Side Effects Of Thalidomide

I am about to start treatment with Thalidomide, and until I found this site I did not know that it had the potential to cause weight gain. Since being diagnosed in Sept. 2002 I have had chemo and radiation. Now my bone marrow biopsy's are showing and increase in the % of myeloma and my paraprotein is going up by 2-4 points per month--currently its 21. Apparently I am not suitable for a transplant, so Thalidomide is the drug of choice. How low is the lowest dose I can take and still have it be effective? What other types of side effects appart from constipation and weight gain can be expected? All help gratefully accepted!!

Hi Cath,
I have been on Thalidomide for a little over a year now. I didn’t have the radiation or chemo. I had a stemcell transplant (my own). I am taking 200 mg a day. That is four little pills. I don’t know what the minimum dosage would be, I suppose one pill. I also take a very heavy dose(20 mg) of Dexamethasone for four days each month and an infusion of Aridia once a month.
Side effects? Yes. I have not had anything serious. I did gain some weight but I found that if I watch my ‘carbs’ I can keep it from blowing up too bad. As far as constipation goes, I buy a product called ‘Swiss Kriss” at the drug store and take two tablets in the morning and two at night and two tablespoons of mineral oil before I go to bed and it helps a lot. I do have a little bit of neuropathy in just the tips of my fingers and a little in my toes, but it is not really that uncomfortable. I can still beat the heck out of a computer keyboard.
One thing that took me a while to figure out. I was completely worthless in the mornings after I took the pills. I seemed like I was in a daze. By afternoon, I was back to normal. I started taking the pills about 7:30 or 8:00 instead of just before bed. I start getting pretty sleepy about news time, but it seems to have worn off by time to get up and get started.
I hope this helps you. There is a lot of research going on concerning MM and a lot of things have been developed to keep it at bay. I am looking for great things in the future. Go on Google and look up Myeloma and see all the sites that pop up. Another possibility is a fairly new drug called Velcade. I am not familiar with the product because it has just passed the FDA in the past year, and the Thalidomide and Dex are working for me, but down the road, I may have a look

Thanks for your comprehensive reply Jim -- I will certainly take care about the timing of the pills as the MM already makes me extremely tired and I have to nap most afternoons! Unfortunately I'm not able to have a transplant and have had seriously bad side effects from dexamethsone so I will be taking the thalidomide on its own starting at 50mg per day and working up to 200. I've read about Velcade and it certainly sounds like a wonder drug for MM. I'm trying to investigate whether or not it is available here in Australia yet. Thanks again for all your help. Cath

Hi Again Cath,
I forgot another thing until I started to take my pills tonight. When I told my doctor about the numbness in my fingers, he prescribed a 2 mg dose of Warfarin a day and it seems to help. You might want to start earlier and maybe avoid any numbness.

Also, when I started Thalidomide the doctor said that the suggested start was one pill for 3 or 4 days then two for several days then three and so on. I got up to four pills pretty fast but it made me feel so bad that I quit. I called the doctor and he told me to listen to my instinct.(I like this guy. He says that medicine is a lot of times guess work and do what is best for you.) I started again and took one pill for two weeks then added another for a week and then three pills for a couple of weeks and finally got up to four and it worked a lot better. Hope you are feeling better. I try to keep a real positive attitude about everything including the MM and it makes me feel better, and I don’t worry about those that think I am being flippant. I have a disease that is incurable and is always (so far) fatal—sounds like LIFE to me. Illegitimi Non Carborundum. Very rough transition "Don't let the bastards grind you down".

My husband was diagnosed with MM about a year ago. He started with Thalidomide (5 pills) and Dexamethasone but unfortunately it didn't work. He experperienced pretty serious neuropathy and was taken off the medication. I believe he should have notified his doctor earlier when the neuropathy started. He started Velcade about 2 months ago and that is showing some promise. Some times it leaves him so anemic he has to skip a treatment until his blood cell count is better. Unfortunately, the neuropathy continues so they have stopped the treatment to attend to the neuropathy. He's now just started taking Gabapentin (Neuontin). He did gain weight ( 20 lbs.), even while excercising and watching what he ate.

Good luck to you and I would advise you to talk to your doctor if you notice any side effects.

Hi Jim--

Thanks for getting back so quickly. I'm getting into the cyber world of MM and have now added my 'survivor story' to the MM site at http://mm.acor.org/ as well as talking to you on this site. I went to Melbourne yesterday and am now on high dose Provera -- but I'm going with your advice and starting at 50 rather than just jumping in at 200. Next Thursday I'm due to start the Thalidomide and will be doing the same thing -- 50 every second day and gradually build up. I do not want to loose the mobility of my fingers as I've just taken up Origami and am really enjoying it!! Anyhow, thanks again for your advice and support -- I am very grateful!!

Stay fit and healthy and listen to your inner voices!!
Cath

Just curious how that thalidomide is going for you. My father has been offered this drug for liver cancer. We're getting as much info as we can for him.

Are you experiencing positive effects?

Hi Jill,

I went on to the Thalidomide for about a week, then I was accepted into a trial for Velcade. As it is part of a research process, I have to go off all medication for 3-4 weeks before starting the Velcade, so I've stopped it for now. The only side effect I had in the short time I was on the drug was constipation. If the Velcade doesn't work for me I will probably go back on the Thalidomide and try again. Best wishes to you and your family -- I've been really blessed by the response that others have given to me and feel that this venue is the best for gaining info about treatments and how others are faring. Unfortunately (or not) we are all individuals and responses vary greatly, but its good to know what might happen and what to look for!

Cath

my wife has multiple myloma which when it struck attacked her kidney`s with the bye products of protien and calcium she couldn`t have any of the normal treatments and still cant,but thanks to the thalidomide she is in remision we dont know how long for its a stand of with the side effects of the thalidomide.she has been on it for about 8 months she has hyper sesitivity,a sort of numness in her toes/feet lower leg. Her eyws are blood shot and itchin like conjuctavitis it isn`t,she has put lots of weight on that isnt going away. She also has cramps and muscle ache.Does any one know how long she can keep taking the thalidomide and how far the side effects go,we know we cant do anything about it but knoledge helps to prepare to cope with it all a little better we know its a stand off can anyone else who has gone further guide us many thanks.