Hi Lottie,
I am one of the forum volunteers. Great news about your paraproteins and that you can now move forward to SCT. I have had the procedure so I can tell you what it was like for me.
First of all, you will need to have your stem cells harvested. This is done on a specialist unit and I have been told that there are only 9 centres in England that do it, I had to travel 70 miles each way to get mine done. The process takes at least a day, and possibly up to 2 days depending on how quickly they can do the harvest. You may need a shot of chemo before the harvest, but I did not find any side effects from mine.
They then store the cells in liquid nitrogen until they are ready to be re-implanted. When the time comes (I was waiting about 2 months), they will send you to a specialist oncology unit. They tell you that you could spend up to 4 weeks there, although I was only in for 3 weeks. They give you a high-dose chemo drug, I had Melphelan, and to be honest the side effects are not pleasant. I knew I would lose my hair so I did not want the chemo to take it, so I shaved my head the day before I went in!
You may well get something called mucositis, which is inflammation of the mucus membranes in your mouth and throat. This is unpleasant but you have to remember that it is only temporary and for me far outweighed the benefit I got from the SCT. You will be in an isolation room as yuo will have no immunity to germs, bacteria, viruses etc. You will even have what is known as a neutropenic diet to make sure that there are no bacteria in the food you eat. For example, you can eat the flesh of an apple, but you cannot eat the skin as no matter how many times you wash it, you cannot guarantee it being germ-free.
Most rooms have their own fridge/freezer. I found eating difficult due to the mucositis, so I lived on ice pops and yogurts which were both easy to swallow and soothing due to them being cold. You probably will not feel like eating or chewing anything solid for a few days.
I had my transplant 2 and a half years ago, and to date, there has been no sign of the cancer returning. As I have already said, I found the effects of the chemo unpleasant, and the isolation was difficult, but was it worth it? Well, for me, absolutely I would go through it again if I needed to as there is a good chance I would not be here today if I hadn`t.
Be positive about it and keep your chin up. If there is anything else you need to know, please ask, and let us know how yo get on.
Regards, Tony
Hi there,
I also experienced the same thing when I was on chemo. However, things did eventually return to normal once the treatment had ended. There is light at the end of the tunnel!
Regards, Tony
Hi Norman,
That’s great to hear. I think living with something like MM changes oyur perspective and life. I have certainly learned to not put something off until tomorrow if you can do it today. Take every opportunity and make the best of what you have got.
Keep smiling.
Regards, Tony
Hi Lottie,
I am really pleased to hear things are going in the right direction for you. It`s hard to deal with sometimes, but hopefully, it will all have been worth it in the end. Please keep us updated on how you are progressing.
Regards, Tony
Hi there,
I am one of the forum volunteers and have only just seen your thread. I also have MM. You are correct in saying that being diagnosed is a life-changing experience both physically and mentally, but there are lots of treatments available, which means that if one regime doesn`t work well, there are others that they can try.
I know it sounds a lot to take all of those tablets, but if it works, then it’s worth it. At least if they make you rattle, people will hear you coming! We are here to support you through whatever you need to go through. Please keep us updated on how you are and how you are feeling. A lot of us on here have been through what you are going to go through so we know what it is like. Keep smiling and keep your chin up.
Regards, Tony
Hi there,
I am one of the forum volunteers and have only just seen your post. Am I correct in saying you are going for SCT on monday? If so, I have had the same treatment, so if you want any information from someone who has experienced going through it, do not hesitate to ask.
Regards, Tony
I initially had 6 rounds of VTD. (Velcade, Thalidomide and Dexamethasone).
These drugs may be different from the regime your mother is on, I think they tailor the drugs to the needs of the patient. You will hear of other drugs, but I think generally they do the same thing but in slightly different ways. And thanks for your kind words about my condition, it is very nice of you.
keep in touch. Regards, Tony
Well that sounds positive! I am pleased for you that it has gone that way. In my experience you just have to stick with the regime, with the hope that things will get better in the future, which is exactly what happened to me. In my opinion, it is worth it in the long run, and I would definitely have the treatment again because for me, the benefits outweigh the unpleasant aspects of the treatment. Please let us know how you get on.
Regards, Tony
Hi there,
I am one of the forum volunteers and I have Myeloma. I think it is true to say that people respond to treatment in different ways or degrees of feeling unwell depending on their age and what other underlying conditions they might have. I had similar treatment to your mother and was very ill during the regime, far worse than the disease made me. However I have now been free of active cancer for 2 and a half years, so for me all of the feeling ill and unpleasantness was worth it in the end.
Tell her she is not the only one to suffer, but if she stays with it, it might be better for her in the long run. And of course there is always hope, so try to keep her spirits up and look at the long game rather than what is happening today, although I know from personal experience that that is easier said then done.
Please keep us updated as to how she is.
Regards, Tony
hi there,
have you tried to get a phone conversation with your consultant to see if can suggest an alternative drug? My experience is that they are very approachable in this regard if your current regime is causing difficulties. It is possible that he might be able to suggest alternative drug which might not have the same side effects.
regards, Tony
Hi Marky,
I would try and get a phone consultation with your consultant. If you tell his secretary that you have concerns and that you would like a quick chat with him, I am sure they would try to accommodate you. In my experience they have always been very helpful in alleviating concerns.
Regards, Tony
Hi Sparkles,
I am also one of the forum volunteers. I feel for your Dad as I went through something similar. It is very hard to offer words of comfort when it must feel like the world is against you, but please do not lose hope and determination to carry on, hopefully things will get better. There are new treatments coming out all the time, and it might be a case of finding the right one for him.
Keep your chin up and stay strong for both of you, and keep us informed as to what happens.
Regards, Tony
Hi there,
I am one of the forum volunteeers. Although I have not had the same treatment as you, I have had some which was not at all pleasant. I had a stem cell transplant 2 and a half year ago, and since then I have had no detectable cancer, so for me it was worth it.
I know you must be going through a horrendous time, but stick with it and you will hopefully reap the benefits in the future. Stay strong and keep in touch.
Regards, Tony
Hi Lottie,
I am also one of the forum volunteers. I don’t know why but I have only just picked up your original post so I apologise for not replying sooner. Looking at the posts that have been sent to you already, there is not much more to say other than the disease affects different people in different ways, and although it is not curable, it is controllable, and there are many different treatments available, so if one regime doesn’t work well, they can try a different one. Also, there are new treatments coming out all the time, but in my view as a sufferer, one of the best things you can have is a positive attitude. For me, it was a bit of a wake-up call to say that none of us are here forever, and although I know nothing is going to happen to me in the near future, that I shouldn`t put off till tomorrow when I can do today. I know it is difficult to do, but try to put it at the back of your mind and go out there and enjoy yourself. There are lots of people who have lived with the disease for many years, and you could be one of those as well.
Don`t let it affect what you do or how you enjoy your life in the way that you want to if you are physically able to. You will find ways to cope, and with the support of medical science, and family and friends, the future is by no means necessarily bad news.
Please keep us updated as to how you are getting on.
Regards, Tony
Hi Slimynose,
Sorry for not responding for a couple of weeks but I have not been available. I just wondered if you have had an update on whether your DT-PACE is working or not, and also if you had spoken with the children and if so, how they took it.
Keep in contact with us and let us know what is happening.
Regards, Tony
