[amandaParticipant]

I am just about to start a course of about 9 weeks of double dose of velcade with Dexomin and thalidomide.  Has anyone been on this.  This is supposed to increase the destruction of the myeloma ready to start the harvesting of my Stem Cells.  I will then be going on Mepthalan before I go into the SCT.  I just wondered if anyone else has been on this regime and what happened to them along the way.  It is all very daunting but I am fairly relaxed and hopeful , cant be anything else to be honest as I feel fighting is the best option with being positive and cheerful all the time.All my friends and family are amazed how well I have taken everything that has been thrown at me and not once broken down.  Not point in feeling sorry for ourselves we just have to pick ourselves and move and hope that we come through it and feel well.  I have felt very well all the time , even on the last course of velcade , just hope that this next bout keeps me feeling the same.  I have kidney faitlure due to the myeloma, it hasn’t gone to my bones.  I have dialysis every other day but at least I get monitored every other day and blood test regularly so I am on top of any annemia or blood levels dropping , all these things are treated and acted upon , so I do feel pretty lucky.  Hope that all my fellow myeloma buddies are all keeping well and look forward to receiving any information that you can give me.  Amanda Hart.

[faithParticipant]

Hi Amanda, I was on Thalidomide for 12 weeks prior to my stem cell transplant. I must admit that I didn’t feel too good on it I felt like an old woman I was only in my late 50’s but I am still here which is the main thing! Few problems with my hands and feet now they are a bit sensitive I often drop things because I can’t feel them. But be positive. Janet X

[CarolsymonsParticipant]

I had thalidomide with cyclophosphamide and dexamethasone for my initial therapy and after 18 weeks I was really suffering with the many side effects. Dizziness, muscle weakness, constipation, neuropathy (which I still have) leg cramps, night sweats and night time incontinence. In fact I think the initial therapy was worse for me than the SCT!

Carol

[amandaParticipant]

Carol and Janet.  thank you for your replies all information helps.  I have started to feel like an old woman to that is the best way to describe it seeing as I am a very active fit woman of 56 , I actually feeling like 76 at the moment.  My muscles are weak , I am trembling and shaking, have dizziness and constipation.  This is all due to the thalidomide as I was perfect on just the velcade last year.  I don’t suppose they decided to take you off it if your side effects were bad.  Seems like we have to take what the poor body is trying to put up with.  good luck to you both . Amanda.

[CarolsymonsParticipant]

Amanda I remember that feeling. Some nights I would have to sit for ages on the side of my bed before daring to stand up as I was so dizzy, not to mention weak. And I was also a very fit, healthy 63 year old before starting that treatment. But….after a few weeks off the drugs I did start to improve except that I still have some neuropathy (just numbness) in my toes. The combination of cyclophosphamide, thalidomide and dexamethasone did beat my para proteins down to undetectable though, so I guess it was worth the suffering.

Carol

[faithParticipant]

I also felt like a very old lady while on treatment. I had/have the same side effects as you Carol numb toes as well as finger tips.

Janet X

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