I have had my collection of stem cells and I am now waiting for transplant. I have been told the chemo before transplant is tough, would like to know what people have done to make it easier.
I’m glad that things have gone well with your stem cell collection and I’m wishing you the best of luck with the SCT. I think a good thing you can do ahead of SCT if you can is to try to improve your fitness - even if it’s gentle walking, anything you can do to get your body as healthy as possible prior to SCT will definitely help your body when it comes to the chemo. Some people suck on ice cubes to help prevent mouth ulcers, I didn’t know about this and I didn’t get any mouth ulcers, so there is no guarantee it will work but it might be something to look into? Beyond that, I would try to plan to have lots of distractions - books, films, activities - one of the best things that helped when things got tough was to try to get my mind distracted,
Your probably not going to want to eat a lot ( met one girl who did nothing but eat during the transplant phase) goes against everything anyone clinical will tell you but EAT, in fact, over eat because there's a good possibility you will loose a lot of weight, it's not a given but it's more likely than not.
Fitness is something that is also important even after I have just said over eat.
It's not an easy thing to go through, some have it easier than others, I was in the middle and in hospital for 4 weeks.
Having been there, I don't believe there is much you can do to physically prepare for chemo and the transplant. My doctor described the procedure as, "We're going to take you to the edge and pull you back". It felt every bit as that. Just after the chemo, I felt okay for a few days but as time progressed, my cognitive abilities dropped significantly. At times I found it difficult to determine where I was or even remember visitors. I simply wasn't making long-term memories for about seven days. After two and a half weeks confined in the hepa filtered, pressurized hospital room, I was told I could go home. I couldn't go anywhere or be alone. I had strict food preparation procedures that had to be followed as well as careful maintenance procedure on my vascular catheter. It took about four weeks from the chemo to recover from the physical exhaustion it brought on. Then, 90 days later, I had 36 minutes of total body irradiation and a donor transplant. The radiation caused a slow depletion of my existing bone marrow (rather than sudden like with chemo) to allow the donor marrow to grow. The infusion of donor cells can be a dangerous procedure and is carefully monitored. Mine went without a problem and, within 30 days there was little of my bone marrow left. Once everything was completed, I went into remission and have remained there for now 14 years so all the discomfort and unpleasantness paid off.
My approach to the entire process was to take one day at a time. I just needed to get through today. Tomorrow is another day and we'll see what it brings. And one day the treatment was over. It did take me a few more years to get back to feeling normal, though. It wasn't immediate. Throughout the entire process, I did exactly what my doctor told me to do without second guessing the instructions.
Bone marrow transplants are organ transplants that may require life-long immune suppression but, unlike other organ transplants, they also may not. I was one of the lucky few whose Graft Versus Host Disease (GVHD - your body's effort to rid itself of foreign tissue) was so minimal that I didn't need immune suppression. It's a double-edge sword, though, over the years GVHD has pushed my blood pressure up to unacceptable levels, which in one case, caused a minor stroke. Fortunately, the stroke left no permanent damage but we now manage my blood pressure carefully.
I got my life back and have since traveled extensively; Machu Piccu in Peru, the Okavango Delta in Botswana, Ankor Wat in Cambodia and dozens of lesser known but exciting places in the world. You can get your life back. It just takes time.
Hi Randall, I read your post with much interest. I am 44 and was just diagnosed yesterday. I am yet to hear about the treatment plan (hopefully on Friday). I am also very much a take it one day at a time person and who knows what lies ahead for me as I know treatment varies per person on this one. I am ready to take it all on and your story has given me a positive outlook. Wishing you continued health.
Hi Yeknom: I read Randell's blog, it's sounds like it's not myeloma but one of the others that requires a donor, if you've got myeloma then you probably won't need a donor. There's some good info in the blog but the story is more than likely making you worry a lot. Speak to your specialist or Myeloma UK but normally with Myeloma they take the stem cells and give them a wash and brush up and put them back. The treatment can vary from case to case so time in hospital will vary from 2.5 weeks to 8 week's (that's the most I've heard of), it's not pleasant for anyone and nobody wants to go through it again. I have Myeloma but I'm on trials because I've got a rubbish gene that puts me in a high risk category, that means that I will have been on Chimo for 2.5 years by the time it's over in a few months but it's strange how you get used to things and you also meet a lot of people, often in a worse position to you and unfortunately that makes you feel better, which is sad.
It's going to be a tough first 6 months and strange things will/may happen to you because the more Chimo you have, your immune system gets crappier and you catch things + the drugs will have there own special effects but it will get better, so stay with it.
Mine was indeed Multiple Myeloma. There are many types of Myeloma (a combination of five heavy protein chains any one of which coupled with one of two light protein chains and then combined with an additional one of 10 subtype proteins) each with different levels of aggressiveness. The more aggressive it is, the greater the required treatment. Mine was a particularly aggressive type that required donor transplant to finally kill it off.
Randall: that's very interesting to know and I'm sorry to hear you have got this particular nasty variable, the treatment regime sounded like a nightmare to go through, I had know idea there were even more aggressive versions of myeloma in the high risk band, hence why I thought it was a good idea for Yeknom to talk to Myeloma UK or the specialist when the treatment schedule is known. This just proves a point that even though we've all got Myeloma it's not the same trip for everyone and maybe I should have taken the advise I had from my specialist team originally to stay away from blogs and the internet.
It is very true that everyone is on a different road and the cancer experience, even within myeloma, can be very unique. It is definitely a good idea not to read too much into any one person’s individual journey as you have your own path to follow. But on the other hand, support groups like this can sometimes be very helpful as there are some common themes and you might find someone who is going through similar to you. It’s a really personal choice but I’m hoping you will stick around as I believe the health of the community is in the strength of its diverse experiences.
I was diagnosed with high risk multiple myeloma in 2017. I went on a trial in 2018, where I had 6 different types of chemo and stem cell, which were my own. It was a really tough year, don’t under estimate how you get through it. I reached rock bottom. But with my very supportive family and friends I came through it. I’m in remission now, I have been for 2 years. It’s tough.
