Hello Pauline and Marc
Welcome, my journey with this bunch began with the Myeloma xi trial in February 2011, I had RCD and SCT within 6 months and then had around 18 months remission. I've just recommenced treatment last week for relapse, but I'm good. Back to work tomorrow.
Hang on in there while you get used to the new life you have.
Love…

Hi Vicki
Thank you, I'm doing quite well really, tired of course but I'm feeling ok. On the dex down day so have sloped off to bed leaving the husband and neighbours carousing in the garden, I feel they have had enough exposure to my dexilicious behaviour over the weekend that they need a few hours off!

I have always been able to knit, and…[Read more]

Dear Wendy
What a blow, are you having BMB as well soon? I'm hoping there is still fluctuation room in all of this upping and downing.
I am glad you enjoyed Paris without this knowledge though, the little holidays are islands of normality. Fingers crossed for you.
Love Helen

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

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]

Sadly Eve I think you could be right but I live in hope! You make a good point about noise, I'm much more sensitive to Noise now as well, I'm up looking for the source of irritating noise at all times and also get driven nuts by music, which in a family of musicians can be a little wearing. i wonder if that happens to more of us, if so it would…[Read more]

Dear Eve
I'm sorry I missed this end of your thread, we have no bluebells up here! I have those Spanish ones in the garden and the aren't out yet. So I never read the last stages of it.
Anyway I am sorry to hear about Slim, what an anniversary gift! He and I have now had 2 .4 years on the treatment wagon. It seems no time at all really.
I hope…[Read more]

Hi Mandy
Sorry I haven't caught up with this either but good luck. Tom is giving sound advice as usual , especially about the eating! Eat as much as you can in the next few days, you will need all the energy you can possibly store. The ill bit for me started 4 days after my cells went back and my hair fell out very slowly from 4 days after that,…[Read more]

Hi Helen

Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!

The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they…[Read more]

Dear Jean, Eve, Tom, Ali, Megan and David
Am now putting all comments re clinics in a letter, and have contact name for someone to address these issues with, hurrah for dex! 🙂 and Eve I have new iPhone for birthday so have note pad with enormous memory and sat for 2 hours today making copious notes. I did tell them what I was doing and I…[Read more]

Hi There
Just to add to this, when my sflc's went up a bit in march my consultant said he would wait until we had confirmation of my BMB result before relapse was determined. Until he decided i was relapsed, i was in remission! BMB was after the third definitely higher result, they crept up over the previous 6 months in a continuous slow rise,…[Read more]

Hi Margret

Welcome,
Bonefos question I cannot help,but I was surprised you have been a drug so long,you do not give a great deal of detail,have you been Diagnosed with Myeloma or are you looking for an illness for symptoms????

With the drug you are taking plus quantity and length of time,it must have some effect,why have you been on them…[Read more]

Thanks Tom I appreciate that. Will order paperback

Jean

Hi Tom

I had listened to an article on diet on radio 4 by a presenter who has MM and they talked about Mediterranean diets (Wendy posted link on Facebook ). So when i read your post i was very interested so I went on to Amazon to order the kindle version of it and this was the message that popped up

This book is currently unavailable…[Read more]

Hi Maureen

Good to hear from you,it will do you both good to get away from hospital,I use to sneak Slim out a lot,as he hated the hospital and they had no day room,We use to spend a lot of time in the chapel .

I married Slim after 30 odd years together,are anniversary is 24 May married in ITU,we tried for 14 February but Slim was in…[Read more]

Tom
I bet you both can't wait fingers crossed
Love Jo x

hi Jean

hope all is well for you and Frank havent heard from you for quite while
Lovc Jojo x

Hi Tom

I am very thick skinned,and I do not just mean I am fat.but I have a very soft centre. Luckly Slim loves me,he would be the first to tell you he loves never having to worry about anything. (Control freak ) never,just cannot abide a job not done properly.

Helen if you are taking up knitting can I put an order in for a cabled…[Read more]