Hi,
I'm Stu and I was recently diagnosed with Multiple Myeloma.
I am or was a platelet donor, I donated in January with no problem. In February I had a phone call from the blood donor centre saying my red blood cell count was a bit low, not low enough to warrant seeing the doctor about a blood test, improve diet and come back in 3 months. Went back and my iron levels were out, my blood drops in the copper sulphate didn't drop. The nurse told me to go to the doctors for a blood test which I did. Blood and stool samples were tested, stool test OK, blood test not so much.
During that few months before going back to the donor centre I got promoted at work, completely out of the blue, but dead chuffed. Then..........
Had an appointment arranged at hospital with the heamatology consultant who said I needed a bone marrow biopsy and MRI. Biopsy was done about 4 days later, MRI a bit later.
The result of the biopsy was MM, 85% cells affected. Oh and by the way, there's no cure. That bit really got my wife, didn't do me much good either.
So you've got 2 choices, first DVDT intensive, 4 months chemo, stem cell transplant, 2 months chemo. Second choice clinical trial that you need more tests for before knowing if you can go on it. My first thought and the one that prevailed was intensive DVDT. It's been found quickly, The consultant said I'm young (just turned 60), fit (relatively) and I'm sure I heard devilishly good looking (but I might have been thinking he should have finished the sentence off with that), it made sense to me to get on with it and see if we can get a grip of it quickly as well.
I'm in my second week of my second month of chemo. Reading some other people's experience I think I'm getting away with it! I have a bit of fatigue mainly towards the end of the week. I'm still working full time though. I have had some mild side effects apart from fatigue, like pins and needles every now and again, mainly in my hands, constipation on the days of and after either Dara or Dex, not sure which causes it. I'm also a bit shaky every now and again, I haven't had to half fill my drinks because of it but it is sometimes quite noticeable.
So all in all, quite the year, promoted, a few months later here have cancer, that'll teach you!
I did struggle a bit before the treatment started with the whole no cure bit, especially because I had no symptoms, but I think I've got a grip of myself now. I said to my wife that if he wasn't dead I was waiting for Jeremy Beadle to pop out and go "only joking!"
Anyway, it's here, we'll get it sorted and get on with life afterwards.
The nurses are fantastic, the treatment seems to be going well. My numbers improved in the first month and my MRI was "unremarkable". That was the first time I was happy to hear a test result was unremarkable!
Side effects are not too bad so far, so long may that continue. I've got an appointment tomorrow to discuss the stem cell transplant so that should be interesting.
My wife is getting better with it now she's heard there has been improvement, my kids.freaked out initially but they both visited after the diagnosis and are a bit, not happier, but less worried I think. I think they heard cancer and thought I would shuffling off this mortal coil quite soon.
Sorry, that was a bit of a ramble but it still amazes me how up and down a year could be.
I think if there's anything useful for anybody with a new diagnosis in my rambling blurb, it's to read the posts on forums but always remember that they are not you. Many people have said it affects everybody differently and like I said earlier, after reading some other people's experiences with MM it made me feel like a bit of a fraud. You just have to take what's thrown at you and listen to your body, if it says rest, do it. If it says take the dog for a walk you lazy git, do it!
I think the Thelidomide might have beaten the Dex now so it's probably a good time to knock it off and get to bed.
If you got this far, thanks for reading.
Cheers, Stu
Hi Stu Stubee9f725d and a warm welcome from me.
It’s good to see that Kevin Vespa has picked up on your post…… nothing better than connecting with others who have navigated the exact same journey,
I don’t have Myeloma …… but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) ‘incurable’ but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. I eventually reached Stage 4a in late 2013 when I turned 58….. when a second, also rare but aggressive type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Your post is great…… and demonstrates a significant positive platform to move forward from.
Our daughters were 14 and 18 when I was first diagnosed… I actually continued to work for 12 years in a demanding teaching job and yes had various skin treatments over these first 14 years then when my second type appeared in late 2013 this week initiated 2+ years full on treatment.
As I was having to be treated for two very rare, significantly different types of T-Cell this was going to need an aggressive approach…… we did have a very stark conversation with my Consultant about the future…… basically we were told that if the plan put in place did not work I would have 2-3 years on the clock as this plan was the last roll of the dice.
……. about 800 hrs of chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants (June 2014 then Oct 2015)……. I was told that my first SCT failed on Christmas Eve 2014…… so I went back for my second in Oct 2015…… but it took until Set 2017 to eventually be told my Whole Blood Lymphoid and Myeloid Lineages were 100% Donor…… so SCT had worked.
As a family we had a long term view…… there was always hope until hope riling out….. to emphasise this, over the past 10 years after my last throw of the dice there are now a few new treatments that have come online so I have a fall back if required.
The long view is important…… we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 last week and I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.
Always around to help more or just to chat.
