[lej13Participant]

Hi, My dad has myeloma and is on thalidomide but his side effects have got so bad that he has had to stop all treatment for now. His legs are so weak that he can’t walk and the ‘pins and needles’ pain keeps him awake all night. He has collapsed a few times. We hoped that once he stopped taking thalidomide we would see an improvement in these symptoms, but that just hasn’t happened. It has been about 2-3 weeks since he came off it and there has been no improvement at all.  We are not getting any answers from the consultants as they just said “let’s wait and see what happens” but we are getting more and more worried.

So I thought I would ask people what their experiences have been. Has anyone found that once they stopped taking thalidomide the side effects started to decrease and if so how long did this take to happen? Equally are there people out there who found their side effects never really went away?

This cocktail of highly toxic drugs feels counterintuitive, but I guess the doctors know what they’re doing.

This is all quite new to us as my dad was only diagnosed in April and he is (was) a very fit and healthy 69 year old. We are just getting our heads around it all.

Anyway, thank-you for listening.

[susieParticipant]

Hello. I’m sorry you have had to join this forum, but welcome. You will find lots of knowledgeable folks on here.

Wasn’t on thalidomide myself, I am on the myeloma x1 trial and was randomised to Revlimid, so I can’t speak from experience. However everyone reacts in different ways, just as myeloma is a very individual disease.

I suggest you phone the information specialist nurses on Monday. They’re brilliant and so so helpful. I’m sure you will find them helpful.

Best wishes

susie

[tonyfParticipant]

Hi lej13, sorry to read that your dad is having problems with his treatment. I am on velcade, dexamethasone and thalidomide, I wonder if the pins and needles could be neuropathy, in which case you do need to talk to the consultant and have the dosage changed or the drugs changed for something which dad finds more acceptable. First thing Monday I would phone the myeloma nurse and talk it through with them.
Hope you can sort the problems out quickly and that your dad can get back to managing his life.
Hope the above helps
Regards
Tony F

[davidainsdaleParticipant]

Hi, sorry to hear that your dad is having problems with the medication. I would certainly agree with Tony that if you are worried then go and ask the experts, that is what they are there for.

I was on 6 cycles of dexi as part of CTD, 4 lots of 20 ( each 2 mg) three times each cycle – I remember eating them with Cheerios for breakfast. The two main side effects for me were fluid retention everywhere, just like Michelin man, and the muscle weakness your dad had, which combined with spinal damage meant i was fairly immobile for several months, I could just about manage 10 or 20 yards.

The muscle wasting seems to be a viscious circle, the less you do the worse it gets. As soon as you are up walking again, thing start to get better. There are some exercises you can do in a bed or a chair but again I think you need to take expert advice in case you do more harm than good.

I started to see an improvement a week or two after I stopped the CTD but if I am honest it was a couple months before I was able to walk any real distance of a mile or two.

Hope this helps and that you start to see some improvement.

David

[lej13Participant]

Thank-you so much for your replies Susie, Tony Farquharson and David Simister. It is very reassuring that there are people out there who know what we are going through and understand and have had similar experiences, and reply with helpful advice! David Simister, I’m so glad you saw an improvement and were able to walk distances again. That gave me some hope. And I wasn’t aware of the infoline so thank-you for drawing that to my attention. Dad still hasn’t seen any improvement so he managed to get an appointment with the specialist and is going through more tests and scans and different drug combos so at least they are paying attention now.

Thank-you again for your support. Good luck to you all. x

[bernardParticipant]

Hi

i had thalidomide and it caused me neuropathy which I still suffer from. However, I recently completed my first 18 holes on the golf course. There are meds for neuropathy so ask your consultant. The pins and needles and numb feet are still there but manageable.

Good luck.

[langdaleParticipant]

Its 4 weeks since I stopped taking thalidomide as part of dexamethasone, velcade 4weekly cycle of 4 weeks, which has been very successful in combating the disease. The peripheral neuropathy is much the same with pins and needles, numbness, loss of strength in lower legs. My GP prescribed amitriptyline and have been taking it for 3 weeks with no effect. Walking improves it but I wake up at night and spend ages changing my position in bed so losing sleep and getting tired. If anyone knows a way of improving this situation please respond.

[mervyn53Participant]

Hi

I had a lot of sleepless hours when I was on velcade, dexis etc. The thing that worked for me was a tea called ‘Snore and Peace’ made by the Clipper company.

Try it. Nothing to lose.

Good luck

Mervyn

[langdaleParticipant]

Thanks Mervyn, have ordered some online. I spoke to my GP today re the lack of effect of amitriptyline and his response was that there was nothing else available and this drug was very safe. he suggested doubling dose but the downside was the drowsiness. Decided to continue with the 10mg daily dose. regards dave

[bernardParticipant]

Dave. I have quite bad neuropathy in my feet caused mainly I’m told by the thalidomide. The muscle loss in my legs was due to the dex steroids. I tried pregabalin but had a major itching reaction to it so had to give that up. I have been using amitriptyline for about 2 months now. I finished chemo at the end of last year so I am further along than you. My legs have grown stronger with exercise (& no steroids) and I can now manage 18holes of golf I think due to the <span style=”line-height: 1.5;”>amitriptyline. I can’t be sure as my consultant said to me today that the only true way of knowing is to stop taking it and see what happens which I don’t fancy doing. I was on 10mg and then doubled to 20mg. Drowsiness is a side effect but I am no worse with 20 than I was with 10 but I actually find it helps my sleep if I take it a couple of hours before bed. It might be that the steroids are not fully out of your system yet so it may be countering the drowsiness from </span><span style=”line-height: 1.5;”>amitriptyline? </span>

What I have learnt is that you need to give these drugs time  give it a couple of months or so and see what happens then. After chemo I found it hard to stand up for longer than 5 minutes without pain. Now I am back playing golf for 18 holes and can just about do it  it takes time but keep at it.

Bernard

 

[langdaleParticipant]

Thanks Bernard, Played 18 holes on my hilly course 2 days ago but with a buggy but it gets me out. I took 2 x10mg amitriptyline tablets last night and no drowsiness today so I think you are right, it just needs time. regards David.

[bernardParticipant]

No harm in using a buggy David. The fact that you are out playing is great. Beats sitting in a hospital bed doesn’t it? It took me. A few months to build up to 18!hiles so take your time. Use the buggy, then after a while maybe try 6 holes walking, then 9 etc. That’s what I did. It was an objective of mine to get back out and now I’ve done it I feel great about it.

Keep on going, you’re doing great.

[christaylorParticipant]

Hello, Sorry to read about your Dad and that he has come off Thelidomide, due to the side effects.  The CDT treatment has proven to work very well, and yes you get the nasty side effects with these toxic drugs. When I was on CDT the Thelidomide dose was 100mg which I took late at night with Horlicks and a biscuit. I did get neuropathy in the fingers and toes, like tingling numbness.

But the major pain that I have had as been down to bone damage, the vertibrea damage caused serious pins and needles in the legs especially when I passed urine. And also meant I could not walk much. So can it be that your Dad is suffering with bone damage and it’s not the side effects of Thelidomide ?.  Has he had a full skeleton x-ray ?, to check for bone damage bearing in mind he stopped taking the Thelidomide .

Good Luck, Take Care.

CT

• This reply was modified 9 years, 2 months ago by  christaylor.

[kpParticipant]

Hi, I was on the VTD (Velcade, Thalidomide and Dex) and I think it was by the third cycle I was experiencing symptoms of peripheral neuropathy, particularly in my legs and feet. The Consultant reduced the dose of Thalidomide by 50% for the last three cycles so the symptoms did not get any worse.

I completed the six cycles in June and although I have had some gradual improvement the PN is still evident. A nurse said to me I could see gradual reduction of the symptoms up to a year but I think that like MM, PN is different for each individual.
I too would ring the info line, they are great.
Best wishes
Karen

[langdaleParticipant]

The peripheral neuropathy is improving with hands almost normal and feet much improved so getting much better sleep etc. I noticed my latest comments on this issue were 5th September so its about 4 months since I had my last thalidomide. I am booked in to Pinderfields Hospital at Wakefield for 1st December to commence SCT, doctors strike permitting . Sucking ice lollies is recommended so I wondered if the hospital provided these? Anyway off to Oxted in Surrey for our sons wedding this weekend so can worry about such things after then.

[Author]

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