Announcing: A New MDS Web Site!

[Carson]

I’ve just finished a new web site to help those new to MDS get started on their understanding faster and to chronicle my personal experience with the disease and its treatment.

You’ll find it at http://www.ecomdevs.com/MDS_Symptoms.php .

Since authors rarely catch all of their typos and mistakes, please email advice on errata. Also, many of you have much more experience with this disease than I do, so please inform me of content errors and suggestions for improvement.

Hope you enjoy it. I think it might help you explain MDS to your family members and friends.

[Sherm]

Your web site is really good, Carson. It effectively deals with an unfamiliar medical condition in a concise and as pleasant as possible way. Thanks for a very successful effort!

[friend of 5q]

I have a friend who is at week 5 on Revlimid. Symptoms are more noticeable with some swelling in hands and joint pain and of course fatigue. Do these symptoms subside as a patient gets closer to the 8 week mark?
Also when we drove into L.A. almost two years ago for a forum headed by Kathy Heptinstall, a pharmacist named Stacey Ness gave us her card. http://www.bioscrip.com where instead of Celegene charging $8000 a month, one could get the generic Lenalidomide for a lot less.
Anyone who has been on Revlimid for a while can you share the duration of the side effects…thank you.

[jimkufis]

Hello Friend of 5q. Jim Kufis here. I have been on 5mg/day of Revlimid since early October 2009. My first month I had sever side effects of diarrhea, gas, and acid indigestion. To alleviate the symptoms I skipped a Revlimid every third day. After a month these side effects subsided and I am now taking the 5mg capsule every day with minimal side effects. Side effects seem to very substantially from patient to patient and it is best to try and adapt to the drug if it is fixing the anemia problem.

With regard to the cost of Revlimid, I was told that price of 28 of the 5mg capsules has increased to $11,000. I suggest looking into Canada Drugs which can provide the generic version of Revlimid for a fraction of the price.

[Zoe]

OMG, I had no idea there was a generic lenalidomide! My insurance won’t cover that when I get to that point. They cover my Aranesp as long as I go to the hospital for the injection. I am trending down on my hgb. Maybe I will rebound, I have before…nonetheless, I am off to check the bio scrip page. Thank you 5q Friend for sharing! I don’t make anywhere near $11K a month! It is crazy.

Zoe

[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.

[Zoe]

Plantcollector, Thanks, I will check it out. Many 5q don’t respond to Aranesp, but I did. So I hope I can respond to Revlimid when I get there. Next labs this coming Friday.

Zoe

[Author]

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