[susannahParticipant]

Hi Bridget

So pleased you are not having to many side effects from the Bendamustine, since Michael came off Thalidomide he hasnt felt quite as tired. Hes having more problems with the Bendamustine, hospital today no treatment hes nutropenic and his platelets are very low, so back again next Friday (hes having GCSF injections again)Hopefully if his PPs have remained the same he will still be able to have it, bloods permitting.

Love
Sue x

[susannahParticipant]

Hi Gill and Jo Thanks for the kind words. I agree what you say about sharing things, trouble is im more of a i will do anything to help kind of person, not good with words. So if any of you want your garden doing, house cleaning, dog taking for a walk, shopping then im your man (so to speak)

As for the redundancy, well ive been there over 25years so im not at the top of the list!

Suexx

[susannahParticipant]

Hi All Just wanted to thank you all for your support. Bridget dont ever think you are moaning I think youre all such brave people who go through so much

love
Sue x

[susannahParticipant]

Hi Tina Just read my post back and it doesnt make any sense, shows you what frame of mind I am in at the moment, it should read, I find it hard to post negative news!
Its a good job I dont know how to put a profile picture on the site, I think the black square box says it all!
Sue

[susannahParticipant]

Hi Tina Sorry for not posting for a while, the last few weeks have been quite hard. I have been going to work wondering if there will be a job for me by the end of the day, I work in local government, and everyday people are being made redundant, thing is I wish it were me, and then I could spend more time with Michael. I find it hard not to post positive news, especially about a new treatment, but Michaels treatment doesnt seem to be working. His consultant took him off Thalidomide a few weeks ago because it has made the PN in his feet much worse, she lowered the dosage of Bendamustine, but he is still getting the side effects he had when on the high dose, one of them being unable to control his bladder, which has really upset us both. Then 2 weeks ago she gave us the news that his PPs had not moved at all, so we will learn next Friday if the drug company will let him stay on the trial.
Michael stays very positive, and at the moment hes the one keeping me going
he never complains and like Patrick always manages to make me laugh

Thanks Tina for caring Patrick was a very luck man

Sue x

[susannahParticipant]

Hi Keith Good to hear from you, and to know things are going well (apart from the Itch)

Best wishes
Suex

[susannahParticipant]

Hi Eve and Helen A year on probably the longest year you have ever known,
your lives changed for ever, but hopefully things will get better for you both Dont feel selfish Eve Ive been married to Michael for 30years and hes had MM for 15 of them, how lucky he has been people say, thats not what I say,its robbed Michael of his life, well both of us really, he was a serving police officer 6ft 2ins never had a days illness in his life then along came MM. But looking back weve had good times and in a strange sort of way its brought us closer together, we have done things that we would have probably put on hold I agree with Dai its not possible to ban MM from your thoughts entirely but you learn to put them to the back of your mind
Good luck on your journeys
Love
Suex

[susannahParticipant]

Hi Another long day at the hospital,but not such a bad one. All Michaels bloods were very good so they went ahead with a lower dose Bendamustine and lower dose Thalidomide. We also had a long chat with the trial team,there are couple of trails on at the moment one is Pomalidomide, derivative from Revlimid, the other one a derivative from Velcade which id never heard of, so there seems to be lots on the horizon for MM at the moment
Hi Tina Michael has been on Warfarin for 2 years he has INR test every week
because of the low platelet problem, but it is quite worrying as he bleeds very easily.
Must go dex calling
love
Sue

[susannahParticipant]

PS Michael has always found Dex to be a nightmare, but it seems to help with
the fatigue xx

[susannahParticipant]

Hi Bridget Im pleased a decision has been made and your starting treatment, your post has jogged my memory (whats left of it) Michael is on warfarin, but thats because hes already had 2 dvts, and the other thing about the bloods not recovering very well, Michaels started on GCSF injections twice a week

I had to smile when i read the piece about constipation,Michael is on pregablin which makes him very loose so thats one thing in his favour!
Just want to wish you well Bridget,Let you know how he goes on tomorrow

Love
Suex

[susannahParticipant]

Hi Eve Its my husband Michael that has MM, like yourself I have always been very open about what the future might hold. Im the one with all the questions, and I do want honest answers. We have been down the no more treatment road a couple of times (before Velcade and Revlimid were availiable) its a terrible place to be in but we had to deal with it.Before Michael was accepted on the trial he had a good 18months on Revlimid, we both thought that was it again, but our consultant put Michael forward to Nottingham City for the Bendamustine trial, its a 40mile round trip twice a month but if it works, well! Its not been without complications though, the treatment is randomised, the computer decides what dosage of chemo he has, unfortunately he was given max dose for 2 weeks which did alot of damage (admitted with neutropenic sepis twice) to cut a long story short after 2 months the consultant can reduce dosage, which she has done so he has his second dose at a lower rate tomorrow,he has had some side effects which he is finding hard to cope with
The treatment can last for up to 9 months, that depends on his PP levels which at the moment there is no change.The trial team are great and cannot do enough for us, but they to are in the dark and as to what side effects etc will be.

Its good to talk about it and I will keep you updated

Best Wishes
Sue

[susannahParticipant]

H Eve My husband is taking part in the trial, hes on bendamustine thalidomide and dex. He started at the end of July, I did post on here at that time under treatment, i have updated a few times, but as you say there is no one else on this sight at the moment on the trial, so I dont have anyone to compare notes with.I do post if I think if it will be of any
value. If theres anything i can help with im here (for anyone)

Sue x

[susannahParticipant]

Hi Gill Im sorry to hear of your bad news but i think your oncologist is out of order. How does he know if Revlimid will work or not, Velcade didnt work for Michael (hubby) and we had to fight for Revlimid as it wasnt availiable in our area at the time, but it was never mentioned that it wouldnt work, infact Michael was on it for 18months and had CR. So hang in there. Even now hes on a clinical trial as he has had everything that is availiable, and our consultant has told us even if the Bendamustine hes on doesnt work there is still other trials going on.

BestWishes
Sue

[susannahParticipant]

Hi Bridget You too have been through the mill,(just catching up) Revlimid was good for Michael I think why this treatment has hit him hard because he felt so well on it. We had a long chat with his consultant yesterday, she blames the very high dose Bendamustine for Michaels problems, shes hoping now thing s will settle down now its been reduced by half. Its the Dex he doesnt cope with, but hes had that problem with all his treatments, but at least he only has them once a week. Is it a trial youre going on Bridget, or do you live in the right area to receive it without? Hope your a little more pain free now.

Hi Tina They wont fit a PICC, they said it wasnt something they did on a trial. That was the worse part of yesterday no one could find a vein,

[susannahParticipant]

Dear Tina Im so sorry I havent been posting over the last few weeks but this is the first time ive sat at the computer for weeks. Michael has been back in hospital with pneumonia,my daughter was rushed in about the same time (the other end of the County) and ive been doing my best to hold a full time job down, but there is a light at the end of the tunnel. Michael will, fingers crossed, be having Bendamustine tomorrow, its been delayed because of infections and low blood counts, but he saw his consultant last Friday and she started him on GCSF injections, apparently after 2 months has lapsed the medical team can intervene, and he will be given a much lower dose so hopefully he can get back on track My daughter is being well looked after, so we might get back to some kind of normality, if you can call it that.

I must add that I was really touched by your post, thank you for thinking of me. Having been off the site for a while I just dont know were to start to catch up on everyone,Im probably the only one but thats why I liked the old site it was so much easier to write something that could easily be seen. So I would just like to wish everyone well patients and carers

Love Sue x

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