Yesterday I hit the milestone of 10 yrs post SCT 11yrs from being diagnosed with mm at 53 yrs old I Have been 9 yrs free of all medication apart from antibiotics for occasional chest infection. Present PP level is 4.5 all other blood results ok. I am posting this to give hope to anyone newly diagnosed. Stay positive listen to your medical team and try and carry on a normal life.
Regards to all Nick
NIck that is fantastic news and long may it continue. Thanks very much for sharing – we all need to hear positives along the way for a much needed boost
thanks for your post regarding 10 years; but you’re a bit of a newcomer mate! Only joking… yours is a brilliant story. I said “newcomer” tongue in cheek, because some time back I read the story (on the U.S. myeloma beacon site – that I also follow), concerning chap called “Gary H”, who now has survived 19 years with MM – you may also have read it? He’s obviously had ups and downs, and I attach an MS WORD 97 screen dump for everyone to see if they’re interested. I had difficulty searching Gary’s post because it was some time back, and the interesting extract I’ve included is nested in loads of pages, so I just did the screen copy — but if you’re interested in the link, I’ll try and resend it, because it didn’t work the couple of times I tried.
Well done again.
<p style=”text-align: left;”>Hi Peter</p>
<p style=”text-align: left;”>I know there are many with mm who have survived much longer than I have. I consider myself very lucky that I have had very few issues compared to others who are posting on here.</p>
<p style=”text-align: left;”>My post was to give those newly diagnosed with mm hope for the future</p>
<p style=”text-align: left;”>Regards Nick</p>
<p style=”text-align: left;”></p>
Sorry Nick, I’ve no idea why this has happened; all my uploads are scanned by Norton (expensive these days), so perhaps this web site doesn’t like data sourced from beacon? Just kidding. I’ll now review the link.
At last. If this link sends you to the wrong place (the URL is correct), it’s page 2 of the post, and about half way down. You can see that the novel drug approach have kept him going for 15 out of the 19 years, but not without cost. And I’m surprised that his private insurance provider has met the deal for this lengthy period. Having worked for the Americans and Canadians, I know what their insurance providers can be like. Go to the Gary H posts, cos there’s a lot of other stuff surrounding his posts.
My particular form of MM is light chain. And this can be tricky at times and doesn’t matter whether previous SCT(s) have or haven’t taken place. Reason being that relapse into kidney failure can take place relatively quickly; so the whole issue requires regular and accurate monitoring, which I’m doing, with my excellent lady consultant and specialist oncology nurse at Queens Hospital in London. The PP version of MM can of course have some painful and very damaging outcomes – but often, it seems to me, that progress to vital organ failure is not so immediate, but that’s my perception and I might be wrong, since I never studied medicine at uni.
Many thanks again for your post, and best of luck for the next 10 years Nick.
Thanks for the link. After reading his story seems he’s been through the mill. His attitude to the disease is like mine, no way was I going to give in to some alien invaders in my body. I have always had a positive attitude and trusted implicitly in my consultant and my team of nurses. This is an awful disease and no two people are affected in the same way but I feel a positive attitude helps in the fight against it
Keep strong everyone Nick
Well done Nick — a brilliant post. I’ll entry a diary marker for 3 March 2028, because I know you’ll be there.
I was diagnosed in 2000 at the age of 39. After chemo,radio and sct in 2001 and a few years of pamidronate I have been on no medication and been reasonably healthy until about 5 months ago. Up until three years ago I was getting my bloods checked every three months by my amazing doctor at the hospital but when he retired I was told to get them done by my GP every year. It took me 2years before my diagnosis to convince GP something was wrong so as you can imagine I’ve no faith in GP. My bloods were done in November when I started getting lower back pain again but they came back clear. Now the pain has started to wake me up through the night. The pain is not constant but getting it more often and now getting severe pain in my shoulder. Has anyone else had these problems?
Sorry to hear of your suffering. Like you I have no faith in my gp it took 6months of continual blood tests before referring me to hospital. I have my bloods done every 4 weeks and have a review with my nurse specialist 10 days later. My consultant has recently moved to another hospital but this routine won’t change. Can you not contact your team at the hospital to get checked? I have always been told if I think something is wrong call us and we will see you. If you’re getting bone pain it needs looking into sooner rather than later.
I did phone my old doctors receptionist at the hospital but she told me it’s all changed since he retired and I have to go through my gp. I’ll make an appointment and go and see him.
Thanks for your reply
A gp is likely to see only one case of mm in their working lifetime so won’t be up on symptoms etc.
You need a full mri and possibly ct as well to fully assess your new symptoms. There is no reason why your go can’t order this (urgently).
Have you been seeing a myeloma specialist centre or just a local geamatoligy unit??i have felt much happier with the specialist myeloma unit I go to. Everything is more professional. The only drawback is it’s further to travel and the waiting time in clinic is long!!
Good luck. Let us know how it all goes.
Ive had my bloods done at gp surgery and the nurse practitioner has told me they are fine and to come back in a few weeks if the pain is still there. Since my brilliant doctor retired from the hospital I was told just to go to gp if I had problems and to get my bloods done. They’re not keen to refer me to the hospital and they won’t send me for mri. My daughter is a vet so she’s coming to gp with me to see if she can get through to them. I’ve been very lucky and been pain free all these years so I just want find out what’s going on and mri would put my mind at rest. No I don’t see any other myeloma specialists.
Thanks for getting in touch
Have you and your daughter been to see the gp yet??
I hope they have listened to you.
Please let us know how it went.
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