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]

Hello Jo, Jean, Vicky, Ali
I apologise for the bulk nature of this reply, but thank you so much for your cheery replies:-)

I got the parking space back!….. And a little note from personnel asking how I was!

Jo are you managing your new treatment well or is it very exhausting?
And Jean I hope Frank continues to improve? How is the…[Read more]

Hi Sue
I've never had a PET or MRI scan only CT, so MRI next week will be a first for me with mm, though I had a brain one as a research volunteer a few years ago…. And yes my brain is there,! I find the Revlimid tiring and it has probably worsened the peripheral neuropathy I had before diagnosis but not impossibly. I find it upsets my gut…[Read more]

Hi Terry
I have just posted along similar lines and am in almost the same place as yourself. I still work, a huge part of my identity is through what I do, and I just love my job. It is interesting and stressful, valuable and sometimes exciting and humbling too. Without my work what will I do? I like the banter, i get a great deal of personal…[Read more]

Hi Mary
My husband cornered the antibiotic wipe market, cleaned everything i was ever likely to touch and stopped all visitors and tried to cook. He managed 3 days cooking then self preservation stepped in and it was better to do it myself. I only ate very bland stuff for months and still don't eat as i used to. We changed beds and towels every…[Read more]

Hi I agree with Eva here, the drug arsenal for mm is still small so if a drug works and you can tolerate the side effects it's worth persisting and getting as much mileage out of it for as long as possible, then using it again in the future if you can. I have now spent the last 2 years on Revlimid with a few months off over transplant but each…[Read more]

Dear Sue
That is just an awful short time for you, I can only sympathise and hope all goes well on this next lot of treatment. It's such a tough road. Keep us posted on how you are getting on with it. I've been on the Revlimid for18 months now and had annoying but low grade side effects only.
Love Helen

Perhaps all we need to get better is more sunshine and beer! Love Helen

Dear Eve
It's really hard isn't it? And it feels unfair when you look and feel well! Make sure you have lots of anti midge stuff for Scotland, but it's always very pretty.
Love Helen