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March 20, 2013 at 11:35 pm #21125
So my sister has a meeting with a new oncologist tomorrow and I can’t be there. History is one giant mole removed about 16 years ago but no follow-up. 1 year ago, Stage 3 or 4 with 3 surgeries in the same groin area that they said were clear margins and NO lympgh node involvement. Last week, 3 to 4 new tumors rught along the scar line that are bright white on PET. I think it’s safe to say that we are at stage 4 and chemo or radiation are our only options. “Cherry Picking” obviously isn’t going to work. She is in Tucson, AZ and 50 years old (JUST earned her freaking PHd. in December!!! not that it matters). She is switching to the U of A cancer center and I really wanted to be there but I am in California and have a 7 yr. old autistic boy to care for. I’m trying to help her out with a check-list of things to ask the new Dr. I know BRaF – or + is a good one…what else. everything is isolated in her right groin. She does not want to do that one year long chemo that starts with a “I” that is also used for Hep. C. We threw around chemobilization and radiation but then she just said it was too depressing and asked me to make camping reservations at the beach for her and her grandkids…uuuggg!!! Someone help me please! I soooo want to jump on a plane right now but I just CAN’T.
CyndiMarch 21, 2013 at 1:22 pm #59729jmmmParticipant
Take a deep breath…first of all make sure she’s seeing s melanoma specialist. Chemo and radiation are not first line treatments anymore. She’ll want to discuss Yervoy/Ipi…it’s an immunotherapy that has worked wonders for some patients. Side effects can be very scary, so a specialist is necessary. If she is BRaf+ she can discuss Zelboraf. There are also new trials that look promising…a BRaf/MEK trial is she is BRaf+ and PD-1 trials look promising, too. Stage 4 is not a death sentence…many people on here have been battling for years. Gather info and find a melanoma specialist…that’s the only way she’ll get the most current information and best treatments.March 21, 2013 at 4:14 pm #59730 Thank you for all the good. info. She is at a Cancer Center in Arizona so you would think he/she would be a Melanoma specialist. I will get the Drs. name and look into that. Another question…what are the options for BRaf – patients?March 21, 2013 at 4:59 pm #59731dkmcParticipant Cyndi- Hi & welcome to the place no one wants to be but all are sooo grateful is here! Not sure reading posts what stage your sister is. No lymph node involvement is great. Yes she can keep removing tumors- my husband has had 3 neck disections! But once it went to stage 4 (lung mets-Oct 2011) he was tired of surgery & we decided he needed a systemic treatment & at stage 4 could finally get it – so had Ipi(Yervoy) & he has been NED since. So test tumor for B-raf, Ckit, Nraf(Don has not tested for this yet)…also there are trials which the tumor needs to express a certain protein(vaccine trial) anti PD1 trials sounds promising. Don did do 1 month high dose Interferon at stage 3 & he was disease free for 13 months but it is VERY hard to go through. I don’t think they really encourage it anymore but back in 2009 we did not have many options. Radiation is sometimes used but think long & hard about that. She will need to learn to hunt for trials & please have her view the webinars here to educate herself. Good luck, KarenMarch 21, 2013 at 5:30 pm #59732Catherine PooleKeymaster Good advice so far. So the questions she needs to ask (with someone there to help her keep track is: Is she BRAF positive (her tumor that is) if so, what are the options in clinical trials or Zelboraf by script. If not: PD1 trials are at University of Arizona when I checked last. PD1 has a better response rate than Yervoy, up to 40%. Yervoy has about 15%. But both are good options. There is a specialist there but if she is unhappy there, the Mayo Clinic in PHoenix may be an alternative. Let us know how things go..March 21, 2013 at 6:41 pm #59733buffcodyParticipant I am sure your specialist at the University of Arizona will help you with this right away, but I think a clear reading as to whether this is Stage III or Stage IV is critical to any planning you can do. As you described what you had heard from the initial oncologist, I read behind the lines and came up with what you are currently hearing being Stage III. It will make a huge difference in what treatments are available, let alone what next steps are.March 21, 2013 at 10:16 pm #59734 16 years ago the tumor on her leg was called melanoma by one center and NOT melanoma by another. She just put it out of her mind.
last year she has 3 differnent deep surgeries to remove 2 tumors and one lymph node (I think it was only one). From her scars it didn’t look like her leg should even be attached anymore! They said there was no lymph node involvement and that they finally got clear margins. Appaently they didn’t because the 3 or 4 new tumors are right along a scar line and she said they grew super fast. They said she was stage 4 because of the depth of the tumors. I questioned the Dr. personally. I always thought stage 4 could only be diagnosed is it had metastisized to another area of the body. I don’t know.
My niece will be there today with Susan and I gave her a list of questions and told her to take meticulous notes. I will copy and paste all of your comments and advice and send them to her asap. Thank you allllll sooooo much! And good luck to all of you! CyndiMarch 22, 2013 at 4:23 am #59735
OK I just spoke with my niece and my sister is Braf negative. They talked about Interferon, radiation, and Yervoy. It is still questionable whether she is stage 3 or 4 because the tumors are surrounding the lymph nodes. I will speek personally to my sister this weekend because tonight she is finishing up her 4th consecutive 12 hour nursing shift at a heart step-down unit. Thanks again for all the feedback. Will keep you posted. Cyndi
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