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rar
ParticipantI had MDS-RAEB-2 with 15% blasts. I went on a clinical trail and got the blasts down to 2%. I then had a transplant 2 years ago. I had some rough spots on the road to recovery. I am waking up on the green side. I am almost 76.
Ray
ParticipantA transplant is a risky procedure with 30% cure rate a 3 years, other treatments have a 3 year survival of 4%. I choose the transplant and had some rough spots. I would hate to go through that again but if necessary I would. If you look at the other MDS forum you will see stories of people denied transplant who meet a somewhat unpleasant end. My transplant doctor says he does transplants not to extend life, but so that I can live life. At present I have a good quality of life not much different than 2 years ago.
Another option is immune cell therapy as pioneered by Dr. Riddell. They remove some T cells and by genetic engineering train them to be cancer cell killers. They re-inject and the cells do their job. It is still phase 1 at MD Anderson and others. My oncologist thinks it may replace transplants in a few years. It was not available when I had my transplant.
TPN is the stuff they give you for intravenous feeding. It is glucose, amino acids, vitamins and minerals. It will keep you alive. You don’t gain weight on it. I was unable to eat or drink for about 3 months. the first 6 weeks I could hardly move and I lost 40 pounds, mostly muscle. I was then put on TPN for 6 weeks and I stabilized. A month of that was at home with the TPN and pump in a backpack that I used 18 hours a day. I currently weigh 158.6 at 5’9″. This is a healthy weight. I would only be concerned if someone is loosing muscle weight or a large amount in a short time as I did. The secret is to keep exercising daily.
I am not a quitter. I believe with plenty of exercise to keep strong, a positive attitude, and a good caregiver you can beat the odds. Combined the odds of MDS and the infections I had, survival was less than 10%. But I beat them.
Platelets are a problem at less than 10. At that point you get a platelet transfusion. Mine were as low as 5. It is no big deal.
In general MDS is not a heritable condition. My father died of leukemia about 40 years ago. I think that was before they invented MDS.
I wish you both the best of outcomes. Ask if you have any more questions.
Ray
ParticipantI was almost 74 when I received my transplant. I survived. That was a year and a half ago. Age was never mentioned before the transplant. Transplant is the only cure for MDS. other than MDS how is your health.
Ray
ParticipantHave you considered a transplant?
Ray
ParticipantWith intermediate risk chemo may give the best results. Listen to your doctors. Looking for a donor now is a good idea. I went from MDS that was so mild it would never need treatment to very high risk that would kill me in 5 months. 3 different oncologists said I needed an immediate transplant. I never felt very sick but the tests were conclusive.
I had 2 bouts of weight loss. I lost 40 pounds in 6 weeks. I was put on TPN for 6 weeks and stabilized. In the 3 months I neither ate or drank anything. The weight loss was obvious. Eating again and a lot of exercise put 30 pounds back on. Another time I lost 20 pounds. I think the cause was prednisone. This time I was eating 5 meals a day with a lot of eggs, yogurt, protein drinks etc. and gradually put the weight back.
I wish you and your father well. It is difficult being a caregiver. Keep me posted.
Ray
ParticipantHow did the meeting with the transplant doctors go? Is your dad having success with his present treatment? How fast is the MDS progressing? These are some of the factors in deciding on a transplant. If he is going to have a transplant it is best to do it when he is strong as this has the best chance of success. I had my transplant when I was barely having any symptoms. I was high risk and progressing rapidly.
Ray
ParticipantWhen I was diagnosed with MDS RAEB2, the high risk form I had a 50% chance of living 5 months with a 3 year survival rate of 4%. I was given an experimental drug that in 2 months reduced my blasts from 14% to 2%. The doctors told me that no drug cures MDS, after a while they stop working. I was healthy (for a 73 year old) so I was told have the transplant when you are in your best health. If you wait the chances of survival diminish.
Given the choice of living pretty normal after a transplant cure was about 40% at 3 years, or if I went on drugs that give temporary remission I stood a 4% survival rate. It wasn’t hard for me to do the math. Why do you feel that a transplant is too aggressive?
I do have a friend of a friend who has been on Vidaza for 3 years. It worked for a while but she is now at the end of the line.
Ray
ParticipantThere is no chance of your being a full match. You may be a haploid match if you inherited the proper genes from your father. Some places do haploid transplants if no full match is available. There is also cord blood transplants.
My donor was my sister. The match proves we had the same mother and father so we are related. The transplant was done at UCH (Aurora CO).
I had GVHD twice. The first time along with CMV and c.diff it almost killed me. the second time it was a moderate to severe case. It was controlled with drugs and I did not suffer much. That was 6 months ago and I am still on the drugs.
When I was diagnosed with MDS RAEB2, the high risk form I had a 50% chance of living 5 months with a 3 year survival rate of 4%. I was given an experimental drug that in 2 months reduced my blasts from 14% to 2%. The doctors told me that no drug cures MDS, after a while they stop working. I was healthy (for a 73 year old) so I was told have the transplant when you are in your best health. If you wait the chances of survival diminish.
Ray
ParticipantMy story start to finish is under “New to MDS”
Ray
ParticipantI know most doctors/hospitals won’t do transplant on patients over 70 and say that they won’t accept donors over age 65. However, I hear that MD Anderson in Houston does.
Transplant was done at University of Colorado in Aurora. I beat them on both age barriers. No one ever mentioned age on doing the transplant. I look younger than my age, but they have records and know how old I am.
MDS is unpredictable. I went from MDS so mild that it would need treatment to needing a treatment in a few months.
Ray
ParticipantThe good new first. I was in the hospital for the transplant about a week, it seems to vary from a week to a month. From my BMB I am 100% engrafted with donor cells. Platelets had been 70, about 3 months ago they went up to 140 and stayed there. From looking at blood tests the only anomaly is that I have xx instead of xy chromosome. They talk about cure at 3 years. I am half way there. Doctor says the chance of relapse at this point is low single digit. The transplant was sort of a non event. I slept through the whole process. It is just the start of a long journey.
If you don’t want the bad news stop reading here. While the hospital stay was a week I was required to have a 24/7 care give for at least 3 months and to be with in 15 minutes of the hospital. The environment must be sterile to avoid infection as you have almost no immune system after transplant. For the first month I had hospital visits 7 days a week. At 3 months post transplant I came down with CMV, GVHD grade 4, and c.diff. It removed the entire gut lining so I couldn’t eat for my 2 month hospital stay. I went from 170 to 130 pounds and could barely walk. Doctors and nurses thought I would not survive. At 1 year I came down with a different GVHD. 1 month on 120 mg. prednisone along with a dozen other meds cured it, but left me pretty messed up and weak. I am pretty much over it and yesterday I walked 5 miles with no difficulty. If needed I would go through the transplant again.
Ray
ParticipantI was 73 when I had a transplant. That was a year and a half ago. I am doing well. The chemo and radiation with the actual transplant was probably the easiest part of the whole process.
Ray
ParticipantThe only cure for MDS is a stem cell transplant. I was cured.
Ray
Participant18 months past SCT and doing fairly well. The saga of my transplant, start to now
Since there are people constantly coming and going I thought it might be a good idea to post my transplant experience from start to now at 18 months. Keep in mind that this is a risky procedure and this is a summary of my treatment. It seems there are as many treatment modalities as there are patients. Most transplants have some bumps in the road. Mine were probably a little worse than normal.Feb 2014 Routine CBC blood test by PCP showed slightly low red, white, and platelet counts. PCP refereed me to a hematologist. I was somewhat worried when his office said Cancer Center. Hematologist did some more testing and said I had a very mild case of MDS (bone marrow cancer) that probably would never need treatment.
May 2014 Return visit to oncologist resulted in more tests including a bone marrow biopsy. BMB showed 14% blasts (cancer cells). The diagnosis was now MDSRAEB2. Without treatment the 50% survival time for this is 5 months. I was only 73, much too early to have this fell me. The only cure is a transplant. All three of my sisters were 10/10 HLA matches. All three of my brothers were 0/10 matches. We picked my baby sister (68). Blasts were another problem. For a transplant my doctors wanted blasts below 5%. They found a clinical trial for a drug (AG-221) that works for people who have a IDH2 gene mutation, which I had. I was enrolled as lucky 13th patient in the world to receive this drug.
A side note on clinical trials. Clinical trials is how breakthroughs in drug treatment and new drugs occur. About 5% of eligible patients will participate, slowing research progress. During my treatment I was enrolled in 6 different trials.
June 2014 In a month on AG-221 my blasts went from 14% to 2%, but the blood counts did not improve. I was advised that this drug was probably not a durable cure for me and wanted a transplant ASAP. I asked what were we waiting for. I underwent reduced intensity chemo and total body irradiation. No side effects from either.
July 1 2014 Happy rebirthday to me. My sister donated the stem cells and that were immediately transplanted. Due to drugs they gave me I slept through the whole process.
July – Sept 2014 We were required to be within 15 minutes of the hospital for these three months. For the first month I was monitored every day including weekends. This tapered off to 3 times a week and then twice a week. We were fortunate to be a guest of Brent’s Place. The provide 16 apartments at no charge in their building for people undergoing blood cancer treatment. Most of the apartments are for kids, but they have two for old codgers. They are very conscious about cleanliness due to high infection rate among those who have suppressed immune systems. They also provide entertainment and many meals. One evening I had dinner delivered to our room by Miss Colorado. They also provided premium seats to the Rockies and Bronco games, to museums, etc. I regained much of my strength and was doing 5 mile daily walks. I was yearning to be able to sleep in my own bed again.
Oct – Nov 2014 I did get to spend two nights back home and started running a fever. I went to the ER and in 5 minutes I was in a hospital bed. It turned out that I had CMV, c.diff, and graft vs host (GVHD) grade 4 which completely destroyed my gut lining. I was unable to eat anything for 2 months. I lost 40 pounds. In the first 6 weeks they were making no progress. Survival rate for this condition is less than 20%. I felt like I was in prison. I was not allowed to even leave my bed unescorted. They packed me in an ambulance and drove me to another hospital. An ambulance is not a comfortable mode of transportation. Fortunately the ride was only one hour. In two weeks they worked out a game plan that allowed progress. They put me on TPM (IV feed) and the weight stabilized. End of Nov I was discharged and sent home with home TPM for another two months. TPM does not make a good Christmas diner.
Dec 2014 – Jun 2015 After the hospital stay I was mostly cured of my ailments but extremely weak. The home physical therapist was very proud when I was able to walk a block. In Jan. I was weaned gradually off the TPM and started some solid food. Recovery went slowly but surely and I was back to walking 3 miles a day and feeling much better. In May and June they started tapering me off my transplant drugs.
July 2015 My first rebirthday was July 1. The doctors thought I was doing so well that I should stop taking my small doses of transplant meds. 3 days later I broke out in a spectacular example of GVHD. I had a rash from the soles of my feet to the top of my scalp that felt like someone was sticking pins into the poison ivy like rash that I had. The GVHD also effected my eyes and mouth. Back onto transplant drugs. No change. Increase prednisone which topped out at 120 mg. a day. Some pretty nasty side effects from that dose.
Nov 2015 Pred is now down to 7.5 mg. a day. My oncologist says that I have a very strong transplant and that my chances of relapse of MDS or getting AML is less than 20%. He said that I will probably be on some immo suppressant drugs indefinitely so I will have a very low risk of GVHD. When I stopped the drugs on July 1 my pred was 5 mg. once every 3 days. The doctors thought that at such a low dose would allow for stopping the drugs. Now they agree they tapered too fast and will go slower this time. Overall the oncologist thinks I am in very good shape and even more so when you consider what I have been through.
Fortunately I have Medicare with the plan F supplement so medical charges have been zero. Medicare shows this treatment resulted in 523 Medicare charges totaling about $1.5 million. The VA is providing me all my drug needs at no charge. It seems like I get a package from them almost every other day. If I knew then what I know now would I still opt for a transplant? Silly question, of course I would. Would I have survived without my trusty care giver. I don’t think so.
ParticipantMedicare can be a problem. I have read that Medicare will only pay if you participated in an approved clinical trial. I was part of an approved trail. Medicare denied the $300K for the transplant but had no problem with the other $1M. The hospital appealed and the transplant was covered. It is best to get pre-approved. I have had other procedures denied because the doctor’s billing clerk refused to code it properly. Since my donor was related I was responsible for all her expenses.
It may be outdated see http://www.medpagetoday.com/PublicHealthPolicy/Medicare/21566
Ray
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