Dear Eve
He will be different but similar, you will both adapt to the new 'normal'. It is very hard to endure the SCT and you will both be worried sick, you are at the worst stage now, give him time and space to come round, every cell in his body has been poisoned and we can only hope that it works for a long time – keeping the alien invader ar…[Read more]

Hi David
There are some people who get much longer times than others too, i hope you are one of them. Though it is temping to look at time as a marker. And while it is an incurable disease, it's not terminal until there is nothing left to treat it with and you have overwhelming disease. Which does make it confusing. Especially now when we are in…[Read more]

Hi Vicki
Potted history
I was diagnosed 3.2.11.
Anaemic but no obvious bone or kidney damage, 60% bone marrow involved.
Started Myeloma xi trial 10.2.11, on Revlimid, Cyclophosphamide and Dexamethasone.
Went to complete remission after 2 months but 4 cycles is the minimum, so finished induction in June.
Cell harvest July,
SCT 15-17…[Read more]

Hi Lexi
I've not experience of this but someone else might, I'd be temped to phone the specialist nurse and ask her what she thinks and explain to her that mum won't tell the doctors
Love Helen

Dear Jean
Eva's and Dai's replies are first rate I think. I can't comment on the thalidomide as I had Revlimid, but they are right that the niggling and low grade side effects and feelings of 'body out of own control ' are common side effects of what are VERY toxic and powerful drugs. Frank will have to choose his own path here but I'm with the…[Read more]

Dear All
Wendy howcome you weren't asked to do the Myeloma xi trial, i thought it was a national trial? And you were diagnosed around the same time as me.
Indeed myeloma xi is still the luck of the draw, I went on Revlimid as induction and am now on it as maintenance too. Just before the computer randomisation after SCT they asked me what I felt…[Read more]

Hi Vicki
I had several chest infections while on the induction chemo,usually at the end of the cycle too. And i never felt iller than usual nor did I have a cough. Dexamethasone is a curious drug and it has a nasty habit of hiding infection, by making you feel well and cutting inflamation, giving bugs space to sit and muliply. The best plan is to…[Read more]

Hi Wendy
Thankfully even tea and coffee and alcohol count in our neck of the woods:-) Which is good, as I say I keep forgetting where I am with it all, I have to use specific cups and cross them off a list:-/ and very sadly I can't drink wine at all now:-( As it tastes funny since I started on Revlimid.
My holiday was a fantastic experience.…[Read more]

Ha Wendy
I asked the same question ……. For the same reason……..l and she said, ' forever' cause when it comes back the mm can damage the kidneys before the blood results show relapse and the high fluid intake helps prevent damage … It's a bit of a bore though isn't it. I keep loosing count:-)
Love Helen

Hi Keith
I'm sorry its come back, but get away and enjoy the holiday as much as possible, and as Dai and Debs have said I hope the Revlimid does the trick, I'm on it too – without Dex , and everything tastes funny for me too.
Hang in there
Love Helen

Hi Alison
I had a 6 week wait between last induction therapy and stem cell collection. Then once they knew they had enough cells they gave me the transplant date for 3 weeks later. I imagine each hospital will have their own set up, ours doesn't use Hickman lines if possible so there is a difference to start with. Which hospital does your mum…[Read more]

Oh Andy
What can I say? It's so difficult, and very disappointing, and every other emotion all over again….. I'm so sorry. But you just have to do what ever you can and hope it works for as long as possible, are they going to repeat the SCT as well?
Hope the Velcade works well for you.
Keep in touch and let us know how you get on.
Love…

Hi Keith
Yes, got to get the priorities right and go for the holiday, I totally agree.
I thoroughly enjoyed our trip, my sister was an absolutely brilliant tour guide and our well placed relatives meant we could stay with them for huge chunks of time. So we travelled round the North Island quite a bit. We hired a fabulous beach house for the…[Read more]

Dear Keith
That's a bit of a 'b……' have you managed to get away as planned?
When I was expelled from the blood bank in 2010 it was because I had a pancytopaenia, the mm cells occupied the space in the bone marrow so the normal cells have no room to form.
What is the next step for you now?
Love Helen

Hello Everyone
Back home again, no ill effects except massive jet lag both sides of the journey, so I'm about to plan the next trip, better get the atlas out! Will sort out a photo or 2 when awake.
Was back to clinic this morning, still in complete remission, so started cycle 8 of maintenance Revlimid today.

Have read a few of the posts over…[Read more]

Hi Dai
Well….. There you go, all these bugs must be catching…….. Even over t'internet,:-) It was probably me! I've just had another chest infection last week too. Finished the dreadful doxycycline on Sunday. I'm just hoping for a clear week before we go away. You just get yourself fit and well by the time I get back. Glad Janet enjoyed the…[Read more]

Hi Wendy
I'm sorry, I must have missed this bit of good news, glad to hear everything is going well, we must only be a few weeks apart, I'm at 8.5 now.
And yes Paul are you all set and ready for your SCT?
Love Helen

Hi Teresa
That's a very nice even colour for a previous brunette, I confess to not knowing what shade my hair was before I lost it as I'd been colouring it quite merrily for the last 20 years, but I found losing it totally devastating. I was quite surprised to see how grey it is as it has grown in but I'm leaving it like this for a while, see…[Read more]

Hello Mavis
You sound much cheerier today. Which is good. Any walking around counts when it's tough going and you are tired after the drugs and the disease effects, so well done. You are right to be just counting off the treatment months, and as long as you can keep as fit as possible and the pps drop you are doing the right thing.
Love Helen