Linda, well done on such a good record after your sct. Perhaps one day, and not too long into the future, a modified and enhanced sct may finally be the complete cure to this miserable disease.
Rebecca: I think we’ve posted before. Looking at yours above, and I note your comments regarding your translocation and feeling ‘tetchy’. And I th…[Read more]
peterl replied to the topic What to read or find out at first? (Dads recent diagnosis) in the forum Newcomers 4 years, 1 month ago
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…[Read more]
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 mi…[Read more]
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…[Read more]
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 wor…[Read more]
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.
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…[Read more]
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 ag…[Read more]
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 w…[Read more]
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 -…[Read more]
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…[Read more]
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 kn…[Read more]
Rosie, so sorry to hear about your Dad, and my condolences to you, your Mum and all your family and friends at this time. From what you say, your Dad seems to have been fairly active until the last year, so whilst it’s no consolation, from the patients (like me) that I chat to in waiting rooms, it could have been a lot worse. So, I suppose i…[Read more]
Funny you should post this. I had 8 cycles of VTD (ended Feb’ 16) and four months later, I still had severe lower abdominal pains and diarrhoea. It was like constantly having a ‘bad curry!’ After loads of investigations: colonoscopy, CT Scans, samples… all these tests showed nothing. And no diagnosis is currently available. I…[Read more]
Ian: If you go onto Rev/Dex, please tell me how you get on. And just as important — have a great time in Cromer, and enjoy your fresh crab!!
Susie: Some very useful information regarding PP levels triggering treatment. I wonder if the value of 50 is uniform across all trusts? Be nice to think so.
Good luck all,
Your post says that while you have slightly a increasing paraprotein level, your light chains (LCs) at diagnosis – and now, are very low – effectively zero as you’ve said. In these circumstances I certainly wouldn’t worry regarding LC effects, and the niceties of the kappa/lambda ratio – which don’t seem to apply in your case. My s…[Read more]