Home Forums Newly Diagnosed Stage III/IV Questions on New Diagnosis

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  • #21495
    prkerber
    Participant

    Hello all,

    I am representing my cousin’s son, a 26 yo male. He lives in the South Bay part of the Los Angeles basin and was diagnosed 3B in May of this year. My family has been riddled with melanoma, including my mom, who was diagnosed in 2006 and we lost in 2008. I’ve been thru this before but also understand there have been many advances in treating melanoma. I was able to attend the first appointment with his oncologist at Kaiser in Harbor City, Dr. Alicia Holt, and secure a copy of the surgical pathology report. I live in Seattle and was visiting family in SoCal, so any further direct participation is out of the question. His parents are not capable of being his patient advocate, although another family member might be able to go to appointments with him. Before the initial consultation, he underwent scans which showed a “satellite hot spot” near the initial tumor (lower center back) plus a hot spot in the lymph nodes. The sentinel node had already been removed and was positive. Further surgery removed more nodes and I believe at least one was positive. Last week he underwent another scan, the results of which I don’t have. He was referred to Dr. Fawaz Gailani, Riverside Kaiser, for a second opinion. He was told about Interferon or enrolling in a trial and sent home to review various pamphlets. I should also point out he has a mild mental disability and receives his healthcare thru Medi-Cal and Medicaid. Understanding the importance of getting him into a Comprehensive Cancer Center, I asked him to call both UCLA and USC melanoma programs, since he is fairly close to them. He called UCLA yesterday and was told they don’t accept Medi-Cal patients. I plan on calling UCLA and USC today to see what I can find out. If any of the info from the pathology report would be helpful, please ask and I will post it. Any help is deeply appreciated!

    Patrick

    #62045
    Catherine Poole
    Keymaster

    I would double check with UCLA. they are state and federally funded and should accept his insurance. I would lean again the use of interferon, with its associated toxicity and low response rate. I would seek out any clinical trials if you can find any for stage III. I think he needs to be seen by an expert such as those at UCLA, or perhaps at John Wayne Cancer Center in Santa Monica? This sounds like he may be eligible for a stage IV trial if the current melanoma is unresectable. Let us know how things go.

    #62046
    Linny
    Participant

    Hi Patrick,

    Sorry to hear that you have a family member with melanoma.

    There have been several new drugs approved since your mom’s passing. But most of them are for Stage IV patients.

    There’s not much to offer for those of us at Stage IIIA/B yet in terms of approved drugs. But some Stage IIIC patients can partake in trials for Stage IV patients. You’d have to check the particulars of the trial. There also are trials for Stage IIIA/B patients — just not as many as there are for Stage IIIC/IV patients.

    For Stage III, Interferon is still the only FDA approved drug. It has a lot of side effects and only a low percentage of people have any success with it. Fewer and fewer doctors are using it because of the side effects. And since your family member has a mild mental disability, you may really want to do your homework on that drug if it’s offered as an option because some of the side effects are psychiatric.

    Have they given him all his options yet? Back in 2011, I was offered Interferon, Observation only, or clinical trial.

    #62047
    prkerber
    Participant

    Thank you for the responses thus far! I called the oncology appointments number at UCLA and, after being hung up on twice, received a not very helpful response to my questions. The lady basically said that, yes, since he has both Medi-Cal and Medicare, he is eligible for treatment but he must receive approval from Kaiser before he can make an appointment. Maybe I am too cynical but I see where this might be heading. He has always had his care at Kaiser and I’m guessing they won’t want to lose the big $$ associated with this type of illness.

    He said he would make an appointment (on-line) with his GP to request the referral. I suggested he also call the GP and the oncologist in Riverside to try and expedite a response. He also mentioned that he is at stage 3A, not 3B as I had mentioned. I came up with the 3B by putting all the info requested into a “staging tool” on another melanoma website. Some of the data from the pathology report are:

    Nodular type, 4.9 MM in thickness, Clark Level 4

    Tumor Size: 0.7 cm

    Mytotic Index: 3 / sq mm

    Anatomic Level: IV

    No ulceration

    There is also a pathology report on the followup lymph node biopsy in which the reviewing doctor also reviewed the report of the original melanoma biopsy. At the end, he says “thank you for sending this very interesting and unusual case in consultation”.

    Some mistakes were made in my mom’s case and I just don’t want to see another family member go thru the same thing. The melanoma that got my mom was her 5th primary over a 15 years period. My dad has had three primary melanomas over the past 20 years and my brother had his first melanoma two years ago. Thus far my sister and myself (in our 60s) are melanoma free. Our family is paying the price for a lifetime of growing up on the beaches of Southern California.

    #62048
    Catherine Poole
    Keymaster

    For proper staging information go to: http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/Patient/page2#Keypoint14

    Yes, he is 3A because he doesn’t have any positive nodes, but does have a deep lesion that takes him from 2-stage 3. I am sure you will find the treatment at UCLA to be better than Kaiser since they do a lot of research on melanoma there. Sorry to hear about the admin problems, that happens everywhere! Let us know how things go.

    #62049
    prkerber
    Participant

    An update on my cousin’s son. He was unable to get approval from Kaiser to go to UCLA or any other Comprehensive Cancer Center. He became Stage 4 with metastises to the bone (pelvis) as of last fall and has also had satellite tumors recur near the original site. He underwent three Yervoy treatments and was so ill the fouth one was not administered. After Prednisone he has finally returned to feeling fairly well. Subsequent scans have shown considerable shrinkage of the tumors but they are still there. He and his mom flew up from L.A. to Seattle and are staying with me for a few days. We are attending the Northwest Melanoma Symposium tomorrow, which is put on by the MRF. Any suggestions are deeply appreciated. Thank you.

    Patrick

    #62050
    Catherine Poole
    Keymaster

    I would think he is eligible for the Pd1 Expanded Access which is available at both the Angeles Clinic http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspxor

    Los Angeles Skin Institute, http://www.bhcancercenter.com/.

    There shouldn’t be any insurance issue since this is expanded access. He has failed IPI which is a prerequisite. Did he have the BRAF mutation?

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