Thalidomide or Revlimid [Del 20q]

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• January 20, 2005 at 5:36 pm #3456
  vanguardsheet

  Member

  Hi, my Dad may be starting on Thalidomide soon as his PLT, WBC and HGB is low. I read a lot of literature and its dosages vary amongst docs. Can anyone share their dosage, any side effects, how long they have taken, and their response please?

  As I read that Revlimid a similar compound with promise, can anyone share their dosage, side effects, how long they have taken and their response please.

  Or if you have switched from Thalidomide to Revlimid or from Revlimid to Thalidomide?

  In particular, if you have chromosome 20q- deleted and if Thalidomide, Revlimid or any other compound works for you, kindly please let me know. This is because my Dad has a similar chromsome deleted.

  Thank you very much and God Bless.

  January 20, 2005 at 6:03 pm #3457
  sarah

  Member

  What are your Dads current counts?

  January 20, 2005 at 6:06 pm #3458
  vanguardsheet

  Member

  Sarah, PLT: 70, WBC: 1.06, HGB: 8.6.

  He has MDS with myelofibrosis. Had blasts previously but blasts was eradicated following a BMT. However, his counts have stayed low.

  Sarah, any experiences to share?

  January 20, 2005 at 7:04 pm #3459
  sarah

  Member

  We have had no experiences with any of the drugs mentioned. Others on forum who have will respond soon. Hope your Dad feels better soon.
  Sarah

  January 20, 2005 at 8:12 pm #3460
  Neil

  Member

  Have not had personal experience with the drugs. Have read considerable and have spoken to a few who have.
  I share the 20q- Am taking Procrit to support RBC/HGB. Platelets are stable at 10,000 for about 5 years.
  Would discuss these points with the docs.
  Counts (particularly platelets) will decrease before going up. How much of a decrease?
  Thalidomide usually starts at 50mg and builds to 400mg—maybe. The side effects can be very nasty to some people—not all. Nausea, total confusion, fever, rash, and more.
  If counts go up it is generally temporary.
  Revlimid is an analog of Thalidomide. The components that create the side effects are removed.
  Why then risk the discomfort of Thalidomide?
  Have you explored Procrit. No side effects.
  Are your platelets stable? Any symptoms of low platelets?
  How about WBC count? Any infection problems?
  Those of use with a 20q- usually have a pretty good prognosis. What has your hematologist had to say regarding risk?

  January 20, 2005 at 9:03 pm #3461
  Carl

  Member

  I started on Thalidomide at 100mg a day in and the Hemo increased it after a month to 200 mg a day. I showed improvement almost from the start and after a month and a half my HBG did not go below 12.0. My Hemo said that I could take the Thalidomide as long as I could tolerate it and it was still doing some good. The side effects I experienced were sleepiness (no problem since I took it before bed), constipation, dry skin and numbness in my exteremities. He indicated that a few people can take it as long as 1.5 years, but due to the numbness (neuropathy) in my feet and fingers I finally stopped the Thalidomide in December ’04. I still don’t have my full feeling back to my fingers and feet, but they say I will after a few months off of the drug. My RBC count has slowly declined since being of the T. and I have started back on the Procrit.

  I can (and will) get on the Revlimid as soon as the drug is approved by the FDA for public use, especially since it show promise with my 5q- chromosome deletion. I could not get on a trial because they were all closed when I wanted to start it.

  My current regular medication is Neupogen shots twice a week along with vitamins and Procrit when needed. I started home (self) injections of Nuepogen some time back for the convenience and have had no problems. My WBC counts are normal to just below normal on most test days. I don’t have any problems with excess blasts or platelets.

  I hope the Thalidomide works for your Dad and the neuropathy does not present a initial problem. I’m ready for the Revlimid to be approved and hopefully it will soon.

  January 21, 2005 at 3:29 am #3462
  vanguardsheet

  Member

  Neil, Carl, thanks for your responses. I will ask about Revlimid. Looking at your ages, I feel for you all just as I do for my Dad even though we are miles apart. He’s 60 this year. Was DX in 2001 when I graduated from university. A blow which hit me so low and hard that I feel so deeply hurt for I’m his only child.

  My Dad’s RBC still holds out so I guess Procit, which is essentially a RBC aid, wasn’t needed. What I worry alot is that his WBC as his previous Neupogen shots help to marginally boost his WBC only. It does not last long [only a day or two?] or appear not to work. How frequently do you have Neupogen shots? Are there alternative compounds to aid WBC production?

  Revlimid was touted by a doc that it can change the way the marrow function? A very promising claim; But I have not found other reports which support the claim.

  Also welcome responses to my original thread from others. Thanks and best wishes to all.

  January 21, 2005 at 6:21 am #3463
  Naomi

  Member

  I took thalidomide about 3 months on a trial. I was like a zombie. Did not go anywhere, did not want to, slept a lot, had neuropathy in hands and feet and no energy. When I came off it, I was like a new person. Had to continue to have txs. the whole time I was on the drug.

  Started Revlimid 11/08/03. Started with 10 mgs. After 2 weeks broke out in hives. Stopped and then started up again 12/16/03 with 5 mg. Had my last tx on 12/8/03. My white count is below normal – around 2, my platelets are around 100,000 and my hgb is 12.9. I have had more energy this past year and have been able to do so much more. I just had a bmb taken and will get the results on 2/9. I will be on the revlimid trial until the end of 11/05. Do not know what will happen when I go off it, maybe it will be approved and I won’t have to stop taking it.
  I do have a couple side effects with it. I have tingling in my fingers , but still can feel with them. I have diahrrea and control it with imodium.
  My understanding is this is to help red cell count. The original protocol was to have people with low red counts and needing transfusions. There were two different protocols started one with 5q- and one without.
  I hope this information helps your dad to make some choices.
  Naomi

  January 21, 2005 at 6:35 am #3464
  Andrea

  Member

  Vangurdsheet, I know what you mean about the blow which hits you low and hard.You are much younger than I am, so sorry you are going through this at such a young age. My mom was never sick before this. Luckily I have two sisters. This is a great site for help and friendship. God Bless

  Is Revlimid appropriate for CMML?

  Thanks, Andrea

  January 21, 2005 at 11:45 am #3465
  vanguardsheet

  Member

  Andrea, I ain’t all that young already. Will be 29 this year but the blow is nonetheless vile and painful. Its still a challenge to manage his and Mum’s emotions, mask mine, go to work and maintain a strong face… At “better” times, I worry if it will turn down. At “lousy” times, I worry about what’s next.
  Sorry, I am not sure if Revlimid can be appropriate for CMML. Any one else can shed any light?

  Naomi, thank you for sharing. Its very helpful information and I will ask about Revlimid.

  January 21, 2005 at 2:33 pm #3466
  Carrie

  Member

  vanguardsheet,

  Hey!! 28 is young! I’m 29 and I’ll be 30 in May. We’re little babies .

  Age is but a number .

  I hope things get better for your dad soon.

  Carrie

  January 21, 2005 at 3:39 pm #3467
  Carl

  Member

  You can search this Forum for REVLIMID by clicking the search button at the top of the page. There is quite a bit of information about the drug.

  January 21, 2005 at 5:27 pm #3468
  Neil

  Member

  Ho long ago did he have a BMT?
  Is this part of the recovery process?
  Is he improving since the BMT?

  January 21, 2005 at 8:57 pm #3469
  Kirby

  Member

  I’ve had excellent results with Thalidomide.
  My counts all improved, I was RAEB-2 at 15% blasts and after 5 months I was 2% blasts.
  I’ve maintained at 100mg/day. Univ of AZ personnel said 100mg/day was sufficient. Some want to push it higher and get bad side effects.
  I tried 200mg/day for one week, too dizzy. Tried
  150mg/wk for 2 weeks, then settled to 100mg/day
  Some on the AA/MDS listserve are doing good at
  50mg/day, one lady has been on it for 18 months,
  her Hgb has improved.
  I took Procrit and Neupogen weekly with it for several weeks, now only take them every 8-10 weeks if the WBC or RBC indicate I need them.
  Counts are above or near minimum in all cases.
  Thalidomide is easy to try, if it does work it
  can show good results.
  Everyone responds differently so it is difficult to make comparisons.
  I have been on it for 9 months, some numbness in the hands and feet, but not too bad. Without it I feel I would already have transformed to AML.
  Hope this helps.
  Kirby

  January 23, 2005 at 3:24 am #3470
  vanguardsheet

  Member

  Neil, my Dad had his BMT (actually it was an SCT) in Nov-Dec. His counts climbed after the procedure but after day 100, it started to fall off. From what I understand, engraftment is a challenge due to the presence of myelofibrosis.

  Kirby and others, thanks for your responses.

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