[falynParticipant]

Hello, my name is Rafael. I was diagnosed with multiple myeloma in May and I am in my fourth cycle of chemotherapy. They told me to do a cell transplant and to do a very strong chemotherapy. They explained to me the side effects of this chemotherapy, which means I have to be in the hospital for about 4 weeks. The truth is I am quite afraid of the effects of this chemo. My question is: Could someone who has gone through this type of chemo tell me how bad it is, since I know there are other options which I am investigating.
Thanks to everyone.

[lottieParticipant]

Hi Rafael

Sorry to hear about the diagnosis.

I was diagnosed in May 2022 and had 4 cycles of DVTD.

I went through my stem cell transplant in Jan 2023. I had the strong chemo during which time I was given ice lollies to suck as this can prevent mucositis in the mouth. The chemo was IV and I was very nervous too.
.
I was given a few mouthwashes to use too to keep my mouth free of bacteria.

I was very lucky as I did not have many side effects. I went off my food, a bit of nausea and a bit of upset stomach apart from that I was OK. I was released from hospital on Day 15. The days start counting from the day you have your stem cells returned.

Your team will look after you very well.

I am sure other people will respond with their experience to you too.

Good luck.

Lottie

[robert0439Participant]

Hello Rafael. As Lottie has said, sorry to hear about your diagnosis. For me, I was diagnosed with smouldering Myeloma one year after I had retired in 2013. I was going strong until 2018 when my Paraprotein levels increased dramatically so it was time for my stem cell transplant.

I had several years to do some research on this as I knew sooner or later it would happen. Anyway, I had my SCT in 2018. Again, just like Lottie I had masses of chemotherapy to prepare myself for the actual SCT which I had in Nottingham City Hospital where I was in isolation for 14 days.

Apart from feeling tired and pretty fatigued, I had no real major issues with the chemotherapy. No sickness at all so I consider myself very lucky. Again, I was lucky as I has retired a few years prior, so did not have to worry about work etc. prior to the SCT, I had my stem cells harvested which was basically, like having dialysis where it was blood out, harvest the cells and then blood back in. It was a 4 day process where I spent around 4 hours each day on the machine.

To make life easier I had a Hickman Line fitted where this was used to take blood out to test and also to put drugs into me. A simple procedure to fit this done under a local anaesthetic.

Here we are 6 years later and I’m living life as full as I can. I’m on a mixture of daily drugs to keep my Paraprotein levels low and also, my kappa light chains under control and my Myeloma, is kappa light chain related.

It’s not an easy journey however, I would not have done anything different with hindsight.

You are in the best of hands with the NHS. They have done and continue to do the very best for me, and I cannot thank them enough. I will forever be in awe for what they have done and I go out of my way to tell them this each time I have a follow up with them following my monthly blood test.

Wishing you all the best Rafael. ❤️

[squirrelParticipant]

Hi Rafael
The information given above was very much the same for me except I had a tandem transplant.
SCT Oct 2023 and Jan 2024.
The reason being I have ultra high risk strain of myeloma.
The first transplant I managed to get an infection and was a bit more unwell due to it but hospital realized very quickly and extra medications given. The result meant I stayed in hospital a bit longer.
On the second transplant I caught COVID for the first time and again it was quickly dealt with.
What I am trying to say is the care you receive going through these transplants is second to none.
I unfortunately didn’t get the remission hoped for but it is impossible to know that before treatment.
The treatment takes a lot out of you but at the end of the day I believe it’s necessary.
We all know the alternative!
Hope it all goes well for you.
Take care and be kind to yourself.
Wishing you all the best.

[falynParticipant]

I don’t know how to thank you for your experiences in response to my question.
It has calmed me down a lot to hear from other people who have gone through this.
Thank you from the bottom of my heart.
Although I know that each person is different,
I feel strong and with a lot of spirit. I think that in the end I will do it this time.

Take care of yourselves

A big hug

Rafael

[boerboelParticipant]

My name is Steve, I am 53 years old and I am on my 4th cycle of chemotherapy, since my diagnosis I have suffered with severe back pain and had vertebrae plasty surgery to cement 8 fractures in my spine, my pain and mobility improved following the surgery but I am still in pain daily and simple things, like getting in and out of a chair or getting in and out of bed are painful, does anyone else suffer like this? I am hopeful that this pain will subside when I have my SCT which should be happening soon.

[falynParticipant]

Hello Steve.
Because of myeloma, I also have an injury to my spine and ribs. I have fractured T-12, L1, and C2, the latter of which requires me to wear a collar. My pain is also very strong and any extra movement makes it difficult for me. I need help getting out of bed or out of a chair like you. I use crutches to walk because I had radiotherapy on my hip and I also feel pain when walking just ten metres; I have to sit down. I take 50mg of morphine twice a day (morning and night), also morphine solution every two hours, and even so, the back pain is still there, I think. Based on the comments that my colleagues have kindly sent me, I will have the transplant and put my fears of chemo in a jar and throw it away. I want to tell you that I am encouraged and go ahead.

All the best

Rafael

[Author]

Posts