MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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deardad's picture
Replies 10
Last reply 3/24/2012 - 7:26am

To the international community on here you may not know Jim Stynes and he wasn't as far as I know I member on this board.

He fought this disease (stage 4) for nearly 3 years using his high profile as a Australian rules footballer to educate others. He passed away this morning, he was 45yrs old.

From what I understand he had numerous brain surgeries and in the end was on a antiPD1 trial here in Melbourne which was very new at the time - Nov 2011.

Another brave warrior lost.

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BrianP's picture
Replies 8
Last reply 4/2/2012 - 10:13am

I'm in my 4th month of interferon treatment.  All things considered it is going well.  I wanted to see what other patient's oncologist recommend for their scan schedule.  From what I've seen it seems like most recommend a brain MRI and petscan every three months for the first year.  I'm coming up on my 6 month scan and the oncologist is only recommending the petscan.  I'm insisting on the brain MRI as well.  Was curious what others are doing. 

Brian

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JakeinNY's picture
Replies 5
Last reply 3/19/2012 - 9:22pm

I haven't been on our site in several months but wanted to post that as of January 15, I am now 4 years, 3 months with clean PET/CT scans since the surgery to remove a malignancy in my parotid lymph node. I thank God and my doctors.

Do the best you can.

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ScienceDaily (Mar. 8, 2012) — Researchers say they may have discovered a new drug for the treatment of metastatic melanoma, one that uses the patient's own tumor cells to customize the therapy. The findings are published in the March issue of the journal Clinical Cancer Research.

The drug is sunitinib, which has already been approved by the FDA for the treatment of kidney cancer and gastrointestinal stromal cancer. In this Phase II clinical trial sunitinib proved effective against rare forms of melanoma that occur on parts of the body that the sun doesn't hit -- such as the mucosal surfaces of the mouth, the soles of the feet, and the palms of the hand.

"This form of skin cancer is particularly difficult to treat because it is resistant to chemotherapy, one of the standard therapies for most forms of cancer," says David Minor, MD, Director of Inpatient Oncology at California Pacific Medical Center -- part of the Sutter Health network -- and the co-author of the article. "Studies show that single-agent chemotherapy only produces a response rate of between 5 to 20 percent in patients with this form of cancer. So having one that produces a response of more than 50 percent is a big advance."

The forms of melanoma that were targeted in this study all have mutations in a gene called KIT, the tyrosine kinase receptor gene. The mutation makes an abnormal protein which then drives the growth of the tumor cell. Sunitinib works by turning off that protein and slowing down the cancer growth.

The researchers tested sunitinib in ten patients with advanced stage 4 metastatic melanoma who had the KIT mutation. Of those ten, four were able to complete the trial. Three of the four responded positively to the medication; one had a complete disappearance of her liver metastases for 15 months; the other two had remissions of seven months and one month.

"We need to be cautious because of the small number of patients involved in this trial," says Mohammed Kashani-Sabet, MD, a senior researcher at the CPMC Research Institute, Medical Director of CPMC's Center for Melanoma Research and Treatment, and the co-author of the study. "However, these results are encouraging because they are far better than we would expect to see with chemotherapy for this form of melanoma, and for this stage of the disease."

The researchers say that melanoma, like all cancers, is different in different people and that there are different gene mutations depending on the form. By identifying those who have the KIT mutation -- and sunitinib would not help a patient unless they had that mutation -- they are able to personalize the cancer therapy.

Because it has already been approved for the treatment of other cancers sunitinib has been well studied in larger patient populations. Side effects can include fatigue, low blood counts and a rash, but it is otherwise well tolerated by most people taking it.

The next step is to test the drug in a larger multi-center trial, possibly even involving patients at an earlier stage of the disease.

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

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JoshF's picture
Replies 1
Last reply 3/21/2012 - 7:58am
Replies by: FormerCaregiver

Had scan this past week. Just about a year into it and another clear scan. Also had genetic testing done BRAF was negative. Doc is going to continue to  treat as Stage 4 in regards to  follow up as with never finding a primary he would like to stay aggressive. Nearly a year later but I'm still confused. I'm blessed and thankful that I found this site and all the warriors on it. I'm sending positive energy out to all of you...keep on!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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QueenBZ's picture
Replies 5
Last reply 3/21/2012 - 6:42am

I hope I am not overstepping proper protocol but I had noticed KatyWI had not been active on the board for a while.  Sadly, she passed away Friday, March 16th.  I was in email contact with Katy on occasion being that we live in such close proximity.  She had completed the WI Ironman on September 11th with the proceeds going to MRF and her positive attitude about life just struck a cord with me. So hard to believe in just 6 months someone can go from the success of completing the grueling test of endurance of an Ironman to succumbing to this beast.  I have such a heavy heart and my prayers are with her family.

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Candi13's picture
Replies 23
Last reply 8/18/2014 - 10:47am

Hi,

I am posting my good news to share information on the Merck PD-1 trial.

I started this trial on 12/20/11. After only 3 infusions, I could see 2 subq's on my leg and chest start shrinking.

Last week, I had my first 12 week scans since starting to take this drug. My doctor told me that there was NO CANCER
anywhere in my body.

Starting the trial, I had tumors in my leg, on my chest and BOTH lungs. Being stage 4, this is truly a miracle after
only taking this drug for 12 weeks. My doctor told me, I am a “complete responder”.

I know of 2 other patients who started this trial in December 2011 with me. One patient with lung mets is a complete
responder. The other patient is a partial responder.

For those interested in this trial, here is the link:
http://clinicaltrials.gov/ct2/show/NCT01295827

I know that there are openings for this trial at UCLA Medical Center with Dr. Ribas. His email ARibas@mednet.ucla.edu

Good Luck to Everyone fighting Mel.

Candi

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I am a stage IV warrior and I can offer some bits I have learned. First I am so proud of this room and what it does for us.

I have been in a Phase II/I study with BRAF/MEK, with my stage IV metastatic Mel, for 15 months now. Tumors vanished except for a pea sized critter in my lung. Someday, somehow I want to fight my way to NED like so many of you.

When I had the two diseases above, both from melanoma, the thing that worked was Crisco (the white stuff in the can) to relieve the itch. The expensive prescriptions failed me. Just take a handful and rub it everywhere below the neck. It will soak in and give relief as it moisturizes the skin. Moreover it is durable for about 10 hours. If you wait about an hour before you go to bed, it won't even stain the sheets.

EN makes your legs look like a pair of tights loaded with door knobs. Then it turns to a multicolored bruise, and finally leaves. About a month for the whole cycle with me. It is our immune system getting ramped up again spoiling for a fight, and it came after me. My oncologist was surprised it hit me in the 13th month, instead of earlier, and the dermatologist was happy that my immune system was working so well. It goes after subcutaneous fat in the extremities and it made my lips look like I kissed a steam pipe. There is a lot of high excitement connected with fighting this disease.

The history of the world is the battle between superstition and intelligence.

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I hope this works for MEK inhibitors as well.  Looks like they are getting closer and closer.  Lets all pray that this the year.

 

http://www.sciencedaily.com/releases/2012/02/120228185828.htm 

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Bob B.'s picture
Replies 25
Last reply 4/30/2012 - 1:31pm

Hi,  Will try to avoid sticking my foot in it- as I have with some previous posts under "Overtreatment?"....  First primary, a "lentigo maligna melanoma", was excised two years ago.  No recurrence- that I am aware of.     Second primary "superficial spreading malignant melanoma" I've been tracking 8 months, located 20 cm from the first primary, was excised three days ago.    Pathology received today is neither entirely innocuous nor very serious. Breslow, mitotic rate and Clark are all "ok" or better.

QUESTION:  What are "adequate margins", given the diagnosis/description below?  ("very close to the lateral margin...very narrow margins..narrowly excised")

DIAGNOSIS:  "Malignant Melanoma, 0.74mm Breslow's Depth, Clark's Level III.   The lesion has been completely excised, although it extends VERY CLOSE TO THE LATERAL MARGIN.

DESCRIPTION:  There is an asymmetric proliferation of atypical melanocytes arranged in nests and singly at the dermoepidermal junction as well as above it, with extension into the papillary dermis.  The lesion measures 0.74mm in depth and would be classified as Clark's level III, as the papillary dermis is filled and expanded.  There is pigment deposition throught the lesion.  There are less than one mitoses per millimeter squared.  There is brisk tumor infiltrating lymphocytic inflammation.  There is no evidence of ulceration or lymphovascular invasion in the sections examined.  The findings represnt superficial spreading malignant melanoma, which has been completely excised, albeit WITH VERY NARROW MARGINS.   One of the sections also shows small nodular masses of basal neoplastic cells with nuclear pleomorphism attached to the basal layer and surrounded by a loose fibrous stroma and mild inflammation in the superficial dermis, findings typical for a superficial type of basal cell carcinoma.  This has also been completely, BUT NARROWLY, EXCISED.  

Surgeon's recommendation:   Re excision, increasing margins by 1 cm each side.

I requested of pathology:  Quantified definition of "VERY CLOSE TO THE LATERAL MARGIN....NARROWLY EXCISED....VERY NARROW MARGINS".

Response to "Overtreatment?" post was overwhelming.  And enlightening, particularly from Janner, JerryfromFauq and Minnesota.  Many thanks!   I would much appreciate your opinions about "Margins?", in light of the pathology.   Thanks very much!  

 

The Only Good Legend is a Dead Legend.

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LynnLuc's picture
Replies 2
Last reply 3/17/2012 - 4:57pm

I just rec'd e-mail from a fellow warrior and he had done a interview with BSK ...John Patrick Michael Murphy....

http://sto-online.org/node/27816?tid_op=or&tid=All&tid_1_op=or&tid_1=All&tid_2_op=or&tid_2=141&field_asset_search_value_op=contains&field_asset_search_value=John Murphy

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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I just rec'd e-mail from a fellow warrior and he had done a interview with BSK ...John Patrick Michael Murphy....

http://sto-online.org/node/27816?tid_op=or&tid=All&tid_1_op=or&tid_1=All&tid_2_op=or&tid_2=141&field_asset_search_value_op=contains&field_asset_search_value=John Murphy

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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"There are not many times that I am truly speechless but this is close to being one of them. We saw Dr. Stewart and Dr. Yang yesterday and if you noticed, the sun got just a little brighter about 2:30 yesterday afternoon. That is because they told us that all of Patty's tumors have shrunk 26%!!! The first thing Dr. Yang did when he walked in the door was to give Pat a hug. He and Dr. Rosenberg both are extremely excited about this. Apparently they were discussing Patty's progress on rounds up on the floor in the morning before we got to the hospital. We stopped up to see the gang on 3NW and all of the nurses were excited to see her as well. We’ll be going back in another month for more scans, after all it is research and she is a pioneer! Don't know what else to say, just thank you everyone for all of the prayers, cards and words of encouragement. And thank you Lord for watching over Patty. Have a wonderful day!!  "

The shrinkage is so exciting. This means that Dr. Roesenberg's theory of secreting IL-12 from engineered T-cells is a plausable therapy.

Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells 

 

 

Best Regards,

 

Jimmy B

http://melanomamissionary.blogspot.com/ 

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Angela C's picture
Replies 7
Last reply 3/19/2012 - 7:55pm

Hi everyone.

I just got home yesterday after having surgery last Thursday. They removed a lymph node behind my pancreas and one on the side of the pancreas. They are currently working on growing TIL from those tumors. I was in the hospital for six days. It was a difficult surgery because the lymph node behind my pancreas was in between three big blood supplies. This is the longest and hardest surgery I've had to date and recovery is a little slower. I have about a 10 inch incision on my stomach that is stapled shut. Ouch! I think I'll be on the pain meds longer than I usually am.

I should get a phone call next week with the status of my cell growth. If things look good, I should be headed back in 2-3 weeks for chemo and then to put the cells back in.

I'm participating in the IL-12 TIL Study. I'll keep you guys updated as the process continues.

http://www.cancer.gov/clinicaltrials/search/view?cdrid=689250&version=He...

Be kind, for everyone is fighting a great battle. -Plato

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