[MothasParticipant]

Hi Steve,
Sorry you had to join the club.

I'm 47 and will be starting PAD in January (bortezomib, doxorubicin and dexamethasone) for 2 cycles leading to an autologous stem cell transplant hopefully around April time.

I'm based in london and will be treated at UCH. I can only echo the comments above, learn as much about this crappy disease as possible (know your enemy), the resources on this site are good and also the myeloma beacon site.

The more you know, the better informed your treatment options will be, the better chance you will have of hanging in there until they manage a cure or near as damn it.

Your consultant doesn't sound that helpful? Maybe think about finding someone else although this process can be complicated in its own right.

Hang in there brother.

Tom

[tomParticipant]

Hi Steve
Just nipped in to see how you are ? Hope you are copping well and not too many side effects.
Let us know how you are doing 🙂

Tom "Onwards and Upwards"

[ali49Participant]

Hi Steve
being diagnosed with Myeloma is a serious and scary thing but I hope I can offer some reassurance. I was diagnosed two years ago aged 48 and my kidneys were failing (creatinine over 1000). I was treated with dexamethasone, Velcade and doxorubicin and was on dialysis for four weeks. I was able to come off dialysis and my kidney function is poor but stable (creatinine average 400.
Like Jo I was advised against SCT but they harvested my stem cells (Sept 2011)and froze them anyway. I was well and back to work full time but when my pp levels started to creep up again I was treated with the standard CTD therapy (cyclophosphomide,dex and thalidomide)for 18 weeks. This was ineffective for me so after they proposed a stem cell transplant as my best option. That was in September,I was looked after very well in Oxford, and my kidneys were not affected at all. Now I am contemplating going back to work in a couple of weeks!:-/
I've been fortunate in feeling well most of the time and able to carry on pretty much as normal. I hope this will be true for you too.
Best Wishes
Alison

[stevo72Participant]

Hi Peter sorry for delay in replying, back on all meds now so taking it seriously not too keen on the cyclo dex bit but hay ho onwards and upwards hope you had good Xmas

[stevo72Participant]

Hi sorry for slow reply thanks for your advice and support, so have you had sct now? Hope your feeling better and had a good Xmas, all the best for new year

[stevo72Participant]

Hi Ali hope your ok ! How are you feeling now and how's your kidneys are they starting to recover? It seems there's not too many off us with kidney trouble how are you finding the restrictive diet?

[stevo72Participant]

Hi Tom thanks for checking in, I'm not too bad little bit of dizziness in the afternoons and after seven months my stomach does not like velcade jabs anymore it looks like I'm mutating into a zombie down there lol hope your ok

[stevo72Participant]

Hi mothas thanks for reply hope your doing well, I also believe in knowing your enemy but after seven months of chemo watching your body and lifestyle completely change and feeling like you've never felt before sometimes it's nice to forget it for a while, it's not me denying it but not giving mm the satisfaction of thinking about it every day especially as its affected my kidneys ie what I eat and drink how much etc, have you started treatment yet and how are you finding it? Good luck on your journey

[tomParticipant]

Hi Steve

Pleased your doing well and as for getting dizzy if it was me my young bride would tell me I was born dizzy lol.

Keep fighting it steve.
Happy new year.

Tom Onwards and Upwards

[stevo72Participant]

My girl is Bulgarian never mind chemo trying to learn bulgarian is a head spinner lol

[PeterJamesParticipant]

Hi Steve
We had a great family Christmas & new year, feels like I have been on holiday until SCT starts on the 17th Jan at the Christie Manchester
Likewise I hope you & your family did also had a good Christmas break
Glad to hear you are back on the poison , it is an acquired taste. My consultant was amazed that I enjoyed it so much that I had few if any side effects.the stem cells also shot out off my old bones , 7 mill in two days, so got enough for two goes
The high dose of steroids over each four day period were great, got rid of my back pains & I could walk so much better, so much so I had an epidural injection just before Christmas to make the feel good factor last longer
I have turned into an OAP druggie since the onset of MM
Great fun going into a chemist for pain killers & they ask you if you are any other medication , I reel of the list , they ask no more questions !
All the best
Peter

[ali49Participant]

Hi Steve,
I've been lucky re dietary restrictions as I don't have any at present. When I was first diagnosed the dietician put me on a low potassium diet. I queried it with her saying 'most people with cancer are encouraged to maximise their fruit and veg intake, lots of fresh organic stuff etc, and you're telling me to eat 3-4 portions and well cooked!' She went off to check my notes and then said my potassium was not that high anyway so not to worry!
It does creep up and I am careful to avoid high potassium foods in large quantities. Also try to drink 3 litres a day although my renal consultant didn't seem to think this was necessary.
How did you find out that your kidneys were failing? Have they improved since you started the velcade?
Alison

[stevo72Participant]

Hi Ali I'm sitting waiting now funnier enough for my velcade now lol, my kidneys have improved from 11 gfr to 17 but creatinine is on average. 350 and potassium levels are about 4.8 what are yours? Do you avoid toms bananas etc

[ali49Participant]

Your results sound similar to mine. My last potassium was 4.7 and my eGFR was 14. I don't eat whole bananas but I might put a few slices on cereal. Ditto oranges and tomatoes,(not on cereal!) only one cup of coffee a day if that. I remember when I was on the renal ward and I asked for a cup of coffee there was a shocked hush before I was informed that it was tea or squash!!
Hope your appointment goes well
Alison

[tomParticipant]

Ha ha I bet it is, I hope you don't get chemo brain he he

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