Day +97: Cleveland Clinic Appointment Results December 22, 2014

Todd's treatment appointment started with the routine vitals and blood work.  His counts were down a bit more today, but this was expected after the week of chemotherapy.  His whites were at 1.54 (1,540); Hemoglobin 9.4; and Platelets down to 20,000.  These counts were strong enough to alleviate the need for any transfusions.

We ran into a friend and former transplant patient and her husband in the doctor's waiting area.  Today was her last appointment!  Her chimerism was struggling a bit, but her counts were much higher than Todd's.  Her bone marrow biopsy came back clean; no signs of disease!  This was such a praise!  I told her how hard to was to see other patients from the transplant floor reaching their 100 day mark and getting to end transplant follow-up treatments, when we are back to where Todd started before chemotherapy and the transplant.  She empathized and told me that although it may seem that the marker to ending treatment seems to keep getting pushed backed for us, we just need to concentrate on getting to the same end result: recovery and remission.  It might just take Todd longer to get there.  I found such wisdom in this!  We don't understand why God is taking Todd down a different path, but I'm sure he has a reason (His ways are higher than ours).

We saw a different doctor today, an associate of his regular BMT doctor, since she is on vacation.  Todd's nurse coordinator also joined us to give us the latest news from his doctor.  He examined Todd as usual looking for any sign of Graft versus Host Disease rash.  I asked if there is still a good chance that he can get GvHD and he said absolutely yes; with the mixed chimerism, there is still a chance.  This would be ideal!  If Todd's body could develop a bit of Graft versus Host Disease it would help attack and kill his diseased bone marrow and give his brother's donated marrow the upper hand.

They took him off his magnesium tablets, which is normal a few weeks after stopping the Tacrolimus.  The Tacrolimus causes low magnesium, therefore the added supplements.  So, without taking the Tacrolimus for several weeks, he shouldn't need it anymore.  He does still need to continue with the rest of his medication until further notice.

Todd's cytogenetic report was back from his bone marrow biopsy.  It did show one chromosomal abnormality: a deletion in chromosome 5 [46,xy,del(5)(q13)(17), xy(3)].  He had this same deletion, along with three others earlier in the year in April and May, but they had gone away with the four rounds of Vidaza before his bone marrow transplant.  So, this one deletion has come back.

I asked what the next step was going to be, and his nurse coordinator jumped in and said that his doctor would like to get a couple rounds of Vidaza in before doing the second stem cell transplant.  So, we know that he will start his next round January 12, 2015.  I'm not sure if there will be a third treatment in February or if they will go on to the stem cell transplant.  They will be looking for a decrease in his blast counts when they do a follow-up bone marrow biopsy.

I also asked if there was a mistake in his chemotherapy, the trial medications, or the immunosuppression regimen during and after the transplant that allowed him to relapse.  I explained that I had heard of other patients having their own marrow suppressed instead of the donor and that his doctor was going to do this for the next stem cell transplant, and he said that this was not standard protocol for an initial BMT. He reassured me that it is standard procedure to always suppress the donor marrow because without immunosuppression  there would most definitely be severe GvHD.  I also asked if having the chromosomal deletions prior to the transplant contributed to the relapse of his MDS, and he said there is no way to know the answer to that question.  He explained that Todd's current doctor is trying to learn the answers to this question with her clinical trial.  In his opinion, nothing done during the first transplant contributed to the relapse.

We don't need to go back to Cleveland for treatment on Friday, December 26, as long as we arrange to have his CBC blood work drawn here in Dayton, and follow-up with any needed transfusions at a local hospital.  Our next Clinic appointments will be for treatment and seeing his regular physician on Wednesday, December 31, 2014, where we will discuss his latest chimerism results, the plans for future treatment, and to schedule additional appointments. 

His 100th day is Christmas Day.  Although we won't be celebrating a cure or remission, we will be celebrating life! 

Day +80 Good end of a discouraging week

Monday's doctor appointment (December 1, 2014) and blood work left me discouraged. His white counts dropped to 2,440; hemoglobin dropped to 9.9; and platelets to 32,000. This news combined with last weeks' chimerism results left the doctor concerned too. She said they were going to schedule a bone biopsy, but as of this posting we have not heard from the scheduler. The doctor also discussed using a dose of steroids if his chimerism continues to show increased cells from the original bone marrow and dropping counts. She said this treatment is "somewhat controversial" but didn't say why. 

While the latest chimerism results were not back that day, Todd received a call on Tuesday from his nurse coordinator that his cells from his original bone marrow had increased to 60% which means his brother's donated cells were only at 40%. On Monday, the doctor told Todd to cut back on his Tacrolimus/immunosuppressant to every other day starting Wednesday. However, after the chimerism results were back the nurse instructed him to terminate the medication starting that day. It is the doctor's hope that removing the immunosuppressant will stop suppressing Todd's new bone marrow and allow it to take over and increase. 

Tuesday night I had hit an all time low. I was so concerned that these results were indicating a bone marrow transplant failure or a relapse in his disease within the 100 day critical period. But after pleading with God to turn things around I began to believe it would happen. By morning, Todd and I were both on the same page. We were going to expect the best to happen!! We decided to ASK God for healing and a change in his numbers, we agreed to BELIEVE it, even visualizing Tom's donated marrow engrafting in Todd and seeing it make healthy cells. Then we both decided to have FAITH that Todd was going to be healthy again; that God was going to answer our prayers. 

Every day since I have been enjoying living life with Todd to the fullest. I decided that I would do whatever it takes to get Todd the best care and treatment even if it meant going to another Hospital for a second opinion (if it comes to that).

We drove up to the Cleveland Clinic for treatment on Friday (December 5) praying for good news with his blood work. We were not disappointed! Not only were his blood counts stable but we saw a slight increase in all three cells. White counts were 2,700. Hemoglobin at 10.0 and platelets at 33,000. No transfusions were needed. 

We are going to stay positive and expect the best!  We continue to pray. 

This week the same word keeps coming up from the scripture:

Be of good courage. And he shall strengthen your heart, All you who hope in the Lord. Psalm 31:24

Day +73: Mixed Chimerism Still an Issue

Todd with his Great Nephew Jeffrey at Thanksgiving, November 27, 2014

To follow-up to last week's post, we saw the bone marrow transplant doctor on Monday, November 24, 2014, with no real new news or progress.  After reviewing Todd's CBC blood counts, she concluded that they were stable with no significant decreases.  She had ordered another chimerism study to be drawn that day too.

It was difficult for her to hide her concern.  She recommended that Todd drop down another Tacrolimus pill, from 3 per day to 2 per day immediately. I asked her to give us some indication of her level of confidence that reducing the immunosuppressant would be effective.  She really hated to put a number on it, but I got her to say about  50%.  She tried to encourage us that she was really stepping up the process of removing the immunosuppressant (starting Day+62), because normally, they don't start tapering patients off this drug until they have reached Day +100 and even then they taper it slowly for months.

I confirmed that Todd did have a full intensity, myeloblative allogeneic bone marrow transplant and not Reduced intensity chemotherapy (RIC) which is more common with bone marrow transplant failures.  Additionally, she confirmed that even the timing and the type of medications used in the trial regime wouldn't have necessarily had anything to do with the mixed chimerism that Todd is experiencing. 

She also reiterated that she wants to move the date for a bone marrow biopsy.  Normally, this is done around Day +100, but she wants to do it around Day + 80, which would be around December 5.  She said then they could look to see how many cells are actually in the bone marrow, what their chimerism would be, if there was any presence of the disease (meaning his MDS or blast cells), and if so, at what percentage.

I also implored her to talk about what would happen if removing the immunosuppressant didn't work, and she did somewhat reluctantly.  The most likely scenario would be to harvest stem cells from Todd's brother again, but this time it would be done peripherally,which means they would remove the stem cells from his brother's blood instead of from actual marrow in the hip.  This process would require Todd's brother to receive medication injections prior to the harvest to boost the number of stem cells they could obtain.  However, the process would be much easier on his brother Tom than before.  This 45 second video shows the process: https://www.youtube.com/watch?v=2bTCSslVmKs or this 4 minute video: https://www.youtube.com/watch?v=pZgee5RWccs.  She did not say whether or not he would need additional chemotherapy prior to this transplant, but that they would use a different kind of immunosuppression therapy that would work to suppress Todd's bone marrow right away and not the donor's stem cells like  normal. 

I asked if Todd would be required to be admitted and stay again under close monitoring at the hospital for 30 or more days like before, but she just stated that the process wouldn't be quite as "strict."  She then responded that I didn't need to worry about it; that it was her job to worry about it.  I agreed that it was out of my hands and that she was the professional, but that I would like to have an idea of what might in store just in case, especially since I was planning on going back to work, or finding a job.  If all of this happens, I may not be able to work at all for some time. 

After his appointment, we headed home to spend an entire week there!  We were allowed to cancel his Friday appointment (since it would be the day after Thanksgiving) and return on Monday.  Todd did receive a call from the doctor though late Wednesday night, November 26, 2014, asking him to take away another immunosuppressant/Tacrolimus pill starting that day (cutting them down to 1 tablet/day). She was able to review the levels found in his blood from Monday's results and described the amount found in his system, as "therapeutic" and that this was still too high for him. I imagine she will likely take the last pill away sometime next week. 

Todd's chimerism results showed up on his MYCHART app today: 57% of the cells being from Todd's original bone marrow and only 43% of his brother's donated cells.  This was likely what she saw when she called on Wednesday.  Chimerism results from this week may not be in until Saturday or Monday since much of the staff was off for the Thanksgiving Holiday on Thursday.

Despite this discouraging news, we were so Thankful for Life, Love, Friends, and Family this Thanksgiving Holiday.  We spent Tuesday afternoon with our dear friends Chris and Lynda, with my family on Thursday, and we are planning a dinner tomorrow with Todd's mother.

We are still praying that the removal of the immunosuppressant will be effective.  We go back on Monday, December 3, 2014 for: blood work, an appointment with the bone marrow transplant doctor, and a physical therapy appointment for his frozen shoulder late in the afternoon. 

Day +66: New Bone Marrow Not Engrafting; risk of Transplant failure

Todd's treatment appointment today, Friday, November 21, 2014 started out a bit disappointing. His blood counts have not been going up like they should. As a matter of fact, they have dropped. His whites went down to 3,080; his hemoglobin to 10.6, and platelets down to 37,000 (a few weeks ago they were up to 58,000).

Then the doctor called us about 5:00 p.m., while we were driving home from Cleveland with the results of Todd's latest chimerism numbers from the blood tests they drew on Monday.  More bad news. Instead of his original bone marrow going down to the 0-5% they need to be, they went up!  To refresh every one's memory: The day he left the hospital (October 8) his original bone marrow was at 49% and his newly donated bone marrow was at 51%. The next set of results at Day+49: Todd's original marrow had dropped to 28% and his new marrow increased to 72%.  These results were slow, but good. At least they were headed in the right direction. This week's results:  Todd's original marrow went up to 50% and his new marrow decreased to 50%.  This is not what the doctor had expected.  This is a serious indicator that his newly donated bone marrow is not engrafting. Instead, his original marrow is growing back and taking over.  This may lead to a bone marrow transplant failure.  In this words of his doctor, this is not a rare occurrence, but it is not the common result, which should be full engraftment (New marrow at 95-100%). 

So, what does this mean?  That's what we are unsure of.  Unless they can get his original bone marrow to go back down and his newly donated marrow from his brother to engraft, Todd will likely relapse and have to have further treatment. 

While this development can be fatal if it happens earlier after transplant, this isn't the case at this point.  In that situation the body thinks the new marrow is a foreign invader and tries to kill it not knowing that the chemotherapy would have likely wiped-out all the original marrow, leaving the patient with no marrow and therefore no way to make blood cells.

What's likely happening now in Todd's case is that for some reason Todd's body may have developed some kind of anti-bodies or resistance against the new marrow and is attacking it and taking over (or many other possible reasons that are too technical to understand and explain here).   At least Todd's original marrow is producing some blood cells and the new marrow is producing the other half the blood cells.  The whole purpose of the intensive chemotherapy was to kill Todd's marrow which is not healthy, cancerous, and can't produce enough mature healthy cells.  The purpose of the transplant was to replace the bone marrow that would produce new healthy blood cells with normal blood counts.  If this doesn't occur it is considered a Bone Marrow Transplant failure and can result in a relapse of his disease: MDS.

There are several things that can be done for Todd, but at this juncture, the doctor is opting for the simplest solution: to ween him off  the rest of his immunosuppressant medication (Tacrolimus).  Last week his doctor changed his medication from 4 capsules per day to 3, because his numbers had dipped some.  Tonight, she told him to cut it down from 3 capsules per day to just 2 per day.  She will likely drop them down again next week when we go back.  She said there is still hope that this will allow Todd's body to develop some Graft versus Host Disease to suppress the existing original bone marrow and allow the new to engraft. (See posts on Graft versus Cancer/Leukemia Effect).  So far, Todd has been doing great, maybe too great.  He has had little side effects, little to no symptoms of Graft versus Host Disease, no rashes, no digestion issues, no severe eye dryness, no infections, etc.  He needs some for the Graft versus Cancer Leukemia Effect to work.

This is where God comes in and how you can help!  We desperately need your prayers, that this simple reduction in medication will be the answer to this problem.  This is a critical time.  This needs to work in the next few weeks or it may be back to the drawing board for other, more difficult solutions. 

To gauge how the re-development of the former marrow is effecting his counts, his doctor has also suggested moving up the post-transplant bone marrow biopsy from the +100 check-up point to about Day +80.  She wants to see if the re-growth of his original bone marrow has developed any cancerous blast cells.

To think about the possibility of further re-treatments after everything he has been through is just too much for us to wrap our heads around.  The possibilities could include: another transplant of his brother's stem cells with another new 100 day period of watching and treatments; a new round of different chemotherapy and another transplant from his brother's cells; or another round of chemo and/or transplant with an unrelated donor's cells with the same 100 day follow-up.  I'm trying not to worry about these possibilities and neither is his doctor. 

While it has only been +66  days since the initial transplant, we were in Cleveland for 8 days before that.  Todd spent 31 days in the hospital, endured intense chemotherapy, isolation, nausea, diarrhea, fatigue, lack of appetite, and lack of friends of family.  I have spent around 68 days living in an hotel room/suite, driving to the hospital for 12-14 hour visits or some days overnight visits, away from our home, our three daughters, friends, family, and yes my dog!  Our children have had to be away from their parents and worry about their dad, my poor mother had to be away from her home and my dad while trying to fill my shoes all that time (a job well done, but not for the faint of heart).  Todd and I have had no ability to work or earn an income but instead have had multiple households and expenses to pay for. The thought of doing this again would be too difficult to put into words here.

I guess we will learn more on Monday when we go back to see the doctor.  They will draw blood for another chimerism study in addition to checking his regular CBC counts.  We are blessed that the dropping counts have not yet resulted in the need for any transfusions. 

In the meantime, will you pray?  This journey has been full of ups and downs and twists and turns.  I feel like God is asking us to let go of everything else and trust him completely.  I have been applying for jobs, with no response. The one job interview I had scheduled (for seasonal work) was canceled tonight because they had just finished filling all their openings.   I want to cry out to God: "Why we can't we catch a break!  Why are you allowing things to go wrong? Why are we suffering such financial losses and the loss of things that make us feel secure?"  I want to tell God that "No, I really can't handle anything else!"  But, I know he is trying to teach us through these trials to solely rely on him.

Next week is Thanksgiving.  I want to give Thanks for the lives of those I love and the good health that he has blessed us with.  I understand that every good gift surely does come from above.  Thank you Lord. 

Day +55: Half way through and a Weekend trip home.

At Todd's Day +55 treatment and doctor's appointment, on Monday, November 11, 2014, everything was on schedule and there were no problems.  His counts overall were good and on the rise, but there was a slight drop in his Platelets.  Two out of four of his CBC counts are now in the normal range.  Here are the results:

White Counts:     4.43 or 4,430. Normal range is 3.70-11.0
Hemoglobin:       11.5                 Normal range is 13.0-17.0
Platelets:              47,000             Normal range is 150,000-400,000
Absolute Neut (ANCs) 3.44 or 3,440  Normal range is 1.45-7.50

We were a little concerned in the drop in his Platelets (went from 58,000 to 47,000), but after talking with his BMT nurse coordinator, she said that they typically see a slight drop in the Platelets from day 50-60 (Not sure why). 

That day, we ran into another former patient that Todd was in the hospital with.  He said he experienced the same drop in his numbers and even had to have a transfusion of blood due to lower hemoglobin at the 50-60 day point.  When asking him about his chimerism or percentage of donor vs. self bone marrow left, he said he had gradual drops in his own bone marrow and that he was now at 100% of his donor's bone marrow cells and 0% of his own.  He had his transplant about a week before Todd.

We also had breakfast with another former patient and friend we meet in the hospital.  She was at a similar chimerism as Todd, but her CBC counts were a bit stronger.  They started reducing her other immunosupporessant, Tacrolimus, just that week.

When Todd saw his BMT doctor later that morning, she said that they would probably begin reducing his Tacrolimus next week.  They also drew blood work for another chimerism report, but it will likely take 1-2 weeks to get the results as usual. 

The best news has been that Todd has not seen an obvious signs of Graft v. Host Disease since he was taken off his first immonosuppressant, Cellcept, last week.  Todd's magnesium results were also steady after reducing his magnesium supplements from 6 to 4 tablets per day. 

I still take his vitals twice per day, and there has been no sign of fever or high/low blood pressure.  Todd is doing so well!  We have no complaints!  Well...except to go home.

Speaking of home, we had the doctor's permission to go home for a weekend visit the first time in two months!  We arrived in Cleveland on Sunday, September 7 and got to go home for our first visit on November 7, 2014!  It was so wonderful.  I was able to cook using my gas range and oven!  We were able to stretch out in our king size bed and sleep with our favorite pillows.  The greatest thing was getting to see our daughters and parents.  And of course, my dog!  I'm sorry to say I didn't take one photo the whole weekend!  We were living in the moment, every moment of everyday!  We didn't get to go to church, because that is frowned on by the doctor (too many people, shaking hands, hugging, etc.), but we hope to go soon. 

55 days down, 45 more to go!