[hendaz68Participant]

Good morning
Hope everyone is ok?
I am new to all of this so please be kind 😬.
November 8th I got diagnosed with Myeloma blood cancer 😞 I’ve just completed my 1st cycle & have my next chemo session on 14th December.
I also got diagnosed with coeliac disease in July 2021 so a double whammy 🥴 I’m more upset I have to eat gluten free food & drink for the rest of my life 😞
Hopefully I will make some new friends along my journey.
Take care everyone & have a good weekend.

[paulapurpleParticipant]

I’ve just answered your other message. Just to say I made some friends, online and in my local area, from the UK Myeloma Facebook page so you might want to join that. Some areas also have local support groups. Myeloma UK will have a list of them.
Good luck

Paula

[mulberryParticipant]

Welcome to the forum.
When I was diagnosed my test results suggested that I may be coeliac too, along with a few other things. I didn’t get the definitive test but a few months later, on reading that more myeloma patients are coeliac than chance would suggest, started a gluten free diet which I’ve now been on for more than 3 years, and I do definitely feel better for it, even though I miss proper bread!

I hope your results from your first cycle are good, and best of luck for your next cycle.

[hendaz68Participant]

Hi Paula.

Thank you for replying I’m new to all of this but appreciate all comments & info I’m not on Facebook unfortunately ☹️

I’m going in for my 6th Chemo treatment today 1st week of cycle 2. I’ve not been sleeping very good since my chemo on Tuesday I guess it’s down to the steroids & meds?

Thank you for taking time out & replying I promise to try & keep up to date with this forum 😁

Take care

Peter

[hendaz68Participant]

Hi Mulberry

Thanks for your reply much appreciated 😊
Wow I didn’t realise that more Myeloma patients have Coeliac disease as well.
Yeah I was just getting into my gluten free routine when my Myeloma diagnosis reared its ugly head lol.
Managing both fine if I’m honest apart from no sleep whilst on the chemo cycles, but I can cope with that.
The thing I can’t cope with is gluten free bread its awful 🤢.
Hope you are ok as well.
Thanks again.
Peter

[mulberryParticipant]

Hi Peter
How are you getting on and how are you sleeping? I often couldn’t sleep, or frequently woke during the night, while I was on induction treatment, but since then I’ve generally slept very well.
Jane

[richfsModerator]

Hi Peter – just thought I’d post that message here as well as the message I just sent, the links etc. may be useful to others who are starting out on the daunting treatment pathway. Rich.

—

Thanks for your message Peter, I’m really glad that you’re getting on so well with the induction treatment. Our mantra was very much “one day at a time”, but it’s good to plan and think ahead to a future of good health. How did you get on with your doctor today? Did you get any blood results? I expect you’re still a good few weeks away from the Stem Cell Transplant.

I, too, lost weight before diagnosis and in the early stages of treatment, but with the steroids managed to put it all back on again before the SCT which was good as I didn’t eat much at all for around 10 days after that. So, if you’re looking ‘well fed’, I’d definitely say that’s a good thing and will make it easier to get through the SCT as you’ll likely loose your appetite for a few days. Do keep up walking and as much exercise as you can before the SCT, best to go into these things as fit as you can.

Myeloma UK have some videos about the SCT process and an info sheet – I’ll put the links in another message as the forum doesn’t like you using links!

My main advice to you would be to see it as a continuation of the induction chemotherapy, and it sounds like you’re getting on well with that. I was really frightened about the high dose chemotherapy and worried that my transplanted stem cells wouldn’t work, but it all went really smoothly and was much less traumatic than I had expected. I was very tired, and there were a few days when my gut was pretty rotten (British understatement!) but I got through it and would certainly have the same treatment again if the need arises.

The isolation in hospital was difficult, even with visitors (this was pre-pandemic!) I often felt alone and anxious, so it was good to have some music and podcasts to listen to on a bluetooth speaker. The staff were fantastic, very caring, but all too busy rushing from patient to patient.

I’m sure you’ll speak to your team before your stay in hospital for the SCT, but if you’re coeliac you’ll have to really make sure that they can cater for you. I’m vegetarian so found the options quite limited, but most of the meals were actually pretty tasty.

I’ll stop waffling now, but do keep in touch as your treatment continues and I’ll be happy to chat about any stage of it. I’m 2½ years post treatment and enjoying cycling (a total of 1,000 miles in 2021!) and long walks, so yes, focus on getting better and you can get back to what you love.

Best wishes mate, and do get in touch anytime,
Rich 👍

[richfsModerator]

Myeloma UK have some videos about the SCT process –

https://www.myeloma.org.uk/videos/high-dose-therapy-and-autologous-stem-cell-transplantation/

[richfsModerator]

And an info sheet –

https://www.myeloma.org.uk/documents/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/

[richfsModerator]

Thanks for your message Peter, I’m sure your positive attitude will help you through each stage of treatment. I’ve always thought that even if it doesn’t help beat the disease, at least you feel better when you’re smiling! When my back is achey or if I was fatigued from the treatment, the best thing was lying down listening to “Just a Minute” or “The News Quiz” on the BBC Sounds App, laughter is certainly the best medicine, but don’t quote me on that! 🤣 We also enjoyed playing games like Trivial Pursuit without the board, just asking the questions as I could do that lying down – the distraction is good (even if my general knowledge isn’t!!)

Yes, the maintenance treatment is (as I understand it) a low-dose chemotherapy which you can be on for prolonged periods to keep the myeloma at bay. I wasn’t offered it, I think that Lenalidomide has only in the last couple of years been approved by the NHS for use following the SCT. Mulberry can let you know her experience as she’s been on it for some time, its aim is very much to extend the length of remission.

I asked a friend of ours who follows a gluten free diet (but is not Coeliac so doesn’t have to be quite so strict) after a visit to France if she’d had any bread, she said, “Yes, it was heaven, but I paid the price for it afterwards”. A couple of other friends are gluten free, so I know what sort of thing can be missed. They all swear by Doves Farm flours, they really are excellent and enable you to bake amazing GF bread, cakes, brownies, etc. They do loads, but this is the one my wife always uses – https://www.sainsburys.co.uk/gol-ui/product/doves-farm-gluten-free-plain-flour-1kg

Let me know when you get your blood results, being a scientist I did a graph of mine which showed the treatment was very effective 👍

I’m sure that in a few months time, after your SCT, you’ll find that the achievement of long walks or rides (or runs, don’t rule anything out!), will feel even better than it used to. I get a bit emotional sometimes after walking 10 or 15 miles on the coast path, or cycling 30 miles on Dartmoor, what a privilege and joy to be able to enjoy not just nature, but also the feeling of pushing our bodies hard. You’ll have to listen to your body, but you will get your energy back. Whilst the SCT was tough and draining, there wasn’t any Dex, so sleep isn’t as elusive! 🤣

Take care mate, speak to you soon,
Rich.

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