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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JennerFromIowa's picture
Replies 8
Last reply 9/18/2015 - 9:34pm

Hi everyone.  I haven't been on here for quite some time.  Hope all of you are doing alright and beating the beast.  I've been having some back pain radiating into hip and down my leg.  I have spinal stenosis so that is probably the culprit.  Had an MRI of my hip and all looked fine.  It did show a prominent inguinal lymph node that was borderline in size.  I wouldn't normally think too much about it but this is the hip where I had my WLE and the node basin where I had my Sentinel lymph node dissection and biopsies.  All were clear at that time.  Anyone have a prominent borderline lymph node?  Could use some adviice as to where to go from here.  I don't see my oncologist anymore.  They released me saying it wouldn't come back. We all know they can't determine that.  I was stage IIA with a high mitotic rate 13 years ago.  Thank you so much for any input!

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Anonymous's picture
Replies 8
Last reply 9/21/2015 - 8:51pm
Replies by: Anonymous, ET-SF, Never Gonna Stop, casagrayson

It's two days after being told my biopsy was cancerous, and I'm very worried.  I've been reading up on things as I can.  I have an appointment with a surgeon in 1.5 weeks for sentinel node removal and analysis.

I visited my GP today who had the pathalogy report.  The things I remember from the doctor are:

* superficial spreading

* Clark level IV (this is the part that scares me)

* non-ulcerated

* I saw the number .85mm but don't know in what context (the width was around 5 mm)

* mitosis of 1 / mm^2

Are there any words of encouragement or analysis of the data that I do know so far?  Or is it too early?


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mrsaxde's picture
Replies 15
Last reply 9/18/2015 - 3:49pm

I saw my oncologist, Dr. Melnyk, this morning. She went over the finding from the CT scan I had done on Tuesday. I couldn't have asked for much better results.

I've had three cycles of Keytruda. We noticed some changes for the better in some spots on my skin after just the first infusion. The CT scan confirms that things are moving in the right direction. Here are the most important parts of the radiologist's report:

"Previous studies have shown several nodules in the right lung. The largest of these is in the right lower lobe. This nodule was not demonstrated on a chest CT dated 1/6/2014. On a PET/CT dated 2/20/2015 the nodule measured 7.9 mm. In May this nodule mesaured 7.1 x 4.8 mm. It has now further shown a mild decrease in size, now measuring 5.9 x 3.5 mm. Other nodules in the right lung described on the previous examination in May are again seen on images 89 and 110. These also appear slightly smaller than on the previous study. There are no other lung nodules.

1. 3 subcentimeter nodules in the right lung described on studies from earlier this year appear to be slowly decreasing in size.

2. There has been a significant decrease in size of a previously described hypermetabolic cutaneous nodule involving the left chest wall posteriorly."

This is turning out to be a very good day. :-)


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arthurjedi007's picture
Replies 22
Last reply 9/22/2015 - 9:41pm

I'm kind of upset. Maybe it's the fevers and tumor pains from not having pd1 in so long. I dunno. I wanted to share my md Anderson experience and see maybe this is normal for them and I'm just silly for expecting more. I dunno.

On the 4th I finally made it to md Anderson. I was excited to finally be in the number one cancer place. Kind of neat how their sign marks through cancer.

Went to the melanoma waiting area. Was only a couple patients there. Did the typical fill out forms and wait 20 minutes or so.

Got called back and did the typical registration. Then went back down and way over and did the typical blood draw.

Then back up to the melanoma waiting area. Got called back for the typical vitals and small room. The first nurse was the typical optional trials for tumor and blood bank research.

Second nurse came in and asked some questions about my history.

The doc's head nurse comes in and asks questions and does a physical exam. She says if my kidney tumors are a different cancer they cannot treat me. She also said she will not bother having the trial nurse see me. So when she leaves I'm in tears wondering why I came here. She also gave me a card with the only number to call is the melanoma number which I already had.

Then the doc comes in. The first thing he says is he wants to do multiple biopsies and genetic testing to try and figure out why the medicines haven't worked for me. He also said pd1 and things only work when the person already has the cells in them that can beat the cancer. He also talked about what I think is some type of til and some other things. He wants scans right away. The biopsies right away. And to start the keytruda il10 trial asap. So I'm thinking finally I'm impressed and everything is going to be great.

So the trial nurse talked to me and said due to the holiday she couldn't get the trial started on the 10th but she will shoot for the 17th. She gave me a card how to call her. Also the doc came back and said he would like me to do the optional biopsy part of the trial so he can do more testing and studying of my tumors so I did that.

On the 5th they did a ct and head MRI. Except they didn't do the MRI contrast since that almost killed me at NIH.

The 6th to 8th I was too sick with fevers and feeling awful so couldn't go home. Called the trial nurse on 8th and she said there was lots to get done to make the 17th happen.

On 9th the business financial lady called saying it would be 7 to 10 business days for approval and they just submitted it. She said nothing could happen until then. I start to say not even the doc's biopsies but she didn't let me finish and said nothing can happen. So I'm in tears again.

On 10th I left a message with trial nurse we are going home. I could not get rest in the hotel and only got 2 hours sleep plus the fevers so my parents were getting worried. Trial nurse says she'll keep trying for the 17th. Suddenly someone calls about the biopsy so scheduled that for 21st.

Back home with fevers and feeling crummy. Plus lots of pain from tumors since I'm overdue for my pd1. On 14th trial nurse ok getting my xgeva at home but if I get pd1 might push start date. So opt not to get pd1. Only thing holding up trial is financials so she gives me their number and wants me to call her if I hear it is approved. I call them and still not approved. She also said she would push the start date to the 24th.

On 16th I call financials a couple times and it gets approved. I leave message with trial nurse financials are approved. She calls back and says the treatment area is overbooked on the 24th. They have 58 patients that day. Also for some reason they aren't letting her schedule it for the 25th although they aren't overbooked that day. I say something to the affect that's odd. This is md Anderson. The number one cancer place in America. She didn't know quite what to say.

Soooo. That's my experience with md Anderson so far. I really hope things get better. If not I'm not going to make it much longer like this. Too many tumors and pain and fevers and keep losing weight. I'm sorry I sound depressed. I know others are going through more than me.


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Millykamp's picture
Replies 5
Last reply 9/17/2015 - 6:53pm


home resting after my WLE and SLN surgery...    They only remove one sentinel lymph node...  So is that a good sign? 


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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!


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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 

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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. 

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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.


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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?


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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!

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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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