFORMATION:
About revlimid: https://www.drugs.com/revlimid.html

The Waiting game...

It's Wednesday, February 25, 2015, five days after receiving the preliminary bone marrow results. We sit in the hospital while Todd gets blood and platelet transfusions, with no new from the doctors at the Cleveland Clinic about what the next hurdle in treatment will be. I say hurdle because that best describes our journey right now. His disease continues to present new hurdles and we try to pace ourselves in between them, waiting for the right time between strides to make the leap to jump over the next challenge.

I understand that his BMT doctor is trying to make the best "informed" decision she can, which may include some waiting on further test results, but I can't help but feel sad, tired, and anxious as I watch my husband get sicker by the day. With every transfusion he receives, more iron builds up in his blood making it harder on his organs. Every day with neutropenia, low white counts and low ANCs he is at risk for infections and fevers. Every day with low platelets he risks bleeding and hemorrhages. While the doctors may be comfortable with the neutropenia and cytopenias, I am not.

Todd went to see his local oncologist yesterday and have his blood drawn. Even though I shouldn't expect higher blood counts, I still hold out the hope that they will be a little better than before.   Instead, I can't help but curse when they come back so low. For those of you who follow his counts, his hemoglobin was 7.6, whites at .300, ANCs at .2, and platelets at the threshold for transfusion at 10,000. 

I have spent the last few days in tears. I'm sad, frustrated, angry, and exhausted. Todd?  He's doing good!  He doesn't complain about his fatigue, nausea, or even that he has been inflicted with this disease. He's my inspiration!  

For those of you who have been asking about my job search, I don't have much of an update. I haven't even been subbing much lately. I've been so tired from just keeping up with the girls' schedule, homework, helping out with additional chores so Todd can rest more, and trying to be there to go to his appointments. It only took having Todd admitted to the hospital a few weeks ago, for reality to hit me. Getting a full time job right now probably is not the best idea. I go through periods of really wanting to get a job to help with our finances one the one hand but on the other, I realize that I wouldn't be there to help him if I was working full time. Someone would have to go with him to Cleveland and his appointments, but I want to be there to do that. I know his history and can help him more as his wife. 

If the right job opportunity came up, I would likely take it, but I haven't even had any calls from the applications and resumes that I have already put out there. I'm convinced that it is going to take someone helping me by word of mouth about a job opportunity, before I'm going to find something. I'm even thinking about applying for secretarial jobs for now. 

I'm at the point in my master's program where I need to fulfill my practicum requirement. Some of these practicums offer a stipend or hourly pay. So, I plan on trying to apply for one starting in the summer or fall. Unfortunately, there aren't many places offering them in the area. I may have to approach someplace locally or find a paying practicum that will require me to travel to.

It is really hard to plan anything too far in advance, not knowing how Todd will be or what his treatment will be. When? Where? Home or Cleveland? The same goes with selling the house. I finish my semester March 22. After that I'm hoping to begin working on getting it ready to sell. So, for a few of you who offered to help me clean out and box up, be ready for me to call. 

Other financial updates, a The Cleveland Clinic Foundation has once again generously agreed to help with our insurance premiums for two more months. But I'm afraid we've about exhausted their help. Our pastor has called, on behalf of our church, offering some help with utility bills. Several of my mom's friends have generously donated to the Todd Cade Care Fund at PNC bank. And we have someone who blesses us with a gas card almost every month. We are so grateful and flooded with joy at the unexpected and loving gifts from friends, family, and anonymous "angels." I didn't get to share the tears of joy I cried, when I found out that someone helped sponsor Ellie in paying the rest of her volleyball fees, on top of the generous advertisers that helped us.  We didn't have to pay anything out of pocket! This sponsor choose to remain anonymous, but if they are reading this post, please accept our deepest thanks and we pray God will bless you for the joy you gave us!  

We continue to do our best to be good stewards of every gift. For those who would like to help in other ways we do have a few needs. First, if someone could recommend a family counselor who is willing to take Anthem insurance, we would like to schedule some counseling. Throughout this entire journey, we haven't had the opportunity to get family counseling. This kind of thing would usually be offered to families for free at a Cancer Center that offers social services, but there are none in the Dayton area. The closest center to us is in Cincinnati. Of course, in Cleveland there are several locations of The Gathering Place where patients and family members can receive various services for free.

In addition, I could use a deep tissue message on my shoulders to help relieve stress and keep my sinuses clear. If anyone knows a message therapist who is willing to give me a discount under the circumstances, I would be grateful. Just by sharing this post, it may reach someone willing to help. This is another service that would be free to patients and family members at a cancer social services center, because insurance won't pay for it.

We could also use some help getting some repairs made to our house. We need someone that does a good job on fixing drywall, nail pops, and painting. Todd started a project laying pavers over our back patio concrete that needs finished when the weather gets better. I can't imagine him doing any physical labor anytime in the near future. So, you can help with any of these things starting in March, that would be a blessing. 

I'm going to close this post for now. I would like to leave you with the words and lyrics of Jeremy Camp's song He Knows. In an effort not to violate copyright laws, here is the link:
 https://www.youtube.com/watch?v=OsccUg4TDd8

God bless 

3rd Round of Chemo starts with Neutropenia

It's been almost a week since I've had the chance to update the blog!

APPOINTMENT WITH LOCAL ONCOLOGIST: 

Todd's Thursday, February 5, 2015 appointment with the local oncologist went well. His doctor hadn't left for his trip to climb Mt Kilimanjaro yet (leaves on Sat). Todd's counts were stable and no transfusions were needed. His hemoglobin went to 9.1 and his platelets to 29,000 which was good, but his Whites and ANCs were still low. 

We talked about whether to proceed with the Vidaza on Monday or not. The Dr. said that his BMT doctor in Cleveland is the quarterback calling the shots, which in her opinion is treating if ANCs at .500 or greater. The local oncologist said he wasn't quite comfortable with that and likes the ANCs to be around 1.0 but has proceeded with counts of .7 or .8 in special circumstances. 

Todd had a good day on Friday. Saturday we got up early and took our daughter to her second college visit in Columbus, OH. While the campus we toured was compact, there will still a good amount of walking and stairs to climb.  It was  a long day. Even though he was wiped out, he was glad he got to go.

On Sunday, I made him stay home to rest while I took our youngest daughter to a volleyball tournament. These things are crazy!  They are fun to watch, but they are all-day!  We left at 7 am and got home at 8:30 pm!  It's loud with screaming, cheering, and whistles from about 8 courts blowing at every point!  You're in one building with about 300 people, so it's not an ideal place for him to be. I was happy he trusted my advice as his caretaker to stay home and rest up for his chemo treatment the next morning. 

Needless to say, I was exhausted and I'm healthy!  So Todd went to his chemo appointment alone so I could sleep-in.

 FIRST DAY OF CHEMOTHERAPY: MONDAY, FEBRUARY 9, 2015

His first chemotherapy appointment routinely starts with a CBC to check blood counts before starting the chemo. For some reason (Todd said they weren't busy), his regular nurse at the local Cancer center DID NOT wait for the results and started treatment anyway. Todd didn't stop her. Once the treatment was already running, the results came back with his ANCs at .300!  Todd told her then that he wasn't supposed to get the chemo with his ANCs below .500, but she said there was nothing in his file that stipulated that. I would think she would have known better! She should have waited and asked the doctor on call or something before treating!!! (And the doctor wonders why we prefer treatment at the Cleveland Clinic).

I was so upset and concerned when he got home and told me what happened. He was upset but not for the same reasons: he felt like what choice did he have?  He could not get the chemo and then risk the disease growing stronger and jeopardizing the second transplant or he could get the chemo and maybe get an infection or neutropenic fever.

I think this has been the most devastating part of battling MDS. You have so few options available, and most are just the best they know of or have. That is why the research trials are so important. There are a few treatments they know that work, even in trials, but nothing is long-term. Oh, how we need to pray for a new cure!  The only "curative" long-term treatment is the bone marrow transplant and we have learned, there is no guarantee that it will work. 

I stay in touch with several patients and families we met on the transplant floor while Todd was at the Cleveland Clinic.  Very few are doing well.  One friend who had MDS and stopped responding to Vidaza, had her transplant but has had complications with her chimerism too.  It was going in the right direction at first (her brother's donor cells were increasing), but then it started to reverse (her cells were increasing while the donor cells were decreasing).  Her two bone marrow biopsies post-transplant have confirmed that no disease is present (PTL!), however, they still needed to boost the number of donor cells.  She had a perfect match donor in her brother and also had no Graft versus Leukemia Effect after transplant.  She had to go in last week and have a new port put in her chest, and then received a mini-Donor Lymphocyte Infusion  (DLI) from additionally harvested stem cells from her brother.  No immosuppressions are given, so she is at risk of developing a serious case of Graft versus Host Disease (GvHD).   They are waiting for two weeks or more to see what happens.  If there is no severe GvHD, then they will give her another mini-DLI from additional stem cells they froze.  This process may have to happen several times.

Another friend contacted Todd this week to say he was back on the Transplant Floor with a case of RSV (Respiratory Syncytial Virus), which I have heard of in babies and the elderly.  And another friend has called for the last two weeks with updates about her husband.  His first biopsy was clean and his chimerism was at 98%  everything was going great, even though he had not experienced any GvL Effect from his unrelated perfect matched donor.   Then he got Cytomegalovirus (CMV), which immune-compromised people are highly susceptible to and his numbers dropped.  They treated him with strong antibiotics and it went away, but they couldn't get his counts to stay high enough to avoid weekly transfusions.  He was there for transfusions and a second biopsy to see if his Acute Myeloid Leukemia had returned.  He passed out and they got him in a wheel chair but soon after, half of his face started to droop and he couldn't remember the month or date.  They sent him to the emergency room, fearing he had had a stroke, but they found out that he had a Intracranial hemorrhage instead likely caused because of his persistent low platelets.  They had to take him to surgery immediately to drain the blood and relieve the pressure from his brain.  He was admitted with a drainage tube for several days afterwards getting platelets transfused every day.  While he was there, they took samples from his peripheral blood to see if his disease was back and found blasts cells there at 10%.  They started him on Vidaza the next week and I think he has gotten to go home for now!  

I had heard that there could be internal bleeding from severely low platelets, but I didn't know anything about Intracranial hemorrhages.  I did a little research and learned that this is not uncommon with patients with hematological  diseases, especially ones that cause low platelets (>10,000 or >20,000).  According to research, it is the second most common complication after infection. (Chen, 2012, background).

As you can tell, its not just Todd that is struggling post-transplant.  

Back to the appointment:

I put a call into his BMT Doctor in Cleveland this afternoon, and she confirmed that they are more aggressive at the Cleveland Clinic and she would have told them to proceed with the Vidaza had she been there anyway.  She did advise that Todd start taking his Cipro antibiotic right away, watch what he eats observing a neutropenic diet  (See http://www.lls.org/diseaseinformation/managingyourcancer/treatmentnextsteps/foodnutrition/neutropenicdiet/) within reason, and for him to try to be content staying at home, or at least limit being around crowds because there is so much still going around right now that he can catch.

The good news was his hemoglobin was 9.0 and his platelets were at 81,000. It looks like he received a boost from the transfusions and maybe a bounce from the second round of Vidaza.  At least these higher counts may help him have some energy and keep any serious threat from low platelets at a minimum for now. 

We are back to taking his temperature twice per day, watching for any signs of infections or neutropenic fever.  The doctor reiterated the need to go to the emergency room with any fever over 100.4.

So, please pray he gets through this week without too much fatigue, without a fever, and without any infections.   

Read more:

Chen, Chien-Yuan, Tai, Chan-Hwei, Cheng, Aristine, Wu, Hung-Chang, Tsay, Woei, Liu, Jia-Hau, Chen, Pey-Ying, ... Tien, Hwei-Fang. (2012). Intracranial hemorrhage in adult patients with hematological malignancies. (BioMed Central Ltd.) BioMed Central Ltd. Retrieved from: http://www.pubfacts.com/fulltext/22931433/Intracranial%20hemorrhage%20in%20adult%20patients%20with%20hematological%20malignancies.

Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd.