First, the good news. I was able to work with someone at the local oncologist's office and Cancer Center to get Todd's weekly appointments and transfusions streamlined. I was so grateful to get in touch with the right person to figure out all these problems. For now on, Todd will have a set nurse's appointment every Monday morning at the Kettering Cancer Center to have his blood drawn properly through his Hickman Catheter. No more waiting for a nurse! He can get preliminary counts back there in about 10-15 minutes. If he needs any transfusions based on his results, they will make an appointment with Miami Valley Hospital's Main Campus to have the transfusion done there that day if the appointment is early enough. We learned that sending him in later in the afternoon for a transfusion would cause the hospital to keep him overnight for observation, so that is why they have been sending him the next mornings after the type and screen. So, there will be a wait time on the type and screen, but that is normal and unavoidable. At least everything will be done in one location after the initial blood work.
Todd went in for his nurse's appointment for blood work, yesterday, Monday, January 26, 2015. Preliminary results were discouraging. He was near transfusion thresholds once again: Hemoglobin at 8.0 with anything lower than that requiring transfusion; white counts .7 or 700; and platelets at 16,000 with platelet transfusion required below 10,000.Todd did NOT receive any transfusions that day, but may be required to return by the end of the week for a repeat CBC and prescription for any necessary transfusions if he starts exhibited symptoms of lower counts (dizziness, shortness of breath, confusion, headache, severe fatigue, etc.).
We were both a bit discouraged by the low counts so soon after his transfusion on Wednesday of last week at the Cleveland Clinic. He felt pretty good over the weekend and was able to go with the family on a college visit for Hannah, our second daughter, who graduates this year. Many may be negative about the expense and stress this may have put on Todd's health, but I can't tell you how important it is to him to try to live a normal life and to share these special experiences with our daughters when he is able to. He wants to make all those memories with them! We all want to live every day to the fullest don't we?
I follow and "Like" several MDS forums on Facebook to keep up with the latest news and research in the field. (https://www.facebook.com/aamds?ref=br_tf)Yesterday, I saw that the Aplastic Anemia and MDS International Foundation had posted a story on my news feed about a new clinical phase 1 trial being conducted with a new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center. http://www.mskcc.org/cancer-care/trial/13-154 After reading this, I decided to call his BMT doctor at the Cleveland Clinic to touch base with her about Todd's low numbers and see if he would be a good candidate for this trial.
We discussed his low counts first. She assured me that his low counts or cytopenias, are not uncommon with MDS patients who are receiving Vidaza. While he experienced some low counts and seemed to bounce back quickly the first rounds of Vidaza last year, she reminded me of his sensitive bone marrow post-transplant. She said that with the chemotherapy, unfortunately they are killing good cells along with the bad. Todd was just fortunate not to need transfusions prior to the transplant, unlike most MDS patients who have to. I asked her if she was concerned about doing the next round of Vidaza if his counts remained so low. She said she wasn't going to give me a definitive answer, because so many other variables need to be considered before then, but in general they will continue treatment as long as a patient's ANCs are over 500.
His BMT doctor and nurse had just received the backlogged stack of CBC results from the Kettering Center/local oncologist, so she had not had a chance to review them yet. Without seeing them, she said they typically like to push through the low numbers because the treatment is still working to kill the disease and this chemotherapy or hypometholating agent like Vidaza is much less toxic than any other alternative.
After I got off the phone I resumed watching videos via the Facebook link and found an interview video by Dr. Louis Silverman and Erin Demakos, RN, that confirmed everything that she was saying. Dr. Silverman asserted that according to studies, MDS patients need to push through the low numbers (known as cytopenia(s)) which are side effects of the Azacitidine (Vidaza) for the first few rounds, to be able to get the results that the 4-6 cycles can produce. Patients who stop after two or so cycles because of the cytopenias, are not getting the full benefits of the hypometholating agent, yet they suffered the majority of the side-effects with only the two cycles.
What's even more amazing (I had heard this, but had forgotten it), he said that studies show that the low counts in themselves do no real harm in producing subsequent infections. INSTEAD, it is the underlying disease that causes the health issues and infections. After subsequent treatments, patients start to see the positive "bounce" or "rebound" that, in the long run, helps them to get better. Here is the link to the short video: http://www.oncology.tv/OncologyTVNetwork/TabId/1455/VideoId/940/Erin-Demakos-RN-And-Dr-Louis-Silverman-Discuss-Incidence-And-Treatment-Of-Myelodysplastic-Syndrome-In-The-US.aspx
In closing, his BMT doctor said she would review the phase 1 trial being done by Dr. Stein. She stated that Cleveland may have been considering doing a similar trial with a similar drug (an IDH-1 Inhibitor) from the same company. She did say though that most of the patients in these phase 1 trials are patients with no other options, unlike Todd. And, that often patients who have already had a bone marrow transplant are often excluded.
If you are someone you know is suffering from MDS or another type of Anemia or Blood Cancer, they may want to check out this Oncology TV website that offers various interview videos reviewing current trials and study results. Dr. Gerds, who was the attending BMT doctor making rounds while Todd was in the hospital, also has a short clip on there about a study he did about patient/doctor communication.http://www.oncology.tv/Home.aspx Then, go to new videos from ASH 2014.
This has been a long, technical blog, so I will wrap it up for now! Sometimes all this information can make your brain hurt!
Other Organization's Facebook Pages to follow:
https://www.facebook.com/pages/MDS-Foundation-Inc/154245875037
(https://www.facebook.com/aamds?ref=br_tf)
Tuesday, January 27, 2015
Wednesday, January 21, 2015
Transfusion and 1-2 more Rounds of Vidaza ordered
Today's appointment, January 21, 2015, at the Cleveland Clinic was a long one! We had a snowy and slick drive up to begin with. Once we arrived, the routine blood work was drawn and we waited for the numbers to come back. Neither of us expected the need for a transfusion since his counts were still up on Monday and he had just had a transfusion last Thursday.
To our surprise his hemoglobin fell from over 9 to 7.9 in just three days. The type and screen took 2 hours and the first unit of blood didn't arrive until almost 2:00 pm. The rest of his counts were low: White counts at .79 or 790; ANCs at .55 which is still considered Neutropenic. His platelets were lower at 36,000 but at least no transfusion of platelets were needed. This is the first time he has had to have another transfusion within 1 week. Usually, he has been able to go about 2 weeks before needing one. The doctor was not too concerned about this. She explained that the low counts and need for transfusions can happen because the bone marrow is still sensitive to changes after a transplant.
We couldn't go upstairs for his doctor's appointment because he was getting his transfusion, so she came down to his treatment room along with our nurse coordinator.
First, we learned that she has NOT received ANY of the blood work results that has been drawn in Dayton. So, it was hard for her to evaluate how well his counts were rebounding a week or two after chemotherapy. (Ugh. Why does this surprise me!).
She could tell he has lost weight and showed some concern about his appetite as a result of feeling nauseated from the Vidaza. She recommended that he take a Zofran every morning before getting chemo.
She also prescribed Cipro (antibiotic) for him to take when he becomes neutropenic the first week after chemo.
All these preventative medications were discussed as she wants to do 1-2 more rounds of Vidaza. So he will be starting round 3 on February 9, 2015. Then, he will return to Cleveland two weeks after that for a follow up visit. If his counts are able to rebound well after 2 weeks, she will likely schedule a 4th round for March 2015. Then a bone marrow biopsy after that. She also said she might do the biopsy after the 3rd round in February just depending on his counts and his chimerism results drawn today.
Since he didn't get a breathing treatment of Pantamidine, which is an antibiotic treatment they have been using instead of Bactrum (which he has an allergy to), she has ordered a blood test to check his CD4 counts to judge how these helper white T-cells are doing. They can be suspecting to going down after chemo and they are needed to help fight off bacterial infections like pneumonia.
We didn't get home until about 9:30 pm. I'm sure I've made some errors in this blog because I'm so tired.
More to follow.
Monday, January 19, 2015
Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic
When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again. His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday. So, he needed a transfusion.
But the nurses and staff can't seem to get the ball rolling. First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn. Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port. The phlebotomists are not allowed to touch it. They can only draw from his arm. So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood. This has taken anywhere from 30 minutes to over an hour.
After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes. He was tired of waiting. So, they got the sample and told him it could take up to an hour to get the results. He was tired and so he told them just to arrange to have the transfusion done the next day. They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon.
He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems). So, he waits an hour for them to get the type and screen. Then they have to order the blood. It always takes about 1 1/2 hours per unit of blood and he always gets 2 units. So, needless to say it was a long day.
Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days. If he needs a transfusion, he can have it done there (supposedly). When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done! So, he has to wait til they call the doctor and get orders. Then, there is no nurse available to take blood from his Hickman again, so he waits. After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample. Then, they say it is going to take another hour to get the results and that is with it labeled "STAT." Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.
Hours later, they call. Instead of giving him his CBC results, they just said he whites were low at .7 and that's all. So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him. He has to leave a message for someone to call him back.
Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again! I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results. At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes. So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it. She said, "He has good veins, they can just stick him." And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck! It could cause him to bleed and bruise!" And she says, "Yes, I guess your right. I hadn't thought of that!" Ugh...
Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting. He doesn't have much energy or patience right now. Who would? No patient should have to go through this much confusion and waiting!
It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements. I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.
He finally got a call back from another nurse with the other results: His Hemoglobin is a 9.3, well above an 8; no transfusion needed. His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed. But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc. These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them. Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too.
It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so. That being said, its not good that they are this low. We all are going to have to be careful in the meantime.
I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics. We are not sure what this visit will entail except for the routine CBC and seeing the doctor. I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant. At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease. He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant.
I will post more after Wednesday. Thanks again for caring enough to read this blog and to pray for Todd.
But the nurses and staff can't seem to get the ball rolling. First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn. Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port. The phlebotomists are not allowed to touch it. They can only draw from his arm. So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood. This has taken anywhere from 30 minutes to over an hour.
After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes. He was tired of waiting. So, they got the sample and told him it could take up to an hour to get the results. He was tired and so he told them just to arrange to have the transfusion done the next day. They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon.
He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems). So, he waits an hour for them to get the type and screen. Then they have to order the blood. It always takes about 1 1/2 hours per unit of blood and he always gets 2 units. So, needless to say it was a long day.
Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days. If he needs a transfusion, he can have it done there (supposedly). When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done! So, he has to wait til they call the doctor and get orders. Then, there is no nurse available to take blood from his Hickman again, so he waits. After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample. Then, they say it is going to take another hour to get the results and that is with it labeled "STAT." Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.
Hours later, they call. Instead of giving him his CBC results, they just said he whites were low at .7 and that's all. So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him. He has to leave a message for someone to call him back.
Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again! I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results. At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes. So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it. She said, "He has good veins, they can just stick him." And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck! It could cause him to bleed and bruise!" And she says, "Yes, I guess your right. I hadn't thought of that!" Ugh...
Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting. He doesn't have much energy or patience right now. Who would? No patient should have to go through this much confusion and waiting!
It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements. I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.
He finally got a call back from another nurse with the other results: His Hemoglobin is a 9.3, well above an 8; no transfusion needed. His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed. But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc. These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them. Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too.
It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so. That being said, its not good that they are this low. We all are going to have to be careful in the meantime.
I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics. We are not sure what this visit will entail except for the routine CBC and seeing the doctor. I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant. At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease. He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant.
I will post more after Wednesday. Thanks again for caring enough to read this blog and to pray for Todd.
Tuesday, January 13, 2015
Second Round of Vidaza begins
On Monday, January 12, 2015, Todd started his second round of Vidaza chemotherapy post-transplant. His blood work results were mixed. His hemoglobin was at 8.0, right at his threshold for needing a blood transfusion. However, his platelets rocketed to 116,000! This is likely from the first round of Vidaza. I remembered that his platelets went up after his first or second round of Vidaza he had last year before the transplant. His white counts were still a bit low at 1.3. He decided not to get a blood transfusion that day because he still had some stamina. So, they are going to collect another CBC on Wednesday to see what his hemoglobin is then. It is likely he will need to get a transfusion then; he will get his chemotherapy and then head to the hospital if that's the case.
He announced today that he has lost another six pounds. He felt nauseous and had an upset stomach and bowels all weekend. He was concerned that he was trying to fight off a virus, but luckily there was no fever. He still takes his anti-viral medication twice a day. I've broken out a set of paper masks as the girls have been pretty congested lately. We don't want to take any chances.
Overall,things are going well and we are encouraged. We received a call from the local incologost's office, informing us that we may be eligible for assistance in paying for his Vidaza. It's a new calendar year, therefore we have to start over to meet our deductible. We sent them the required paperwork and received word that he qualified. We don't have to go through paying first and submitting claims; their office handles everything! Praise God.
Meanwhile, I have returned to substitute teaching a few days. I also started my graduate online classes through Kent State on Sunday night and I think they are going to be manegable. I've received one "sorry you didn't get the job" letter from the University of Dayton for a part-time library research job I applied for some time back. Nothing makes you feel so miserable than receiving one of those! I'm trying to remind myself that it just wasn't God's will for me to work there and he closed that door.
On a more positive note, I did get a call back from Fuyao and the Ohio Means Job Center to take a skills/basic academic test last Saturday morning. I think I did well, but there are hundreds of people applying. It is a far cry from an academic or library job, since the opening is in Production/Factory work, but I'm open to anything right now.
In the meantime, I've got plenty to handle for now. Please continue to pray for God's will in all of this:
Todd for healing and successful treatments. For the doctors making treatment decisions.
For me: to get through my classes,to balance work/school/home. For a job to open when the timing is right.
For Abby, who went back to classes at The University of Cincinnati this week. She's trying to balance schoolwork and volunteering to fulfill the requirements of her scholarship. She is also bouncing between life there and what's going on here at home.
Hannah has been trying to complete her college applications which have been quite involved since she has to upload her portfolio of artwork for each one. She has exams this week and hasn't felt well. She begins taking art lessons in February at the Dayton Art Institute through a scholarship she was awarded. Applying for colleges in time to be considered for merit scholarships has been taxing. Pray she can get them done soon and still balance school.
Ellie has exams this week too. Her club volleyball season begins this Saturday with a long all day set of scrimmages. The season is full of Saturday all-day tournaments. I have been out trying to find businesses to sponsor advertising for the club volleyball yearbook, so we can reduce our costs, but so far I've haven't got anything definite.
As you can see we all have a lot going on and the added energy needed to fight this Cancer and financial hardship has been more than challenging. We need your prayers. Thanks for your support.
My inspiration this week: Song by Jeremy Camp, "He Knows." Check it out on YouTube.
Wednesday, January 7, 2015
A Chat with the BMT Doctor clarifies Results and Treatment
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.
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.
Tuesday, January 6, 2015
Day 112: Local Oncologist; No transfusions needed
Tuesday, January 6, 2015 found us at the local cancer center in Dayton to have Todd's CBC drawn to see if he needed any transfusions and to connect back with his local oncologist.
Praise God, no transfusions were needed. As a matter of fact, his counts were good! His hemoglobin was stable at 8.9; platelets at 16,000, and his whites were high (for Todd) at 3.5 or 3,500!!! (Normal range on the low end is 3.8). His ANCs were normal at 2.6. The whites and the ANCs help Todd fight infection, which is so important right now with so many viruses and the flu going around.
Todd complained to the doctor about his last CBC and the long wait (5 hours)i in getting an order and setting up his platelet transfusion, which had to be done the next day at 7 am. The doctor said that should have never happened and suggested that we go to the other location at the Cancer Center at Miami Valley South Hospital. That way he can have his blood drawn along with a type and screen and if needsa transfusion,it can be done right there at the hospirL. So, every Monday that he doesn't have chemotherapy, he will go to the Miami Valley South Hospital Cancer Center for blood work. The chemotherapy though at least for next week will be done at the same location.
The doctor asked what options for treatment his BMT doctor in Cleveland was considering. We talked about the possible use of Revlimid medication that is used successfully in 5q deletions alone. We talked about using an unrelated donor instead of his brother for the second transplant and/or donor lymphocyte infusion (DLI). He is always very respectful of Todd's BMT doctor,but still engaged us in discussion about it.
Earlier in the morning, Todd got his last Chimerism results posted to his "My Chart". It showed that Todd's original cells in his peripheral blood was at 50% and the amount found in the T cells was 24%! This is a huge reduction from the last results that had him at 60% and his brother's donated cells at 40%. I have requested that his BMT doctor in Cleveland call us to explain these results. We briefly discussed them at his appointment today and asked if this change could be attributed to the Vidaza working and if it could result in giving Todd the full donor cell chimerism he needed to bring his donor cells to 95-100% and Todd's 0-5%. His opinion was that Vidaza can only attack the immature cells once they are produced, but it cannot target the mother cells that keep producing the bad cells. Only new transplanted bone marrow could do this. But, he agreed that an additional DLI of his brother's stem cells could allow his brother's marrow to get the upper hand and it could help to produce some Graft versus Host Disease needed to wipe out the remaining original marrow.
He didn't act surprised that Todd didn't develop any Graft versus Host Disease with using his brother's perfect matched bone marrow. That's why he raised the question of his BMT doctor using an unrelated donor next time. I told him I had asked her the same question: Was Tom's marrow too much of a perfect match, that Todd's body did not offer any resistance to it, especially with the immunosuppression therapy that was applied? I gave him her explaination about having three marrows might not be the best choice right now. We also explained that she is taking everything slow and carefully weighing each treatment decision according to Todd's changing condition week by week.
We go back to see him in a month. Meanwhile, the second round of post-transplant Vidaza chemotherapy starts next Monday, January 12, 2015.
I'll come back and edit this post or write an update once I get some clarification from his BMT doctor when she calls us back.
One note: the oncologist today had my back and got onto Todd about doing any manual labor or activity. Even though he may have good days when he feels like doing chores around the house or yard, he still needs to be cautious. Any fall, bump, or injury could cause internal bleeding with such low platelet counts.
We also discussed his frozen shoulder pain and told him he could take some Tylenol and/or the oxycodone (that doesn't work for Todd) but absolutely NO ibuprofen. He was also willing to send Todd to get physical therapy if it was no better. He didn't think or know of any relation with the flare up and low platelets.
Monday, January 5, 2015
Dayton Doctor appointment scheduled
Todd didn't go into have his CBC blood work done today. His local oncologist wants to see him, so he is going to do both tomorrow, Tuesday, January 6, 2015. We are supposed to get a fair amount of snow tomorrow, so I'm hoping it won't hinder us getting to the appointments. We aren't sure if he is needing transfusions or not.
His frozen shoulder has been given him a lot of pain the last few days. He has very limited mobility with it, making it hard to dress, drive, or even open a car door. He's tried heat and a little message, but we have to be careful because his platelets are so low (bruising or bleeding concerns). He is trying to do some of the exercises he learned from the physical therapist when this first happened. We were thinking back to when this first occurred and it was at a time when he was getting platelet and blood transfusions. So, we aren't sure if there is a connection between the frozen shoulder flare-up and the transfusions or maybe even the very low blood counts.
I will have another update after we meet with the appointments tomorrow.
His frozen shoulder has been given him a lot of pain the last few days. He has very limited mobility with it, making it hard to dress, drive, or even open a car door. He's tried heat and a little message, but we have to be careful because his platelets are so low (bruising or bleeding concerns). He is trying to do some of the exercises he learned from the physical therapist when this first happened. We were thinking back to when this first occurred and it was at a time when he was getting platelet and blood transfusions. So, we aren't sure if there is a connection between the frozen shoulder flare-up and the transfusions or maybe even the very low blood counts.
I will have another update after we meet with the appointments tomorrow.
Specific Financial Needs and Update: Advertisers
Thanks
for all of those who are still sending funds and gift cards to help
bridge the gap until we receive his first social security disability
payment in April. I'm still looking for a job and I wouldn't turn
anything down and this point. So, if you have an job opening at your place of employment, please let me know. I'm ready to start back substitute
teaching. So far I have two dates set-up to sub. I think I am ready to go back to school
this semester too. Two classes Jan 12-March 22. It will be tough, but
I need to finish this degree If I want to get a better job. So, please
be praying for this.
Also, we have a specific need: Ellie has made a club volleyball team and we need to make the final payment to allow her to keep playing. If I could get a few people who own their own business or in charge of advertising to advertise in the Dayton Junior's Volleyball Photo Yearbook, it would subsidize what we owe. Every dollar we receive in advertising credits her fees dollar for dollar. We need $500 by February 1. Sure, this is a luxury, but we hate to penalize Ellie for all her hard work in making the team. We aren't asking for any cash donations, just advertising. Here is the advertising price sheet and what the yearbook looks like:
Thanks for your help.
Also, we have a specific need: Ellie has made a club volleyball team and we need to make the final payment to allow her to keep playing. If I could get a few people who own their own business or in charge of advertising to advertise in the Dayton Junior's Volleyball Photo Yearbook, it would subsidize what we owe. Every dollar we receive in advertising credits her fees dollar for dollar. We need $500 by February 1. Sure, this is a luxury, but we hate to penalize Ellie for all her hard work in making the team. We aren't asking for any cash donations, just advertising. Here is the advertising price sheet and what the yearbook looks like:
Thursday, January 1, 2015
The year ends with Transfusions.
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!
Subscribe to:
Posts (Atom)