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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Anonymous's picture
Replies 2
Last reply 7/19/2017 - 2:34pm
Replies by: adrianc, Cindyco

So yesterday I met with Dr.Stephen Hodi and his team at Dana Farber. We discussed treatment options for stage 2 and 3 mucosal melanoma patients. In short, he confirmed that surgical resection is the best initial course  of action for this type of cancer when applicable  . Interferon and Yervoy / also radiation/ are the current options for adjuvant therapy for resected mucosal melanoma for stage 2 and 3 .However he said no one can predict if they can work or not on mucosal melanoma as these drugs were developed for  cutaneous melanoma .Dr.Hodi  gave me a printout of a clinical trial conducted recently in China for patients with resected  mucosal melanoma  stage 2 and 3 with a chemotherapy drug  that showed  promising results / 40% response rate/ and 2 years longer OS. He noted again,no one can predict if this chemo drug can apply individually.If any of you mucosal melanoma fellow warriors is interested in getting a scanned copy of that clinical trial, please  feel free to direct message me including your E-mail address, so I can email  it to you.

Connie D.,I tried to call you this morning .I hope that you mom is doing good and feeling well with not too bad side effects in her current clinical trial.

Have a great day everyone,


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MTCowhand's picture
Replies 4
Last reply 7/19/2017 - 1:54pm
Replies by: MTCowhand, Janner

I live in an extremely remote valley in Montana, closest stoplight is 52 miles away and it is much easier finding a doctor for a horse than a human.  There is in theory only one melanoma specialist in the whole state, which I saw last Friday (I am stage 2b), and I am interested in getting a second opinion.  So can anyone out there recommend another oncologist in this land of the Big Sky and little else?

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Toby0987's picture
Replies 4
Last reply 7/19/2017 - 1:07pm
Replies by: Anonymous, Toby0987, BrianP

Hello-I've been holding steady at 3B since 2013. I see Dr Markovic at Mayo in Rochester, MN. About a year ago the PET picked up low level FDG uptake near my appendix and left mesenteric lymph node. It has grown slightly from .6cmx.6cm to 1.2 cm x.8cm. Have any of you had similar hits on your PETS in this area? I have no Symptoms of appendicitis, but the spot never goes away. Any thoughts? Dr said if I get symptoms to come in right away. He will do a colonoscopy and biopsy the area next PET (5year NED anniversary). 

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The previous post was mine, I forgot to un-check the Anonymous box ,so sorry for posting as anonymous,

Teodora Chasse


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Anonymous's picture
Replies 17
Last reply 7/17/2017 - 1:28pm

I could use some help deciding between two trials:

The first is an open (non-binded) trial that is about to close. I would either get Ipi or Pembro at the standard dosage for each, although as I understand it, they will not tapper the Ipi if you have a negative reaction; they will just stop an monitor. Also, I have a 50 / 50 shot at either drug.

The other trial has 3 options, either a combo of Ipi and Nivo, or either of the drugs independently.  I have a 40% chance at getting the combo, a 40% chance of getting just Nivo, or a 20% chance of getting Ipi.

The only problem is the 2nd study is blind. I won't know which I am getting, and b/c one of the options is a trial, I will have to spend a bunch of extra time getting placebo drugs based on the drug administration calendar (...about 15 extra infusion visits).

I'm torn...

- On the one hand, I'll know exactly what I'm getting, but have a lower chance of getting a (potentially) "better" drug -- In this case Keytruda.

- On the other hand, I won't know what I'm getting, but I'll have a better chance of getting one of the "better" drugs (Nivo) and possibly even a combo (Nivo & Ipi).

There are toxicity concerns as well, obviously. But given that it's highly situational it's hard to really factor that into the decision, although the 10mg dosage of Yervoy scares me quite a bit (particuarly without the ability to taper).

Any thoughts or suggestions??


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Anonymous's picture
Replies 2
Last reply 7/17/2017 - 12:37pm
Replies by: TigerMom, Janner

I am seeking advice regarding a recent biopsy report.  I was diagnosed with Melanoma in Situ in December 2016 and recently returned for a six-month skin check.  A "mole" was removed and the following patholgy report was sent back: 

Right lower back: H&E stained sections reveal a shave speciment of skin in which there is a compound melanocytic proliferation. Within the epidermis the melanocytes are arranged within small nests and single unit cells with mild atypia and disorganized growth yet without full confluence or significant pagetoid spread. Within the dermis there are scattered superficial nests admixed with a patch lymphoid inflitrate and scattered melanophages. Overall lesion appears to be small and relatively well-circumscribed.

IMPRESSION: Right lower back: compound lentiginous nevus with mild atypia, not identified at a margin in the sections examined.

This was read at dermatopatholgy NE in Bellevue, WA on 6/27/2017.

My dermatologist contacted me by letter with a note that said, "contact me if it repigments."

For peace of mind, should my husband and I be assured this is nothing of concern. Or, knowing I was diagnosed six months ago with melanoma in situ, would the recommendation be made to have the original and this present slide read by a melanoma center.

Thank you for helping us understand the report.

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Anonymous's picture
Replies 2
Last reply 7/17/2017 - 11:53am
Replies by: jennunicorn, Anonymous

What have you heard or experienced with Vaccine Treatments?

Hi everyone, this is my first post on the forum. My dad has Stage IV Metastatic Melanoma. I am seeking advice on new treatments that have shown results of improved quality of life and survival outcomes. I have done some background research of my own on treatments and this is what I have found so far:

It seems that one of the most common methods of treatment of malignant metastatic melanoma is chemotherapy with Dacarbazine, or DTIC. It is a cytotoxic drug and one of the few drugs approved by the FDA for treating cancer¹.

There have been studies on the use of Temozolomide, or TMZ, which has shown efficacy at least equivalent to DTIC in patients with melanoma. But overall, TMZ showed an advantage in terms of improvement in quality of life¹.

Another area of treatment focuses more on the immune system. One study MD Anderson Cancer Center researched a three drug combination of cisplatin, vinblastine, and DTIC. The Phase II and III trials suggested a benefit of cisplatin when added to DTIC for patients with the metastatic disease¹.

Combination therapy with Oblimersen sodium and DTIC has shown a significant survival benefit¹.

Biochemotherapy is another area of treatment that has been investigated. Overall, this method of treatment has indicated improved response rates, but not in survival rates. One study by Eton et al investigated CVD (combination treatment with cisplatin, vinblastine, and dacarbazine) vs CVD with intravenous IL-Z and subcutaneous IFN-d¹.

The research on vaccines as a treatment option are of particular interest to me. So far, no vaccines have been approved for prevention or treatment of cancer. However, the use of allogeneic (involving cells that are genetically dissimilar) whole-cell-based vaccines has become more popular². Up to date, the most successful vaccine has been Canvaxin, which contains three irradiated (being exposed to radiation), allogeneic melanoma cell lines between them expressed over 20 different melanoma antigens (toxic/foreign substance that induces an immune response)².

Even though it seems that there has been increasing interest to research vaccines for cancer treatments, there has not been exceedingly substantial progress. This is in part due to investing, but also taking into consideration the high production costs associated with vaccines. Some studies have been halted in later phases of clinical testing because the results have not shown improved survival outcomes². On the other hand, a decent amount of preclinical studies focusing on immunotherapeutics, including vaccines have been shown to enhance anticancer immune responses². The numerous studies of vaccines seem to have varying results, due to the altering the constituents of the vaccine itself.

I have just begun my research on new treatment options, but does anyone have any suggestions on studies to look into or any clinical trials that my dad could participate in? In addition, do you know of anyone who has participated in any vaccine trials? Thanks!


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Scooby123's picture
Replies 7
Last reply 7/17/2017 - 7:57am
Replies by: Anonymous, Bubbles, Scooby123, Julie in SoCal

Hi all, i recent put on my pet results, from starting ipp in 2015 where my cancer was which was liver , lungs, heart, and probs dots around. Ippi shrunk my tumours all over by 50 %. so plan was watch and wait see how long i respond to it. In 2016 i had a 5mm brain met which i was told at the time probably ippi did not stop it in track. Had Gamma Knife for that and thank god clear scan since 2016 on brain.


Had a pet scan which showed every where my cancer was prior starting ippi no intake on scan which is good news. But lymph nodes in chest 2 nodes up on intake. i am planned to have it biopsy on the nodes to see if mel and if yes Radiopherapy we are looking at to treat nodes. My consultant does not want to give me immunotherapy due i think stable eles where and just new nodes which lit up if mel.

My scans from starting treatment never showed any lymph nodes up in chest , so from starting ippi i have progressed but because the areas when had ippi was treated and not changed at all thats why he does not want to give treatment than radiotherapy for nodes.

Do you agree or should i push for immunotherapy or will radiotherapy kill the cancer in nodes. I just dont want to keep getting new areas each year lit up and then hard to control it. Part of me understands but then part of me does not

Please can i have your advice if had this situation or what would you guys do .

Thanks Guys

Scooby x

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HHN's picture
Replies 14
Last reply 7/16/2017 - 10:19am

I am considering Opdivo or Keytruda.  I want a realistic picture of what I would feel like during treatment, day after, and the next few days from patients actually who have had it vs the medical literature.  Thanks in advance.

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Nick C's picture
Replies 7
Last reply 7/15/2017 - 8:05pm
Replies by: Bubbles, Nick C, Ed Williams, Jubes, Anonymous, Sharon93065

This morning I met with my onc before my schedualed infusion. He informed me that my dosage of Keytuda has been increased to 200mg from 155mg. He told me the FDA new recommedaton is for all Keytruda (and Opdivo) to be this new standard dosage regardless of a patient's weight.

I have one more infuson before my next scan...hoping to be NED.

Hang in there my friends...we are making progress!

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RitysMom's picture
Replies 6
Last reply 7/15/2017 - 6:39pm

What started out as a trip to the dr for certain negative news turned into something positive. Kristine had an MRI yesterday at a local imaging center to avoid the long drive into LA. Dr called today after reading the radiology report wanting to see her immediately due to concerns about bleeding brain mets.

Once the dr got the scans, everything changed. When compared to her previous MRI, there was actually slight shrinkage of the tumors. The dr said it looked like the immunotherapy may be beginning to work. This is great news to us!

The dr still wanted to admit her to the hospital to deal with some other issues tho. She's had quite a few blacking out episodes, so dr wants a neurologist to ck her out. She also is unable to empty her bladder and is having severe pain from that. The dr thought it would be better to have Kristine in one place and let the different specialists come to her rather than multiple trips to LA.

I know it's no fun hanging out in a hospital for a few days, but I'm feeling cautiously optimistic from today's events.


Mom of the beautiful Kristine

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jazztubs's picture
Replies 5
Last reply 7/15/2017 - 1:02pm
Replies by: Bubbles, jazztubs, betsyl

Hey All,

I'm looking for anyone out there that has had the Yervoy / Keytruda experience who might also have Crohns disease.  I'm fairly healthy, in my early 40's, with Stage 4 disease.  Lived through IL-2 with 100% response, but then had brain mets a year later, plus a tumor in my intestine.  I"ve been approaching surgically, which has been good, but now time to be pro-active after colon surgery and 3 craniotomys.  Keytruda is recommended, but the docs think the combo with Yervoy is a best-bet.  Problem is I have a history with Crohns, and the doctors are very aprehensive about this one aspect: however, the Crohns as been "sleeping" for about 10 years.  No symptoms, and no treatment for it since surgery to remove strictured intestine in 2007.  So, Crohns doesn't seem to be active.  No adverse reaction to IL-2 or Interferon beyond normal side effects and didn't trigger Crohns

This combo is the best bet, but the potential side effects of Yervoy could be detrimental... Keytruda alone may be fine, but we don't know long-term how fine it will be.

Just looking for experiences with this combo, and especially if someone has Crohns and took the plunge (or had a doctor allowing the plunge).


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Anonymous's picture
Replies 2
Last reply 7/14/2017 - 8:47pm
Replies by: Anonymous, cancersnewnormal

Hello everyone,

Would be interested to see if anyone else has had a similar experience with pd-1 mono therapy. 

Right now I am stage 3b, completion lymph node dissection of the neck. (1 year cancer free, thank goodness). 

Currently enrolled in SWOG 1404 and randomized to pembro, recieving it every 3 weeks for a year in the adjuvant setting.

About 5 months into the trial I started to experience abdominal pains after eating certain meals, but not others. I thought it was isolated to dairy or cheese perhaps (I think it may be partially, as both will knock me out of commission if I over indulge). However, it will also hit at other random meal times and is relatively inexplicable. A salad with corn on it the other night really did it as well. Generally it is nausea/stomach pain and cramping followed by a real need to lie down and certainly a bit of gas.

The secondary piece to this puzzle is that my eosinophils have been really spiked by the pembro-I'm currently 35% over baseline. 

Has anyone else ever heard of or put together this corrolation, or am I just crazy? Simethicone (Gas X) seems to generally do the trick, so we are continuing infusions. Just wondering if its one of those "itis" side effects....

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HEGCWM's picture
Replies 3
Last reply 7/14/2017 - 8:20pm
Replies by: HEGCWM, sister of patient, Anonymous

saw PA last week ans asked about adjvuent terapy now that they can treat BRAF negative with optivo etc. Was tod it was no help since surgery as 2 years ago and no relapse. stage 3 micro metistatic, full node removal right axila.

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rick1981's picture
Replies 12
Last reply 7/14/2017 - 4:51pm

Hi everyone, My wife (Stage IV since June '14) has started on Keytruda Wednesday this week and she also got a shot of Xgeva to strengthen her bones. She was in a pretty good physical condition at that point, walking every day, feeling well - but she has gotten severe bone/joint pains and has had fever & sweating spells since. I have looked at the archives here at MPIP and have found that Pembro can cause arthritis-like symptoms and the Xgeva could cause the fever. But if you have any more thoughts, I'd be happy to hear as it's just a shock to see her move from such a good state to being bed-ridden after the start of Keytruda. Just hope these are side effects (and not directly due to the melanoma; she had "tumor fevers" in June) and that these are signals of the therapy working. It’s scary to see her change so quickly... Thanks for any advice!


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