[DaiCroParticipant]

Hi Keith,

I had my second infusion of Cycle 1 on Monday (infusions on days 1&8) and apart from feeling tired and a little stiff and sore from all the sitting around I am not too bad… but it's early days and I am keeping an eye out for any side-effects that may creep up on the blind side. I still have my appetite and my C: Diff seems to be under the control of the antibiotics so I am quite happy in that respect… as for how its doing only time will tell.

My HGB was 10.1 (last time 10.3) WBC down a little from 3.9 to 3.6, Platelets up to 90 from 80 last time and 70 the time before, so that's looking okay but my Neuts are down to 1.2 from 1.6… the WBC and Neuts resulted in dropping the strength of the Bendamustine from 60 per sq inch (or something similar) to 40 per sq inch… in an attempt to stop the drops. They don't want to see me for the best part of 3 weeks which surprised me… I thought they would be keeping an eye on my bloods… but apparently not -hey ho.

As you point out, infections are the key danger and I will be watching my signs like a hawk,,, first sign of anything dodgy and I'll be ringing in – no brave soldier for me I'm afraid,

I read your post on your B Bombing thread and I'll answer you over there.

Take care.

Dai.

[DizzylizParticipant]

Hello Dai,

Glad to see your treatment is going well with no hospital for three weeks, so happy writing keep warm!
And bug free. Kevs in hospital this week with pneumonia but over the worse now and hopefully home in a couple of days,
It seems to be getting infection after infection but tbh I think it's the original one that's never really cleared,
So I'm hoping they've zapped it this time it's getting him down, so Dai hope you and Janet have a good couple of weeks.

Keep well , love liz&kev xx

[DaiCroParticipant]

Hi Liz & Kev,

From what you have said here and elsewhere it certainly looks as if the medics haven't managed to get on top of the original infection… with different shades of it reappearing and causing these repetitions which are both worrying and inconvenient to say the least.:-P

I have been suffering with C: difficult, a particularly nasty stomach bug which is both extremely unpleasant in its side-effects and completely draining… I put my Revlimid failure firmly at its door because the Rev was not being given the chance to properly absorb due to the actions of the bug. The thing is It developed in early May but was not diagnosed by the medics until late July… although several people, non medics all, asked if it was possibly C: Diff because they had either had it themselves or knew of someone close who had been suffering from it. It is now under control but I am more or less under permanent antibiotics to keep it that way.:-|

I hope that you can press for fourth investigation of Kev's repeating condition while he is well and not have to ask while they are treating him again… with the usual cocktail of meds, ignoring the past manifestations and only dealing with what is in front of them… perhaps your consultant is the one to approach because Kev's quality of life is being seriously undermined by this condition.:-(

All the best

Dai.

[DizzylizParticipant]

Hello Dai,

Sorry just seen your reply, kev is home so I've been busy settling in at home and he'd probably call it fussing!
I agree with what you are saying and after treating kev with what seemed every antibiotic they had I'm hoping they've
Finally beat it. We are in clinic tomorrow so we've got a long list of questions and to begin his third cycle of rev/dex.

I will post update tomorrow, take care love liz & kev xx

[TerryMGParticipant]

Hi Di,

I am joining your club and having Bendamustine C1 on Tuesday along with Thalidomide plus Steroids (Dex?). I belong to the South East London trust that when into administration. The 3 hospitals involved are to be split up and taken over by other trusts or organisations. The real issues were PFI payments on 2 of the 3 hospitals. I chose to follow my very good consultant Dr Bowcock . They originally turned down funding but she appealed so I am in your club as well. I try to use the facilities at Sidcup to keep this hospital going. So my new hospital is Princess Royal University Hospital near Biggen Hill. This will be linked with King?s College Hospital where I had my SCT. I am currently having Radio Therapy (RT) on my right Tree Trunk Leg at St Thomas?s. So Monday I have a blood transfusion to get my platelets up at Sidcup then off to St Thomas?s for a dose of RT. On Tuesday I have my first lot of Bendamustine then of for more RT. When I was first ill I was on CDT my Igg when from 70 to 3 in 3 months. However, I had spinal cord compression as could not walk so I got DVT. I now know what exercises I can do and I will do everything to prevent my getting DVT?s but I am going to have Klexane injections as well. Most 2012 I had a good year despite discovering I had prostrate cancer, some skin cancer and some other issues. I was back to 95% of normal life then Myeloma strikes back and back to square one. Velcade was magic for me but stopped working for me when I started it again when my leg got bigger (Myeloma in the calf muscle). Lenalidomide did not really work for me too well so that is another reason I will be on Bendamustine. My Igg is currently around 40. So as I keep on saying ?failure is not an option? as I am still trying to restore a rare MG although no real work for over a month now. I will follow your progress and let you know how I get on as well. Like you my veins are rubbish too!!!

Regards?.. Terry

[DaiCroParticipant]

Hi Terry,

Our paths and treatments have followed very closely, Velcade was also magic for me (not the process, old school cannula not the new subcut unfortunately) but the MM came back within weeks of finishing treatment despite reaching total remission. 🙁

I have one rest week left before starting C2… getting a little better and stronger day by day and fatigue and weariness are the only discernible side-effeccts. 🙂

I too take Clexane (150ml each day) having had 2 DVT's, one in each leg, in 2011 and 2012. The snow is keeping me housebound and I find that a few gentle walks around the house (bungalow) is all I can manage. I feel great sitting down but it doesn't take much exercise to knock me off my feet.:-)

Yes, let's keep in touch… unfortunately Keith who was one Cycle ahead has had to move on to another treatment (CDT) but Scott is a couple of Cycles ahead and weighs in now and again so watch out for his posts too. 😎

Good luck with your RT treatment… and with your other cancers, you have dertainly drawn the short straw with them my friend. 😐

Regards

Dai.

[VickiParticipant]

Dai

Just wanted to say hi and hope you are feeling good and the treatment working. Failure not an option. Colin has his 100 days bone marrow assessment next Thursday to see how well we are doing. Fingers crossed for us 🙂

Vicki and Colin x

[TinaParticipant]

Dai,

I have been thinking of you on the Bendamustine treatment and have my fingers crossed for you and all others on this journey.
It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her that it was a waste of time.

My very best wishes to you

Tina X

[DaiCroParticipant]

[quote]It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her that it was a waste of time. [/quote]

Hi Tina,

That was also my original impression based on information and opinion of a couple of years ago but Patrick did quite well on it if I recall correctly… about 12 months? 🙂

My consultant says that a decision will be made about the continuation of Bendamustine after 3 Cycles (if nothing untoward has happened before then) with the option to have up to 8 Cycles in all. After that, assuming remission or a plateau has been reached, it will be a matter of waiting on the relapse before trying something else (Pomalyst or back to CTD etc.). 😎

I am hoping to last on the currently available treatments until Kyprolis (Carfilzomib) gets licensed here (it was licensed in the USA last July. Kyprolis, along with Dex and possibly Revlimid sounds like a really good treatment… my consultant was quite bullish about it… but when it gets here who knows? 😐

Dai.

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