We received a call back from Todd's BMT Doctor this afternoon, Wednesday, January 7, 2015. She is assigned to doing rounds on the BMT floor at the Cleveland Clinic.
I asked her to help clarify Todd's latest chimerism study results. The results indicated that cells captured in the peripheral blood showed 50% of cells from Todd's original bone marrow. When isolating just the T-cells, which are his fighter cells, from the blood, they found 24% were from his original bone marrow. I was confused which number indicated the overall percentage of Todd's cells, knowing the remainder would be the donor cells. Was it 50% Todd's original marrow and 50% Tom's donated marrow? Or, was it 24% Todd's marrow and 76% Tom's? Apparently, it isn't so cut and dry. Todd's overall chimerism is at 50/50 and the T-cells are 24/76. Either way, these results are better than what they were prior to his first round of post-transplant Vidaza treatment, which was 60% Todd and 40% Tom's cells.
When I asked if the chimerism could be totally reversed to 100% donor cells at this point with just Vidaza treatments, she agreed with his local oncologist that it would be highly unlikely. While the Vidaza may continue to reduce or kill Todd's original marrow cells, it would never be able to be fully reversed if cancer cells are still present, which includes any amount of those fighter original T-cells (the second count) from Todd's diseased marrow. The Vidaza is helping with the chimerism, but it is mainly limited to killing the blast cells and attempting to reverse the 5q chromosomal deletion he currently has.
I also asked her to distinguish between a Donor Lymphocyte Infusion (DLI) and a second stem cell transplant and which she was planning to do after the treatment rounds of Vidaza. She said she wasn't sure just yet; everything depends on his chimerism and whether his MDS can get put back into remission. She said she is anticipating doing the second stem cell transplant with some type of chemotherapy to suppress his bone marrow and cells. She doesn't think the DLI would be successful or effective if any of his own marrow still exists, because the diseased marrow/MDS is still too strong and would likely kill off the DLI cells.
She was pleased to hear that he didn't need any
transfusions this week and that better arrangements had been made to get his transfusions done sooner while we are in Dayton.
All of these detailed, technical medical terms and procedures are enough to make your head spin! Todd's local oncologist asked me if I had now become a nurse since I've learned so much throughout his care and treatment! I wish! If I was about 20 years younger, I would love to study medical research. There is so much going on in the medical field now, especially in the field of genomics, isolating causes and finding new drugs or treatments. There has been some great success with some types of leukemia with medication like Gleevic and programing T-cell fighters. There isn't much to offer MDS patients at this point, except the great success they have had with the medication, Revlimid for patients with the 5q deletion. Since I don't want to start medical school (ha ha!), the least I want to do is to help raise money for the MDS International Foundation and/or the Leukemia and Lymphoma Society. These organizations help to fund and organize clinical trials and medical research for new treatments and medications. I will, someday. When the time is right.
Todd is still suffering from his frozen shoulder. Not much seems to help. He looks so helpless unable to use his arm! He's feeling a bit run down, so I plan on tying him down and keeping him in the house resting all day tomorrow. Its going to be so cold here, that even a healthy person shouldn't be out unless they need to. The girls are off school because of the dangerous temperatures, and Abby hasn't returned to Cincinnati to resume her college classes yet. So, the plan is to hunker down! Stay warm! God bless you! We appreciate your prayers and support.
Showing posts with label Chimerism. Show all posts
Showing posts with label Chimerism. Show all posts
Wednesday, January 7, 2015
Monday, December 22, 2014
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!
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!
Thursday, December 18, 2014
Day +91: Update from the Doctor.
Todd sent a message to his doctor about his appointment for next week and asked what about the plan after She is going to be out on vacation next week, so his appointment is with another transplant doctor on staff at the Cleveland Clinic. She wants him to come in for treatment and to see this doctor even though she won't be there.
She wants to run tests to see if he needs any transfusions, check his chimerism again, and check for any Graft versus Host Disease or Leukemia Effect. So this tells me that there may still be hope that Todd can see a reverse in his chimerism and/or that he can still develop some Graft versus Host to help battle his original bone marrow.
She also needs these test results to help her determine the next step in treatment. She is still leaning towards doing a second bone marrow transplant using Todd's brother"s stem cells or just his T- cells.
Overall, Todd has been feeling pretty well. He has been tired, resuming naps and has suffering some nausea even with the Aloxi they gave him the first day before chemo. He remains in good spirits despite the relapse, additional treatments, and our dwindling finances. We continue to trust God to supply all of our needs and he has been blessing us through friends and family and other charitable programs.
We recently received an anonymous Christmas card with a $100 gas card and a $100 Meijer gift card from a good friend which will go towards groceries. My parents came over and made us dinner. They have been offering to help us in any way possible on a daily basis. Todd's mom also had our family over for dinner too! Todd's brother and his wife sent us restaurant gift cards which makes it nice to go out to eat! We were also treated to lunch and good company by long-time friends who were happy to pay for lunch, recalling the time we had treated them to dinner after he had just lost his job! We had forgotten all about it!
The Cleveland Clinic has been good to us helping with COBRA premiums and providing us with a resourceful social worker. We learned that we are eligible for parking assistance with outpatient care. We are expecting assistance from the Leukemia & Lymphoma Society with medication co-pay reimbursements. Our social worker has also suggested a few other programs we may be eligible for since Todd is disabled.
Please continue to pray for us. First that Todd will be healed. Pray for the doctors as they make critical decisions in how to continue treating Todd. Please pray that I can eventually go back to work or find a job when Todd's condition has stabilized. We are trying to sell what we can and cutting monthly expenses where possible. I'm also trying to decide whether to continue graduate school, which would help me get a better paying job, but at a great cost. I only qualify for an unsubsidized loan at this point. I only have five classes left, with one being a practicum.
We are taking life one day at a time. It's really hard to plan much further than a week in advance. But God is with us and we are still positive expecting the best!
Friday, December 5, 2014
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
Friday, November 21, 2014
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.
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.
Thursday, November 13, 2014
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!
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!
Thursday, November 6, 2014
Day +49: Doctor stops Cellcept immunosuppressant
Todd got a call the next day after his appointment, Tuesday, November4,2014, from his bone marrow transplant doctor with the results from his chimerism study. The cells from Todd's own bone marrow is at 28% which is down from the 58% result from October 8, 2014 but still not to the 0-4% they need to be.
So, to help the new bone marrow from Todd's brother to engraft better, the doctor instructed Todd to stop his immunosuppressant Cellcept that day. She hopes this will help by allowing a little Graft versus leukemia effect to happen. Unless Todd's old marrow dies out there will be a risk of relapse in Todd's MDS.
That same day I received a phone call from another BMT patient we got to know while Todd was in the hospital. She had a related-perfect-match donor
I'm transplant a few days after Todd's. She too received a call from the doctor (we use the same one) to discontinue her Cellcept too. Her original bone marrow cells were at 30% which isn't too different from Todd's.
Although the doctor is pleased with both recoveries, she is concerned about that percentage being a bit higher than she would like to see. Both Todd and this other patient/friend were part of the clinical trial where they received the reduced amount/experimental regime of pre-transplant chemotherapy. This is a little concerning. We hope that the trial regimen was strong enough to kill off the patients own bone marrow to allow full engraftment of the donor's marrow.
At this point, there is no reason for alarm. We still have to be on the lookout for any signs of severe Graft versus Host disease and hope that the Graft versus Leukemia Effect will take care of wiping out Todd's original bone marrow which still has MDS.
I'm sure the chimerism test will be repeated in a few weeks
Monday, November 3, 2014
Day +48: Numbers Increase and Medication decreases
At today's doctor's appointment, Monday, November 3, 2014, Todd's doctor did not have his latest chimerism study results back yet. It could be as late as Friday before they come back. So, we won't know the results until next's week's Monday appointment.
The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday. Under normal conditions, this medication is stopped between days +50 and +60. So, this Friday, will be Day +52. The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface. A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow. However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.
We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
Hemoglobin White ANC Platelets
October 27 10.9 3,110 2,190 50,000
October 31 11.3 3,840 2,740 57,000
November 3 11.6 4,610 u/k 58,000
His potassium and magnesium results have also been high enough not to need infusions. As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.
While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon. I'm ready!
I'm getting so tired of hotel living. The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am! Not to mention that I am terribly missing my family and my dog Charlie! I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier! My poor mom is ready for some relief too! (God, please help her to hang in there!).
We praise God for Todd's good health. We ask that you remember us in your prayers. This week specifically: That Todd's body will respond positively to the withdrawal of the medication. That God will give us all patience and forbearance to endure our living situations a few more weeks. That God will give us direction in our finances, job opportunities, and affordable health care in the months to come. Thanks.
The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday. Under normal conditions, this medication is stopped between days +50 and +60. So, this Friday, will be Day +52. The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface. A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow. However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.
We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
Hemoglobin White ANC Platelets
October 27 10.9 3,110 2,190 50,000
October 31 11.3 3,840 2,740 57,000
November 3 11.6 4,610 u/k 58,000
His potassium and magnesium results have also been high enough not to need infusions. As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.
While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon. I'm ready!
I'm getting so tired of hotel living. The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am! Not to mention that I am terribly missing my family and my dog Charlie! I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier! My poor mom is ready for some relief too! (God, please help her to hang in there!).
We praise God for Todd's good health. We ask that you remember us in your prayers. This week specifically: That Todd's body will respond positively to the withdrawal of the medication. That God will give us all patience and forbearance to endure our living situations a few more weeks. That God will give us direction in our finances, job opportunities, and affordable health care in the months to come. Thanks.
Monday, October 20, 2014
Chimerism study: first set of results
At today's treatment appointment, all of his blood counts levels and magnesium and potassium levels were good enough that no transfusions or infusions were needed. His counts continue to climb which is a good sign that Todd's new bone marrow from his brother (the donor) is engrafting and producing healthy cells.
Two issues at the doctor's appointment were discussed today. First, Todd's blood work from a chimerism study and the rash on Todd's face.
First, the chimerism study. It is a study of the DNA and HLA typed blood cells in Todd that determines how many cells are present from his own bone marrow versus his newly donated bone marrow. These results "lag behind" according to the doctor, so they may not be reflective of the present (they may be older than what is currently happening). This initial report showed that 49% of the cells were from Todd's original bone marrow. (This makes his chimerism mixed.) That means that 51% of his cells are from his newly donated bone marrow from the transplant. The doctor is thinking about repeating this test on Friday to check for more current results. We would all hope to see Todd's cell numbers from his old bone marrow to greatly decrease and the new cells from his newly donated bone marrow would greatly increase. The best result would be that there would be little to none left of Todd's old bone marrow cells.
What is the implication of these results? The chemotherapy that Todd underwent prior to transplant was to kill his own bone marrow since it was not producing healthy cells. There is a possibility that a relapse of Todd's MDS could occur if left unmonitored. The goal of the transplantation process is that the donor's bone marrow will engraft and take over healthy blood cell production. A mixed chimerism of both cells could prevent this from happening. This is where the Graft versus Cancer/Leukemia/tumor (GvL) effect comes in.
This is why monitoring is so important post-transplant. The doctor can manipulate the GvL by altering the amount and type of medications Todd is on now. The doctor is talking about removing Cellcept from Todd's cocktail of medications. The Cellcept is a type of immunosuppressant that keeps the body from developing Graft versus Host disease. The idea here: to allow a little Graft versus Host in the form of Graft versus Cancer/leukemia effect to kill out Todd's old bone marrow to allow more engrafting of his new donated marrow.
I will post updates on this issue as it develops.
Second issue:
The rash that started on Todd's face and neck has spread a bit to his chest and abdomen. It has not changed in intensity at all, so the doctor is still just keeping an eye on it. He will continue to use hydrocortisone on it for now.
Post Script: Date of Chimerism study: Day of release from hospital: October 8, 2014.
More information on chimerism studies:
http://omicsonline.org/2155-9864/2155-9864-S1-006.php?aid=4311
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