Newbie

Hi Solero and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.

I don’t have Myeloma but I have been on a 22 year journey with a completely different rare blood cancer but just wanted to drop in past and help as best as I can.

Finding the best Anti-nausea meds is often trial and error, I do hope that your team can get this right for you.

We have a site search  tool near the top so if you put the words Velcade, Daratumumab, Thalidomide and Dex into separate searches then select ‘Anywhere’ you will pick up all the older posts…… and having had a quick look there are a good few posts.

As always you can hit reply to any of the old posts and see if the members are still active on the site.

We have various support available through the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also find our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family. The centres also have monthly Heamatology Support groups.

Always around if you need further help in navigating the community or just to chat.

All the very best ((hugs))

I have multiple myeloma and am on my 5 cycle of VTD same as Solero except no Daratumumbah. I have no sickness so must be the Darawhatever. I am really struggling as each cycle seems to make me feel worse. My legs ache and I am very unsteady and my brain is mush. Would be good to hear from someone else who is also going through this to compare notes.

I have had myeloma for 4 years,vhaving been diagnosed incidentally as a result of going  to donate blood when I was 60.

I found the 5 cycles of induction treatment that I had (velcade, Revlimid & dexamethasone) gruelling.  I wasn't ill exactly but I was weak, felt dizzy & fatigued easily. I had word retrieval problems & definite brain fog.  The treatment entailed frequent hospital trips which dominated life.

I had a SCT 10 months after diagnosis.  It had felt a very scary prospect, but in reality for me was not too difficult.  Apart from diarrhoea, my main issue was exyreme fatigue & sciatica.  Within 40 days I felt quite a bit better (despite having had a virus) & at 60 days I was feeling better than I had since diagnosis.  On day 102 my husband went to Crete and hiked miles up & down gorges & mountains, we could scarcely believe what I could do.

Gradually over the past 3 years the brain fog has lifted and the word retrieval issues have resolved.  I still have a level of fatigue which I try to deny but by the evening I tend to run out of steam.  Since the SCT I've been able to do absolutely anything I want to do (COVID permitting) but not everything at the same time.  

I really hadn't anticipated being so well, in fact if I'd listened to the diagnosing haematologist, I wouldn't have thought I'd have still been alive. I feel like a fraudulent myeloma patient & long may this continue. I think this is the reality for many of us who can get through the first hurdle of diagnosis & into treatment. 

Thank you Mike

Thank you

I know exactly what you mean, I have now had my 5 chemo and am so so tired and unsteady. I get out of breath even washing up.

Hi Jane thank you for sharing this it’s given me loads of hope