newly diagnosed: help with clinical trial info please?

mimi0201
mimi0201 Member Posts: 2
edited March 2014 in Skin Cancer #1
My husband was recently (last week) diagnosed with Stage III. I'm a bit overwhelmed by clinical trial web searching. We are interested in the PLX 4032. Could anyone help guide me through? Thanks, Mary

Comments

  • GinSue
    GinSue Member Posts: 19
    #2
    Clinical Trial Info and my experience
    Hi Mary!

    Fortunately, I was blessed with an excellent Oncology team. I live in North Carolina and received the majority of my care at Duke but started out at UNC Hospitals in Chapel Hill. Chapel Hill performed most of my surgeries but when I developed in-transit disease, they did not have a treatment plan and referred me to Duke. When it became clear that they could no longer provide me the care I needed, my oncologist at Duke referred me to another Oncologist who specializes in Melanoma so we could pursue clinical trials and find one that was right for me. I was referred to Dr. Keith Flaherty of Massachusetts General Hospital in Boston. His research nurse is Caroline Kuhlman. The phone number is 617-724-4000. We were VERY pleased with the information they gave us. My husband and I flew there to discuss available trials and Dr. Flaherty recommended two options for me (although there were more, these were the most promising). One was a trial at the National Cancer Institute (NCI) and the other was the Plexicon trial by Roche (which is now under a different name). Since I had already been tested to see if I had the BRAF mutation of melanoma and I was positive, his team found a spot for me on the trial in Texas. We are flying back and forth to participate in the trial. It is required that the patient had received and failed a previous treatment and be BRAF positive. This is a Phase II trial and it is called NP22657 and the drug name is RO5185426. However, I think all the spots have been filled but it is worth checking into. Even if your husband has been tested for the BRAF mutation and was negative, there have been reports of both false negatives and false positives. If you find an opening, they will do their own testing to confirm either way.

    They are also beginning a double blind study of the same Plexxikon drug which means there is a 50/50 chance you will get the drug or another treatment call Dacarbazine (sp?) which has also shown some benefit. Either way, you will be getting a treatment drug and not a placebo. For this particular study, the patient must be treatment naïve, meaning they must not have had any previous treatments for the melanoma. Follow this link to learn more about this trial. http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=658966&version=HealthProfessional&protocolsearchid=7423800

    As for searching for clinical trials I have found two websites that contain good info. Try http://clinicaltrials.gov/ and http://www.cancer.gov/clinicaltrials The second is the National Cancer Institute website.

    It is a daunting task as the language is not always easy to understand but most trials will list a contact and they are usually very helpful. Also, ask your oncology team to assist you with finding a trial or refer you to someone who can. If you don't feel like you are receiving the care you need from your oncology team, then please seek an oncologist elsewhere.

    I hope this helps you and good luck with your search. I know this is a difficult situation but there is hope.

    May God bless you and your family!
  • NailBitingHusband
    NailBitingHusband Member Posts: 23
    #3
    PLX4032 is now known as RO5185426
    My wife started a clinical trial last week for PLX4032, know known as RO5185426. Be careful when choosing a clinical trial, though - the Phase III trial only provides 50% of the patients with the drug, and the rest get chemo. There is no "end-point" for those on the chemo to get the trial drug, either. My wife started the new Phase I trial for the same drug. Yes, it's a Phase I trial, but its the same, exact drug - they are testing how it will react with common, everyday drugs like prilosec, caffiene, stuff in Robetussin (sp?), ect. Best part is that everyone gets the drug. We are going back and forth from UCLA for it, but the Phase I trail is also approved at Vanderbilt in Nashville.

    My wife was diagnosed in November with Stage 4. This sucks big time, but we are fortunate that we now live in an era where huge strides are being made. You can thank the mapping of the human genome for a lot of this, too.

    Best of luck with however you decide to go!

    M
  • NailBitingHusband
    NailBitingHusband Member Posts: 23
    #4
    Here are links to a series of articles that appeared on the front page of the NY Times last week on PLX4032 / RO5185426:

    h​ttp://www.n​ytimes.com/​2010/02/22/​health/rese​arch/22tria​l.html

    http​://www.nyti​mes.com/201​0/02/23/hea​lth/researc​h/23trial.h​tml

    http://www.​nytimes.com​/2010/02/24​/health/res​earch/24tri​al.html?hp

    M

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