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
Hi SMJ,
How are things going with you?
Regards, Tony
Hi AC, I am glad that the comments on here have helped you come to an informed decision. I hope everything goes well for you. One of the side effects of high-dose chemo is mucositis, which is inflammation of the mucus membranes in the mouth, throat, and trachea. I suffered quite badly with this. I have been told by someone on here that if you suck an ice cube constantly for half an hour before and after the chemo injection, it reduces the effects. I cannot say for certain if this works or not, but I would suggest that you should give it a try. You should have a fridge in your room with a small freezer compartment.
Please keep us updated as to how you get on.
Onwards and upwards!
Regards, Tony
Hi SMJ, I am one of the forum volunteers. I think it is fair to say that we all react differently to some things, but if you have high-dose chemo (Melphalan for example) you can expect to have diarrhoea, nausea, and vomiting to some degree. You can also expect mucositis which is inflammation of the mucus membranes. I suffered quite badly with this, but I have been told if you suck ice cubes for half an hour before and after the chemo injection, it reduces the effects of it.
Your immune system will be compromised when you get home so you will be on a neutropenic diet. You will receive information from the hospital as to what you can or cannot eat until your immune system recovers. Do you have anyone that can do things like go to the shops for you, because to be honest, you will probably not feel like doing it yourself? Does your local council have a Ready for Anything scheme or something similar where volunteers can give support such as that to those in the community who are not able to do it for themselves? I do that kind of volunteering and have been sent out several times to shop for someone, particularly when they were isolating during the pandemic.
I had STC nearly 3 years ago and my cancer has not been active since then, so for me, it was worth it. I hope you go through it the same with the minimum of side effects. Please let us know how you get on.
Regards, Tony
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
