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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sweetaugust's picture
Replies 3
Last reply 10/10/2014 - 6:17pm
Replies by: Bubbles, BrianP

Hi guys,

I had treatment on Wednesday and said I would give an update I went into it wondering if anything was going to change for my treatment plan now that Pembro/Keytruda/MK-3475 has been approved by the FDA.  And no, no change for me.  I am still on Pembro for good...with no end date.  And as of now they have no plans to change my dosage amount or 3 week intervals of infusion. 

My question has always been how much is too much and how long is too long to be on the drug.  I've always had it in my mind that at the 2 year mark (which will be in a couple weeks) I would come off the drug and see how I did without it.  My doctors said that they don't really have enough data on patients coming off of Pembro, as most are still on it.  They did mention that a few of the patients that have come off of the Bristol Myers PD1 treatment had their cancer grow back, but then when those patients went back on the drug, the cancer faded away again.  So they are seeing that staying on the PD1 drugs is a good thing.

So I guess the best thing for me to do is to just keep at it...and appreciate that I still feel great everyday. 

How about any others out there on the PD1's.  How long are you scheduled to be on it for?  Are any of you scheduled to come off of it or are you all no-end-date like me?

Thank you and all my best, Laurie

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Ginger8888's picture
Replies 5
Last reply 10/10/2014 - 5:48pm
Replies by: Ginger8888, DZnDef, Anonymous

Although this is not the pure oil that is really benefiting people, hopefully this will work, hoping one day they will approve the pure oil, the cannaboids in it's ingredients are what is "curing" some cancers..

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Anonymous's picture
Replies 13
Last reply 10/10/2014 - 2:14pm

My son had 4 infusions of ipilimulab every 3 weeks through a trial -canada. First CT and PET after the treatment phase showed lymph nodes in his neck were again compromised. His initial mole was on his scalp. He had SNE and a second surgery before starting the trial to excise more lymph nodes.

He met today with the surgeon and he said that The last excision biopsy showed that one lymph node had melanoma. He has an appointment with his oncologist at Princess Margaret Cancer Centre next week and radiation will be discussed together with how to continue. He is BRAf positive. He is 27 old and overall very healthy. He did not experience too many side effects from IPI but fatigue + night sweats ended.

many wonders in my mind: is he having a slow rsponse to IPI? Should he continue with the maintanance phase of 4 infusions every 12 weeks? We are very hesitant about permanente side effects of radiation? Is having radiation an impediment for having more treatment or trial options? 

Thank you for your input in advance


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adriana cooper's picture
Replies 2
Last reply 10/10/2014 - 8:46am
Replies by: ecc26, DZnDef

Not the news I wanted but not really surprised. So far I still have my tumors in my lungs with some growth. Not sure right now if its true growth or if its swelling from the IPI. My lymph nodes in my chest are now involved they have not been before. I will be getting a new scan in two months to recheck my tumor growth. I have nicknamed the lovely tumor on my arm that will not be easily killed off Frankenstein, he has been removed came back then radiated and has come back. I will be taking some time off from any treatment to spend quality time with my family and just for a little while try to forget what is waiting. Will be doing some research on what is the best treatment option for me. I am BRAF positive. Still keeping a positive outlook. With my wonderful boyfriend by my side I will stay positive. Good luck to all


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DMU's picture
Replies 7
Last reply 10/10/2014 - 5:41am
Replies by: DMU, Janner, Ginger8888, Anonymous

Hi! I just had a mole on my back removed and had to wait a week for the biopsy to come back. Nurse called to tell me I had Clark level 2 melanoma, and I had to see a plastic surgeon. When I ask what it meant she told me they did not understand the biopsy report.  Scary.



since I already had 3 years ago basal cell carcinoma on my face with reconstruction surgery, I knew it wasn't good.

Now I go to the plastic surgeon on Oct.,13, and have no idea what to expect. My Family is freaking out, and I'm just trying to hold things together. I'm happy I came across the melanoma site, it has been very helpful. I hope everyone has a great daty. Thanks.   :)

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Intralesional injections show promise for cutaneous melanoma   7 Oct 2014

7 Oct 2014

by ecancer reporter Janet Fricker

The poster session ‘Melanoma and other skin tumours’, held at ESMO 2014 in Madrid, highlighted the emerging field of intralesional injections for cutaneous melanoma leading to tumour regression not only in the injected lesions, but also in ‘bystander’ lesions suggesting that the strategy is augmenting immune response.

Cutaneous melanoma represents a persistent morbidity, including disfigurement accompanied by pain, ulceration, bleeding and infection.

Despite locoregional therapies, such as surgery and radiation, a significant percentage of patients have locally advanced disease at high risk for recurrence, progression and metastasis.

Now a number of new approaches are exploring intralesional injections of oncolytic viral immunotherapy and dyes to eliminate patient symptoms and prevent progression to stage 4 disease.

First, poster 1102P reported on an extension of the phase 3 OPTiM study in patients with unresected Stage IIIB-IV melanoma treated with Talimogene laherparepvec (T-VEC), a herpes simplex virus type 1-derived investigational oncolytic immunotherapy¹.

Earlier, at ASCO 2014 the investigators had shown that median overall survival was 23.3 months for the T-VEC arm compared to 18.9 months in the granulocyte macrophage colony-stimulating factor (GM-CSF) arm (HR 0.79, P=0.051).

Extension treatment was made available to patients who did not have clinically relevant progressive disease or who had experienced a complete response and then developed a new lesion within 12 months from the end of last treatment.

Altogether 31patients were enrolled into the extension trial, including three from the GM-CSF arm and 28 from the T-VEC arm who continued on randomised treatment for up to 12 months.

Results showed the best overall responses improved in seven patients in the T-VEC arm, with five patients who had a partial response in the main trial and two patients who had stable disease in the main trial achieving complete responses.

The adverse events reported were grade 1 or 2 in severity and did not lead to discontinuation.

“We were able to show that in some patients whose disease had returned we could get them back into remission by re challenging them with the agent. We also showed that T-VEC was very tolerable with no additional toxicity burdens for reinjection,” explained Kevin Harrington, study author from the Institute of Cancer Research, London.

Next poster 1103P, which received a best poster award, presented information on the CALM study exploring intralesional injections with a different virus, this time Coxsackievirus (CVA) A21, a naturally occurring ‘common cold’ intracellular adhesion molecules1 (ICAM1) targeted RNA virus.

In animal models, it has been shown that CVA21 lysed tumour cells induce a secondary systemic host-generated anti-tumour immune response.

Results of the phase 2 study showed that 22 out of 57 of stage IIIC and IV melanoma patients (38.6%) met the primary endpoint of immune-related progression free survival (irPFS) at six months.

The secondary endpoint of objective response rate (complete response partial response, according to irRECIST 1.1) was 28.1%.

Finally, poster 1120P provided the latest analysis of a phase 2 study evaluating intralesional injection of PV-10, a 10% solution of the dye Rose Bengal, in 80 patients with stage IIIB-IV melanoma².

The rationale for PV-10 is that the agent has a local chemo ablative effect where it enters lysosomes causing local necrosis, and then in some patients a systemic effect believed to be immunologically mediated.

Following injection previous studies have demonstrated increased CD8 , CD4 , CD3 and NKT in peripheral blood.

For the subgroup of 28 patients who had all their lesions injected with PV-10 (i.e. had no uninjected lesions), the poster showed the overall response rate was 71% (CI 51-87%) with 50% achieving a complete response (CI 31-69%).

The abstract furthermore showed marked differences in progression free survival according to number of lesions injected.

The 28 patients who had all their lesions injected showed a progression free survival of 9.8 months compared to six months for the seven patients who had a median of five untreated lesions.

“The progression free survival of 9.8 months compares favourably with historical progression free survivals of less than 2.5 months for DTIC/TMZ, “said Sanjiv Agarwala, the first author from St. Luke’s Hospital and Health Network, Bethlehem, Pennsylvania.

Such data he added, suggests PV-10 will deliver significant progression free survival effects in the phase 3 study, due to start Q4 2014.

“The abstract also shows us that we’re likely to get the highest responses when all lesions are injected.”

Additional data showed that for the 232 lesions that achieved a complete response 121 required a single injection, 84 required two injections, 22 required three injections and five required four injections.

“The few injections needed in this study bode well for patient compliance with PV-10-treatment,” said Eric Wachter, Chief Technology Officer of Provectus.

I'm me, not a statistic. Praying to not be one for years yet.

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ecc26's picture
Replies 8
Last reply 10/9/2014 - 6:54pm

or, at least I'll try to be quick- I tend to be rather verbose...

On Monday I travelled to the Roswell Park Cancer Institute in Buffalo, NY for a recheck MRI and surgical follow up. It's been about 3 weeks since my craniotomy for a 3.5 cm metastasis in my right frontal lobe. The original plan when I was discharged was to heal for 3 weeks then come back for gamma knife on a couple of other spots they had seen on the pre-op MRI that were not surgically accessable. Then the pathology came back on the one they removed- all of it was radiation necrosis, no live cells at all. That made me happy- I'm always glad to hear that one of my tumors is dead, but it also meant that they were now questioning whether I really needed another (would be my third) gamma knife, or whether the PD-1 might be getting in there and doing some work.

Under the impression they were going to hold off on the radiation, I was rather surprised when I recieved a phone call saying I had been scheduled for gamma knife. After talking with them, then with the surgeon it was agreed that instead of the radiation I would get an MRI to take a look at things and we'd discuss what things looked like and what the best path would be. 

The MRI happened at about 7:30 am, and the follow up/consult was at 9 am. I am so very very happy to report that the end result of that was that the spots they were concerned about appear less distinct than they did on the pre/post-op MRI so there will be no radiation (for now). Instead we'll re-scan in 6 weeks and see how things look. I'm good with that. I should also note that I was able to resume the now FDA approved PD-1 locally last Friday, so I'm really not even off schedule with that. 

Regarding the surgical site- the cavity is still a bit large, but it is reducing in size and the incision on my scalp looks quite good so everyone is happy.

Best of luck to everyone out there who's fighting their own battles- keep fighting, it's worth it!


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MattF's picture
Replies 4
Last reply 10/9/2014 - 4:26pm

Quick Update

Stage IV in Dec 2013

BRAF Combo MEK and TAF ...Dec 2013 to Jun 2014

Yervoy completed a couple weeks ago.


Latest PET/CT showed some of the tumors have shrunk, some grown and some stable....there are however a few new items that showed up.

Paperwork and Authorization went in today for Keytruda. Which Doctor hopes starts within the next 14 days.

Just as backround....I have a number of tumors on my thighs, pelis etc and have had radiation there.....also 7 Mets in brain and have had SSR to brain in Aug 2014.  I am borderline Anemic.....I also have swelling in feet and ankles over the last 4 weeks...

Thoughts on the plan....


I mean Keytruda is pretty much next right?



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Carole K's picture
Replies 2
Last reply 10/9/2014 - 1:57pm
Replies by: Carole K, DZnDef

HI Everyone

     I don't know how it happened but my post below posted as ANONYMOUS.  NOt sure how I did that.My aplogies.  

     I am interested to see how many of you use the chat room and if you don't , would you mind sharing why you don't.  I found the chat room a wonderful plaece when i was here  The best way to do chat is to use it continually.  I have been on facebook for five months and yes it'sa wonderful place to go  adn there are several groups there.  The thing I LOVE ABOUT MPIP  is the community spirit we had.  It's stmall enough that you can get to know each others story.  Chat just takes thisngs to another level   You really get to know each other and honestly at times it becomes a place to just vent and yes  LAUGH.  It was a formum for many to come to when they were down  There were several conversations going at once  It resulted in many of us meeting several times in Asheville, Dallas, Michigan and Florida.  IT WAS SUPPORT LIKE NO OTHER.  The one thing about chat is as a group you have to respect when someone new comes to chat and welcoe them. What i usually do is I stop when someone new signs in  I welcome them and ask if they have any questions.  Let them share for a bit and explain what goes on in chat.  You may be having a conversation with two or three people and someone else may just be readng. It's different all the time  Sometimes the HUMOR Iis vry refreshing  I hope all of you try it and just keep going back  I promise you will get to love it  

That being said?  Is anyone up for a chat session?  I will post and e mail to several OLD TIME SURVIVORS TO MEET US HRE  

Just post and let me know .

Sending everyoe big hugs and positive thoughts.. Hang tough !!!! WE CAN DO THIS.. 


Love and Light 

Carole K

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LisaMH's picture
Replies 8
Last reply 10/9/2014 - 9:43am
Replies by: DMU, FormerCaregiver, Anonymous, DonW, slpinion, Carol Taylor

Hi all.  Newbie here.  I got the call last week that my biopsy showed melanoma.  The details of my pathology report:

0.6 mm depth


Clark's Level II

1 mitosis

Non-brisk lymphocytic inflammation


I have an appointment with a general surgeon tomorrow morning.  The pathology report suggests excising with at *least* 1 cm margins, and from some of the research I've done, it looks like 2 cm might be best due to the mitosis.  I plan to ask the surgeon about that, but is there anything else I should question?

I have no idea what to expect at tomorrow's appointment and I'm pretty nervous.

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summergirl75's picture
Replies 6
Last reply 10/9/2014 - 3:03am
Replies by: summergirl75, JerryfromFauq, POW, Anonymous, Janner

I was diagnosed with Malignant Melanoma on Aug 21st/13.  I had a tiny mole on the inside of my thigh that I had never noticed before.  The doctor said it looked a bit suspicious but said I should not be concerned.  He took it out stating that it would give me peace of mind.  Imagine his and my shock when the results came back.  It was a clark level three, superficial spreading variant.  The tumor thickness was 0.65 mm.  No lymph vascular or perineural invasion was identified.  The pathological stage was pT1b, pNX, PMX (No idea what that means)...The margins were not I had the treatment below.  


My treatment:  I went to a dermatologist who found two basal cell tumors on my face which were removed by sort of a burning treatment...(no pathology report was possible).  A wide excision was performed on my leg and the pathology report came back clear.  Chest x ray clear, blood work clear.  


My questions:  I'm nervous that I should have had a pathology report on my basal cell tumors?  Please give me your opinions on this but don't scare me too much :)

Secondly, I have pain in my left chest and my left hip...I think this is because I had a baby two years ago and I believe that this is just aches and pains related to pregnancy, delivery, holding baby, breast feeding, etc etc...I am going to go to a chiropractor to see if im out of alignment.   Doctors ran a chest x ray which was clear and extensive blood work which all came back clear..  Should I be concerned that even though my pathology report said I am clear that I might not be...? Is there any advice considering the information provided above.  


Also, are there any links to good reliable natural prevention for this.  My oncologist does not believe that this was sun exposure related.  

Thanks in advance, I am just having some anxiety right now about the questions above...

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kentuckycat's picture
Replies 12
Last reply 10/8/2014 - 2:08pm



I had a nodular 3.5mm primary melenoma  on leg 18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  I was then on the ipi vs interferon trial and randomized into the 3mg ipi arm.  I completed ompleted the first 4 doses every 3 weeks and then 4 more doses at 3 month intervals.  This was completed in July.  I just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy was done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  I have looked into some clinical trials and it seems there is one with anti-pd1 but it requires no previous use of ipi.  However in looking at some of the infromation on this site, it seems others have been stage 3 and gotten some systemic treatment.  Is IL-2 normally available for stage 3c?  Thank you in advance for any suggestions.

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hyb222's picture
Replies 6
Last reply 10/8/2014 - 8:38am
Replies by: Janner, Carole K, hyb222

I had a weird mole on my thigh that changed a little last year after sun exposure and then rapidly changed the last 6 months as I began trail running. I had a shave biopsy that came back as an ASN but couldn't rule out Melanoma. I had  WLE that has come back clear but they STILL cannot tell me what I had...basically...we won't say you had melanoma but we are treating it as if it were. A pat on the back and hearty, "see ya in six months". They never even did a full body basic check. I have a spot that looks perfectly normal (just like the one did a year ago before it was excised) that had sharp pains underneath this weekend. Very similar pains were under my ASN. I guess I just don't have peace with "we got it out...but we aren't sure what 'it' was". If I post my pathology report, does anyone have an interest in seeing if they're familar with the terms?


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BrianP's picture
Replies 17
Last reply 10/7/2014 - 9:43pm

Just got my third 12 week scan in a row with the two key phases "Grossly stable" and "no new metastasis".  Not sure why they use the term "grossly stable".  I think "awesomely stable" is a better description.

For a quick recap, I started last August in a Nivo/Ipi/Nivo sequential trial with 4 cm and 3 cm nodes around the liver area.  After 12 weeks of Nivo the two nodes were about 40% smaller.  After the next 12 weeks of Ipi nodes were mostly unchanged but had numerous new mets in my lungs.  Ever since returning to nivo the lung mets have completely resolved and the two original nodes are holding steady.   

The durability reports of the anti-PD1 drugs gives me hope that I can stay this way for quite some time.  Not sure what will be next come August when the trial is scheduled to end.  I listen with great interest to those on the tip of the spear like Celeste and Laurie to see what they are hearing on that front.  Right now I'm just counting my blessings and so thankful for these new wonderful drug options.


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