Hi
I’m very sorry to hear about your dad’s problems.
Like Tom and David I was warned of the danger of dental extraction whilst on Zometa. I was told before any extractions I had to stop Zometa for 3 months and also not start again till 3 month post extraction. I was also given a leaflet to take to my dentist though she knew about it already. Your…[Read more]

Hi Carol.
My paraproteins started at 49 in Oct 2011 tried all the usual treatments and my PPs wouldn’t go below 35 I’ve now been on CRD for 22 cycles now and the lowest reading I’ve had was 12 for one cycle only I’ve been around 20 for most of the time. No chance of auto or allo transplant for me my last reading was 31 so movement to my next…[Read more]

Hi David
That’s great news David.
From what I thought I knew about Revlamid I thought it was a slow burner and it takes it’s time setting about its work. I’m sure it took 3 or 4 cycles and the introduction of cyclophosphamide before it worked for me. So hopefully your readings will go even lower.
Good luck

Every day is a gift
Open it carefully

Andy

Hi Jeff.
I can’t tell you wether partial remission is as good as it’ll get for you. I think 6 cycles is the norm for CDT and I think they’ll be trying Velcade to push your paraproteins down a bit further before going onto SCT. Velcade works well and quickly in most people and I’m sure it’ll get you to SCT if that’s the route you want.
I had…[Read more]

Hi Maureen.
I’m glad to hear Ian is out of hospital at last. I hope his wound heals quickly and you can both start enjoying a “normal” life the best you can.

Every day is a gift.
Unwrap it gratefully

Andy xx

Hiya Pauline and Mark, along with other forum followers, I would like to add my welcome to you. Not a place any of us want to be, but here we are, you will get a lot of support from here, lots of experience and knowledge.
For my part I was diagnosed in march 2012, I was lucky it was a very quick diagnosis, thanks to my persistent GP, I had no…[Read more]

Hi Pauline and Marc

Well a warm welcome to the forum, pull up a chair and get comfy, great folk on here that can and will help you both get through this.

Yes I got a bit "Blown up" when I first had my first line of treatment CTD then SCT all in December 09, and as of now doing great and Drug free 😀
Stay well

Tom Onwards and upwards…

Hi Wendy

I read your blogg and you have had a terrible experience. I remember feeling elated when I read that a mistake had been made in your test and cannot believe that such a terrible mistake could be bade. I hope that that your next appointment brings better positive news.

Hope your mums wrist is ok

Best wishes Jean

Charlie & Mary

Am pleased all is well, and I bet you loved looking after the Kids.
as for the Levels I know nowt about them am sorry to say.

Keep well

Love Tom Onwards and upwards x

Keep on keeping On and you stay well, am sure some folk have escaped it with little side effects lets hope you are one of those.

Tom Onwards and Upwards xxx

Hi Gill and Dave

Am pleased you mad your choice, and I hope you get many a year out of it.
Good Luck in your Road to Remission.

Tom Onwards and Upwards x

Hello Dave and Gill

I know it's a very hard decision to make at the stage you're at. When I was told that my CTD treatment had knocked my PP count down from 46 to "a trace" in 6 months, I wondered if I should delay my SCT as I couldn't see how using my first batch of stem cells up could benefit me at that point.

However, I then thought "My…[Read more]

Dear Dave & Gill. I am sure that you have made the right decision. I hope it all goes ahead inthe next couple of weeks.
Remember if you have any fears about the transplant process or any worries about the after effects, just ask the forum.
Good luck.
Regards
Tony F

Hi Mothas

Unfortunately I do not had a good view of the Mersey. But the rooms with the view are half the size of mine so I decided I would much sooner have the space.. 🙁 SHAME

MANDY X

Good Evening everyone

Well I will have been in for a week tomorrow and to be honest I don't know where the time has gone.. I had my SCT on Thursday and so far – so good!! Couldn't feel better if I tried. Its a real weird feeling laying/sitting here waiting to feel poorly.. when you just feel good.
Sorry I have not much to tell but it really…[Read more]

And a Thanks from me Alex, I always wondered what is the best way to help bones when they are dodgy as my Grandkids call them.

Tom Onwards and Upwards 😎

Thanks for the Link Tom will have a read Lata

From one Tom to another, Onwards and upwards

Hi Eve
Well for me I think NICE has got too tight a hold on the why's and wherefore of peoples treatment.

I don't know how many are on the NICE panel nor how much they get paid?? but that must be coming off the central funds, I say let our Dr's and Consultants say what treatment is best for us.

Tom Onwards and Upwards xx

Hi Dick

It's not just sad,it's wrong!!

The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.

My husband had on trials MX1 was randomised for…[Read more]