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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Steve33's picture
Replies 12
Last reply 4/27/2020 - 10:09pm

I’m stage 3B and began on Opdivo in Dec 2019. The blood test 1 month after first fusion showed my thyroid is producing too much T4F. My oncologist referred me to an endocrinologist who said we might have to switch agents if thyroid level doesn’t come down. Symptoms are loss of weight, rapid heart beating, and constantly feeling “on the edge”. I am on a beta blocker to reduce blood pressure ( I am an otherwise very healthy/fit 33 year old). Has anyone had similar issues with Opdivo? How was it managed?

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doragsda's picture
Replies 15
Last reply 4/27/2020 - 10:24am

I was able to contact Mike's wife. The good part is most of his tumors are shrinking from the clinical trial he's been on.

The less than good news is the tumor in his sigmoid colon continues to grow (it's currently at 7.1cm) and is causing Mike a lot of pain and distress. She said he is really struggling right now.

That is all the news I have, but Mike is still fighting. I told her that he has been an inspiration to so many on this board, and he is often asked about.

Please turn your thoughts and your prayers toward Mike and his wife, Hillary.

Dave

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Megs Melanoma 2nd round's picture
Replies 5
Last reply 4/26/2020 - 8:31pm

Hello, with in the last 48 hours my Jackson pratt drain was removed due to me catching the tube on my bathroom door handle and tearing a suture. Im having fevers (100.7) and pain right above the drain hole. The area is hard when I touch it and I am feeling faint or dizzy. I have contacted my doctors, the on call doctors and have been told to keep taking Tylenol. The tylenol breaks the fever for 4 hours and then it returns. I know in my gut that there is fluid build up and my body is trying to fight it and can't due to not having lymph nodes in the armpit as of 16 days ago. Im also having what looks like Folliculitis and have been prescribed an antibiotic cream Mupirocin 2%. My concern is more the fevers and body aches. Has anyone experienced this after having ANLD?

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Redstar.20's picture
Replies 6
Last reply 4/25/2020 - 11:48am
Replies by: Redstar.20, maryb-z, Bubbles

Hello! So a little background, first diagnosed with malignant melanoma 3yrs ago, came back in January. Habe had surgery and I stage IIB, intransit metastatic recurrence. I started Opdivo infusion March 20th. My oncologist wanted to focus on the sunshine and roses of Opdivo, as most people on Opdivo have little to no side effects. After the first round of treatment, I had rash from chest to face, all over deep tissue itching, exhaustion, muscle aches, swelling in hands and joint pain in hands, at times there was shooting pain down my arms and legs with on and off numbness/tingling, swollen lymph nodes, and hair thinning. All of these side effects were livable, and I treated the symptoms. My best week was the fourth week, the week before my next infusion. At my infusion the oncologist and I decided to try doing a half dose to see if lessened the side effects. About 4.5 hours after completeing infusion number 2 I became very hot, sweating, clammy, shaky, dizzy, headache, nauseous, head spinning. After lying down for about an hour my side effects eased up a bit so I knew I didn't need to go to the ER. The next day I was still experiencing the headache, nausea, dizziness, head spinning so I reached out to the oncall oncologist, and we decided to try treating the symptoms instead of doing prednisone that would cancel the Opdivo effectiveness.
The anti-motion sickness medication helped take the edge off, and I felt better as long as I did very little.
Today I called my primary oncologist to get a prescription for something strong, so I could work etc. My oncologist said she could write a script for the nausea, but she is concerned that if we treating the side effects and continue with the Opdivo, that next time I could have an even worse reaction and that may be we shouldn't go forward with the infusion. I am at a loss. Are there other alternatives to treat the cancer? Has anyone experienced these kinds of reactions on Opdivo?
Could use some advice from experienced cancer warriors.
Thanks

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SarahBug's picture
Replies 1
Last reply 4/24/2020 - 7:00am
Replies by: SarahBug

Hello all, I am new to melanoma, but have had a few BCCs and MOHs procedures in my time. I am seeking your wisdom and experience.

History of this newly diagnosed melanoma:
During full body scan August, 2019. Derm noted unusual pink spot on right forearm, took a photo of it, and said if it's not a "bug bite" and doesn't heal up we'll watch it.
I kept an eye on it all winter: flat, pink, a little patchy, not huge.

Fast forward to March, 2020: Over four weeks it seemed to become pinker, raised now (puffy with a palpable lump), with a distinct and tiny "bug bite" hole at the top of it. Went in last week, derm said it didn't seem to have changed much, but would do a shave biopsy cause she would be really surprised now if it wasn't a BCC or SCC. I said, what if it's a melanoma? Would a shave then not be indicated? She said due to COVID19 situation, and of not wanting me to chance virus exposure coming in for a second treatment visit next week, and because she would bet her life on it being a BCC or SCC she'd go ahead with a shave and then an ED and C (electrodessication and cutterage) to finish it off so I wouldn't have to come back in again. Of course, I said OK (I have seen this derm for 25 years and she's never steered me wrong).
Pathology report:
Clinical Data: A: Morphology: erythematous indurated plaque
Diagnosis: Rt Prox Dorsal Forearm MELANOMA, BRESLOW'S MAXIMUM THICKNESS 0.2MM, TRANSECTED BY A PERIPHERAL EDGE.

SYNOPTIC REPORT
PROCEDURE: BIOPSY, SHAVE
SPECIMEN LATERALITY AND TUMOR SITE: RIGHT PROXIMAL DORSAL FOREARM
GROSS TUMOR SIZE: NOT INDICATED
HISTOLOGIC TYPE: LENTIGO MALIGNA
BRESLOW'S DEPTH: 0.2MM
ULCERATION: PRESENT, BUT LIKELY TRAUMATIC
CLARK'S LEVEL: II
MITOITC RATE: 0/mm SQUARED
MICROSATELLITOSIS: INDETERMINATE
LYPHOVASCULAR INVASION: NOT IDENTIFIED
TUMOR INFILTRATING LYMPHOCYTES: PRESENT, NON-BRISK
REGRESSION: NOT IDENTIFIED
PRECURSOR LESION: NOT IDENTIFIED
PERIPHERAL AND DEEP MARGINS: PERIPHERAL MARGINS INVOLVED, DEEP MARGIN UNIVOLVED
STAGE: pT1a

Multiple levels reveal an elongated specimen which is focally ulcerated and covered by fibrinopurulent crust, associated with dermal collagen degeneration. There is a broad and irregular proliferation of hyperchromatic and pleomorphic melanocytes in a confluent pattern along the junction focally within the papillary dermis at a thickness of 0.2,,. There is severe solar elastosis. There is a patchy lymphohistiocytis infiltrate.

Questions for anyone who can speak to this: Lentigo maligna melanoma is a pretty rare subtype that usually arises from a brown, spreading patch. Mine was small, and pink and did not present typically, hence my dermatologist's shock when she had to call me with the news.

1) Anyone out there with a lentigo maligna melanoma that presented atypically? If so, what was your experience?

1a) Also curious about "Desmoplasic Melanoma" and its association with Lentigo Maligna Melanoma, if you have any experience (as that is an amelanotic presentation...my pink lesion? that has gone undiagnosed???)

2) What does ULCERATION PRESENT, BUT LIKELY TRAUMATIC mean in the scheme of things?

3) Was this able to be staged because the pathologist was able to read the deep margin, even though it was a shave biopsy?

4) Do you think that ED and C treatment after the shave biopsy messed up my clinical path much?

Any and all comments, including your general interpretation, on this path report and your experience will be helpful. Of course, I will be talking with my doc soon, but wanted to get this board's collective wisdom.

Thanks,
Sarah
Scheduled for MOHS surgery, late April.

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BRR's picture
Replies 13
Last reply 4/24/2020 - 5:19am
Replies by: BRR, Bubbles, Anonymous, MelMel

Hello,

My father was diagnosed in february with two lung mets (18mm and 8mm). He had VAT surgery. He is in pain, on scale 8/10. Still didnt recieve any therapy, he is supposed to have a CT in two months starting from today.

I have two questions:

1. Is it normal for him to be in this much pain one month after the VAT procedure?

2. Do you know of any case that a patient had VAT surgery and didnt recieve therapy afterwards?

He is 71 years old.

Thank you
This is so stressful time for all my family.

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MelMel's picture
Replies 2
Last reply 4/23/2020 - 9:14pm
Replies by: MelMel, lkb

Scientists are turning cold melanoma and breast tumors into hot ones using locally delivered interlukin-12.
https://newatlas.com/medical/cancer-treatment-inflames-cold-tumors-immun...
"The researchers put this delivery system to the test in mouse models of aggressive breast cancer and several types of melanoma. After attaching IL-12 to the blood protein, injecting it intravenously and then using it in combination with checkpoint inhibitor therapy, the protein found its way to the tumor and successfully released the drugs, inflaming the tumor and turning it from a cold one into a hot one.
This method worked so well on the breast cancer that it disappeared completely following the treatment, and in the case of the melanomas, caused many of them to regress and lead to prolonged survival of the mice.

“These positive results are in tumors where checkpoint inhibitors normally don’t do anything at all,” says study co-author Jeffrey Hubbell. “We expected this therapy to work well, but just how well it worked was surprising and encouraging.”

A big advantage of the approach was the huge reduction in toxicity, with the targeted technique making the IL-12 therapy two thirds less toxic than it would otherwise be. The researchers will now continue working to reduce this toxicity even further and edge the therapy towards clinical trials.

“Once we have a way to make a cold tumor hot, the possibilities for cancer treatment are endless,” Hubbell says.

The research was published in the journal Nature Biomedical Engineering.

Source: University of Chicago

Hopefully, it especially works on those resistant tumors.

Melanie

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Sdmotorcop's picture
Replies 2
Last reply 4/22/2020 - 5:55pm
Replies by: MelMel, Bubbles

I unfortunately made the jump from 3C to stage 4 last week (mets in my lungs, lymph nodes and the psoas muscle). I had a 4.3mm removed from behind my left knee last april. I had one lymph node that had meI in it and started nivo once a month in June. I had a pet scan in December that came back clear. Only side effects I had from the nivo was fatigue and polymyalgia rheumatica like symptoms (extremely sore shoulders, upper arms and hips). My rheumatologist had me do an mri on the off chance I had joint issues. I’m glad she ordered it, otherwise it would have been another month and a half for my next scan.

My oncologist is gonna start yervoy along with nivo at my next nivo infusion. I’ve read about joint pain / issues while on the yervoy/nivo combo. I guess my question is for anyone who had the joint issues / pain while on the combo. How debilitating was the joint pain? I’m used to the joint pain from the pmr, I’m just wondering how much more the combo will heap on..

Bruce

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Replies by: Beany

Hello everyone,
I feel very frustrated. I am receiving treatment in Japan for lung and liver mets. All was going well with shrinkage until the third cobo of nivi/ipi until liver enzymes spiked. Then after entering hospital they dropped by themselves without steroids as below:
Date AST ALT
4/16 242 557
4/17 174 450

I have been on 35mg of prednisone for three days since 4/17 from midday. Next blood test is tomorrow. Do you think it is possible they will continue to move slowly or might they suddenly drop quickly? The liver doctor here said I cannot leave hospital until they fall below 100. Isn't it a bit over the top making me stay in hospital for 35mg of prednisone?

Regards,
Adam

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MMH's picture
Replies 1
Last reply 4/21/2020 - 7:31pm
Replies by: tedtell1

Having trouble getting through to my derm likely due to pandemic. Had blotch on face earlier this week of concern but that is nothing now that I awoke to a red nodule near my original scar. My original melanoma was a Spitzoid, amelanotic and similar to what I am seeing now although this spot looks more red and nodular to me. As you can tell, I am beside myself. Is it possible to have a nodular melanoma pop up near old site that was not
Nodular? Trying to catch my breath.

MMH

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Beany's picture
Replies 5
Last reply 4/20/2020 - 6:28pm
Replies by: bjeans, Beany, ed williams, Edwin

Hello,
Due to elevated liver enzymes, I had to stop nivo/ipi after three infusion. I am on 35mg of prednisone to bring down the enzymes. My question is did anyone here who had the experience of stopping treatment while on prednisone still achieve tumour shrinkage during this time?
Thanks in advance,
Adam

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Anonymous's picture
Replies 1
Last reply 4/19/2020 - 11:31pm
Replies by: JudiAU

Hello,

I have not currently been diagnosed with melanoma, but I'm waiting on a few biopsies. I'm only 29. Unfortunately as a teen, I I used tanning beds here and there. It was never consistent and I haven't been in one in at least several years, but I know the damage they cause now. I didn't know then.

The most suspicious looking spot on my skin was no bigger than a freckle, but the shape was weird and had two colors. The derm I went to see said she was "okay with watching it", but I had said I didn't know how long it had been there, so she did a punch hole excision. It presented no symptoms. I would say it was no bigger than 2 mm length wise and 1 mm width wise. Seemingly innocuous based on the small size, but I know these things can start out small.

Looking at my left thigh, I also noticed a dark freckle. It is no bigger than a small dot, it's round, but it has a darker brown center and it's lighter aound the edges. I don't like the looks of it and set up an appointment to hopefully get that excised and biopsied as well. The derm that did the first excision said the one on my thigh was nothing to worry about, but I'm stressing. I can't really eat or sleep.

Is it possible to have 2 melanomas at the same time? I have one mildly dysplastic nevus so I know my body makes weird moles, but I don't feel good about this. I currently feel like my life will be ending soon literally and figuratively if I'm diagnosed with this. I don't think I can handle that being 29 years young. I guess I'm looking for feedback/advice. Any help would be appreciated.

Thank.

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jennifer83's picture
Replies 2
Last reply 4/19/2020 - 5:55pm
Replies by: Lucas, tedtell1

Hello all,

Just wanted to give an update. After 4 ipi/nivo infusions, we switched to a double dose of nivo and my vision went to hell. Started seeing double. They managed it with steroids and pulled me off of cancer treatment. Last week, I had a nasty reaction and landed in the ER, then ICU, with a terrible case of diabetic ketoacidosis. My sugar levels were above 600. I had been feeling yucky for about a day and a half. My husband called the doc when he could hardly wake me up any longer. I had no idea what was going on... lost a day or two of memory. They had to put an emergency PIC line in me. And just like that, overnight, I'm a Type 1 Diabetic that is now insulin dependent. What a crazy whirlwind. I was in the hospital five days. They are slowly taking me off of the steroids and I'm learning to be a diabetic with diet, finger pricks, and insulin. They have halted all cancer treatment as my doctor feels that the immunotherapy will continue to work and will just monitor me with scans. i'm nervous, but have seen promising things so I must trust the doc.

I can live with diabetes if I'm cancer free. Currently working from home with this Covid-19 crisis, and I feel lucky to be able to maintain work while going through all this. Checking in on the board often, just have been too busy to message y'all on your posts. Keep fighting the good fight!

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caman's picture
Replies 7
Last reply 4/19/2020 - 10:01am

Hope everyone is doing ok, difficult times to say the least. Well , I'm going get first shot soon. If this drug works what is the average time you see results. First, second or third sessions? Anyone can share their experience or has some knowledge of the effects would be greatly appreciated..

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Replies by: Beany, lkb, Bubbles

Hello everyone,

I will have bloodwork and see the oncologist this Wednesday to see if I can go onto the final infusion of the nivo/ipi combo. I am happy to have done three of these, and an xray has already shown shrinkage of the biggest tumor in my lung.
I kindly received some good stats and links (thanks to Celeste and Ed) about clinical trials of the combo which indicated that even if you don't do all the infusions, the response rates are somewhat similar. Therefore, I was wondering why risk toxicity to do the fourth infusion?
I do want to do number four, but those stats have got me thinking.
Any input welcome.

Thank you,
Adam

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