Hi Eve don't do face book….long story
Love Helen

Thanks Maureen, that's very kind:-) love Helen

Dear Dai and Eve
You are both so right, since my relapse I have felt that the elephant has had to be addressed directly, as I feel it walks into the room with me. If people do not say hello to it it and ask it how it is, gets bigger and bigger until I find it sitting on my chest and I have to talk about its feelings and deflate it a bit. What…[Read more]

Dear Eva
Thanks very much for this, it is only by you people ahead of us that we discover the little tips and wrinkles which can alleviate worry and discomfort. I'm very grateful to you
Love Helen

Dear Tom
I do hope you are right, I'm really not relishing starting over on this palaver again, but if it knocks it back then i dont really have an option. Are you fattening yourself up before stem cell collection? I do hope so, it is quite a rigorous procedure.
Emma just use the time with your mum while she is well, it is hard but you have time…[Read more]

Hello Elizabeth
Are you ok?
Love Helen

Hello Mavis
I went to New Zealand and was covered when in remission. That was with world first.
Love Helen

Dear David and Jo and Tom
Am now watching your Velcade journeys with more than just passing interest! It's marvellous how soon one manages to readjust to changing circumstances with this disease. I'm hoping you all do very well on it. Note to self ' don't rub eyes''
Still watching from the sidelines Helen

Dear Emma, thank you, I hoping the same, you just get your optimism back and you get smacked down again. I hope your mum is continuing to improve, is she out of hospital yet?
And Ali Jean and Vikki I don't know why they decided to treat straight away, it seems to have been a group decision, weird non typical cells + myeloma cells and no pp and…[Read more]

Clinic today, relapse is definite, off Myeloma xi trial and start VCD on 20th May. Don't know how I feel now, physically well, mentally all over the place
Helen

Well am laughing soooooo much ,… 🙂 🙂 😀 🙂 have nearly dropped iPad in bath and husband has run upstairs to see what is the matter!!! I love it! Not sure I want one unless its in pink, but yes, cute is good. Tom you do make me laugh.
Much love and thanks and when you read my other post you'll see why. Helen

Hi Ellen
I do hope you can convey our heartfelt wishes to Keith and his wife, let them know how we are thinking about him and wishing him well.
Love Helen

Dear Tony
How encouraging a post, delighted to hear from you, and yes the number worry is awful. But you give me great hope.
Love Helen

Hi Tom
Am not on face book! Put onesie pic on here?:-) pretty please! Are you better now?

And Ali
It's back to the ' feel a bit ill? Take temp….. If stays above 37.5 for 6 hours or hits 38 once phone hosp…. She is on the trial… That's what they have to report so she needs to go in to see them. And I can understand holiday fears. My…[Read more]

Dear Maureen
Two sorts of free light chains – ask for both results, as a rough rule the lambda is about twice the kappa but there is a range.

Normal kappa is 3.3-19.4, lambda 5.7-26.3 (gms p Dl)

I'm no mathematician but I think the following is correct, no doubt someone else could make it easier to work out!

If you divide the kappa by…[Read more]

Dear Eve
I know you aren't rambling and yes I never suspected myeloma seriously, it crossed my mind only but it is rare and I'm the wrong profile. I'm still surprised to find myself a patient! Even with hindsight I'm glad I didn't know sooner though .. I did a lot in those last 2 years which I would never be able to do now. And I didn't have that…[Read more]

Hi Nikki
Very common to have all sorts of electrolyte disturbance, if not having normal diet and fluids its easy for them to get too low and need topping up by drip.
Love Helen

Hi Eve
Thanks, I hope Slim's more comfortable now. I'm not unhappy with my treatment or how I was diagnosed, I think it's all been done as and when needed. As the patient, sometimes you have to have time to let things settle, I've found when my husband starts to do the asking, why and what next it is very unsettling for me so now I go by myself.…[Read more]

Dear Vikki
I'm glad he's slowed down a bit, I think it's still early days for doing a lot.
It is really hard to know what each pain means, I worry the same way, I have been told endlessly, I have no bone involvement, but I have a small hole on X-ray of my arm and increasing back pain, nothing is standard and the report says its not a myeloma…[Read more]

Hi Tom
I only had 4 cycles of RCD before my ASCT .As both Eva and Peter have covered just about every point very succinctly I can only add that whatever decision you make will be the right one for you, if you choose asct it will not be pleasant but you will endure it and if you have questions and need answers someone out here will always answer…[Read more]