[plantcollector]

I wish I had some advice for you, but I do not. I am a MDS patient (5q-), and I have been very fortunate. I was diagnosed 10 years ago at age 61. Through the years doing reading, I found out so many people are truly suffering with the disease. Your husband (young) sounds like one of them. I hope that your husband is in a very good care situation – a place that really understands this disease. Wanted you to know that there are people out there who have read your message and who do care. I will be thinking of the two of you in your VERY difficult time. God bless you.

[plantcollector]

I took Revlimid for awhile (over 1 year). I have Part D, and yes, the co-pays are still SO expensive. Contact the Chronic Disease Fund. If you qualify you may be able to get help with the co-pays. I did. I was surprised that a lot of people would qualify with the the financial requirements they have. I see you posted this in May. Hope you see this answer. I will check the forum from time to time to see if you respond. I could get in touch with you personally to provide you with more details. The financial help I received was GREAT. Wish Revlimid had been the drug for me. There were various side effects and no clear-cut indications that it was helping while I was on the drug. But I seemed to make improvement after getting off it. I am also 5q del. Currently in sort of a "remission" stage. I have been off Revlimid since last August, and I have not had a transfusion since last October. This is nice!

[plantcollector]

Zoe, you might check with The Chronic Disease Fund about their grants. Revlimid is one of the drugs they will consider for a grant. There are certain requirements which need to be met as far as income is concerned. I had a grant for last year, and it covered a lot of my co-pays for Revlimid. I have Plan D drug insurance, and I am over 65. I have talked to a couple of people there, and they are nice to deal with. You might want to gather information for the future in case you need to go on Revlimid. They might be able to tell you whether you might qualify for a grant. They also have a web site to check out. Good luck. If you ever take Revlimid hope it helps you. It has not worked for me, and the side effects have not been good. But it is not a 100% drug. There are a fair amount of 5q- patients who do not respond at all.

[plantcollector]

That is wonderful! Thanks for posting this. Don’t think I have have ever heard of anyone with that many years. It certainly reflects what a lot of people say about MDS – every case if different.

[plantcollector]

Thanks for the reply Jim. Glad to hear that you are having such good success with Revlimid. Sounds as if the reduced dosage is helping with the side effects. I have had several of those including blood clots in one leg. I keep hanging on with the drug hoping it will finally help. Stange to hear that your platelet count has gone up with Revlimid. Doctors do say that every case of MDS is different. I have had high platelets since 2001 (then at 1,800), but they have lowered to normal with Revlimid. I took another drug for many years to reduce platelet count. Hope Revlimid keeps working for you for a long time. It has for many people.

[plantcollector]

sgoodman – do you have any idea what the reasoning is in taking 7 days off? My doctor wondered whether going off the drug for a short time had some sort of effect. Thanks.

[plantcollector]

Thank you, sgoodman, for your reply. I did not know if anyone had any other dosing (for MDS) other than 1 per day. Will find out with my next CBC whether going off of the drug for a short time has finally produced a response. My hematologist did have a long conversation with the pharamcuetical company. They came up with the idea to go with 5mg. 21 days and then 7 off. I am not sure why, but will know more later this Monday. Maybe the 5 mg. was recommended because of my side effects. If my HGB has dropped way down again then that is my last attempt with Revlimid. I sure thought it would be my "ace in the hole" because I am 5q- and no other chromosome abnormalities. I did not become transfusion dependent until 7 years after diagnosis. But I have been trying with Revlimid since almost the first of 2009. I am so lucky not to be suffering with this condition like others are. But not looking forward to moving on to a long-term Vidaza regimen unless it is positively necessary. Hope you are seeing good results with Revlimid. Thanks again for responding.

[plantcollector]

The Celgene web site – http://www.revlimid.com says "90% of patients who responded to Revlimid did so by the end of 3 months". This quote must refer to a clinical study. Unfortunately not all of 5q- patients respond. Hope it works for you.

[plantcollector]

Hello Kenneth. Yes I just stopped Revlimid on November 18th. It was not doing anything for me, and it is possible that the problems with my gut were being caused by Revlimid. I could not "pin" it on anything else. The 5q- is my ONLY chromosome abnormality, so I was hopeful that Revlimid would work for me. I have been transfusion dependent since last Fall. After the 1st of the year I guess it will be on to Vidaza. I know that it takes maybe as many as 4 rounds to see any results. But I could put that on hold for awhile and rely on transfusions. I have been getting RBCs about every 4-5 weeks. I rarely get a transfusion unless my hemaglobin is under 7. My body has adjusted to the low counts since 2001. I am lucky. Actually I have been down to 5.9 and not really felt the effects very much. Hope to hear from you as to the results of Revlimid. I know that many have had good results. But it is not 100%, of course. And some do not see any results for quite awhile. I am sure that you know about the problem of blood clots with the drug. So watch that. I developed a couple in my leg after taking the drug 3 months. I was off for awhile and went back on it at the 5mg. level for a couple of months. Then in July I went back at 10 mg. Still no results. Good luck. You just might be one that does well with that. I sure hope so! Sylvia

[plantcollector]

I lived for many years with a Hgb in the 8s. I felt pretty good, and have always considered myself fortunate. Guess my body compensated in some way. Last year the Hgb counts started dropping, and I required transfusions. I do okay at a low number, but now am getting transfusions when the number goes to about 7.5 or lower. I have had a low of 5.9, and sure was walking around. The stairs get difficult at that level though. Was hopeful that Revlimid would help, but think it will be discontinued soon. Guess I am a 5q- patient not helped with this drug.

[plantcollector]

Thanks friends for the response. I am going back on 10 mg. and will try that for at least 3 months. After that we’ll have to evaluate what to do next.

[plantcollector]

Laurie, I wrote a kind of long message, so I decided to send it directly to your E-mail address. I was so sorry to read your posting. The plant collector.

[plantcollector]

Thanks for your input. I have been off Revlimid now for 2 1/2 weeks. The blood clots (not major) in my leg are improving I believe. I had another ultrasound two days ago to check this. I hope to go back on Revlimid soon at the lower dosage. I think that perhaps the drug was just starting to show a positive effect when I stopped taking it. I am glad you wrote because my doctor has mentioned taking the Revlimid along with a blood thinner. Glad to hear that this has been tried before.

[plantcollector]

Thanks for your response Elena. I have been off Revlimid now for just two weeks. I do think it was starting to work. Hope to go back on it soon at the lower dose of 5 mg. I had to have two more units of red cells last week when my hemoglobin dropped to 6.4, but it was up to 9.0 yesterday. First number that high since last Fall. Even with the two units added that 9.0 is a little high, so the Revlimid might still be having an impact even though I’ve been off it for two weeks. Hoping that’s so. Hope your father is getting the care and advice he need. Good luck to him. I’ll be thinking of you.

[plantcollector]

If you had a bone marrow biopsy then maybe by now you know which chromosomes in your bone marrow that are abnormal. You should also be told what kind of MDS you have: RA, RARS, etc. There are several. In my case the only chromosome in my marrow that is "not normal" is chromosome #5. The long arm (Q) has some of the genes that have been deleted. I was not born that way, but sometime later in my life this has happened. Usually, that type of MDS is referred to as "5q- syndrome". This is not a risk category, but further defines the type of MDS I have. Since you are a very new patient I would keep asking questions, as you have here. The more knowledge you have the better you will be able to deal with your condition. I believe that the MDS Foundation has a patient information booklet that you can download to your computer. Start reading there and ask all the questions you have. I also think that the Leukemia/Lymphoma Society has something like that too. You can find that organization online. Try contacting them for any information they can send you or you can view with your computer. Good luck on your journey.

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