Stage 4

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5/18/2014 11:04am
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Replies: 3

Well a little history April 2007 stage 2a with me on left foot on arch/bottom of foot April 2014 small subq met on left leg stage 3b May 2014 I ended up in hospital with septic shock and was able to get them to image my abdomen and they found a mass 7.5 cm by 6.6 cm and involvement with lymph nodes so now stage 4. Also got them to scan the brain and no involvement at this time. They have sent tissue samples out for gene testing and them will decide on treatment. Any suggestions on which treatment would be best. Still can't believe what has happened. I am seeing a mel specialist in Tucson AZ so got that covered. But any other suggestions would be helpful

DUSTILANE - (5/18/2014 - 2:48pm)

my husband is not BRAF positive, so some of the treatments he could not take...He finished his 4th IPPY treatment the last of April.  We go back end of this month for follow up scans to see if it has worked.

 

His first scan showed a small decrease in the size of the turmor under his arm and small decrease in 2 spots on his lungs.

 

Will see what happens when we go back

 

Dustilane

BrianP - (5/18/2014 - 9:09pm)

Is your melanoma resectable? I had mets in my small bowel and also lymph node involvement. Had it resected. Unfortuantely had a recurrence a couple months later. Even with some great options available today resection is still a very good option.

I'll just give some thoughts for you to consider. It's a tough question and would really take pages to answer thoroughly.

Anti-PD1 should be available in the next 6 - 12 months. If you were resectable that might be a good option for now and hope you don't have a recurrence before anti-PD1 becomes availabe to the masses. It is available in the Expanded Access Program now but you have to have tried and failed Ipi or a Braf drug if you are Braf positive.

Ipi is a good optionand you can get that right now. It's the silver bullet for some. Also has some severe side effects for some. If you went on it and had disease progression right away it may give you the option of getting Anti-PD1 sooner. Do your own research on response percentages with Ipi as well as Anti- PD1 drugs so you can make an informed decision.

Enroll in a trial. This can be an extensive and overwhelming process but if you are a proactive person or you have a good team of medical professionals in your corner this is a good option. A lot of the Anti-PD1 trials are not recruiting anymore but there are still some that open up and there are some that are opening up that are combining Ipi or Anti-Pd1 with an even a newer drug.  I think if I was in your shoes I would be looking hard at those type trials.  Chris just posted a couple examples here

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/promising-new-antibodies

There's also another interesting new twist call IDO inhibitor.  I think it is projected to start trials in combo with PD-1 sometime in the future.

I'm a huge fan of TIL therapy.  Not everyone is but for me that is another good option.

If you are interested in trials you need to go to clinicaltrials.gov and start searching.  You can apply some filters that help narrow your search put it's not the best site for finding trials IMHO.  MRF has a free trial finder service that you can find on this site somewhere.  You also may want to create an account at Melanoma International Foundation (MIF).  The moderator there, Catherine Poole, is very helpful in finding people PD1 trials.

I think generally the best route to go IMO is the immunotherapy route.  I'd try and make yourself as smart as possible in this field.  There are plenty of youtube videos on the subject.  Anything with Dr. Jedd Wolchok or Dr. Jeffrey Weber are great.  On MIF there are some good Webinars on the subject although they are a couple years old now and in this fast moving field that is somewhat dated.

That's probably enough for now.  You are at the toughest point point in trying to select a treatment.  It gets better once you can get started on something and feel like you are taking the offensive against this awful disease.  Good luck with your decision.

Brian

JerryfromFauq - (5/21/2014 - 10:39am)

A lot depends on what the DNA mutation is found to be.  Many of of the bottom/side of the foot melanomas are called Acral Lentigimous Melanoma's and tend to have a C-kit over-expression and/or one of the C-kit DNA mutations.  If positive for the C-kit then there are several targeted chemo's for GIST that can be very helpful.  Since I convinced my Oncologists to put me "off-label" on Gleevec in March 2007, I have been essentially stable with some reduction  in my huge, innumerable lung tumor load.  I have a friend that has a C-kit mutation that has taken Yervoy.  She spent a month in intensive care, twice during her Yervoy treatments, and has lingering long term side effects, but currently is NED, regarding the melanoma..

I'm me, not a statistic. Praying to not be one for years yet.