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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kalisama's picture
Replies 2
Last reply 10/29/2014 - 11:26am
Replies by: kalisama, Bubbles

Has anyone seen any specific data on this yet? 

Thank you in advance,
kali

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mary1233's picture
Replies 3
Last reply 10/28/2014 - 11:17am
Replies by: Anonymous, Janner, mary1233

I am currently in remission for mucosal melanoma, so I may be overreacting.

I have two sisters who are dealing with moles removed by dermatologists who found cancer "in situ". They are planning to follow up with the dermatologist.

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GAngel's picture
Replies 12
Last reply 11/10/2014 - 11:28am

Hello all...just wanted to share our great news that Rudy continues to remain NED. He is still on the Tafinlar/mekinist combo taking it intermittently as well as taking cannibas oil daily. We are so thankful and blessed. We want to encourage all of you to keep on fighting and never lose hope. Keeping positive is so important. 

God bless you all...we are praying for you.

Gina and Rudy Rangel

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/28/2014 - 10:01pm
Replies by: Emcjones1, Bubbles, Anonymous

I just did my second CTC which measures how much melanoma is in the blood stream. The first one i did in June came back at .75 which according to the doctor meant that I had a very small amount of melanoma in blood stream and a very low risk of distant spread.

The second one however has increased allmost 6 fold to 4.25 whcih now puts me at grave risk of distant spread or recurrence. Now I dont know what to do and I am really gutted.

I am currently stage 3 but it seems like things are getting worse quickly although i still feel really good. Apparently the test which is the Maintrac CTC test  has a very good predictive value and is usually six months ahead of what happens.

I dont know what therapies I should try or what i can do now. They only thing they are offering is chemo or interferon which I wont do. 

 

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Girl52's picture
Replies 19
Last reply 11/3/2014 - 6:28pm

My brother-in-law had followup visit today with general surgeon who did his WLE and SNB recently; like PET scan, nodes clean. Path report had said, "Diagnosis: metastatic melanoma" of the lesion on his arm. BIL has no plans to see an oncologist, much less a melanoma specialist, though folks here and other research indicate that he's a Stage III.

If staging information isn't cited specifically on your pathology report -- and neither your dermatologist nor surgeon use this precise language -- how do you know you're a Stage III? How do patients normally get this information. Can it happen that no one ever specifies this...that any/all doctors a patient sees assume that someone else has given him or her this info, or that he or she will arrive at this conclusion on their own? 

Surgeon didn't refer BIL to an oncologist, but did say he needed to be very alert for ANY skin changes, and any pain, fatigue, or other body signs that might indicate cancer spread. If they tell you this much, can't they come out and say, "Stage III?"   

    

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Gordknight's picture
Replies 15
Last reply 11/3/2014 - 5:35pm

Let me give you a bit of my background.  Also been a hypochondriac.  Well not always, but for at least the past 8 years or so.  Always worried that everything is cancer or something equally as bad.  Well today my worst fears came true.  After a week of waiting in anguish for my biopsy results to come in for two moles I had removed I got the call today.  One of them is Melanoma.  My soul dropped into my shoes and I instantly began to think about my wife and leaving her alone on this earth.  

Im a31 almost 32 year old caucasian male.  I requested my pathology report from my dermatologist.  I am meeting with a plastic surgeon on the 3rd of November since the melanoma is located on my neck.  Here is my pathology.  I dont know how accurate it really is becase he did a shave biopsy.  

 

PROCEDURE: BIOPSY

SPECIMEN LATERALITY: Left Neck

Breslow Thickness: Favor 0.22 MM

Clark Level (not overall tumor stage): Favor II

Ulceration/max width: Not Identified

Mitotic figures: <1 per MM squared

REgression: not identified

Lymphatic Invasion: not identified 

Perineural invasion: not identified

Microscopic Satellitosis: not identified

Tumor-infiltrating lymphocytes: Non-Brisk

Associsated Melanocytic Nevus: Absent

Predominant Cytology: Epitheloid

Lateral Margins: non involved (1mm)

Deep Margins: Not involved (0.5 mm)

TNM Tumor Stage: Favor T1a NX MX

 

I am even more terrified because the other day my wife accidently knicked the scab that had formed after the biopsy and caused it to bleed.  Could this make the cancer cells spread into my blood stream?  I am so scared.  Can anyone help me?

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theresar's picture
Replies 4
Last reply 10/28/2014 - 9:39am

Quick review of history- I'm a 54 yo woman initially had vulvar lesion removed 3 years ago with clean margins and lymph nodes. Now Dx in early July 2014 with metastatic mucosal melanoma with lesions on my liver and lungs. Completed my 4th infusion of Yervoy 9/25 and on follow-up visit 10/23. My oncologist said he did not need a CT to determine that the Yervoy did not work. (i might agree with the status of my belly and my liver function tests are dangerously high, LDH soaring.)

I am  seeing a melanoma specialist and he has recommended 2 options  1) I can move forward with the Keytruda which would be the next step and he would obtation a CT as a baseline but he would reccomend the Keytuda very cautiously because of my liver function-he is concerned that the side effects on my liver could put me into failure quite quickly. Or route 2) He could start me on steroids and that would temporarily make me feel much more comfortable but obviously would not treat the tumors. A palliative care and likely hospice referral would come with this option.

I was told that once I started on steriods my option for the Keytruda would be off the table. Also told that Iwould not qualify for any clinical trials because  my liver function is so bad. I know that there are other treatments out there that have been approved. I do not have any of the genetic mutations ie BRAF, etc. identified.

I know that there are other options out there beginning with a 2nd opinion and certainly alternative therapies but just looking for thoughts experiences and advice. I do live in Michigan.....

Where there is Faith there is Hope!!

Theresa

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Anonymous's picture
Anonymous
Replies 0

HI Everyone,

 

I will be in chat tomorrow night and will see who else I can find of the old timers,  Hope to see you there

Monday night at 8 PM EST

Hope you can jon us 

Love and Light

Carole K

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5dives's picture
Replies 10
Last reply 10/28/2014 - 6:54am

Hi all,

I am 45 years old, and I have recently moved from stage 1B to 3A because of a second opinion at Memorial Sloan-Ketterting that helped clarify some very iffy pathology results. The MSK doc called me T1bN1aM0, but did not want to say "3A". He preferred to say T1bN1a. To be honest, I don't understand his reluctance to say 3A, but I want you to have the full picture. My one lymph node had micro, not macro metastasis. The MSK doc said if it was a macro amount he would recommend CLND, but for my situation and my age, he thought it would be overkill. MSK does not do interferon. 

Overall, I felt very reassured by my visit to MSK and am oddly comforted by being told I'm T1bN1a instead of "just" stage 1b, because the MSK doc recommended 6 month scans. He also recommended being careful with brain scans as melanoma rarely goes to the brain without going somewhere else first. He said my oncologist at Loyola in Chicago could choose what scans he would like to do. 

http://melanomadame.blogspot.com/

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Bubbles's picture
Replies 4
Last reply 10/28/2014 - 5:08pm

Hi all,

Saw this article from Clinical Oncology News, Oct 2014, last night and figured some of you might want to hear what the experts are thinking on the notion of anti-PD1 as a first line therapy for melanoma!!!  Quotes and a link here if you like....

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/anti-pd1-nivo-and-pembro-as-first-line.html

Fingers crossed! Wishing you all my best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Replies 5
Last reply 10/29/2014 - 12:25pm

Someone on this list was seeing a doctor at Emory a while back but a search here did not turn up that post. 

Second question:  Can you contact someone privately thru this list?  Not chat, private email.

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/28/2014 - 11:11am
Replies by: kalisama, Anonymous, Carole K, ecc26, JoshF, Ed Williams

My mother is at stage 3c . After 6 months of clean scans, we found in an MRI reoprt about her brain mets. She had absolutely no probelms. What are the options of treatement?

God bless you

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cbe's picture
Replies 5
Last reply 10/28/2014 - 9:55am
Replies by: kalisama, MattF, katie1, DZnDef

My husband is stage 4 with melanoma in the liver and lymph nodes. (Had  3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.

My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop.  Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.

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Anonymous's picture
Replies 6
Last reply 11/11/2014 - 4:44pm
Replies by: lou2, Anonymous, Janner, kalisama, Carlos P

Anyone familiar with the use of dermoscopy or confocal scanning laser microscopy?  Both are said to be non-invasive.

Have had one lentigo maligna removed on back, big ditch there now.  Another one nearby just like it, said by different derm at teaching medical hospital said to be slow growing, just watch it.

Now I have a spot on forehead, thin skin only over bone.  It itches a little now and then.  Getting very scared.  Don't want another big incision, and don't know how they could do it at this location anyway.

So, looking for experience with these non-invasive methods.  And whether anyone knows of a place in the SE U.S. that does these first, before biopsy.

Thanks.

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