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 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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messedmelanocytes's picture
Replies 5
Last reply 4/16/2017 - 8:40am
Replies by: Anonymous, messedmelanocytes, casagrayson, AliCat61

After having two biopsies show melanoma insitu in January, I had 3 more biopsies done. Two of these sites were new moles (less than a couple years old ) and one was many years old but had changed over the past few years. It is the newness and the changes that deemed these sites worthy of biopsy.

The pathoodgy report reads: Clark's Nevus, Compound Type ( so-called Dysplastic Nevus). This is for all 3 of the biopsies.

For one of the sites, the report says "this lesion extends to the lateral msrgin."

I have two questions I hoping someone might be able to answer.

1) why wasn't the degree of dyslasia identiifed? Does the absence of comment mean it is not severe?

2) my surgeon wants to take more area from the one that didn't have clear margins. Am I unwise to put that off a few monthsl? I have to return to the dermatologist in late July and I bet she will want additional biopsies, I would rather get this larger margin problem taken care of when those additional biopsies are done in Aug or Sept. The surgeon didn't seem to like that idea, but I am wondering if he is being overly cautious or am I being cavalier? It just seems that with a dysplastic nevi there is no cancer so is another 4 or 5 months of much significance?      

Appreciate your insight.

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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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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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Anonymous's picture
Anonymous
Replies 5
Last reply 4/16/2017 - 11:52am
Replies by: Anonymous, Spl25, MichelleRHG, Jamie1960

I am confirmed Stage 3a and I am currently NED. A possible trial offers HDI/IPI or Pembro. My oncologist hold me because I won't take HDI I disqualify myself. However the oncologist administering trial is not saying the same thing. 

I am taking this weekend to decide next steps. Ethically I struggle with possibly proceeding when there is a drug that should I be selected would refuse. 

I am interested in others thoughts

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mrspink's picture
Replies 7
Last reply 4/18/2017 - 1:40pm

My dad had two seperate craniotomy's in the last month. His last one being about 2.5 weeks ago. 

They tapered him off his brain swelling meds and then last Sunday he started acting very strange, not really responding to my mom, speaking some gibberish, and becoming aggresive. 

They did a follow up CAT scan that looked good so they started him back up on the swelling medication but said it could be days to level out. 

It's been 4 days. His speech and ability to talk are worse then it was before surgery, he's wandering off and becoming aggresive toward my mom when she stops him, and we just keep being told to wait it out. 

His current neursurgeon is on spring break. I don't feel like my mom is being agressive enough to get him in to someone else. 

I guess I'm asking if this is normal?? Is this his new normal?? Should I step in and try to get him into someone or is it really just a wait it out and see thing. 

I'm concerned my mom wont be able to handle this much longer. 

 

*trying to get all the names of the meds from my mom now. 

 

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The last time I dropped in this forum I was waiting for an upcoming biopsy of chest lymph nodes that lit up on my PET scan. That was last Thursday, 4/6. Today I saw my oncologist and got the results.

The news was neither as good as I had hoped nor as bad as I feared. Most of the lymph nodes that were biopsied showed inflammation and scar tissue buildup that my doctor said could be coming from my continuing treatment with Keytruda. But one lymph node, the hilar node, was positive for a "small atypical collection of pigmented cells."

Since the skin lesions and lung nodules we have been monitoring for almost two years now were inactive on the PET, my oncologist said that the Keytruda is working, but it "needs some help." So next week I will be seeing the radiation oncologist to add radiation to continuing treatment with Keytruda.

This isn't the best news possible, obviously, but it isn't terrible news either, and just knowing the way forward now has lifted a huge weight off my shoulders.

-Bill

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ajpeterson's picture
Replies 4
Last reply 4/13/2017 - 11:20am

I just had an ultrasound guided biopsy yesterday, in order to figure out if I have the braf gene?  I have 2 doctor's in a conversation about whether I should take immunotherapy drugs first, or if a surgeon should go in and remove the cancerous lymph nodes in my groin (and those around it) first. Does anyone have any thoughts about this?  Just looking for some feedback. :). 

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DocPain's picture
Replies 8
Last reply 4/13/2017 - 3:27pm

I had my first treatment yesterday - yervoy and opdivo. Twelve hours later I feel like I've been 15 rounds with someone half my age. And a fever. It's not high enough to call back on. Hopefully it won't get there either.  All I can say at this point: ouch, I ache.

Doc Pain

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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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miaka618's picture
Replies 12
Last reply 4/13/2017 - 2:11pm

My latest scan came up with some more troublesome lymph nodes. After surgery my oncologist wants to radiate the area to try to contain this. My primary was on my right temple. What kind of side effects can I expect?

~April

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Replies by: Anonymous, FeelingLonely, miaka618

My mom was diagnosed with stage 1B Melanoma a month ago. (No ulceration, Breslow-1mm, miotic-1mm, no ulceration). She had a wide excision surgery and biopsy for the diagnosis. They did not remove the margins at the first surgery since it extended closer to the eyes and did another wide excision surgery, went wide and took out the margins. She also had a plastic surgery to reconstruct the area. Her primary is on face, on her right upper cheek, close to the eye/ear area. She had 3 moles on lower legs that were not cancerous but the doctor removed those too as prevention. The scars/stitches look really wide and deep considering how small/minor those normal moles looked like.

My mom is experiencing the following symptoms since the surgery (its now been 11 days since)

1. High blood pressure (she is now taking BP meds for it, but BP is in 150/90 range, occasion0ally goes higher)

2. Swelling on the face and also on lower legs.

3. Leg cramps.

4. Shortness of breath

5. Occasional dizziness.

6. Flap necrosis

When I mentioned these to the doc (which is hard because I live in another country and clock), he said those should clear with time, I know he is on vacation and she will be seeing him again this week. My mom is not educated on medical lingo and is naive when it comes to all that. My dad passed away few years ago.

I just wanted to hear if anyone experienced these after their wide excision surgery or have any inputs in general.

It's been 11 days since her surgey if that helps.

Thanks so much for listening to me. ANy advice will be greatly appreciated. Thanks!

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Hello, I am out of treatment options by my local oncologist. I progressed on ipi / nivo combo and nivo mono. I was on cotellic MEK inhibitor the last three weeks, but denied any more compassionate drugs based on prescription was combo and my mutation is non v600 or k601n.  I have an initial consult with Toronto oncologist for Tils in 2 weeks.  If I am not accepted,  then I will pursue US clinical trials, unless something else is offered,  although mostly phase 1 toxicity and dose escalation, which Onc states 10% response.

My local oncologist stated that my treatment will be either Ottawa or Toronto.  I am covered by provincial health care and don't have private insurance.  The question I have for the  US trials;  I assume that drugs would be covered by pharmaceutical company, then I need to fund travel &  lodging.  For international patients,  how does the funding of the hospital care get taken into account?  Are there better locations to negotiate costing than others?  Also, do I need a US oncologist to recommend any of the trials?  If so, since I am located in Northeast, then MSK , NYC or Boston would be closer. If requied travel to MD Anderson, TX.

David, ( Stage 4, mets lung and liver)

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newmanmark's picture
Replies 18
Last reply 4/28/2017 - 3:33pm

I have been on the Ipi/Nivolumab treatment since December.  During the combination portion of the treatment several patches of facial hair turned white.  Now that I am on the Nivolumab maintenance phase I am now starting to develop depigmentation on my hands, arms and face.  For those who have had similar side effects did the vitigilio progress and get worse over the course of the treatment or did it tend to stay in the spots where it started?  I know it's a good sign that the immune system is active but im not excited at the thought of it spreading everywhere.

Mark

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sprdie's picture
Replies 3
Last reply 4/11/2017 - 2:54pm
Replies by: Anonymous, sprdie

I had a stage 1 melanoma on my neck a month ago.  I had it removed.  I went back for my full body skin check last week, and I had 4 moles removed.  3 were ok, but the 4th said compound proliferation of melanocytes.  Sending on for Myriad Molecular Testing.  Results in 5-7 day.  This one was on my cheek close to my hairline.  This has been a whirlwind of a month for me.  Thanks.

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