[terryl1Participant]

Hi All, Unfortunately, I have progressed to active myeloma in a rather scary fashion. I have been monitored as a smolderer at two cancer centers in the US. I live in New Jersey. Three weeks ago I went to the emergency room with horrible pain in my chest and back right flank—-two pulmonary embolisms. They say I am lucky to be alive. I am on anti-coagulant therapy. My hemoglobin also tanked to about 9.5. I have been invited to be a participant in a cutting-edge clinical trial with carfilzomib, revlimid and low dose dex. offered at our National Institutes of Health near Washington, DC. It is for newly diagnosed patients with no prior therapy. It will be 8 cylces followed by 12 cycles of revlimid only. I am lucky as my doctor, Carl Ola Landgren, is a highly noted myeloma expert/researcher who believes this combination may be a game changer in terms of giving long periods of remission without the necessity of a stem cell transplant. The trial is going to closely watched as the US FDA is considering carfilzomib's application for use now. If anyone has been in a carfilzomib trial in the UK, I would appreciate any feedback. I have only heard from a couple people in the US as the protocol is so new here for newly diagnosed. Thanks to all of you. Cheers. Terry

[DaiCroParticipant]

Hi Terry,

Two things. 🙂

One in common with you re: the pulmonary embolism… I had one quite early in my journey, only four weeks or so after receiving high dose radiotherapy for a tumour on my spine (directly related or so I am told) of which I too was lucky to survive and received enoxaparin for 6 months, followed by Warfarin for 12 months followed by my Stem Cell Transplant (SCT) after which I was cleared of all treatment… until I developed a Deep Vein Thrombosis (DVT) last summer and was put back on enoxaparin.

The other was a near miss. That is I was put forward and accepted onto Onyx's 'Aspire' Carfilzomib trial in January this year, for 2 previously failed major treatments, in my case CDT, SCT & Velcade… but although I was accepted my urine needed to show 5% myeloma and despite 3 tries, 2 weeks apart, it failed to reach such dizzy heights before Aspire pulled the plug and declared the trial full and closed.

So the gamble of waiting for treatment to qualify for the treatment failed.. in a way… because even if I had qualified (all other qualifiers except for the urine were reached) I would still have to go through the randomisation of 50/50 selection for the Carfilzomib. The non-Carfilzomib arm of the trial was Revlimid and Dexamethasone… which was the next treatment lined up for me anyway.

So, I started on Rev & Dex on March 1st this year and I am currently on Cycle 3… after which, if it is deemed suitable, i.e. all bloods and levels okay, it will be my treatment for the foreseeable future.

I reported my efforts here and no-one came forward saying they were active on the trial but you never know… unfortunately we have new MMer's and people down the line, joining us every week, so you may well find someone coming forward.:-)

I hope they do.. and I hope the trial comes to you with no hold-ups or drawbacks. My consultant in Nottingham is very hopeful for Carfilzomib… and although I may have to wait a year… or two… so am I.;-)

Regards

Dai.

[terryl1Participant]

Hi Dai, thanks for the feedback and I wish you the best of luck with your course of treatment. In my trial, all patients will be getting the carfilzomib, etc., as it is a single arm trial. It is very similar to the trial which is ongoing at the University of Michigan by Dr. Jakubowiak who presented his very positive findings earlier this year. He remarked that this protocol may change the landscape insofar as current myeloma treatment is concerned. Knock on wood…. There is a lot of talk here about pomalidomide as well as being a game changer. In fact, there are several clinical trials combining carfilzomib and pomalidomide. Curious what those results will be. Hopefully, all of these new agents will be approved soon and get to all of us fast. Good luck! Terry

[johnfromlaxParticipant]

Dear Terry,
I am interested in joining the CRD trial in NIH as I qualify and fit the criteria pefectly. If you could please pm me, I will give you my phone number and email so we can correspond. Thanks so much!

[sanParticipant]

Hello Terry, thank you for the information, and good luck with the trial, hopefully soon there will be good news re improved treatments for all, my Mum is on the RCD clinical trial as her first treatment after diagnosis, not sure if thats good or not!! there are so many combinations out there, best wishes San.

[Author]

Posts