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 4
Last reply 4/16/2015 - 3:30pm
Replies by: Janner, Eric, looptwelve

Hi everyone, 

Recently I was dignosed with melanoma in situ on my right side of back. Had the surgery and margins are all clear. 

Reading my patology report, clinical diagnosis " Atypical Melanocytic Nevous" 

i am not sure what that mens?  My doctor told me its in Situ, very early stage. 

I will ask about that during my next check up. 

I am 33 old white male. 

Thank you. 

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arthurjedi007's picture
Replies 15
Last reply 4/19/2015 - 10:23pm

I have my next scan Monday and my doc is already thinking I should be on his ERK trial. Zelboraf and the taf/mek combo both failed me wih zelboraf having really poor quality of life side affects while I was on the med. So I'm very Leary of these targeted therapies for me. If they had shrank even one tumor I might be less skeptical but they didn't. Yervoy didn't shrink anything either. Only keytruda has done that. So for me at least I don't see how this ERK will be any different. It just targets a gene further up the same chain. Granted I'm glad they have something.

They did say they have had 2 people have partial remission so it does help some people. So am I being stupid to not do this or is there something better for me?

For about 4 weeks I've been feeling great and my LDH has continued to drop to 301. Way better than 840 in January. I can walk non stop for 30 minutes again. Sure I have issues and pains and tire out fairly quickly but nothing like a few months ago before the ton of radiation which I think I've fully recovered from.

I think TIL is a good option since Im strong enough now but I doubt if the scan will show any non radiated tumor they can harvest but it might. They wouldn't do the harvest and store it for later at Bethesda at least not for me when I asked.

i also think pd1 combined with some other med like maybe antilag3 might be good for me. The plan was after this scan if needed to go to dr Gajewski in Chicago to see what he thinks is best for me since he has that trial.

Otherwise I'm not seeing other options for me. Most I'm excluded because I've done standard treatments. Some like the awesome virus treatment in Utah I'm excluded because I have bone metastasis.

So I'm very frustrated about not seeing good options and very worried especially since the nurse called me about this ERK thing today. Same trial they said at my last scan in november. I'm still hoping though the scan Monday shows no new stuff and everything shrinking or staying the same. That would be a first for me and I would stay on keytruda and thank God for such a miracle.

Sorry to bother everyone. I guess the scanxiety is really getting to me especially after that call from the nurse today about ERK.

Artie

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dentholla's picture
Replies 18
Last reply 4/23/2015 - 9:07am

I posted a few weeks ago about my husband being newly diagnosed with melanoma.  He had a shave biopsy that I was not excited about (method) and pathology results that were all pointing to >than what was estimated.  As it stands we received the results back from the SNB and the node (in parotid)  was positive for microscopic melanoma cells.

His melanoma was on his temple, all removed and all told 1.5mm (over twice what the shave said it was) and UT Southwestern thinks the surgeon did appropriate excision of 1cm.  So for that we feel grateful and do not have to do another WLE.

I need some advice guys.  We feel lost, helpless, and while I have been on this forum for weeks now he has not.  We haven't really been able to talk about all of this until today.  We are getting a 2nd opinion next week at Baylor (Dr. Cowler is who our ENT referred us to) and I understand there are some on this forum that are participating in Stage III trials at Baylor.  I'm interested to hear if anyone has feedback on that.  Also, UT Southwestern recommended a PET scan before we proceed with the moderate neck dissection to see if it has spread.  Is this a normal course of action?

Thanks, sorry I'm all over the place.  I honestly don't know if I can catch my breath still.  I am trying to stay positive and let him know this isn't a death sentence and a lot is being done now to treat and prevent reoccurrence.

 

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looptwelve's picture
Replies 5
Last reply 4/16/2015 - 11:10am
Replies by: looptwelve, Jubes, Anonymous, Janner

Hello all,

New here, first diagnosed with in situ melanoma two weeks ago and had it immediately removed. I realize this is probably anxiety and paranoia manifesting itself, or complete coincidence, but since a few days after I got the diagnosis I've had some slight phlegm in my throat, and minor pains and tightness in my chest that is not localized to one spot. Minor pains tend to move to different parts of my chest. No cough present and no shortness of breath.

What I'd like to know is, what are the symptoms of a lung met if they're present?

I realize it's near impossible to get a lung met from an in situ tumor, but I'm going to see a second dermatologist to get a second opinion on some questionable moles that I don't feel like my first dermatologist paid enough attention to.

Sorry if this all sounds like newbie material, but I'm trying to figure out if I'm going crazy or if I have a reason for worry.devil

 

Andrew

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BillyF's picture
Replies 1
Last reply 4/15/2015 - 9:07am
Replies by: BillyF

I was diagnosed with Stage II Malignant Melanoma, Nodular type Breslow 5mm, Clark IV. I went through a one-year treatment with Intron A.  I was treated with interferons to delay the recurrence of malignant melanoma. My treatment consisted of a one-month high dose of 30 MIU five days a week, and 18 MIU three days a week for another 11 months. Like many others on interferon, I did suffer from side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache , fever, and chills.

 

During that time I was terrified and I feel that, without support of my loved ones, I would become depressed.

What was your experience? How did you cope with your fears? I mean, did you stay positive throughout your treatment and how did you achieve that?

 

Billy

 

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guinnessgirl7's picture
Replies 9
Last reply 4/16/2015 - 9:42pm

Hello,

  My primary tumor (abdomen) was diagnosed on April 1, I had an axillary SLNB and wide excision on April 7, and have a PET scan tomorrow after the SNLB returned one positive lymph node.  I have also been recommended for CLND.  I have not met with an oncologist or melanoma specialist to date - I have only dealt with a dermatologist (briefly) and my general surgeon.  Supposed to see oncologist on Thursday after the PET scan.

Does anyone know the clinical difference between a macro vs. a micrometastasis, and if there's a size threshold that delineates the two?  My one positive node contains a melanoma growth that is "approximately 2mm in the largest dimension".   I have seen various descriptions of macro vs micro, most state something about macro being palpable (mine was not) and micro only visible under a microscopic exam.  Seems like there's quite a bit of ground between those two.  At 2mm, that growth would certainly be visible to the naked eye.  But again, it wasn't palpable through the skin. 

The reason for my question is because I don't really know what stage I am (IIIa or IIIb) based on the macro/micro distinction.  Maybe it doesn't matter?  I'm just very detail-oriented and like to have all the facts.  This is all only about 2 weeks old to me, and I have been completely healthy up until now.

I'm currently not in an area with a melanoma specialist, but I am Active Duty Navy and will be moving to the DC area in a few weeks, so I hope to get with a specialist soon!

Thanks for any additional info you can offer re: my question. 

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JerryfromFauq's picture
Replies 4
Last reply 4/20/2015 - 10:09am
Replies by: mary1233, Anonymous, tschmith

I am looking for info on c-kit mucosal melaonma patients responses to Ipi.  Not much info found.  Here is one article.          The overall response rate by irRC in evaluable patients was 6.7% (2 of 30 patients; . By the mWHO criteria, at the time of the first radiographic assessment (approximately week 12), one CR, one PR, and five SD cases were observed. Twenty-three patients had PD at the time of the first scan. One patient classified as irSD was reclassified as having PD by mWHO given the appearance of new lesions. The overall response rate in evaluable patients by mWHO (6.7%, 2 of 30 patients) was identical to the response rate by the irRC.

   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063400/

These numbers are scary.

I'm me, not a statistic. Praying to not be one for years yet.

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Speedster's picture
Replies 9
Last reply 4/22/2015 - 11:22pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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StephyD83's picture
Replies 3
Last reply 4/15/2015 - 9:43am
Replies by: StephyD83, Anonymous, SABKLYN

Hi All-

Thank you for the replys on my previous post. This thing seems to be getting bigger/darker as the days pass. My question is if this is a recurreance would I still only be stage 1?

 

Thanks!

Stephanie

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2015 - 12:46pm
Replies by: Anonymous, Janner

I recently had a WLE and SLNB for stage 1a melanoma, right ankle, and received great results! Everything came back clear with no risdual melanoma from the excision site... But I am still sooooo paranoid. I spend hours every day/night examining all freckles/moles/new spots... Is this normal? 

MMWheart

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RoxAnn's picture
Replies 5
Last reply 4/18/2015 - 6:43pm

I was diagnosed in 1997 with Melanoma, had surgery, had a year of Interferon, horrible stuff as some of you may know. It is now 2015, Melanoma is back again, same leg (on back of right calf), just this time on the front. I had SNB, then had 8 more nodes taken out, oh how painful this is. I am a Veteran, being seen at the James A Haley Hospital in Tampa,Fl.  I spoke to an Oncologist there who has "Interests" in Melanoma, who is from  Moffit Cancer.  First of all, she seems to be "not in a hurry" with me. I recently found out my Mitotic Rate was 20 and found out that is NOT GOOD, I am scared to death. I only saw her for about 5 minutes and she said she has 90 days in which to start some type of treatment, WHAT?!?  I had surgery on the 17th of March and went home the 23rd. Sure I am still in pain, and she told me a while ago, that no matter what I am diagnosed, wait, she said I was diagnosed 3 something, and would let me know if it was a, b, or c after my last surgery, but no matter, my only option of treatment was Interferon again, even if it was a, b, or c. I feel I am being slighted somehow. When I had Melanoma in 1997, I was treated right away. First of all, here is a bit of history. I had my first biopsy way back on the 9th of january, yup, I said january. 2 weeks later, I had another wider biopsy. The BIG surgery was March 17th. Seems to be long drawn out. Is it just me thinking this? Help.

 

RoxAnn

Metastatic Melanoma, Stage IIIc, never giving up Hope!

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StephyD83's picture
Replies 4
Last reply 4/14/2015 - 7:52pm
Replies by: Janner, SABKLYN, Toby0987, arthur

Hi All-

I just noticed a small light brown spot like a freckle (I do not have freckles) appear on my excision scar. Could it just really be a freckle or could it be a recurreance? I currently have only 5mm insuffienct margins on a Stage 1a .4 mm thick on my forehead. What are your thoughts??

 

Thanks!

Stephanie

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Replies by: Marianne quinn, Squash, Anonymous

Hi I was diagnosed in 2013 with stage 3b melanoma that started in my forearm and then blossomed into a 3.3 cm tumor in right armpit.  Mitotic rate was 4. I was whacked and hacked by dr Jacobs at mayo in Rochester mn. I turned down interferon and radiation and just did the surgery.  All the pets have shown a 2cm spot on liver with abnormal uptake and a small spot on my thyroid with abnormal uptake.  Dr McWilliams said not to worry and just to watch it.  They just did another pet and he ordered a fine needle biopsy of my thyroid and it was positive for papillary thyroid cancer.  Sounds like no biggie so I'm going to have alcohol ablation and hopefully that will kill the ptc so I can keep my thyroid.  My question is:  should I request a fine needle biopsy of my liver?  Also would you have them hack  out your thyroid or just alcohol injections.  Kind of makes me nervous about the liver since we waited on the thyroid and only after a fnb do we find out its cancer.  What do you think?

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flaglerjoe's picture
Replies 6
Last reply 4/13/2015 - 4:38pm

After a trip to see a new dermatologist after having a bad experience with another, I was diagnosed with stage 1b melanoma. Today I found out that the tumor removed during the WLE was actually 1.96mm rather than the 0.55 indicated by the punch biopsy. The initial shave biopsy indicated an atypical mole and the punch biopsy showed melanoma 0.55 mm, probably nodular with a mitotic rate of 2. The surgeon did not feel the SLN biopsy was warranted as it was thought to be smaller than 0.75 mm. Hidsight is definitely 20/20 on this one.

Now, I am headed back for a SLN biopsy ASAP. If something is found, I would like to look for an actual melanoma specialist. Does anyone have any recommendations for someone living in Florida? I am young and have two young kids so I want to make sure I get the best possible care if anything further is needed. Other good places to read and learn?

 

thanks!

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Joe.Pro's picture
Replies 15
Last reply 4/16/2015 - 9:48pm

Diagnosed last week with Melanoma on the bottom of my foot after my podiatrist did a punch biopsy on a lesion I've had for approx 18 months.  It was pretty nodular and had started to grow in the last couple of months especially.  

Brain MRI was clear

PET scan showed a lymph node in my groin (which I can feel) as suspicious of cancer.  

Surgery next week to remove the lesion on my foot (along with several toes) and all of the lymph nodes in my groin/pelvis on the affected side of my body.

Here is my question...

i am being treated at Dana Farber in Boston and my onc asked me if I'd like to be in a trial for a specialized vaccine that is made from my specific tumor.  Apparently they take the tissue from the tumor and create this vaccine with the hopes of preventing recurrence. Sounds interesting but since this is a new trial (only 5 or so people so far) the data is very limited (however she did say that mel hasn't returned in any of the enrollee' so far although I didn't ask about time frame) or....

Interferon

Seems like a tough decision, was hoping maybe you guys could help me make it easier?

Thanks so much for your feedback and God Bless each and everyone of you!

Joe

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