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.

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Interesting article on some research Dr. Luke is doing.  Thought Celeste, Ed and some others might find it interesting.

http://www.medpagetoday.com/reading-room/asco/melanoma/63360

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/27/2017 - 11:06pm
Replies by: brendon, Jon M

Hi All;

 

I am familiar with Jenn Unicorn (thanks for your posts!) 

Anyone else out there decide to do a 'watch and wait' instead of the groin dissection? 

If so, how are you? What was your first dignosis (thickness, ulceration, etc.) and have you reoccured? If so, when/where? Age range? 

I have previously done some crowd sourcing here on this topic without much response. Hoping everyone is out living life!

 

 

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Sunday, April 23rd, 2017
Where: Wilson Farm Park, 500 Lee Rd, Wayne, PA
What: Walk, 5K run, Kids Dash, Health Wellness Expo, FREE Skin Screening, Raffle
Time: 9:00 am, race begins 10:30 am

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/27/2017 - 3:26pm
Replies by: Anonymous, UBContributor

Hi, 
I am sorry if this is not the proper place to post this.  But I am really concerned.  I have a family history on my mothers side of Melanoma.  I also have genetic markers for Melanoma.  I do not have a diagnosis for Melanoma.  But... 

I had/have several areas that have changed and or are itching.  So I went to a Dermatologist.  He was very concerned over 4 of them but decided to biopsy 2 of them and wait for those results.  No problem.  

He performed 2 shave biopsies.  One on my back that was the most concerning to him and one on my leg.  I waited the 24 hours to remove the bandages and noticed a very dark center of remaining pigment in the one on my back.  I researched the internet as the office was closed for the weekend at the time.  Of course your mind takes you where you do not want to go.  I found myself on this site reading many stories and hoping I would have a non-melanoma story to tell.

The biopsy came back non cancer on both.  The leg one is classic benign mole. But the one on my back is a little different.  Don't get me wrong,  I am relieved but not unconcerned because in my mind, there is a portion that was not removed.  

Compound Melanocytic Nevus
Shave biopsy of skin showing an undulating epidermis. Occasional nests of melanocytes are noted along the dermal/epidermal junction absent of atypia. Nests of interstitial nevomelanocytes are noted in the underlying dermis, absent of cytologic and nuclear atypia.  

So, I went for a follow up with my dr. today.  I showed him all my pictures.  He claims he always gets all of it and that he would never leave any portion of it behind so it is impossible that this is pigment.  I asked him detailed questions.  He did get a little defensive and his response was that it was a little scab or blood.  It is absolutely not. I confirmed that he did not use silver nitrate. He said that he reviewed the slides and that they were perfect as a normal mole.  He said that there was nothing anywhere but where the lesion was located which matches  the pathology report on my leg.   (He also now says the other 2 are fine. He was worried about all 4 last time.)

This is where I lost all faith and confidence in what he said.  I believe he was referring to the leg slides if he even looked at any.  Nice enough guy, don't get me wrong.

My most important questions were;  
If this pigment remains, can it become a melanoma?  
If it becomes melanoma, how will I know?
If you didn't remove all of it, how do we know that it is normal throughout?

I do not want cancer.  But I do not want to be one that comes back a year from now and they say, oops, either. I don't want to have something left behind that could become melanoma either.  I have a family history of melanoma and I have genetic markers for increased risks as well. So this is in the back of my mind.  I have found that Dr.'s who claim they "Never" or "Always" do something are frequently wrong and unable to admit it.

So, what do I do?  
Do I accept that this is not a concern and let it go until I have reason to believe otherwise?  
Or do I seek another opinion?  
Do I push for further biopsy of the remaining pigment from another dr?

Pre biopsy
http://i32.photobucket.com/albums/d13/kjmcooper1/prebiopsy_zps7xutkhp7.jpg

24hrs
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy1_zpsuxjmg2hb.jpg

72 hrs
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy2_zpsbaoukfpy.jpg

1 week
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy10days_zps9p9js1b...

today
http://i32.photobucket.com/albums/d13/kjmcooper1/6002a0b3-97e9-4be5-95ec...

For Reference the was my leg biopsy site. So I know the difference between blood/clot and pigment. 
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy%20leg_zps1aypsia...

Any advice would be greatly appreciated. 

 

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km_may's picture
Replies 2
Last reply 2/27/2017 - 4:52pm
Replies by: Anonymous

Hello everyone, I was recently diagnosed last week and was looking for some help with my pathology results. I have done some research online, but would love your opinions. I am 30 years old and we lost my Dad to cancer (not skin) 4 months ago. It has been very hard on us, and having to tell my family this is going to be awful. I guess I am hoping for some positive news because I have a lot of anxiety right now.

Final Diagnosis (right back/shoulder): Malignant melanoma, superficial spreading type, invasive to Clark's level II, Breslow's depth 0.4mm, nonulcerated. Radial growth phase present. Vertical growth phase is absent. Mitotic rate is 0/mm(2). The tumor is present at a peripheral biopsy margin.

I do have a couple specific questions as well, as I have my consult for wide excision tomorrow. How is is Clark's level II if there is no vertical growth? Also, it seems as though someone in my position may not get a lymph node biopsy, but I of course am terrified that it has possibly spread to them.

Lastly, I read a little bit about regression and how that is usually not a positive thing. I had an original pathology report from a smaller hospital with the diagnosis as: "Atypical compound melanocytic proliferation with regressive changes, involving 1 peripheral margin". They then sent it to the Mayo Clinic to have another pathologist look at it to "rule out melanoma". So my final diagnosis above was the one from Mayo. That pathologist did not mention anyhting about regressive changes. Does that mean they did not feel there were enough changes to worry about?

Thank you for your help in advance. I am just so scared and want to make sure that they take a big enough excision out.

 

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Aaron's picture
Replies 3
Last reply 2/27/2017 - 1:12pm
Replies by: 45_dps, Anonymous, UBContributor

So here it is almost 2 am and I am in my hospital room.  Tuesday I had great news, and great scans.  Friday afternoon I develop a fever and take some aleve and start an Antibiotic and go to bed. Saturday is much better but discover a rash developing on my side.  Sunday the rash has spread and is warm to the touch. Go to er after talking with my oncologist. My skin got infected and it made it to my blood stream. Oncologist on call says that due to my status being treated with opinion/Nicole combo and hypophisitis adrenal insufficiency my immune system is  compromised. I have some dry skin which probably made it easier to get infected along with being in and out of health institutions.  Then I also discover that the wing of the hospital I am put in for my infection is the cancer wing.   I know I have not been down the roads that many of you have traveled and some of the statements I have made in this post reveal that but this was a little bit of a slap in the face reminder to me that I have cancer and even though I am getting good results, it's still there and it's effects are real and will affect me the rest of my life. 

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Everymoment's picture
Replies 7
Last reply 2/27/2017 - 7:12pm

Hi,
My mother-in-law who has stage 4 breast cancer (bones, spinal cord & brain lining) received a LETTER saying he would no longer see her. We all have no idea why!!! I've been on this forum for a really long time so I thought I would reach out to you all. Any thoughts why an oncologist could/would do this.
Thank you.

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Hi,

I just wanted to ask if anyone else can share their recovery experience after a complete lymph node dissection of a full side of their neck?

It has been a little over 2 weeks since mine (44 lymph nodes, some skeletal muscle, and a plum-sized submandibular gland). I start physical therapy tomorrow for my left shoulder and neck. I will also start seeing a speech therapist but that hasn't been setup yet (probably next week).

Here is my big question: The left side of my tongue is limp (when I curl my tongue only the right side curls, my tongue can touch my back teeth on the right side but only as far back as the canine tooth on my left side). Also, my left lower lip is limp but this is very subtle because the middle and edge of the lip are responding normally. Are these effects temporary?

Reading about nerve issues regarding the tongue it sounds like nerves do heal themselves quite well. So hopefully it is just a matter of giving my tongue and lip some more time to heal.

But any advice of nerve healing and/or physical therapy exercises for the neck would be greatly appreciated.

I start on Ipi in a week, so in many ways the nerve healing and physical therapy are good for me to focus on instead of worrying too much regarding Ipi.

Thanks!

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AB's picture
Replies 9
Last reply 2/27/2017 - 10:25pm
Replies by: AB, tschmith, J.bun, SABKLYN, Mark_DC

Anyone feel their doctor is interested in them versus just what they can write about the success and or failure they have had with Patient X? I need a doctor that will give me an idea of my real options, side effects and estimated timeline for the mets to spread to my brain, chest, abdomen & pelvis. Thanks again

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AB's picture
Replies 8
Last reply 2/27/2017 - 10:32pm
Replies by: AB, Mark_DC, tschmith, BrianP

Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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casagrayson's picture
Replies 1
Last reply 2/27/2017 - 9:16am
Replies by: cancersnewnormal

Has anyone heard from Juan or Stacey?

Strength and Courage,

Susan

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/26/2017 - 5:28pm
Replies by: Janner, AliCat61, Anonymous

Do you feel that that 'D' for diameter isn't useful for melanoma diagnosis?!
Just wondering, what was the diameter of your melanoma at the time of diagnosis? Was your mole growing in diameter or stayed the same size?

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MichelleRHG's picture
Replies 3
Last reply 2/25/2017 - 8:47pm

I just started adjuvant ipi and have read various reports about Curcumin while on ipi. You guys are the experts...do you know if its ok?

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/26/2017 - 4:17am
Replies by: UBContributor, jennunicorn, Anonymous

If melanoma was on the lower lig which lymph nodes it will usually transmit for? Is it in groin area? Or it could be behind the knee? and what they usually feel like?

Thankyou for reading

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CHD's picture
Replies 3
Last reply 2/25/2017 - 10:58am
Replies by: CHD, Bubbles, UBContributor

Just wondering, got my labs back yesterday and melanoma doc said all OK but platelets were on the high (438).  Said just something to be watched and will repeat labs in a few months.  I figure if it was worrisome, she would not be willing to wait a few months to repeat.  But knowing there CAN be a link between high platelets and cancer recurrence, decided to come here and ask how common it is here to have elevated platelets as part of a melanoma diagnosis.

Any input welcome.

I am one of the mucosal melanoma survivors, 3, almost 4 years out from initial diagnosis, clear PET CT last year.  Try not to worry where there is no reason.  Still whenever anything unusual happens, my mind does race.

Cheri

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