wendyduffield started the topic Relapsing. in the forum General 11 years, 10 months ago
I may be relapsing unfortunately. My Kappa light chains were 14 in July, 19 in October and 39 in December (up to 19 is normal range). Whilst it may just be a blip as I know they fluctuate I feel I need to prepare myself for what my specialist nurse called "relapsing". I guess that if my next test on February 15th shows another rise then I will be…[Read more]
wendyduffield replied to the topic Bendamustine Bombed? in the forum Treatment 11 years, 10 months ago
Hi Keith
Sorry to hear your news and really hope it is a blip. If it isn't, at least the consultant has come up with some other options, but its no wonder you're tired and fed up. Take it easy and fingers crossed for Friday.
Wendy
Helen replied to the topic Bendamustine Bombed? in the forum Treatment 11 years, 10 months ago
Dear Keith
I'm so sad to hear how fed up you are. What a struggle each and every day must be for you. I do hope they have something else to offer you on Friday and that the pp rise is indeed just a blip. I am thinking about you and hope to hear good results from you so very soon.
Love Helen
Helen replied to the topic So Alone in the forum End of Life and Grief 11 years, 10 months ago
Dear Sue
As Ali and Tom have said, get in touch with your Gp and get referred to the nearest hospice, i worked in our local one for a while and a few days of respite was often a godsend to families, especially when pain control was an issue. Even a few days break so you can recharge your batteries could help you both. Sometimes there was a…[Read more]
Helen replied to the topic Cramp in the forum Side-effects 11 years, 10 months ago
Hi David
Happy birthday, wishing you many more. I've had cramp a lot over the last few years and nothing I've tried seems to work very well. I now resort to standing barefoot on the coldest floor I can find! This doesn't help when I get cramp in my hands or abdominal muscles however! I will be trying all the above as well.
Love Helen
Helen replied to the topic Second anniversary visit to haematology in the forum General 11 years, 10 months ago
Hi Ali
Thank you, I like to think we girls scrub up ok when the fancy takes us! We were at a wedding so pushed the boat out a bit, it was so lovely, but way too close to Christmas (22 nd). I hope you and the family had a good time? Less worry this year?
Re the Revlimid, my relationship with food has been poor since starting it. I have lost my…[Read more]
Helen replied to the topic Second anniversary visit to haematology in the forum General 11 years, 11 months ago
Dear Tom, Ali and Vikki
Thank you, I like the sparkly bit, note to self, add more!
I still don't know why I can't improve the energy but I'm not letting it stop me from doing stuff. I also am celebrating any event going, and Vikki, hopefully we will soon hear of your adventures as Colin recovers and gets the wanderlust bug!
Love Helen
Helen replied to the topic Bendamustine 2nd Cycle in the forum Treatment 11 years, 11 months ago
Awww Keith you are welcome, I expect to see you at the info day next year, still supporting others as you have so selflessly done for some time now. Hope the blood transfusion gives you a boost for new year.
Love Helen
Helen replied to the topic Second anniversary visit to haematology in the forum General 11 years, 11 months ago
Thank you Mavis and Alex, it is certainly a tunnel from which I am beginning to emerge, I dare to hope that I am lucky enough to stay fit for some time now, Still no stamina! It's as though my 6 heavy duty batteries were replaced with one small aa rechargeable! I run out of power so quickly it's annoying!
Wishing you both a prosperous and…[Read more]
Helen replied to the topic Bendamustine 2nd Cycle in the forum Treatment 11 years, 11 months ago
Dear Keith
Glad you had a good Christmas, I had an extra guest who was so picky with us it might have been better if she'd stayed somewhere else! But we survived it. Whooping cough now gone, got a cough and cold starting now instead, whoopee!
It's really odd how different each of us react to the drugs and the disease, speaking as one who seems…[Read more]
Helen replied to the topic The worst so far in the forum End of Life and Grief 11 years, 11 months ago
Dear Gill
I cannot imagine how hard it must be for you, it is these times of festival and tradition which often define who we are, and our shared experience which travels on with our children has created stability and pleasure, despite the rows and grumbles over who does what! I do hope you find some peace, the times of firsts is so difficult.…[Read more]
Helen replied to the topic Second anniversary visit to haematology in the forum General 11 years, 11 months ago
Dear Graham and Gill
Thank you for your good wishes, I'm up to my eyebrows with Christmas, but hope you both have a peaceful and lovely one albeit in such different circumstances
Love Helen
Helen replied to the topic Latest Results in the forum General 11 years, 11 months ago
Hi Val
Good news indeed, I'm hoping you get lots more years, have a good Christmas
Love Helen
Helen replied to the topic Appointment results in the forum General 11 years, 11 months ago
Awwww David, drug free Christmas and birthday sounds good, it's funny, I don't know what drug free is like! I have no idea if I'd be better off the Revlimid than I am on it, but I'm not planning on stopping to see, if that makes sense 🙂
Have a good Xmas
Love Helen
Helen replied to the topic Second anniversary visit to haematology in the forum General 11 years, 11 months ago
Dear Ali, Andy, Sandy ,Helen ( so right – good name:-D ) David, Michelle, Tom, Jo, and Vikki
Thank you all, yesterday and today have been really good days despite the horrible zometa, at last I feel really well.
Ali it is very kind of you, I'm only doing what others did for me to keep me going in the dark hours, do have a lovely Christmas with…[Read more]
Helen replied to the topic Cycle 10 in the forum General 11 years, 11 months ago
Hi Andy
Free coffee!! Well not round here it isn't. V expensive here! And we do want to hear about how you get on, we worry about the ones who go too quiet, it's all about the balance again.
Love Helen
Helen replied to the topic Neutropenia Sepsis in the forum General 11 years, 11 months ago
Dear Keith
Really hope you feel better soon and enjoy Christmas, you are so right to emphasise the need to spot things early, it's so easy to let things go ' just a day or 2 ' then have major problems.
Love Helen
Helen replied to the topic Franks stem cell harvest in the forum Treatment 11 years, 11 months ago
Dear Jean and Frank
Great result!:-) if it were not true they would bring him back tomorrow to have another go, and it doesn't sound like you have to go back? looks nearly enough for 3 there. Everyone is sooo different
Love Helen
Helen replied to the topic Been a bit quiet but just started Cycle 3 RCD Myeloma XI Trial in the forum General 11 years, 11 months ago
Hi Sarah Jane
Very good response there, keep it up, I did the same as Andy when I had the cyclophosphamide, Ondansetron regularly worked well for me. I was on Revlimid too and went to 0 in 2 moths, been there ever since!
Love Helen
Helen replied to the topic Zometa 'flu' in the forum Side-effects 11 years, 11 months ago
Dear Tom
Prior to Zometa I always have a couple of paracetamol, I've always had those aches and pains with it, it lasts 4 days for me and is kept at bay with regular doses of said paracetamol and the occasional codeine if I forget. Some people never react to it, some only to the first one and others at every time, just another of those…[Read more]