Hi Vikki
It must be very difficult to just watch and not be in control, I was so well in myself last October that when I had to restart treatment as it was so seriously worsening, I was quite shocked. Now I’m on treatment, I feel terrible, but my bloods are looking better! So it’s possible for Colin to feel bad from either cause really. If he’s on…[Read more]

Hi Vikki

Great to hear from you. Sorry to hear Velcade didn’t work for Colin. Not on here very often so when I got your post I looked back to see how Colin was doing. He’s had had a rough time and he’s thinking OF GOING BACK TO WORK!!!!! I hope the new treatment works. Blo*dy disease.

Frank has his up and down days. We both took chest…[Read more]

Hi Vikki
Hope colin has a better couple of weeks from now, I’ve been on Revlimid and relapsed on it, then Velcade which gave me about 3 months before the numbers started rising again, then I had high dose steroids alone which did nothing at all, now I’m on Pomalidomide.
Apparently it’s not uncommon to be quite sensitive to the drugs but to get…[Read more]

Hello Mavis good to see you popping in, how are you doing? There are no trials going on here for people with relapsed/refractory myeloma, it was mentioned that if there is no matched donor, they would look for a trial and I might have to travel to London etc to take part,well its a case of ‘whatever it takes’ and we wait and see.
Andy – if they…[Read more]

Hi Ron
I too would get the antivirals as soon as possible, the earlier they start the less side effects and long term pain from post herpetic neuralgia the better. I had shingles last year, it was extremely painful and I was very unwell for a few weeks. She has my sympathy.
we are not supposed to have the vaccine, it is too dangerous.
I…[Read more]

and again!
Ali glad to hear your mum is doing ok at the minute, I’m awake late… It’s dex day today and I have numb feet, hey ho the joys of the treatment, but I’m not too bad overall, and as long as it works I will put up with it.
Hey Andy
Good work with your bloods, I’m on GCSF to keep the good guys going – so have to go every 2 weeks at the…[Read more]

Oh no half my post is missing! it went a bit like this!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included

hi Vikki And Ali
The wedding was a lovely day, bride and groom never stopped smiling, can’t really believe it happened, all those months preparation and it was over very quickly, I had to slope off for an hour or so but managed to be there until the bitter end -about 03.45! It was great- as she is a singer of choral music she had lots of her…[Read more]

Ps Ron – Ellen and or Maggie are brilliant (on the helpline). Helped me on many occasions.
Best wishes
Jean

Hi Ron

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with…[Read more]

Hi Andy

Just caught up with your post. I’m so happy for you it’s wonderful news. Know you have had hard times – so keep up the good work

Hi Andy
It was a lovely day- went by very quickly – the pair had a great day and never stopped smiling, weather was good and we all walked to church and reception. I’m a bit bored now without it to help organise.
Pomalidomide isn’t too bad – I’m surprisingly well apart from the chest infection, dreaded gut problems, slightly sore feet and…[Read more]

Hi all
I’ve just posted a résumé of my anniversary treatment to date! Then spotted your post Vikki!
Bendamustine is a next drug for me too, if Pomalidomide fails – and assuming no further sct. It is given IV and you lose your hair etc so it’s more onerous than the oral chemo.
My disease is IgA lambda light chain oligo secretory mm – so I had a p…[Read more]

Hi Tracey

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each…[Read more]

Hi

I’m sorry to hear that your husband has been diagnosed with myeloma and has been suffering pain in his kidneys, ankles and feet. However, now that he is being monitored by a myeloma consultant, he will have his blood and urine regularly tested to determine whether he has any causes of concern such as raised calcium levels, kidney problems,…[Read more]

Hi Andy
That’s a great result, let me know if you are in newcastle.
Love Helen

Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which…[Read more]