[compass007Participant]

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

[compass007Participant]

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

[compass007Participant]

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 heartlands that is way of the mark in there thoughts basically what they said is that with allogeniec Stem Cell Repalcement this is very possible although Very Very high risk, the way they put it to me is that I am 51 now if after allogeniec SCT you lived another 20 years or more would you say thats a cure, my answer was I would be thrilled to get another 2-3 years…there reply was well we have patients that are doing just that and beyond, so although still not sure there is a cure it has to be good news although high risk and to be qite honest about 60-70 % die in the first 3-5 years..

anyway thought that was quite interesting as it looks as though I will be going through Allogeniec SCT in the near future lifes one gamble but just wish the odds were a little more favourable lol…

hope your as well as can be

regards

 

[compass007Participant]

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, the doctor can apply to receive the drug without charge. Please note that ixazomib is given in combination with lenalidomide and dexamethasone, so the doctor is also responsible for securing funding for lenalidomide and dexamethasone.

To be eligible for the CUP patients also have to satisfy the criteria of the Tourmaline-MM1 clinical trial, which means that they will have relapsed myeloma (i.e. between one to three prior lines of treatment) and not refractory (i.e. no longer responding) to protesome inhibitors (e.g. Velcade) or lenalidomide. The doctor must also be satisfied that the patient would not qualify for an existing clinical trial or be eligible to receive an alternative treatment.

If you have any questions about the CUP please speak to your doctor in the first instance or email askthenurse@myeloma.org.uk

[compass007Participant]

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 for one week fortunatley I got ill during the week off the drug so have only missed one week, what I can say is that after SCT failure my Plasmacytoma behind my eye started to return and bearing in mind that when I was originally diagnosed some 12 months ago this tumour was very aggresive and they thought I would lose my sight in that eye…after a 1 month cycle of this drug combo the tuma had all but gone….so at the momment im very much pro Ixazomib and may (touch wood) get upto 21 months remission from it…However this illness is always a fire fight and what works for one person may not for another, so as usual I take it one day at a time and although im up beat I certainly dont get fazed by drugs failing ive already had SCT failure and DT-Pace failure and Velcade failure “that sounds like complete failure” ha ha… like I said im still quite up beat and take it one day at a time what will be will be…Good luck all

Regards

 

Les

[compass007Participant]

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 they put me on a US drug not EU aproved called somthing like Ixazomib (but see my treatment forum comment) this seems to be holding up at the momment like I said we are allways fire fighting but there is hope as new drugs are becoming available quite quickly but it really is trial and error, its difficult not to get upset when something doesnt work but you have to stay strong and keep your chin up some people can live with this for 20 years if you get the right treatment and are lucky enough to stay healthy and in the right frame of mind….some people are not so lucky im afraid but thats part of the illness and comes with the terortary good luck and most importantly try and stay positive I know thats difficult….

[compass007Participant]

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 detrimental effect start the new cycle tomorrow Ixazomib Lenalidomide and Dex….touch wood it still seems to be working, I do hope the US aproved Ixazomib becomes available to all because at the momment i think its the best relapse drug about….im sure time will give me that answer…all the best and keep your chins up…

[compass007Participant]

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 or consultancy first, I have only taken 1 Ixazomib as its weekly then lenalidomide daily and Dexys Midnight Runners Weekly, still have pain in my shoulders and right rib but to be honest im coping ok with pain Killers….what does confuse me a little is that my consultant who is Dr Wandroo (fantastic by the way) told me from the start there is no cure…then my consultant at Heartlands Dr Kishore told my with allogeniec STC it is a curable cancer? not for me by the way I think im too far but I would like to know which consutant is correct any thoughts?

 

Still a Happy Chappy at the mo….

All The Best

 

Compass007  Les

[compass007Participant]

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?

[compass007Participant]

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 heartlands on the 29th to go through that…it does look like they are going to do a second sct “tandem” as they call it… so its fingers crossed.

 

Kind Regards

 

Les

[compass007Participant]

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

[compass007Participant]

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 major problems, not sure whats next or when I will know if it has worked, but I am very grateful to all the staff at Heartlands Birmingham FIRST CLASS…. and a big thank-you to all on Myeloma UK who give me reassurance.

 

Thank-You

Les

[compass007Participant]

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

[compass007Participant]

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

[compass007Participant]

Thank-you Jan that is very reassuring

Regards

 

Les

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