[VickiParticipant]

Hi Jean

Have read your posts and I feel for you…..and know how you feel. These strong willed men eh? It is so hard to know what to do for the best. I worry day in day out and when the treatments are delayed I worry even more. I hope you and hubby get the best treatment whatever that turns out to be. The thing that makes me cross is that sometimes drug availability comes down to money and like others randomisation does seem very unfair,but then so is mm!

Keep your chins up both…..there's a few weeks football for hubby to look forward to. As for you as everyone keeps telling me look after yourself too. If I can help with any questions please ask although no expert.to date Colin has had the muzzy head, dizzy, metallic taste in mouth, bit grumpy but so far nothing he can't handle (unless he is not saying!)

Best wishes Vicki 🙂

[jmsmythParticipant]

Thanks Vicki

I really appreciate all the support this forum gives. I feel a bit more positive as I told Frank what David had said about PN a d he is asking some questions. Which is a start. Dreading tomorrow but I know what you mean about the worry. Good job I like football as well. It has only started and one of my daughters in law says its doing her head in.

Thanks agin

Love Jean x

[wendyduffieldParticipant]

Hi Jean

I had horrendous problems on thalidomide in my first cycle after about day 14 when the Consultant told me to up the dose from 100 to 200 mg. I got a horrendous skin rash, fainted a couple of times, was shakey and had nerve damage,not in my feet and hands but in my back and head. It was stopped for about 4 weeks unti I recovered from the skin rash, then I went back on it at the lower dose but still had this nerve problem, the shakiness. I was probably a nuisance to my specialist nurse ringing up most days with complaints and in the end my consultant told me to stop taking it and they came up with an alternative which included Velcade. That I was able to tolerate a little better but they are all horribly toxic drugs and it is a balancing act. I am not sure I agree or even my doctor agrees with the whatever it takes approach if the side effects are too awful.
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I would think that as a first response they may decide on a reduction to the dose as you dont mention what dose he is on rather than switch straightaway to something else. I hope it goes ok tomorrow.

Wendy

[jmsmythParticipant]

Hi Wendy

Thanks for your very informative reply. Frank is only on 100mg of Thalidomide and had this bad reaction, I would hate to see what he is like if he was on 200mg!! We will see what happens tomorrow but I hope they reduce the doseage and then increase it gradually. My concern Wendy is that Frank has a history of drug intolerance and I just pray that this does not manifest itself at this crucial time. He is not sleeping but his form is good. Frank is one of these people that is always in control and this feeling that Thalidomide brought on, I think scared him.

Thanks again and will let you know what happens tomorrow

Love Jean x

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