[HelenParticipant]

Hi Maureen
Thanks, hope Ian does well on the Revlimid. I had it as first line treatment and was on it as maintenance after SCT. My next one will be Pomalidomide. High dose Steroids are just awful, I’m dreadful on them …I’m probably best left on my own I’m so snarly!
I love Cornwall ..we stayed near Padstow and just ambled round the beaches every day, can’t beat it, even when it’s raining.. I don’t know why I don’t live there!
Love Helen

[HelenParticipant]

Dear Eve
I think I’m going to move in next door to you! Clearly what I need is a wife! No one ever cooks me salmon and scrambled egg…your dog is better looked after than most, no wonder Slim is still battling on….come to think of it – I do all the cooking in our house. But I don’t do the ironing!
Love Helen

[HelenParticipant]

Dear David
I don’t know what to say…! 3 types of cancer! Are you going for a record? My dad is ex RAF and he got sun related skin cancers on his head from being stationed in the Middle East … He’s had a few removed and though unsightly they don’t seem to have progressed for about 10 years now. Are you going to have to have yours operated on?
Love Helen

[HelenParticipant]

Ha Tom
Good to see you …I had cyclophos with Velcade and steroids last year… Totally exhausting, I managed 3 months on it before having to give work up for the rest of the course, been back since January but now gone off sick again…. I think my body is trying to tell me something…
Love Helen

[HelenParticipant]

Hi Eve
I love that you are so relaxed about it all, I suspect Slim is hanging in there because he is so loved and cherished. The dog is doing ok too then? Wasn’t it ill too?
It’s good the family are continuing to do normal stuff.
Love Helen

[HelenParticipant]

Hi Andy
Sorry this is such a belated reply, no excuse really! Except the steroids! I’ve now had 3 months of high dose steroids…..each month takes longer to recover. I go to find out next week what happens next…. Light chains still rising and I’m very tired. MRI shows no change since last one and back pain is under control but as you say the painkillers do make driving impossible sometimes.
All 3 of my sisters were tested and none of them match well enough for Allo so that’s another avenue closed.
I got to Cornwall and had a super holiday, still hoping to go to Italy next month but not booked it yet.
Take care of yourself
Love Helen

[HelenParticipant]

Dear Eve
You really are a remarkable woman, I suspect Slim is very happy that he chose you to spend his life with. I hope he managed his bacon sandwich this morning. Are you getting out with the dog still?
I think about you a lot.

Love Helen

[HelenParticipant]

I am so saddened to hear of Eva’s death so soon after her second transplant. I will really miss her.
Helen

[HelenParticipant]

Hi Eve
I’m sorry not to reply sooner, how is Slim taking all this palliative care? I’m guessing he’s still trying to tough it all out still? Are you managing to handle it all ok? It cannot be easy for you.
I’m ok. Relapsing again and this time steroids are not working well. I feel well though but my light chains are bouncing down then up rapidly with each dose of dex! I’m going onto Pomalidomide at some stage. I have severe back pain and am not feeling up to doing much, though some much stronger painkillers allowed me to feel near normal while we were away in Cornwall last weekend. I’m hoping it is just degeneration but it’s wait and see what the MRI scan shows now.
I’m totally fed up with being on meds all the time! I’ve had 4 months off in 3.5 years, move over Andy I’m right behind you using up all the drugs. I just hope the new ones in the pipeline hurry onto the market!
I’m sorry I’m not my usual optimistic self but it’s very wearisome at times.
Love Helen

[HelenParticipant]

Hi Pat
Good to see you back. Can’t help here, I’m still very plagued by PN in hands and feet but am 5 months behind you, so I’m just hoping it settles down eventually. Mine is much worse when I’m very tired – I’ve noticed I’m very clumsy and can’t open jars and stuff.
Love Helen

[HelenParticipant]

Totally right Carol, I stayed well away from folk when I got shingles. Chicken pox is pretty awful and can be fatal to immunocompromised people like us. My cousin, who had leukaemia, caught chicken pox from his granddaughter and he died as a consequence of it. Sorry for being morbid but it’s a dangerous disease.
Helen

[HelenParticipant]

Dear Eve
They certainly know how to make life difficult for you !, but I’m pleased to see you are still pretty chirpy and fighting Slims corner. Here’s hoping the treatment can start again soon. Is the leg wound very troublesome?
Love Helen

[HelenParticipant]

Hi Andy
I hope your back holds out so you escape further surgery, it’s just another worry!. I’ve not booked Italy yet, got back from very lovely wedding on Monday and off to Cornwall in 3 weeks. Got Amsterdam booked for December (planning ahead despite everything!) and looks like we might have to wait til September for Italy. I want to go to Vienna too I just don’t know how I’m going to fit them all in!
Good to see the info day went well, I’m sorry I missed it…. Who is Maggie?
Love Helen

[HelenParticipant]

Oh Vikki
What can I say, it’s so disappointing and frightening. Eve is right… Get off on holiday again before treatment starts but I keep my fingers crossed that it is a blip. Up our way treatment starts when you get to around 25% of your starting number.
Love Helen

[HelenParticipant]

Oh poor you, get that bicarbonate in the bath to stop the itch when it starts!
Helen

• This reply was modified 10 years, 7 months ago by  Helen.

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