[roofitzParticipant]

Hi I am desperate to get some advice over treatment.  My father was diagnosed last April and started treatment with intravenous chemo which did seem to work but then reached its limit. Tail end of last year he’s been taking dexamethadone and his protein levels down from 30 to 14.  The consultant is pleased and wants to try a 3 prong attack which means adding thalidimide and cyclophosphamide. My father turned down this end of last year as he was concerned on the consent form about side effects and remembers all the bad press over thalidimide 30 years ago.  The consultant said if you look on back of aspirin packet there are loads of side effects so it doesn’t mean you will have them. And he has the combination is widely used and results good.  My father who’s in his 80s and pretty fit for his age is currently getting good quality of life on current meds and is independent and can drive, shop go out etc so he’s worried having the combination drugs may ruin this.  It would be really helpful if there are other older people on this combination as to what they feel about it.  Any advice is greatly appreciated.

 

 

[graemeandrewarthaParticipant]

Hi, I  went on the same additional drugs with no ill effects and I am 67.

Your dad needs to remember that it was the pregnant women that had the problems with thalidomide not the men.

He will, if same as my wife and I, get a “safe  sex” lecture because of what it can do to women who get pregnant. At 67 & 66 it raised a smile with us all!!!!!!

Look on any sheet for any pill and there is a host of possible side effects. His consultant knows best and thalidomide has been known to help in the treatment of Myeloma.

All the best

Graeme

[roofitzParticipant]

Thanks Graeme for the reply.  His consultant was trying to be diplomatic and say this to dad.  I think the consent form put him off as so far he hasn’t had to sign anything so when he saw the side effects for thalidomide on there and the cycophosamide it worried him as he didn’t want his quality of life to go down from how it is now.  We go again mid march so will see how proteins are doing and discuss again taking the combination of drugs.  Like you say any meds will have side effect leaflets and not often you get them and we understand reason he is seen in hospital every four weeks is to check things ok.  Thanks again for taking time to reply.  Best wishes to you. Roo

[jillsParticipant]

Hi Roo,

Graeme is right about thalidomide, the problems were for pregnant women but because it is still a controlled drug the patient has to sign a consent form stating they are not of childbearing age! My Mum who is 85 has been on it with cyclophosphamide and dex tablets for nearly a year now, this is her fourth round of treatment since 2007 diagnosis and the second time she has had CTD. Side effects from the thalidomide and cyclo are not too bad for her, it was the dex which gave her more problems and she is now on a lower dose of that as a result.
The combination certainly does work better than a single drug and Mum got to a plateau which meant no drugs for a while which was great for her. Unfortunately as you know MM always comes back but the aim with someone older is to keep it under control without having too much affect on quality of life.
All the best to you and your Dad.

Jill

[roofitzParticipant]

Thanks Jill for taking the time to email me.  My sted dad did have a turn on taking dex in January and he felt really unwell and very down so he stopped taking the third dose and when he went in Jan told doc what he had done and at this point his protein was 21. They halved his dose and he started them again and seemed ok and when we went last week the protein had gone down to 14 so seemed to be doing ok and that’s when his consultant said if we doing well  with dex just think how well we might do on the ctd combined therapy. A few of the family like me think it’s worth pursuing but dad and a few others are thinking with the dex pushing protein levels down and he is feeling well and got good quality of life then why try extra drugs that may make him I’ll and unable to do things though consultant said he may not get many or any side effects.  I shall talk to dad again and see what he wants to do.  It’s so difficult as we just want the best for him.   Like so many others it’s a written disease and unfortunately no cure.  Thanks again and best wishes to you and your mum.

Kind regards Roo

[andygParticipant]

Hi Roo.

I’ve been on thalidomide and and thalidomide based chemo since October 2011 with varying side effects. Mainly tiredness. Cyclophosamide is the one that caused me most problems with nausea, lack of concentration, effecting my appetite etc.  I’ve been on full strength treatment since diagnosis so have been open to all the side effects.

Your dad has legitimate worries about side effects though given his age he will be given reduced doses of everything and if anything starts to cause problems it will be stopped or reduced further. Quality of life is a big consideration in the treatment of myeloma due to its incurable nature. There’s not point being drugged up if the drugs cause more problems than the disease. Younger, fitter patients get everything thrown at them but even those have to have treatment scaled back at times. I wouldn’t recommend your dad playing around with his treatment plan himself ie. stopping Dex (the devil drug) without consulting the medics first as that can cause problems sometimes.

At the end of the day it’s your dad’s life and only he can say if he’ll take the treatments or not the docs will totally understand his dilemma and should be able to reassure him that the treatment should be ok but if it causes more problems than its worth they will reduce dosages or stop some drugs altogether. Quality of life will be the main aim.

Hope this helps a bit.

Every day is a gift.

Andy

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