[KeithH17Participant]

Hi Guys

Had meeting with Consultant today and the outcome was not what I wanted to hear although not unexpected.
My PP's at 22/10/12 were at 2.13gl and have risen to just under 30.0gl as of 12/11/12 and BMB showed MM cell activity of around 28% therefore showing that the Revlimid has ran it's course and is no longer working.
There was a meeting of minds at the hospital and the outcome is that I am to start Bendamustine on 19/11/12 to be infused over a 30-60 minute period along with Dex/Pred steroid infusion given over a 2 day period 28 day cycle
and a minimum of 6 cycles. The side effects are too many to mention but it's the usual suspects so I think we all know them by now. It is a Chemotherapy drug which is a derivative of mustard gas and has been around for some time and used in East Germany in the 1970's as a first line treatment.

Dai…I asked about trials and in particular Pomalidamide which was being trialled in Newcastle 40 miles north of me
but was told the criteria was very strict and that he had tried to get patients onto it without success and that the trial had now closed. He said that I was running out of options and that Bendamustine was my best chance. He also mentioned the possibility of using Melphalan or Cyclophosphamide at some point after Bendamustine but when you read the comparisons between the way these agents work it would seem to me that Bendamustine is a stronger option. He again stressed that I have very few options and that this treatment needs to be administered asap in order to halt the MM in it's tracks. Although as of now this is the best I've been for months if nothing was done the consequences would be dire because of the rate of increase in MM activity in the bone marrow. Even though I realise that my options are becoming few and far between to actually hear a Doctor tell you to your face really brings the reality home in no uncertain terms. I will be reading up on this drug over the weekend before I go to the hospital on Monday to sign the consent form before starting the treatment. So it's the same journey only on a slightly different road and with Rev now left behind I only hope it will be a less rocky one but time will tell.
As for future trials I've certainly not given up on that one and will be keeping a keen eye on future developments.

Good health and happiness to all.

Keith.

[HelenParticipant]

Hi Keith
I really hope this works for you, ironic that you look and feel so well now. So keep us posted and I hope the side effects are small and manageable
Love Helen

[BADGERParticipant]

Hi Keith

I hope this works for you when i was at the MM info day in London they were talking about third and fourth sct i wonder if you could get a referal to to Kings or Uch it was the consultants from there that suggested it they also prescribe drugs from the Rare cancer fund if needed
which included pomalidamide
Regards Jo

[DaiCroParticipant]

Hi Keith,

I understand the difficulties about getting on a Pomalidomide trial…. but how come the Bendamustine? It's not licensed… so there must be a trial of sorts.:-0

I have read extensively about both Pomalidomide and Bendamustine and both seem good with a median of 12/18 months and rising (as all new drugs seem to do…Revlimid had a median of 12 months but is now 30 months… (although nearly everyone on here has failed to reach… the 12 month mark so someone is fortunate).:-|

The good thing about Bendamustine is the Cycle which includes 2 infusions in 2 days I believe… and that's it until the next month… is Dex part of the package? I can't remember.:-/

Good luck with it and keep in touch about the treatment… I get the feeling that they are about to pull the plug on me any time soon… I might get one more but the new year may well be different… especially if Bendamustine is available (it was mentioned back in May) but as I have said earlier in the thread, my consultant was quite bullish about there being no treatments or trials available at the moment… 😛

Regards:-)

Dai.

[KeithH17Participant]

Hi Dai

Yes it's 2 days at the hospital with a 30-60 min infusion on each of the days through a cannula and yes steroids are included prednisolone so I've been told. It's a 28 day cycle but the drug along with the steroid is given in a concentrated form therefore only 2 visits to the day unit per month although my blood counts will be strictly monitored and this will be fully explained when I go to the ward on Monday. My blood sugars will be adversely effected no doubt so it will be back to the insulin regime allover again. The consultant said that as long as it stays in the teens he will be happy enough but it's the Hb and Platelet counts that really concern me along with the usual problems concerning bowel movements so I'll need to get on top of that as quickly as possible. The fact is Dai I've been told this is my best if not my only option so I've no choice but to go with it. The biopsy clearly proved that the Rev had stopped working after it showed a MM activity rating of 28% and this combined with PP's of 29gl made the decision a no-brainer. Obviously it wasn't the result I wanted but I just have to take it on the chin and move on.
I hope you can hold on to the Revlimid as I wanted to but what's the point if there is no benefit to us the patients?
I have read the Horizons Infosheet which does say that Bendamustine is not licensed but this is dated 2010 so could this have now changed as there was no mention of this being a trial?

Take care Dai and I will keep you informed.

Keith.

[eveParticipant]

HI Keith

Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer uk,they have a section were you can put your condition in and ask for any trials with Bendamustine in,also went on Myeloma Beacon.The general impression I got,is the drug companies are providing drugs a lot cheaper for new and first time remission patients cheap on the bases they will be taken up as basic treatments eg Velcade. People in your position are going to have to fight and go to other funding to get extra treatment to buy you time.:-(

My own thoughts on this is they should be throwing drugs at you,you know your position,are prepared to test new drugs,and they seemed to be reluctant to use this untapped market,Bridget was a good example.

I know the thought of do no harm,but it must be very frustrating when most thing have been tried and tested to no avail.

You are ready to fight the next stage and as you say you feel well in your self,so lets hope this new treatment buys you this extra time.:-)

Good luck Keith I hope all goes well and you keep this feeling of well being and determination .Love Eve

[KeithH17Participant]

Thank you Eve for your kind words. You are right of course with regards to the availability of trials. I would try anything just to get a bit more time and who knows that elusive cure could be just around the corner. I've never been one for taking no for an answer and I'll be looking for new and different options all the time while there is still life in my body. I was hoping for a lot more time from Rev but it wasn't to be so now Bendamustine is my best chance to get me to the next hurdle. I'm feeling pretty much ok at the moment so I'm more than ready for the fight.
Dai is in a very similar position to me with regard to further options and I know he won't take it lying down either.
I'm sure we will both win through this eventually and come out on top.

Take care both of you.

Keith.

[susannahParticipant]

Hi Keith Im sorry to hear of your news, just wanted to let you know michael was on Bendamustine trial this time last year,his PPs did go down but unfortunately he had to come off the trial because of his platelets and he could not have a transfusion because of a condition of the trial. pomalidomide was never an option. He has just stopped the MUK three trial which is very new (only 3 people on it) his consultant told us they are recruting every few weeks, so this will be another option if the bendamustine fails, which of course im sure it wont.

Thinking of you
Sue x

[TinaParticipant]

Hi Keith,

Back in 2010 Patrick had Bendamustine treatment for almost a year with very little side effects. He was, in fact quite "well" during this time. Similar to Sue's comment Patrick did have issues with platelets being very low however this was an ongoing issue before he began the treatment. Bendamustine is unlicensed but not apparently expensive, Patrick was allowed this treatment as there was nothing left to try at that time. He did eventually have Pomalidomide but contracted an infection that eventually brought him down. Keith I do not remeber Rev or any other meds being taken at the same time as Bendamustine. The only hassle is that the infusion has a short shelf life so that it cannot be made up until you arrive for treatment – can be hanging arouns but no change there:)
The very best of luck to you

TinaX

[KeithH17Participant]

Hi Sue

My own Platelets have been very low since being on Revlimid 19 at the last count but the docs could not decide whether it was the Rev or the MM that was causing it. After having the BMB it was decided that the Rev had stopped working so I was taken off it. I had blood transfusions but never platelets. TBH I don't think the Doc's are being totally upfront with me with regards to the complexities of these treatments. I still think I should have had a platelet transfusion but when I asked I was refused and when you mention "the condition of the trial"I do start to wonder? The fact is the word trial has not been mentioned in connection with Revlimid or Bendamustine so I would expect a transfusion of platelets and or blood if this was needed. The bottom line is I'm not accepting this rubbish and I will be putting lots of pressure on the Docs to be more upfront.

Tina,

When Patrick was taking Bendamustine was it with Steroids and if so what steroid was it?
At the moment I'm taking nothing until the new treatment starts on Monday.
I just wonder that when I totally run out of options will spending the rest of my days in a bubble be any good?
The problem is I have always wanted to go out with a bang and never a whimper so the bubble hardly fits the bill.

Take care all of you and best of health.

Keith.

[TinaParticipant]

Keith,
I do not remember Patrick taking anything at all along with the Bendamustine treatment.He did have to have regular platelet infusions and never recovered from neutrapenia which began with the short-lived Revlimid treatment.
I agree with you about the bubble. I regret that Patrick continued to take super amounts of antibiotics when he contracted what was to be his final infection. He would have enjoyed the last weeks of his life so much more albeit a little shorter.
Tina

[KesParticipant]

Good luck with your up coming treatment love

Regards
Karen

[DaiCroParticipant]

Hi Tina,

If I recall correctly Patrick had nearly a year on Bendamustin, is that right? 😐

I assume that his Nuetrofils never really came up that much during his Bendamustine treatment and he finally succumbed to infection due to being Neutrophenic and therefore unable to fight for himself and relied totally on the antibiotics.:-|

As you said, it is a pity that he didn't recover enough to make it to the Pomalidomide… perhaps Keith and I will be more fortunate… and there are several new treatments either already developed and licensed in America, just waiting to be licensed in Europe that might be suitable.:-D

Hope is the key… it keeps me going for sure.8-)

Much love 🙂

Dai.

[TinaParticipant]

Dai,

Yes, almost a year on Bendamustine and hardly any side effects. He did actually have one course of Pomalidomide, which I hasten to say was readily available to him at that time. Unfortunately the infection became more of a threat that MM so there was no point in continuing with it.
Patrick was neutropenic for almost 18 months.He was left with scarred lungs after a number of infections which turned into blood clots forcing numerous transfusions per week.
Patrick never gave up hoping even two weeks before his death he was refusing to accept the inevitable.
The Americans certainly are ahead of us Brits in MM treatment and you are right there are several treatments in the pipeline – bring it on!

Tina X

[DaiCroParticipant]

Thank you Tina,

I believe that I will have the same attitude as Patrick when it comes to letting go… even as I slip away I am sure I will wake again and drag it out. I am a bit of an existentialist… 'I think therefore I am'… while I can think and speak and make sense I believe that I can carry on.:-D

I remember my father, dying of lung cancer… my youngest brother (but much bigger and stronger than I) used to carry him like a small child from the lounge to the bedroom… and my father saying 'this is stupid'… because his mind was sharp and lucid and while he was lying quiet in the chair or bed he could convince himself that he was about 80% normal… until he tried anything physical and needed his oxygen. He was like that until the night before he died… frustrated that his body could not match his mind. 🙁

Yes,there is hope in the shape of the new novel agents coming from the USA… and all those coming behind can take great hope for longer remissions or extensions of treatments… those like scott, Keith and myself just have to try and hang on for the time it takes to get the first one, Kyprolis (trialled as Carfilzomib… now licensed in the USA) on board in Europe (Spring, early Summer next year).8-)

As usual it will be in the hands of the funding body NICE to make it available to those in need. I just missed the trial by a matter of days in March…when I fulfilled all the criteria except for Myeloma in my urine, which showed a week later… 3 days after they closed the trial acceptance… but my consultant was very bullish about the drug, believing it the perfect companion to Rev & Dex… having the properties to knock the MM right back and allowing the Revlimid its full power… with the distinct possibility of extending the treatment's life by a good couple of years.:-|

Let's hope and wait and see.

In the meantime I will be hanging on grimly… but with a smile on my face.:-)

Much love

Dai.

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