[DaiCroParticipant]

Well I had my 'Black Monday' consultation… with a new and young consultant, just promoted from Registrar. She was very good I must say… informative, willing to discuss options and she listened well. 😎

My argument was for sticking with Revlimid… that my 7 month dalliance with C: Difficule had stopped or at the very least, hindered the absorption of the Revlimid and a clear month without C: Diff might show a halt to decrease of my light chains. If this happened then it would be reason enough to continue with Revlimid. 😐

The consultant said that my light chains had risen again last month from 420 to 535… while clear of C: Diff (or with the C: Diff under control due to the Vancomycin treatment). She acknowledged that a rise in my light chains of just over 300 in 5 months was hardly dramatic but her concern was with the effect on other parts of my bloods results… particularly my Platelets… which have gone down significantly over the last 4 months… from 150 – 140 – 125 – 100 – 90. She was/is concerned that if we persevere with Revlimid we may not see much change in the light chains but we may lose control of the Platelets… which may continue to drop and start causing problems. 🙁

My kidneys are fine, which is good but she really feels that the absorption argument notwithstanding, it is time to try something else… and that something else is Bendamustine. They want to see me in 2 weeks… they have applied for funding for Bendamustine and they should have a plan of action by then. If an answer comes in before the two weeks is up they will call me in. If everything goes according to plan I should start treatment before, or immediately after Christmas. 😐

So… I have lost my fight… for now. I haven't completely given up on Revlimid and I hope to revisit my arguments and my treatment in the future.

No treatment for a fortnight… not even Dex. 😀

I will start intravenous Bendamustine on days 1 & 8 of the Cycle, with Thalidomide tablets every night and Dex as per usual. 3 Cycles and then the review. I believe Scott and Keith are both on the treatment and I hope to get some pointers from them. God help the Nurse/Doctor who has to engage with getting a Cannula in twice a month but there you go… all the fun of the fair.:-|

Taking a few days to get my head around this move… but feeling reasonably good and no MM problems at the moment. 🙂

Regards

Dai.

[DizzylizParticipant]

Hello Dai,

Sorry to hear that revlimid didn't get to work on the MM or get the chance to see if it could've now that c-diff is under control!
Kevs only on the third week of rev/dex and so far seems ok, I do hope and am sure they will get funding for the bendamustine,
Hope the next couple of weeks pass quickly for ( just for the go ahead) you and Janet to have a good Christmas

Fingers crossed dai,

Love liz & kev xx

[tomParticipant]

Hi Dai

Am sorry you didn't get to stay on what you wanted 🙁 But I know you will make this one work for you, good luck on the drug free for a time.

Tom as you "Onwards and Upwards" x

[BADGERParticipant]

Well
Dia
here we go again I think Scott is doing ok on this regime and Keith has just started they said this might be an option for me next if velcade doesnt work not thinking about that yet:-P what you really need is a break from meds lets hope this comes soon there have been really good reports about it its not a new drug its been used for other cancers on the continent i think. Did they ever reconsider CDT again as it worked really well the first time for you 🙂
A big (((hug));-)
Love Jo x

[TinaParticipant]

Dai,

Good luck with the Bendamustine.

I mentioned to Keith about getting a PICC line fitted to avoid having to have cannulas,Patrick had one in his upper arm no problem.

Regards

Tina

[susannahParticipant]

Hi Dai

Sorry to to hear you have had to stop Revlimid. I hope the Bendamustine
works well for you

Good Luck
Love
Suex

[DaiCroParticipant]

Hi Liz, Tom & Jo,:-)

The fact that they have told me that they have applied for funding for Bendamustine makes me feel sure that it will be granted. After that it's a matter of waiting for dates for the start of treatment. 😐

I am a little bit wary of the daily Thalidomide because, apparently, that was the drug responsible for my Peripheral Neuropathy during my frontline CDT treatment… but my new consultant told me that they will keep an eye on my PN levels and will reduce it if necessary. 🙂

The disappointment in finishing Revlimid is wrapped up in future treatments… Kyprolis (Carfilzomib) is licensed in the USA and will come here within the year (ish) and it works with Revlimid… Kyprolis reducing the Light Chains while Revlimid does its job. Revlimid has a median of 30 months (I got 10 months and everyone else I know has had roughly the same). With Kyrolis that median is extended much further… so there was my hope. I don't know the median of Bendamustine… its such a new drug… but it may give me long enough to see the licensing of Kyprolis (and other new drugs from the USA)… so I will be staying as positive as possible and wait and see where Bendamustine takes me. 😎

I will wait to hear from Scott and Keith and see how they are getting on with it, plus any tips for handling any side-effects. 😎

'Whatever It Takes'…

Dai.

[DaiCroParticipant]

Thank you Sussanah and Tina,

I am going to phone Sarah, my specialist MM Nurse to ask about a PICC Line because getting a Cannula fitted is a major operation with me. I know you have mentioned this before Tina… I believe I asked about the procedure during my Velcade treatment but they said something about 'not doing them in Nottingham' or suchlike) but I will press a little harder this time. 🙂 😎

Thanks for your support. it is much appreciated.:-D

Dai.

[VickiParticipant]

Hi Dai,

Good luck with this new set of treatments :-), come on beat it into touch like the c diff……you do tell a good story and Although it's not funny you make beating c diff entertaining 😉

I know nothing about this bendamustine, but all I know is that you've got to hang about for manège sake, and the rest of us because for me I get kept up to date on drugs progress from america and what that all means! Hey shame about the revlimid but I've no doubt something good will come up soon to beat it.

Know what you mean about the cannula as coli. Had real problems when they wanted to put one in when he was in hospital. Though he had blood taken twice now since SCT and they've got a vein twice, first time"

Good luck Dai and keep us posted x

Vicki and Colin x

[tomParticipant]

Hi Dai

I hope they get back to you soon to let you know its been passed and can start it of soon (am the sooner the better type of guy)
As for the Thalidomide I was on Four Tabs a day (8pm) with my CTD. still got dodgy toes though Lol but if thats all I get then am Happy (ish)

Good Luck Dai

Tom "Onwards and Upwards"

[KeithH17Participant]

Hello Dai, so you too are going on the Bendamustine route very soon,well I wish you luck on your new journey.
I started my treatment with a 1 hour infusion on both 16th&17th Nov. I felt tired and my appetite dropped off somewhat but after the first few days returned to normal. On the whole I'm tolerating it well but my blood counts are still quite low. I phoned the Myeloma nurse at MUK and she told me that because of all the different drugs I have had my Bone Marrow was badly suppressed and therefore was slow to recover which made perfect sense to me. At the moment I am enquiring about the Vemurafenib trial which will be performed at the royal Marsden,details on the MUK website. It's very doubtful if I will qualify and anyway if I did wonder how it would impinge on my current treatment but that's something I will need to discuss with my Consultant. I've had another blood test today but I have not been contacted with the results but I am back there next Thursday before going back on the Monday afterwards to start the second cycle of Bendamustine. What you need to be careful of with this drug is it's effect on the kidneys (I take Allopurinol) so the old adage of taking on water is more important than ever,but the hospital will no doubt explain things to you. What does surprise me is when you say they are applying for funding?
This drug can't be all that expensive as it's been around since the 1970's.

Also I read that the median is around the same as Revlimid but having got only 7mths from Rev myself I'm not taking much notice of that.

Anyway best of luck with it all Dai and if you want to ask me anything you know how.

Keith.

[scott9Participant]

Hi Dai

I had my fourth infusion of Bendamustine on Monday. My bloods were OK so the prof has booked me in on 7 Jan for the next session. My light chain reading is at 330 so not as high as yours as yet. I'm hoping that with enough Bendamustine the light chain reading will go into reverse soon. I'm not having any problems so far with this. I also take two thalidomide pills every day. This hasn't affected my peripheral neuropathy. I got PN when I was on Velcade and it hasn't gotten any worse (or better) since then. I have to take ten dex pills once a week and don't get much sleep that night. Thank goodness its only once a week for that.
I get a cannula in my vein each time I have Bendamustine and as its only once every four weeks my veins are coping OK so far.
Good luck with your treatment and hopefully you will be OK with it.

Scott

[mhnevillParticipant]

Hi Dai

Just caught up with your news. Sory about the Revlimid, but maybe the Bendamustine will be even better for you. You say that you have only had eight months from Rev, but in fact you are still going strong – well strong in the fight anyway.

Hope the Thalidomide doesn't cause problems this time.

Rooting for you as always. I'm certain you will be round for a long while yet.

Best wishes.

Mavis x

[adamsp41Participant]

Hello Dai… just caught up on this post…don't know too much about the Bendamustine regime …all I can say is I hope it works well for you …I am sure the consultants have your best interests at heart…I too am on the Revlimid path ( X1 trial ) and so far so good…stay positive and once again " kick it between the legs"…Phil Jan and Sam

[BADGERParticipant]

Hi Scott

glad you are doing ok on the Bendamustine as we are both in trouble with our kidneys i wonderd how yours are reacting to this treatment because it might be for me down the line
keep well
Love Jo xxx

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