'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
When we went to our local hospital in N California, it was 3-5 years with an extra 2 with SCT. Here at Little Rock, Ark, the average with two transplants (tandem) is 12 years. That's all presentations, low/high risk, 20 year olds to 75 year olds. If we make it to 10 years without an event, chances of it coming back are significantly reduced. I have met two patients out 10 years who developed leukemia from the myeloma treatment protocol chemos and got transplants to handle the leukemia (they collect for 6 here), and have met one patient 16 years out and heard of several others who are 20 years. They do DNA gene arrays here, which will be the new protocol for all cancers (per an article I just read this week). This allows them to tailor treatment for each patient depending on their "tumor markers". More and more cancer researchers are moving in this direction in order to move away from the one size fits all approach. But I suspect it will be a number of years before everyone is on board with this approach.
The SCT along with all the new drugs is what is extending the life of myeloma patients and it is vastly different than even 3 years ago. Most of the patients I have read that have not made it succumb to complications from the myeloma, such as kidney failure or more commonly some sort of infection. The problem with the maintenance drugs as I understand it, is that eventually the myeloma becomes resistant to it and thus all the different drugs they are using. Typically they move you from one drug to the next until it doesn't help anymore. Thus the SCT is supposed to knock the snot out of the myeloma enough that the drugs can keep it in remission for longer period of time. I'm not a nurse or doctor, but caregiver and this is what I understand as I have pieced things together in our experience, so please understand that my information is simply what I've learned as I've traveled down this journey and shouldn't be taken as definitive.
There are some good YouTube videos on Myeloma worth watching and are from a conference in the UK. They are also working on vaccine therapy here in the US and the UK which there is a lot of hope for handling and managing myeloma.
I'm glad your SCT was as you expected and hope the taste buds recover in time for you to enjoy your Easter Eggs!
You don't mention the pain this time so hopefully that has at least diminished. If not it might be worth asking about vertebraplasty. It deffinitely helped me in the thoracic area and although my lower back is still giving me gyp I've decided that is muscular rearrangement and am having some wonderful massage which is deffinitley helping, albeit slowly. When I went for the vertebraplasty I was treated where it was hurting most at the time but told they would do the lubar offenders too if necessary.
Keep taking the supplements, I imagine you need them now more than ever.
