Hi Michele,
Thanks for taking the time to reply. I am finding this a lovely friendly site. It is good to hear from people who know how it is. I had coffee last week with a girl from work, who said I look really well, which is nice to hear, but because you can walk etc, people think I'm cured (touch wood my kidneys have been ok this far). I am…[Read more]

Hi Eve

I appreciate you taking the time to reply Eve,thanks so much for the advice.
We feel like we did when Chris got diagnosed that horrible gut wrenching feeling, only worse because we had so much hope back then. I can't beleive that after melphelan the myeloma has not moved. What else is going to work if the strongest drug available…[Read more]

Hi Mavis,
I am new on here and still having a look round. Had to reply to this and say here here, to being thankful!:-)
Take care

Karen
x

Hi Eve

Thanks very much for that I'll contact Ellen to find out more about Muk5, I wonder why our consultant hasn't mentioned it ?
He only managed to harvest enough cells for 1 transplant so no chance of another.

Thanks again

Christine

Hi Eva

Thanks for that but we have been down that route Chris was scheduled to have a full allo in January 2013 he had a perfect match unrelated donor, but our consultant stopped it 3 days before he was due to go in as the myeloma wasnt stable enough and therefore the risk too great.
The mini allo has been ruled out this week as the the % of…[Read more]

Good read, I would like to hear the interview.
Good news about Red wine 😀

Hi Eve and everyone,
I agree, the failings are definitely in the GPs. I was having treatment for some months at a private osteopath based in my surgery. He said something was amiss with my back and went to see my GP to recommend he send me for a scan. My GP refused and just kept plying me with painkillers. All this happened approx a year…[Read more]

I was in the cell directly facing the kitchen. I think I was green cups, (chemo brain me!)

On the 6th June, I am on a clinic/consultant. at 11.25! But I am at the lower level.
My infusion is 23rd May. (day ward). The day ward staff are really nice, but is it me or does it sometimes seem a bit chaotic?
Take care
Karen

Hi Jean,

Thanks for a lovely welcome, I'm just about to put kettle on. Milk and sugar?:-D

Very nice to meet you, hope to share stories and rants in the years to come.

I have been on here all night, well a long time for me anyway>:-) .

See you soon
Regards
Karen

ps I was offered the maintenance drugs on my last visit by Dave, it was a bit out of the blue, and I declined as I want to give my body a rest as it has been battered.
Not sure if i have done the right thing though.
Regards
Karen

Hi TonyF,
I had my SCT on 11th Jan 2013, i was admitted on the 9th Jan> . I was discharched on the 28th Jan, we missed each other by a day. I know Drs Chapman and Barton, but my main consultant is Dr Garg, I seen her a lot when i went for my vertebroplasty to the Spire hospital (husbands cover through work), Dr Rennie did op, it went very…[Read more]

Hi TonyF,
Thanks for the welcome. Nice to meet you.:-) (bit of a smiley monster)
I hope there may be times when I can somehow help or support.
Regards
Karen

Thanks Etta,

I can tell already that people are friendly.

I put my story on my profile but will copy to here.

Thanks again Etta, nice to meet you. Karen 🙂

I am a 51 year old married mother of 2 teenage girls. Diagnosed aged 50 in July 2012, with Multiple Myeloma. Changed all our lives forever. We live in Rutland, but our nearest…[Read more]

Hi Eva

Thanks for the advice. I looked on the Dana Farber website and am going to order the recommendations for PN, will be interesting to see what happens. He is exercising walking, cycling etc so just got to carry on. He is qualified to teach hairdressing at FE level so thats one thing he may look at doing on a part-time basis.

We will get…[Read more]

Dai

Thank you for the advice. We do have plan B which is to erect a "Man Cave" at the bottom of the garden where Chris would invite select customers in to do barbering in one half and in the other half he would be restoring/buying/selling the second love of his life his beloved motorbikes. He has spent the last fifteen years building up a very…[Read more]

Dai

Chris's allo has been postponed due to rising levels in the space of time its taken to organise the donor etc.He has been admitted as an in-patient for intensive chemo last week and is now on a short course of Thalidomide, so we are keeping a close eye on the PN.

It has eased a little but it's doubtful that it will go away. It's a cruel…[Read more]

Hi Susan
Chris was on Velcade and symptoms were pain both dull and shooting in his feet and legs, fizzing in his feet and numbness but no weakness. Hope that helps but check with your doc as it needs keeping an eye on.

Christine