[KevinBrownlesParticipant]

During my recent 'holiday' at Poole, I finally remembered to ask my Consultant as to what his views were about the above two 'new drugs on the block'.

He told me that in the case of Bendamustine, he'd been able to use it on a number of patients, during a free trial. The results had not been as good as expected and fell short of what he had been anticipating. Lots of side effects too apparently.

He had no knowledge of Pomalidomide, as it simply isn't available down here.

Kevin

[meeuuParticipant]

That was very interesting Kevin. Thanks. My wife, Cecilia is currently on Valcade/Dex (two and a half cycles completed then had to stop until her white blood cells come back up from 7.6. Yesterday she got 2 units of blood and is feeling a lot stronger today, so we are hopeful that her next blood test on Fri week will permit her to re-start the treatment. Unfortunately she has a record of failing each treatment regime after 2-3 cycles (Thalidomide, Revlimid, Cyco etc), so we are a little concerned that we are running out of ideas. Hence the importance of your post re Pomilidomode.
Thanks again.
John

[brochoParticipant]

Hi John what a shame Cecilia is having problems with her blood counts, fingers crossed she will be able to have her next dose Often a short break does the trick .I had the same problem last year and I had GSCF injections in between doses which brought my bloods back up to a level where I could carry on with the treatment Its always good to hear of the new drugs in the pipeline , mind you Bendamustine doesnt sound so promising now which is a shame Good luck for next week and please pass on my best wishes to Cecilia ( lovely name ) Bridget

[TinaParticipant]

Hi Kevin,

I am really shocked that your consultant hasn't heard of Pomalidomide, although not widely available in the UK it has been going through testing in a big way in th US for some time.
You might have read Patrick used Bendamustine from Feb – August this year with little to no side effects and a very good result in reducing paraproteins, in fact he has has much better results on Bendamustine than with Revlimid.
Sorry I'm a little gob smacked with your consultants views,

Wishing you well,

Tina

[meeuuParticipant]

Hello Bridget'
Thanks for the reply. Could you please tell me what GSCF injections are?. Also, I'm uncertain what Bendamustine is (ie what is the "unmedically sounding" name for it?.
As I consider you as one of the pillars of this website, I value your advice and admire your fortitude.
Kindest regards,
John

[brochoParticipant]

Hi John the GCSF injections are growth hormones , the same ones used to encourage stem cell prodution before harvesting As for Bendamustine I am afraid I dont know another name for it , in fact I dont know a lot about it at all really. Tina has replied to your post , she and Patrick are much more knowledgeable than I am and I an sure she will be able to help. Thank you for your kind words ,mind you never been a pillar before though been called a plank many times!!Tee-hee love Bridget

[KevinBrownlesParticipant]

Hello John

GCSF (or Granulocyte colony-stimulating factor) injections are used by patients, including me, to boost white cell production in the blood when their production has been affected by Revlimid, which lowers the neutrophil count. In my case, my normal neutrophil count is around 3.0. When I resumed Revlimid, my count went down to to 0.2.

A level of 0.5 is considered to be neutropaenic and that's when you end up in hospital in isolation etc.

It's worth bearing in mind that there have been a number of previous forum posts on this subject concerning the back throbbing pain that these injections can cause. If you do have to go onto them, I would strongly suggest pain control with your Consultant.

Kevin

[GayeParticipant]

Hello Tina – as you know I was being considered for Bendamustine and Pomalidomide on clinical trials as Revlimid is now no longer working. Bendamustine has now been ruled out because of my low platelet count. I know that Patrick has been offered Pomalidomide under special circumstances. On clinical trial it won't be available until next Easter and my consultant asked me what area you live in so that she could get more details to help me access it. Could you possibly help?

I hope both you and Patrick are doing well.
Love, Gaye x

[TinaParticipant]

Hi Gaye,

Yes, Bendamustine definately would not be suitable with your low platelet count. Patrick is having a platelet transfusion nearly every week now and the consultants are leaving the Pomalidomide for as long as possibel as his paraprotein count is good.
We live in Buckinghamshire – hope this helps.

Love

Tina

[GayeParticipant]

Tina – Thank you so much for your reply and I will let my consultant know. I do hope that Patrick's paraproteins remain good for as long as possible. I will get back to you when I know more about the Pomalidomide.

My love to you both. Gaye xx

[KWilsonParticipant]

Really informative thread as I too am running out of options. Interesting to see how/when the other treatments will be available to us and also how other forum members fare when applying for them.

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