Multiple Myeloma treatment

Hi,

My dad has just been diagnosed & we've been told he will be on a 21 day Velcade chemo cycle for the rest of his life.

Has anyone been in this position?

I've never known for a chemotherapy treatment to be that ongoing?

  • Hi Ems,

    Welcome to the site although really sorry to read about your Dad.

    In myeloma, it is not that unusual to be on continuous treatment (it is known as maintenance treatment). It has been proven to be one of the best ways to keep myeloma at bay for the longest.

    Feel free to come and join us in the myeloma part of the forum if you like. There are loads of lovely people who’ll be able to share experiences, answer questions, etc.

    All the best,

    Greg

  • I wasn't there when the treatment schedule was given, so I'm without a lot of info, but my mum seems to think he will be on a rolling 3 week cycle, permanently?

    I don't see how the body will withstand that amount of chemo without recovery time?

  • Hi Ems,

    I think it is basically given at a lower dosage - so not as many intense side effects.

    Hope this helps,

    Greg

  • I agree with all of the comments so far. My wife has been treated with two kinds of chemo, neither of which had positive results before being prescribed Lenolidamide- a thalidomide derived chemo. whch seems to suit her. She has monthly meetings with the consultant and is now starting her 44th monthly course of this chemo which she takes at home and is technically in partial remission. As it seems to be keeping the MM in check, her dosage has been reduced by 50% which is entirely good news. But I think it's clear that until a cure is found for MM, my wife will be on some kind of chemo for the rest of her life. Her remission is partial and that's great and is, in the present state of MM therapies, as good as it's going to get. But we've been on this journey for over 7 years and things are so much better than seemed possible when we were first shattered by learning about her diagnosis.

  • Dickielex this is good news to read. My mum has been through chemo twice already and SCT since being diagnosed 5 years ago and has now just started on Thenalidomide indefinitely. I thought it was bad news but it’s good to hear that your wife has been coping well on it and it’s something positive I can feedback to my mum. The only complication with her is that she also has a stoma and her kidneys are only at 8% so still worried what more chemo means for that.

    Has your wife had many side effects at all?

  • Dear Clare,   Lenalidomide is a immunomodulatory agent and an antiangiogenic agent, I have been taking it at the lowest dosage for several months as I have dialysis dependant kidney failure. I don’t suffer from any major side effects, those mainly come from the steroids that are prescribed along side. 

  • Hi Jane,

    thanks for your message. That’s really good, mum has started to get shortness of breath and dry mouth but not sure if that’s the steroids? The dry mouth thing is strange as it makes her tongue sort of move to the side of her mouth and she talks differently. Nothing seems to improve it no matter what she eats or drinks. She thinks she steroids sort of make her tummy hard, which is uncomfortable. 
    Have you noticed any difference in your hair at all? She’s wondering if it will go thin again but hoping she doesn’t lose it like she did with SCT. 
    thanks

    Clare