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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CancerSpouse's picture
Replies 7
Last reply 12/6/2017 - 8:52pm

Hey Warriors!

My husband, John, is in a UCLA clinical trial involving SD-101/Dynavax injections in combination with Keytruda infusions. The SD-101 always triggers a headache. And especially following double treatments, his headache is sustained for several days and quite severe in the first 48 hours. He also has fever and chills, as is typical.

He has alternated Tylenol and Advil for headaches and used Oxycodone during the most painful period. None seem to help enough. I would appreciate any suggestions that have worked for you or your loved ones with regard to treating the severe headaches.

BTW, the tumor on his deltoid that is being injected with SD-101 has shrunk dramatically. But we won't know about how the combo is affecting his other tumor on an adrenal gland until after his 90-day scans in December. Here's hoping ...

Keep up the fight!



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Dhva's picture
Replies 5
Last reply 12/2/2017 - 5:48pm
Replies by: kst, Dhva, Bubbles, jennunicorn

Originally told Nivo treatment would be every 2 weeks for a year and then be re-evaluated. After the 4th treatment the dr phoned in an rx for propranolol, with no information or discussion.  Now it looks like it is being stopped after 12 weeks with no explanation. Is this a normal length of dosage time? Could it be related to the rx decision? Thanks

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PinkPenguin76's picture
Replies 2
Last reply 12/4/2017 - 9:50am
Replies by: Anonymous, PinkPenguin76

I am starting to get nervous... Doctor looked at a growing/spreading mole on my shoulder and didn't refer me to specialist (derm)... Instead he immediately set up appt for punch biopsy via another doctor at my primary care facility who also is not a derm. Is this a bad sign that he already suspects melanoma? I've not been well lately and even have a 7.4'm cyst on my spleen. My lymph nodes throughout my body are large, hard, fixed and tender... Antibiotics did not help, nodes still getting bigger... Fatigue, night sweats, hard to breathe and even large node found in breast... And now dizziness plus weird troubles with thought process/balance... Just looking for support... Anyone else been immediately sent for biopsy and not referred to a dermatologist?

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kelweb's picture
Replies 3
Last reply 12/7/2017 - 9:31pm
Replies by: BrianP, MichelleRHG



Has anyone delt with mets to the small bowel and had surgery?

My husband is 36, and has mets to the small bowel. The mets are causing thickening of the intestine and causing a blockage. He also has mets (lymph nodes) to his mesentary. He was hospitalized over the week, and the plan is surgery to hopefully remove the portion of bowel causing the issues. We still havent met with a surgeon yet to see what the exact plan is though. In the mean time, the poor guy is on a liquid diet to keep from getting a bowel obstruction. :(

My question is, if you had surgery, who did it? Anyone you would reccomend? We are looking for the best. We want someone to be as aggressive as possible and remove as much disease as possible. My husband is stage Iv, but determined to beat this! We have an appointment with a surgeon at the U of Washington on the 11th, but we want to have a back up in case we need a second opinion.

He has been at this for four years, and has been through interferon, yervoy, nivolumab, a clinical trial that included nivo and an oral med, and he is now on tafinlar and mekinist. Hoping for a long response on the taf/mek because he feels so good on it! After taf/mek, we will hopefully find a clinical trial.

Hoping everyone is feeling well, and keeping up the good fight!!

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Anonymous's picture
Replies 2
Last reply 12/24/2017 - 7:11am
Replies by: Anonymous, Janner

I'm curious... if you have a mole that starts changing, does that means it's ALWAYS been melanoma, or did it just turn into melanoma if it starts changing? Would that mean if you are watching moles carefully you'd be sure to catch melanoma early since you are sure of when it started changing?

also, will melanoma just continuously change? Or is there a point at which they stop changing and are just internally doing bad things. 

Thanks in advance!



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mrsaxde's picture
Replies 4
Last reply 12/2/2017 - 1:29am
Replies by: Spl25, Mark_DC, Bubbles

Season's Greetings to all!

I wish I had some really good, positive news to share about my scan last Tuesday. Unfortunately the results again are, while not disastrous, not great.

The good news I suppose is that the disease is still confined to my thoracic lymph nodes, with no organ involvement or enlarged abdominal nodes. I am not a medical professional, and my wife happens to be, but not in this field, and to us the radiologist's report seems to indicate that I am getting little if any benefit from the combination of Opdivo (nivolumab) and relatlimab (the investigational anti-LAG-3 medicine).

Here are the pertinent parts of the radiologist's report:

"1.  Increasing metastatic disease.
2.  Enlarging right axillary lymph node .
3.  Enlarging left hilar lymphadenopathy. Remainder of the known hilar and subcarinal lymphadenopathy is essentially unchanged.

Lymph nodes: Hilar and subcarinal lymphadenopathy are redemonstrated. Representative nodes:
Enlarged 4.2 x 3.8 cm left hilar (6:420), previously 3.2 x 3.0 cm remeasured.
Enlarged right axillary node, measuring 2.1 cm (2:31), previously 1.5 cm.
Unchanged 3.1 x 1.9 cm subcarinal node (2:53), now centrally cystic/necrotic.
Unchanged 1.1 cm node along left side of the left main pulmonary artery (6:279),
Subcentimeter left axillary and supraclavicular nodes.
Unchanged 3.9 x 3.5 cm right hilar (6:293).
Unchanged 1.3 cm right interlobar (6:392)."

I see Dr. Sharfman again on Tuesday, and I suspect this time I will be done with this trial. My local oncologist brought up PV-10 as a possibility for treatment, and Dr. Sharfman said after the last scan that if things weren't moving in the right direction we have "other options." I guess we'll soon be finding out what those options are.


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PNK FLOYD's picture
Replies 2
Last reply 12/1/2017 - 2:08pm
Replies by: PNK FLOYD, Bubbles

Hello everyone, this is my first post.  I am the wife of a great man fighting this Stage lV melanoma world.  While there are many questions and I have learned a great deal from you melnoma warriors, the biggest concern now is the weight loss.  METS on liver, stomach and right pelvis.  Fullness and bloating and little to no room in stomach for food or liquids.   2 days ago removed 2.4L off stomach and 0.9 of L lung and 0.7 off R lung.  9 lb difference.  He is starting to get bloated already and only able to eat small amounts daily.  Dr. has not been a great help.  Did start him on Lasix 20mg 2 days ago but not making much of a differnce.  We can't afford to loose anymore weight.  Treament #3 of Obdivo on Nov. 28th and recently received news of his genetic results.......NRAS - Q61K.....I am just lost in all this and what it means.  Debating on a second opinion?  Intial diagnosis March of did we get here?

The Floyds

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Janicei30's picture
Replies 3
Last reply 12/4/2017 - 7:22am

I used to visit here years ago. Had stage 2 modular myeloma I removed from my back in 2017. Centinal node and 5 others removed under my left arm all clear. 17 years later I noticed a lump under my left arm, have just had ultra sound, mammogram... It is at the edge of the breast tissue. Hopefully I find out tomorrow when I can see a surgeon. Has anyone else had something like this.


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Spl25's picture
Replies 3
Last reply 12/2/2017 - 7:55pm
Replies by: Spl25, mrsaxde

Just had a CT after 15 months of success on pembro. All lesions have shrunk or are stable, except for an arteropulmonary “AP window” lymph node near the heart and lungs. its grown to about 2.3 x 1.8 cm for normal size of 1.2x1. It may just be a response to infection. We will be sticking with Keytruda but scanning a bit sooner than usual. Has anyone had experience with enlarged nodes in this area? Are there specific dangers associated with growth in this area? Any advice would be helpful.

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Anonymous's picture
Replies 3
Last reply 11/29/2017 - 10:40pm

I have been on Optivo now for 2 years - infusion every two weeks.  My oncologist is recommending I go off treatment.  I am stage 4.  I am afraid it will come back if I stop.  What have other patients experienced?  Any recommendations?

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jjk17's picture
Replies 9
Last reply 11/30/2017 - 9:02pm

Hi all!

I know I posted about this a couple weeks ago and reached out to some, but is anyonr treating at Mayo Clinic? Has anyone is anyone on this clinical trial now?! Side effects? How are things going? Feeling good/bad? What not to do or what to stay away from?!

Sorry for all the questions! I'm getting anxious! Thanks in advance!

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Maureen038's picture
Replies 1
Last reply 11/29/2017 - 11:25am
Replies by: Maureen038

MSK-IMPACT™ Is the First Tumor-Profiling Multiplex Panel Authorized by the FDA, Setting a New Pathway to Market for Future Oncopanels
New York, NY,
Wednesday, November 15, 2017

The US Food and Drug Administration (FDA) announced today the authorization of MSK-IMPACT™ (which stands for integrated mutation profiling of actionable cancer targets), a high throughput, targeted-DNA-sequencing panel for somatic mutations. Created by the Department of Pathology at Memorial Sloan Kettering Cancer Center (MSK), MSK-IMPACT is a 468-gene oncopanel intended to detect gene mutations and other critical genetic aberrations in both rare and common cancers. While MSK-IMPACT had previously been approved by the New York State Department of Health as a clinical test, it is now the first tumor-profiling laboratory-developed test (LDT) to receive authorization through the FDA. This decision will help create a new pathway to market for these types of tests.

“This authorization builds on MSK’s rich history of innovation and longstanding commitment to precision medicine and large-scale clinical sequencing,” said José Baselga, MD, PhD, Physician-in-Chief at MSK. “This milestone authorization is a testament to MSK’s expertise in the rapidly expanding field of genome-driven oncology and will set the precedent for future approvals of this type.”

The MSK-IMPACT assay is a qualitative in vitro diagnostic test that uses targeted next-generation sequencing of formalin-fixed, paraffin-embedded tumor tissue matched with normal specimens from patients with solid malignant neoplasms to detect tumor gene alterations in a broad multigene panel. The test is intended to provide information on somatic mutations (point mutations and small insertions and deletions) and microsatellite instability (MSI) for use by qualified healthcare professionals in accordance with professional guidelines. It is not conclusive or prescriptive for labeled use of any specific therapeutic product. MSK-IMPACT is a single-site assay performed in the diagnostic molecular pathology laboratories at MSK. To date, more than 20,000 MSK patients with advanced cancers have had their tumors sequenced through MSK-IMPACT, and the resulting data have helped guide therapy while providing a wealth of new information about the genomic features of both common and rare cancer types.

The FDA reviewed data for MSK-IMPACT through the de novo premarket review pathway, a regulatory pathway for novel, low- to moderate-risk devices that are not substantially equivalent to an already legally marketed device. Following the de novo authorization, the FDA intends to allow future, similar tests to come to the U.S. market as substantial equivalents.

“The authorization of the MSK-IMPACT assay by the FDA represents the culmination of a considerable joint effort by the MSK team and our counterparts at the FDA. We are grateful for the guidance and helpful dialogue provided by the FDA that made this happen,” said Marc Ladanyi, MD, Attending Pathologist and Chief of the Molecular Diagnostics Service at MSK.

“Pathology guides almost every decision point in the cancer treatment process, and MSK-IMPACT has enabled our pathologists to provide a better understanding of the genetic underpinnings of each patient’s illness,” explained David Klimstra, MD, Chair of the Department of Pathology and James Ewing Alumni Chair of Pathology at MSK. “The valuable data obtained through the sequencing can guide treatment choices and, in some cases, identify patients who are candidates for a cancer clinical trial.”

“While clinical trials are vital to developing and improving treatments, only 4 percent of all patients enroll in cancer clinical trials each year. MSK-IMPACT is designed to address this problem,” said MSK-IMPACT test developer Michael Berger, PhD, Associate Director of the Marie-Josée and Henry R. Kravis Center for Molecular Oncology and Assistant Attending Molecular Geneticist in the Department of Pathology at MSK. “MSK-IMPACT has helped doctors accelerate the enrollment of patients into cancer clinical trials, potentially leading to earlier approval of new therapies.”

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TinaW's picture
Replies 5
Last reply 12/1/2017 - 9:25am

I was diagnosed stage 3 melanoma on my back with mets to some lymph nodes. I did 1 year interferon and was clear since 2009. Four months ago I had a ct scan that showed 2 small nodules on my left lung, and the dr decided to do wait and do another ct in November. This ct shows the original nodules have increased in size and several new nodules in both lungs. I see the dr in 2 days and I would like to know what to expect and what questions to ask him. What are my chances that I can beat this?

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1Cbras's picture
Replies 6
Last reply 11/29/2017 - 7:34pm
Replies by: Janner, 1Cbras

So,after two weeks I received my biopsy report. It determined a lesion on my foot to be LENTIGO ATYPIA. The doctor said because the margins are clear no further treatment is required. What exactly is LENTIGO atypia?

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