Hi Just thought Id update you on Michael, he was admitted to hospital today, I rang the trial team at 9 am this morning as he had a temp of 39 and was shaking, they told us to report to the day centre which we did. After a very long day they found him a bed at 6pm i returned home at 8.30 this evening Michael is neutrpenic and has an infection…[Read more]

Dear Sarah Another waste of a life to this B—– illness my heart goes out to you and your family

All my love
Sue

Hi Keith So pleased everything is going well

Good Luck
Sue

Hi Sarah Not posted for a while, I am so sorry to read Gordon is so poorly
you must feel numb, my heart goes out to you.

Take care of yourself
Thinking of you both
Sue

Hi Tina All his bloods were borderline, so they went ahead and gave him the full whack, but his consultant did say it would be unlikely he would be given the next dose, which is in 2 weeks time, he will probably need some GCSF injections. ( they bring back some memories) They are all very nice and cant do enough for us both but it was such a long…[Read more]

Hi First question on the list for Friday is can he have a PICC line Itwould be very good anyway as apart from his bloods at the hospital he has to have an INR test every week as hes on Warfrin and the district nurses have the same problem

With regards to his tiredness I wonder if its just the blast of treatments he had on Friday or it could be…[Read more]

Hi Tina Thank you for replying. What is a PICC line is it something like a hickman? Did Patrick sleep alot after his Bendamustine.Sorry for all the questions I hope you dont mind,but they really havent told is what to expect, probably because they dont know

Love Sue

Hi Min Michael takes Thalidomide and DEX and the other usually stuff . He seem squite well this morning, very tired. Me well ive been up all night , first Michael was cold then hot, then hungry,about 4 oclock wanted to go for a walk, I might have got some sleep if he had!
How often does Peter have the Melphalan?

Love
Sue

Hi Christin and Meike Sorry to hear about your husband/dad, my husband Michael was diagnosed at 45 years of age and he was 60 in April this year

Stay positive
Love
Sue

Hi All Just to let you know Michael started his Bendamustine today, what a long day. I think every nurse in the hospital tried to get blood from him but his veins were not having any of it, eventually they managed. The infusion took about an hour and a half then he had to sit for an hour just to see if he was ok. I must say we were looked after…[Read more]

Hi Sarah So sorry you had such abad time away, I did think about you both while in Whitby. Michaelwas just the opposite he felt so well, infact he even thought of not starting treatment again tomorrow, Couldnt get through to him he wouldnt feel well for long if he didnt, still it was good to have some normality even for a couple of weeks.

The…[Read more]

Hi Gill Sorry to hear Stephen is not well, as I remember it took Michael a while to get over his second SCT so fingers and toes crossed for both of you.
I know what you mean about treatment, we really dont have a choice, I think what really concerns us this time is that we have had to move hospitals and consultants ( as they dont have clinical…[Read more]

Hi Joanna Sorry to hear Bendamustine has not worked, to be honest Im dreading the trial Michael has infusion twice a month thalidomide daily and dex 4 timeas a month 40mg, its the dex i fear it changes him so much.
Were you on a clinical trial?

Sue

Hi Sarah Michael doesnt start with the dex until a week on Friday otherwise you would probably her us shouting. When i here the word dex i freeze Michael has such a reation to it, i dont mean rashes etc but a personality transplant, hes such a nice man, bit that horrid stuff changes him completley.

Hi Min Michael has had Velcade, but not…[Read more]

Hi Sarah There is life after SCTs I know alot of people on this site SCTs are still an option, but my husband had his second in 2003 relapsed in 2006, good result for a second, but what im saying is try not to dispair there are alot of good treatments to follow. Its so difficult when your a carer,I know were not ill but sometimes, Iknow for me,…[Read more]

Brilliant news Keith Enjoy your time away, and look forward to post SCT with no treatment, and a some normality

Love
Suex

Thats brilliant news David, enjoy your trip.

Sue x

Hi Min This is one of the things that really worries me with Michaels trial as his consultant told us this is one of the side effects they know about. Please to know Peter is out of hospital , whats his next stepin his treatment

Sue

Hi Tina Lets hope so , she has been so supportive to so many people on this sight for a long time.

Sue

Hi All David your post brought a smile to my face thank you, enjoy your holiday, Tina and Roz thank you for your replys they have helped alot. Michael has decide to give the trial ago, but we do have a few more questions we need to ask first.
I wondered if anyone had heard from Gaye as I know she is on Pomalidomide

Thanks again for your support
Sue