Hello,
I have been on 100 mg of thalidomide as maintenance for 11 months now. My oncologist from the hospital where I had my stem cells transplant wanted me on maintenance for one year...I am trying to get an appointment to see her since I haven't seen her since she put me on the maintenance and I now want to come off the drug. My regular oncologist, whom I see every three months, doesn't want me to come off the drug....I am presently in complete remission and feeling very well with the exception of having vision problems, long distance mainly.
Does anyone know if thalidomide can cause vision problems?
I can't find any sources that say it does.
I also am starting to lose my hair again. Does anyone have an answer for that?
I now feel its time to come off the thalidomide and hopefully I can stay in remission for a long time on my own. However I now worry that because I did take the thalidomide as maintenance that should I relapse the myeloma will now return aggressively and be resistant to any drugs and harder to control.
Does anyone know if that's true?
This is the first I've used this forum and I have found it very helpful.
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Re: Thalidomide maintenance for multiple myeloma
Hi there,
My dad has multiple myeloma and was on Thalidomide for about 11 months as well. As far as i know, it does not cause vision problems (although everyone is different and anything is possible). More likely, Dex would be the culprit.... are you taking Decadron (dexamethasone steriod) as well? That is well known to cause vision problems and also cataracts ... as well as some other lovely side effects.
The same for hair loss - i have never heard of that before ... perhaps that has something to do with your transplant (?).
Thalidomide is a good drug for multiple myeloma, pretty tolerable for many folks (for a while) - but then everyone always seems to have to stop it.... usually it's the neuropathy that eventually becomes too much. My dad is 80, he took it for about 10 months and then they took him off it, because he was starting to have some balance issues (due from neuropathy likely). It made him very tired, but that's about it.
Good luck with your recovery.
My dad has multiple myeloma and was on Thalidomide for about 11 months as well. As far as i know, it does not cause vision problems (although everyone is different and anything is possible). More likely, Dex would be the culprit.... are you taking Decadron (dexamethasone steriod) as well? That is well known to cause vision problems and also cataracts ... as well as some other lovely side effects.
The same for hair loss - i have never heard of that before ... perhaps that has something to do with your transplant (?).
Thalidomide is a good drug for multiple myeloma, pretty tolerable for many folks (for a while) - but then everyone always seems to have to stop it.... usually it's the neuropathy that eventually becomes too much. My dad is 80, he took it for about 10 months and then they took him off it, because he was starting to have some balance issues (due from neuropathy likely). It made him very tired, but that's about it.
Good luck with your recovery.
Re: Thalidomide maintenance for multiple myeloma
Hi!
I am on Revlimid and have been since my translplant in 09 as a maintenance as well. I have had no problems with that whatsoever, but I am having problems with my vision. Im sure it has to to with the Dexomethasone(steroid). My problems is I cant see close. I have been told by others that this med keeps the myeloma under control and I am afraid to get off it. I have neuropathy really bad at times on my legs, but my blood work and catscans have all been great. Good luck and keep fighting.
I am on Revlimid and have been since my translplant in 09 as a maintenance as well. I have had no problems with that whatsoever, but I am having problems with my vision. Im sure it has to to with the Dexomethasone(steroid). My problems is I cant see close. I have been told by others that this med keeps the myeloma under control and I am afraid to get off it. I have neuropathy really bad at times on my legs, but my blood work and catscans have all been great. Good luck and keep fighting.
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Joanne
Re: Thalidomide maintenance for multiple myeloma
Hi,
I'm on rev maint. for 9 months. 1 year ago before my stem cell txp I had my eyes examined, and was told I had developed cataracts from the Dex used as part of my VDD therapy. The Rev doesn't seem to have made them worse. Eventually I'll get cataract surgery but not until I have too. Good Luck, Carol Y
I'm on rev maint. for 9 months. 1 year ago before my stem cell txp I had my eyes examined, and was told I had developed cataracts from the Dex used as part of my VDD therapy. The Rev doesn't seem to have made them worse. Eventually I'll get cataract surgery but not until I have too. Good Luck, Carol Y
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CarolY - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 10/09
- Age at diagnosis: 54
Re: Thalidomide maintenance for multiple myeloma
Thank u for your comments........
My transplant was 14 months ago with 11 months of thalidomide maintenance now.
I don`t believe my problems stem from my transplant....My hair did grow back in and my
vision at that time was o.k.....I`m not on anything at the moment but the thalidomide but
recently was diagnosed with high blood pressure so I`ve been put on medication for this.
No steroids for over a year now.....
I`m not sure if there is a difference between the thalidomide maintenance or the Revlimid.
I`m on thalidomide because of the cost factor......Is there a certain length of time to stay
on maintenance or until relapse occurs.....I worry that if I stay on it for too long I will become
resistant to it and it won`t work when I need it although I do realize there are other drugs
on the market.....
Other than my hair and my eyes I am doing extremely well for which I am grateful.
Is it the maintenance or the transplant that has kept me this well.....this we don`t know....
I have absolutely no other side effects and carry on with my everyday activities
although I don`t work any longer.....
I`ve always worried whether maintenance was the way to go
since the jury is still out on this...thank u for your replies.....I wish u continued success.....
OlgaF
My transplant was 14 months ago with 11 months of thalidomide maintenance now.
I don`t believe my problems stem from my transplant....My hair did grow back in and my
vision at that time was o.k.....I`m not on anything at the moment but the thalidomide but
recently was diagnosed with high blood pressure so I`ve been put on medication for this.
No steroids for over a year now.....
I`m not sure if there is a difference between the thalidomide maintenance or the Revlimid.
I`m on thalidomide because of the cost factor......Is there a certain length of time to stay
on maintenance or until relapse occurs.....I worry that if I stay on it for too long I will become
resistant to it and it won`t work when I need it although I do realize there are other drugs
on the market.....
Other than my hair and my eyes I am doing extremely well for which I am grateful.
Is it the maintenance or the transplant that has kept me this well.....this we don`t know....
I have absolutely no other side effects and carry on with my everyday activities
although I don`t work any longer.....
I`ve always worried whether maintenance was the way to go
since the jury is still out on this...thank u for your replies.....I wish u continued success.....
OlgaF
Re: Thalidomide maintenance for multiple myeloma
After my SCT I chose not to take maintenance drugs. So far, so good. I am eight months out, and at my last three month visit my M spike had dropped to zero. The more I read of troubles with maintenance, the gladder I am I chose not to do it. However, time will tell if I made the right choice. All this gives real meaning to the phrase, "The practice of medicine is as much an art as a science." Hopefully it's both.
As to cataracts, I had mine removed just a month before I was diagnosed, and have always wondered if multiple myeloma causes cataracts.
As to cataracts, I had mine removed just a month before I was diagnosed, and have always wondered if multiple myeloma causes cataracts.
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
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