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
Anonymous
Replies 5
Last reply 12/30/2017 - 6:34pm
Replies by: Janner, ed williams, spiderman, Anonymous

what is the difference between melanoma in situ and stage 1a? In situ cancer cells are only in the epidermis and stage 1a cancer cells have entered the dermis? Is there a radial step 1a? or radial growth is only in situ?

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stacijane's picture
Replies 3
Last reply 12/30/2017 - 4:12pm
Replies by: CancerSpouse, Bubbles, Anonymous

Hi all. I had my first PET since beginning Keytruda (3 treatments down) and results are very encouraging! I currently have one positive lymph node in my right armpit. The node has remained the same size, but shows increased activity, which my oncologist says indicates that the "battle is on" between the melanoma and my immune system. No new spots anywhere! We will continue with keytruda every 3 weeks (#4 is today) and re-scan at the end of February to check progress.

Battle on, warriors!

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PTgal's picture
Replies 8
Last reply 12/30/2017 - 2:33pm
Replies by: spiderman, PTgal, Bubbles, ed williams, Anonymous, Nemesis

I was diagnosed with melanoma last week, and of course I have Googled myself into a frenzy. I am well aware of the masses of outdated information online, especially when it comes to indications for SNB.

The problematic mole had been on the lower right part of my abdomen since high school (I am currently 41.) Over this past summer, I noticed the mole had begun to feel slightly raised and itched occasionally. My doctor felt it was a "dysplastic nevus" and recommended to watch and wait. By early December, the mole was approximately 3/4 inch wide, was constantly itchy, and would become flaky at times. I had an excisional biopsy on December 18th which turned out to be maligninant melanoma.

Details of my pathology report included diagnosis of T1b as well as in situ melanoma with Breslow depth of 1.0 mm, Clark level IV, mitotic rate of 4/mm2, vertical growth phase. No ulceration identified. Lymphovascular involvement indeterminate.

I am scheduled to see a surgeon in two weeks to discuss WLE. My question is should I also advocate for a SNB? There seem to be significant differences of opinion for SNB in "thin" melanomas.

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sister of patient's picture
Replies 6
Last reply 12/30/2017 - 11:15am

Hey folks,

Quick question I hope - my sister is showing signs of pneumonitis and we managed to get into clinic today - her regular onc is off but substitute onc ordered a chest exray only and said it looked fine. Everything I've read on here suggests it's a CT scan used for imaging.

She saw her gp last week for what they believed was just really bad bronchitis and she prescribed two different puffers - the reg. blue one and the orange "rescue" one but there have been several times in the past week where even using both together, at max. dose, she still couldn't get her breath back (it's really alarming to see her like this - sounds like she's being strangled).

The other reason I suspected pneumonitis is because uveitus came on at the same time - extremely blurred vision, black floaters in both eyes and a yellow dot as well in one (she sees them).

The only thing this sub onc did was to tell her to cancel her next nivo infusion and to keep her next app't. with her oncologist (duh!!! - like she would skip it - really!!).

So ... for those that have experienced pneumonitis, I'm wondering how comfortable you might be with that advice ... tho I'm glad the next treatment will be skipped and she'll see her reg. onc. before any further infusions.

Thanks for any light you can shed!!!

Barb

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Anonymous's picture
Replies 10
Last reply 12/29/2017 - 9:15pm

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jennunicorn's picture
Replies 15
Last reply 12/29/2017 - 11:46am

First off: Happy Holidays to my family here! This can be either a really great time of year or a really dreaded one, so I am sending huge virtual hugs to everyone.

 

On to the topic I hate most: insurance companies.

 

When I started my new job in August, I got full health benefits (score!) and all has been great.. until now. I was scheduled to have a PET/CT scan on the Wednesday after Xmas. Last scan was in September and surgery was over a month ago, so I have been looking forward to it to get a nice clean scan to start off the new year officially NED. 

This past week UCSF called to let me know that Aetna has denied coverage of my scan. They will pay for a CT but not a PET. UCSF did their best in telling Aetna that they're a bunch of ignorant people and that I DO need this scan. But, after much back and forth Aetna won't budge. Aetna claimes that PET scans are never needed for follow-up and are not indicated while a patient is not currently undergoing drug treatment. I would like to have a few choice words with the so-called "medical directors" that work for Aetna (and other insurance companies... last year Blue Sheild tried to deny me the Ipi/Nivo combo, thankfully they listened when my oncologist told them they were very very wrong).

So, now I have to wait until January 18th (3 days before my birthday) to get a CT and see my oncologist, one upside to that is I can get that scan and see my oncologist an hour later with the results. (PET/CTs were done at a different location and would have to schedule the appointment for results a few days after)

 

Since I know most of you don't get PET/CT combo scans.... what does your scan schedule look like? How do they know if your lymph nodes are "active" or not? All of my mets have been in lymph nodes, so that is my big worry is will it be obvious in a CT whether a lymph node is slightly larger? According to the Aetna oncology guidelines, they still won't approve a PET if something looks suspicious on CT, they say you have to have tissue samples tested first.. which requires more invasive/uncomfortable/painful procedures (ugh). 

Do others no longer on treatment get PET scans? If so, how often do you get them? Or is this whole no PET scan thing really common and I've just been spoiled with having two scans at once for two years and it's helped pick up on very small things that I don't know if they would have been found until much later. 

 

This is my first Christmas that I don't have to deal with a new cancer diagnosis or a recurrence and infusions and frequent trips to UCSF. As much as I really didn't want to deal with insurance BS right before the holiday, I am grateful for the way life is going at the moment anyway.

 

I hope everyone is spending time with family and loved ones this weekend. Wishing you all a happy holiday and many positive thoughts for a healthier new year!

 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Casitas1's picture
Replies 11
Last reply 12/29/2017 - 11:40am

Well... After lounging in the mri/ct machines for three hours I got some good news. Still NED.  Been a year and a half. Off the juice (Keytruda) 14 months. Knees still a little pissy and aches slowly subsiding. Happy New Year to all. Hoping to hear lots of positive news from everyone in 2018!

Best, Paul

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Sharon93065's picture
Replies 7
Last reply 12/29/2017 - 10:53am

Hi, I have been reading but not posting.  Wanted to wait until i had news of my 3rd Petscan Dec 6h.2nd Petwscan on 9/11 was great.  The 6 tumors were either no longer visible or has really shrank.

3rd Petscan and most recent showed the original 6 still shrunk, but there are two new nodules.

Report reads-(FYI-FDG activity is the serum glucosa that glows where there is tumor activity.)

"1. There appears to be a new mesenteric nodule in the left anterior pararenal space and inferior to the tail the pancreas measuring 1.0cm (.39inch) with mild FDG activity.  There is also a new right anterior abdominal wall nodule density with  mild FDG activity measuring 1.1cm (.43inch) between the 8th and 9th right anterior ribs . The findings are nonspecific and may be concerning for new sites of  metastatic disease.                                                                                                    2. There is interval new mild groundglass opacity in the me dial posterior right lower lung me asuring approximately 1.5cm (.59inch). There is a smaller irregular groundglass opacity in the posterior left lower lobe. The findings are likely compatible with infectious/linflammatory etiology." August 2017 i was scheduled for 4th opdivo/yervoy treatment. Canceled due to high liver panel. Hepatitis D due to treatment. I am finally down to 10mg of Prednisone from 100 i started with in Aug. If numbers stay the same this week ( I have blood tests one or twice a week to monitor ALT/AST) then Fri will be my last dosage of sterioids. And next week i will start my Opdivo maintenance of 1 hr every other week. This is the  maintenance he originally told he I would start after the 4th treatment which i didn't get to have anyways. But would have after the 3rd.   My 2nd Petscan was so encouraging he had said my body could use a rest and no treatments for awhile.  But because of the two new nodules Dr wants me to get started on the maintenance. It's not 100% sure it is cancer but because of my metastatic melanoma history they are treating it as such.  I did test postive to take target therapy but he said not yet.  I am taking 100  mg of thyroid meds each  mornng.  Fatigue is my side effect now.  And brain fog. Yeah finally going to be off Prednisone after 8.10.17!!

I know Opdivo/Yervoy combo works, wondering about just Opdvio as  maintainence? 

Thank you all for your advise and support.

Hoping you all had a nice Christmas and praying for a healthy NED 2018 for all of  you!

Sharon, Simi Valley - 

 

 

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mrsaxde's picture
Replies 3
Last reply 12/29/2017 - 10:16am

Things seem to be moving a little slower than I would like, but I got a call from the nurse at NIH today about getting screened for the TIL trial. She said the doctors there had looked over my scans and information, and they are concerned about whether my thyroid problem will disqualify me, but she said that "it's a very good sign" that they want me to come in for the full screening, which she is trying to set up for January 8 & 9.

I'm not in yet, but this is a great step in the right direction. They kept a close eye on my thyroid at Johns Hopkins, too. In that trial you were ok as long as your thyroid function was under control with medication, which mine has been. Hoping it's the same for this one.

Fingers crossed.

Happy New Year everybody!

-Bill

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/29/2017 - 8:53am
Replies by: Janner, Anonymous

I'm 40 and I got this diagnosis

initial histopathological diagnosis: melanoma in situ VS
melanoma t1a
Antibodies: KI67, HMB 45
results:
KI67 positive in approximately 15% of the melanocytic proliferation nuclei
HMB45 positive intraepidermal melanocytic proliferation
size lesions 5mm, depth 0.6mm
final diagnosis: melanoma in situ radial growth phase , negative margins (tis NxMx)

is melanoma in situ or t1a?

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Analia's picture
Replies 1
Last reply 12/28/2017 - 9:49pm
Replies by: geriakt

Hello forum, I’m new here. The main reason why I’m posting this is because I don’t have health insurance at the moment. Long story short, I’ve always had tons of birthmarks/moles around my body as a child and that number has only grown since being in my twenties. Recently though, I found a black strip going across one of my birthmarks on my arm. I do not recall having this black strip going across my birthmark until now. Is this a sign of skin cancer? I’m very concerned and frightened to find out if it is. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/28/2017 - 6:56pm

When I try to post the banner covers the page.  Anyone else have this happen?

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Dave63's picture
Replies 11
Last reply 12/28/2017 - 3:00am

I had a WLE to remove melanoma and plastic surgeon used dissolvable stitches under and on top of incision. This was 3 weeks ago.  The scar has started leaking a pink fluid and internal stitches are coming through. I pulled on what I thought was a scab and 2 inches of stitches came out. It seems like the surface healed up ok but it feels like there is a big hole under the skin. Is this normal?  I have never had this done but it seems like the stitches under the skin didn’t hold. I had BCC removed from my face on the same day and was stitched up the same way and it healed fine.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/27/2017 - 9:32pm
Replies by: TexMelanomex

What do lymph nodes with melanoma feel like? Hard? Immovable? Or do they usually move? How big is bad? Thanks!!

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Totally Blessed's picture
Replies 7
Last reply 12/27/2017 - 5:21pm
Replies by: ed williams, Anonymous, Totally Blessed, Janner

My husband is considered stage 1a today, no lymph node  involvement when diagnosed with nodular Melanoma back in 2015. Just recently we noticed a new mole, in the same general area of the previous melanoma (shoulder). We've also just recently moved and are now in the process of getting new doctors. His new primary noticed the mole too and said it needed to be checked further by a dermatologist due to its asymmetrical look and that it's quite dark in places  - apt all set. My question is this, is there a chance this could be melanoma from the original Melanoma even though lymph nodes were and not involved previously? What are the chances this could be melanoma? My head is spinning! He's been keeping up with  his dermatologist apts, every 4 months. This is a very new mole. 

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