Just about to start 16 weeks Dara-VRD chemo treatment

Hi Roo.. it's Sue here .Nice to meet you even though you prob never wanted to find yourself on this chat group .

I have Myeloma and went through the DARA DVD routine in Sept 2022 . I see you have an R not a V so not sure about that ? First thing is everyone of is is different and reacts individually to treatment . I wish I had been told not to expect too much of myself ! I'm a carer by profession and in the family and I really assumed I would sail through the treatment without a hiccup. It takes time to get used to the medication routine ! My kitchen turned into a pharmacy counter . My husband started a spreadsheet to keep track of things meds and apts for the first few weeks. It helped .Also  getting into a routine with all the hosp apts helped and getting to know the hosp . My advise would be to be alert to side effects of the routine and please speak with your care team about them .They may be able help and offer reassurance. At this stage I don't think it's helpful to talk about side effects as you may never experienced the ones I had . It's alot of appointments but you will get there , accept help from those around you and be kind to yourself.  I also found keeping in touch with your support network important .It stopped them wondering and making assumptions that were maybe worse than the reality x 

PS should have said I had a Stem Cell Transplant April 2023 . I'm now in remission and looking forward to my 70th birthday next year .Treatnent is worth it ! Sue 

Hi Roo.   I have. M. M.  And line cake in Remission. We are all different but I had 4 cycles of DVTD.     injection in day care and tablets at home.    Blood tests every week to monitor results.    It’s like a slow hammer knocking it on the head.     Then stem cell harvest and stem cell transplant.      Easy to say but don’t be fearful the results are worth it!        The support of a carer is important as you will have good days and bad.   I pretty much drive to all of my appointments about 30 minutes each way      The most common side effects are managed with medication.       Rest when you can.   Fatigue is a demand on your body.   Don’t fight it.   Rest !        Kevin.   Best wishes. 

Hi Roo. Welcome to the forum.

The chemo combination which you mention is pretty normal (although some get Thalidomide instead of Revlimid = Lenalidomide).

That is what I had in the first half of 2023 after being diagnosed at the end of 2022. Still in remission, although I get Daratumumab injections every 4 weeks to help keep me in remission. 

You mention 16 weeks of chemo. That is called the 'induction' phase. As you are relatively young and in good shape otherwise, the standard treatment after that would be a stem cell transplant and another 8 weeks of chemo (the 'consolidation' phase).

If you were not in good shape, the stem cell transplant would generally be skipped (which is what happened to me).

Happy to take you through any of this, explain jargon etc.

Thanks for this - very helpful and thankfully my wife is a spreadsheet goddess! Really appreciate the feedback.

Thanks for this and that's very useful feedback.  I'll reach out as I go. 

Thanks Kevin that's really useful and some great advice.  I am lucky to have an amazing support network around me.  I'll keep you posted next week after round 1 of treatment. I think after these 4 cycles (like you) I will have stem cell harvest but haven't got to that discussion yet. Its a journey.....

Hello Roo

I had all the injections and meds, finished two months ago and  now I have to continue with all the meds and injections as I have Kappa free light chain mm.  I came though it all even though I am 82 and have kidney problems.  I drink plenty of water to keep the kidneys ok.  I didnt have stem cell transplant but at my age that could be expected.

I feel pretty good at the moment, not my usual busy self but fairly ok.

Just accept what your body tells you.  If you are tired then sleep.  You will get side effect but they will clear up.

Please be aware that your immune system is very low and you will be subject to infection if you are not careful.

Good luck and take care.

All the very best.

Great to know and thanks for the advice. Much appreciated. I’ll go with the flow and do what my body tells me to! Cheers. Roo

Hi Kevin. Did your immune system take a knock and how did you deal with that in terms of interaction with others. I have an office and employ 500 people so if I feel well enough plan to be there. But maybe that’s being very naive. Any views on this?