Hi All

after reading these posts the old program your life in their hands come to mind it makes me shudder when I hear these tales. My GP sent me home to take paracetamol "you have a virus" I collapsed next day my husband took me straight to hospital with double pnuemonia and renal failure. They all seem so callous about it why did some become…[Read more]

Hello Wolf

It seems you have been doing very well on Revlimid and a low dose of DEX I always wonder if we need these massive doses of DEX they seem to give us
did you have a SCT at any time in the last 8 years
thanks for posting
Love Jo 😉

Hello Christin
So sorry to hear about your dad hopefully the hospital will get on top of his pain as you will see from posts on here there are lots of things to help
also the Velcade some people respond quicker than others but if that doesn't work there are are couple more options for him.I had a rash with my initial treatment it turn out to be…[Read more]

Its old hat for some f the regulars here but I was diagnosed with Secondary bone cancer, primary unknown and that prognosis stayed with me for 14 months. They tested for MM but only for heavy chain, missing the urine test, which my Nottingham consultant called a 'medical student level mistake'. After just 3 months my local hospital passed me…[Read more]

Hi
Thought of some more stupid remarks,
When Slim was in A&E,being sent home,I pointed out his bp 60 over 40 told it did not matter!!!!!!
|Fathers Day went to barby,first time out with people for a long time,daughters sil,came over saying Slim you look rearly well,I expected you to be looking,ill and grey looking,did not comment on his 5inch…[Read more]

Hi Min
How are things going with Peter and yourself,is he starting to pick up ?
Have you far to travel to hospital ,It all takes so much energy,It is suppose to be a nice day today,although its raining right now,lets hope the sun comes out,I find things all ways seem a little bit better on sunny days.
This is just to let you know,I am thinking…[Read more]

Poor Peter and poor you too Min,

There can be no excuses for such poor care, not being flagged as neutropenic is detrimental care and someone should be held to account. The one thing Peter does not need right now is infection and they should be taking every precaution… so let's hope they can sort his neutrofils out sharpish so he can carry…[Read more]

Hi Min your post just goes to show professionals are just as capable of stupidity as the rest of us!! The scary thing is these people literally have our lives in their hands so I do expect more from them As for the professional arrogance that doctor showed in not considering that just possibly Peter may have myeloma and doing a simple test they…[Read more]

Good luck Angelina glad you have decided what to do,if your sil says anything you tell her straight,she would not be able to walk a mile in your shoes. until you are going through this thing,no one has any understanding how it is.Can I say now you have decided to do this,make sure you put something in your boxes that has John smell on it,sounds…[Read more]

Hi Jo got a whole bag of new painkillers yesterday at clinic , so will have to see if they work !!Hard to know what Revlimid is doing for me as my paraproteins dont tell the true story( little fibbers always read low even when myeloma is on the rampage!) I have to have frquent mri scans to see whats going on. Lucky you werent at clinic yesterday…[Read more]

Hello Bridget

are you ok how did you get on at uch is the revlimid working for you
much love jo xx

Hello Min

So sorry to hear about Peter he is going through the mill lets hope all this leads to his second SCT you must be exhausted are you getting any help at home with dogs etc if you are at the hospital all day.He is in the right place though because a bad chest infection could lead to pnuemonia so its good the hospital have got it all in…[Read more]

Hi Min I have had you and Peter on my mind all day just wondered if he has had a better day today Are you looking after yourself too , I hope so love Bridget x

Good to hear your treatment has worked good idea to have a holiday it will set you up for the next SCT really good luck with that
Love Jo:-) x

Hey Mai & Bruce, I missed this somewhere aong the way…

Great to hear you playing, sounds excellent… 🙂 😎 makes me want to cut and run to Cornwall… if only it were so easy.:-( .

Keep up the good work… and hopefully we might meet up somewhere soon.

Dai.

Hi Keith,

I am surprised to see that you had to go the full max with Velcade but if its brought you in sight of your 2nd SCT then it will have been worth it.

I am fortunate that it seems I might achieve CR after 3 Cycles after a dramatic plunge from my starting point of 264 kappa light chains down to just 13 after 2 Cylces… but that's…[Read more]

Hi Eve how you must have wanted to give him a clout!!A similiar thing happened to me when my youngest daughter was diagnosed withCystic Fibrosis , someone who I thought was a good friend said it would have been better if she had died!! I have not spoken to her since!! How old is your grandson? It makes me so cross when people cannot see further…[Read more]

Hi MaRi

I just cannot imagine it,London to Brighton,56 miles is it,with that great big hill you have to ride up,it gives us so much hope.he must be fit.
Thank you for your post,my husband is on his 5th cycle of ctd and had complications with pneumonia,some times I just cannot see any progress,and then some one posts with such good news and its…[Read more]

Hi Keith
I think we were all wondering what happened to you,but to scared to ask,as we new you were going through a bad time,but its lovely to here you are doing well.
Have a good break away from it all,wish i could do the same [I am jealous ] Best Wishers Eve