I am one of the peer buddies that speak to people like yourself. There is a team of us. When you apply the person who co-ordinatrs it tries to match you up with womeone who has already gone through what you are going through, and you can get the benefit of their experience.
To find the link, scroll down the website, and on the left you will see a box saying ‘get help’. In there, click on ‘Peer Buddy Service’ and it will tell you what it is all about. If you think it could help, click on the ‘Peer Buddy Referral Form’ and fill it in. You will probably be connected with a lovely lady called Denise, who will match you up with a member of the peer buddy team who she thinks can help you the most. This is called triage, and the person you speak to will know exactly what you are going through as they will have gone through something very similar themselves. I wish you luck.
Kind regards, Tony
I am one of the peer buddies who speak to people like yourself. There is a team of us. When you apply, the person who coordinates it tries to match you up with someone who has already gone through what you are going through, and you can get the benefit of their experience.
As ofr treatments, 25 years ago there were none for Myeloma, but things have come on tremendously since then, and there are now lots of options.
They are called ‘lines’ of treatment. You start off one one line, and maybe than go on to have a stem cell transplant, which will hopefully put you in partial remission, which means that no treatment is necessary. However, the nature of Myeloma means that it will come back at some point in the future, but yuo don’t know how long that will be. For me it was 3 and a half years. When it returns, then you go on to another line of treatment, and so on.
My cancer came back about 18 months ago, but I was given traetment to deal with it, and I am now on what is known as a maintenance dose of chemo, which just keeps a lid on it and it is quite stable now, so thats great as it allows me to do all of the things I want to do, and I can probably do 90% of the things that I ued to do before I was diagnosed.
If you struggle to find the peer buddy link, scroll down the website, and on the left, you will see a box called ‘get help’. In there, click on ‘peer buddy service’. In there it tells you what the service is all about and how it can help you. If you think you would like to try it, fill in the Peer Buddy Referral Form. You will probably be connected with a lovely lady called Denise, she will sort you out. If you have any problems, please let me know. I wish you well. Regards, Tony
I was in the same position as you with GFR of 4%. I had a stem cell transplant which worked really well and I am no longer on dialysis.
Tony
Hi there have you tried the peer Buddy system on the myeloma uk website? This is where you can get to speak on the phone or zoom to someone who has already gone through what you are going through and they can tell you how they live with the disease and the treatments and what coping mechanisms they have for dealing with it all. Highly recommend.
Tony
Have you tried the peerbuddy system on the myelomauk website? This is where you can speak to someone on the phone or zoom who has already gone through what you are doing. You can discuss how they are living with the disease and what coping mechanisms they have to deal with it all. I can highly recommend it.
Tony
Have you tried the peerbuddy system on the myelomauk website? This is where you can speak to someone on the phone or zoom who has already gone through what you are doing. You can discuss how they are living with the disease and what coping mechanisms they have to deal with it all. I can highly recommend it.
Tony
Hello lauror
I think the answer is that everyone is different, particularly with regard to treatment and how they respond to it. I don’t know if there is any specific advice that you are seeking, maybe thats a question for the ‘Ask the Nurse’ service.
I would say use common sense, listen to what your body is telling you, accept that you might not be able to do some of the things that you did before, or maybe not as quick anyway, but live your life as much as you can within those limitations.
Regards, Tony
Hi there,
I am on Lenalidomide as well, a maintenance dose of 10mg per day, although I was on 40mg a day at one time. I have 3 weeks on and 1 week off, and it is holding paraproteins and light chains down, so fortunately working for me.
Regards, Tony
Don’t forget that we have a Peer buddy system where you can be put in contact with someone who has had Myeloma for probably a few years and gone through the gambit of Chemo, Stem Cell Transplant, neutropenic diets, etc.
I am one of the peer buddy volunteers, but there are quite a few of us, both men and women.
Through our Peer Buddy service, we’ll match you up with someone who is a trained Peer Buddy, and they’ll be there to listen, understand and support you. You can share experiences, discuss issues you’re facing and get support from someone with lived experience.
It is a free service and you would be partnered up with someone as closely as possible to what you are going through so they can share their experiences and how they coped.
Peer Buddies will offer up to six sessions of support over a maximum of six weeks. People can receive support either over the phone or via video calls (on the video conferencing platform Zoom).
Support is available for both patients and their carers/family members, with patients supporting patients and carers/family members supporting carers/family members.
The Peer Buddy service is also available to people with related conditions, such as AL amyloidosis.
Regards, Tony
hi there, I was prescribed gabapentin as well, and it works really well for me. I have been on it for several years and it still continues to be effective gainst peripheral neuropathy.
regards, Tony
Dear 6iron2,
I am one of the peer buddies and have supported several people like yourself who are going through living with Myeloma. I can only say that the feedback I have received is that it is useful to speak to someone who has been told that they have cancer (which of course is a major shock for most people), diagnosed with the disease, and then gone through the treatment. Unfortunately, despite medical staff being fantastic at what they do, they cannot speak about this experience, only someone who is in the same boat as you can.
When you apply for the peer buddy service, you are matched with a buddy as close to your personal circumstances as possible so that you can get the most out of it. You normally have 6 weekly one-hour sessions on the phone or Zoom. You can always give it a try, and if you find it is not helping, you do not have to contnue with it. I would suggest that if there are things that you are struggling with, give it a go, you have nothing to lose!
regards, Tony
I was diagnosed after collapsing with 2 vertebral wedge fractures. I had no idea that I had Myeloma. I also had complete kidney failure and spent 12 days on ICU and then 5 weeks in hospital. I had always been physically fit and had an active life. The confinement of being in hospital and not being able to do anything was killing me. Even when I got home, I was housebound and my capabilities were very limited. I felt I had no choice but to have treatment, specifically a stem cell transplant, as for me, for the rest of my life to be the way that I was, was not a life worth living, and therefore to not have the treatment was not an option. I am now almost 6 years post-diagnosis and do not regret having treatment one bit.
Regards, Tony
I have never known MM to be a secondary cancer, and I have never heard of anyone getting a secondary cancer as a result of MM. This might be a question for ‘ask the nurse!’
Regards, Tony
Hi Myelomamum
I was diagnosed 5 years ago after suffering 2 vertebral wedge fractures, I had aSTC but I knew my hair was going to fall out due to the Melphalan, so rather than the cancer taking my hair away, I did it by shaving my head the day before I went into hospital. I felt a bit stronger after that as I was in control of what happened to my hair. Only a smal point, but a big issue for me!
I was in remission for 3 and a half years but the Myeloma came back just over a year ago. Since ten I have been on lenalidomide with very few side effects and it is keeping the mteloma under control with paraproteins very low.
Keep your chin up, with new drugs and treatments being developed, there is a good chance that many living with the disease will live a lot longer than in years past.
Regards, Tony
Hi there,
I had monthly infusions of Zometa, and it made me feel generally rubbish and listless. I was on dialysis at the time so I don;t kno if that had an effect. However, I have to say that after a few months, I did get used to it and eventually did not suffer from any side effects. but I think you have to weigh up the positives and negatives, so is it worth putting up with the side effects for the benefit it gives you?
Regards, Tony
