[znabParticipant]

Mich05, it’s been nearly 2 months now and I feel SO much better. SCT is scheduled for 3rd Jan. Will keep you all posted x

[znabParticipant]

Hi Mo,

I asked my doctor if I had to have the SCT, he said if I didn’t I’d be off the study. I’m high risk and as far as I understand it, this study gives me a much more tailored maintenance then if I went for standard NHS. I’m not sure though, all a little bit confusing. I feel well and my bloods are coming back in to the correct ranges but not sure how long this would be for. I’m 43, maybe it’s better to do it now while I’m younger and healthy. I want to make an informed decision though rather than just being told what to do 😀
What diet changes have you made? I’ve given up sugar except natural sugars (honey and fruit are not the enemy!). If ever you’re craving chocolate and like dark chocolate check out honey cacao ltd.

All the best.

[znabParticipant]

Thanks for your message Tony and all the best to you all.
I’ve had my results from testing (bloods and biopsy) after the induction treatment and I’m blessed to say that the chemo has done it’s job well for me. Next would be the SCT, I thought it would be 4-6 weeks after induction but looks like it might be in January. This is a long road!
I hope it goes well for you all… let’s keep each updated via this thread.

[znabParticipant]

Hi Mich05,
Everyday was very different. I kept a diary of my side effects and noticed when certain things might happen (e.g. bloating – usually in week 2 of a cycle) but I also found my side effects were worse at the start.
Wishing you all the best x

[znabParticipant]

Hi Mo,

I hope you’re well. Just wanted to let you know that I’ve finished the 12 week induction chemo, it’s gone well and my doctor is pleased with my response. I feel so much better being off chemo – still a bit tired but that’s okay.
I hope you’re doing well with it all.
All the best,

Zainab

[znabParticipant]

Thank you Ann.
I’m going for a refit as it’s very uncomfortable, I can’t sit in it and don’t want to spend my whole day standing 😀

[znabParticipant]

A quick question Ann… how was he getting in and out of a car? My brother took me to Stanmore for the fitting. He drives a VW but I couldn’t get into his car with the brace on! It was quite traumatic for me 🙁
A nurse tried to help but I ended up removing the brace to go home.
Thanks

• This reply was modified 2 years, 4 months ago by  znab.

[znabParticipant]

Dear Ann,

Thank you for your message – I hope that he is doing well 🙂
Today has been a bit better and the doctor did say that it would take a couple of weeks to get used to. Messages like yours give me hope so thank you.

Wishing you both all the best x

[znabParticipant]

Hi Mo,
Thanks for your response. It is a disease that takes a while to understand but everything has just moved so fast – information overload! This forum really helps 🙂
I decided to participate in the study. I was told that none of the drugs are new, they have all been used before, just not in this combination, so from that point I wasn’t more worried – either route will have unwanted affects. I’m being treated at UCLH in London and feel that they are quite knowledgeable about the trial, the nurses are amazing and if they are not sure will always check with the doctor before advising me.
I’ve just finished cycle 1 and started cycle 2 today. I had my 3 week review with the doctor and he’s pleased with how it’s going. So am I, paraprotein has gone from 47 to 8 in cycle 1!!! It’s different for everyone but it’s a great start for me. Side effects wise, nothing major but: tingling on hands and feet the first day but that went away (keep hydrated and I drink coconut water now too), swelling in legs and ankles (elevate legs during day/night), constipation (eat more fibre, drink warm water), tiredness/fatigue (be kind to yourself and rest when needed – I have found this hard as I don’t sleep during the day so I need to be kinder to myself!). Everyday is different.
I have bone lesions, some in the sternum so I have to wear a brace – it’s uncomfortable but with more wear I should get used to it.
I hope this helped and happy to answer any questions. I wish you all the best xxx

[znabParticipant]

Dear mulberry,

Thank you for your detailed response. It’s very much appreciated. Yes, it’s been so much information to take in in a short space of time. I think I know which way I’m inclined now but will ensure I have as much information as I can before making a final decision.

Best wishes,

Zainab

[Author]

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