Hi Peter,
I am also one of the discussion forum volunteers, we are here for the both of you if we can help in any way. We are either living with the disease or caring for someone who is, so we have seen both sides of the story. Just take one day at a time and one thing at a time.
Please tell your wife about the help Myeloma UK can offer, I am sure that she will find it helpful. Let us know how you get on.
Regards, Tony
Hi David,
I am also one of the peer discussion volunteers. I am sorry to hear of your diagnosis, but as you might have already gathered, there are quite a few of us living with the disease. I was diagnosed 3 years ago and am relatively fit and well. No one likes the word cancer, but there are some very good treatments available with good outcomes. I hope that the regime that you are on is able to allow you to continue as near as normal a life as you can manage. Just take one day at a time, and one thing at a time.
Keep us updated as to how you are getting on, and we are here anytime you need us or would just like to chat. Onwards and upwards!
Regards, Tony
Hi Slimynose,
I just wanted to do a follow-up to see how things were going, particularly with th echildren? hopefully you will have got some help, and I am hoping that as you have not posted on here recently, it is a good sign and things are improving.
Please let me know how you are getting on.
Regards, Tony
Hi Caroline 123.
I am also one of the peer forum volunteers. I was diagnosed in May 2019 and have undergone autologous stem cell transplant. The outcome for me is that the cancer has been inactive since then, so it goes to show that teratments can be effective, and even if relapse occurs, then there are other lines of treatment that can be offered.
Because of those treatments, there are many of us living with the diseased leading normal lives. The main thing is to have a positive attitude. There will be times when he doesn`t want to do things, but when he does, go out and enjoy those days.
My wife cared for me when I was released from hospital, and she found it useful to speak with carers of other sufferers as to what was the best way to help me, so maybe that is something you could consider doing? She found it helpful to know that she was not alone and many other had gone through exactly what both of us were going through.
Keep us informed of how he is going on, and let us know if there is any other way in which we can help.
Regards, Tony
Hi Tommac, I am another of the peer forum volunteers. I was the same age as you when diagnosed and it hit me like a ton of bricks! however, you are absolutely right, positivity is the key. I have always said that dealing with cancer is as much an issue in your head as it is in your body.
There are lots of different treatments for Myeloma these days, and more are being developed all the time. Many of us who are living with the condition are living very normal lives, so there is hope. Just keep your chin up and I am sure your medical team will keep you informed of everything you need to know. Keep us updated as to what they say and what your progress is.
Power to us oldies!
Regards, Tony
Hi Satelite,
I am so sorry to hear that your appointment to find out what is happening has been put back. I know how difficult it is to wait, and what sorts of things can go through your mind. But lets hope they can get you sorted out as to what it is as soon as possible. Even if it is news you do not want to hear, remember that there are lots of different treatments available (with new ones coming on line fairly regularly), and lots of us managing to live normal lives whilst living with the disease.
I know it is difficult, but try to keep your chin up and stay positive, and remember we are always here and want to give you moral support when you need it.
Let us know what happens. regards, Tony
Hi Caroline,
I am one of the peer forum volunteers and I am living with the disease. I am sorry tohear that your husband has gone through the mill. When I had my stem cell harvest, it also took 2 days, and I think this is very common, so don`t worry about that.
Did he have the transplant and how is he doing now? Please let us know.
Thanks, Tony
Hi there,
I am also one of the peer forum volunteers. I have been very careful during the pandemic and have managed to avoid the plague. However, i think that things are now changing and alsthough I have not travelled abroad yet, I am now planning to go on a cruise in May. I think that if you take ensible precautions that we all have been doing, such as staying away from crowds, trying to void close personal contact with others, and washing and sanitising hands on a regular basis then you should be reasonably safe.
I would also be cautions of eating things with theri skin on, such as apples and pears, when they could have been handled by other people who might have something which you do not want, so just take the skin off!
I think the main thing is being sensible and getting on with your life. I think that COVID will be around for a lonfg time and we cannot all lock ourselves up until it dissappears. So I would say get out there and enjoy yourself, just be careful!
Regards Tony
Hi Suzi123,
I am one of the peer forum volunteers. I am very sorry to hear of your diagnosis especially as you have been there before, but you obviously survived that one, so of course that with treatment, a positive outlook and some hope you can live many years with Myeloma.
Although it is not curable, it is treateable. I was diagnosed in different circumstances to you, but the thing is hopefully they will have caught yours at an early stage. There are many treatments now available so your medical team will have a number of options which they will of course discuss with you to from a plan of action as to what is best.
I had a stem cell transplant over 2 years ago, and since then there has been no active signs of the cancer, although it is still there but just lying dormant. This means I can live a nearly normal life. I can do all the things I want to do, including swimming, riding my mountain bike and going to the gym several times a week. Not bad for a 63 year old! lol
I know it will have come as a bit of a shock, no one expects it (just like the Spanish inquisition!)! It is something you need to get your head around, but we have several people on here who are also peer volunteers who are willing to give you the benefit of theri expereinces, and there is also the peer buddy scheme where you can speak to someone else on the phonewho is living with the condidtion if you would prefer to talk to someone rather than do it on here.
keep your chin up, and keep positive. Keep in touch and let me know how things go.
Regards, Tony
Hi Satelite, I am also one of the forum volunteers. Myeloma is not a well known condition so I am not surprised that yo have not heard of it before. I am sure that it has already been said, but a lot of blood conditions are very similar to each other, and of course consulting with the internet can sometimes scare the life out of you!
The only way that I had my Myeloma confirmed was to have a bone marrow biopsy taken from my hip. I know its easy to say, but please don`t worry unnecessarilly about what it might be, wait until it is confirmed and then you can get a plan of action as to what they think is best.
Even if it is Myeloma, there are plenty of us that have been around with it for quite a few years, and there are lots of different treatments available to help you with it. It is not automatically doom and gloom. Keep your chin up, and stay positive.
Regards, Tony
Dear Slimynose,
Thanks for getting in touch. I am really sorry that things do not seem to be going your way at the minute. I havn`t had DT-PACE so I cannot tell you much about it. I have not heard of anyone else whose Myeloma is resitant to treatment.
I know you probably have, but have you tried talking to the children openly and honestly about what you have and what you need to go through? and that it is necesary for you to go into hospital to try to get better? Kids are more resilient than yuo think! There may well be counselling available for children to help them cope, have you looked at that?
I know it has been a setback when you thought you were doing so well, but please remember that the medical staff will always act in your best interest and they will recommend things which they think are for the best.
Have you tried coping mechanisms for yourself? I have always said that dealing with cancer is as much an issue in your head as it is in your body. You have to try to look after your own mental health.
There is always hope although it is likely that more treatment is required, but keep your chin up and keep strong. Please keep in touch and let me know how you get on.
Regards, Tony
Hi Jiffie,
I am also a forum peer volunteer. I echo everything that has been said already. Before SCT I had terrible night sweats. I was absolutely drenched in sweat, which then made me very cold so I couldnt sleep. These dissappeared after SCT, and I would definitely have it done again should the need arise.
If you have a fridge/freezer in your room, I found having plain yoghurt, ice cream and ice pops to suck a good way of refreshing me and getting some sugar inside me as I was off eating altogether. As others have said previously, it is bearable, so good luck with it and I hope it has the desired effect.
Regards, Tony
Dear Chickenwing,
I am really pleased that you have at least decided to go for the harvesting. Have you been told how it works? If not, let me know and I will tell you what procedure I went through.
You do right to take things one step at a time. The good thing about harvesting is that they keep your stem cells in liquid nitrogen and they last for years, so if you decide to not have it after you have had the harvest, and then change your mind at a later date, they will still have them and they will be viable. However, I would really think about that carefully as the older you get, then that might cause a reduction in the effectiveness of the treatment. Also once you get to a certain age, that might have a bearing on whether they will still offer you the tratment. I was told that I was in the right age bracket for STC, which seems to suggest that had I been outside that bracket, they might not have offered it to me, but I would check that with your specialist nurse.
Please remember that the side effects whilst unpleasant are temporary. Following STC my cancer has been inactive for over 2 years, and for me, going through the unpleasantness was worth it in the long run, but obviously the choice has to be yours.
Stay safe and well and please let me know how you get on. If there is anything else I can help with, please let me know
Regards, Tony
Hi Slimynose,
I am one of the forum peer volunteers, I was just wondering how you were progressing with treatment etc. If you would like to, please leave a message and let me know how you are getting on.
Regards, Tony
After having STC myself it appears to me that we all respond differently to the treatment. Mine was 2 years ago and I can now lead a relatively normal life. I still get tired in an afternoon, but so long as I pace myself and accept that it will happen I can enjoy life again.
Sorry I can`t help with the presents idea as I am not very good at that kind of thing, but there is hope, and things will get better! Had I not had SCT, I am told that I would not be here now, so for me everyday is a bonus, even if its not a particularly good day healthwise.
Regards, Tony
