Sorry to hear about your diagnosis, it is such a shock to be given this.
Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.
Do let me know if you’d like any advice or support, we’re here for you 👍
Good morning Rich.
Sorry for the late reply thanks again for your messages. My treatment has been going great 🤞 Tuesday will be the start of my 5th cycle so far I have 8 more cycles to go then stem cell treatment. Hopefully I will find out on Monday when I have my 1 to 1 with my doctor. I must admit the doctor reduced my steroids last week from 20 down to 10 my sleep was broken but not as bad as it was. I also had a bone infusion on my last day of chemo which made me have an iffy couple of days afterwards but nothing major. With regards to the steroids I’ve put nearly a stone on in weight 😬 I’ve been out for walks every day but can’t seem to loose any is this normal practice to prepare for stem cell treatment? I had lost a lot of weight before I was diagnosed with coeliac disease & Myeloma everyone I see on my walks keep saying eeh you look well (fat you mean) haha I think it’s because I have colour in my cheeks again as I had anaemia which has gone 🤞. If you have any info regarding the stem cell treatment what I need to get prepared for that would be great. Tha ms again for your messages.
Can’t wait to get back to full fitness so I can get out jogging & back on my bike.
Take care .
Stay safe
Peter
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 so sometimes I felt rather alone.
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 👍
Consultant is very happy with my progress everything is going in the right direction which is great news I’m just waiting for his letter to come through with all of the results from my bloods.
Consultant is contacting the doctor who will be dealing with my stem cell treatment & I presume a possible date? All depends on how busy the hospital is I guess & bed availability I suppose but I will let you know. I’ve just watched the stem cell video on YouTube very informative & straight to the point which is good to see. My consultant also mentioned after my stem cell treatment he will put me on maintenance medication? I take it this is for the rest of my life to try & prevent the myeloma from returning.
I’m onto my 5th cycle 6 more chemotherapy sessions to go after tomorrow I had chemo & steroids on Tuesday so I’ve had no sleep hardly since haha but that’s the norm I can deal with that no problem as my last 2 weeks I tend to pick up. I’ve still managed to go out for walks regardless as I am constantly keeping myself active.
Yes I’ve definitely piled on the pounds I am blaming the steroids haha too be honest my wife keeps showing me before pictures when I did loose a lot of weight again with coeliac diagnosis only a couple of months before my Myeloma diagnosis I didn’t realise how thin & guant looking along with anaemia that didn’t help either.
Like Ive said I’ve not had any issues at all throughout my chemotherapy treatment so hopefully my stem cell treatment will go well 🙏
It does look quite daunting & the waiting for your body to adjust to everything that is going on inside of it. I’m pleased you had no problems with your treatment. I am not looking forward to the gluten free food as I don’t like it anyways haha especially the bread I have a constant war with it. I will be taking my own snacks etc although by the sounds of it I won’t have much of an appetite which will loose my fat I’ve put on haha by the sounds of it I will be visiting the toilet a few times 😬. I will have my music with me at all times as well as a kindle etc thanks for the tips.
It’s great to hear that you are 2.5 years myeloma free mate & I will be following in your footsteps before all of this I used to run half marathons & kept myself fit but once I’ve got all clear I will concentrate on cycling & walking.
It’s great to hear that you are well & active. I’ve always had a positive mind following my diagnosis & too be honest I’ve not really thought about it I’ve just done what the consultant has told me. As I was following people in Instagram & it was quite depressing & not anything I was going through & soon realised that everyone’s body is different & reacts to the treatment differently so I guess I’ve been lucky to have no issues.
Hi Peter,
Sorry to hear about your diagnosis, it is such a shock to be given this.
Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.
Do let me know if you’d like any advice or support, we’re here for you 👍
Rich.
Good morning Rich.
Sorry for the late reply thanks again for your messages. My treatment has been going great 🤞 Tuesday will be the start of my 5th cycle so far I have 8 more cycles to go then stem cell treatment. Hopefully I will find out on Monday when I have my 1 to 1 with my doctor. I must admit the doctor reduced my steroids last week from 20 down to 10 my sleep was broken but not as bad as it was. I also had a bone infusion on my last day of chemo which made me have an iffy couple of days afterwards but nothing major. With regards to the steroids I’ve put nearly a stone on in weight 😬 I’ve been out for walks every day but can’t seem to loose any is this normal practice to prepare for stem cell treatment? I had lost a lot of weight before I was diagnosed with coeliac disease & Myeloma everyone I see on my walks keep saying eeh you look well (fat you mean) haha I think it’s because I have colour in my cheeks again as I had anaemia which has gone 🤞. If you have any info regarding the stem cell treatment what I need to get prepared for that would be great. Tha ms again for your messages.
Can’t wait to get back to full fitness so I can get out jogging & back on my bike.
Take care .
Stay safe
Peter
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 so sometimes I felt rather alone.
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 👍
Myeloma UK have some videos about the SCT process –
https://www.myeloma.org.uk/videos/high-dose-therapy-and-autologous-stem-cell-transplantation/
And an info sheet –
https://www.myeloma.org.uk/documents/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/
Good morning Rich.
Thanks again for your reply much appreciated.
Consultant is very happy with my progress everything is going in the right direction which is great news I’m just waiting for his letter to come through with all of the results from my bloods.
Consultant is contacting the doctor who will be dealing with my stem cell treatment & I presume a possible date? All depends on how busy the hospital is I guess & bed availability I suppose but I will let you know. I’ve just watched the stem cell video on YouTube very informative & straight to the point which is good to see. My consultant also mentioned after my stem cell treatment he will put me on maintenance medication? I take it this is for the rest of my life to try & prevent the myeloma from returning.
I’m onto my 5th cycle 6 more chemotherapy sessions to go after tomorrow I had chemo & steroids on Tuesday so I’ve had no sleep hardly since haha but that’s the norm I can deal with that no problem as my last 2 weeks I tend to pick up. I’ve still managed to go out for walks regardless as I am constantly keeping myself active.
Yes I’ve definitely piled on the pounds I am blaming the steroids haha too be honest my wife keeps showing me before pictures when I did loose a lot of weight again with coeliac diagnosis only a couple of months before my Myeloma diagnosis I didn’t realise how thin & guant looking along with anaemia that didn’t help either.
Like Ive said I’ve not had any issues at all throughout my chemotherapy treatment so hopefully my stem cell treatment will go well 🙏
It does look quite daunting & the waiting for your body to adjust to everything that is going on inside of it. I’m pleased you had no problems with your treatment. I am not looking forward to the gluten free food as I don’t like it anyways haha especially the bread I have a constant war with it. I will be taking my own snacks etc although by the sounds of it I won’t have much of an appetite which will loose my fat I’ve put on haha by the sounds of it I will be visiting the toilet a few times 😬. I will have my music with me at all times as well as a kindle etc thanks for the tips.
It’s great to hear that you are 2.5 years myeloma free mate & I will be following in your footsteps before all of this I used to run half marathons & kept myself fit but once I’ve got all clear I will concentrate on cycling & walking.
It’s great to hear that you are well & active. I’ve always had a positive mind following my diagnosis & too be honest I’ve not really thought about it I’ve just done what the consultant has told me. As I was following people in Instagram & it was quite depressing & not anything I was going through & soon realised that everyone’s body is different & reacts to the treatment differently so I guess I’ve been lucky to have no issues.
I’m waffling now mate.
Take care & thanks for the emails & info.
Kind regards
Peter Henderson