[HelenParticipant]

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 now. Take it.

Babs and Jan, Emma, Vicki and Eve thank you, you all help so much in the dealing with this situation, I'm so glad you are all out there. I am resigned to it now …….but I had a terrible realisation earlier this evening and now we have to get down to some serious thought, and yes I probably am vapid and vain, but as fellow lady mmers and women you will totally understand my next WAILING cry :'-( :'-( :'-( :'-(

Just what am I going to do about my HAIR.??? as you know from my many earlier posts, after SCT, I went from being high maintenance brunette woman to fabulously expensive blonde! All in the name of recovery, improving mental health etc. …no seriously….. I was relatively chunky with shoe and handbag habit and dropped to svelte size 10 so needed whole new wardrobe and new hair as re growth was no longer brunette but faded dull brown with grey streaks.
So ….. Lots of bleach, choppy little cut et voila ! Done! Blonde having fun!

Now what! I can't have bleach! Or hairspray ..or harsh dyes….. Or can I?….. Does anyone out there know how or what to keep the ash blonde or do I have to go grey? I think I need answers soon or will have to have head in a bag for 6 months!

And yes Vicki, I will be buying lots and lots more boots and Eve, Its rough on Slim having all the BMBs but i'll keep my fingers crossed for him……… and ……that sounds like a very risqué suggestion with the cocoa butter:-D
Love Helen

[HelenParticipant]

Hello Elizabeth
Are you ok?
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 low sflc, the plan is to knock it back now, velcade might work better apparently. No plan to do second ASCT as had such catastrophic time with last one. 'Save it for a rainy day' he said. I'm very well now so might not be brought too low with the velcade? I'll let you know on that one.
Tom, am still giggling over onesie! ' who bought one with skeleton on it? Very dark sense of humour in your house! Mind you sometimes black humour does keep you going, my daughter asked why I was wearing best boots for work! I said I needed to get the wear out of them! She was mortified to start with ….. Then said, well I had hoped to inherit them in good nick! We both fell about laughing.
Thanks for the hugs, all much appreciated
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 consultant sent me out on acyclovir and with a thermometer (and a course of antibiotic for emergency use ) and heparin for the flights when I went to NZ for 3 weeks. He made me promise to take my temp every day and be careful, I was and it worked.
Love Helen

[HelenParticipant]

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 the lambda numbers you get the ratio of one to the other. Normal ratio is 0.26-1.65
So if k is 5 and l is 24 the equation is 5/24 = 0.2 which is normal ratio range
L 119, k 13.6 is 13.6/119 = 0.114 outside range with lambda increase
You have to make sure you get the calculation the right way round

Mine went from 600 to 0 before SCT now they are back to 94
Love Helen

[HelenParticipant]

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 every waking hour thought that never goes away.
Speaking as a patient though, which is what I do on here, it takes a while sometimes to realise that things have moved on. You don't notice to start with, then you think you are being hypochondriacal and hysterical. Then you mention it at the clinic and they sit up and take notice, then you feel a fool for not noticing sooner. So maybe observant carers do see things sooner, I don't know. In the scheme of the disease some people have very quick changes, some change very slowly, it's just luck. I'm trying not to worry about it and get on with things again, I know I'm relapsing, but I'm not on new treatment yet. The big question is 'has the Revlimid slowed it down?'
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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. It's much less stressful for me.
You probably all think that's terrible but it's my choice.
Love Helen

[HelenParticipant]

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 lesion, but my arm hurts there, and has done for 6 months, anyway now that the sflc are going up MRI is the next thing and a decision on mm increasing its activity again.
Yes the parking thing was awful, they changed the signs without anyone telling us! Anyway a really nice woman in HR sorted it for me but it was soooo stressful, I get much too anxious over small stuff since all this treatment and disease started. Anyway, I'm off to a 60th party tomorrow and today was a sunny day so my optimism is coming back a bit
Love Helen

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