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.

Expand/ Collapse Topic
Replies By
View Topic
michaelinsocal's picture
Replies 3
Last reply 9/18/2015 - 3:43pm

Dx Nov 2013 stage 3A

Second annual scan results in..... I'm happy to report NED. I am blessed. 

The one thing I wasn't happy about is that the doctor only ordered a CT of my pelvic and chest. I wanted a full body, especially the head. I'm sure my DR is following guidelines but those are often influenced by Insurance companies. The thinking behind the decision to scan only the pelvic/chest is since my primary was on my outer left foot, if there was progression it would appear first somewhere chest down. That's not always the case as I've read.

For now, I'm going to count my lucky stars. I will follow up with Dr Michael Wong at USC for a full review of treatment and scans so far.

Keep the faith!


Login or register to post replies.

Debbieamccoy's picture
Replies 13
Last reply 9/21/2015 - 10:24pm

4 weeks ago all my scans were clear to day a MRI showed probable mets to liver after first dose of yervoy 3,weeks ago I am so upset and discouraged any and all advice 

Login or register to post replies.

Christine.P's picture
Replies 17
Last reply 9/21/2015 - 10:04am

I am currently said to be a stage 3b melanoma patient and will be having scans next week to determine if there has been any spread to distant nodes or other organs. My surgeon feels optimistic that it hasn't spread past the one (rather large) sentinal lymph node that he removed two weeks ago.

He also seems to be sort of half-heartedly recommending Interferon if I am indeed staged at 3b. It's as if he knows the statistical benefit isn't that great, but has no other options at this stage. I will know more at my next appointment next week. 

My question is this: Are the side effects of Interferon worth it to see only a 3% improved chance of longer-term survival? I am researching some articles and leaning toward not doing the Interferon at this time, but also don't want to be too hasty in deciding. 

Does anyone have information or personal experience that can help me make this decision? I want to fight this insidious disease, but also don't want to live with flu-like side effects - and worse - if the benefits are negligible. 

Thank you in advance for your input.

Christine P. 

Login or register to post replies.

Julie in SoCal's picture
Replies 2
Last reply 9/17/2015 - 11:36am
Replies by: KimW, Scooby123

Greetings Friends!

Just wanted to let you know that my last scans came out all fine.  No problems whatsoever!  However, a new piece of funk (in transit met) has popped up in same lymph node basin as all the others.  It is very, very small (smaller than a split pea), and it's possible that we just didn't see it before and it is slow to respond to Pembro.  But it's also possible, highly likely, that it has come up and is not responding, or slowly responding.  Of course this discovery moves me once again from complete responder to partial responder, and now no longer NERD - No Evidence of Recurrent Disease.
I'm disappointed, but not surprised; this is my fourth recurrence.  So the plan is to watch this sucker, keep track of it and see if it's just slowly going away (and we missed it before- it is very, very small) or if it is a new and unresponsive met.  And gratefully, this really doesn't change anything in the short term.  I'll continue Pembro treatment for at least another 8 infusions unless something drastically chances with the stupid intransit, or it becomes obvious that Pembro has stopped working.


Login or register to post replies.

peppi's picture
Replies 2
Last reply 9/19/2015 - 2:19pm
Replies by: peppi, vivian

I have both Lupus and Melanoma and am finding it difficult ot find treatment options other then surgery as my oncologists will not give me immunotherapy due to the Lupus. Does any one know of other treatment options or trials for those with both Lupus and Melanoma? I am stage iv with my 2nd wide excision on July 11th 2015. My treatment plan is to repeat ct in two weeks with close monitor. I had mets to one node under my right armpit. The idea of monitor and wait to see is not comforting. Any suggestions?


Login or register to post replies.

Never Gonna Stop's picture
Replies 21
Last reply 9/23/2015 - 4:02pm

As I was approaching the start of my interferon therapy (for stage 3A), I was troubled that there were seemingly few stories out there of people tolerating the treatment well. As I'm pretty deep into my treatment now, I wanted to share my experience to give hope to some of you earlier in your journey.

I have done the month of infusions, and I am now in my 5th week of injections. I'm not going to say that it's been a fun time, but interferon has not been the terrible monster that I had feared it would be.

The treatment is a constant series of peaks and valleys, but I'm surprised that the valleys aren't as low as I expected. Personally, the flu-like symptoms tapered very quickly. I felt horrible the very first night, kind of crappy the second night, but after that, in general, I rarely woke up at night from discomfort. The biggest problem became the burning sensation in my skin and the "pins and needles" feeling, but those have tapered off as well. I received 2 weeks off before my injections, and so the flu-like symptoms returned for the first night, but immediately tapered afterward.

I had 2 days of nausea during my infusions, but none sense. I have frequent stomach "uneasiness" on my injections, but it doesn't progress to bad nausea. It can be hard to get moving in the morning after my injections because my body feels a little "heavy." Sometimes I have some pretty bad joint pain, but Advil is a lifesaver.

I do warn to keep on eye on the mental side effects. I feel like my temper is shorter, and I'm slightly more irritable, and sometimes I feel like my motivation to do things is down. All of these things come in waves though, and I often feel COMPLETELY normal.

Going into interferon, I decided to be extremely proactive about my health. I slept more, decreased my stress levels, renovated my diet (healthy lean meats and veggies...cut out sweets and processed carbs), and I started a nutrition system. Feel free to message me with any questions on the diet or nutrition system, but I truly feel like living as healthy as possible has helped me to thrive through this interferon treatment.

Everyone is different of course, but it is possible to take this beast of a treatment head on and do very well! And, so far so good...I had a PET scan two days ago, and it was all clear!

I have cancer, but cancer doesn't have me!

Login or register to post replies.

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.


Login or register to post replies.

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. 

Login or register to post replies.

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.

Login or register to post replies.

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?


Login or register to post replies.

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

Login or register to post replies.

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."

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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"

Login or register to post replies.