[DaiCroParticipant]

I had my consult prior to starting Cycle 5 of Bendamustine this last Monday. I had a terrible 2 week 'rest' period before the consult and I suspected that my Neutrofils would not be up to a full strength infusion and I told Janet that we should expect a further week's 'rest' to allow my Neuts to catch up. This had occurred at the start of Cycle 4 and I felt more or less the same… actually I felt worse than last time, so I was reconciled to another week off and my body agreed that I needed it. 🙁

My HGB was 10.0… good for me and my Platelets were 80, a drop from 105… but my Neuts were 0.53… dire. We saw our regular consultant (not the consultant who had been overseeing my Bendamustine treatment) which pleased us both. She was excellent… at a time when I needed a filip from my medics; going back through my Bendamustine records and into my Revlimid and Velcade records as well. :-/

It was obvious that any good that Bendamustine was affording was being diluted by the knocks that my bloods were having to take each Cycle… with an 'extra' week before or between treatments becoming the norm… especially without any help by the way of GCSF, as I have recorded here before. It seems that the MUK 5 Kyprolis trial is only open to first time relapsed patients, so the rest of us are out in the cold in that direction. After much debate it was decided to stop all treatment for a fortnight – no Bendamustine, no Thalidomide and no Dex. Just my normal daily meds and Aciclovir as a preventative. Ah, yes… and GCSF injections 3 times a week to encourage my Neuts to recover… Hallelujah!!! At last! 😎

I will be back for a consult a week next Monday and we will take it from there. I felt washed out on Monday (3 days ago) but today I feel good… for me, really good. I will take my normal meds, the GCSF injections and the Aciclovir for 10 more days and see what the medics come up with. My consultant said she will talk to the other consultants to try and formulate a plan of treatment. It may be that if my Neuts are up above 1.5 that I will continue with Bendamustine… with the MUK 5 being out of the picture it would seem that Bendamustine is the only option but according to my consultant it seems to have plateaued… so I will leave it to them to come up with a plan.

I have had 2 GCSF injections so far with 4 more to come but I really do feel much better physically (and mentally) so all I need now is a positive plan. I will have my Zometa in any case and I will be hoping that my consultant's conversations with her colleagues prove fruitful.

So 4 months of hit and miss with my Bendamustine infusions, with my bloods being hammered into the ground each time with no help from GCSF had left me feeling bereft of support and hope… but now, with GCSF and a treatment free break, I feel that I am getting somewhere… an unmarked road no doubt, with no kind of SatNav to help with directions… but I am genuinely feeling better within a couple of days and looking forward to the next 10 days or so… and that, for now, will do for me. 😎 😀

Good health to you all.:-)

[eveParticipant]

Hi Dai

Well I must have read it wrong as well,Revidimide and Velcade had to be used before eligibility for Muks 5 .Which if only patients who were on CDR then Velcade then relapsing would be eligible,I would think they will be hard pushed to find patients!!!!

I would seriously question eligibility !!! Good luck Dai. Love Eve

[HelenParticipant]

Hi Dai
Hope the gcsf continues to lift your neuts and mood. Good luck next week
Love Helen

[mhnevillParticipant]

Hi Dai

Enjoy the break from treatment. Glad you are feeling a bit more like it.

Do hope your Consultant comes up with a good plan. At least she seems"on side" and you certainly keep challenging them which is good. I keep reading on the American Site of all these Trials for refractory patients. It's a shame we don't seem to have so many here. I wonder how much of it is down to money?

All best wishes and lots of strength for the battle – mental, physical and psychological. We MMers need them all!

Love.

Mavis.

[BADGERParticipant]

Dia

I am keeping everything crossed for you I am really glad you are positive and the news about the treatment is sounding better thinking of you
Love Jo x

[scott9Participant]

Hi Dai

I managed 8 sessions of Bendamustine before it hit my Neutrophils etc and that was that. As I posted the other day, my next step is to go for the tried and tested SCT. I'm due to have a chemo infusion tomorrow as step one towards the harvest. Good luck to you with whatever plan your consultants put together. There seems to be fairly limited options available to us. Lets hope for a few more asap.

Cheers

Scott

[TinaParticipant]

Hi Dai,

Unfortunately low platelet and neuts are the biggest drawback of Bendamustine treatment. Hope you get your neuts up and you can continue with treatment soon.

Best Wishes
Tina X

[VickiParticipant]

Hi Dai

Well a bit of a rocky road…..but the gcsfs at last are a welcome boost and let's hope rockets those neutrophils. Your new consultant sounds very proactive, so lets hope she can come up with a cast iron plan. I can't understand why they don't just let you have another go at revlimid. You were hampered last time due to the c diff so I think you haven't had a fair crack of the whip….

Glad you are feeling good too 🙂

Colin seems to have turned that corner…..fingers crossed. 🙂 he has lots more energy and not sleeping anywhere near as much. We've been out 3 times this bank holiday weekend and he is still full of beans. I feel so happy and at the same time emotional…normal things for most people but great leaps for us 🙂 enjoy the sunshine Janet and Dai x

Vicki and Colin x

[tomParticipant]

Vickie and Colin

Am well chuffed to read that Colin has turned that corner 😀 I remember that turn for me real well, its a great feeling at the time and still is, still not as fit as I used to be but at the moment its good Enough for me.

Get out and enjoy the Sun crack open that Wine (later though lol)

Love Tom Onwards and upwards xx

[VickiParticipant]

Hey Tom,

Thanks, glad you are still feeling good. You are a great support to all of us. Colin been good again today….did gardening! :-). Me running about after him fussing…..no change there! We did enjoy the sun and we did have some wine :-), after the yard arm.

Hope you and young bride Elaine had great weekend too 🙂

Vicki and Colin xxx

[tomParticipant]

Hi Vicki and Colin

Am pleased the Vino is going down ok, and yes the Young Bride and I had a great time, our youngest grandchild Sophie was one year old.
And don't forget we all help each other am pleased to say.

Love Tom Onwards and Upwards xxx

[eveParticipant]

Hi Dai

How are things going!!! 10 days is a long time when you are waiting to see what results you will get from GCSF,do you feel good in yourself !!! Are you able to enjoy some free time away from medication!!

Spring is late this year,but it is lovely to see the blossom and flowers in bloom,so looking forward to the heavy smell of the bluebells,I feel they have been missing from our lives for the last two years so hoping to get a chance to walk through the woods this year.
It must have been hard hearing about Keith although it was expected . I hope you have turned the corner and have a renewed energy to carry on fighting. Love Eve

[DaiCroParticipant]

Hi Eve,

First things first, yes I was deeply saddened by the news of Keith's passing. One moment you are exchanging views and information about treatments, plus a few wants and needs about life away from MM and the next the news comes in that they have suspended treatment while Keith was in hospital. :-/

It was no surprise from then on in… I could only hope that they got him fit enough to go home and take it from there… but it was not to be. Taking all we do know into consideration their was no shock attached to his passing, just sadness and weariness. Scotty is going for his 2nd SCT and I wish him well… I know that his kidney problems leave him feeling very vulnerable but I am sure the medics will control that factor otherwise they would not have allowed the process to start. 🙂

That leaves me up front and personal with MM… leading the way forward, seeking out treatments that might put off the inevitable for many months rather than weeks. I will not let MM define me… I am feeling quite good physically… as good as I have felt in a long time but saying that I have felt like shit for almost a year thanks to C: Diff… but that seems to be under control with medication… at last! 😎

I go back next Monday to see what my bloods say about what happens next. I assume more Bendamustine but we will have to see. Kyprolis and Pomalyst could possibly see me through to my 60th Birthday on Xmas Eve and beyond… perhaps well into 2014 but NICE are in control of that… NICE and the rules laid down by the drugs companies (ONYX in particular) – their policies and decisions will decide when I die, not MM. Decisions could be made tomorrow that could extend my life up to 2 years… but it looks highly unlikely that they will… although I will start a personal campaign to name and shame everyone with connections to the medicines that could extend my life… including our PM who stated last year that drugs on trial could/would be made available to patients who might die otherwise… he has gone very quiet on that topic.;-)

I am feeling very good at the moment so I am hoping that the GCSF are doing me good. My Neuts were 0.53 a week last Monday and so my incarceration and avoidance of loved ones has been enforced – although saying that most of them have been suffering from a plethora of coughs, colds and associated viruses and lurgies. My son, daughter-in-law and my 2 Grandsons, Owen 2 and Ethan 2 months, were up for 6 days last week but all of them and my daughter, daughter-in-law and Grandson Matty (15), were all suffering with colds and viruses… so they imposed their own ban. My daughter Amy and her partner (life and music) Ludo, came home from a winter contract in Cape Verdi 2 weeks ago. They were home for 3 days then had to conclude business and transfer funds from Majorca (they had to be there in person to satisfy Spanish law) so they made a week's holiday out of it and they deserved it – they did a summer season in Barcelona, four days off (for the wedding) and then off to Africa for 6 months, which included flying between islands every week with one day off per week… hard work. 😛

Amy has come home for the summer season… acting as her own agent for the first time in 5 years, so as to be near to me. Amy and Ludo, under the name of 'Mellow Yellow' will gig in England until the end of October and then take it from there… I hope I don't oblige them.:-D But it will be wonderful to see so much of them this summer (allowing for colds and low Neuts etc.).

Our Plum tree went from almost bare to blossom and then a full tree full of green leaves and fruit blossom – all in 7 days, wonderful. Our garden is ready for Janet's attention and I have sharpened my secateurs in readiness. I am looking forward to light lunches and afternoon tea in the garden and I truly feel fit enough for a few light gardening duties (which includes sitting at the garden table keeping out of Janet's way while she does the heavy stuff. 😎

I bet you are sorry you asked now.

Thanks Eve. 🙂

Dai.

[eveParticipant]

Hi Dai

Well you are wrong about one thing,I am not sorry I asked!!! I hope you have a really good summer,I know how much I miss about our life before MM took its toll and living on memories is not the real thing,2. 1/2 years for us,with six months remission when Slim was not great is not enough. You are a lot longer and like us whole routine changed you because of moving. Us because we travelled so much.!!!

You do seem to have energised yourself and with the warm weather coming I hope you and Janet have a good summer, do not envy Janet the gardening,my back could not take it these days.

I met Babs from this site the other day,it was nice to meet someone in person,but it did bring home to me the further you go on this roller coaster the passengers are not at the same level ,so imput becomes less for your personal situation !!!.
I am finding this site helpful to gain information.

Do you know how Scotty is, Marie from SE has not posted since husband had second SCT!!!!

The sun is out and the beach is calling me,the dog just comes along for the hell of it,it's awfull being able to see France so clearly and knowing are chances of any prolonged stay there is out. I am off to enjoy the sunshine. Love Eve

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