[GillParticipant]

Hi Sue

My mm husband, Stephen, came out from hospital over 2 weeks ago after receiving his 2nd SCT. He has not been very well since but we are plodding on.

Trying to get him on a Bendamustine clinical trial was mentioned after Stephen relapsed following his first SCT and his consultant was not aware that he had further stem cells frozen.

Sorry to waffle and talk about Stephen's situation but really just wanted to say that we (rightly or wrongly) have so much faith in Stephen's medical team that we trust them to come up with the best option for him at what ever step of this horrid journey he is at.

I agree with Min that "desperate means call for desperate measures". This cancer is quite unusual and nobody knows yet how to kick it into touch.

I hope that whatever path you and Michael decide to take it all goes well for you

Gill xx

[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

[JoannaParticipant]

Hi Sue,
That sounds like the regime that I was on although for the final two cycles I had bendamustine three out of four weeks. I was not on a clinical trial. I understand what you mean about the dex and I am enjoying getting my own personality and body back for this short period before I embark aqain on whatever chemo my consultant can come up with for me.

Jo

[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

[MinParticipant]

Best of luck for Michael, hope it works. don't know about the Dex at lunchtime though, bet he is still awake now with it! Cant beat talking to the TV, doesn't answer back, bit like my dogs!
What else does he take with the Bendamustine? anything we haven't heard of before? Peter is recovering from his mega dose of melphalan and no doubt will just start to feel good when they kick him with it again. LOL
Cant get him out of bed much before lunchtime and and he's back again at 10 so has to pack loads in to his short day, but at least eating really really well.
Best wishes to you both
min

[mhnevillParticipant]

Hi all

Have one of you who know Gaye better thought to try and contact her off group?

Do hope all is well with her.

Mavis

[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

[MinParticipant]

Oh Dear Sue,
I think you need to get him to take the Dex first thing in the morning so its worn off by bedtime.
Peter had just one dose of melphalan it was a mega mega dose. If you imagine when you get a dose for a stem cell harvest your given a 15% ratio per square mtr of body mass and he was given 70%. not quite the same quantity as for a stem cell transplant. But he will be having the full dose in a few weeks time but he will get his last lot of stem cells back then too.
Meanwhile all he takes is thalidomide and that makes him sleep like a baby.
I on the the other hand might as well be on dex as I am awake half the night. Ho Hum!
Love Min

[TinaParticipant]

Hi Susannah,

I sincerely hope the Bendamustine works for Michael and he doesn't suffer too many side effects. Patrick's infusion only took an hour- guess the time difference must have something to do with the trial.
Have you thought about suggesting a PICC Line for Michael? I really regret not pushing for this for Patrick as it was an almost painless procedure and avoided the serious pain and anguish he suffered due to his collapsed veins.

Love Tina X

[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

[TinaParticipant]

Hi Susannah,

The PICC line is similar to a Hickman in that it is used to take blood and give chemo etc. It is inserted into a vein in the arm usually just above the crook in the elbow. This is done under a local anaesthetic under x ray guidance. A very small tube is inserted into the vein and guided up into the chest area. I was with Patrick during the procedure which was straight forward, quick and he found it quite painless. The end of the tube is capped of into three sections and secured with a similar dressing to a canula. The area is checked for signs of infection on a regular basis. Well worth having one.

With regards to the bendamustine – I do not recall Patrick being tired and he continued to go to work every day. Platelets were low as well as neutrophils so regular transfusions were required.

I don't mind any questions you may have as I am aware that Patrick was further down the "road" that all the people on the forum and I may be the only person who can answer your questions.

The very best of luck to Michael

Tina

XX

I so wish the PICC

[brochoParticipant]

Hi Susannah I just want to add my vote for PICC lines they are great!! Quick to insert and as Tina has said painless Also they are completely covered so less risk of infection than with a Hickman. I have had 3 so far and none have given me any problems , so much easier than searching for veins in obscure places I hope the treatment goes well love Bridget x

[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

[TinaParticipant]

Hi Sue,

How did you get on Yesterday? Hope it was a positive visit. When I think about it Patrick did have some sleepy days but you are probably right in thinking it could be combination of low red cell count and all the treatments Michael is having.
Hope he is feeling little better.
Regards
TinaX

[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

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