Thank you all for your replies. Ali your message cut off and didn't get what your mums levels were. I would be interested in kmowing what they were. Hope you mum is doing well
Love Jean x

Hello Trish

I am on my first relapse only had CDT before now on Velcade seems to be doing ok not many side effects it has a great reputation as a drug so i hope Peter does really well on it
Love Jo x

Hi Megan thank you for that. It has eased me a bit. I will definitely get unto Maggie / ellen. I am so worried – frank seems to be so laid back about the whole thing. I'm not sure what is going on his mind. It's because of the long wait – he has had time to think and he's getting info from a registrar instead of from the boss (consultant).

I…[Read more]

Hi Maureen,

I just thought I'd drop a line on the depression side of all this. It's not surprising you both feel very emotional and depressed at times, it's a horrible experience and particularly after it's dragged on for a while and with you having to be separate and Ian not mobile it is a very hard situation you're dealing with. It's ok to…[Read more]

Hi Trish,

So sorry you are having to go through this. I'm on my first remission and even already the smallest worry about my results generates huge waves of worry/depression about relapsing so I can only imagine how demoralising it feels, and how confusing to enter a new world of having to make choices.

I think others are better informed but…[Read more]

BUMP

Ps Vikki good luck with BM assessment 🙂 hope it is great news
Jean. Xx

Dear Emma
I'd speak to your mums GP and explain the situation, and speak to a McMillan advisor as soon as possible, as Tom says she can't be sent home unless they are confident she can manage. So lots of assessment to be requested, home visit by both physio and occupational therapist – this will take time – might give more confidence for both of…[Read more]

Thanks Vikki and Ann for your good thoughts. The forum will be third to know when frank gets a date, us, our sons and the friends on the forum. Best wishes to you all
Love Jean x:-D

Dear Ann

Great to hear from you and what fabulous news 4.6 million. Good on you Pete. Everything crossed for 18th. Frank has been waiting since December for a date and nothing. I'm a bit scared that he might relapse before he gets a date

My best wishes to you both
Take care
Love Jean xx

Hi Janet

It so so good to read of yourt journey. Well done you 😀 my husband is waiting for date for SCT so it is great reading positive things. Long may it continue

Love Jean x

hi DIA

Who knows its all a mistery to me when i was admitted with temp of 39 my white cells were 12 Hb9.5 only had a cold to start with liquid paras and Iv ANTIb,S soon bought it down why it had not happened before when I have had a cold didnt happen on CDT so perhaps its the Velcade no explaination It happens was the reply no real clue as to…[Read more]

Hi Wendy

How are things going,glad to see India is still on the cards,but I would recommend you go Vedge for your stay,they have some lovely dishes,if you Like vedge they have some lovely food.

Have you started Velcade yet,hard to keep in touch now as I try only to look in these days,looked in today and saw lots of blank spaces,wrong that…[Read more]

Hi Ozzy
Slim use to get grumpy on the dex,I would have given anything for him to shut up,so I can understand how Gayle feels. LOL

Soon be over,apart from that is the Velcade working for you hiccups were the worst thing,still is very loud and we can be any were,its 8 months since any chemo treatment and the last lot was for SCT,but those…[Read more]

Hi Maureen

So glad things are looking up for Ian,lets hope it will not be to long before he can forget the wheelchair.
When Slim used a wheelchair it was hard to see how he would start walking normal again,but he did,it was the summer so it made it easier,I use to take him out very early to begin with,had extra weight because the dog wanted to…[Read more]

Hi Ozzie
I too am on Velcade had no real side effects but have been having it once a week for four weeks with a week off this regime might suit you better have had two weeks off because of chest infection temp of 39 two day in hospital but been good other wise perhaps your consultant will change you to once a week
Good Luck
Jo

Dear Jean, Pat and Dai
How lovely for all of you, they all look so lovely, I don't have any grandchildren but they must give you so much pleasure.
Love Helen

Hi Jenny
Sorry to hear you've not been too well, I had cyclophos and Revlimid with dex as my induction treatment and it worked very effectively for me, I did feel very rough with it though, not so bad with just the Revlimid now, though it does make me quite tired. Are you heading for SCT?
Love Helen

Thanks for that Dai. You eased my mind as well. Franks. PP plateaued at 2 and is waiting to go in for SCT. I was so depressed that it did not reach 0. Feel a bit better. More info from you and a registrar than we have gotten from consultant in 6 years 🙂

Vanessa hope all goes well for Stewart. Keep us I formed – as Frank is waiting it is good…[Read more]