[robbierankinParticipant]

Hello All,
Got diagnosed with MM early Dec 2012. Then told I'm to have balloon & cement put in one of my vertebrae which had eroded away, (so that's what that pain was). Recovered from that and am relatively pain free but now have to make the decision as to what treatment to have. Apparently I'm young and fit enough to qualify for one of the trials. Haven't fully made up my mind but just wanted to say that this site & forum has been extremely helpful in clearing the fog that descends when your told 'You have MM – these are the choices – what do you want to do ?'.
Again, just wanted to say thank you to this site and all the members who contribute.
God bless,
Rob.

[eveParticipant]

Hi Rob

Just to welcome you to the site and wish you well on your MM journey.

Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on to Velcade had a good response,then SCT.they say this is a very individual disease,so no one knows what works best,but I do think trials are your best option.

Good Luck Eve

[robbierankinParticipant]

Hello Eve;

Many thanks for your words of welcome.
St. Georges is my local hospital and they don't do the MyelomaIX trial there.
Looks like the PADIMAC trial will be the only viable option.
Just trying to get my mind round the idea of a tube (Central Line) sticking out of me for several months.
Thanks again.
Bless,
Rob.

[meganjaneParticipant]

Hello Rob,

My husband Phil was on the the PADIMAC trial at St. Bart's in London. He had six cycles of dex-dox-velcade that finished in October. Phil has just returned home from his Stem Cell Transplant. If you have any questions about PADIMAC please let us know. I think it depends on the hospital but Phil did not actually have a line put in during the initial treatment but he did have a PICC line for the transplant.

Phil also has vertebrae damage and he is hoping to have the balloon and cement treatment soon, I am glad to hear it has helped with your pain.

Megan

[eveParticipant]

Hi Rob

Do not worry. About the tube it is the least of your worries,one would have been fitted later for SCT it actually makes your life a lot easier,on normal treatment they go in to veins every time often they collapse,some like my husband it takes a number of tries,so a centreline sounds much better.

If you are looking at all trials,this site will tell you we're they are,if unsure ring Ellen,you can do other trials as long as you are prepared to travel.Kings is one of the main places for blood cancers.

Hope this info gives you more insight Eve

[robbierankinParticipant]

25/1/13. It begins….
Got the central line fitted and am still trying to get used to it. Treatment has started and I have a 'pump' connected to the line sending Doxorubicin into me continuously for 4 days. (Feel like I'm turning into a 'Borg' – any star trek fans out there ???)
As it's only day 2 I imagine the fabled side effects are still due to hit but the Dexamethasone steroid effect is VERY noticeable. Feel like I'm flying sometimes. Needs a lot of concentration to stay level.
Anyway for those who've had an infusion pump fitted to their central line, what was your experience of it ? (if you don't mind sharing).
Many Thanks and blessings.
Rob.

[meganjaneParticipant]

Hi Rob,

I can't help with the infusion pump as Phil never had anything like that but we completely understand the Borg side of things. 😀 When Phil was in for his stem cell transplant we kept telling his stem cells to "assimilate" and we pictured them as nano probes running around inside his body!

Megan

[HelenRParticipant]

Hi Rob,

Well done on surviving getting the line fitted! Not the most fun thing.

I think we're a fairly rare group having the pump, seems to be a St George's thing – at least I've never seen anyone else talk about it. I don't have any particular tales to tell – I tended just to wear a cardigan with big pockets and stick it in my pocket.

On a totally other note, I also never had red pee from doxyrubicin which some people seem to talk about. That sounds kind of fun. I want my money back…

Good luck with the dex flying, it is indeed rather odd.

Helen

[DaiCroParticipant]

Hi Rob,

What's occurring, as Spock might have said if he holidayed in Barry. 😉

Regards

Dai.

[andygParticipant]

Hi Rob.
I had the pump when I was on PAD it wasn't too bad once i got used to it though I too missed out on the red pee. I only had two cycles of Pad or it may of been three but it didn't happen for me 🙁 side effects wise I got a little numbing in the end of my fingers like you get when you've had your hands in water too long.
Hope everything works out well for you "live long and prosper"
All the best.
Andy

[PerkymiteParticipant]

RED PEE 😎 Where have I been since 2009! Never heard of it before so I must have completly missed those posts! What ever next. Oh, welcome to the site.

Kindest regards – vasbyte

David

[AlexBParticipant]

I used to be able to smell it coming out of me – when I peed, but even through my skin when I slept. Delicious.

[feaseyjaneParticipant]

Hello All
My name is Jane and I was diagnosed with MM yesterday.My immune system has been pretty rubbish and found to have abnormal plasma cells.Haven,t been staged yet,that will be in the next couple of weeks.
I will be starting on Ctd treatment about the beginning of April.
Have found this site so very helpful,and hope that reading these threads will be helpful .:-S

[eveParticipant]

Hi Jane
Nice to hear from you,take it your under fifty to introduce your self on there,people might miss it,you might like to go to newcomers,people are more likely to see it.

Helps if you tell a bit about yourself as some actually meet in hospitals and might be of use to you if you are worried about anything. Eve

[Author]

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