Dear Maggie,
Well done. That’s a fantastic result. And congratulations to everyone involved.
Kind regards,
Peter
Hello JGJ, really sorry to hear about your dad, and yes it’s a complete shock for everyone, including all his nearest and dearest who are close and take an active part in his care. I was diagnosed back in the summer of 2015, and my lovely specialist nurse gave me a Macmillan organiser. It’s a fairly thick diary type book (free) with lots of useful info in. I used it to track the side effects of the chemo and support drugs. It’s a bit of a chore, and in my cases, initially there seemed to be little pattern in the number of “good days” when I could actively do lots of exercise and frankly enjoy life. But overtime it became an invaluable aid and I used it every week! I don’t say to use this in the presence of your dad, because as said above, this may not be the best approach at all. But it might be for you? Also if you dad has a treatment cycle, and he doesn’t feel quite right, you might say to him that it’s because of the treatment and nothing to do with the disease getting worse. I know this sounds obvious, but I know several people, early diagnosed, that thought it was MM getting worse. Yes, it’s a long haul, but there are some amazing posts on this www, regarding the effectiveness of the treatments and long (very long) periods of remission. The very best wishes to your dad and all the family, and the very best of luck with his treatments. Peter
Hello Mike J, I’m sometimes in awe of the posts that MM patients supply here — and yours in such a one. And yes, the Drs DO get it wrong, as your post diagnosis activities describe. I’m not going to say take it easy regarding lifting bags of cement (I know they’re heavy), because you’re obviously in your element and enjoying every minute… And long may it continue mate! As far as the new car’s concerned: I was a bit big (before MM) and I got a ride in an MR2, I think it was. And, yep, the only embarrassing problem was getting out of the ######. My son laughed his head off! But a low slung Jag should be okay, but obviously try it first.
Thanks so much for your post – it’s better than a tonic! The very best of luck.
Peter
Hello Scott,
flcs at 108 are pretty low. I would think that the hospital never contacted you because of this, what I think, is a reasonably “low level”. I’m not sure whether you have kappa or lambda flcs, and if you look at the “healthy” range that would be pinpointed by a blood test, the lambda version has a max value of around 30. I’m away from home at the moment, no papers, so I can’t remember the units, but they’re something like mg of flcs per litre of blood analysed. But pse check, because I can’t accurately remember. The problem with this type of mm is that the criteria for relapse is, in my opinion, quite confusing. The international working party on mm has defined it, but I think over complicated the whole issue. And here comes the rub… As far as I can see, hospital consultants (and I have a very good one at Queens in London), and have spoken to previous consultants, use a much more pragmatic approach, based on experience, other tests and the general well being of the patient. Based on my personal situation, a flc figure of 108 would not be considered, in any way, serious, but would also depend on the other factors above. Once the figure starts to drastically climb, quickly, would be a cause for concern. Because, unfortunately, in some cases this can happen. But we’re all different. Flcs can settle in the hundreds and be stable over long periods. But frequent checks may be advisable. So, I really wouldn’t worry at all about your levels. And please check (and sound out) with your consultant what I’ve posted here. Like mm patients being all different — so are consultants — and I’ve only had experience of a hand full, so you need to test out, and have an understanding with yours, related to your particular situation. Very best of luck,
Peter P.S I’m using an iPad and hope there’s no clash with predictive texting. Unfortunately on this URL I find it impossible to revert back to nested text and correct misspellings.
Well done Nick — a brilliant post. I’ll entry a diary marker for 3 March 2028, because I know you’ll be there.
Peter
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.
http://www.myelomabeacon.com/forum/19-year-survival-after-multiple-myeloma-diagnosis-t8008-10.html
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.
Peter
Try again..
Hi Nick,
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.
Peter
Hi B/Steve,
I’ve just finished the first cycle (3 weeks) of VFD (20mg Farydak, 6 times, over the three week period). I had ECGs to check the Farydak’s heart effects – all ok. But I did have serious bleed problems, after the 6th (last) capsule, which meant a visit to A&E. I had a mtg with my excellent haematology consultant a couple of days ago, and she told me my blood platelets (that provide clotting) had reduced from a count of 140 down to 20! Which explains the bleeds. All bloods are being closely monitored, and I’ll post any new information in weeks month or so. Good luck to you, and regards,
Peter
Hello,
Yes, it’s a complete shock to the individual and their family when MM is initially diagnosed. But take heart, and although dealing with MM is a long haul process, as the post above says, there are lots of drugs… and similarly I chose this latter path rather than an SCT, since my health wasn’t that great prior to the diagnosis, and was advised against an SCT. My version of MM is the lambda free light chain type, and I can only say that the VTD treatment completely blasted the MM nasties, and within a couple of months the FLCs were down to the permitted range for a healthy person. I personally never felt sick, or had any PN (tingling in hands and/or feet), but I did suffer badly from diarrhoea. But it’s a smallish price worth paying I believe. All the very best to your dad and family, and as the post says, “let us know how he’s getting on”.
Peter
Hello again Susie – the topic related to the use of curcumin has been previously discussed at some length in this treatment section, about 2 months ago, and can be found in Micheal Aston’s initial post entitled: “curcumin case report”. Which, along with the subsequent posts is well worth a read. Hope you find it so…?
Happy new year to you – Peter
P.S. We have a supply of curcumin, sourced from the U.S. It’s a very fast, cheap and efficient delivery system, and later, if you’re interested, I’ll ask my wife (Val) to post the details for you.
Hello, very sorry to hear about your son – who is VERY young to have MM diagnosed. But I have to say that the VTD (Velcade, thalidomide and the steroid – dexametasone), can have an exceedingly GOOD outcome regarding the MM nasties. I had this combination several years ago, and the light chain version of MM that I have – was frankly blasted by the VTD treatment. In fact it was so good that at one stage my lovely lady consultant, jokingly remarked, “I wonder if there’s been a mis-diagnosis!” Unfortunately there’s not, but in simple terms – the VTD option can be remarkable, and works with a very large number of patients. May I wish your son (you and your family) my very best wishes for the New Year and future good health.
Peter
Hello Adrian,
Thank you for your sentiments and words…
Peter
Hello Maureen, it’s very sad to read Ian’s story (your post – 21/12/17), and my sincere condolences to you and your family. And I note what you say regarding yourself getting a clearer picture of Ian’s last set of treatments. In my experience MM consultants do their very best to sustain and improve the life quality of their patients, and I know that the FLC MM version can be very unpredictable – however if I were you, I would (for your peace of mind) query the timescales for Ian’s treatment. Reading your numbers: you say his last treatment was 2 June (his LCs being 186). I would have expected a slight improvement or modest increase in the following month – and you say they increased to 385. Certainly an increase but not a serious number (385) to worry about – in the total scheme of things. You add that the consultant was happy with Ian’s kidney function? Could I ask whether his assessment was based on creatinine/eGFR blood test measurements, or some other method? And do you know what these values were at this point in Ian’s treatment plan?
You say Ian then had a urea test a week before and his kidneys were still good. And although the FLC version of MM can be unpredictable, for the LCs to then rise (very significantly) to 5000 in such a short space of time seems a bit odd? — and I’m not surprised his kidney function was seriously affected. Can I ask whether the 5000 figure was at the end of the ‘no treatment’ 3 month period. Lastly, I hope in the new year, you get the answers that you need (for your peace of mind), and that you and your family have a much better and happier 12 months next, than the previous year.
Peter
