[helen78Participant]

Hi,

Well first, I want to say how absolutely fabulous it is to have these forums. Up until six weeks ago I knew very little about Myeloma. But my uncle – who is very very dear to me – has been suddenly diagnosed. I am trying to teach myself as much as possible so we can give him the best possible chance and these forums have been a great help. So thank you to all of you.

So, my dear uncle started his chemo (Thalidomide) two weeks ago and unfortunately he has had very severe side affects. He was still very fit and healthy when he was diagnosed – so much so he walked up one of UK’s most popular mountains – but suddenly the Thalidamide he is taking has rendered him bed bound and in hospital. In short he is having the worst back pain imagineable, terrible red/purple rashes, short of breathe, wheezing when he breaths and a possible blood clot. I suppose I just want to know is this normal? Did many of you suffer such severe side affects during the first stage of chemo? Is this to be expected?

We’re very worried that the side affects will bring problems of their own and will he have the strength to fight all of it? Should he continue with Thalidomide even?

It seems a very confusing stage right now because we’re learning about a new disease but we don’t want to miss a thing because we want to be on top of his treatment and try to get the best.

Can you please give me some light on how some of you coped with the first experience of Thalidomide? And how good you think it is?

Many thanks in advance

[graemeandrewarthaParticipant]

Hi Helen.  Sorry to hear about your uncle and his problems. I started chemo and steroids going on to thalidomide after the first month. I have been lucky with no after affects from anything so it seems strange that he has been affected so quickly.  I am sure the hospital will find out what it is that your uncle is having a problem with, possibly a reaction to a combination of pills.

There maybe others on this forum who can give you more information on this problem but stay positive and I am sure with your help your uncle will get past this unfortunate problem.

Regards

Graeme

[CarolsymonsParticipant]

Hi Helen
Thalidomide made me dopey and dizzy if I got up through the night and also caused neuropathy in my toes. I was on warfarin as blood clots can be a side effect of thalidomide. Was your uncle on any sort of blood thinners? Is he taking other meds as well? The initial therapy I was given was cyclophosphamide, dexamethasone and thalidomide (CDT) and I was quite ill from the drugs by the end of the 6th cycle.

Carol

[helen78Participant]

Many thanks for your replies, much appreciated.

Yes, the doctors seem to be covering everything but I want to be sure they/we don’t miss anything. Thanks again

[finnParticipant]

Hi Helen

Sorry to hear about your uncle’s problems. All I can add to the previous messages is that I got the worst back pain imaginable after the first rounds of chemo. Those rounds reduced the paraproteins (and therefore the myeloma cells) a lot, and during the next chemo rounds I did not get a bad back pain and the PP numbers did not go down either. So I have always thought that pain after chemo is a good sign. That does not explain the other symptoms though so I hope the doctors have found out what is causing them. Maybe an allergic reaction to Thalidomide?

[mhnevillParticipant]

Hi Helen

Just to put another view! I was on CDT for six rounds. It wasn’t easy as I had a metallic taste that meant I only fancied strong flavoured food, my hair thinned, zi got shingles and spent one week in hospital with sickness, but having said that, I didn’t really find it too hard to cope with. It got me into complete remission in which I remain nearly two years later and no SCT. I am now 69 yrs and just on 4 years post diagnosis.

They can reduce the dose of thalidomide to lessen side effects. I always think it helped the success of my treatment.

Best wishes to your uncle and to you as you support him.

Knowing as much as possible about treatment options is helpful so that your uncle can be a partner in the decisions made about him.

Mavis

[delsey33Participant]

Hi Helen

my mum is just about to start her 3rd cycle of CDT.  She was on 50mg of thalidomide for the first month and although she was feeling dizzy she managed well. For the 2nd month the thalidomide was increased to 100mg and after only 1 week she was bed ridden and couldn’t do do anything for herself and was taken to hospital where it was agreed to lower the thalidomide back to 50mg. Within days she was back to how she was. We also got the results of her para protein levels.  They had decreased from 44 to 21.  We are hopeful that even on the lower dose the levels will keep decreasing as a higher dose isn’t an option for her.

Serena

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