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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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

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 thi…[Read more]

Hi Andy
I am back to work! 4 weeks now, gradual return and I’m tired but ok really. The shingles rash site is uncomfortable but getting less.
Love Helen

Hi David
Well this is how I understand it …. A normal immunoglobulin ( A,D,E,G or M ) is usually drawn as a Y shape, made from 2 heavy chains with 2 light chains bound to it on either side, kappa and lambda.
Light chains are not fixed very firmly so it’s not uncommon for the normal population to have low levels of flc in their blood as they can…[Read more]

Hi Andy
Good results there, hope it continues to do the trick. Enjoy the beer, I still can’t drink alcohol, my taste buds must have been totally nuked!
Love Helen

Well done David! Hope it stays like that for a very long time
Love Helen

I’d expect to get a mud pack too
Love Helen

Dear Sal
I’ve had mm for 3 years now, 56 when diagnosed. Given induction chemo, had SCT, relapse and next course of chemo. I’ve taken a lot of sick leave and am now back at work. My husband hasn’t given up his work either. I don’t take him to the hospital,( he’s a bit squeamish) and I found having him clattering about the house after my SCT was…[Read more]

Dear David
I do hope you are going to point this out to the consultant you saw? I was on aspirin all the time I was on Revlimid with the injections when in hospital or flying long haul as DVT is A KNOWN complication of Revlimid. I hope it settles down and is trouble free soon. But you will need the injections all the time as you are high risk…[Read more]