[TinaParticipant]

Dear Sue,

I haven't seen you posting recently and wondered how Michael was doing?

Love Tina X

[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

[TinaParticipant]

Dear sue,

Great to hear from you but so sorry you are being challenged in every which way, you must be mentally and physically drained. After Revlimid it appears that most MM sufferers are more prone to infection and I am sure you are very vigilant in looking for signs in order to act quickly.

Good to hear Michael is about to finally recieve treatment,how is he coping? Does he have a PICC line to avoid all the cannulas?

The very best of luck with Bendamustine, I hope it works as well with Michael as it did with Patrick.
Tina X

[brochoParticipant]

Hi Susannah wow you have certainly been kept busy!! I am glad to hear both Michael and your daughter are feeling better though but now is the time for you to look after yourself! Go and treat yourself to some pampering you deserve it! I will be starting Bendamuste in the next couple of weeks it was a choice between that and a course of heavy duty chemo( I have forgotten the name) but both the docs and myself agreed I am not physically strong enough to cope with the chemo and and any infections that might follow. So heres to a healthier and peaceful times for all of us love Bridget x

[TinaParticipant]

Hi Bridget,

Good luck with your Bendamustine treatment you are surely due some respite after all the pain you have been in lately. As I recall, at least with Patrick, there were very few undesirable effects with this drug.

Tina X

[brochoParticipant]

Hi Tina thankyou thats reassuring to know after Revlimid Although to be fair the side-effects with Revlimid werent terrible just a real pain when combined with Dex . Watch this space ! love Bridgetx

[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,

[brochoParticipant]

Hi Susannah I do hope the lower dose is better for Michael , all fingers and toes crossed ! I wasnt eligible for a Bendamustine trial as I am a non-secretor and the only way to monitor my mm now is mri and bone marrow biopsies The hospital does have a system though where if all the team agree then treatment can go ahead At the moment I am waiting to hear they have all signed off on it. I am amzed that Michael cannot have a PICC line , they make life so much easier and more pleasant , I wish resources like that were standardised throughout all hospitals Perhaps we should start a campaign? I am with Michael on hating Dex too but these last few weeks I realised it does have its good points too , when the pain was unbearable Dex really helped to calm it down for a few days at a time! Anyway all we can do is keep on going with the help of our lovely friends Onwards and Upwards!! love Bridget x

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