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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Marymary's picture
Replies 4
Last reply 6/22/2017 - 3:33pm

Hello...

i had a .4mm melenoma removed in January. My treatment plan is to be checked by my derm every 3 months.

i understand that I caught my melenoma early.. but can I really just "cut it out" and move on? 

Should I be switching to a specialist now that I've had melenoma? I live close to Tampa.. should/ can I go to the cancer center there? 

i just want to make sure I'm doing everything I need to be doing. I'm not a fan of being told "standard care" , I want to make sure I'm being my own advocate and doing everything possible.

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Julie in SoCal's picture
Replies 10
Last reply 6/24/2017 - 6:44pm

Greetings Friends!

We have a plan!!! And it's a good one!

Next Tues afternoon I will start my first (of four) rounds of a chemo combo (carboplatin and pemetrexed). The thinking is that this is the treatment that makes treating two cancers (Melanoma and NSCLung Cancer) comparatively simple. It's quick (only 12 weeks) and very well known. After being in the land of amazing new medicine (I'm talking to you Ipi and Pembro!!), it is strangely comforting, knowing that there shouldn't be any mystery side effects to deal with. After chemo I will start 35 or so sessions of radiation. Then Larry the lung cancer will have been cut, poisoned, and burned!

This is my first trip into the chemo-beamo world and while I like the "known" aspects of it, I'm not really wild on those known things happening to me.  I know I'll be fine. I have an amazing team and am surrounded by crazy friends and crazier family.  So I'll be very well supported.  But I'm still a bit apprehensive. And of course, I may (or may not) get to keep my hair.  

This has been one long, scary roller coaster ride and I've hated waiting to figure things out. But this waiting time has given me opportunity to think and pray about what I want in treatment. It's easy to say that I want to be cured (and my 23 year old body back as a side effect). But it's much harder to figure out what I'm potentially willing to give up. This extended time has helped me figure this out. And I'm so grateful.

Thanks for coming along with me on this long, scary ride.

Shalom,

Julie

Stage 3  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017) 2017 Non-small cell lung cancer VATs

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MovingOn's picture
Replies 1
Last reply 6/21/2017 - 6:57pm
Replies by: Julie in SoCal

I'm taking this PET scan as a success (but I'll be looking for the clavicle thing to disappear in the next scan).

Results statement:

"When compared to prior examination, the activity identified in the left neck, region II has resolved.

There was a mild focal area of activity seen in the region of the left proximal clavicle with no correlate on CT imaging and may represent some mild arthritic change."

Diagnosed Jan 2017 (stage 3b with unknown primary). CLND and Submandibular gland Surgery Feb 2017. Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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dhwriter's picture
Replies 2
Last reply 6/24/2017 - 7:08pm
Replies by: dhwriter, Janner

I had my followup with the nurse practitioner today about excision of a biopsied moderate atypical mole. Here is the pathology report:

MODERATELY DYSPLATIC COMPOUND MELANOCYTIC, EXTENDING TO THE PERIPHERAL EDGE

Gross Description: The specimen received in formalin labeled with patient's name and as "lower back left of midline" consists of skin measuring 0.5 x 0.5 x 0.1 cm. ES, 2y / 1bs

Microscopic Description:

Sections demonstrate skin with single cells and nests of moderately atypical melanocytes which bridge adjacent rete ridges. Within the dermis there is papillary dermal fibroplasia and an inflammatory host response. A dermal component of the nevus is present.

Based on the report I was okay with a conservative excision. However the NP said she would be doing a WLE with 4mm margins. I decided to go with a 3 month observation of the area to see if anything recurs and then go from there. The mole was biopsied because it was offered by the NP, not because of any issues with mole. Had it since I was early 20s, possibly late teens, 34 now. No history of melanoma, family or otherwise.

A 4mm margin WLE felt excessive, but she said it was standard for a 5x5mm biopsy. Does this sound right? I've read a small conservative excision should be enough.

The NP seemed perfectly okay with observation. I'm just confused and a bundle of nerves.

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Bubbles's picture
Replies 2
Last reply 6/22/2017 - 11:19am
Replies by: Bubbles, Ed Williams

Sorry for 2 days of radio silence.  2 long work days happened!  But here's the latest:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-ipi-plus-pembro-ipi-after.html

Hopefully just 3 more ASCO posts to go!  Gotta get her done before the end of June!!  Luck and love to you all. celeste

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Scooby123's picture
Replies 5
Last reply 6/21/2017 - 4:48pm

Hi all hope you all as well as can be. I am going Friday for my biopsy in nodes in chest wall. I would apprciate any one who has had it done there experience. They are going to put tube through mouth in to chest wall to get biopsy.

feeling nervous. 

Scooby x

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/21/2017 - 10:24am
Replies by: Scooby123, SABKLYN, Anonymous, NSNewf

I am currently 3a declared NED following negative path and PET in March. I had a functional neck dissection done on my left side and was declared NED. I noticed a swollen node on my right side just below my ear. I had followup with Dermatologist yesterday and he did not seem concerned. My next appointment is with ENT in October. Should Ilook to get into ENT early?  Do you think this is an area of concern?

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cammeronwall's picture
Replies 1
Last reply 6/21/2017 - 8:03am
Replies by: SABKLYN

Hi! We have an all clear on NO melanoma in my eyes. We were sent to an ocular surgeon today. So that's good news. Thursday we visit an oncology surgeon to discuss a SLND and wide excision. Friday- we have an appointment to do the same at Emory in Atlanta Ga with a well known surgeon and then next Thursday one of his partners will see me. She's a melanoma specialist. Having said all that, should we go ahead Thursday IF the surgeon says he wants to go ahead and do the SLNB and WE  or wait until we've spoken with the second surgeon? 

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Shaneswife's picture
Replies 9
Last reply 6/24/2017 - 5:58pm

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lesleynunn's picture
Replies 7
Last reply 6/24/2017 - 6:01pm

This forum has been a tremendous rescource for me, thank you to all who contribute!

My father, age 59, was diagnosed with Stage IV melanoma on April 14th.  Brain mets x6 was the first area found, 1wk later spinal mets were found.  He had an emergency craniotomy, 2 lesions removed, has done gamma knife x1, 12 rounds of IMRT on brain and spine.  He has had 2 opdivo infusions.  F/u MRI showed remarkable improvement in brain, 1 new lesion,  they scheduled him for another gamma knife.  Spinal lesions were smaller as well.  He continues to have bowel and bladder dysfunction.  He is walking unassisted but has pain and weakness in right leg.  

No primary site has been found, he is BRAF neg.

We are not specifically seeing a melanoma specialist, however I have been pleased with the care he has recieved thus far.  I just wanted to "compare notes" and make sure we are doing all we can.  If anyone has any suggestions as to questions I should ask his team of doctors, or treatment recommendations, I greatly appreciate any thoughts/experiences/recommendations you are willing to share.  I have read some about leptomeningeal metastasis, mostly bad, but his doctors seem hopeful.  

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adrianc's picture
Replies 1
Last reply 6/26/2017 - 3:17am
Replies by: pharmasmruti

Since upon office visits the NP's always keeps track on the medicines and supplements take,I thought it would be useful to post the list of the supplements I am taking on a daily basis:

Turmeric 500 mg

Echinacea 760 mg

Vitaminn D3 3x2000 IU

Vitamin C /preferably from fresh squeezed lemons rather  than the pill formula/

 I know the turmeric's  health benefetis had been discussed  multipletimes  on this forum. Whilst there is no proven scientific evidence it prevents or even cures cancer as implied by studies, it's a powerfull anti-cancerogen  that greatly boosts the  immune system .There was actually conducted  research on the cancer rates in India where turmeric, chilli, corriander,curry,cumin,cinnamon are commonly used in their menu .The research  found that the cancer rates in India are four times less than those in the developed countries.I always try to include these powerful anti-oxidants in my menu when possible,  even though my stomach is sensitive to spices.I thought it was worth mentioning that I have been taking Turmeric every day for the last 7 years.

I hope that helps,

Have a good day everyone

Teodora Chasse

/Reposting due to inadvertenly posting as anonymous the first time,sorry/

 

 

 

 

T.Chasse

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Marymary's picture
Replies 1
Last reply 6/19/2017 - 10:19pm
Replies by: jennunicorn

Hello all! 

So I got the call in November that I had a .4mm malignant melenoma on my back. I had it removed with a. Wide excision in December. Since December I've had two atypical moles removed and one shaved. 

My current treatment plan is to see my dr every 3 months and sun protection. That's it! 

So my first question is.. is that it? Should I be doing more? This melenoma has caused me so much anxiety and stress over dying. I feel like I'm turning into a complete hypocondriac nut! I have three children under 10.. I can tell help it. I want to be here. 

my next questions have to do with geography and sun protection . I live in Florida:( So obviously the sun is always around! Which means constant sun protection is needed, right? Are normal long sleeved pants and shirts enough or does my entire wardrobe need to be spf? And how long does spf clothing last and maintain its protection? 

Are my chances of more melenoma higher if I remain in Florida? I stress everyday about the sun. Plus I'm worried about my kids future health. 

what about sunscreen? What sunscreen should I be using?! What about the chemicals that are suppose to cause cancer? 

well that was a lot! Sorry but not sorry.. I don't feel like drs give us enough information.. not enough info about the stupid disease and not enough info on how to live after.

 

appreciate any help you can give me:) 

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Christine.P's picture
Replies 8
Last reply 6/20/2017 - 3:38pm

I started the Taf/Mek combo two weeks ago today and did fine as far as side effects the first 10 days or so. Starting just last Saturday, I was clobbered with fevers, joint pain, muscle aches, headaches, and fatigue. I was sort of expecting these, but was told that if my fever hit 100.4 or above, I should call the doctors. 

Well, my fever hit 101.6 Sunday night, so I called the cancer center today. The only NP they could get me in to see was the same one who ignored my symptoms for pneumonia when I was on the ipi/nivo combo and I was not happy about having to see her today. While I was in their office, my fever spiked at 103.1. 

She basically said these are the side effects and she called for a CBC and sent me home. I said, well, I thought that I was supposed to call if my fever hit 100.4 because there was risk of infection. She said, yeah, call us back on Thursday if it's not better. 

I am just wondering how much of a fuss, if any, I should be making about this. The phlebotomist who drew my blood for the CBC couldn't believe the NP didn't ask for blood cultures to check for infection, so the phlebotomist pulled them anyway. Who knows if the NP will let the test be run or not. She's not very good at being told she's made a mistake.

So, I am at home, taking my Tylenol and just wondering what you all think of this situation. I need to go back to bed, but will check in later. Many thanks for your help.

Chris

Christine P. 

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Mommyto2's picture
Replies 12
Last reply 6/21/2017 - 5:36pm
Replies by: Anonymous, Mommyto2, coltbnme

Hello all, I read a lot on this site after my biopsy, and I received the bad news of cancer on 6/16/17. I ignored a new mole for about 5 years. Very dumb, I know. When the mole started changing in appearance, I got it biopsied. Now I'm losing my mind, I can't stop thinking about my children and the effect this will have on our family. I will post what my path report said in hopes that some of you kind souls will interpret for me. All I know is that, yes it is melanoma, and I have an appointment scheduled for 6/30 for a wide local excision and snlb. Path report :
SKIN, UPPER BACK, LEFT SHAVE BIOPSY
- INVASIVE MALIGNANT MELANOMA
SUMMARY:
HISTOLIGIC TYPE: NODULAR MELANOMA
MAXIMUM TUMOR THICKNESS: 0.96 MM
ANATOMIC LEVEL: IV
ULCERATION: NOT IDENTIFIED
MITOTIC RATE: 5 MITOTIC FIGURES PER SQUARE MM
STAGE: pT1b
This was a shave biopsy, please help interpret this for me. I'm losing it and everything I try to research is just making me more confused. Thanks in advance.

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