MPIP: Melanoma Patients Information Page

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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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Citrus89's picture
Replies 8
Last reply 2/20/2020 - 10:16am

Hi everyone! I am new to this site but not new to Melanoma. My husband was diagnosed in 1996 with stage 3 melanoma. He had widen insecion with clean margins and a sentinel node biopsy that showed it did not travel. No further treatment was done. Fast forward 23 years of taking care and watching closely, the melanoma returned in a mass on the back of his eye. A needle biopsy confirmed it. A pet scan showed a few other spots but not in any major organs. The biggest spot was in his adrenal gland. We have a good oncology team but we did make a quick trip to NYC to see Dr. Chapman who confirmed the treatment of the combo. He suggest 2 treatments and then a rescan. Our oncologist was open to rescanning after after two doses. On Feb 5, my husband had his second treatment. The side effects this time have been all stomach related with diarrhea and acid reflux. Our physician has been prescribing all over the counter drugs including Imodium, nexium and gaviscon. He has barely eaten in days and nothing stays in. I would appreciate your thoughts and suggestions.

Thank you

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Tsvetochka's picture
Replies 3
Last reply 2/18/2020 - 8:15pm
Replies by: JudiAU, doragsda, Edwin

I just had a full body PET CT scan with contrast. Now my doctor wants me to have an MRI to check my brain. Wouldn't that have been on the PET scan? I could see my head in the images I sent on to the doctor. The write up starts with "Head and neck." Is that not enough?

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hxcadam's picture
Replies 7
Last reply 2/19/2020 - 6:29am

I posted a week or 2 ago about my story and since have been only prescribed Nivo from my doctor. I questioned her and she kept reiterating how toxic Ipi is. But everything i've read says Stage 4 SOC is Ipi+Nivo combo. And even if side effects occur and you don't finish the complete regimen the results are the same. Is this the case? Is my Onc being too cautious because I got Colitis 3 years ago when I was dx Stage 3c and got Ipi by itself. I believe I got it at a much higher dosage as well 10mg/1kg sticks in my mind. Will it be too late to start the combo if my scans in 2 months show no change? I'm BRAF positive with 2 small brain mets, 2 lung and 1 spleen. She seemed to think next step would be Mek inhibitors I believe. I'm just trying to get the best chance possible.


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Anonymous's picture
Replies 2
Last reply 2/27/2020 - 9:29am
Replies by: allybake, casagrayson


I noticed this darkened purplish band on my middle toe a couple of days ago and I’ve been obsessed looking at it ever since. I made an appointment with my dermatologist but thought I’d post here and see what you guys think.

From the pictures I’ve seen online, usually it’s a black or brown stripe and I’m worried that because mine is a lot wider than a stripe that it means it’s been there for a while.

Here is a link to the picture:

Appreciate any help I can get. Thank you

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Anonymous's picture
Replies 1
Last reply 2/24/2020 - 12:08am
Replies by: Ciucco

I am a 41 year old female. I had a mole that newly presented on the back of my knee. It was about 6mm and very very black. I had it biopsied and the results were: Spitz Nevus - Junctional. The report read orderly nests were present, large nuclei, and some pagetoid spread with many melanocytes present. It was recommended that I have a complete re-excision to remove it completely due to my age, rareness of this growth, and because atypical cells were present. I had the re-excision and I am awaiting the results. I am concerned because I have read about misdiagnosis being common in adult patients with spitz nevus. I have a family history of melanoma with an uncle diagnosed with Ocular Melanoma and a maternal first cousin diagnosed at the age of 24. Both family members were diagnosed stage IV. Should I have a second opinion? or is this pretty standard?

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jennifer83's picture
Replies 11
Last reply 2/18/2020 - 5:04pm

Haven't talked to my doc yet, but this looks good to me :)

These are the results of the scans I've had after 4 months of ipi/nivo treatments following Stage 4 diagnosis:

Study Result
Interval decrease in size of the left hilar adenopathy and pulmonary metastases. The hepatic metastases have decreased in the interim.

The subcutaneous of the peritoneal metastases are noted along the visualized.


Examination: CT CHEST ABDOMEN PELVIS W CONTRAST, 2/15/2020 9:42 AM

Clinical History: Secondary malignant neoplasm of liver and intrahepatic bile duct
Secondary malignant neoplasm of bilateral lungs
Secondary malignant neoplasm of bilateral lungs
Metastatic malignant melanoma

Indication: assess for disease response

Comparison: November 9, 2019

Technique: CT of the chest, abdomen, and pelvis was performed with intravenous contrast.


Technique: Multidetector helical CT data acquisition of the chest, abdomen and pelvis was performed at 2.5 mm axial slice reconstruction following administration of intravenous and oral contrast material.

COMPARISON: November 19, 2019.


CHEST: The heart is normal size.

The left infrahilar adenopathy has completely resolved soft tissue is noted in this region measures 0.3 x 0.5 cm and has decreased in size from 2.5 x 1.6 cm.
The metastatic lesion present within the left lower lobe has decreased in size from 2.9 x 1.5 cm to 0.9 x 0.6 cm.

Abdomen and pelvis: Hepatic metastatic lesion present within segment IV measures 1.4 x 0.9 cm and has decreased in size from 2.7 x 2.3 cm.
There is no intrahepatic or extra hepatic biliary ductal dilation.

The spleen, the adrenal glands and the pancreas are normal.

The kidneys demonstrate symmetric contrast enhancement and there is no evidence hydronephrosis. Stranding is seen within the retroperitoneum along the aorta and the celiac axis, is nonspecific and can be followed. The omental nodule seen on the prior examination is no longer visualized.

Sections through the pelvis demonstrate no fluid collections. There is no pelvic or inguinal adenopathy.

The nodules present within the left gluteal region in the anterior abdominal fat are no longer visualized. No definite skeletal metastases are noted.

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Anonymous's picture
Replies 3
Last reply 2/17/2020 - 11:03pm
Replies by: Lucas, TarlieT, Linny

Hello - Stage IV here and have completed four Opdivo/Yervoy treatments.

Just wondering if rising LDH levels are anything to be concerned about? I started in the normal realm of LDH when I was diagnosed, but my last labs shot up from 218 to 369. I'm reading that this may indicate further metastasis, but am unsure. Can any experts weigh in, please?


Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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Replies by: Andrea67, lkb

Nice video from fall of 2019 at ESMO, where Dr. Weber explains typical side effects caused by immunotherapy type drugs called check point inhibitors, examples are drugs like Ipi (Yervoy), Nivo (opdivo), Pembro ( keytruda) or combination of Ipi+Nivo. They call side effects IRAE's (immune related adverse events).

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Dr. Charles Drake is a leading expert in research into T-cell and following video is from NYC Immunotherapy Patient Summit 2018.

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donna conn's picture
Replies 1
Last reply 2/18/2020 - 12:48pm
Replies by: sister of patient

First of all I want to thank all responses to my post asking about issues with taking tafinlar/mekinist. The suggestion of watching you tube videos was especially helpful!! My Dr finally prescribed 10 mg of prednisone daily to help with the side effects and thankfully that has made taking the medication bearable. When I returned for my Pet scan the pelvic tumor had shrunk, however a new spot of intense metabolic activity showed up in my spleen. I just had a CT of my abdomen and pelvis and am waiting for results of that. I’m hoping it’s something other than the spread of melanoma. Has anyone had to have a partial or complete removal of their spleen? Just concerned as that compromises the immune system. Also I’m having difficulty dealing with these continual failures in combating this cancer as well as my declining mental and physical abilities. I’m already on an antidepressant, it just doesn’t seem to help that much. Suggestions appreciated.


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Anonymous's picture
Replies 2
Last reply 2/13/2020 - 1:53pm
Replies by: ed williams, tkoss

I am over 3 years out from diagnosis as 3a and I am NED. In a recent appointment with my Derm he restated a point that he has been saying consistently through my surveillance, that the research indicates that regardless of when a recurrence is discovered (actively through surveillance or when symptoms appear) the standard of care is the same and the outcome will be the same. Meaning that treatment will work or it won’t.

I am from Canada so I know standards of care differ by country.

Has anyone else had similar conversations/experience with members of their care team

What can be asserted without evidence can also be dismissed without evidence.

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sister of patient's picture
Replies 3
Last reply 2/18/2020 - 10:43am

Just posting this to add to the knowledge bank - in case anyone else is ever searching for info on this topic:

My sister, Leisa, had two skull lesions discovered last fall, after 2 years of being NED. One is located on the inside of her forehead, right frontal lobe area; the other is in the back of the skull and is in an area that is totally inoperable. The first was discovered with a regularly scheduled MRI, the second was found with followup scans that included a bone scan, CT of just the head and repeated MRI. A treating neurosurgeon wanted all scans repeated and then a PET scan done pending a plan to remove the lesion from her forehead (like a WLE but in bone). BUT - great news - after all scans were repeated (no PET), images are showing that both of them have decreased in size by half - yayyy!!!! So, plan now is just to watch and see what they do. They've never really acted like mets - they could actually just be cysts on the bone but of course, with her history, they are suspect. For now, we're happy with this!!!!!

Wishing great things for everyone here!!


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Ran's picture
Replies 3
Last reply 2/13/2020 - 4:58am
Replies by: Ran, Bubbles

Hello, I am a Chinese and my aunt have been diagnosed with melanoma. We found it late and missed the best period. The worst thing is that the best cancer hospital in China do not allow patient hospitalization because of the coronavirus. It is still unknown when the situation will be better, so we have to find a hospital which can receive patient. Here is her diagnose:

Beijing Cancer Hospital
Disease diagnosis
Name: Huiqin Qu
Gender: Female
Age: 57
Department: Kidney Cancer Melanoma Medical Ward
Admission date: 2020-01-17
Discharge date: 2020-01-22
Work Place: Gaoyang mining company

Brief condition:
1. Anal downbearing distention.;
2. Bowel habit has changed for 3 months.

1. Anal canal melanoma metastasis;
2. Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs);
3. Director Jun Guo suggest plan T1 Combined liver interventional chemotherapy. Taking into account the late liver intervention, the drugs for this chemotherapy were injected from platinum intravenously.

Start T1 Plan chemotherapy:
1. Temozolomide 320mg, d15
2. Cisplatin 40mg, d-3
3. rh-endostatin 15mg, d-14
Body reaction: feel sick and vomit

Suggestions of therapy after leaving hospital:
1. continue rh-endostatin until 2020-01-31. Keep monitoring blood routine, liver and kidney function(1-2 times/week). If the patient has symptom like fever, fatigue, nausea, vomiting, etc, improve the test in time and give symptomatic treatment. If leukocyte<2.0*10°/L or Neutrophil<1.0*10°L, patient can be treated as G-CSF. If platelets<50*10°/L, patient can be treated as interleukin-11 or TPO;
2. Return to the hospital on time for liver intervention therapy before improve blood routine, biochemical and coagulation functions;
3. Carry out plan T1 chemotherapy in the second period and make an appointment for hospitalization in advance;
4. Review of chest and abdominal pelvic CT and evaluate the efficacy;
5. Subsequent visit.

Leaving hospital diagnosis:
Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs)

If you have any suggestions, please let me know. I and my families will appreciate your help very much.

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swissie's picture
Replies 2
Last reply 2/12/2020 - 10:02am
Replies by: hxcadam, swissie

Hi guys,

Sorry for not getting back here, you have helped me in the past through some difficult times.

My melanoma story started in 1991 when i had my first mole removed (which turned out to be melanoma). It was thick, but the only check done at that time was the 3 months check.
Fast forward to 2008, when i noticed a mole changing.
Went to a dermatologist in May to have it checked. He told me it looked totally fine. However, i wanted it removed, which he did in September.

In September it turned out to be melanoma after all. SND turned out to be uncertain, but they thought it was ok.
In 2009 (July) i felt a lump in my lymph nodes, which turned out to be cancer.

I participated in a double blind trial with ipilimumab (10 mg).
After getting a collitis after the 4th infusion i was certain i was on the ipi side. I ended the trial after 8 infusions as a result of side effects.

Last year the trial was unblinded and i happed to be in the placebo group.
So even more than before, happy to be out here.

Yesterday i went for my yearly check which resulted in either the removal or a punch biopsy today.
In the last 10 years they removed one mole which was atypical and i had many pictures taken and reviewed after a couple of months.
Getting nervous...

I'm so glad the developments continued so even if things turn out to be cancer again, the situation today is so much better than it was 11 years ago.

Let's hope for the best. Results to be discussed on the 26th.

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