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Hi I'm new to this forum, today I was given a second chance I received a stem cell donation I'm so grateful! Any advice about what to expect and how to deal with side effects from now onwards! 🙂
Hi there and welcome to the forum. I’m one of the community champions and had a stem cell transplant myself over six years ago for ALL.
It’s difficult to be able to tell you what to expect as we are all different and react differently to transplants. Side effects can vary from one person to another too, so it is often a case of dealing with things as they come up, rather than planning for things that might not happen.
In terms of the transplant itself the actual process is a bit of an anticlimax, given all the excitement in the build up. The process is much like having a transfusion .
For most of us the conditioning chemotherapy that we have just before the transplant kicks in shortly after the transplant and can make you feel very poorly and groggy for a few days. I think if you speak to most patients this seems to affect us all, but again can be worse in some than others. You’ll probably be sick and your bowels won’t feel like your own if you’re anything like me!
This feeling will probably last a week or two by which time the graft is likely to be taking affect and you can start looking for your counts to start climbing. That’s such a good feeling, but again, the point that starts can vary from person to person. When the blood counts start to climb and your marrow is producing cells again, the time it takes to be able to think about going home isn’t too long in the scheme of things.
Then it’s a case of being cautious to avoid infections and get on with recovery which can be a long, slow, but steady process. Again, how quickly you will recover varies widely and depends on a multitude of factors due to how unique each of us is. In most cases it takes several months to start to feel something approaching normal, and it’s often the case that you won’t get back to completely how you were. We end up establishing a ‘new normal’.
In terms of side effects the sickness and runny rear is common in the early days, and I guess fatigue is common to us all for some time afterwards. A sore mouth is quite common and all of us will notice a lack of appetite and taste changes. They will go in time. ‘Chemo brain’ is a common side effect and you’ll find yourself hunting for words or peoples names that you can’t remember. It can be frustrating, but you do get used to it.
I guess the scariest side effect we hear about is Graft versus Host Disease (GvHD), but not everyone will be affected by it. It varies in its severity from a mild discomfort, such as itchy skin, to more severe forms which affect the gut and some organs. A small amount of GvHD is a good thing as it is also working versus the Cancer. In most cases GvHD can be treated with a course of steroids, or treatments such as Extra Corporeal Photophoresis (ECP), but some patients can have lasting effects.
The main thing to concern yourself with is not to think of the things that ‘might’ happen, but to deal with the things that ‘do’ happen as and when they occur. Make sure that you tell your medical team of any changes to the way you feel, or signs that your body gives you, as soon as you can. If anything worries you, ask them. It may be nothing and they will have been asked before, but at least you will get either peace of mind that you shouldn’t be worried, or they can start any supplementary treatment early.
And of course, we are all here to support you and to reassure you. Most things that happen to you will have been experienced by somebody here, and they can tell you how they coped. And backing all of us patients up are the fantastic Anthony Nolan team, who have the widest range of experience and access to all sorts of information and resources that can help.
I hope this has helped a little and please ask any questions you have. We’ve all been there and we can help if you need it. In the meantime, best wishes to you through your transplant and recovery and please keep us updated as things progress.
Having a transplant is a process. Hopefully your doctor has a good team to help you understand what the steps are and how to make everything go better along the way.
The first step is finding a match and if you have that, then you are on your way.
Chemo can be tough but its manageable. Try to be positive even on days where you will feel really bad. It's only temporary!
The transplant is fairly uneventful as Steve stated. It's like a blood transfusion. The cells will take a couple of weeks to settle in your marrow and start cranking out new white blood cells. Be patient.
Post transplant you are very open to infection since your body doesn't have anything to fight it with. Take it seriously...
Hopefully your team has someone who can talk with you about post transplant effects and concerns.
Stay positive and fight