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 4
Last reply 4/15/2017 - 3:56pm
Replies by: J.bun, AvaL, Enid Weiss, Anonymous

Dear All,

 

My diagnosis was just upgraded yesterday to a stage IIIC, after my second PET scan following sentinel lymph node biopsy (positive for melanoma).  Today I am at work and find that I am angry at every person who walks into the office.  Did this happen to you? Is it normal and does it pass? I can't afford to be in a front-lines smilng-to-customer job and get pissed off every time someone asks me a question! (And no - usually, I only get annoyed once in say, 15 encounters, and I hide my annoyance from myself better....)

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sconover's picture
Replies 4
Last reply 4/15/2017 - 11:59am
Replies by: sconover, Anonymous, Jamie1960

Hi! I was first diagnosed with melanoma when I was 22 and have since had two other diagnoses. I'm trying to understand the challenges other people who have had melanoma face, as it can be difficult to know if you should book an emergency dermatology appointment right away or if a mole is probably fine.

What do you guys do to stay on top of it?

What do you wish were different or easier?

Susan Conover

susan.t.conover@gmail.com

(940) 882-0206

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BitemeMel's picture
Replies 4
Last reply 4/15/2017 - 11:27am

Hello, 

After reading here, praying for many here, gaining hope, and learning so much, I can't believe I'm finally posting something after 2 years or so.

A little bit about us: I'm the wife of a great guy who also happens to be a stage 4 melanoma patient.We also have a 12 year old daughter :-)  He is 54 and we first discovered his primary on his scalp in 2012. Went through all the standard, SLNB and surgery, it had not spread at that time. (as far as anyone knew, right?) Decided against interfuron (no regrets there) and just went with regular checkups etc. Fast forward to the summer of 2015, my husband started not feeling well off and on and reported feeling weak. My active husband started spending more and more time lying down and became tired easily. Then started the stomach and gut pains. They discovered he was severely anemic, and after numerous tests, it was finally discovered that he had melanoma tumors in his intestine and some starting in his lungs. 

He was started on keytruda right away. Thank God, Keytruda for us has been a miracle.  Within 4 months, the intestinal tumors were undetectable...gone. The lung lesions took a bit longer but eventually also gone.  He has been NED for over a year and on keytruda now for 22 months. He has done very well on it, the side effects have been minimal and manageable. Fatigue, rash, cough, body aches...come and go, but that's been the worst of it.  We are blessed beyond measure.

Now, to my question. Lately, he has reported feeling more tired than usual and says he feels "anemic". Not as bad as before, but he recognizes the feeling. He also noticed on his most recent bloodwork labs that his red blood cell counts have gone down steadily for several months as well as his Feritin levels. Steadily declining. So, oncologist has ordered a PET scan (getting that tomororw) a bit earlier than planned--he wasn't due for his next one until June. If that comes back clear, as we pray it will, he said next step would be colonoscopy. I assume they are trying to rule out bleeding anywhere as causes of the anemia. When he was initially diagnosed as stage 4, the intestinal tumors were causing the anemia.

Ok finally the question. Obviously we are scared as to what's causing these anemia symptoms. It's hard to believe though, that after all these months of success on keytruda and a clean scan just 3 MONTHS ago, that he suddenly would have tumors again.  Does anyone know what else could possibly be causing him to become anemic again? Can it be a side effect of the keytruda? I read on a site that it could signal some kind of organ problems caused by the treatment. My husband has already been thinkng about going off of the keytruda at the 2 year mark. 

Also, does anyone know anything about maintenance dosing? Is this even done?  I'm wondering if he could do well to go on an every 6-week infusion instead of every 3 weeks. It's something we will definitely talk to his doctor about. I am scared to death of him going completely off keytruda but also scared of what it's doing to him long term. Thank you for listening. 

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speedrider's picture
Replies 2
Last reply 4/15/2017 - 9:31am
Replies by: Anonymous

I was diagnosed with Melanoma in situ under my left thumb nail. I went to my PCP August 30th, 2016 and showed her my nail. It was brown along th right side of the nail. She said it was nothing. I then had an appointment with my dermatologist the next day Sept 1st for a full body check. She never said anyting about my nail, and I did not mention it because mt PCP said it was nothing. About a month later October, I decided to google to find out what vitimin I was defitiant in  to have brown nail, and was reading all about brown stripes on nail could be melanoma. I emailed my dermatologist to question this. She said I should come in and have a biopsy. They made me an appointment 2 weeks later  They diid the biopsy, and it was positive for melonoma In situ. She referred me to Moffitt. Moffitt looked at the pathology and agreed that it was In situ. I had my surgery January 6th. They removed the nail bed and skin grafted. I went back for the results of the pathology, and they said I still had In situ, and .6 mm malignant melonoma. I went back for second surgery, and they removed everything up to the knuckle.  they then said it was clear. I'm just wondering if the dermatologist had caught it September 1st instead of November 21st, if I could have had a better outcome. I can't bend the thumb anymore, and the surgeon said I probably will not get much movement back. Aso, is there any precautions I should take? I am now on 3 month checkups. Should I change dermatologists being that she did not catch this when she should have? It seems to me if you go to a dermatologist for a full body check, they should check everything.

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MelOrama's picture
Replies 7
Last reply 4/15/2017 - 12:56am

Hi guys! I got "that" call on Thursday, April 6. I was dumbfounded. I had knee surgery the day before and was pretty groggy when the dermatologist called me.  I had gone in the previous week to have a mole looked at.  It was one that my boyfriend noticed on my back...she had grown rapidly. I say "she" because we named her. Bertha. 

 Unfortunately Bertha didn't hang around. The dermatologist, upon seeing it, immediately did a shave biopsy and left me with a pretty big crater.  To be honest, I really thought they were being cautious. I literally just came off of an 18 month fight with breast cancer. I was so happy to have my life back, be considered cancer free... again, I convinced myself they were just being cautious. 

The call was a gut punch. I'm not ready to do this $@&!? again.

My derm sent me to a melanoma specialist that I saw this past Monday. After visiting with me he wants me to see another specialist, reportedly top notch. He was booked until April 25,  but after hearing that, the first specialist called him and somehow got me in on Monday. 

This is all I know, and it's admittedly still a bit Greek to me.  After being diagnosed with breast cancer and hopping on the Internet and scaring the hell out of myself, I've kinda been doing he "internet down low." :-)

Here is what I know from path rpt:

Stage: 2Ta

Histology type: melanoma, spreading w/ nevoid featurers

clarks level: 4

Breslow: 1.3mm

growth phase: radial & vertical 

ulceration, satellitosis:  none

Mitotic index: <1

 After talking with the first specialist, there are some good things in the report. I will see the next specialist Monday.  I know for sure I will have surgery to remove the rest of the tumor, and do the whole thing.  The funniest part? I'm on crutches for another three weeks…so if they go under my arm, that will be comical!

In the mean time, I'm reading some stuff here and gaining lots of insight. Thank you for sharing your stories. 

Melissa

 

 

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Anonymous's picture
Replies 7
Last reply 4/15/2017 - 12:35am

I had a mole removed when i was 18 and it came back as pre-cancerous and was told all was good with just them removing it. Being 18 I did not ask questions and moved on with life. Now I am 38. I have a new spot on my back that itches like crazy. I can hardly reach the spot but from what I can feel it feels a lil crusty and slightly raised. I had my daughter look at it and just asked her to describe what it looks like. She stated its sort of brown with a black dot in the center. I asked her if it was round and she stated, no its just goofy. I didnt ask her anymore because i didnt want to worry her. I have an maternal aunt who had melanoma. I know i need to get this checked sooner than later but currently do not have healthcare insurance. Just wondering if itching is a symptom anyone has experienced. And if so did you wait or go in immediately and what was the outcome. I should have insurance in 30 days. Oh, one more detail that is odd. The area surrounding the mole goes numb and gets kind of tingly similar to what it feels like when your foot falls asleep. That area feels like a perfect square and covers like a 3x3 inch spot on my back and the mole is somewhere in that area. I had surgery on my shoulder 1 year ago and thought it may be related to that but when i mentioned it to my surgeon he stated he felt it had nothing to do with my shoulder and sent me on my way. I had not discovered the mole on my back at that point. (The numbness started first, then the itching and then i felt the mole and had my daughter describe it to me.) Has anyone ever had that as an symptom either.I know that the only true answers can come from a doctor and a biposy just looking for some insight on what my next steps should be. Do i wait for insurance or try to get in sooner? How

WmJ

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Bubbles's picture
Replies 7
Last reply 4/14/2017 - 5:24pm

Hoping that the diarrhea and other difficulties have improved????  Holding you both in my heart each day.  c

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Anonymous's picture
Replies 4
Last reply 4/14/2017 - 5:17pm
Replies by: debwray, marta010, tschmith, Anonymous

I've been referred to a palliative specialist despite having a fairly low disease burden. I have pain in one area where I had surgery, but otherwise have had very few problems with treatment. Is this a common occurrence? How many people have had this happen to them?

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Jubes's picture
Replies 25
Last reply 4/14/2017 - 5:01pm

Hi all

after my lung resection in November (lower lobe) I had a pet in January that was clear. My oncologist has organized 3 monthly pets for this year and if I make it clear to 2018 we will move to 6 monthly. Well the good news is that this weeks pet was clear so 5 months after the op I'm still NED. However severe joint inflammation still evident on the pet. I have been on sulfazalasine for a few weeks and waiting for it to kick in and managing to keep working so I am over the moon happy. Hoping for positive results for all of you wonderful supportive people who I rely on so much for help and information

Anne-Louise 

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Sbdeutsch's picture
Replies 20
Last reply 4/14/2017 - 4:57pm

Last night Juan Victoria passed away. The Ipi just couldn't start doing its job fast enough and the disease burden was too much, his lungs couldnt keep doing their job. Its been a long hard battle. This board and the people on it have been a life line to us as we have gone through the few ups and mostly downs of this horrible disease. Thank-you all. Also Dr Jason Luke as his primary oconlogist was there every step of the way. 

 

I wish all of you luck as you fight this horrible disease and look forward to the day when a cute is found. 

 

Stacey, love and wife of Juan Victoria

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snow white's picture
Replies 14
Last reply 4/14/2017 - 4:43pm

So Dad has been EXTREMELY mad at the world, worse than ever, on top of that not sleeping.  I texted the Doc and she had him come in.  Dad was on 80 mg of Prednisone and the Doc said that was likely the problem.  He was on the steroid because his liver numbers were up to high.  She has decided to taper him from the Prednisone and start him on Cellcept, she feels it will work much better for him.  Currently trying to get insurance approval, if not it is about going with $400+ out of pocket per month.  He is currently down to 20 mg and doing so much better!!!  Thank goodness!!!!  The plan is to start him on Pembro (Keytruda) on the 17th of April.  He will get new scans on the same day.  I think its a good plan.

Any thoughts?

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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JoshF's picture
Replies 23
Last reply 4/14/2017 - 12:41pm

Thought I'd drop in and say hello as it's been awhile. I hope everyone is doing well. I'm still trying to recover from TIL and have been very weak & lethargic. I was actually supposed to go to MDA this week for the Keytruda portion of the trial but too weak. I'm going to withdraw and do Keytruda at home. I've never been so physically impacted by this disease and the treatment. I had one sub-q shrink to nothing but that's it. It's been about 6 weeks since TIL infusion so I'm still holding on to hope this works. Not sure with performance status that I'd have many options left. I hope everyone is well, I saw Brian good news, saw Jake is doing good but having SRS...I didn't look past 1st page but I think of you all often. Blessings 

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 13
Last reply 4/14/2017 - 2:16am
Replies by: KatieB, Tra88, CatHar12, natasha, Anonymous, Janner, MichaelFL

I was diagnosed last year with 1a SSM on my back.  Breslow 0.33mm, no ulceration, one mitotic figure identified in dermis (mitotic rate listed as <1), because of that mitotic figure in the dermis vertical growth phase listed as present (early invasive vertical growth phase), Clark II (I know this is not used as much nowadays).  Had WLE and SLNB (I know it wasn't necessary with 0.33, but I pushed for it), results were clear.  I'm very worried about recurrance/metastasis down the road, because of the vertical growth phase invasiveness.  I don't have a good handle on my prognosis, because even though stage is 1a, Breslow is thin, etc.....it seems like of the thin melanomas, I'm in a high risk category because of VGP and dermal mitotic figure identified.  So, I'm really struggling with this.  What would my prognosis really be with this?

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/13/2017 - 9:23pm

I have had this mole since my mid teens over the year it's slowly been changing colors and it shocked me when looking st it the other day just how ugly it is. I'm looking for advice. I'm trying to get it looked at asap but it seems that I'll have to wait months to get into a dermatologist. What did your melanoma look like? Is this something I should worry about?  I can't seem to figure out how to upload a picture but it is a normal sized more I'd say, oval with some coloring on the outside that is light brown. With black tan spots in it now. 

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Jeff_in_FL's picture
Replies 11
Last reply 4/13/2017 - 8:14pm

Hi all,

Just wanted to introduce myself. Just informed this afternoon (4/10/17) in a quick phone call from the Dermatologist that my lesion is Melanoma. I don't remember the details, but I think it is a fairly deep Nodular. I was a little in shock from the diagnosis that I didn't really listen to what she said. I do know that they are going to schedule a Wide Excision, and a skin graft for it. They are also going to take some lymph nodes. That's about all I know at this point. Now I wait ...VA Healthcare can be really slow.

i will be lurking around :)

(((Hugs)))

Jeff

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