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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gregor913's picture
Replies 5
Last reply 11/4/2015 - 12:04am

Hi just received my pathology. Questions on a few.

Tumor infiltrating lycocytes brisk, present

Lymphatic invasion not identified

Perineul invasion not identified

Can somebody explain the importance to me and if they would affect a slnb. What does not identified mean?

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Momofjake's picture
Replies 8
Last reply 11/6/2015 - 10:00am

Hi there friends,

i have missed you but it's always good for us to take a little cancer break if we are so lucky to be able to! If you remember my 18yr old son Jake is stage 4. He has mets everywhere but brain. He has had 7 treatments and has scans again Nov 19. His last scans showed major improvement in bones, spine, skin, femurs etc. stable and less active in lungs and liver. One new tumor in his chest. Overall we were happy! Jake looks really good! I really thought I would lose him in June....but keytruda....a miracle right?!? He only has fatigue and is back at life mostly. His treatment was TH and I just got labs posted online. His LDH tumor marker was up. His highest while growing rumors like crazy was 180. It's been way down the last few months but popped back up to 161 this week. Should I care? I haven't told him. He is 18. He can look if he wants. But really he just wants to live his life. Never ever do we talk cancer!! 

Jake did just start a charitable foundation. It's called "Jake's Hope". He is going to give mini wishes to cancer kids! All his deal. He is doing a few other things too. Finding his voice just a little. Happy mom:) Glad to hear some of my old favorites in hear still okay! Prayers, love and lots of pure toughness shared here!! Thank you! And all you new peeps, welcome! This will be a really important place in your life. 

Kerri--mom of Jake

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DennysGirl's picture
Replies 11
Last reply 11/5/2015 - 2:21am

Soo, my hubby, (stage 4, mets in brain, spine, lungs, pelvis, ribs) was admitted to the hospital on Friday, Oct 23 for dehydration and malnutrition due to vomiting. After new act scan they found the tumor in his R lung had grown into his bronchi and was obstructing his breathing. He was then admitted into University of Wisconsin Health on Tuesday, Oct 27th. They did surgery cutting the cancer out of the bronchi and putting in a stent.  His breathing has gone from needing 6lpm to only 2lpm. We had an MRI and PET scan on Oct 14th at our local hospital.  The MRI had shown that the one brain met that he was diagnosed with in May had stayed the same....Fast forward to last week, here at UW, when they were filling him up with fluids..he started swelling up on the top half of his body. They did a new MRI on Oct 30th on his brain and chest and found a tumor in his chest is obstructing his Superior Vena Cava causing the swelling. As for the brain MRI they found that since his last one on the 14th he has had 7 more small tumors pop up and the original one that was a size of a pea on Oct 14 is now the sign of a ping pong ball. So they started radiation right away on his brain and on his chest. He had been doing really bad for the past few weeks and on Saturday the oncologist (melanoma specialist) here at UW told us that if things didn't improve by Tuesday that we should discuss hospice. Sunday there was improvement and today was huge improvement but the social worker came in and said the dr is still suggesting hospice. He is being discharged tomorrow. 

My husband is only 47 and other then the cancer a very healthy man, he has no other health issues.  I am torn---I feel like if he enters hospice then we are just giving up. If we fight and continue with chemo and radiation he may be able to extend his life a couple years possibly. 

Have any of you here ever had a dr suggest hospice... What was your decision....why? 

Renee~loving wife fighting for her hubby! 

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Christine.P's picture
Replies 8
Last reply 11/4/2015 - 12:55pm

I was diagnosed as stage IV just a week after the FDA approved the new Opdivo/Yervoy combination treatment. My insurance company - Bue Cross Blue Shield has denied the treatment. I was supposed to start treatment today and didn't find out about the denial until I was sitting in the waiting room. (Don't even get me started on how angry I was that they didn't call me to tel me before I got there. Have they no sense of the emotional and mental preparation it takes to get to the first treatment? And then they tell me to go home? I let them know this wasn't cool.)

Later my doctor called me and said it could help if I called the insurnce company too. So, I called them myself today to ask wny and first they said it was because I don't meet the critera and I said, "I am stage IV and have had no previous drug treatments - how can I not meet the criteria?" 

Then he said it was because the drugs were still experimental. I told him that wasn't true and that they had received the FDA report from my doctor to prove it. He told me we had to file an appeal and I told him my doctor had already done that. I then called my doctor back to let him know what BCBS said and he was also angry and said they would call again today. 

Because my appeal was marked expedited, I am supposed to hear in 72 hours if I win my appeal. If I don't, I will call again and demand to speak to someone higher up the chain. 

Has anyone fought Blue Cross and won? If so, how? 

Thanks, again, for your support and experience.


Christine P. 

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5dives's picture
Replies 35
Last reply 11/19/2015 - 9:52am

Hello all, 

I am currently stage 3b (T1bN1aM0) and have been recurrence free since July 2014. Hooray! 

I see my oncologist at Loyola Medical Center in Chicago and have an oncologist at Memorial Sloan Kettering in New York. 

Both of those doctors advised me against having a complete lymph node dissection because my one node was *only* micro positive for melanoma and both of them felt having lymph nodes is more important for long-term health than having them out when the risk of spread is low. This decision made me nervous, but I decided to go along with it, and I'm still solid about it. 

I did not have interferon because (again) both doctors felt that the side effect profile of interferon and the low probability that it increases survival made it not a good choice for me. 

Now...enter Yervoy. 

I have been NED for 16 months with no treatment beyond WLE / SLNB. I am seeing a dermatologist every 3 months and the oncologist every 4 months. 

Can you all tell me how you're going about deciding whether or not to do adjuvant Yervoy? 

I'd really appreciate hearing your thought process on this big decision. 



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gregor913's picture
Replies 17
Last reply 11/2/2015 - 8:48pm

I was just recently diagnosed with malignant melanoma on Oct 29, 2015 and I am 34 years old male. I originally went in to have a mole looked at because after taking a shower I dried off and my wife noticed the mole was bleeding. I made a appointment a few weeks later and told the doctor about it. He examined me and said its probaly nothing but we will remove it anyway because your light skinned with blue eyes.

A week later the doctor called and told me to come in the office. Thats when he dropped the bombshell and I felt so many emotions and feelings going through my head I cried. He said that the pathology report was abnormal and melanoma cells were found in the tumor. He said it was ulcerated and had a breslow thickness of 1.7mm. He also said the margins were negative but I would probaly have to do a wider encision and other tests to see if it has spread to my lymph nodes. Once I heard that It really freaked me out.

He classified me as moderate melanoma and referred me to a oncologist but said he spoke to the oncologist and hes confident he can treat it. Ive been doing alot of reading and I would classify myself as a 2a right now depending the results of the snlb. Im just really scared because of the ulcerated part. Has there ever been a patient who was ulcerated and it did not spread? Is 1.7 a very deep thickness? Does negative margins effect anything? 

I have not had any side effects and my wife has been doing daily feelings of my armpit, neck, and collarbone. I have not felt any hard lymph nodes that would show my body is fighting something.


Thanks for taking the time to read this. My first appointment is Monday November 2.




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Jubes's picture
Replies 5
Last reply 11/1/2015 - 3:08pm
Replies by: Jubes, Anonymous, Bubbles

Hi all

Just a quick update on my poly myalgia type side effects that caused me to stop Pembro in August. The rheumatologist and oncologist have decided to treat the symptoms as much as possible before giving me the big guns ( infliximab which reverses the effects of Pembro, though so far from a small sample of ppl treated with that for life threatening colitis it has not affected the benefits of the checkpoint inhibitors) 

So i am continuing on 25 mg prednisone every  day and have been taking 200 mg slow release ketoprofen every day along with regular Panadol  osteo. I am still very stiff and sore but the pain had gone from a 10, where I was virtually paralysed in the mornings for up to three hours, to about a 6-7, where I can get up and enjoy my life but a long way from working, yoga or playing golf!

the next step will be this week now they have checked my eyes and other bloods, they will put me on plaquenil and try to gradually wean me off the steroids that I have been on since May. 

My next pet is in December so I think they want to try all those things and make sure disease has not progressed before they risk infliximab as it was still 3 cm in my lungs stable in August from January 

hope this helps if anyone has similar problems


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chrisholder's picture
Replies 2
Last reply 11/1/2015 - 11:11pm
Replies by: kylez, Gene_S

Hello, All,

I am Chris, a 68 year old married male musician living in western upstate NY & brand new to this site.  Diagnosed with mucosal melanoma in the maxillary sinus six months ago in May and quickly joined an expanded access c. trial at Dana Farber in Boston with the Ipi/Nivo dual infusion therapy.  Severe side effects (esp. thyroiditis and hepatitis) forced me out after only two infusions requiring me to spend the rest of the summer recovering from the s. effects.  Began a new course of Pembrolizumab (Keytruda) in Sept and hope this will show some positive results eventually.  Would be interested to hear stories from other m. melanoma patients about their treatments, progress and outlook.  Thanks in advance for welcoming me in here!   

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My daughter has had Yervoy already and now has had 7 infusions of Keytruda. The Keytruda has kept it from spreading, but the tumor is not shrinking. She is BRAF positive but is being allowed to do this treatment. Has anybody had success with tumor shrinkage with this combo? How were the side effects?

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Christine.P's picture
Replies 8
Last reply 11/2/2015 - 7:35pm

Many people have posted here about the rash and itching that comes from the Opdivo/Yervoy treatment. Any advice on brands of lotions and soap/body wash that can help?  I start my treatment Monday and would like to have a few remedies in place in case I need something to tide me over until the docs can get me a prescription, etc. 

Any other tips on side effect relief will be greatly appreciated as well...

Thank you!


Christine P. 

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JoshF's picture
Replies 20
Last reply 11/2/2015 - 10:03pm

Don't have path in front of me but got call earlier from derm. Approx. a 4mm well circuscribed nodlue of melanoma. Stained positive for Melan-A, negative for HMB-45....doesn't appear to be a lymphnode. Lymphocytes present....whatever that means. But basiclly said it's a sub-q metastatic leison. He sent path to oncologist. I'm seeing  oncologist tomorrow....don't think I'll be doing scan tomorrow but I know the drill....just hoping it's just a dermal leison and hasn't spread anywhere else since I had last PET 3 months ago....

This shit is unreal...



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

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Anonymous's picture
Replies 4
Last reply 10/29/2015 - 3:55pm
Replies by: Jubes, Anonymous, blessd4x, Bubbles

I stated before in a past blog that my husband had a very bad mass (not primary location Im told) removed from his arm in August.  So bad, in fact, they had to classify as a stage IV.  It didnt, however, spread to his lymph nodes or show in any scans anywhere else.  It does not follow the standard definition of a IV, but Im also told this happens in about 3% of cases like his. 

They did a brain scan MRI last week, not sure the results until next week.  He's had a cough for over a month.  He doesnt smoke.  He's very weak, tired and sick.  In the 10 years Ive known him Ive only seen him sick one time years ago.  Now hes been sick with fevers, chills, lethargic and this cough.  Says he feels like something is in his lungs.

Now they want him to start immunotherapy with Opdivo.  Why?  Why are they telling us they got this huge nasty mass, margins clear, calling him a Stage IV, saying things look good, but ramping up treatments, additional MRI's?  When I read on this Opdivo, it seems for late stage, nothing else will work treatment. 

I assume they thing he has cells floating around and they want to be proactive and kill it before it lands anywhere?  Im so confused.  Everyday he's weaker.  God, whats happening and Im feeling like we are not getting the whole truth on this.





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Hi Guys, just wanted to get this out there because I had a lot of trouble locating this information. I am currently receiving Opdivo and had severe diarrhea and stomach issues with it. My oncologist put me on steriods but everytime I came off the symptoms returned, until a nurse friend of mine suggested trying Immodium! It worked!!!! I take two immodium bascially every 24 hours, a third if needed, and I'm great! I can eat and drink anything I want and my oncologist is A-OKAY with this! 

Some background on me: I am Stage 3B, first diagnosed in Oct. 2014 with melanoma in my parotid gland (neck behind ear), I had the gland removed along with a neck dissection to remove all lymph nodes which came back clean. We did 25 rounds of radiation just to be sure. Thought we were in the clear when in April of 2015 I woke up with facial paralysis on the right side. ER doctors thought it was just Bells Palsy but because of my history did a CT just to be sure. Low and behold the melanoma had spread to my brain and was bleeding. A crainitomy later I was feeling great, slowly my smile came back and all was right with the world. I did one round of gamma knife radiation and flew off to London and Spain to celebrate! Once in Europe I became serisouly ill and couldn't eat or drink anything. I quickly lost weight and was getting sick all the time. I came back to the USA and underwent both a upper and lower endoscopy. They located a polyp and removed it and sent me home. After an uncomfortable 24 hours I went back to the ER where they found A LOT of air trapped in my chest and knew the perforated my bowel. With the fear of a colonostomy bag in my future a wonderful surgeon was able to repair my perforated bowel but also found several large tumors requiring him to remove 20 and 30 cm of my small and large instestines. I've since healed and had 10 treatments of Opdivo, with the only side effect being the diarrhea. At first it was 6,7,8,9,10 times a day, anytime I came off steriods. On the random advice of my friend in nursing school with no Oncolgy experience I took immodium and BAM! it worked! I really hope this helps some other people out there on Opdivo or Yervoy. From what my oncologist has said the diarrhea can be even worse on Yervoy. But perhaps the immodium can help just the same for any folks on that medication. Also one last piece of advice I prefer the CVS or Walmart brand gel caps, they are 1. cheaper (wooohooo!) and 2. the name brand dissolves in your mouth immediatly and it chokes you going down leaving a horrible taste in your mouth, so just a quick FYI there! Hope this helps someone else out there! 

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Tim--MRF's picture
Replies 1
Last reply 10/29/2015 - 7:57pm
Replies by: kylez

Fair warning--this will likely be a long post!

In the past three weeks or so the FDA has issued three approvals relevant to melanoma. This is great news, of course, but it does raise a number of questions. Iam not a doctor, but have some thoughts on these changes.

Ipi/Nivo:  First was approval of the combination of ipi plus nivo (also known as Yervoy and Opdivo) for Stage IV patients. Ipi was approved as monotherapy in 2011, and nivo was approved last year. Results of the combination were all the buzz at the big cancer meeting, ASCO, this past June. Response rates were over 50%--numbers unheard of in melanoma. But side effects were a major issue, with more than half of patients experiencing problems that led to ending or postponing therapy. Even patients who did not take the full course, though, seemed to have good response rates. A lot remains to be learned about these drugs, and how to make the combination as successful as possible. Still, this is the approach that seems to be the first option for many oncologists now.

T-Vec: This was approved earlier this week. It is a modified Herpes Simplex 1 Virus (HSV-1). HSV-1 is the virus that causes cold sores (and not the virus that is a sexually transmitted disease!). A virus is miniscule in relation to a human cell. This virus only has a few genes. One of those genes blocks the ability of normal human cells to fight off viral infection. In T-Vec, scientists have removed that gene so the virus can no longer infect normal cells. Cancer cells don't have that ability, so the virus can infect them. The virus sticks on the cell surface, opens a hole in the cell membrane, and injects its own genetic material into the cell. That material takes over the cell division functions of the cell and causes it to create more viruses. Ultimately so many viruses are created they burst open the cell, then go out to infect other cells. So, T-Vec preferentially kills cancer cells. But it does more. When the cells burst open the remnants of the cell create a debris field of antigens that sensitizes the immune system to other tumor cells. But T-Vec has one more trick up its sleeve. Remember the deleted gene? Scientists replaced that gene with a different gene that produces GM-CSF, a compound that stimulates the immune system. So T-Vec kills cancer cells, trains the immune system to find other cancer cells, and stimulates the immune system. Sounds great, but the results are somewhat less impressive. T-Vec must be injected in the lesion, and even then the response is mixed. It seems to work best in people with injectable lesions and low tumor burden. Having said that, it is likely to be a major player in the future. If you combine T-Vec with another immunotherapy the results look much better. This could be ipi, one of the anti-PD1 drugs, or even IL-2. Also, it may be possible to inject lesions inside the body (in the liver for example) using ultrasound or some other technology to guide the needle.

Ipi Adjuvant: Finally, today's announcement that the FDA approved ipi for use as adjuvant therapy. The data are clear that ipi reduces the likelihood of recurrence. Some problems exist with this study, though. First, the study did not compare ipi against interferon. This is because some of the sites were in Europe, where Interferon is almost never used. A new study is underway as a head to head of ipi vs. Interferon and that data will be important. Second, the study had a lot of side effects, and even some deaths, among the study group. Finally, (and this may be related to the above) the study was done at a much higher dosage of ipi than is now used for Stage IV treatment. Current approved therapy for Stage IV is at 3 mg per kg of body weight. This adjuvant study was done at 10 mg per kg of body weight. At the time the study was designed some researchers felt the higher dosage would give better results. Further work showed that the added benefit did not outweigh the added severity of side effects. The higher dose for adjuvant work has two issues. First, it may well be that using ipi in the adjuvant setting at the 3 mg/kg dose will result in fewer side effects. Second, because of government regulations, the company cannot discount the price for the higher dosage. They must maintain the same price structure on a $/mg basis regardless of the dosing. This will result in a price per infusion that is more than three times the cost of ipi used for Stage IV patients. The company knows this is not acceptable and so have initiated a novel program. Stage III patients who decide to take ipi to try to lower their risk of recurrence are encouraged to enroll in a special program. Once enrolled, all of their drug is completely free, regardless of financial situation or insurance coverage.  This is a bold step for the company to take, and hopefully everyone will get the information about this program before experiencing significant costs. The program only applies, though, to the approved dosage of 10 mgs/kg.

OK, that was a lot of information. I hope it helps clarify matters a bit. 





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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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