Hi Helen

Are you sure you're not a mathemetician? I will ask the consultant what Ian's light chains are on both kappa and lambda. Thanks for the information.

Ian's were initially 4000 and now down to 52 after 3.50 cycles so he has had a superb response. Hope he is in remission a long time.

Love Maureen

Hi Jan

Thanks for the information. Ian's light chains are 52 and the treatment has stopped. He is receiving zometa every 3 weeks at the moment and being monitored by the NHS. Consultant said 52 was near normal bloods. What is normal? SCT is ruled out at the moment until we see how much mobility Ian has.

Mauren

Hi Helen

Glad that you haven't got blood clots youn will be so releived.

Maureen

Hi Eva

At last things are getting better. The shingles have now gone and I have had some respite this week as I have only gone in once a day as Ian has had other visitors. The consultant said Ian had an excellent response to treatment so I hope he has a long remmission.

Did you get any maintenance treatment after CDT? Should we ask for…[Read more]

Hi Scott

Thanks for your advice. Should we ask for maintenance treatment as we have private insurance.

Let me know how you get on on Monday.

Maureen

Hi Scott

Thanks for your reply. I asked the consultant if Ian would get a maintenance drug and he said no but Ian received zometa iv yesterday and he will get it again on his next visit in May. Is this not a maintenance drug>

Hope you can decide soon whether to go for an SCT but it is a big decision and some people get years of remission…[Read more]

Hi Tom

Hope all goes well with the SCT and you get a long remission.

Maureen

Hi Eve yes hindsights great but my brother said some years ago it comes later sadley so all you can do is what seems best at that time.

In hindsight for me i wish id been a bitt fitter post asct then i would have pushed harder about the nasty leg pain and pushed even more than i tried for a post sct bmb to see whole picture,slim has you to do…[Read more]

Dear Eve and Helen

Eve mine showed increased uptake in my shoulders and clavicle area ( i have rheumatoid there) and they could tell the difference on pet from the more than 5.6cm lesion in femur where i get pain and the mega uptake there so they are not being accurate… keep pushing i had to change consultant and so glad as ive crashed now…[Read more]

Dear Andy

What wonderful ,superb long awaited news ,hurreh.
If it keeps working you may be able to stay on rev a few years = as good if not better than transplant and without the tranplant nasties

wishing you all the luck and wishes of next time good results too 🙂

best wishes
Sue

Hi Scott

Ian has had treatment stopped to let the bed sore heal but consultant thinks that 54 is near normal and doesn't think he will get more treatment. A SCT is not on the cards at the moment until we see how mobile Ian can get. Did you get maintenance treatment when you stopped treatment?

Hope your light chains come down some more.…[Read more]

Hi Tom

Sorry you have been poorly. Hope you are wrapped up in your onsie with a G & T.

Take care of yourself.

Maureen & Ian

Hi

My husband started on CDT but had to stop to let a back wound heal. He wasn't tolerant of it first time but when they restarted after 6 weeks he was fine. His light chains are now 54 and he has had an excellent response. Give it another try as it really works.

Maureen

Hi Eve

I had asct similar time to Slim I think (May 2012)
I changed consultant in Feb as my old was was saying come back in 3 months despite nasty inc bone pain,He had finally booked mri but……. new consultant spoke to radiologist and they decided i needed PET scan as i had had lesions in arms and femurs before and PET would show whats…[Read more]

Dai

Hope you get this sorted out soon. Get an opinion from another consultant. You are quire entitled to do this.

NHS bah

Maureen

Hi Jo

Sorry to hear you have been unwell in hospital. Hope you are feeling better.

Maureen x

Gill

What a lovely photograph and Stephen looks so well. Look back on the happy times. Stephen would want you to enjoy life.

Sending love

Maureen x

Hi Andy

Great news. have a few drinks.

Maureen & Ian

Hi Clara

We live in Dunblane in Perthshire. We don't know if my husband will get a SCT.

It is a horrible disease and hard to cope with. How is your mum coping?

Maureen