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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Just wanted to give an update on husbands scopes this morning, as it also helps me to type away and get my thoughts in order.

After last infusion of Keytruda on 9/2, we noticed the Red blood count and IRON has been dramatically going down for weeks and tested + for blood in the stool. This, along with his nagging stomach pains when he eats prompted a an endosopy and colonoscopy this morning. Docs wer hoping that the issues were bleeding related to possibe ulcer from the high dose sterioids he just came off of for pneumonitis in July.

Unfortuneatly, they found a tumor yet again in his small intestine. It was close enough to the stomach though they could reach it with the scope. This is an all too familiar story for us. Had tumor and small bowel resection in 2013. Told us then they couldnt get it all.

Not sure what the next step will be fo us. Next  Wed is our normal 3 week infusion week so guess we will know more of a plan then. I am assuming at this point, he will have to come off treatment to prepare for surgery. And surgery will I am assuming happen to stop the blood loss for now.Or maybe they will want to do the camera again to see what else has not been seen further down before opening him up?  At this point we are so unsure of what will happen. Very disheartening when treatment is so hard ans still cant keep it from progressing. Had CT scans just 3 weeks ago and although they have mets they are didnt pick up anything in the small intestine.


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Christine.P's picture
Replies 5
Last reply 9/17/2015 - 11:52pm

I recently had two malignant melanomas removed, a SLN biopsy in my right groin, and what turned out to be a full dissection of the lymph nodes under my left arm. This was intended to be a biopsy as well, but as soon as they got in, they could see the cancer had spread. In addition, the melanoma on my leg was large and deep enough that I needed a skin graft. I am currently stage 3 but waiting to do an MRI and PET scan once I heal more from the surgeries

My question is this. How have others who have had the full dissection under an arm recover from it? My arm is part numb and part "prickly" - as if my arm was asleep and is waking up to pins and needles. The surgeou says it "might" get better - but it may not. It drives me crazy

Is there somethng I can do to ease the discomfort of the numbness and tingling? . 

Christine P. 

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JakeinNY's picture
Replies 10
Last reply 9/22/2015 - 8:15pm

I haven't been on our site for about 2 years, but I'm so happy to find out today that my PET/CT scan was negative. I'm now 8 years NED since my surgery performed by Dr. Dennis Kraus (thank you Dr. Kraus!) in New York. Although my surgery was done at Sloan Kettering, I am tremendously grateful to my oncologist, Dr. Anna Pavlick at NYU, for the fantastic advice, warmth, and general down-to-earthness she has always shown. I would tell anyone with melanoma to go to Dr. Pavlick at NYU. Her and her staff are the best and they strictly deal with melanoma. If you don't love dealing with Dr. Pavlick, you will not like dealing with any doctor! I thank God that I chose to go with her after my surgery back in 2007.

Do the best you can.

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pmeyers's picture
Replies 2
Last reply 9/16/2015 - 3:37pm
Replies by: Bubbles, Jubes

My mom was diagnosed with stage 4 melanoma at the end of August. Most of the tumors are in her liver and lungs and one behind her left eye. 

She received her first dose of Keytruda about 10 days ago. She went home from the hospital two days after receving the treatment but went back into the hospital 3 days later with severe abdominal pain. They were able to manage the pain but she has grown very weak and now needs oxygen to help her breath.

The doctors aren't sure if it is a reaction to the treatment - if so it seems quite severe and sudden - or just the cancer getting more aggressive. The doctors want to get her well enough to receive her next dose of Keytruda the end of next week. 

Does anyone know if her worsening condition could be related to the Keytruda? I'm trying to remain hopeful that it could just be getting worse before it gets better?


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sweetaugust's picture
Replies 10
Last reply 9/22/2015 - 10:04am

Hi all,

As of October 1st it will be 3 years since my stage 4 diagnosis.  I've been on Keytruda (10mg every 3 weeks) since Halloween 2012.  I'm still on it with no end date planned and really am not having any side effects from it at this time.  

I scanned again a few weeks back and all is great.  I haven't really been on the site for the last few months because I was out enjoying the summer and just enjoying life with my boyfriend.  I quit my job in June and moved out of the city to live by the ocean and live a more natural, calm life.  All is great and I hope you all had a great summer as well.

All my best, Laurie

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Bruce Davis's picture
Replies 7
Last reply 9/18/2015 - 7:05am
Replies by: Anonymous, DZnDef, uccio2014, mrsaxde, JakeinNY, Jubes

Feel fortunate to have passed 4 years on Vemurafenib. I've had it easy compared to most who post here.

My heart goes out to those who are struggling.

Bruce Davis

Presently it's "Don't give up."

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jamieth29's picture
Replies 4
Last reply 9/15/2015 - 12:59pm

Just wanted to give a update. I have been on the braf drugs for 6 weeks and they seem to have done there job. All of the spots have shrunk to tiny black dots. I saw Dr Luke on sept 8th and he told me the black spots are dead melanoma cells. He said when they die they leave the black pigment behind. All the spots were shrinking after 3 days of starting the drugs. I have a ct on thursday to see if the one 18mm node that showed on my last pet has shrunk also. I now will meet with the surgeon on the 29th to go over surgical plan. I know braf drugs most likely work for only a median of 10-11 months. My question is if these are dead cells and if one spot gets missed in the surgery is the short time i was on braf enough to keep spots from coming back? Not sure anyone can answer that but one of the questions i had. The long term plan is surgery to get lymph node and resection of in transit spots then recover and hopefully start some type of immunotherapy, Not sure what one yet. They are now offering the expanded excess trial of ipi/nivo at uw madison which is pretty close to me. But not sure how this is going to all play out if I'm rendered ned after surgery I dont think I'm eligable for that. If not I'm hoping to start a pd1. We'll see...I'll keep updating this thread.

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surreygirl's picture
Replies 4
Last reply 9/17/2015 - 7:49pm
Replies by: ET-SF, surreygirl, jamieth29

Sorry for the second post, but does anyone know which is the best treatment to have if I have to have treatment! I beleive Immunology is the best but any paricular one!! Any advise would be gratefully received.

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surreygirl's picture
Replies 4
Last reply 9/16/2015 - 3:39pm
Replies by: stars, ET-SF, casagrayson, CHD

I am going to see the Oncologist tomorrow, but I have been able to view my results on the web because I can access my medical reports on line with a "key" and it says MM site unspecified. Any ideas as to what that means, obvioulsy it is not "in situ" which I had hoped it is also 172.9, well I think that, that does mean "site unspecified"

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Rita and Charles's picture
Replies 2
Last reply 9/22/2015 - 8:23pm
Replies by: wasserd, marta010

Hey there, my husband has been having great results on the braf combo trametinib/tafinlar - from his June PET to his late August CT, his lung tuomor shrunk by half, lymph nodes regressed and no new tumors in his lung. Yay!  Recently though his left ey has gone completely fuzzy, he can't see out of it.  After going to his opthamologist today he learned he as Iritus - evidently 1% of people have eye side effects.

He has been prescribed a steroid eye drop, we haven't heard from his oncologist yet if this will in anyway affect his tafinlar usage. We don't want to stop or stall using the combo - it is working.

Any similar findings out there??

Thanks, Rita


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michaelinsocal's picture
Replies 4
Last reply 9/16/2015 - 12:29am
Replies by: Patina, Anonymous

I wrote a separate topic requesting recommendations for a local melanoma specialist in Southern California. The two names that came up repeatedly were Dr Steven O'Day and Dr Michael Wong. My loving wife researched both and came across  a bit of shocking news about Dr O'Day.

As of 2014 he had his certification suspended and he was put on 3 years probation by the California Medical board for abuse of controlled substances. There were other numerous allegations against him dating back to 2011. Complaints were filed against him at his former work location at the Los Angeles cancer clinic which led to him being terminated. 

For anyone who were/is or considering becoming a patient of his I highly recommend  doing your own background check on him. A simple google search of Dr Steven O'Day and probation will return the doctrine and legal case filed in California. It is also outlined on his professional profile at health 

I hate to report such findings as Doctors who specialize in our area of cancer are hard to find but if rather find one that I can have a trusting relationship with then one with a not so good past.


As a side note, I'm chosen Dr Michael Wong. I'm planning on calling him this week to setup an appointment to go over my treatment history and my 2nd annual scans which I just took last Friday. So far in my wife and I research, he has a sparkling resume and is very active in research and treatment of Melanoma.

Again, thank you all who responded and offered your recommendations. The better we're informed, the better we can chose the right path to a long and healthy life.



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Anonymous's picture
Replies 3
Last reply 9/16/2015 - 12:51pm
Replies by: ET-SF, Anonymous, lmhl

My son was dxd in Jan of 2005 stage 3 melanoma, age 21 . Started on top of his head. Lymph glands were involved in right side of neck. He had modified radical neck disection, then a couple of months of GMCFS, another MRND,  radiation to head and neck, 1 month high dose interferon, then 11 months of low dose interferon. He has been NED since 2006. Today as he turned his head I noticed a small lump on his jaw line, same side as melanoma in lymph glands. Are there lymph glands along the jaw bone? He just last week saw his derm, & has been to the dentist within last 3 months and has x-rays on his teeth. How long should he watch and wait? Then where does he go to have it checked, oral sugeon, surgeon who did his neck disection, ENT, oncologist, dermatologist?  I am more then a little concerned!


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Anonymous's picture
Replies 1
Last reply 9/12/2015 - 4:45pm
Replies by: Anonymous

Brief history: 3b amelonotic, positive ulceration, mitotic 18++! . I chose watch and wait, what am I waiting for??  A few inconclusive lymph node biopsies. Now what? I have what feels like a lypoma on my forearm of my effected side, is this what I'm waiting for or is this just part of the 40 pounds I've gained ? Really what am I waiting for, lumps or bumps, I found lump before and surgeon laughed it off, so really what am I waiting for

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Anonymous's picture
Replies 3
Last reply 9/12/2015 - 11:58pm
Replies by: stars, ET-SF, Julie in SoCal

I don't want to go to the doctor... Please tell me if they are common moles or melanomas. Thank you! - you can zoom in to see it more clearly

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davidstewart's picture
Replies 4
Last reply 9/13/2015 - 12:46pm
Replies by: kylez, Mat, arthurjedi007, Anonymous

I know it is case by case but is there a rule of thumb?

I was diagnosed with metastatic melanoma August 31. We got in quickly to see the expert at UNC Chapel Hill. We have been encouraged to get a second opinion rather than rush into whatever is offered initially for treatment and I wanted to explore possible clinical trials. So we decided on M.D. Anderson (either of the two Dr. Hwu's). I learned on Friday that it may be 3 to 4 weeks before I can be seen. I asked my local expert to intervene but realistically there is little he can do.

Having to wait so long definitely ups the anxiety even though we have been told that three weeks is not unreasonable. Anyone have any words of wisdom that will help us sort this out?


Thanks, David

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