Forum Replies Created
Mark — you have a lot to learn. Start with the books the mds foundation will send you. Get a copy of that bone marrow biopsy. It should be several pages long with pictures and arrows point to blood samples. Remember the report will show what is not normal in your blood. Learn about your blast. When I read your blast were low this is good. The higher the blast the greater the problem. Can it be fatal? YES
Item 6 . If for some reason you need another BMB — Send it to two labs. I am sure your insurance company will a prove it. This BMB is very important. When you do you BMB you should have a fish test done which gets into your chromosomes. How long does a transfusion last? Very one is different. I have been living with MDS for 14 years. I just turned 82. Will MDS kill me maybe their are 14 other cancers that can also kill me. Should I worry about all of them? I have said enough. Don’t want to confuse you. JUST READ AND LEARN
I am 81 years old and in 3 weeks I’ll be 82. In 2004 & 2005 I had 20 transfusions, two units every 2 weeks. revlimid was approved for use on MDS patients in 2005 . I was put on in DEC. of 2006. That means DEC> of 2020 I started my 14 year. It took 4 mounts to kick in. No side effects. I’ve had 3 BMB. in 2004,2007 and 2012 the key in all 3 BMB my blast were at 2. I’m not sure how many more patients are out their like me am I the only one?
Angels: A fish test is a chromosome test to see if their are any abnormalities in your chromosomes. That might be the same as mutations test. Can you tell me what mutation will lead to leukemia? I just pulled out my last BMB which was date 2012. The report including the fish test was eleven pages. Angels: I’m not sure if I can get across MDS is your bone marrow is failing for many reasons. Reasons which is not important to you. That is not going away. 70% of us will not come down leukemia. We will sarcoma to bone marrow failure. If you come down with leukemia you still have bone marrow failure. Doctors will treat the leukemia because they can”t treat the the bone marrow. Chemo is not good for bone marrow? A transplant might be the answer?
Kevin : If your going to have a BMB done send samples to two labs and have a fish test all done at the same time with the one sample. Ask the doctor when samples will be leavening his office and how will sample be handled. He won’t like that. Don’t do samples on a Friday evening. When you get the reports back get copies.
Report should be 4 or 5 pages with pictures of slides and arrows pointing to findings. Remember the pathoglist
job is to pick out of the sample everything that doesn’t belong in a normal bone marrow. In that report you will be given a number of blast that will give your doctor how he will start some type of treatment if any.
Cammie : You might want to read in this forum posted by Rose Eden Guanzon Dated April 4, 2019 titled Transplant Diary. It is worth reading.
Jack : I can only tell you my story. I have been on Revlimid since 2006 or 13 years. This Dec. I start my 14Tth. year. I’ve had 3 BMB over the years my last one being in 2012 my blast at that time was 2. I am 81 and since 2006 I have led a normal life thanks to this drug. How will I know when it stops working? All of the numbers will go down. Do I increase the dosage? At that point a BMB will be needed and if the blast are 5 or under I can increase the dosage as high as needed. Blast come back over 5 I’ll have to think about what my next avenue will be. Do I come off it for some time and come back on it? It took 4 months for the drug to start working. If my doctor would have taken off it in the 3 month I might not be writing this. How many doctors take the patient of the drug before it gets to work? I hope this little bit of my story will be of some help and more then that give you some hope. Remember 70% of use will not come down with cancer.
Mary– I have been on Revlimid for 13 years. I was put on it in 2006.
E mail me at firstname.lastname@example.org and I will give you my home phone and you can call me or give me your number and I’ll call you.
Andrea— I am pretty sure medicare is only good in the state you live in. Except if you are on vacation and find your self in another states ER. If you could use medicare across states lines that would be the ideal plan.
Pat — I’ve been living with mds for many years. Read a lot of medical books and are still reading.
Right now you have two illness. Mds which his bone marrow is failing. And cancer of the blood. He is in reemission on the blood cancer. The question I would have is the chemo going to damage a fragile bone marrow? I don’t no if your love one could handle REVLIMID. Revlimid is listed as a chemo drug but it is not. It was listed as a chemo drug for reimbursement reason? For many years it was not listed as a chemo drug. Their is no drug that will kick start your bone marrow not yet . 70% of us will not come down cancer. So what do we do? If we need transfusion we get transfusions. I met a man and his wife at a MDS forum in NJ. The man was living with MDS for 17 years and had 350 transfusion to date. I did not ask him about iron over load .Because he had to be on the pump or the iron over load would have killed him. This man didn’t give up he learn to live with it. It’s a mind thing as well ” their are 31 days in a month so if I lose two days a month getting transfusions and I can live a almost normal life the rest of the month what is two days ” That quote was from someone who had MDS I new and live 15 minutes from my home that was not me every drop of blood flowing into my veins drove me crazy. Two units of blood flowing into my veins for a total of 6 hours. He had a different mind set. I needed someone else’s blood to keep me alive and it did not sit well with me. That was in 2005 that was a dark time in my life. I am lucky that REVLIMID was approved for MDS patients in 2005 and I was placed on it in 2006 to my doctor at the time it was a new drug. She said ” we can not keep on with these transfusions so we have too try something so I am going to try REVLIMID.” So can I make it to 85 I am 81 now ? 13 years and still counting with no transfusions. Will some other illness take me down and not MDS maybe? Their are so many things that can do that should I dwell on all of them ? So why worry about MDS.
Pat — since his blast are 3 and he is in remission can he be put on REVLIMID a pill which could keep him in remission ? I’ve been on REVLIMID for 13 years and my last BMB was in 2012 and my blast was 2.
In 2004 I was getting two units of blood every 2 weeks . I was put on REVLIMID in 2006 and have had a normal life taken a pill everyday. REVLIMID WILL STOP WORKING IF MY BLAST GO ABOVE 5. Talk to your doctor . It depends on the doctor some doctors go by the book and others are game. I’ve had 5 doctors over the years and they are all different.
I am 81 years old. As of June these are my lab results:
HGB — 13.0
WBC —- 4.4
Victoria : If you are going to have BMB . Suggest you send samples to two labs. I am sure your insurance company will approve. Take the time and pick the labs. The samples will be taken at the same time.
Andrea : I am 81 and have started my 13 year on Revlimid no side affects. It took four mounts to work. I have been leading a normal life ever since. I have 20q del. I have only one question regarding Revlimid what are your blast? My blast have been a constant 2. A doctor who has worked with Revlimid for years told me You can increase the dose as high as you want as long as the blast remain under 5. This doctor feels it stops working if your blast go higher 5. I hope this helps a little bit.
Eric. I’m not writing you to frighten you? When your HGB goes to 7 or 8 your doctor will be sending you for blood . I was getting 2 units every 2 weeks that was in 2004 in 2006 I was put on Revlimid and have been drug starting my 13th year and I have live a normal life. I am 81 go to the gym 2 times a week.
You should have a BMB and a fish test. Have that test done at the Mayo and if you real want to be sure of the results send that valuable marrow to a second lab. You have to start with a BMB. I am not sure you have had this test done? The Mayo is one of the best. The Moppet Inst. in Tamper FL. has the largest number of MDS Patients in the USA.