[elaineParticipant]

Hi Andy
I’m with you all the way mate. I’m on day 8 of cycle 3 of pomalidamide. Can’t say it’s an easy ride for me, but it’s difficult to distinguish if its the disease, treatment, or other infections that are making trips to the hospital my social life at the moment!
I’m undaunted by this and still plan for a 4 day trip to Florence in 3 weeks time, and I’ve booked a flight to my favourite Greek Island in July.
As you say every day is a gift!
As a beer monster, have you tried our Black Country favorite, Bathams? It’s been my complimentary treatment throughout my 7 year MM journey although the last lot of treatment gave me drug induced hepatitis so my liver is having a short sabbatical.
Mind the ‘hoss road as we say up here.
Elaine

[elaineParticipant]

Hey Dai, seems like we are on the starting blocks together, though not on the same track! I've just been informed by my Consultant at Wolverhampton that I've been accepted on the Pomalidamide trial too. Now waiting to sign the papers but thankfully I haven't got to undergo another bone marrow biopsy as I had one recently ( the doctor who did it hit my sciatic nerve, ahhhhhhh), and I have had a recent PET scan which clearly showed how active the MM is!
I have had type 2 diabetes since before MM came along, and although I was taken off oral meds as lifestyle changes brought my blood sugars back to normal, the Dex kicked them back into touch. So I now monitor my blood sugar levels and increase my oral anti glycemic medication to keep my sugars in check on the Dex days. In the scheme of things it's no big deal, lol.
So good luck and fingers crossed that you don't get that pesky C diff back.
As we say up here in the Black Country
Mind the 'hoss rowd
Elaine

[elaineParticipant]

Hi Helen. Had the same problem with the blond issue. My hairdresser (the local college) does a "shoeshine" for me. Bleach rubbed on the hair with foil, avoiding the scalp. Perfect. Good luck and enjoy your break.
😎

[elaineParticipant]

Hi Helen. Had the same problem with the blond issue. My hairdresser (the local college) does a "shoeshine" for me. Bleach rubbed on the hair with foil, avoiding the scalp. Perfect. Good luck and enjoy your break.
😎

[elaineParticipant]

Thanks for posting quite an upbeat account of your new treatment. Like you it appears that Revlimid has finished doing its magic for me after 15 untroubled months, and the spectre of " what next" has been keeping me awake most nights. It's good knowing that a new road in our journey isn't as dark as we sometimes imagine. Keep going Dai and everyone else who is travelling with us. Oh, and Happy New Year. 😎

[elaineParticipant]

Thank you for letting us know about your very lovely mom, I have been carefully watching the site for news of her as although I have never met her, she touched me by her strength, kindness and her humour in her posts. I have been concerned for her and hoping she was not suffering. I hope that your memories of such a lovely woman help you and your family through your grief. Take care.
Elaine

[elaineParticipant]

Hi Helen.
I too was a nurse and initially was going to go back to work after my first SCT ( I worked all the way through my CDT ) until I woke one morning and thought about all the things I had been planning to do when I retired 8 years from then and was thinking I'll never do them now. I then decided that I would go for early retirement so that I could do those things while still relatively well. It was a battle to get my pension enhanced but after appealing their initial decision I was successful and have not looked back and I enjoyed 18months of doing retirement things before my relapse which has left me in a poor physical state (a similar story to Eva's I'm afraid).
There may be pitfalls going back part time, your pension may well be reduced when you do retire so be wary of that and if like me they refuse to enhance at the first hurdle you must appeal. I had to fight for my pension and Occ health, pensions dept, managers and union were mouthing their support but were ineffectual and so it was up to me to fight my corner. Don't forget too that the NHS pension scheme has been outsourced to ATOS healthcare and as they said to me they have to no doubt that someone is ill enough to get their pension enhanced!!!!
If you would like more info on my story e mail me on elaineandgeri@aol.com.
Good luck on whatever you decide.
Elaine

[elaineParticipant]

Hi Jean.
I had bone pain in my arm/shoulder prior to it fracturing for about 3 months. It started as a dull ache which I put down to muscle strain, but in the weeks before the pathological fracture it was very painful. An x ray taken the week before was inconclusive and therefore no action was taken to prevent the fracture. I would urge not to let this ride, and get it checked out ASAP. My other arm started aching and it was nailed to prevent that one going the same way.
Don't want to frighten you but better to be safe than sorry.
Good luck and best wishes.
Elaine

[elaineParticipant]

Wonderful. Thanks.

[elaineParticipant]

I'm an old dog and this is a new trick, but got there.>:-) Well done team.

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