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

COUNTS DROP FOR UNKNOWN REASONS; TRANFUSION NEEDED JULY 21, 2016

I hate that I tend to blog only when there is a major change in Todd’s condition, but when he is feeling well, we are busy trying to enjoy life!  Unfortunately, it has been since May since I have provided and update, and once again the news warrants the update.

Todd’s condition on the trial drug AG-221 (Agios/Celgene) has been stable.  He hit end of the one year anniversary being on the medication on March 23, 2016.  He had a bit of allergy symptoms in early spring April/May 2016, with a runny nose, sneezing, cough, etc.  We attributed this to the fact that the grass was being mowed often and the spring was wet. 

He felt well enough to visit his brother Ted in St. Petersburg in mid-June, but he was still suffering from allergy symptoms.  He saw his Bone Marrow Transplant Doctor at Cleveland Clinic every month on Day 1 of his drug cycle, and continued to get blood work drawn locally on his Day 15.  The doctor gave him the “thumbs-up” on his June 13 visit to fly to Florida and back for the short visit. He came back still feeling symptomatic, mostly still suffering from a lingering cough. 

He was feeling somewhat tired, but was able to get around most of the day just fine, but with a nap (it isn’t unusual for him to need a nap). We had missed a family reunion in Tennessee in June and wanted to go down to visit the weekend of July 4.  I haven't had a vacation in over two years! He had blood work drawn before we went on Day 15 of Cycle 16, which was June 29, 2016.  Since it was drawn at a local lab, he didn’t get the results until we were driving down to Tennessee on July 1.  All of his counts had dropped.  This was the first time in many months that there had been a significant, noticeable drop in counts.  His Hemoglobin was down to 9.0, white counts to 3.2, ANCs at 2.5, and platelets at 65,000.  Just to give you some perspective, his Hemoglobin had been running in the 10s and 11s, Whites and ANCs in the 4s, and platelets as high as 75,000. 

This was a shock to us; this meant he was only 1 point  away (<8.0) from needing a blood transfusion!  He hasn’t needed a transfusion since he was sick with the pneumonia and cold last October 2015.  Even though his counts had starting dropping slightly before this, we were not concerned, because we all understand that there is often some slight variation from visit to visit and from one lab (Cleveland Clinic) to another (Local Compunet). So, we attributed the slight differences in the differences in labs.

We tried to make the most of our trip to Tennessee, however, we quickly noticed that Todd was getting tired very easy.  When we returned, he didn’t seem well rested and still had that nagging cough.  So I ended up emailing his trial nurse at Cleveland (so did he!) the next morning to let her know.  Todd’s trial appointment was already set for the upcoming Wednesday, July 13, 2016 for Day 1 of Cycle 17.  So, they set-up at Chest CT in addition to his bi-monthly bone marrow biopsy, Pentamidine breathing treatment, EKG, and Echo cardiogram.  

The doctor had asked extensively about his cough and some tightness he was having in his foot/ankle before she gave us the news about the low blood counts.  We both felt something was wrong, and knowing her well, felt she didn’t want to give us the bad news. Then she let the bomb drop; the blood work for that day was back and his hemoglobin had dropped even more:  Hemoglobin down to 8.1, Whites #, ANCs #, and Platelets.   Basically, the initial view of the CT scan looked fine, and she didn’t have any idea why the counts were dropping.  We discussed having Todd tested for CMV or Cytomeglavirus which can affect post-transplant and immune-compromised patients, but she was hesitant to this.  I knew why.  She wanted to wait to see what the results of his bone marrow biopsy were.  If the blast counts, were up, we would have our answer.  This scared us; the trial drug has been working so well!  She said that it was possible that he was sick with a virus, and that the only time his counts had dropped like this (on the trial drug) was last October when he had the cold and pneumonia.  So, the possibility that he was sick, was a good one.  We left a little deflated. 

They don’t transfuse Todd until his hemoglobin drops below 8 and it was already late when we got done with all his appointments.  There was no treatment appointment made to give him a transfusion while he was there.  We would have to follow-up with his local oncologist. We didn’t end up getting home from Cleveland that night until after 11:00 p.m.

So, the next day, Thursday, he was still very tired.  His trial nurse called in blood work orders to his local oncologist and he went in on Friday, July 15, 2016.  We also asked if they would go ahead and have the blood drawn for the CMV test.

Before I go on, I have to tell you about our ObamaCare health insurance nightmare.  We received a letter from our Healthcare provider, In Health Mutual, an Ohio PPO created after the Affordable Care Act was passed in June saying that they were going bankrupt and that if we didn’t want to lose our tax credit/subsidy we had to select a new health care provider by July 1, 2016!  So, Todd had to go back onto the Government Healthcare Marketplace website and try to find insurance that the Cleveland Clinic and his doctor accepted. He found one: An Anthem BC/BS Silver PPO program, which he selected.  We paid for the new premium for the Anthem and had the information for the new insurance before Todd’s appointment at Cleveland Clinic on July 13, 2016, only to find out that IN Health Mutual withdrew almost $1,000 from our checking for the July premium-even though we switched healthcare companies!  We spent hours trying to get it corrected and to get our money back.  The input operator at the Marketplace also accidentally cancelled our Dental Insurance, so, we had to cancel Todd and Abby’s dentist appointments for that week and try to get our Dental re-instated!

Here’s the kicker, we realized when Todd went into see the local oncologist’s PA to have more blood work on July 15, that they didn’t accept our new insurance!  Basically, we would have to pay that bill out-of-network!  This is already in addition starting over on our yearly deductibles half-way through the year, when we had already met our deductibles on the prior In Health Insurance!  

Now, back to Todd.  The blood work came out about the same, Hemoglobin was still at 8.1 and the platelets had gone up slightly, but the PA decided that Todd could wait to have a transfusion and sent him home.  I called the trial nurse that day and asked if the preliminary bone marrow results were back; that it would ease our minds to know the results.  She sent him the results and Thank God, the blasts were still only at 1%!  This was great news!  The cancer had not been ratcheting up, but something unknown then was causing the drop in counts. 

By Tuesday, July 19, 2016, Todd was still very tired and his cough still persisted.  The trial nurse sent orders to the lab, but no one there was certified to take blood from his port, only from his arm and by this time, his arm was getting bruised.  I knew we needed to have his blood drawn again, and something needed to be done about getting him a new hematologist/oncologist locally.  So, I started calling.  First, to the new insurance company, Anthem.  They gave me 2 or 3 names, but only two were actually hematologists.  I also asked about what hospitals in the area were covered because he had always gone to Miami Valley Hospital in Dayton for all of his transfusions.  I found out that Miami Valley was no longer on our list!  Only the Kettering Medical Network of hospitals.  I was upset at first, not sure if any other hospital had their own blood bank nearby.  I also asked Anthem if Cleveland Clinic and Dr. Hamilton was covered and she said no!  I wanted to throw-up in my trash can I was so upset! So, I called the Government Healthcare Marketplace back and they said both were listed as providers! 

I called Dr. Amanda Laubenthal of Cancer Specialist of Greater Dayton.  They were very nice and I began to relax. They had an office in Beavercreek near Soin Medical Center, just minutes from our house.  The doctor was willing to see him right away, but they needed his medical records (at least his recent reports).  So, I called his trial nurse and Cleveland and she was able to send them electronically before we got off the phone!  She also told me that the CMV test had come back negative.  So, one more thing we could rule out!  Dr. Laubenthal’s office contacted Todd and he had an appointment to see the doctor and get blood work for Wednesday afternoon, July 20, 2016.  I was so relieved!  I didn’t get to go with him to the appointment that day because I had to work, but he liked the doctor and the blood work showed that his hemoglobin had dropped to 7.5, whites to 2.2, ANCs to 1.7, and platelets to 66,000.

At first he told me over the phone that he wasn’t going to get a transfusion even though his hemoglobin was under 8.0.  He was just going to “monitor himself” and get blood work next Wednesday!  I was livid!  I tried to convince him that he would likely feel worse and that come the weekend, he wouldn’t be able to get a transfusion and would have to wait until the following Monday to get in.  I didn’t understand why he was so opposed to getting transfused.  He told me he was going to go to SAMS Club to pick up some things we needed.  In about half an hour later, he texted me and said he was going to go back to the Dr. Office/hospital to get “type and screened” for a transfusion.  They had just closed the office, but lucky for him they let him come in and by 5:00 p.m. they had set up an appointment for a transfusion of 2 units of blood at Soin Medical Center for the next morning, July 21, 2016. I’m not entirely sure what made him change his mind so quickly, but if I had to guess, I would say that once he got to SAMS Club and had to walk so much, he realized how exhausted he was and that he had better go get the transfusion!  I knew he was stubborn, but… Anyway, I was just grateful that he changed his mind.

I had to work the next day, but I took a long lunch to go check on him during the transfusion.  I told Todd to make sure the blood they gave him for the transfusion was “Irradiated and Leucocyte-reduced, and CMV negative.”  He asked, and they assured him the first unit they were giving him was.  When I got there, they were just finishing the first unit of blood and getting ready for the second unit.  While they were getting it ready, I asked if it was Irradiated, Leukocyte-reduced, and CMV Negative, but they couldn’t find it labeled anywhere on this unit that it was CMV Negative.  So, I asked them to wait and ask someone.  This is a bit technical, but basically, people who have caught CMV (the virus that can cause Herpes) produce antibodies to fight against it.  Once you have been exposed to CMV, it can stay in your system forever, even if it stays dormant.  So, if the antibodies are present in the blood, then they know the donor has been exposed to the CMV.  We had just confirmed that Todd didn’t have CMV, nor did we want him to get it, so I wanted to be careful.  Most of the time, if the blood is irradiated it kills most germs or viruses.  In addition, if it is leukocyte-reduced, it means that they have tried to take out most of the white blood cells, where viruses like CMV reside.  This is likely good enough, but I knew that since they were able to screen for it now, and since the first unit was CMV negative, why shouldn’t the second unit of blood be?

So, they halted the transfusion and waited from word from the blood bank and the local oncologist.  Meanwhile, I called Dr. Hamilton, his Bone marrow transplant Doctor in Cleveland and his trial nurse to ask.  I got patched through to Dr. Hamilton and she said it would likely be ok, however, Dr. Laubenthal said No, just order new unit of blood that was marked CMV negative.  So, luckily Soin had more blood on stand-by and Todd only had to wait another 30 minutes for them to get the second unit of blood and start the transfusion back up.

I was glad though that I had a chance to talk to Dr. Hamilton, who said she was at a loss for what was causing the drop in counts since the bone marrow blast counts were low and the CMV test came back negative.  They were trying to come up with other possibilities and decided that he should be tested for RSV.  So, they contacted Dr. Laubenthal's office and had the nurses collect a sample (through the nose) while he was there.  The transfusion was long as usual, but helpful.  

I know medicine is a process of elimination, but it can be frustrating not knowing what is causing the drop in counts, even though all the tests for various viruses having been coming back negative, which is good.  The alternative of it not being an illness or virus of some sort, is too upsetting to contemplate at this point.  

He is scheduled to have blood work done for his Day 15, Cycle 17 done on Wednesday, July 27, 2016.  So, we are going to see how much this transfusion helped, get the results back from the RSV swab, and go from there.

We appreciate your prayers and support as always.


WANT MORE INFORMATION:
Cytomeglaviru (CMV)s: http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

RSV:
https://www.cdc.gov/rsv/
http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514