Hi Shamrockgirl,
I am one of the forum volunteers and have MM. I am sorry to hear of your diagnosis, but there is a good chance that it might not go on to full Multiple Myeloma. In my experience, fatigue is par for the course with the disease even at the smouldering stage. Could I suggest that you use the ask the Nurse facility on this site, as obviously they specialise in the disease and might give you more information. Let us know how you get on.
Regards, Tony
tony642.
Hi Tonyb,
I am one of the forum volunteers. I had a STC almost 3 years ago, and since then I have not had any active cancer, although I am tested every 3 months for signs of it returning. It is laying dormant so does not give me any symptoms and I am not on any kind of maintenance treatment.
The STC itself is not a pleasant procedure, but for me it was entirely worth it and Im glad I had it. It has to be a personal choice, but for most people it is a life-extending treatment. I would suggest you discuss it with your medical team. However, as you say you are at the upper age for which treatment is offered, so if you decide to not have it now, you might not be given another opportunity in the future.
This is a scarey time for everyone that goes through it, but there is support available at every stage. If you need any more information as to what STC entails, and what effects it has, so that you can make an informed decision, please let me know. Don`t forget that we have the peer buddy service where you can talk on the phone or on zoom with someone who has already gone through it if that would help.
Let us know what you decide to do.
regards, Tony
Hi Znab,
Unfortunately, I do not know anything about the programme you have been on, but I just wanted to say that I am really pleased for you that it has gone well for you. The tiredness will probably reduce as the chemo reduces in your body and you readjust to life without it. This is just another success story for the new lines of treatment being made available to those with the disease. Although there is no cure for it, there are many lines of treatment now authorised, or studies taking place with new treatments to help those with MM live relatively normal and productive lives, and you are a good example of that.
Stay positive and keep your chin up, and let us know how you get on.
Regards, Tony
Hi Mervyn,
I am one of the forum volunteers. I had a very similar initial experience to you in that I was diagnosed with MM after collapsing with 2 vertebral wedge fractures and then had a stem cell transplant almost 3 years ago. Funnily enough, I was a pilot as well!
It sounds like you have gone through a lot caused by the disease, and you are still having problems, but as you say, you are still here 8 years later and grateful for it. It sounds like you have a very positive approach to what you have to deal with. I am sure your story will be an inspiration to others that being diagnosed is not necessarily the death sentence that some people think, and that you can still lead a happy and fulfilling life, although I do recognise that you have ongoing problems.
We are here to help and support you in any way we can so please keep in contact and let us know how you are getting on. Stay positive and keep your chin up!
Regards, Tony
Hi Louise,
They say that no news is good news, so if they haven`t found anything definite, then there’s a good chance that there is nothing serious there to find! You just have to keep at it and wait for the results and in the meantime try and put it out of your head, although I know that this is easier said than done.
Keep your chin up and stay strong.
Regards, Tony
Hi Louise,
I know this is a really scary time for you, and the worst thing is not knowing what is happening, but on the other hand, because they have not been able to identify what the problem is, it is good in one way, that if you had full-blown MM, it would have shown up straight away. Therefore as they are unable to determine exactly what it is, that hopefully will give you some comfort that it is hopefully nothing serious to worry about!
I found that the more I knew about the disease, and the more information that I had, the better it helped me deal with it in my head. And I suggest that if you think of a question or an issue to discuss with your consultant, write it down as soon as you have thought of it and take a list of things with you to ask when you see them, otherwise I will guarantee that you will forget on the day.
The hard part is the waiting, but there is nothing you can do but wait! Try and take your mind off it with distractions, I know it helps to try and get it out of your mind for a while.
Keep your chin up and try and stay positive.
keep in touch.
Regards, Tony
Hi there,
It is good news about the MGUS diagnosis, it is unlikely that you will go on to develop full-blown MM, so try to put it at the back of your mind (although I know that’s easier said than done) and live a normal and full life. You will probably have regular checks to see what level of paraprotein you have in your blood and the ratio between the Kappa and Lambda light-chains, but fortunately these are done in a blood test, not a bone marrow biopsy. If there are any indications that the disease is progressing, then they can take early action to deal with whatever is happening, so that is a good place for you to be.
Please let us know how you get on and if we can help in any other way.
Regards, Tony
Hi Smarty,
I am one of the forum volunteers. Myeloma can come in various forms, MGUS (which is the pre-cancerous stage), smouldering Myeloma where you have the disease but it is not active, and full Myeloma where it is active. It depends on which one you have as to what is likely to happen.
With MGUS (which stands for a long medical name) and smouldering myeloma, there is a good chance you will not progress beyonf that to get the full disease, or even if you do, it might be years away. They will be testing you on a regular basis to look for changes. Only when they see changes will they take action. So long as you are asymptomatic and the results come back good, then you are in a good place medically.
it is not surprising that you were shocked by the diagnosis, I have full Myeloma and was not aware that I had it so i know what it feels like. The advice you have been given is good advice. So far it sounds like the disease had not progressed significantly, and so long as it stays like that, you will probably not even know you have it. More good advice is to take things one step at a time. I know it will be a big deal for you and you will have to come to terms with it, which might take some time.
Even if the worst happens and the disease develops, it is not the end of the world. Although at present there is no cure for the disease, there are some very good treatments and a lot of people go on for many years to live active, normal, and fulfilling lives. Support of family and friends is very important to get you through these early stages, so don`t be frightened to tell people what the issue is.
There is lots of help out there for you. We are always happy to help in the forum, and if you would like to speak to someone either who has the disease, or is at the same stage you are, we can arrange for you to do so on the phone if you refer yourself to the peer buddy scheme. There is also an excellent As the nurse facility on this site should you have any medical questions or need advice that only a medical practitioner can help with.
Furthermore, there are some good videos and webinars on this website that cover all sorts of aspects. There is a very good one that explains what smouldering Myeloma is, and another one about the psychological aspects of Myeloma. However, as it covers all aspects, there is one about end of life, so I thought I had better tell you about it so that it did not surprise and shock you when you see it. This is something for you which is probably donkeys years away.
So there is a lot there to help you get your head around it. I found that the more that I knew about the disease, and the better I was better able to understand it, helped me with acceptance of it.
Please keep us updated as to how you progress, and if we can help in any other way, do not hesitate to let us know.
Keep your chin up!
regards, Tony
Hiya Louise,
Thanks for the reply. To be honest I dont know what Beta 1 and 2 are as I have never come across them before. I went straight into full MM so if they refer to MGUS or smouldering Myeloma, then I wouldnt know about them. There is always the Ask the Nurse facility on this website where you can ask what you want and they will get back to you with the correct information. If you are not getting what you need from your medical team (have you been given the number of a specialist nurse to contact?) then I can recommend using this to put your mind at ease.
As for what I do on here, it really helps me to know that I am using what I have learnt and what experiences I have had to be used in a positive way to help others following what was a quite difficult time in my life. I was a few years ago where you are now, and if I can help you through it with moral support and encouragement, then it somehow seems like getting cancer was not all a bad thing. That probably sounds weird, and I probably haven’t explained it very well, but in short, all of us on here and at Myeloma UK are here for you when you need us.
Please continue to let us have updates. Keep smiling!
Regards, Tony
I hope this hlps, please let me know how you get on.
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
