[debonthewebParticipant]

A year ago today, just a few days before my 50th birthday,I was diagnosed with full blown myeloma and started on the PADIMAC trial. The velcade did a great job even after just two cycles, although unfortunately, I had very painful neuropathy and it too me a long time to get myself off the Fentanyl patches I was given for the pain. I have had few months in remission but unfortunately the blood test on Christmas eve showed a rise in my paraproteins and they are now back to 17. It looks like I may be offered to access another trial which might mean I get to have Carfilzomib. This would mean I would have a reduced risk of the painful side effects I experienced before.
If Carfilzomib is the best drug for me its seems such a gamble that I may or may not be lucky enough to get picked by a computer to receive it. I understand its not licensed in Europe as yet. Could I not buy it in from America or get it privately somehow? I don’t have much money but I would find it somewhere if it would make my life last longer or decrease the risk of more pain. I hate this horrible cancer, it has stolen so much from me already, but I try hard to remain positive about a cure being found very soon.
Thank you
Deborah

[sanParticipant]

Hello Deborah, sorry to hear that your pp’s have risen, there are many treatment regimes and i am sure that your treatment team will do their best for you, its hard not to worry about future treatment but hopefully when the decisions are made with you it will work out well for you and get you back into remission soon,and yes lets hope for a cure soon, my Mum initially had RCD on clinical trial which worked quickly for her earlier this year, San xx

[eveParticipant]

Hi Deb

Have they released any information concerning the padimac trials,because the few people who I know who were on it,it did not work for them!!!!

There is no harm in trying for the new trials if you do not get carfilzomib ,you can pull out of trials,you can also find the price of drugs by going into NHS pricing for drugs.!!

I do think you should be looking at and learning more about your Myeloma,many consultants do not tell you unless you ask,and even then tell you sparingly,they know more about Myeloma and which type have a better life expectancy than others,what they do not know is how much effect the new drugs will have on future life expectancy,so it is trial and error,and padimac was not right for you.

Consultants are also limited to what drugs they can give you the treatments if you are not on trials are as followed CDT CDV and CDR,they have to treat you with these before any new drugs,the trials offer you a chance of the new treatment coming on line as long as you fit the criteria,many people do not get this chance,as they cannot meet the criteria,so in that respect Deb you are in with a good chance,plus you have not had a SCT yet,so you have everything going for you,if this was Slim he would grab it with both hands!!!

I hope this helps,the first time you come out of remission is the worst!!!you have every right to feel this cancer robs you of your future!!but you will appreciate what ever lies ahead much more than you have ever done before,you just have to make the most of all the lovely things around you.

[CarolsymonsParticipant]

Hi Deborah

My numbers started rising after only 3 weeks off the initial treatment which was CTD. I wanted to go on the PADIMAC trial to access Velcade but unfortunately my consultant dissuaded me. I still beleve velcade would have been better than CTD for knocking my lambda light chains down.

On the 15th of jis month I am having pre tests before transplant, but if the blood test shows my numbers are up again I will be delaying the transplant. I think I will be chasing your carfilzomib trial. Even if I end up with Velcade it is a drug I haven’t tried so either one would be OK. That is provided the Velcade doesn’t leave me with neuropathy.

Carol

[Author]

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