[eveParticipant]

Hi Susannah
I do not know any thing about Bendamustine trials only MX1 trials,I can only go on information I have.This is were Gaya would be very helpful,she fought hard for frontline drugs.
It is postcode lottery,you would think having roughly 3000 patients diagnosed with mm per year they would be trying to sign them all up for trials,because it is in there interest to learn how successful the trials have been.
It all comes down to money,
I am grateful my husband is on trials,because it offered the second line of drugs VELCADE,as CDT has not had good response,this only showed up when second bone marrow taken,i do not think he would have had it taken if he had not been on trials.
My beef is why ,is Velcade only second line drugs,one reason only it is very expensive.Those men in grey suits have alot to answer for.

As Min says individual response to individual patients,treatment should be assessed individual,not in mass.how can they call trial result true if patients start with different levels of myeloma,eg:stage 1 -2-3.

I do not know were you live but it might be worth doing some reseach in to different places were you can get Bendamustine without clinical trials,but you would be taking on another fight you could well do without.
Politics rear there ugly head.
Would be interested how you get on Eve

[MinParticipant]

Hi Susanah,
Bendamustine is a drug that is 40years old and out of license so should be cheap. Bout $500 per complete series.
here is a little bit of background american unfortunatly but interesting nontheless by its content.
I think there is a reluctance to use it because it isnt 'cool' and 'novel'
Who cares what if it works and does the job and if its cheap the nhs should love it. But if its not cool it will fall out of favour.
like Dones liver pills and wintergreen ointment and all those wonderful medicines we had as a child.
In there day they were considered cool and novel but thats progress for youOh dear there I go again hankering after my mis spent youth.
Min
http://mutated-unmuated.blogspot.com/2008/04/bendamustine-hype-or-hope.html

[brochoParticipant]

Hi Susannah it really does seem unfair that Michael can only have Bendamustine as part of a trial . I have been tol it is one possibility for my next treatment , no trial , I am under UCH London. This postcode lottery for medication makes me so angry and the extra stress it brings we could all do without . I hope Michael is feeling a little better and his platelets are on the up love Bridget x

[tomParticipant]

Hi and Michael

Gosh what a lot you two have are going through 🙁
Hope Michael feels better now.

Love

Tom "Onwards and Upwards" xx

[Author]

Posts