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 7
Last reply 3/14/2019 - 12:34am
Replies by: Socks, doragsda, Brian j, Johnjk04, ed williams, Anonymous

When glyphosate reacts in the skin along with nitrous acid the metabolites NNG contributes to skin melanomas. Other chemicals are added to Monsanto’s Roundup to increase its effectiveness such as the surfactant POEA (polyethoxylated tallow amine), which also increases its toxicity.

 

https://www.globalresearch.ca/monsantos-sealed-documents-reveal-the-trut...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Socks's picture
Replies 8
Last reply 3/13/2019 - 9:43pm

I'm going to be starting ipi/nivo soon, and I wanted to ask the experts about what I could expect. I've read a lot about what to expect after my infusions (side effects and such, especially fatigue), but are there tips and tricks for before/during? 

Like, for example, are there certain things I should/shouldn't eat or drink before an infusion? Is it better on an empty stomach or a full one or somewhere in between? I was planning on reading, maybe playing some tablet games while I'm getting infused; did you find other activities better for some reason? Do you feel better afterwards if you just nap through it?

Does exercising on the days you're not being infused help? (I mean, I know it'd help my overall health, but does it feel like it makes infusion days better/easier or help stave off/ease symptoms afterwards in some way?) Are there particular exercises or activities that you've found especially useful (yoga, mediation, cardio, weight lifting, whatever)? 

Does listening to music during infusions help? Obviously drinking water beforehand helps them find veins, but any other tips to make the process go smoother? I assume comfortable clothes are a must. Do you tend to get cold during infusions? Are you allowed to drink or eat anything while you're being infused? 

Is there anything you know now that you wish you'd known before you started ipi/nivo?

Thanks for any help you can give. ^_^

"Be who you are and be that well." - Saint Frances de Sales

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/13/2019 - 10:20pm
Replies by: SOLE, Edwin, cancersnewnormal, Perramas, Anonymous, Bubbles

Help I am a soon to be 49 year old white male, I have a black spot on my left big toenail and some yellowing of the nail. I don't know how long it has been this way I first noticed it about three weeks ago. There is no pain or drainage but it appears there is a red spot close to where the nail grows from the toe and it appears the skin might be getting discolored as well.

 

https://imgur.com/a/Poawc0N

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KellyH's picture
Replies 2
Last reply 3/13/2019 - 9:37am
Replies by: Linny, kst

Hi everyone!!  

My son has 5 more Opdivo treatments to complete his one year of adjuvant therapy for Stage 3b....we have been counting down the treatments but as it gets closer I find myself getting so nervous about completing treatment.  It will be a very bittersweet milestone for me....my son can’t wait to be finished, he’s 18 now and ready to move on from this whole thing. I on the other hand am having such anxiety...at least with treatment I felt like we were actively doing something to fight this monster off. 

6 months into his treatment he had CT scans of his brain, his neck and his chest and abdomen...all clear. His primary site was on his scalp. We are going to have repeat scans again in May.  

i am just wondering  how often everyone went or is going  for scans upon completion of adjuvant therapy for similar staging. I know adjuvant therapy is relatively new for Stage 3....I’m thinking when we aren’t treating i would like scans every 3 months for at least a year, just not sure insurance will agree with me.  

Kelly :) 

 

A Melanoma mom ❤️

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ashleyhs's picture
Replies 5
Last reply 3/13/2019 - 12:13pm

Hi all:

This is my first post in this group.  I was diagnosed on 3/7/19 with invasive malignant melanoma, currently assessed at Stage II a/b. I only received my pathology report today (after harassing the Dr's office) and my consult with the surgical oncologist is tomorrow. I'm sure everyone on this board underastands the complete whirlwind of gettng a diagnosis and trying to take in and process a lot of information in a short time.  I want to be as prepare as possible so I can advocate for myself.  I haven't had a long time to study my pathology report, so I'm hoping someone who is farther along in the process can provide guidance.  The pathology reports are as follows:

Left Arm:  invasive malignant melanoma, ulcerated (focally present), Breslow depth 2.0 mm, Clark's level IV, extending to one lateral margin. Miotic rate:  1-2 per sq mm (approx). Lymphocapillary invasion, satelitosis, and perinerual invasion not identified.  Lymphocytic inflitrate:  non brisk. 

I understand what all of this means as far as understanding the terms, but am trying to put it all together as far as prognosis and treatment options.  From the research I've been able to do so far, it looks like ulceration  is "bad" and can be a risk factor for a higher rate of recurrance, and the miotic rate is also of concern.  I see some conflictign infomation on the miotic rate, with some sources sayign anything above 1 is concerning and there's no statistically important difference above 1, and other sources break it  down into low, medium, high miotic rate. 

Obviously, the results of the SLN biopsy may change things, but assuming it is clear and I remain in Stage II, should I still be looking at and considering treatment beyond wide excision and SLN biopsy?  It looks like Stage II is commonly addressed with only the biopsy and excision, but would the ulceration and miotic rate indicate the need for more? Should I request genomic testing?  

I will definitely listen to the doctor's advice, but also want to be prepared so I can have an informed conversation. Sorry I'm missing parts of the puzzle with these questios, but like I said, it's a lot to process in a few days. 

Thanks,

Ashley

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ourvan's picture
Replies 2
Last reply 3/13/2019 - 8:38am
Replies by: ourvan, Bubbles

Good afternoon my new warrior friends,

Almost a year ago I was diagnosed with melanoma on my right shin, and had a wide excision with sentinal lymph node biopsy - right groin.  Diagnosis info is "superficial spreading melanoma, Breslow depth 1.2 mm, Clark level IV, mitotic rate 1, T2aN0M0".   Following the surgery I was advised that the margins were clear and there was no sign of spreading to the lymph nodes (3 removed).

At my recent one year check up with the surgeon, we discussed a lump that I could feel where the SLNB had been performed.  Because of my history he sent me for an ultrasound of my groin, and following these results he has now scheduled me for a biopsy with an interventional radiologist, but my appointment isn't until 4/1/19.  As you all know too well, I'm fearing the worst and can't imagine my heart rate slowing any time in the next month (if ever again). 

The narrative from my ultrasound reads as follows:

"In the right groin at the area of interest there is a heterogeneous nodule measuring 3.3 x 1.9 x 2.4 cm with central cystic components as well as increased color flow.  Possibility of partially necrotic lymph node could be considered.  CT could be obtained for further evaluation".  (My doctor is skipping the CT and going right to biopsy)

Plucking words and phrases to Google leaves me thinking it can't be anything benign - does anyone have any experience with lymph node issues following surgery and/or know what I might expect?

Thank you for your guidance~

laurie

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Marie1972's picture
Replies 2
Last reply 3/13/2019 - 12:26pm
Replies by: Linny, cancersnewnormal

Hi. I hope it is okay to ask here. Does anyone have any recommendations for spf 30+ sunscreen in bulk? I am looking for something for my husband and kids to use daily. We will probably going through a fair share of it with three kids and two adults and the store bought ones seems to only come in small amounts for a hefty price. 

Marie

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/13/2019 - 10:20am

Hello everyone, 

I will be facilitating a support group for OM patients and was wondering if anyone had ideas of topics they feel would be beneficial to cover. I'm considering topics such as: mindful self compassion, stress and stress management, coping with anxeity, etc. But I am more than open to any suggestions, as I want it to be well worth the time of the participants in the group. 

 

Thank you! 

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Sarahprince22's picture
Replies 11
Last reply 3/13/2019 - 9:50pm

Just returned from my consultation with the surgeon. He is just a general surgeon and is really applying pressure to me to just have my melanoma removed in his office with local anesthesia. I’ve had this surgery before and I know what size chunk they take... my anxiety is OFF THE CHARTS about being awake during something like this. Path report says it’s in situ, but I’ve not been able to see it for myself. I don’t know any numbers.  Also when I asked him “how much will you take” he basically said that he just ‘eyeballs it’... I said don’t you base it from the depth of the lesion and he said no.  I don’t feel confident about this at all. My Family is pressuring me to have it done in-office to save money.  Any advice? 

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Nympha's picture
Replies 0

Dear Zoe, I have tried to contact you, but with no success. I know that e-mails sent through the forum ussualy end in spam. Hope to hear from you soon.
Veronika

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Nympha's picture
Replies 4
Last reply 3/12/2019 - 4:14pm

Hello everybody.
I don't really know why I writte here...
I know there were a lot of comments to Taf/Mek treatment. I am just desperate seeking some positive energy to have the power to continue supporting my father..
He is IV stage now, with big pain.. Lying on morphine in hospital now. His skin on tummy is full of tumors. One tenis ball size, one golf ball size, and many of painful metastases balls.. Really horrible to see that...
He is after 6 rounds of keytruda treatment, with no results.. Today.. It's his first day of Tafinlar/Mekinist therapy.. And somewhere deep inside I know it's our last chance..
He can't sit, walk.. Due to big pain of tumors.. Hope this will finally help to shrink these painful tumors..

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MarkR's picture
Replies 7
Last reply 3/12/2019 - 3:36pm

After a short delay getting insurance sorted I started Infusion 1 of round 2 of Nivo today.  I will be on the 4 week cycle of 480mg.

Lots of talk about side effects and due to my previous hepatitis I will be going back for weekly blood tests until they are happy the liver is doing ok.

CT scans in 11 weeks that I’m not looking forward to but optimistic for some good results!!

best wishes to everyone else in the fight

Mark

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2019 - 2:56pm

My husband was just diagnosed with Melanoma from the dermatology clinic. The initial lab report says:

Biopsy:Malignant Melanoma, invasive. Microscopic tumor type: superficial spreading Breslow thickness:1.9mm Clack level:IV ulceration:Present focally Margin:Deep and peripheral margins involved Mitotic index:3 mitoses/mm2 vasular invasion:not dected Regression: not detected tumor infiltrating lymphocytes:Brisk Pathologic statging(pTBM);pT2b OIT/03/05/2019

 

Am I to undertstand this is already at stage 2b? And does that mean mean that it is just 1.9mm thick or does it mean it could be more or because the peripheral margins are involved?  This biopsy was taken at a ZOOM care office on the first visit for a suspicious looking mole. The appointment was 15 minutes and The nurse practioner that saw him and did his biopsy and informed him over the phone a week later that he had melanoma, I don't think she  is very experienced. She said she hasn't been able to get a hold of the head doctor to give him a referral to seen at oncology for a wide excision and SNB. From what I understand time is of the essense with melonoma. As of this morning oncology has still not recieved any referral. I have made phone calls this morning to try to get things moving this morning for a referral.

My husband just turned 40 and I am really trying to wrap my head around what we are facing here. I know we will know more after the SNB, but at this point am I wondering if I need to show up at this doctors office with my three children and not leave until they have put in the referral and if I am understanding this initial biopsy correctly. Thank you for your help.

Marie

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Charlie S's picture
Replies 5
Last reply 3/15/2019 - 8:18am

Quick history.   Dx'd 1987 Stage III unknown primary first appearing as a lump in armpit which  turned out to be hot lymph nodes.  Big surgery.  Fooled around with Lax cell therapy in clinical trials.

Then silence for nine years until 1996 and had new lumps, more surgery,  did a year of Interferon, held for a year then was Stage IV , long story short 12 years of recurrence , about that many surgeries and around 60 some infusions of IL2 in addition to the 144 of Inteferon and 12 years later in 2008 had my last surgery for Melanoma.

In between all of that I met a lady from this board, Kim Hanley, who was from Iowa and although I was from North Carolina we became starstruck.  She was Stage III and finishing up Interferon.

Kim died in my arms in 2006 due to complications of melanoma..

Right after she died, one of my best  friends of more than  20 some years emailed me with a pathology report that he wanted me to help him with:  Stage 2AMelanoma  it turned out and he had surgery that took big margins..  Melanoma laid in quiet.

Eleven years later in 2017 my friend had what he thought was a ingrown hair dx'd as melanoma.  He had nine rounds of radiation.

Now, in 2019, just two days ago  had a scan and is hospice with mets in his liver, both lungs, spine, neck and brain with a maybe three to four week  life expectancy.

What really troubles me in all of this is some years ago I openly declared, taunted and challenged on this board for melanoma to give me it's best shot.

It never ooccured to me at the time it would go after my friends.

I hate this disease; it has haunted me and hovered over me for thirty two years and even though it is not in my body it is still so much in my heart, mind , soul and very essence.

Sigh

Charlie S

 

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/11/2019 - 9:23pm
Replies by: Mark_DC, Nympha, Bubbles

No change in tumors under my arm. How often does keytruda not work.

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