[finnParticipant]

Great post Mike, very funny. Thanks for sharing your journey. Hope you stay in remission for another 7 years at least.

[finnParticipant]

Hi Ian

I used to get cramps in my fingers and legs when on dex! I thought it was water retention caused by steroids. Anyway the cramps disappeared when I stopped taking dex. Best

[finnParticipant]

Hi Frances

Sorry your mum is feeling poorly. Does she feel dizzy when getting up from bed? Just wondering if the blood pressure medicines are lowering her blood pressure too much. Hope she finds out soon what is causing the problems.

 

[finnParticipant]

Hi Sue

When I was on Rev the doctors warned about two things: allergic reactions and blood clots. Have they ruled out these in your husband’s case? Hope it all gets sorted out soon.

 

[finnParticipant]

After my transplant I was on acyclovir only, no antibiotics unless I got a temperature. Apparently I should take antivirals for about a year.  Flying was allowed 6 months post SCT, at least in Europe.

[finnParticipant]

Hi Mandy

I am so sorry to hear your news. I am also very surprised your consultant has put a time frame on your disease progression, especially as new drugs are developed all the time. Anyway, have you thought about going on maintenance first, give the drugs a chance to keep the myeloma away. This may take a long time as there are lots of drugs to try. Only when the drugs are failing you could still do the double transplant. Just something to think about, of course it it your decision and you will do what feels more comfortable to you. Best of luck

[finnParticipant]

Hi Jane

Are you going to have another SCT? If so, and if Velcade is not lowering the PPs anymore, why are they continuing with it? Maybe your doctor has a good reason to keep you on Velcade, can you ask him? My doctor told me that they will stop using it as soon as PN becomes too painful.

[finnParticipant]

Hiya

I was told by a number of people that Velcade is a wonder drug, and I was very disappointed when it did not work that well for me! After 5 cycles my doctor changed it to lenalidomide, which reduced the PPs very nicely. Luckily there are many drugs to try even if one doesn’t work!

[finnParticipant]

Hi Scott

Your shoulder pain sounds very familiar; I have had similar pains in my shoulders since SCT last December. I have also had pains in my arms, legs, hip, you name it. I have not had Zometa since SCT so maybe the pains are just the bones and joints recovering from the damage caused by mephalan?

[finnParticipant]

Hi Myelomaminx

Sorry to hear that you were unlucky with stem cell harvest. Just to clarify that Plerixafor is used to help move stem cells from the bone, where they are produced, to the bloodstream, so that they can be collected. You may have produced some stem cells after growth factor injections but none were released to blood (and therefore found in a blood sample). They could have at least tried Plerixafor injections. The drug can be used for several days. It is expensive though.

Better luck next time!

 

 

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