The year ends with Transfusions.

We had to get up at 5:00 this morning to be at the Cleveland Clinic by 9:15 am. As we got closer to Cleveland we see what looks like mountains in the distance. Of course there are no mountains...it's a huge cloud bank covering Cleveland. How typical!

We arrive and they quickly get to the blood work, including a new chimerism study and type and screen anticipating the need for transfusions. Todd was feeling pretty fatigued the past few days and we knew his hemoglobin was down last Friday. The results came in that he needed platelets. His was 9 and the threshold is 10. He also needed two units of blood since his hemoglobin was at 7.6. and the threshold is between 8 and 8.5. His white counts were up to almost normal at 3.47 or 3,470 which is likely the result of the Vidaza chemotherapy giving him a bounce. 

Todd teased that he knows how a vampire feels when he hasn't had any blood!

Our social worker stopped by to give Todd the standard 100 day post-transplant survey. She has been such a great help!  

Todd's regular BMT doctor was back from vacation and we had a good long visit. She took him off all of his maintenance medications except for one, his Acyclovir. This made Todd happy!   After discussing today's counts she talked a little bit more about where Todd is and a likely game plan for the next few steps. 

First, he will have his next round of chemotherapy in Dayton starting January 12, 2015. She said she only wanted to do 5 days of the chemo Vidaza instead of the standard 7-day treatment regimen he had over the summer, because his bone marrow is still very sensitive to any changes and they are exposing both his diseased marrow and his brothers donated healthy marrow to the toxicity of the chemo. While they hope to kill off his original diseased marrow they don't want to damage or lose any of his new marrow. 

She would actually like to do at least two more rounds (Jan and Feb)of Vidaza chemotherapy to get Todd back into remission enough to proceed with a second stem cell transplant. But this will have to be evaluated week by week and month by month. Many of these decisions will have to be made based on how his chimerism stays. If his brother's donated marrow can hang in there, they can proceed with additional rounds; but, if there would be a drastic change where his original marrow would increase to the point of wiping out his new marrow, then they would likely have to stop the Vidaza and start some type of stronger chemotherapy, like what he had to wipe out the marrow before his transplant. 

Right now, his chimerism consists of: His own original marrow 60% and his brother's donated marrow at 40%.  There is still a hope that the Vidaza can target the diseased original marrow, causing it to decrease, and allowing Tom's donated marrow to flourish.   She said the likelihood of Todd developing any Graft versus Host Disease at this point is minimal and not likely.  So, he won't be able to utilize the Graft versus Leukemia Effect to wipe out his old marrow, which is what has made the first transplant unsuccessful.  

We talked about the possibility of using a different donor this time instead of his brother Tom again.  I asked if there was a possibility that their HLA Match was "too good," not allowing any Graft versus Host, but she said it is complicated to bring in another bone marrow from a third person when he already has two different marrows.  She explained that Todd's marrow is not only sensitive because of all the chemotherapy and the transplant but because they are co-existing. To add a third person's marrow may create a range of other issues including exposures the new donor would bring in.  So, that option is not ideal right now.  

She is still waiting to see what would work best when harvesting Tom's peripheral blood stem cells.  There are two main options.  The first would be to give him Neupogen injections prior to harvesting, which would produce a larger number of cells, but they would be newer, immature cells that may not be as effective depending on the situation.  Or, the second, to harvest the stem cells without Neupogen, because then they would be able to obtain more mature cells.  Either way, it looks like we are at the mercy of Todd's brother Tom to donate blood stem cells.  This is much less invasive than donating bone marrow.  He would only need to do a pre-blood screening prior to donating and it only takes several hours to sit and filter his blood for the cells.  

As to whether the second stem cell transplant can be done outpatient or inpatient is yet to be determined.  Too many factors to consider now.  This is another decision that needs to be made closer to the transplant.  

As for going back to the Cleveland Clinic for treatment appointments and transfusions, we no longer need to do that.  Todd is going to start going to his local oncologist here in Dayton to have blood work drawn every Monday.  If he needs transfusions, it will be arranged here in Dayton at Miami Valley Hospital again.  So, this is good news for us.  We will only need to go back every few weeks to have blood work drawn for special studies and to meet with his doctor.  

So, the next appointment in Cleveland, will be on Wednesday, January 21, 2015.  Hopefully, he will have his next appointment here at the local oncologist on Monday, January 5, 2015. (It's been hard to get things scheduled with the holidays and reduced staff).  Then he will start his out-patient chemo here the following week, Monday, January 12.

I feel pretty good about this game plan.  I did ask about any clinical trials that he would be ideal for, instead of doing the second stem cell transplant, just to make sure we were looking at every option.  She said she could look at that route, or the option that Todd could just stay on the Vidaza month-to-month until he stopped responding to it.  Then, they would have to try another medication, like Revlimid, which has showed some success with patients who have just a 5q chromosomal abnormality, but this wouldn't be guaranteed to work, since Revlimid works better on patients who have only had this deletion in the past and not the complex multiple deletions Todd has had in the past.  She said we would lean towards these options if Todd was older and in poorer overall health, but, since he is young and in good health right now, she feels the more aggressive treatment of the second stem cell transplant is a better course of treatment for him.  Todd does face the risk of getting a bad case of Graft versus Host Disease, which she said he doesn't want, so it will take some serious finessing to get the chemotherapy and immunosuppressant use, both prior and post-stem cell transplant as fine tuned for him as possible. 

In addition, she reassured us that she alone would  not be making all the treatment decisions, but that she would be relying on her colleagues in their weekly meetings to give her their perspective and experiences in planning a course of action.  It is nice to see that she doesn't have a "God complex" and that she is humble enough to listen to the opinions of her colleagues.  

I still might look at other options or see what clinical trials are available on my own.  However, I can't help get past the stigma in my own mind that clinical trials are for lost causes.  

Looking back, I wish we had made the decision to have the transplant prior to him developing the complex chromosomal abnormalities.  This was a hard decision to make then without having the hindsight we have now.  His blast counts were staying under 10%, no where near the Acute Myeloid Leukemia level (20%) and he went from two years of having no abnormal cytogenetics to having multiple complex chromosomal abnormalities 3 months later.  I think the "wait-and-see approach" was alright for awhile, but once his numbers starting climbing, we shouldn't have risked the chance of him developing chromosomal abnormalities.  It was this development that convinced me to push him for the transplant, knowing that it can alter a patient's prognosis.  I personally believe that these abnormalities are complicating treatment now and have contributed to the unsuccessful bone marrow transplant.  But, this is just my "hunch" and I don't have empirical, definite evidence to prove that.

Looking back, however, while it might help or influence someone else's future treatment decision (that is the only reason I include my opinion here), doesn't help us at all.  We must look forward, remain positive, and trust God with the future.  I'm learning from the book that I am reading, that the only thing that separates a Christian from a non-Christian in situations like this, is in how we respond.  Christians have no extra protection from cancer from non-Christians.  If it is God's will to allow cancer, then he must have a purpose in the process and/or outcome.  Maintaining our joy and trust in his divine purpose through this crisis can bring us comfort and provide hope to others. 

In closing, I read something recently that said when a loved one has cancer and is going through treatment, it is important to view your current state of uncertainty as the new normal.  This is going to be my outlook in the new year. God Bless!

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! 

Bone Marrow Biopsy Results returned prior to transplant.

Todd's bone marrow transplant doctor sent him a message yesterday, August 22, with his cytogenic results from the bone marrow biopsy he had on August 7, 2014, as part of his staging leading up to the transplant. 

We were shocked to learn that with four rounds of Vidaza, all four of the chromosomal abnormalities/deletions he had been diagnosed with biopsy earlier this year, had been reversed, and that NO deletions were detected on this biopsy.  While we knew this was possible, we were surprised to learn he had responded so well to the chemo.  According to the transplant doctor, this is great news to receive prior to having the bone marrow transplant. 

Not only did the Vidaza help with the deletions, but his blast counts were still down to about 1%.  These results will give Todd ideal conditions going into the transplant.  We are thrilled, but couldn't help to question, "Why should we still do the transplant then?" 

So, I began trying to pull up research on the reversal of chromosomal abnormalities after receiving Azacytidine or Vidaza.  After reviewing some research, I learned that these results are short lived and are dependent upon repetitive use of the drug.  It seems like with those who did achieve some kind of remission, it was only for four to fifteen months before relapse.  Some also suffered from neutropenia, which is low blood counts that require treatment, and others had some long-term side effects from the toxicity of the drug. (Raj and Mufti, 2006: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936359/#!po=46.9780)    The actual dysplasia of the blood cells that is found with the initial MDS diagnosis are still present in all cases, meaning there is no change with cause of the disease. 

Once again, we feel reassured that Vidaza was a great short-term option for pre-loading before the transplant, but it is not a great long-term solution for Todd's case of MDS.  We still feel like the transplant with his perfect match donor is the best long-term solution for him at his age of 45 and with the progression of his MDS.

The Vidaza is Working!

Two positive results are giving us great feedback from Todd's first round of Vidaza. First, he had bloodwork done this  week, showing his platelets had bounced back from an all-time low of 16,000 the week after the chemo treatment to a record high of 79,000 three weeks after treatment. 

Second, we got the bone marrow biopsy results back today showing an unbelievable result of a 0% blast cell count!    Cytogenetic testing results were not back yet but it is obvious that these results are showing us that the Vidaza is working. 

While this is great news it doesn't mean he is cured or anything like that. It changes his risk assessment and treatment options. At this time, the

Bone marrow transplant is still the only "curative" treatment. However, the Vidaza is halting the progression of his MDS for now. 

So we do we go from here?  Well for starters we meet with the new local oncologist on Tuesday, June 10, 2014. Then he will begin a second round of Vidaza that next Monday, June 16, 2014. 

Why another round? Well usually 3-4 rounds are the "prescribed and preferred"  method of treatment with Vidaza. Todd is still making "bad" or ineffective blood cells, but the Vidaza targets them. So, we aren't sure what will happen once the Vidaza rounds of chemotherapy are completed. Some patients have been fortunate enough to go into a short-term remission, while others have experienced resumed progression. Vidaza is usually used in two main instances: first, for patients without a bone marrow match or who are too old or too unwell to undergo a transplant. For others, it is used pre-transplant to get patients into optimal health conditions, by reducing the blast counts, so they respond better to transplantation. 

So, will Todd still need a transplant? Most likely. I understand that there may be a chance he could go into a short or maybe even a long-term remission. However, chances are it will begin to progress again at some point. 

The advantages of putting off transplantation include a good quality of life if he is not too symptomatic. It also buys time for new cures to be researched and implemented. We were told from the start by several doctors that the research in this area is moving rapidly. Many hope for a safer alternative cure than bone marrow transplantation. 

The main disadvantages of putting off transplantation is the possibility that his MDS could progress quickly to Acute Myeloid Leukemia without any warning. This in itself holds many scary outcomes, including proliferation to other parts of the body. 

Another would be that there won't be a newer, safer cure by the time he needs it. Meanwhile, he is getting older and the MDS could progress making him symptomatic or if progression would go to AML, it would require additional chemotherapy to put it into remission before transplantation can be attempted. Even if his blast count went to say 15% which isn't technically AML yet, he would still have to lower his blast count to begin the transplant. 

So, for now we are cautiously optimistic that the multiple rounds of Vidaza will continue to affect his MDS positively.  Remission would be ideal! Todd is still young enough that we are wiling to wait for a newer, safer cure if we can. If it becomes absolutely necessary he will do the transplant, but as a last resort. 

This is all conditional upon the results of his most recent cytogenetic report which we should receive in about another week. 

We are taking things a day at a time trying not to get ahead of things. We are listening to his doctors and weighing their advice and treatments regimines. We are rejoicing and thanking God for this good news. 

Thanks again for your support!