[HelenParticipant]

Hi girls
Just thought I'd add my 10 pence worth here. I've been on revlimid for some time and my sense of taste is poor now. Lots of things taste wrong and a few even burn my mouth, alcohol feels like it has chile in it and all citrus except orange are painful to taste. Lamb has a weird taste and spiced food is also uncomfortable after a couple of mouthfuls. I don't think your respective chaps are trying to be difficult, but it's hard work and quite soul destroying when everything tastes odd. It's probably easier for me too as I'm in charge of catering in our house, I only had a week off cooking after coming home from hospital, (cooking not husbands strongest skill! ) so I get to pick the menu. Lots of chicken, more dairy than before and more shepherds pie etc. I suppose I prefer what could be called traditional British food now, prevously we ate anything. I drink a lot of peppermint tea too which I hated before but now seems to be a good taste.
I asked why the strange sense of taste but no 'known' reason, some people worse than others, might come back etc etc. Do keep asking though in case something comes up. ………….. But it might be you drinking the grapefruit………..:-P
Love Helen

[HelenParticipant]

Hi Wendy
Well done for the run, not something I'm likely to ever do so I take my hat off to you. And a brilliant total for the charity
Love Helen

[HelenParticipant]

Hi Keith and all
I too am just on an aspirin a day with the revlimid, though I did take the heparin injections with me to NZ for the long haul flight, just as a belt and braces approach which seemed to do the trick. Revlimid makes me tired too and everything still tastes funny, but it's working so not complaining:-)
I hope you get on ok with the new regime Keith, and when you get away, have an absolutely brilliant holiday
Love Helen

[HelenParticipant]

Hello Teresa
How are you? I thought a lot about you while I was away. I'm over the jet lag now and feeling pretty good. Have you done much in your garden, mine is a wilderness, we've had so much rain every weed is 6 feet tall and all plants washed out, you get the picture!:-/
Love Helen

[HelenParticipant]

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 bay.
Thinking of you
Love Helen

[HelenParticipant]

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 the vanguard of all the new therapies coming on line.
I'm looking forward to hearing your words of wisdom for years!:-)
Love Helen

[HelenParticipant]

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 August
9 months later
Just back from trip to NewZealand, on Revlimid maintenance, and back to work end of this month.

Wasn't nice, had lots of problems, still have a few, but I'm alive, still in complete remission and better than I was just before my diagnosis.
So hang on in there and hope for the best.
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 others, it's a case of ' whatever it takes' to get as long as possible. It is important for him to tell the docs exactly how he feels though, in case any really harmful side effects are occurring.
Good luck, it's a tough road
Love Helen

[HelenParticipant]

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 about being on it again, it was quite a difficult decision as I have a lot of small but annoying side effects with it. I would have liked to be drug free again but I thought I might feel cheated if I couldn't give it a shot. So now I'm on it, I'm not as well as I was between induction and SCT but I'm ok, and better than before diagnosis. If it does show to work well though, it won't be too long before its widely available. Thalidomide went through the same sort of trial but did not work well enough for the majority. The trouble is that the efficacy and safety trials for new drugs take so long to complete and assess before they are legally allowed to be used on patients.
Love Helen

[HelenParticipant]

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 take your temp every day and if it is above 37.5 for 2 hours consecutively then phone the hospital. Opportunistic infection strike very quickly so you need to act quickly. I'm sure Eve will comment on this if she sees it as Slim had some nasty chest problems which caused all manner of trouble
Love Helen

[HelenParticipant]

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. As I mentioned in my 'postcard' the shear fact of getting there after everything that has happened over the last 15 months was an emotional journey its self. I managed the journey ok, watched all the films 🙂 but it was 36 hours door to door and the jet lag lasted about 5 days each time. We travelled around North Island only and I went to bed early a lot, not to sleep but to escape people and noise, which I've recently noticed I'm doing a lot, no idea why!
Anyway it was a very normal sort of holiday, no one talked about mm,:-D we did lots of sightseeing, and shopping and eating out. I'd just go back to the car if I felt tired but most of the time I managed ok, even kept up with 2 very energetic 6 year old boys as they bounced along beaches and excitedly ran round The Hobbit film set, which was great fun. I paddled in the Tasman Sea and the Pacific Ocean by moonlight on the same day! (it's a narrow island) I'd like to have had a swim in them but it was winter and jolly cold in that water! 😎 I'm planning my next holiday now and it will be The Inca trail if the seasons and insurance and my blood results all align themselves ok. If not then the French canals I think. Do you have any travel plans?
Take care and keep drinking all that liquid!
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 attend? Perhaps someone else on the site will be able to advise you.
Helen

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