Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hello. I have only posted one comment on here since my diagnosis back in February. I thought I was managing things ok and dealing with the drug regime. But I’m afraid I feel I’ve hit a brick wall and I’m struggling. I don’t like feeling sorry for myself as usually I’m pretty strong. I am not that good at reaching out to people either but I think just posting this may help me. Really struggling with fatigue as the hospital have just upped my thalidomide and I am having pain in my hip. Hopefully this feeling will pass. Thank you for listening.
I’m really sorry to read that you’re struggling at the moment, but I am glad you’ve reached out as everyone on here will have felt how you’re feeling now at some point, so will understand how you’re feeling and hopefully will be able to help.
Personally, I didn’t have thalidomide so can’t comment on that, but if you are having steroids (I had dex), then in my experience, they can cause really significant crashes in energy. I would definitely mention it to your team though if it is getting too much, as they can tweak doses to try and make things better.
How are things going with your myeloma markers? I always said to myself that I could put up with drug side effects if the drugs were doing what they’re supposed to do, so I’m really hoping you are seeing some positive results.
All the best
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Thank you for your reply. It really helps knowing I can gain support from Macmillan Community.
I am on Dex every other week for four days so perhaps the combination of coming down from the steroids and increase in the Thalidomide had a huge effect on me last Saturday. I will definitely see how I fair with taking the 200mg Thalidomide. As of today it’s not brilliant but the hospital said it will take a little time for my body to adjust to the increased dose.
Regarding my paraprotein levels they reduced dramatically at first but now seem to be petering I have numerous tests tomorrow to ascertain my fitness for SCT alongside the main oncologist at Southampton.
Thank you again for giving me the opportunity to vent and share my concerns.
That’s what this site is for so please feel free to use it whenever you need it. I hope your tests and meetings go well tomorrow, and please pop back to let us know how you are getting on. The SCT can be daunting but there is lots of experience of those on here, or conversely if you go down another route, I know there are lots of people on here with experience of that too.
Wishing you all the very best
I am on thalidomide, velcade & dex, the day of injection & the next day, 5 tablets each day.
I have pain in my hips & down my thigh. Told it is the velcade. Taking codeine & paracetamol.
I relate to struggling at times. Enough to deal with, without pain or other side effects from the drugs.
With fatigue I tend to have to sleep, I try to walk & do lots of small tasks each day.
Some days I get up & if really out of sorts I will go back to bed for a sleep, usually feel ok then.
At least it is good that others have similar symptoms!
I was diagnosed August 2018 after suffering with exhaustion and bone pain for months. Fractured a bone in my neck July 2018 and after loads of tests MRI. CT scan and bone marrow biopsy finally told I had Myeloma. Had seven months of chemo including weekly velcade injections and four days per month of Marphalan and prednisolone tablets. Also monthly infusions of zometa. Felt so fatigued and poorly felt as though I couldn't carry on. No quality of life at all. I couldn't do anything. I was so breathless. Six weeks ago Consultant said I had reached partial remission and could have a few weeks off treatment. Still breathless and just had a heart scan. No results yet. Feeling slightly better now. See Consultant again in August. Presumably I will need more chemo in the future. I am 76 years old and really hoped for a healthy retirement. Hope you progress well. Everyone is so different.
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