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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jvictoria's picture
Replies 13
Last reply 7/28/2015 - 11:38am

Hello all,

Melanoma Stage III, I have already distal thumb amputation and sentinel node which came back with two positive nodules.

I'm currently scheduled for Lymphadenectomy 7/31 but have been told it would be a good idea to get scans (PET/MRI) done before; some doctors are saying do scans before, some say do it after surgery. Doing before would mean 3-4 week postponement of the Lymphadenectomy.



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Anonymous's picture
Replies 2
Last reply 7/23/2015 - 4:25pm
Replies by: stars, Anonymous

Good afternoon:

I was dx with stage 1b melanoma last June, had a WLE and SNB based on mitioc rate.  Recently I noticed a small red slightly raised spot on my lower back.  It's further down then where the original lesion was so it's not in my scar.  I have a derm appointment in September so I'm going to keep an eye on it to see if it' get's larger.    Could this be melanoma that has spread from the original spot and would it be red?   

Wishing everyone blessings.


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mrsaxde's picture
Replies 4
Last reply 7/24/2015 - 2:15pm

After getting what my doctor called a "mixed" response to Yervoy, he decided to start me on Keytruda. My most recent scans, the last being a CT scan in May, revealed that internally, my disease appears to be stable. There is one lesion in my right lung that has not changed since last November, and the CT scan picked out two very small lesions in the same lung that were not present on a PET scan that was done in February. But the doctor said they were so small that they may have been there, but they were too small to be caught by the PET scan.

So internally there doesn't appear to be much going on. But I keep getting new skin lesions, which is why the doctor decided to go ahead with Keytruda. A couple of lesions that have been there for a while don't seem to have gotten any larger. In fact, they may have shrunk ever so slightly. But I've had another 4-5 small lesions appear near the site of the orginal excision.

Anyway, I'm looking to hear from people who have received Keytruda following a partial response to Yervoy. What response did you get to Keytruda? From what I've read, the response rate for Keytruda is lower than that for Yervoy. But if you have at least some response to Yervoy, does that mean that you'll have at least a partial response to Keytruda?

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rabbits68's picture
Replies 3
Last reply 7/28/2015 - 5:50pm
Replies by: rabbits68, Aussielyn, dfeng

3 month scan showed tumor regression in lungs, liver and bone! One has disappeared! I am having a few side effects from the meds. Anyone experienced back pain or joint swelling?  My wbc count is getting low and doctor has mentioned adjusting dosage. I am so thrilled about scan but am scared about wbc level.  Any personal experiences? 

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Anonymous's picture
Replies 2
Last reply 7/25/2015 - 7:15am
Replies by: jpg, Anonymous

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Hi everyone and can I just say what lovely support and people on this site. I have been looking and learning has much as possible to help me through my stage 4 lungs liver mels tumours . A brief on my journey stage 2b 2011 but was left a year prior going to my GP for a year on many times worried about a mole was told it looked ok so a year of that before eventually getting to a dermatologist at our local hospital. Mole was taken for biopsy and came back mel 2b had it removed and was told no other treatment apart from 3 months checks for 5 year and if it came back they would catch it in lymp nodes . Was I wrong I was asking them what if due to be left a year it has already in my body but again was assured it would to to nodes first or if a cell had gone my body would probs kill it off . I asked about a scan to check but no follow ups was advices. I wish I acted on my own instinct due to after 4 years checks and telling them my back hurt and scar only to say it was my arthritis and scar tissue eventually did a scan and now stage 4 lungs liver and scatterd else where. Had a course of ippi scans tom scared due to pain where tumours are so worried if it's grown. Looking at treatment anywhere in world can anyone help am in UK am 43 female with 2 children been told clinical trial next no acces to PD1 or nivolumab in Uk am scared and a trial here is chemo and some other tablet sorry do not have details. I thought chemo was not has good as immunatherapy . Any advice would be apriciated .


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Ninniditti's picture
Replies 4
Last reply 7/23/2015 - 9:19pm

Hi all! I am on pembro (EAP) since 6 days now. The first 3 days I was really bad, didn't come up from bed. Very much pain where my tumours are, swetting a lot and felt like having fever. Som itching too. But the fourth day when I woke up, the pain and itching was gone and I am really feeling well, better than for a long time. Has someone of you experienced the same?


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Gordknight's picture
Replies 1
Last reply 7/23/2015 - 3:51am
Replies by: stars

So back in october i was diagnosed with stage 1a melanoma. Had the wle done and a few minor scares since then which after biopsied turned out to be nothing. Well over the last month i noticed a mole raising and becoming inflammed. I finally got in to my derm today and he removed it and said it didnt look too concerning but he said he also noticed another mole that had changed and was becoming a halo nevus. He checked the rest of my trunk area, found nothing of note and sent me on my way.

What did i do? Stupidly i went online to find out that sometimes a halo nevus forming at my age can mean melanoma is elsewhere on the body or even internally! Needless to say im panicing again. Any advice or info or comfort anyone can provide will be most helpful. Oh and he did remove the halo nevus. Thanks.

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mkirkland's picture
Replies 10
Last reply 7/28/2015 - 7:18pm
Replies by: DianaD, Janner, kathycmc, stars, mkirkland, Anonymous

My story starts out kind of strange... a few months ago my fiance and I were moving around some furniture when I noticed a flat mole/freckle on his side near the ribs that had started changing colors half way through. I stayed on him to make an apt at his dermatologist and thank god he did. He was diagnosed with stage 1 superficial melanoma. It measured I believe 0.2 mm. We had an apt with the oncologist surgeon and they cut a pretty cut chunk. Well, since then he has been on me to go get this mole on top of my right foot looked at. Well, I finally went in and this week I received my diagnosis... stage 2 malignant nodular melanoma. I was floored when I received this report. I got a copy of my path report and on the report it says it cannot rule out metastasis. My apt w/ the oncologist is not for almost TWO WEEKS. So of course I am curious about others with this diagnosis and how was surgery/treatments? I am scared & nervous but at the same time I have faith that God will see me through whatever course of action we must take. Any feedback would be greatly appreciated!    

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Erica A's picture
Replies 6
Last reply 7/23/2015 - 4:16pm
Replies by: tcell's wife, mrsriddle, Anonymous, dentholla, stars, _Paul_

Just doing the yearly checkin for my husband, Ken, who was 10 years NED from Stage 4 in June.  Ken is doing great and has had no significant lasting effects from the cancer or the treatment. - he is still going strong and living a normal life these days with only yearly check-ups.  It is my wish that this will give others hope that there can be long term remission from widespread disease. 

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Anonymous's picture
Replies 5
Last reply 7/22/2015 - 7:49pm
Replies by: Mat, _Paul_, Brendan, Bubbles

So I'm having a bit of weird issue with my left eye.  Over the past few days, I've had pain that seems like it is emanating from the back of the eye.  Not debilitating pain, but requires Advil.  My perception in that eye is also a bit off--particularly my peripheral vision.  Kind of like the first few second after you rub your eye and then open it in a light filled area, except that the eye doesn't get back to normal.  Not limiting, but annoying.  I've also been running a low grade fever and my white count is high (hasn't been high since I had colitis while on ipi).  I visited an eye hospital on Monday to rule out uveitis (which they did).  I'm waiting for the results of my pituitary panel to see if this is hypophysitis.  I'll let the group know.  Hypophysitis is listed as a (low probability) side effect of Keytruda.  I know that others (Brian) have experienced it on ipi, but I haven't seen anyone report it for Keytruda.

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_Paul_'s picture
Replies 17
Last reply 7/25/2015 - 11:26pm

Because I got mine today as well. Pretty good results I think. This was a 6 month scan and the bottom line was that there was no progression. And in fact the new tumor I had growing in my shoulder is no longer visible.

All the tumors in my liver and lungs are still there, but they are all 1cm diameter or smaller. And the one tumor that was zapped with SRS and expanded (consistent with inflammation from the radiation and scar tissue) has now begin to shrink (consistent with a decrease in inflammation).

I would love to be NED, but I will take no progression!

- Paul

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RGal's picture
Replies 11
Last reply 7/23/2015 - 4:08am

I have been checking just about every day for the past 16 mts now.  This board and all who visit have been such a source of comfort and information during one of the most difficult times of my life.  Sadly, my father passed away last week.  He was at peace with it all so my family and I were as well, or try to be depending on the moement.  I would like to thank each and every one of you for your wisdom, strength, and encouragement.  

My father was unfortunately diagnosed late, (hemorrhoid??) with mucosal melanoma so I knew the odds were against him however, I knew we gave it the best fight, in part, because of all of the vital, up to date information found on this blog.  Honestly, this was really the one place I knew I could find the most recent information, statistics and personal stories.  So much of what is found online is years old with grim statistics.  There is basically no information on mucosal melanoma to make it worse. 

I wish you all luck in fighting this horrendous disease and promise to do all I can to raise money and help to fight in honor of my father and all of you.

Best of luck

Lorraine Palumbo

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Mom2Addy's picture
Replies 3
Last reply 7/23/2015 - 4:09am
Replies by: stars, Mom2Addy, Bubbles

After SRS,surgical resection (twice) and four rounds of IPI, my husband begins Opdivo tomorrow.  Full body PET at 6:30 AM, labs at 12:00, see Doc at 12:30 for results, then treatment. Long day! Interested in hearing about side effects and any advice to keep them at bay. Our oncologist (top Melanoma guy in our area) said absolutely no steroids. Thank you and continued prayers for all. 

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