'We can't tell you, you are all different' became such a standard response that I gave up asking what came next!
My cover is always to appear upbeat but I have found this not actually negative but no better than neutral approach to any difficulties or side effects added to my problems rather than helping.
I was diagnosed in June 2008, given all the info by my consultant, of whom I will hear no ill, with a support nurse in attrendance and sent home to start taking the pills the next day. Mercifully I had a cousin with me to help with the listening, as it is far more than one person can possibly take in at one bite, and take me home afterwards and visit every week with a 2 hour journey each way. Next day came and I took the steroids and all the support pills and was sitting looking at the Cyclophosphamides when my next door neighbour popped in to see how I was doing - 'Just wondering if I really want to poison myself' I told her. Well I did of course and the rest is history as they say but don't they make you go looking for professional, knowledgeable support. No indication of how one might respond, 'You're all different' started here. Never a squeak from the Support Nurse just surprise when I asked her about MacMillan Nurses, who turned out to be Hospice nurses, the first of which told me it was a bad time to be on my own and almost asked if I was sure I couldn't conjure a partner up from somewhere, well I probably exagerate but that was how it came across. Fortunately for me she had a jobshare partner who is delightful and truly supportive but it took a couple of months to find her. Merciffuly I live in a village which almost literally wrapped itself round me doing everything but cut my toenails and that only because I didn't ask!
I'm not going to list my side effects, maybe they were different maybe they weren't but they are in the past and I am in remission after five months of chemo. The one thing that still bugs me is the back pain, not as bad as it was but still there and needing constant analgesia and inhibiting my recovery.
I do think those of you who have gone forward to Stem cell Transplant are very brave, I have yet to be convinced - as I have been told it could extend my life by 18 months and at least 6 of those will be pretty unpleasant I feel inclined to take my chances on the treatment to date, we hear of people living 10-12 years on what is now well beyond its' useby treatment. After all research is ongoing and A P McCoy has just ridden his 3000th winner and donated £1,000 to Leukemia reserch and we get some spin off from that I understand.
What a miserable diatribe from one who claims to be upbeat but then you are strangers out there who can't actually see me. Good luck to you all, 2009 has to be an improvement on 2008 for those of us diagnoised then.
Ursula
FormerMember
Hello Ursula, Well, indeed, we are all different, and the treatments are all different, the docs are different, what they know is different, and it is an evolving, real time sort of thing with Myeloma. Being an orphan disease (1% of ALL Cancers - at least in the USA and 14% of the blood cancers), it has the potential down side of too many cooks in the kitchen, but the upside of many cooks working hard to perfect the treatment to move it from terminal, to manageable to cure.
My husband was dx in June 2008 and we just had our first stem cell transplant in December (and will have our 2nd in April 09). He sometimes would ask me how he compared with others who were being treated at the Myeloma Institute in Little Rock, Ark. Its natural to want to gauge how he's doing with others, but like you stated so well with your own experience, I didn't want to get into that game with him. Some did worse, some did better, but I really was just wanting to be concerned with him and how he was doing. I could say its a tough disease, but generally speaking, its just hard to be sick period and feel like crap with no end in sight.
I hope that your back begins to improve for you. We have a Myeloma group here you can join if you wish and there are some links there for information and of course if you have any to add it would be appreciated.
Everything that has been said about "we are all different and will react in different ways to our medication" is of course true. I am a firm believer that just as efficacious as the pills is a healthy diet with supplements as needed. This coupled with a positive attitude probably has just as much benefit as the medication.
However what is not so different in our cases is (1) the back pain (2) the community support and (3) the medical approach along the lines of " here is the chemo - make sure to take it."
I have got used to being four inches smaller than previously, but I just can't get used to the pain in the lower back . I get tired on my feet with the back ache and need sit around a lot!! I do have morphine as and when needed (it is not habit-forming honest) and if your pain becomes unsupportable perhaps you should ask the doc for some narcotics!
Like you I benefit from a supportive local community....so much so that I can't nip out to the shops without usually being approached by at least two friends and neighbours asking for progress reports etc.
Finally , like you, I believe the medics do an excellent job in a very limited sphere. All they can do is look at ,and treat ,the disease. It took me some time to get other holistic support and information about diet, exercise, lifestyle etc. which is essential. A good place in the UK for this sort of support in the Penny Brohn Centre in Bristol. I cannot recommend it highly enough!
I am off for the stem cell transplant next week....but I don't feel particularly brave becasue I don't see it as a huge hill to climb!.
I do hope your remission continues for many months to come. All the best
And I get it - Ursula! I thought your blog was funny and oh so true - in theory we have support nurses too but I think she's like a distant Man United supporter; maybe got the T shirt once but never actually been to a game...... obviously that isn't entirely true as they were pretty good around the diagnosis and are in each clinic but I'm not sure that I would have them work that way if I was the boss!
People on here seem to have their backs cemented to relieve the pain - is it vertebroplasty? don't know the technical term, and the biphosphonates like zometa and pamidronate also help I think as well as helping fight the myeloma; and there are quite serious guidelines about getting a stem cell transplant in when ready not that long after diagnosis, although this does depend on your age and health generally etc - on UK sites or the US ones, the initial advice for treating myeloma isn't all that diffferent - looks like you have some homework little bear!
On the myeloma forum, if you have time, rather than the group (which is a fairly recent addition), are a few blow-by-blow accounts of transplants which are as honest as we can make them.
Whatever you decide, all the best, particularly with sorting out the pain, and good luck Mike too - keep in touch as we will be thinking about you and don't forget the icepops!?
Yes its called vertebroplasty, a bone cement is used to essentially replace the vertebrae. A Dave had the procedure done and it has restored him to full function, full flexibility and no restrictions. He just has to now build back his muscle strength and flexibility, but the pain is all but gone. Took about a month or so for the soreness to fully leave him. Fairly non-invasive, no incision, 30-45 min procedure. We couldn't be more pleased with it. He did it 3 weeks after his SCT and was happy that the rib pain was immediately gone. They suspected his rib pain was aggravated nerves from the fracture radiating out of the rib and they were in fact correct.
And this was done 8 months after the fracture! Our initial doc didn't tell us he had a fracture. Don't get me started on that one.....
How lovely to hear from you all. I can still see the bottom of Lori's saying she wasn't told about fractures, nor was I, when my first rib cracked as I turned over in bed there was so little medical response that I really did feel they should have warned me of the likelihood of it happening but when the next one went I didn't bother picking up the phone. Six vertebrae fractured in all, 2 have been treated with vertebraplasty with some success, in fact wonderfully painfree for 10 days over Christmas but back it came. Now I understand it is the Facet Joints that need treating, I mean - had any of you even heard of a facet joint before this? Unfortunately the snow stopped me getting to Oxford to have this treatment - 30 minute outpatient - last week but hopefully it won't be too long before they find me another window. The first thing they try here is to give the FJs a steroid and local aneasthetic injection which sometimes works for all time if not the nerves feeding the FJs can be treated to block their tiresome little memories, amazing really. That bit is between my shoulderblades, I think the lower back pain, in my case, could be muscular but who is going to tell me, I'm having some light massage which seems to help my general wellbeing and have been given some exercises but nothing really moves it for any length of time.
Mike - I do hope your SCT all goes well, they do seem to have the whole thing sussed even tho' it comes across to me as an Everest, which I think puzzles my lovely consultant somewhat. I too have lost 3.5 inches, in my heyday I revelled in arms up to my armpits at 5'11", I now find the actuality more than somewhat uncomfortable but am adjusting with time, no doubt air travel will still be cramping as my legs are as long as ever, I am going to give it a try at the end of March! Oh yes the Zomorph helps I've been on it since May but somewhat less now I'm glad to say, a TENS machine helps sometimes too. Just keep attacking the attacker inthehope it might one day succumb.
