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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Replies by: lkb, JudiAU

"For the past three years, cancer researchers at two of the UK’s leading institutes have been showcasing the unexpectedly beautiful side of their work through a special award.

Staff from the Institute of Cancer Research (ICR) and the Royal Marsden NHS Foundation Trust, both in London, submitted the images they felt exemplified the beauty and complexity of their work for the ICR Science and Medical Imaging Competition."

Read more: https://www.newscientist.com/article/2234301-close-up-image-of-brain-can...

Two scaning electron microsope images of a melanoma cell get mentioned among the top six images in a medical imaging competition.

https://www.newscientist.com/article/2234301-close-up-image-of-brain-can...

1. Melanoma cell invasion in 3D
Vicky Bousgouni and Chris Bakal

"This picture of an aggressive melanoma cell (green) growing into a matrix of collagen was taken by Vicky Bousgouni, Chris Bakal and David Robinson. It is one of the first 3D images of cancer cells to be taken using scanning electron microscopy. Collagen matrices are used to model how cancers invade tissues during the metastatic process. Here, the cancer cell pulls on its fibres and wraps itself in collagen to remodel its environment and increase the chances of survival."

2. Melanoma on a Chip
"A metastatic melanoma cell that has been blasted open
Nick Moser and Chris Bakal

Imagine cutting an apple in half and looking at its core – that is a little like what has happened to this metastatic melanoma cell. Nick Moser and Chris Bakal used an ion beam to blast away part of the cell, a technique known as ion-beam milling.

The triangular shape was caused by the angle of the beam as it cut into the cell and the silica substrate it is growing on, creating the illusion of depth. The method allows researchers to see inside cancerous cells in unprecedented detail and understand what is going on internally.

As melanoma cells attach to surfaces using structures called focal adhesions, removing part of the cell lets them see what happens when these structures form. The spread of cancers around the body is the primary cause of death from the diseases, so understanding how such cells attach to tissues is vital to cutting death rates."

I am sharing this article I came across in hope that these bring more insight into the world of melanoma and also help us visualize melanoma demise.

Melanie

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sks2019's picture
Replies 3
Last reply 2/21/2020 - 12:00pm
Replies by: jbronicki, JudiAU, tkoss

In case people have been looking at my posts and wondering what has been going on with my mom. I am writing an update more of to vent it out.
Mom's liver mets are growing and growing fast. PET/CT on Jan 10 the biggest tumor size was 7.6x7.7 cm with many small ones 2- 3 cm . Now CT on Feb 14 showed biggest tumor is 9.2x6.8 cm
so almost 2 cm in less than 30 days. CT also reveals spot on right kidney not sure what it means but given how things have been going on with her. I woudnt be surprised if its mets.

SHe had no treatment since nov 5 (ipi/nivo side effects) , Is very tired and nausauted , having adrenal insufficiency so taking 15mg hydrocortisone for that.

Tumor burden is taking over as her energy is gone and she has lost appetitie due to nausea .
Today she will be starting a trial with NIRAPARIB. Please pray it works for her.
At this point I am just preparing myself for the worst scenario :(

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Tsvetochka's picture
Replies 7
Last reply 2/21/2020 - 12:46pm
Replies by: tkoss, Tsvetochka, ed williams, hxcadam, Anonymous

In May 2019 I was diagnosed with Stage 4 melanoma, no known primary. I started Keytruda in June. It's gone pretty smoothly. Fast forward to now: my doctor ordered a PET CT. When I look at the results, it seems like there's still some cancer. Two tumours are still there, but inactive and smaller than the last CT scan. One lymph node is still active: "1.9SUV," which is supposedly not significant?

I sent the results to my doctor, and she just answered that they're good, we'll stop treatment. I have an appointment with her in a week or so, and I know we'll discuss it then. But I am just wondering what does this mean? I'm not really NED, right? Is it (almost) No Evidence of (active) Disease?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

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Baby_Girl's picture
Replies 4
Last reply 2/21/2020 - 10:52pm
Replies by: Baby_Girl, maryb-z, Edwin

I am stage 3 and my last scan was about 4 months ago and was clear. I will have my 12th and last dose of Opdivo this month. All my scans have been clear since my WLE/SLND January of 2019. My next scan is in a couple weeks. I called to asked and they said this was a head to mid thigh PET scan. The last one I had was whole body. I am wondering what other stage 3 (or stage 4) patients usually get. Whole body or skull to thigh? It seems my surgeon is more aggressive and he has been the one to order whole body scans but my oncologist seems to only order to thigh. Should I call and request whole body or is skull to mid thighs sufficient?

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Anonymous's picture
Anonymous
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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REESE8590's picture
Replies 4
Last reply 2/24/2020 - 12:21am
Replies by: Ciucco, lkb, REESE8590, Bubbles

Hello everyone, my name is Kevin. Let me first apoligize for the poor grammar, misspelled words or incorrect terminology i may use. I would like to share my story with melanoma along with my current status and ask opinions on what I might expect going forward. I was first diagnosed in 2013 by a mole i had biopsied on my neck. At the time I lived in Maryland and didnt have health insurance. I had to go through state assistance and the care that i received was mediocre at best. I was sent to a surgeon who did an Excision of the site, removed the mole and some of the surrounding area along with some lymph nodes. For whatever reason...probably not having insurance...i was not offered any kind of post op treatment or therapy of any kind.
During recovery from that operation, i moved out to the chicago area to be with family and have been here ever since. In 2015, i noticed a swollen lymph node in my neck, just a few inches away from where my mole removal was. This time i had insurance, so i did some research on the best melanoma doctors near me. I settled on Dr. Gajewski at the University of Chicago. I went in for my visit and they did a fine needle biopsy of the swollen node and it turned out that the melanoma was back. The plan of attack this time was to have surgery, a full left side neck disection. The tumor and several lymph nodes were removed. Dr. Gajewski suggested that for post op treatment, i sign into the immunotherapy clinical trial that was going on at the time for Nivo and Ippy. It was a blind trial and to this day i still do not know which drug i received. I will say...it was a much better experience than my first surgery. it was nice having a team working on my case. So, anyways I do the clinical trial, which was supposed to be treatments for a year, i think. I ended up being removed from treatments because i had a side effect. The CT scan i had after being on the trial for 3 months showed a spot developing on my right lung. So they immediately wanted to have that spot biopsied. I was sent for a CT guided lung biopsy. As many of you know...this isnt the most pleasant expierence. Apparently most of these are done as Outpatient surgeries. Mine was Inpatient and i was kept for 1 night for monitoring, plus i had a drainage tube, that they removed the next day. What a painful moment that was.
The news was great, the spot on the lung was not cancerous. However, i developed Sarcoidosis as a result of the immunotherapy. Certainly news i could live with.

All that said...so far my questions to my fellow patients are: Has anyone else here developed Sarcoidosis ? if so, what has been your expierence with it ? Have you expeirenced any flare ups ? Also, is anyone else here a patient of Dr. Gajewski's ? Or a patient at University of Chicago ? Just curious your thoughts on the University and care youve received there.

So as of this past August/2019, I went almost 4 years with clean scans. My most recent scans, January/2020, now shows a nodule growth on the left lung this time. 14mm x 15mm, along with a couple enlarged lymph nodes. I am currently awaiting a phone call to setup another CT guided lung biopsy. Naturally, I am anxious to find out if the melanoma has metasticised to the lung. Of course my hope is that it my Sarcoidosis flaring up. I dont know how realistic that hope is. I have read that its a possibility. Which leads to the rest of my questions...what have been some of your expierences with development on the lung ? What can i expect as my next treatment if it is determined that melanoma has spread to the lung ? I am 35 years of age and feel great BUT i know that doesnt necassarily mean anything. Below is the reults of my last scan. Thanks to anyone taking the time to read this and respond !! I am VERY appreciative and grateful for any discussion suggestions.

CLINICAL INFORMATION: Male 34 years old Reason: patient in follow up following treatment
on clinical trial. please identify and measure index lesions per recist criteria. compare
with previous images History: metastatic melanoma

TECHNIQUE: Axial CT images are obtained through the chest, abdomen and pelvis after
administration of oral contrast and 100 ml intravenous Omnipaque 350. Coronal reformats
were also generated and reviewed.

COMPARISON: CT dated 8/3/2019

FINDINGS:

CHEST:

LUNGS AND PLEURA: There is a new nodule in the left lower lobe measuring 15 x 14 mm image
#74, series #205 compatible with metastatic disease. Likely postsurgical changes in the
right middle lobe, unchanged. Other scattered micronodules are grossly stable.

MEDIASTINUM AND HILA: Index right hilar lymph node is stable measuring 10 x 11 mm image
#30, series #201. However interval increase in the size of the left hilar lymph node which
now measures 2.4 x 1.3 cm image #35, series #201. This node was measuring 6 x 10 mm image
#43, series #301 on the previous study. More posterior pericardiac node on the left side
is also increased in size within the interval.

CORONARY ARTERY CALCIFICATION: None.

CHEST WALL: No significant abnormality noted

ABDOMEN:

LIVER, BILIARY TRACT: Multiple small hypodense lesions in the liver including the index
lesion measuring 6 mm in the right lobe on image #64, series #201 are stable. Metastatic
disease cannot be excluded.

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tkoss's picture
Replies 4
Last reply 2/24/2020 - 12:01pm
Replies by: almostalice, Becky, tkoss, JudiAU

does the melanoma take hold at the place on the epidermis exposed, or can iit show up on other parts of you skin, maybe adjacent , maybe not so adjacent?

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almostalice's picture
Replies 2
Last reply 2/24/2020 - 3:37pm
Replies by: Bubbles, sks2019

I didn't expect 15 years later to gain so many new insights into my case. I came up CDKN2A positive and after over a year of insurance battles I'm finally getting a CT tomorrow focused on pancreas. 6mm depth Nodular 15 years ago was the highest staged primary but since then I've had several SSM's and an insitu.

I got to thinking more and asked around about slow melanoma's.

I had severe hypothyroidism found about 5 years after my first encounter with Melanoma. My TSH spiked up to 56 (not a typo ...). We got it down to range 0.9 to 2. If I don't take thyroxine my TSH creeps back up.

Has there been any research into metabolism and melanoma? The more I put the puzzle pieces together the more it becomes logical that a failing thyroid could have saved my life.

The longer time goes on and the more I reflect the thyroid issues came on around a time of severe tiredness. I was diagnosed with Narcolepsy with AHI 30 (awoken once every two minutes), I was bradycardic BPM 59, but treatments didn't work and was then correctly found to have Sleep Apnea. That will over time drive down and destroy thyroid function.

All of that is now under control ... I am left still with FAMMM and CDKN2A+ but I just wonder if metabolism can be a key factor in the survival outlook.

What's happening with my holistic medical history that's leading me to be able to tell my story of melanoma with no upstaging (so far over 15 years)?

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Amy0223's picture
Replies 4
Last reply 2/24/2020 - 8:33pm
Replies by: Amy0223, Becky, casagrayson

I was diagnosed with mucosal melanoma of the right hard palate and left soft palate in October of 2019, after having just had my reconstruction from breast cancer. I was cancer free in August 2019. I have lupus and scleroderma, so my oncologist and rheumatologist did not want me to do immunotherapy or radiation. Chemotherapy has not shown to be effective with mucosal melanoma. Surgery was not an option due to the hard and soft palate being involved. I am BRAF negative and C-KIT negative.

I started TVEC injections in my mouth in November 2019. This is the first time my oncologist at the James has tried this procedure in the mouth. I have not found anything anywhere that can give me any information about anyone out there that has had this treatment done in their mouth and the outcome. I have positive changes occuring, but they could not do a sentinel node biopsy due to the location, and the PET scan is not that reliable for detecting lymph nodes in that area. I did not have metastasis to any organs or brain at the time of the PET scan at the end of October.

History: I went to my dentist after my mastectomy with a sore in my mouth in June 2019. She gave me medication for infection. Went back 3 weeks later and it was worse. She sent me to the periodontist, and a few weeks later he said he didn't know what it was and was going to do a biopsy. My rheumatologist instead wanted it performed by a dermatologist. A few weeks later I went to my regular dermatologist who said that the area was too vascular and wanted a surgeon in their office to do it. A few days later I went in and he said the lesion looked vascular and no worries. Did the biopsy. He called me a week later and apologized because he said he only has seen two of these in his entire career, and mine was the second. It was a blow, because I knew how serious and aggressive this cancer is. It had grown significantly between June and October, when I was finally diagnosed.

I am telling this story to help others who may not take a sore in their mouth seriously. I thought I had an infection, as well. Has anybody on this forum had mucosal melanoma and TVEC injections? Thank you!

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jennifer83's picture
Replies 14
Last reply 2/25/2020 - 2:07pm
Replies by: Hukill, jennifer83, tkoss, JudiAU, Edwin, Anonymous

I've finished my four rounds of combo therapy (Nivo/ipi) and had my first nivo only infusion last Saturday - double dose. After my 4 rounds of combo, my scans revealed promising results of tumors shrinking and/or disappearing!

For those who have gone this route, have you experienced any odd side effects switching over to just nivo? Or good side effects? My doc says I'll be doing this infusion every 4 wks for the next 12 months.

Has anyone done combo, gone to just nivo, and then had progression? Of course I'm optimistic, but you know us melanoma patients with re-occurrence are always waiting for the shoe to drop...

Lastly, I did develop hypothyroidism after my third combo treatment and am on medication for it. Every since then, my face (especially eye area) has remained dreadfully swollen and puffy. It looks like I either haven't slept in days or like I've been crying for days. Very self conscious about it since no one knows at work that I'm going through treatment. Doc said this is likely a side effect from the hypothyroidism and that we'll work on my med dosage after a month or two. Wondering if anyone else has experienced this?

Many thanks for everyone's awesome advice and input!!

Jennifer

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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DT1985's picture
Replies 7
Last reply 2/26/2020 - 6:23am

Stage 1b (as of now until we find out what SLNB says Thursday) Nodular melanoma, back of the right leg calf. 1.5mm deep, no known ulceration, but marginal mitosis present.

1. How deep is a standard shave biopsy? If they can determine the 1.5mm depth, I am guessing the total shave would have been deeper than that? For example you can determine something is a foot long if there is only 6in to measure.

2. How deep have you heard of a melanoma growing without lymph node mets? Conversely how shallow have you seen/heard of one with lymph node mets?

3. The 10yr survival rate of a stage 1b melanoma patient (according to the American Cancer Society) is 86%. How is it determined those 14% are not surviving? Is the melanoma coming back in the same spot? Is it a different melanoma that develops? Or are these people in their study dying in other ways?

4. Moving forward after the WLE & SLNB, should everything come back clear, how often should I get checked? Should I have any/every mole removed? (For two years they told me that the mole was ok) Is it only a matter of time before I get another melanoma somewhere else?

5. Should I get a full body scan to check the rest of my body just in case? PET Scan, MRI, CT Scans, etc... I’m paranoid I’m filled with all types of cancers now and have no idea...

Any and all help you folks can provide is greatly appreciated. I hope you’re all doing well and on the road to clean scans.

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fedupnurse67's picture
Replies 7
Last reply 2/26/2020 - 9:49pm

Are there any people on here who have had Melanoma for 15 plus years?

Are there any people on here who have been treated with interferon?

How long have you been surviving with Melanoma?

Just trying to get a few people in my life to understand the seriousness of this diagnosis. Just because I don't act or seem to be "sick" doesn't mean I'm not fighting for my life.

Donna

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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). https://www.youtube.com/watch?v=37ze8NJGFhk

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MelanomaMike's picture
Replies 11
Last reply 2/27/2020 - 12:02am

Hello ya'all, i hope everyones in good spirits & stable. Boy has it been a terrible month for me, i had my surgery Jan 30th, that was a God send as you know, the pain i endured up til then, unbearable!. But, now that that bitch is gone, my Sigmoid tumor (now 5.7cm) seems to wanna rule the roost & be the next bigshot to cause me grief. I almost tapped out last week to go to the ER, cause up till last Wednesday, i hadnt had a decent bowel movement in over 2 weeks, i tried it all and nothing worked, i even bought the gadget "Squatty Potty" (or is it called "Stool Stool" I forget?) for better bowel movement posture. Finally after munchin pounds of apples, pears i finally went a lil bit all thru the day & ever since. By me not going for so long, it caused SEVERE cyatica (spelling?) nerve pain 24-7...ive lost about 11 or 12 lbs. (USA Weight) in under 25 days, i was at 180 now im at 169, it caused me not to want to eat, but i do look Fab-U Luuuus! I can fit into some cool cloths iv had for years that i didnt wear haha..It was all so terrible..That damn tumor is about 2 inches and the Sigmoid area is the smallest "inner" diameter of the colon at just under 1 inch so, do the math, colon walls can only give very little to alow something to pass and my stupid tumor happens to reside in the Lumens area of the colon wall wich is basicly dead center, smack dab in the middle like a golfball stuck in a pipe!(haha), i knew this day would come if meds didnt work. Surgerys an option but, for Palliative care reasons only, and im fine with that BELIEVE you me!. Ill post a separate post of my Pathology Report on that side tumor they dug out, a growing "Necrotic" beast that dished out pain like it was totally living!! (The UnDead?) , very strange but, i dont wanna ruin the report for you, youll see why it grew...Tomorrows my infuse #2, of the ICOS & OX40 all day adventure. I love you guys, we'll make it to the finish line one way or the other.....
Love & Respect,
SOX-10 Mike

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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I had good results with Keytruda for a year...Then, when we saw progression, I also was dealing with internal bleeding and anemia. So Keytruda was stopped. I have been on targeted therapy Braftovi and Mektovi for several months. I saw NED! Very temporarily. Now disease is progressing in both lungs. I have tried all that is available over the 8 years I have been fighting this. My Dr. at Siteman Cancer Center in St. Louis is looking for a clinical trial, but because of side effects I have had he is dubious he can find one. He is considering going back to Keytruda... although bleeding again is a risk. Since it stopped working for me before, is there still a chance it might help me stabilize for awhile? Nervous.

One voice can make a song; one life can change the world.

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