Hi there,
I am one of the forum volunteers. I was diagnosed 3 years ago and it came as a complete to me. I was in complete kidney failure and needed dialysis. Aft 6 rounds of chemo the cancer had stabilised and I cam eoff it. I then had a stem cell transplant in January 2019 (and I can give you as much information about that as you want) and since then my cancer has not been active. It is an incurable disease, but quite often it is treatable. It is quite often called being in remission, although it isn`t really as the cancer is still there in the background, so it will return one day, but until it does I can live a relatively normal life and do so to the full. If it has taught me one thing, it is not to put off anything you want to do because anything like this can happen to any of us at any time.
I am sure that when he gets into the treatment it will settle down and he will feel better. I had VTD chemo, slightly different from what your husband is having, but I hardly noticed any side effects at all. If there is anything you want me to explain in more depth, please let me know.
Dont forget that there is help on here withAsk the Nurse, or thePeer buddy` system where you can speak on the phone with someone who has gone through it.
It is not easy sometimes, and you will go through some emotional stuff together, but both of you keep your chins up and fight it head-on. My wife and I did that and I am still here to talk about it!
Please keep in touch and let us know how he is doing.
Sincere regards, Tony
Hi AC,
I am one of the forum volunteers. I had a transplant in 2019, and although like you I was concerned abut it, my cancer has been inactive ever since so although the procedure is not pleasant, for me it was well worth and and given the option of doing it again if I needed to I certainly would have it. I don`t think I would have been here today, or a least my life would not have been as normal as it is had I not had it.
Only you can make the choice whether or not to have it, but in my experience, the vast majority of those who I have spoken to would have it again.
Don`t forget that if you want to speak to someone who has already gone through it, you can use the peer buddy system where you can ask to speak to someone on the phone which might be easier than doing it on here.
Please keep us informed on your progress and whether or not you decide to go for SCT.
Regards, Tony
Hi there,
I was diagnosed with MM following fractures of 2 vertebrae, and it came as a complete shock to me. I hade 6 months worth of Velcade, Thalidomide and Dexamethazone which significantly reduced my paraproteins. I had a stem cell transplant in January 2019 and had a bone marrow biopsy to see what effect it had had. There were no detectable signs that the cancer was active. I am now tested every 3 months to identify any changes, but since then the cancer has been inactive.
I know that it will one day return, I just don`t know when, so I am making the most of life while I can. If you need more specific information about treatments that I have experienced, or I can help in any other way, please let me know.
Regards, Tony
Hi Beetlejuice,
Glad to hear you are still here so long after diagnosis, it certainly helps me when I hear of people surviving this long. As for thinking of stopping the VTD, have you considered discussing it with your medical team? I am sure they would give you honest and impartial advice, but the only thing I can suggest is that I dont think they would have kept you on it this long if they didnt think it was doing you any good.
No matter, you are still here and it sounds like you are enjoying a full life. If having Myeloma has taught me anything, it is to make sure to enjoy whatever I can, and to not put off till tomorrow anything that I want to do today, and that goes for anyone, not just those living with Myeloma.
Stay positive and let us know how you get on.
Regards, Tony
Hi Lottie,
Thanks for the update, I am pleased that things are going in the right direction for you. As for bone strengtheners, I am on a daily tablet dose of Adcal, which is a calcium supplement, and a monthly infusion of Zometa to help reduce the likelihood of fractures in the future. The only side effects I get from that are feeling a bit rubbish a couple of hours after I have had it, but I find that if I go to sleep for a couple of hours I am usually ok.
Keep your chin up and stay positive and keep us updated with your progress.
Regards, Tony
Hi Tom,
Nice to hear from you. I am one of the forum volunteers, and although I have not had MM as long as you, I have been through most of the treatments that you have so I know what they are like.
Its great to hear that you have a positive attitude, I am sure that it has got you this far, and will help with whatever you need to face in the future. Please keep us updated as to how you are progressing.
Regards, Tony
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
