[Lara1Participant]

Dear all,

I am new to this blog and I am here for my father who has recently been diagnosed with multiple myeloma. My father just started his therapy (two days ago) with thalidomide (MYRIN) and although the first day seemed that his reaction to it was very mild, today he felt very weak, had nausea… I know that it is quite early in the process and I read some of your older posts but I am wondering could you recommend anything that is able to offset a bit the side effects of the thalidomide. I know taking a lots of liquid is good. The additional problem with my dad is that he has a diabetes type II. Any information is welcome,
Thank you,
Lara

[brochoParticipant]

Hi Lara welcome to our site there are lots of people on here only too happy to offer you support and we have a range of experiences from patients to carers, those like your dad just starting treatment and people like me who were diagnosed some time ago , 5 years in my case. I havent been on thalidomide myselfbut I know from others that the best time to take it is very last thing at night Get your dad to tell the nurses about any side-effects , however small as there is usually a solution For nausea there are several drugs to help with it Feeling weak and tired is par for the course during the early days so really the best thing is to rest when your body tells you it needs it Any chores can wait for another day , resting is part of the healing process it doesnt last forever although fatigue is common for all of us you just get used to it Have you had a chat with your dads specialist nurse? He or she would be the best person for advice on how you can help your dad cope Best wishes to you and your dad please let us know how he is getting on Bridget

[eveParticipant]

Hi Lara
Just read your post ,do not know how i missed it,!!!!!
Let me welcome you to this site,and the start of your fathers journey!! it,s not all doom and gloom,treat it like a learning curve.:-)
I cannot help you with your problem,but by replying to your post it will take it back up to the top of the section,and someone who can answer your question might see it.( does that make sense ):-P
If you do not get an answer to your question,try e mailing Ellain,I have gone through her,when no one has the answer!!!!
My best wishers to your Dad,It will get easier.Eve

[MinParticipant]

Hi Laura,
You must feel abandoned not hearing from us, sorry I missed your post.
As a few days have passed since you posted I imagine your Dad has passed the first hurdle with his medication and the dex effect has settled down a bit.
It takes a while when you 1st start Thalidomide to reach a comfortable level and as your Dad responds to All the medications he will start to feel well. Ivan who is as new to it as your Dad is probably at the same stage as your Dad and in a better place to help him…. Compare notes with how he is coping its always good to know how someone else is doing. But be aware that everyone is different in there responses as the MM may be more or less advanced in each case, with more or less related problems like kidney or bone damage.
How old is your Dad? where is he getting his treatment. someone on here will probably be attending the same unit, be able to offer advice and just understand where he is coming from.
Best wishes to him
MIn

[BADGERParticipant]

hello Lara
sorry to have missed your post sorry to hear about your dad just to tell you I am type 11 diabetic so while on the CDT I had to have insulin as the steriod raised my sugar levels to an unacceptable level I hated this but did not have a choice just to say when I finished the treatment I was able to go back to tablets so you dad should be ok it seems with the thalidomide its grin and bare it if you can its best taken at night it helps you sleep a bit better
Love Jo

[gina45Participant]

Sorry we missed your post Lara. Its my mum that has myeloma and its hard to see someone you love go through this disease. I cant really help with your question but i know there are lots of lovely people on here that will be able to give you some good advice.
I just want to say hello and will be thinking about you and your dad
Gina xx

[CarolBradley1Participant]

Hi Laura

Sorry you have joined us – I`m sure you must be so worried about your Dad. I didn`t have thalidomid but other chemos give similar side effects and they gave me some smashing tablets that really helped with the sickness – please do ask for them. As mentioned already I too found that taking the chemo at night helped a lot.

Take care of yourself as well as your Dad
Best wishes
Carol xxxx

[Lara1Participant]

Thank you all for your kind comments and advices. It really means a lot to me. My dad feels a bit better in the third week of therapy after the adjustments of transfusion quantity and after the body just got a bit used to it and to thalidomide, I guess. The main problem was the sugar level after the steroids kicked in, but hopefully he will get used to it too. For now he tries to control it as much as he can naturally ( as he did before therapy), walking a lot after the meals, etc. He still feels a lot of back pain though. He also take his pills at night. Thank you all again,

Best wishes for everyone,

lara

[Gill20Participant]

Hi Lara,

Welcome to the site, I hope by now your father is feeling much better. I am in my second cycle of treatment of CDT so probably the same as your father. I found that the first week was the worst, I think it is our bodies just getting used to the onslaught of all the drugs. The first week we have everything the chemo, steroids and the thalidamide plus all the other drugs and the Zometra (biphosponates drip) that made me ill for a couple of days. I was given anti-sickness tablets to take on chemo days and the day after and they do help, I have also got anti-sickness tablets to take any time I need them so he needs to make sure he has these. I think he will find that he will have good days and bad days. I have found that I feel bad on a Sunday and Monday after I take the chemo on Friday but then I am OK. In fact 4 1/2 weeks into treatment and I will say when I have my good days I feel better than I have for years, my bone pain and tiredness have decreased and I can think clearer. I do get some problems with my eyes not focusing properly, I think that is the steroids but I can cope with that. I have a second Zometra drip and felt fine afterwards, they did say that it would only be the first that makes you ill and they were right.

I hope this helps put your mind at rest, he will start to feel better soon and he will get to know when his good and bad days are and he will be able to plan his days accordingly. I know that I do not arrange meetings at work on Mondays or try and do important jobs, I save those for the rest of the week.

Keep us informed of his progress and don't worry too much he is having the best treatment.

Gill

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