[HelenParticipant]

Hi Andy
I’m just back from holiday and it seems I can’t turn my back and you have posted another whoops! How are you doing now.
And hi Vicki ..how was Mauritius?
Love Helen

[HelenParticipant]

Hi Rebecca
I have attached 3 photos. 1 is clearly Christmas ! 4 months after my SCT, the second is April 8 months post SCT . I had my hair trimmed in the March but only minimally to even out the wispy bits. I had the curls cut off and colour applied in July , 11 months from SCT. Until I looked for the photos today I’d forgotten how long it seemed to take, and I focused on it a lot too.
Love Helen

Ha well I tried to load the pics but clearly the new site does not want to play ball! I will leave this to Stuart to try to fix!!
H

• This reply was modified 10 years, 7 months ago by  Helen. Reason: Can't see pictures posted!

[HelenParticipant]

Hi Carole
The chemo makes us lose most but not all hair ..as when it gets to a certain stage it becomes dormant or old hair which stays put for 6 months or so I believe, what we lose is just the actively growing hair. I lost about 3/4 of my hair after melphalan and was left with wispy moth eaten looking hair, I cut this very short after about 4 weeks. After about 3 months post melphalan I had lost nearly all of this hair but new hair was beginning to grow. Another month after this I had a complete covering of very short, dark hair. I had my first trim after about 5 months to get it all one length… Very very short. I became allergic to the wig so discarded it as soon as I could, just after the 3 month mark. People just thought I was a bit bohemian with long dangly earrings and loads of mascara and making it look like a statement! Then it changed and went curly and black and silver!
Now I’m a blonde
Love Helen

[HelenParticipant]

Dear Helen
I’m so sorry to hear that you have relapsed.. It’s a hard fact to get to grips with, I’m still a bit shocked to find myself at this stage! I’m at the other side of Velcade, hoping it will last as long as possible. Like yourself I’ve been one of these ‘react quickly’ to the drugs but not lasted long. I really hope you get a long remission from the SCT.
Love Helen

[HelenParticipant]

Dear Andy
Where in the lakes are you? I feel I should know this from somewhere but have forgotten. I’m going over there for the weekend. Penrith way I think.
I’m not going to make the Newcastle info day I’m afraid… Been invited to a wedding.. One of the daughters cradle mates and she’s going to be the grooms woman or some such idiocy! However I wouldn’t miss it for the world. Just wish I wasn’t missing the info day.
Love Helen

[HelenParticipant]

Dear all
Having received the diagnostic bombshell of myeloma, given the available treatment options ..trial of RCD and Velcade if no response or current gold standard treatment…CDT, I left the haematology dept and went to do my homework.
This was 37 months ago. I agonised over the data, I work in a uni so trawled the medical library… I fully understood my options as I am a clinical researcher. In floods of tears I made my decision.
I won’t ever know if it was the correct one. I was randomised to RCD…. Was myeloma free in 4 cycles progressed to SCT and had a nightmare recovery lasting a year. I had 15 months on Revlimid maintenance in remission before I relapsed and have now completed 8 cycles of VCD, the last 4 at half strength owing to the severity of the side effects. I’ve had 3 months remission now and feel really well again.
What would I do differently? Well time has moved on and it seems that Velcade is looking better but the evidence isn’t there yet for it to be used wholesale as first line therapy.
Lots of people get a long spell of remission from CDT
But I’m glad I didn’t have Velcade first…. It is a much fiercer drug than Revlimid and has given me some terrible neuropathy pain and other side effects.
I can’t have Revlimid when I next relapse and will have to have Pomalidomide or Bendamustine next.
So the decision over which is best is constantly changing and healthcare decisions are made in good faith at the time of need as we can’t predict what is around the corner.
Helen

[HelenParticipant]

Hi Jean
I’d been given Amitriptyline for the peripheral neuropathy, but when I got shingles at Christmas they trebled the dose to help with the neuralgia and it does seem to have had some effect though it took a while to get going. It might be worth trying the Lyrica just at night, see if that helps with the ‘zonking’. I had codeine, paracetamol and the occasional brufen when it was very bad through the day as well. It’s still reminding me occasionally but I’m weaning myself off all the drugs now. Need it sorted for the holiday, we will be going as you get back.
Love Helen

[HelenParticipant]

Hi Carol
I had my last zometa a week before SCT then it started again at the 3 month mark. It was stopped after 2 years, following MRI, as I have no obvious bone involvement… So if you have bone lesions the recent theory is to stay on it if there are no severe side effects.
Love Helen

[HelenParticipant]

Hi Vikki
Am saving very hard for ……holiday….. Hope its a cheap wedding! Think it will be a bit home spun… She’s a very creative type.
Have a good time in Mauritius …. Now there’s a place I haven’t been!!
And Ali I’m really glad to hear your mum is doing ok, and I love the pic of you and your very smart boys.
Dear Maureen I laughed out loud at your post …then I wondered if it was serious! What ever! Hope you have a good stay in the lakes.

And Jean I can’t find the post where you put that you are off to Lanzarote .. We went last year, we found it very pretty and quiet where we were, some nice restaurants by the sea where you can watch the sun go down and it was quite hot too, have a lovely time.
Love Helen

[HelenParticipant]

Dear Carol
Well done, may you have a very long remission. Make the most of it.
Love Helen

[HelenParticipant]

Dear Andy
Glad to hear you are out again and back on the beer. Keep up the good work.
I’m doing ok at work but I’m using up holiday just now and I think I might have to retire after the summer. I will be 60 in May so was trying to get to that milestone! And I like the salary as we have a wedding to pay for at the end of the year as my daughter has decided to get married. ( we haven’t had the budget setting meeting yet!)
I’m off to Madeira at the end of the month, having got insurance based on a near perfect set of blood results, best for 3 years apparently….. Even the light chain ratio is normal! So 6 months of Velcade has now worked for several months, worth the painful feet and hands. Let’s hope it continues!
I’d imagine we will be at the Newcastle info day in June. Hope Steph is keeping ok.
Love Helen

[HelenParticipant]

Hi all
I wonder how, if we do not yet have a mechanism or way of deciding what drug works best for which type of myeloma, there could be any other way than the one we have now?
I know that NICE’s ‘one size Fits all’ in the first instance with CDT until proved ineffective is unwieldy but as Andy has said, it suits some people and they can get years of treatment free high quality life afterwards.
Before NICE and specialist haematology it was my experience that patients got what the consultant preferred, often not backed up by any recent challengeable research, at least this way the new research is put into the public domain relatively quickly, and we do have the cancer drug fund to resort to if we shout hard enough.
Saying that, this is a costly disease to treat and as a taxpayer NICE has a duty to save my money if the evidence for a drug is only going to work on a very small number who are impossible to identify yet.
I took the RCD trial route with SCT and maintenance Revlimid to follow and only got 15 months from it. It’s early days since I finished the Velcade, but it was a much fiercer drug to deal with physically and I would have preferred the RCD/CDT route again had it been possible.
Dusk …you do not say what treatment you think you should have had. Why is this?
Love to all
Helen

[HelenParticipant]

Dear Jean
I’m sorry to hear that Frank has shingles, I’m still suffering with the pain though all spots have gone now. I’ve had codeine, paracetamol and Amitriptyline, all the time and at maximum doses for about 2 months. I’ve weaned myself off all the codeine and some of the paracetamol but it’s very slow. As I’m now back at work too it’s a bit confusing as to what causes what but I’m dreadfully tired a lot of the time.
Anyway I’m feeling better now than I did 6 weeks ago so while it may be slow, it is progress.
I do hope Frank feels better soon, don’t wear yourself out!
Love Helen

• This reply was modified 10 years, 8 months ago by  Helen.

[HelenParticipant]

Dear Maureen
Good to see you and Ian have managed to get away at last, hope this is the first of many trips.

And Eva how good to see you are responding to treatment, I was wondering how you were getting on. As Eve says b&b can’t be much fun though. Will you have second SCT in London?
Love Helen

[HelenParticipant]

Hi All
I’ve just been quoted £92 for single trip insurance to Europe with World First, I declared my warts and all! Husband was £38 with mild asthma I was £54 with MM! This is with stable disease following relapse and chemo within last 6 months, peripheral neuropathy and recent shingles. I also carry a £200 excess should I need treatment. I think I’m happy with this but even more interesting was the worldwide including America quote I got -£590 for annual cover for both of us as long as my disease stays stable, obviously if it changes I have to inform them and they will adjust the payment. I will carry an excess of £700 if I need treatment, I know it is a lot but it does mean America and New Zealand are still accessible to me.
Vikki and Colin…. Just get away ASAP!
Love Helen

[Author]

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