[mickeymooParticipant]

Hi,
Hope Melvin's treatment is going well I'm on my stage 6 finish
Dec 9th hopefully a break from same old tablets,injectoins I hope.
Will have to wait and see what Dr M as to say
Quick guide for me next year,my sct jan/feb GOOD NEWS they have
found me a donor 😀 thats planned june/july.

Best wishes Mike.

[AngieJayneParticipant]

Hi Mike
I was diagnosed stage 3 in August this year after several years of back pain & then repeated chest infections throught 2011 resulting in pnuemonia in December. Things gradually got worse from then on, rib pain begun during May/June and although the August diagnosis was one that I would have much preferred not to have had, it was a huge relief to at least have one & for treatment to commence. I have just started cycle 5 of CDT on the Myeloma Xl trial so same treatment and not far behind you 🙂 My M proteins are now down from 43% to 11% so hopefully a SCT for me too soon. I have had a DVT that resulted in a PE & while I appreciate that you have gout to contend with, like Eve said its better to be safe than sorry. Are your injections Heparin ? If so that should provide some protection for you against DVt's. Everyone on here are so very supportive & uplifting and although there will be both good and bad days, its really good to see you so positive, which really does help, so do keep it up.
All the very best
Ange

[BabsParticipant]

Hi Mike,
I like you had been unwell with numerous infections and also have bladder problems,My husband had also been teasing me saying I had shrunk in height, I had noticed a change in my body over the last couple of years prior to getting really constant back pain in november 2010, I then fractured a rib just getting out of bed in April 2011 and then became very ill with all sorts of problems before being eventually diagnosed with MM July 2011,was told the myeloma had been eating my bones and actually I have shrunk due to the damage to my back bone,it was actually a relief to be told what was wrong with me! sounds strange I know but I have actually met another fellow sufferer who said she felt exactly the same relief as me.
I have had 6 courses of chemo and had my SCT March 2012, it is one hell of a condition to live with, and I get really frustrated and angry even as cannot walk very far now or ride my bike or go shopping,(some people are able to work with this condition )but am very glad to have come through all the treatment and am now planning on living as long as I can, I take every one who has lived for many years with Myeloma as my yard stick to my chances of living a long time with this condition.
This is a good site where you will get lots of advice and support.
All the best
Babs.

[SharonMParticipant]

Hi Mike,
I was also 19 in 1989 so we're about the same age. I've got 2 young kids who I also adore. Myeloma certainly knows how to pick its victims.
Do you think the impact of the accident triggered the Myeloma? They say a "shock" is often the trigger. With me it was probably giving birth!
6 months later I had excruciating knee pain and eventually was diagnosed after a routine blood test. I was asymptomatic (without symptoms) for 4 yrs which was good but always hanging over me and not something I could forget about. Last year my paraprotein rose to a level the doctors decided was high and anaemia was affecting me so it was time to start chemo in prep for my SCT. It broke my heart and nearly broke ME. The past 18 months has been hell but after my SCT in Jan this year I am so proud of myself. I had it rough. Nearly didn't make it and suffered AWFUL problems after it but….I'm still here. Another friend our age with Myeloma told me she really began to feel herself again after about 9 months. That gave me something to hold onto and you know what? She was right. I picked up and almost feel like me again. Last New Year's Eve was spent in hospital – on my own, having the high dose cyclophosphomide before the SCT! This year will be different! I'm also on the MXI by the way. I got the old-fashioned CTD followed by Velcade. I then got the Revlimid maintenence which brought my PP levels from >1 to Untraceable just recently. Remission as far as I'm concerned!
Wishing you luck Mike. Sounds like you have every faith in your doctor which is good.
Keep me posted and keep your chin up.
Sharon x

[mickeymooParticipant]

Hi Shron,

You've done so well to get through all pain & suffering
I no I'm in for a hard time when I start my SCT.I just no
I've got no choice & what ever they throw at me its got
to be done.
Just let you my Dr told me the injuries I got in the RTA
& my mum having BC did not trigger MM.
I saw Dr Cook at QE hospital B'ham he told me about the
three options that I would have after my SCT until a donor
is found.
I talked to my Dr about these options she said forget them,
the option she told me they were going for was a donor.
I thouught ok maybe next year fingers crossed because my
two younger brothers did not match.
When I went to get stage 6 chemo she told me they had found
me a donor !!! 'shock' Now I'm more determined to get back
to my old self,I'll let you no how things go.

Mike x

[mickeymooParticipant]

Good for you Babs 🙂

I know how you feel I get so frustated just try & keep 🙂
I KNOW I'm in for a rough time when I start my SCT jan/feb the
brilliant news I recived the other week was that they had found
me a donor,my two younger brothers did'nt match.
DST june/july if all goes well.
My aim is to run the Great Northern Run 2014 for Myeloma.
My heart goes out to you & all the wonderful people with our
condition.

Best Wishes Mike x

[mickeymooParticipant]

Hi Angiejayne,

I hope all the treatment you have goes all well & good:-)
I read your email & yes we are on par my M proteins were
high 80's now down to 7.
Just to let you no I saw my Dr a couple of weeks ago & she
gave me great news they have found a donor 😀
Which gave me a bit of a shock so its all hands on deck
next year.My SCT jan/feb then junr/july donors SC I no it
will knock me about big time & I will do my best to get back
on my feet.
All the best Mike x

[mhnevillParticipant]

Dear Mike

Just hope you have a lovely time with your family over Christmas to give you something to hold onto when you are having a grim time in the New Year.

Very best wishes.

Mavis

[MothasParticipant]

All strength to you mate.
I'm facing SCT in March/April so you're going to be the canary in the cage for me. 🙂

have a good one

t.

[GartocharnParticipant]

Hi Mike my son was dianesed last September sounds like you pain in back and on the right the X ray showed one of the ribs had gone and then they told us he lives in Abu Dhabi and has 3 children he hopes to have his stem cell reap in late January but he has to come back to the UK they do not do it there I will keep in touch and let you know how he is warries MUM

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