Ask about IXAZOMIB relativley new drug recently aproved in UK…however not sure about the drug with the kidney condition, but certainly wort asking about.

Good Luck

Les

Hi I really think Mcmillan is your very best starting point…..this sounds daunting to most, but they really are fantastic and give great support…

Kind Regards

Les

Hi Peter only coming back to you now as I wanted to speak with my consultant Dr Kishore and team at Heartlands regarding MM being Curable or not…upto 6 weeks ago it was my assumption that MM was not curable after looking at all the information available I would say that is a pretty fair assumption…However after talking to the team at…[Read more]

A clip from the Myeloma UK site….

Pharmaceutical company Takeda are also going to appeal the CHMP decision. During this period, Takeda will continue to make ixazomib available to eligible UK patients through a compassionate use programme (CUP).

This means that if a myeloma patient requires treatment with ixazomib, recommended by their doctor,…[Read more]

Hi Helen and Suzie just to let you know my consultant told me that as Ixazomib is non EU aproved and that the drug Company is trying to get it aproved so it is cheap (which would make sense) Im not sure how good it is yet as I have had just the one cycle, as I said in my last comment I caught a cold then got a fever and had to stop the treatment…[Read more]

I have been diagnosed about 12 months now and unfortunatley we are always fire fighting I started on velcade but it didnt work for me ….I thent went on and had CHOP chemo and the finally DT-PACE chemo that got me into remission..I then went on and had Stem Cell Transplant at Heartlands the remission lasted about 3 months which is pretty crap so…[Read more]

Just a quick update caught a cold a couple of weeks ago needless to say that turned into a fever and eventually i was hopitalized for 5 days found out it was my Hickman line that was contaminated so they took it out all fine now and im back at home, however I had to stop the new drug treatment Ixazomib for a week doesnt seem to have had any…[Read more]

Well after only 6 days my plasmacytoma in the right eye is all but gone I know that is not really a medical measurement for success or failure but I would have to say it must be a fairly good sign not seeing my consultant for over a week so wont really know anything till then, Im going to see a radiotherapist tomorrow not sure if its for treatment…[Read more]

I should of said a drug thats not  approved by the EU, but with whats happening with the UK and EU should I really care?

Hi Jan your description is very much like the pain I am getting, infact I went to clinic yesterday and after an MRI scan last week it is showing damage to the vertebrae, im taking co-codemal and a morphine sulphate capsule at night it certainly takes the edge of the pain, again im not sure how much effect the SCT has had yet and I am back at…[Read more]

Hi Rebecca, thanks for the reply that does sound very much like what I am going through, and like I said I am generally an up beat person anyway, and like they all say “one day at a time” thanks again for your reply…very re-assuring.

Regards

Les

Well SCT done and out in only 14 days…I feel very lucky, I had no real problems a few mouth ulcers and feeling very sick, However the boredom as i thought was my biggest problem, when you are told isolation thats exactly what they mean, even my food was served through a hatch, but like I said I feel very lucky that I got through it without any…[Read more]

Hi Sonia, and yes I have the same feeling, However we sometimes forget about the partners of the sufferes who are also suffering (sometimes more).

Hope all goes well.

Kind Regards

Les

Thanks David the recovery and problems going through treatment does seem to vary a lot, as I had DT-PACE chemo which is very powerful I am hoping that this eases the problems with the Melphalan, but I know each individual is different.  Thanks for your advice….this really does help.

Kind Regards

Les

Thank-you Jan that is very reassuring

Regards

Les