Hi Louise,
First of all, do not think bad of contacting us again on here. This is what we do and we want to help so do not ever hesitate to get in touch if you need to.
It is obvious that you have gone through a lot in your life, but you are looking too much into your results and coming up with answers and problems before you even know what the results are.
Please stop looking for what it might be, and wait for the results and for your team to tell you what it is. Only then can you move forward positively with the correct treatment, and no matter what the results are, there is a lot of support available to you to help you through.
Please do not feel that you are bothering us, we are only too glad to help, but please remember that if you have MGUS or smouldering Myeloma, there is a good chance it will not develop into full MM, and even if it does, with treatment a lot of people go on to live normal and fulfilling lives.
Please do not get yourself wound up about something that might not happen. I know this is easy to say, but I have gone through it and I know what it’s like. What will help greatly is you having a positive attitude to dealing with it, and having hope.
Don`t forget that there is the peer buddy system available if you want to speak on the phone to someone who has been in the same situation as you. This might help if they could explain how they got through it.
Please keep us informed as to how you get on, and what your results are when you get them.
keep your chin up!
Regards, Tony
Hi Louise,
I am one of the forum volunteers. As has already been said, a lack of paraproteins is a good thing. I know the wait is agonising, but please don`t go finding things which you will worry about and you might not have! If it is determined you have MGUS or even smoldering Myeloma, there is a good chance it will not develop into full MM.
Wait for the results, then discuss them with your medical team as to what options are available to you, or even if you actually need any treatment at all! I would suggest you write any questions down before you speak with them as you are likely to forget what you wanted to ask when you are with them.
And even if it does develop, you have already heard that with treatment, a lot of people go on to live for a long time and have a good, normal life. I am one of those having had a stem cell transplant almost 3 years ago with no detectable signs of cancer since then. Therefore it is not all doom and gloom, what you need to do is stay positive.
Please let us know how you get on.
Regards, Tony
Hi there,
I dont know if you saw it or not, but there was a very good webinar about MGUS on the Myeloma site a couple of weeks ago. It explains exactly what it is, and explains the likelihood and pathway of it possibly developing into full MM. I can recommend it to you, I certainly learned a lot as I did not go through t MGUS stage because I went straight to full MM. You can find it and all the other videos) on the homepage listed undervideos`.
I hope these help.
Regards, Tony
Dear heathermullen,
I know it is difficult to stay positive in your circumstances, but that in my opinion is one of the most things you can do to help you through and cope not only with the disease but the treatment as well. If it helps to speak to someone, don`t forget you can refer yourself to the peer buddy system where you will be put in contact with someone who has gone through a similar experience who you c speak with on the phone.
Remember, you are not alone!
regards, Tony
Hi northumberlandces,
I have just had cruise insurance for a week for myself and my wife with Staysure insurance. I have heard from a lot of people who have had good deals from them. They seem to be Myeloma friendly.
I am in remission and my wife has heart problems, but they covered us for a week for both of us for £135! It might be worth trying them as I agree that the quote you have been given does seem very high. let us know how you get on so that we can advise other people in similar circumstances.
Regards, Tony
Hi ree2112,
I am one of the forum volunteers. Just to reiterate what has already been said by others, please do not think you are boring us at all, that’s why we volunteer to come on here and hear stories like yours and offer whatever we can to help you though by knowing that there are others like you out there that have gone though similar experiences.
The news you get about it coming back is very disheartening, but always remember that there are other lines of treatment available which may be an option for you. There is always hope, keep your chin up!
Regards, Tony
Hi Dave,
I am one of the forum volunteers. I was diagnosed 3 and a half years ago. I know exactly what you mean about the mental health issues as I have been through them. What you have to remember that although it is an incurable disease, it is controllable. I cannot comment on the RADAR trial, but I had complete kidney failure and needed dialysis, then had 6 rounds of VTD (so I know what dex is like!) and then I had a stem cell transplant. I am know in what they call remission (although it is not a true remission) and have been for well over 2 years now.
The important thing for me is that I can live a very nearly normal lifestyle and get on with doing the things I like to do. There is always hope and it is important to be in a good and positive headspace, although I know that this is difficult sometimes. This is where we can help tptry to keep you in a positive frame of mind (if you want us to!). please let us know how you get on and what you decide to do about treatment and the trial.
regards, Tony
Hi there,
Your medical team should be able to give you yuor GFR to say how your kidneys are doing if you ask them to. Be aware that sometimes they give you an estimated GFR, and sometimes it is an actual figure, it depends which formula they use to calculate it.
There are websites available on the internet where you can calculate your own GFR. All you need is your creatnine reading from your last blood test, plus other stuff like height, weight, sex, etc. I have compared their figures to those I have received from my consultant and found them to be quite accurate.
My kidneys were so bad I had to have dialysis as they had completely failed, but I know that at my hospital, they don`t look at putting someone on dialysis until the GFR is below about 9 or 10%, but this is variable between patients.
I know you think you are on a journey into the unknown, but a lot is known about Myeloma, and also the treatments for it. There are some very good treatments available and some excellent results have been seen from them. Keep your chin up, and don`t forget that we are here to be there for you.
Stay srong.
Regards, Tony
Hi Lottie,
I am also one of the forum volunteers. I know it must have come as a shock to be diagnosed, but as has already been said, although it is incurable, it is very treatable.
Not everyone gets offered SCT. I think there are a number of factors for the decision, but I think age is a major one. I don`t think may are offered it over 70, so if you have been offered it, I think you might take into consideration that if you say no now, they might not offer it again in the future!
I have to be honest, SCT is not pleasant, but I had mine 2 and a half years ago and I have had no detectable paraproteins since, so for me, it was worth it. My disease was so advanced when I was diagnosed that I was given a prognosis of 6 to 12 months without the treatment, so for me, the decision didn`t take any thinking about.
Many people have gone on after treatment for many years to live quite a normal life. I would discuss any worries you have with your specialist nurse, and dont forget that there is theAsk the nurse` facility on this website under help and support.
Please let us know how you get on and what you decide to do.
regards, Tony
Hi ac,
I had STC but did not get any rash. Have you asked your medical team? You could always Ask the Nurse section on here who is a specialist in Myeloma and I am sure she would be helpful. You will find the link under Help and support on the main Myeloma UK webpage.
Sorry I couldn`t be of more help.
Yours sincerely, Tony
Hi Ree2112,
My diagnosis was a bit different from your experience as I collapsed and ended up in A&E. Have you had a biopsy to determine if you have Myeloma? Are you on dialysis due to the kidney failure (do you know what your actual GFR is?). I have had Myeloma for nearly 4 years and suffered from complete kidney failure, but I have never had a scan on them yet!
We are here to try to help you through it, please let us know what happens and how we might be able to help.
Sincere regards, tony
Hi SMJ,
I had Cyclophosphamide and then G-CSF. I had virtually no side effects at all, apart from being very tired, which cleared up after a couple of days. If I were to need it doing again, I would not hesitate to have it done.
Regards, Tony
Hi Mariposa,
I am one of the forum volunteers. Have you had a biopsy because the medical staff suspect you have Myeloma, or just to rule it out? Whichever the case, I know it is not an easy time, but whatever yuo have heard about Myeloma, if the biposy shows that it is, there are lots of very effective treatments out there and some people go on to lead very normal lives for a lot of years.
Dont get too disheartened about it, most of us on here have been exactly where you are and know what you are going through. We are here to try and help you through, whatever happens. Please let us know when you get your results, and dont look too far into the future, just take things one step at a time.
Sincere regards, tony
Hi there,
I have just started travelling abroad, and I agree that Staysure were the cheapest company to go with, and although I have not made a claim, they seem a very good company to deal with.
My wife has heart issues and I have Myeloma in remission, but we were able to get cruise cover for the Med (including helicopter evacuation from the ship if necessary) for both of us for about £140 for a week.
Hope this helps.
Regards, Tony
Hi Twinz,
Sorry to hear about your problems, but as has already been said, this is a common problem with Myeloma. I had 2 wedge fractured vertebrae and also a tumour on my spine. I had nerve block injections into my spine which really helped to reduce the neuropathic pain. I dont know if it would work with your particular issues, but it wouldnt hurt to ask your medical team if it might be an option for you?
regards, Tony
