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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Tset's picture
Replies 7
Last reply 5/3/2018 - 4:23pm
Replies by: Tset, Janner

Hi all. Im freaking out about my biopsy path report. Heres the history. 3 and a half years ago I got diagnosed with a Lentigo Maligna/ Melanoma in situ on my chest. Had a WLE done and all was well. I actually had a dew freckles as I would call them that were close to the scar and one that was really close to scar and it kind of ran over to the scar, basically half of the freckle was on the scar. It was there right after WLE and i assumed since I had alot of feckles that it just got pulled there when the did the surgery. I even took a pic of it a few days after my surgery just to show my mom the scar. Anyway, fast forward to now. Derm removed that same freckle/mole because she thought the color changed just a little. She said she wasnt at all concerned as it is likely normal pigment change. She called me today and told me the news, Recurrent Melanoma in situ. She said it was on the outer most layer of skin and the prognosis was exellent. I have yet to read anything that a recurrance is an exellent prognosis. This is what my path report says.. " In the epidermis, there is a proliferation of atypical melanocytes with occasional nests. Some of the melanocytes extend into the epithelium or hair follicles. There are also areas of fibrosis and scar. Immunohistochemical stains with appropriate controls were performed with SOX-10 and Melan-A. These stains confirm these findings. The neoplasm extends to the lateral margins and reexcision of this lesion to ensure complete removal would be judicious." This was also a deep shave biopsy. I told my derm about this freckle that it was there right after surgery but she doesnt remember seeing it. I have a pic but couldnt find it while in her office and only found it after I left. She said a rogue cancer cell wouldnt grow out of an existing freckle there. She thought this was a new spot from a year or so ago. She never took a pic after my first WLE 3 and a half years ago. What does this mean? Is this from rogue cells that just caused another melanoma in situ? I thought if it was local recurrence that it wouldnt be in situ. It starts making me questons other things like a few years ago i noticed a lump on the outter part of breast. showed my derm who said it was in breast tissue and I should check it out with gyno. Did that and she had me get a mammogram adn ultra sound. mammogram was negative and ultrasound said 2 small intramammary reactive lymph nodes were noted and no follow up neccessary. Then about 5 months ago I noticed a small lump middle way down my quad. Had my derm and GP look at it and both said nothing to worry about, derm said it was small, moveable and felt like a cyst. And now this so it has me freaking out. I was 34 when I first had a meanoma in situ and im now 38. Sorry for the long post.  TSET

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Scooby123's picture
Replies 2
Last reply 5/2/2018 - 2:28pm

Hi all anyone had issues with b12 and low hemoglobin levels when on keydruda. Had my first shot of b12 Monday .
Scooby

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Erica82's picture
Replies 8
Last reply 5/4/2018 - 1:06am

My husband Jon (Stage 4 melanoma diagnosed last spring) has a new lesion on his right kidney and 2 other spots that have increased in size (right deltoid muscle and 8th rib) as shown on PET scan this past Friday.  He developed toxicity to Keytruda last fall so had to discontinue. Our oncologist said he'd probably put him on Yervoy if new spots showed up on this PET. We meet with him tomorrow.  I've heard that side effects  can be pretty rough on Yervoy and just wondered what anybody else's experience has been with it. Keytruda gave him a lot of joint pain and overall fatigue. I'm wondering if side effects from Yervoy will be worse than Keytruda and if we may need to take him out of work. Any insight will be appreciated. Thanks!


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Briannamln9's picture
Replies 6
Last reply 5/1/2018 - 1:07pm
Replies by: Briannamln9, Janner

Hello everyone! About 3 days ago my knee started itching near a mole that has been there for several years. When I scratched it I realized it looked a lot different than it used to. It looks as though it is spreadjng and changing shape. I'm very worried it could be skin cancer as I have extremely fair skin and my mother had a history of skin cancer. I  would go to the doctor but recently changed jobs so I have to wait a certain amount of time before I am eligible for insurance. Can someone please let me Know what they think about this mole? Thank you so much 

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Replies by: betsyl, Bubbles, ed williams

Checking in after a long quiet time. Husband is getting his second-to-last Keytruda infusion today. Fingers crossed! He's been tired and sore lately, so we're hoping they take him off the drug.

One mass still lights up when he get's scanned, but his last few scans show that it's not spreading. The hope is that it's stable and his immune system is going to be able to keep it under control.

Of course, nothing is certain.

The drug doesn't seem to be making much difference anymore, so there's no point in keeping him on it. At least this is what his doctor said during the last visit. We'll see if he changes his mind (again)!

They will continue scanning and watching for changes. If it starts spreading, I'm not sure what they'll try.
Not a good candidate for surgery because the tumor is near the spine.

Living with this uncertainty has made us kind of numb. Surprising what is possible. Humans can get used to almost anything. I guess that's the human spirit.

Warm wishes, strength, and spirit to all of you!

 

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Our Company is walking on May 2 at Sunken Meadow State Park, Smithtown, NY We invite you to join, if you are local to us, there is no fee to park and it is expected to be a beautiful day.  We are donating at least $3,000 to MRF, our goal is to raise awareness, meet us at Field 3 Signature Premier Properties

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Anonymous's picture
Replies 1
Last reply 4/30/2018 - 4:17pm
Replies by: Anonymous

Hi All,

Just wondering why am I getting new moles all the time. I biopsied 4 new moles in one and half years, one junction mole, one mild atypical, one moderate and one severe.  I noticed 4 more popping up in recent 2 months and am still watching them. Is that normal to grow so many moles in a short period? I know it may be normal for my age to develop new moles ( 25years old, Asian with fair skin) but still every time I got paniced when finding a new mole. I wear SPF 60 everyday no matter what. I went to my dermatologist ( Johns Hopkins) last month for regular skin check and pointed a new mole suddenly popping up in the end of January,it was super tiny like 1mm.  he said it looked fine, maybe a little bit atypical but I insisted of taking it out. It turned to be moderate atypical. Should I worry about that? I just don't want to keep biopsy moles since I have had 7 scars on my body so far. Thanks so much.

Best, 

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sofistef's picture
Replies 9
Last reply 5/1/2018 - 8:05pm
Replies by: Mark_DC, Bubbles, BrianP, sofistef, marta010, Anonymous

I used to post  here in the past , unfortunatelly I am back!

In short, dx in 2012 with stage 3a, from a mole that showed up during my second pregnancy and misdiagnosed for over a year. I did couple months on interferon. Im 2013 m was back in right lung, did VATS and got ipp+ nivo. I failed that in 6 months and that left me with adrenal insuficency.  At that time the original tumor came back Braf -.We retested the lung on and it came back BRAF+ Started Tax + Mek  with wonderful results for almost 4 years. Until Friday when MRI showed 2 enchancement leasions. One 0.4 the other one 0.7. CT remains clear . I thought I would be a lucky  long long time responder to the combo, unfortunately that changed and now I'm devastated! 43 year old mom of 2 small children, in need of a new miracle. Taf Mek melted a 12 cm tumor in humerus and lung, and liver and some other various places!! I'm treated at Georgetown by Dr Atkins. Any new promising  treatements at the horizon I am in an acute need of a miracle!

Dana

Macke

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tedtell1's picture
Replies 16
Last reply 5/9/2018 - 10:08am

I crashed this week, 

This past Monday I tried doing the double dose to go to once a month. Within a few hours my usual side effects, extreme weakness and fatigue and body aches came on BUT much worse! I ended up almost fainting in Church on Sunday and had to stay overnight for an IV. I know everyone is different, but have decided it's back to every two weeks for me. Don't think my body can take another one of those without another crash and burn if I don't have to! Good news, no indications that any of this has anything to do with the best coming back, still NED as far as I know.

Ted

Ted

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/30/2018 - 6:51pm
Replies by: betsyl, bjeans, jennunicorn

Does anyone know if trying to diet will affect the opdivo treatment?  Specially trying the low carb diet?

my stomach does sometimes gets upset with treatments

but I’m thinking about the more energy I could get from the no carb diet to counteract the fatigue 

just curious.   Any thoughts?? 

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Ohio mom's picture
Replies 7
Last reply 4/30/2018 - 10:18pm

Hello, I wanted to see what I may expect from my first appointment at the James Center in Columbus Ohio? I have already been diagnosed of having melanoma by my dermatologist, but due to the shave biopsy I don’t know what stage, etc.  Basically any info would be appreciated as to what will take place at my first visit, maybe what I should ask?  Im sorry if I seem repetitive, but as many of you have read my previous posts, I’m very scared and full of anxiety.  Thank you for letting this forum be a source of comfort.

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stevek1959x's picture
Replies 2
Last reply 4/30/2018 - 12:16am
Replies by: Bubbles

So the surgeon called Sunday morning to give me the results from the pathology report from Tuesday's surgery.  Once again, totally impressed with the sense of urgency provided by the surgeon.  My surgeon is totally void of emotions so I never no how to read him (might be a good trait for a doctor since we all seem to hang on every word they say). Level 1 & II lymph nodes had 4 out of 21 that had cancer.  Level III had 1 out of 9.  He said this was consistent with the PET scan and what he had expected.  There is probably lots more that can be pulled once I get the full report.  So I'm thinking cancer is cancer and since I had some floating around in me for 14 years, this doesn't mean squat (glass is half empty).  On the other hand, looks like they got what they could see and it doesn't appear to be "all over" (glass is half full).  So my approach is to suck it up and heal this mess from the dissection (getting the drain tube out will be cause for celebration), meet with the oncologist in a week and get on with some adjuvant treatment, and just maybe, forget about cancer for at least a couple of minutes. 

Regarding the adjuvant treatment, am I correct in assuming NIVO + ipi for adjuvant treatment is not standard or only in trial as first line for stage III?  I'm trying to get up to speed on treatment options in preparation for my upcoming oncology visit. Also reconcile some possible insurance issues.

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jag's picture
Replies 13
Last reply 5/2/2018 - 10:36am

Hello everybody, 

Very sorry that I didn't give myself a shout out for being disease free 10years in March.  I remember how inspiring that used to sound.  My treatments involved biochemotherapy, interleukin 2.  Lung removal surgery and 6 brain surgeries, SRS and patch brain radiation, lots of prayers and a supportive wife.

My philosophy was never give up until you know all of the options are out, and know all of your options in case scans come back with bad news.  I used to get daily google alerts for melanoma survivors and new melanoma therapys to have knowledge and inspiration.  

The other reseource I used was clinicaltrials.gov.  I used to study those expermental therapy's like a Sears toy catalog seeing which trials would apply for me.

Since my last brain surgery, (2010 for getting rid of radiation necrosis) I have started my own housecall veterinary business (with my wife) had a son (Jedd (named after the great Jedd Wolchok)) who will turn 6 on May 5, torn down a house and put a new one in it's place,  

So, to sum it up,  There is life after melanoma survival and just because the chips are down doesn't mean you are out of the game.  When I go to church I often pray for the people who are fighting and their loved ones supporting them and those that have been lost(see I haven't forgotten my peeps).

I wish everybody well.

Best Regards,

John

Insert Generic Inspirational Motto Here

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aziza's picture
Replies 2
Last reply 4/30/2018 - 5:27pm
Replies by: AZSoCal, Bubbles

My mum, aged 78, vaginal melanoma found Jan 2017. Surgery and radiation done april 2017. She is not NED though as surgery cannot have clear margin. 

Found liver metastasis Nov 2017.  Fell with Pembro (Keytruda), 6 infusions. MRI shows progression at liver and bone. Seems Ketruday can't stop the beast. 

Will start Nivo/Ipi next 2 weeks, every 2 weeks.  The doctor said will add Ipi every 6 weeks.  Any side effects I should concern for my mum.  She is very sensitive to any effects, even while having Keytruda.  Thank you you all. Also cheer you all up here.  Love we have this community.

.

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Holliesig's picture
Replies 4
Last reply 4/29/2018 - 10:55pm

We found out that my dads melanoma has spread from 6 Mets to at least 15... we started whole brain radiation yesterday and the doctors have told us that this is to buy a few more months, but that he will not likely come back from this. I’m just curious if any of you have been through this and how long did your loved one have after this kind of progression and how we should handle our potential last months.

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