[susannahParticipant]

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

All my love
Sue

[susannahParticipant]

Hi Keith So pleased everything is going well

Good Luck
Sue

[susannahParticipant]

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

[susannahParticipant]

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 day again, left home at 9am and didnt get home until 4pm.
I mentioned the PICC line, they said they would look into it and let us know for next time.
Steriods have kicked in seem to have more of an effect than they did last week, but otherwise hes ok
Love
Sue

[susannahParticipant]

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 his counts are low, we will have to wait and see. Its just not like him to sleep most of the day

Love
Sue

[susannahParticipant]

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

[susannahParticipant]

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

[susannahParticipant]

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

[susannahParticipant]

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 very well, I dont know if this is because he is on a trial. He took the dreaded Dex about 1pm
hes ok well I say ok hes in bed talking at the television. Anyway early days he was given a shed load of pills to take at home, so we will see what tomorrow brings
Take Care All
Sue

[susannahParticipant]

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 citalopram do you have to get them on prescription? my doctor gave me amytriptyline, only 10mg but they make me feel like a somby, not sure if thats good or bad under the circumstances, perhaps i'll stick to the red wine for a while longer

Take care all
Sue

[susannahParticipant]

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 trials at our local hospital) Its such a big place and quite a good 40 mile round trip, and at the moment we dont know anyone, but im sure that will soon change

Suexx

[susannahParticipant]

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

[susannahParticipant]

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 good results came off after 3 courses, Revlimid much better. Starting Bendamustine, Thalidomide and Dex in a couple of weeks. Consultant did say if any problems there is also Pomalidomide he can have, so we do have a life line at the moment. He does have extensive bone damage in his spine skull and ribs, had to have many hours of radiotherpy but he gets about ok. He has 2 types of MM but no kidney damage Hes so positive about all his treatments thats probably his way of coping, im different I walk miles with my dog talking and sometimes have a good cry,otherwise I dont know how I would cope.

Dont be sorry about the questions Min only wish I could help more

Take Care
Love Sue

[susannahParticipant]

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, its so hard to keep it all together. Enjoy Yorkshire, Michael and I are going to Whitby for a few days next week before he starts his clinical trial , may see you.

Love Sue

[susannahParticipant]

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

Love
Suex

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