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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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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sweatergirl's picture
Replies 4
Last reply 11/1/2015 - 12:48pm

My hubby, age 55 with fair skin and numerous moles, went to the doctor for an unrelated matter when she noticed a mole the size of a pencil eraser on his left abdomen.  It appeared black; no uneven edges and not raised.  She used her special light on it and, because she found it to have "numerous colors," she referred him to a dermatologist on an emergent basis.

Two days later he was at the dermo's office and the dermo found another worrisome mole, on his right shoulder.  Both moles were biopsied.  From the path report, it appears that they were shave biopsies.

The diagnosis are as follows:

a: Skin, left abdomen, biopsy:

Compound melanocytic nevus, Clark's/dysplastic type, moderate to severely atypical, focally present at the peripheral margin, see comment.

b: Skin, right shoulder, biopsy:

Irritated compound melanocytic nevus, congenital pattern, see comment.


A.  Definite full transformation into melanoma is not interpreted.  Nonetheless, there is moderate to severe architectural disorder and cytological atypia and consequentely full removal of any residual lesion is recommended. (scheduled for 11/4/15).

B.  There is slight architectural disorder but no significant cytological atypia and the overall findingas appear benign.

Specimen Submitted:

A:  Left Abdomen: Received in farmalin labeled with the pt's name and "left abdomen" is a light tan skin shave with a central pigmentation.  The skin measures  0.8 cm x .7 cm.  The pigmented region is 0.5 x 0.4 cm located less than than 0.1 cm from the nearest resection margin.  The deep aspect is granular light tan.  The resection margins are inked blue.  The specimen is sectioned and entirely submitted in A1.

B.  N/A since it appears benign.

Unknown as to how long this particular mole was there, as hubby has so many.  From my research (thank you so much for this website--what a GIFT!), this was likely caught early enough so as to NOT be cancerous, but.........

My question to the group is how likely is this to be melanoma?  Hubby's parents have both had basal cell carcinoma and squamous cell carcinoma, but no family hx of melanoma.

It would have been better if the dermo had initially done a punch biopsy v. shave, correct?  When she does the removal with two layers of sutures (as her medical assistant described), will it likely be the MOHS surgery or an excisional (like a lumpectomy, for a lack of better terms)?

We will do full body photographs of moles, after this treatment, for comparisons.

Thank you so much for reading my post and the feedback.


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Hi All, 

In 3rd week of taf/mek combo. Having low fever (99-100), chills, dizzy and fatigue. Think I may call onc to report to see if there is something to ease the fever/chills occuring during day and night. Has been consistent the past 3 days/nights.  Currently can only treat with Tylenol because of meds I take for auto immune disease.

Trying to stay optimistic telling self meds are working which is why I'm having side effects! I'm worried he will lower dose which I dont want to do-I can manage, if I have to. Does that make sense?

Thanks for any input!

Do not fear tomorrow, God is already there.

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Christine.P's picture
Replies 6
Last reply 10/29/2015 - 11:39pm

I start my first dose of the combo on Monday and was just wondering how long the treatment takes. I've seen one person say the treatment is 2-1/2 hours long and wondered if that varies by person and dose or if that's pretty standard.

Also - are all four doses of the combo the same duration? I feel lucky that I get to try this new combo, but am also getting nervous. I know side effects vary quite a bit, but the waiting to see what will happen to ME is a little nerve-wracking. I try not to think about it most of the time, but it does creep into my thoughts. 

Thanks to all of you on this forum. I appreciate the honesty, candor, and support shown to everyone who posts. 

Christine P. 

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JimsWife's picture
Replies 33
Last reply 10/29/2015 - 9:29pm

My husband passed away on September 18th, just 9 months after his diagnosis. A brief history: primary mole diagnosed melanoma in situ in 2007, became symptomatic and discovered on December 23, 2014 that it had metastized to his brain, lungs, and spine. He did WBR, SRS, Temodar, and the tafinlar/mekinist combo.

He entered the hospital on Tuesday September 8th (1 day after our 2 year anniversary) and came home to pass away 10 days later. When he entered the hospital, he displayed stroke like symptoms, which was actually a focal seziure and continued to have massive seziures that left him immobile and unable to speak by the time he got home. We always knew the combo would stop working at some point and when it did, we had plans to do more radiation and Keytruda. However, the cancer progressed too fast once we realized and the seziures were too frequent. We didn't have time to react.

He leaves behind his 3 month old daughter and myself (along with 4 brothers and his parents). The world truly lost a great man. He was 35.

I visited these boards regularly and am thankful for all of you who continue to fight the good fight. Keep fighting. I will pray that all of you that are plagued by this awful beast of a disease can one day live melanoma free.

With love,


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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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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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Anonymous's picture
Replies 4
Last reply 10/29/2015 - 11:29am

Has anyone heard from Janner lately?

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braunerk's picture
Replies 10
Last reply 10/29/2015 - 10:48am

FDA approved Imlygic (t-Vec) today

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Anonymous's picture
Replies 10
Last reply 10/29/2015 - 9:17am
Replies by: blessd4x, Ed Williams, casagrayson, 273c, jbronicki, kylez, Anonymous

My husband recently diagnosed in August, he had an 8mm mass removed from his arm, informed that it was a bad mass, stage IV, however it is atypical in that thats the only place it was.  It did not spread to the lymph nodes.  Our next step is immunotherapy in 2 weeks and they want to do an MRI on his brain even though we've already done all the PET MRI CAT scans.  I dont know how to feel about stage 4 with this?  What are the survival rates then if it was only in one place?  Will it show up again since it was so bad?  


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Daisyduke's picture
Replies 9
Last reply 10/29/2015 - 2:18am



I just got back from my appointment and what t thought was a Stage III B prognosis turns out is Stage IV and the Doctor wants me to start either Keytruda or Opdivo,  Which one do most people use and how bad are the side effects?


What have you found to be the success rate when you go back for further scans?  The Doctor seems to feel that this is the best option for me and probably the only choice for right now.  I guess once you are on this drug it is for life is what I have heard.


What is the best and easiest way to get these drugs administered that you have found, going in through an IV in you arm, a PICC line or a PORT?  I am still trying to cope with this new information so I can move on and make the right choice.


I know that with this support group out there I will be able to cope and make it.


Thanks everyone.

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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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AshleyS's picture
Replies 9
Last reply 10/29/2015 - 1:48am

Hey folks,

Has anyone on Opdivo/Keytruda found any links between diet how you're feeling? I'm having one of my "bad days" today - lots of cramping and diarrhea. I've been trying to make a connection between my diet and these "bad days" but I haven't found a link. I also don't see anything that I'm doing differently on the good/great days. I haven't cut out any foods and eat a variety of fruits, vegetables, meats, and grains. I don't drink alcohol and occasionally eat sweets. I go for walks daily, work out with a trainer twice a week, and constantly play with/chase my two little ones. I get a fair amount of rest, but have a baby who wakes frequently at night. I know that treatment may not alway be easy, but if others have found ways to make it easier, please share!

FYI, I'm not looking for a way to cure my melanoma with diet. 


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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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Angsta39's picture
Replies 7
Last reply 10/28/2015 - 1:14pm

I was diagnosed with Stage IIIB after two surgeries to remove the intial cancer from my leg, a sentinal lymph node biopsy, and having the rest of my lymph nodes removed from my right groin. When I went to see my Medical Oncologist, she offered me three treatments. Interferon, Peg, or Biochemo or just to watch and wait. She explained that none of the treatments she offered would change the 60% chance of the mel coming back within 5 years, so I decided to just watch and wait instead of dealing with the side effects she told me I may have from the treatments. I have tried to find data on each one of these treatments and if they really work or if I'm better off keeping to the watch and wait. I gave read threads where people have been NED for years from doing these treatments so it makes me question myself and my doctor. Could anyone who has been through these treatments please share your story with me so that I can be more educated on all of this. Thank you in advance for your help.  

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