[znabParticipant]

Thank you for your response Sarah.
I hear you about being left to just accept the side effects!
Thankfully, my skin has stopped peeling. It’s still very dry and the texture of my skin has changed – less elastic?!
I continue to moisturise and oil my skin (it’s from my face to feet – my very dry flaky scalp has returned to normal).
I’m currently in week 1 of cycle 2. I feel that my body is tolerating it better and I feel that I have better energy.
I think that skin issues are a normal side effect (from what other have said in other forums) but the doctors/nurses aren’t too aware of it?!??!?!
All the best,
Zainab

[znabParticipant]

Thank you – I haven’t started taking the curcumin yet, even though I’ve brought some! Takes me a while to get in to a routine.

[znabParticipant]

Hi Rabbit,

I was diagnosed in July 2022 and after a year off work I returned in September this year. I’m a teacher and I’ve found it really tough! I’ve had a phased return, thank God. Physically, I’m really tired at the end of the working day and grateful that I have days off in between. I’m getting stronger but am hoping to go part time as I think that would suit me best. Mentally it’s a struggle – just being back is hard work and being off for a year for treatment hasn’t been easy. Plus, its not over! I haven’t started my maintenance treatment but that might make me feel more tired.

I feel blessed to be back. Sometimes I think that I went back too soon, but I’m glad that I did it. I feel proud of myself.

I hope that it continues to go well for you.

Zainab

[znabParticipant]

Hi,
I am high risk and, after a successful induction, the myeloma acted aggressively and I had a lump form so I had to do a version of DT-Pace. That was successful and I was able to have a SCT in March this year. Blood tests and PET scan show that the SCT has been successful. I’ll find out about bone marrow biopsy next week.
Hope that helps. All the best!!!!
Zainab

[znabParticipant]

Thank you Mulberry 🙂

[znabParticipant]

Thanks Bernard,
Waiting to start the SCT – it was delayed as a I had the flu… hopefully I’ll start this Weds!

[znabParticipant]

Hi garhow55,

It’s the acronym for another line of treatment; VRD-PACE = Velcade, Revlamid, Dexamethasone, Platinol (or Cisplatin), Adriamycin (or Doxorubicin), Cyclophosphamide, and Etoposide.
I had it because I had a tumorous growth about a 4-6 weeks after a successful induction. The VRD-PACE (another variation is DT-PACE where you have thalidomide instead) and is more intense than induction but it’s what was needed. In some ways it may have prepared me a little for what may come with the stem cell transplant!

All the best

[znabParticipant]

Hi Tony,

Thanks for your response. I’m lucky that it went away after a few days.

Hope you’re keeping well.

Z

[znabParticipant]

Hi Rich,
I’m on day 9 of recovery and getting stronger everyday. My blood counts are super low at the moment, I was tested on Friday (the drop from Weds to Fri, the days I had my bloods, was shocking but expected and I’m feeling strong so it’s okay).
The treatment was VRD-PACE, so velcade and revlamid instead of thalidamide. My lump has gone so it’s done its job I hope! I get 21 days rest and then do another cycle. This should hopefully get me ready for the SCT.
I am very lucky to be treated at a hospital that puts patients up in its charity run hotel. It was just around the corner and I had someone stay with me too. It was much more comfortable than being in hospital for 5 day full days!
Regards,
Zainab

[znabParticipant]

Hi tearose,

Sorry to hear about your grandson, I hope his transplant goes well.
I hear you about your concerns. I was diagnosed with MM in July this year and have been super impressed with the NHS trust looking after me. Still have reservations about my GP practice but they acted fast too once they saw my blood results. I hope that your husband is treated very well when he needs it and I’m sure he will be.

All the best.

[znabParticipant]

Thanks Rich,
It was hard to accept but now realise that a lot of people would go through this. There’s lots of treatment and research available/being done so there is so much hope 🙂
It will be the same induction meds plus PACE – it’s intense and over 5 days so will be different to induction.
Will let you know how it goes,
🙂

[znabParticipant]

Thank you both 🙂

[znabParticipant]

I’m sad to say that due to a relapse much sooner than expected I am off the study. My blood and bone marrow tests were all good but I noticed a lump under my collar bone and a PET-CT showed that the myeloma is still quite active. My SCT has been postponed as I try a new chemo treatment.
I’m glad I took part and will have one last bone marrow biopsy for the study in the hope that it might help others.
Wishing you all much success xx

[znabParticipant]

Thanks again Rich… my SCT has been postponed, need some more chemo as the myeloma is present in my bones! It’s all too much BUT being part of this forum and knowing of peoples experiences lets me know that it will get better.

[znabParticipant]

Thanks Rich… I’ve decided to do the SCT… I’m high risk and after a great response the numbers are already going in the wrong direction 🙁

[Author]

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