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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Bubbles's picture
Replies 1
Last reply 7/8/2019 - 8:54pm
Replies by: Summer S.

Hope you are feeling better. Celeste

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AMcReader's picture
Replies 1
Last reply 7/11/2019 - 9:57pm
Replies by: MelMel

Hi all,

Over the past month I’ve been losing a LOT of hair. I have a lot of hair so I’ve been lucky that it hasn’t really become visible to anyone else, besides my husband who has been great about not complaining by how much it is EVERYWHERE in our house. ... :-\

Anyways, I’m trying to figure out the cause of this issue (and hoping that I’m not part of the small percentage of people who develop immune-related alopecia as a side-effect). Has anyone else experienced hair loss after a several month run with steroids? I have no idea if this is something that happens but it’s really the only change between the end of May and now.

I would appreciate anyone’s input.

Thanks!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Lou39's picture
Replies 8
Last reply 7/13/2019 - 12:42am

Hi, my Dad was initially diagnosed with stage 2 cancer December 2018. He had a mole removed from his back and 2 lymph nodes. A lymph node showed a trace of melanoma, so further CT and MRI scans were performed. MRI shows small lesions in his liver and he has to have a further MRI as a possible spinal lesion has been found. He starts Opdivo/Yervoy combo tomorrow. My first question is there hope that the disease at this advanced stage can be beaten? Secondly, would a spinal lesion complicate things further in that further or additional treatment will be required? My family and I are just reeling and the news just keeps getting worse. Any hope and information will be gratefully received.

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This is the third year anniversary of my melanoma diagnosis.  No recurrence or new melanoma.

Previously all I was given was the dermatologist's summary of my pathology reports.  After reading and learning from the vast knowledge of those of you here, I realized I needed the actual physical pathology reports.

Originally, I was told I was stage 1a with a Breslow depth of 0.20.  Micotic rate of zero.  This was the only information that I was given, but I was concerned because I learned here that the type of biopsy done, a shave may cause problems with staging if the margins were transected.

This is the information in the original pathology report:

Diagnosis:                                     Malignant Melanoma
Breslow Thickness.                  :    0.22mm AT LEAST
Clark Level.                              :    II
Ulceration.                                :    Absent
Mitoses.                                    :    Zero per square millimeter
Tumor infiltrating Lymphocytes :    Absent
Regression.                               :    Absent
Microsatellitosis.                        :    Absent
Lymphovasular Invasion.           :    Not Identified
Margins.                                     :   Intraepidermal and dermal component transected at base of specimen.    
                                                       Intraepidermal component transected at peripheral margins.( The edge or outer                   
                                                       boundary.)

Location                                     :    Right Anterior Shoulder
Clinical Information.                   :    0.6 by 0.4 cm irregular dark brown thin papule or nevus mole
Microscopic.                               :    A neoplasm, (abnormal growth of cells can be benign), is broad, asymmetric,
                                                        and comprised of atypical melanocytes, (epidermal cells that produce pigment),
                                                        both singly and in nests throughout all levels of the epidermis and in the dermis.
                                                        Single melanocytes in the epidermis tend to confluence.
                                                        (Joining running together, denoting certain skin lesions that become merged, 
                                                        forming a patch, denoting a disease characterized by lesions that are not discrete
                                                        or distinct from the other.)                                                                                                               
                                                        Nests of melanocytes vary markedly in size and shape,  Individual melanocytes                                                
                                                        demonstrate enlarged nuclei and pleomorphism.  (Characterized by having more 
                                                        than one shape or form.)

Gross.                                        :     Received in formalin is a 0.5 x 0.5 x 1mm dark brown shave biopsy of skin.

Next is the pathology report after the Wide Level Excision, which was done with standard margins.

Diagnosis    :     Malignant Melanoma In Situ, Margins Free (Margins free of cancer are considered clean, clear or
                          negative, which is the goal of the surgery.). 
Comment    :     This melanoma has been completely excised. There is no evidence of a residual invasive component.
Site.             :     Right Anterior Shoulder
Microscopic :     Atypical melanocytes are present throughout all levels of the epidermis. In the dermis there is solar  
                          elastosis, which is an accumulation of abnormal elastin (elastic tissue) in the dermis of the skin, along
                          with thickened collagen bundles oriented parallel to the epidermis and small vessels oriented 
                          perpendicular to the epidermis.
Gross.         :     Received in formalin is a 2.5 x 2.2 x 0.9 cm tan, pink and black oriented skin ellipse.
 
                    
My conclusion from the above is the only melanoma they saw in the removed tissue was the transected portion of the peripheral margin, which is part of the epidermis.  No melanoma found in the dermis, therefore melanoma in situ instead of malignant melanoma.  Only melanoma found in the dermis was that in the originally excised skin tissue.

Comments?

This happened three years ago.  Should I seek a second opinion?

Note that I added definitions after pathology terms of art, so I could interpret their meaning with more clarity.

Susan

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Replies by: BlindSquirl, Bubbles, Edwin

Hello everyone, I've poured through these forums & want to thank everyone, this has made us both more informed & a little less panicky with recent developments. I'd have gone crazy if I had to rely on the doctors for info.
Long story short, my wife was diagnosed 3C a little over a year ago.

Tumor on her left forearm. Sentinel lymph node biopsy showed a 3mm tumor in her left armpit. Referred to Rogal Cancer center at Univ of Michigan. CT scans of abdomen & chest, MRI of skull, all clear. Told by oncological surgeon "careful monitoring", come back in 4 months.

At 3-1/2 months tumor started to grow in left arm pit. By the time we could get back to U of M, it was the size of a grapefruit. U of M ordered scans & scheduled surgery. Scans showed her virtually riddled with cancer. Surgeon canceled surgery, said it wouldnt help & left us hanging.

Started IV vitamin C at a local clinic that had strongly advised us to contact MD Anderson. Early January admitted to local hospital for jaundice. Met with local oncologist & heard about BRAF mutation for 1st time. Discovered that U of M had done BRAF test back in November but sat on the positive results.

Transfered to Spectrum Butterworth hospital in Grand Rapids, MI because Melanoma Specialist Dr Chen had Braftovi & Mektovi samples in his desk.

Miraculous recovery, 3 months later all mets gone (including skull & spine) except for liver & spleen.

Blood work returned to normal & she even started having menstrual cycles again.

6 weeks ago, 3 items in blood work were slightly elevated & Dr Chen pulled scheduled scans ahead & found liver & spleen mets growing again.

Switched to opdivo/yervoy once every 3 weeks. 1st treatment felt like she "got hit by a truck" but by week 3 was almost feeling normal again and she could tell the new mets in her left arm pit felt smaller.

Also pursuing salicinium treatments at local clinic (have advised Dr Chen, who thinks it's a waste of time but says won't interfere with ipi/novo)

2nd ipi/nivo treatment last Friday. Admitted to local hospital on Wednesday after BP of 168/104 & xrays showed pleural effusion. Drained almost a liter of beer colored fluid, dr said there was definitely protein but no apparent blood.

Transferred from holland hospital back to Butterworth again yesterday. Dr Chen is out of town for holiday weekend but is still supervising her treatment. Said at 1st he suspected the mel was the cause but as he looked further & got more info, he's leaning more towards side effects.

Virtually every doctor has said that 2 ipi/nivo treatments aren't enough to have an effect but the mets under her arm continue to shrink.

CT scans & MRI last night, waiting for results.

Hoping they'll start steroids for side effects soon.

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SteveR13's picture
Replies 3
Last reply 7/7/2019 - 6:32pm
Replies by: BrianP, SteveR13, Bubbles

So I was diagnosed 3b last October. My Doctor (MD Anderson) didn't believe additional surgery was necessary but I am on a one year monthly infusion of Opdivo. During this year I will also be getting scans every 3 months (Brain MRI/Neck Ultra/CT). I don't question the need for any of this and I am happy to do anything I can to keep this disease at bay. I do wonder however when the biggest chance of reoccurrence is. Am I at the greatest risk during the first year of treatment? My mind tells me that if I'm on Immunotherapy and every scan was negative 3 months ago then the likelihood of anything being positive this time is quite low. Seems like a pretty short window for it to spread. Has anyone else experienced a reoccurrence during the first year while receiving treatment? Or even had it move to a higher stage when they were clean 3 months prior? I'm getting scanned on Monday/Tuesday so this is the time I typically think a lot about this. Any insight on this is appreciated thank you in advance.

Steve

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BrianP's picture
Replies 6
Last reply 7/16/2019 - 6:15am

I've been having some rashes below the elbows and knees. Not real severe but persistent. Dermatologist did a punch biopsy which raised the concern for a connective tissue disorder such as lupus. Blood work was ordered and I just got the results. Probably won't talk to Derm until next week. From what I've been able to determine the Homogeneous Pattern and Speckled pattern don't seem too bad but it still says "positive" under Antinuclear Antibodies. Can anyone give any insight as to the meaning of this report. Thanks in advance.

Antinuclear Antibodies, IFA
Homogeneous Pattern
1:160

Speckled Pattern
1:160

Antinuclear Antibodies, IFA
Positive
Negative <1:80 Borderline 1:80 Positive >1:80

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NewEra's picture
Replies 8
Last reply 7/10/2019 - 6:23pm

Lung biopsy came back melanoma, so I'm stage 4. One lymph and long nodule only on PET. but other sites have popped up since. Dr didn't do an MRI, so waiting for that on Monday to see if I have any brain mets.

Starting IP/NIVO next Weds, so reading up on the side effects. It seems that most of the reported side effects may be a result of extreme inflammation - fatigue can be caused by inflamed thyroid/adrenal glands, joint pain and skin rash are arthritis symptoms, which can be caused by general inflammation, and colitis/GI issues can also be due to inflammation.

So, I'm wondering if anyone had success just addressing the increased inflammation instead of treating the symptoms of inflammation. For example, taking Turmeric, or NSAIDS (aspirin, Advil, etc.) or a prescription anti-inflammatory, like Mobic. What about drinking cider vinegar/lemon juice/tart cherry - all holistic approaches to curb inflammation?

I'm planning on taking aspirin, turmeric and Tart Cherry juice daily - started today to try to head this off at the pass.... just wondering your thoughts/results if you tried this approach.

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Sandaman3's picture
Replies 3
Last reply 7/17/2019 - 12:13am
Replies by: Sandaman3, EllieS

Just diagnosed and confused as to how they determine in situ status from a shave biopsy?

My path report states:

Diagnosis
Skin, left posterior shoulder:
-Melanoma in situ, superficial spreading pattern, present at peripherial margin

Peter George Pavlidakey MD
(The Gross/Microscopic exams or the Gross Only specimen have been reviewed
and interpreted by the undersigned pathologist)
(Electronically signed by)
Verified: 07/01/19 16:22
PGP/PGP

Pathologist Comment
A sox-10 immunostain and multiple deeper level sections fails to reveal a invasive component.
The findings were discussed with Dr Kole on 7/1/19.

Specimen ID
Left posterior shoulder
Clinical Information
Asymmetric brown macule on left posterior shoulder, lentigo vs nevus vs melanoma
Gross Description
The specimen is received in a single container of formalin labeled patient's name, medical record number and is designated "left posterior shoulder". Received is a tan dark brown shave of skin measuring 0.8 x 0.7 x 0.1 cm. The surgical margin is inked black. The specimen is bisected and submitted entirely in cassette A1.
UABDERM
James Moreno, BS/Peter George Pavlidakey, MD
6/27/2019 12:19:30 CDT

I am having a wide excision next week and have been told that should be all that is needed along with 3 month follow ups.

Thanks for any feedback!

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MMH's picture
Replies 1
Last reply 7/5/2019 - 10:36pm
Replies by: Becky

I have a random question and the internet is giving me anxiety. Wondering if anyone on here has any insight. I was diagnosed last year with an Atypical Spitzoid, treating as melanoma because of my age and the pathology report particulars.

Because sarcomas are also spindle cell and can occur in the skin (clear cell sarcoma) how does the pathologist rule this out since they seem to have similar pathology but very different treatment/prognosis protocol?

Any guidance would be helpful. I sent a note to my doctor too but figured this group is quite smart!

MMH

MMH

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Bubbles's picture
Replies 5
Last reply 7/7/2019 - 8:20pm

Given your plan for upcoming surgery, Mike, I thought this report might interest you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/cut-it...

Wishing you my best always, but will be keeping fingers and toes crossed specially on the 11th. yours, c

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Gene_S's picture
Replies 4
Last reply 7/6/2019 - 7:38pm
Replies by: EllieS, Bubbles, MelMel, MMH

July marks my husbands 7th year of NED after a Stage IV and clinical trial of Ipi 10 mg/kg and GMCSF daily self injections.

At stage IV with and inoperable tumor on the Cervical Spine at C1 C2 area with several surface tumors in the same area and in the lungs and liver as well it was looking pretty grim but we watched the surface tumors melt away and it gave him new hope. If you would like to read more about his journey check out his profile. The lasting problem he has had is his body doesn't produce enough cortisol and so he stays on 5 mg prednisone daily.

Good Luck to all the fighters of this nasty disease.

Judy the loving wife and caregiver to Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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My brother went into a derm to get a suspicious mole looked at, the other day. She sent him to a plastic surgeon to get it removed.

The mole is large and on his back. He has keloids on his back from past injuries. When we told the surgeon we want the mole excised he said that wouldnt be a good idea because of his keloids and it would make a mess. He recommended a scout biospy, where he told me he would take 3 samples from different areas. I have never heard this before and looked it up on the internet but couldnt find it. Can someone explain? Should we have just got it excised? Help.

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Onclive now has 4 video's released in the last week with more coming from a peer panel of oncologists that features Dr. Weber, Dr. Jason Luke and others talking about current research and best practices from ASCO 2019. Here is a link to two of the four, you can find them on Youtube as well as Onclive, with Onclive it is worth joining (free and they don't spam you). Best Wishes!!! Ed https://www.youtube.com/watch?time_continue=97&v=vskLWHO7gb8 https://www.onclive.com/peer-exchange/malignant-melanoma-management/stag...

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stevek1959x's picture
Replies 2
Last reply 7/6/2019 - 10:45am
Replies by: Bubbles, BrianP

Finished by adjuvant treatment for State 3C on 4/3 (NIVO every two weeks - 24 treatments). Previous scans were clear other than where I had my CLND (SUV is minimal and continues to go down). My scan on 6/19 had one additional finding - Small focus of mild hypermetabolic FDG uptake involving the left calf which is indeterminate. While this may be vascular, could consider an MRI to exclude underlying abnormality/mass.
My primary site was top of left shoulder. My onco was not worried and has now scheduled me for a CT scan only in October for torso (no MRI).. I asked him should I worry and he said no. I have started walking at the YMCA in November so I don't know if this could be causing this mild FDG uptake. Always something to worry about in this business!!!!
So after 1 year, here are the side affects I had:
Thyroid started to go up and then corrected and is still normal.
I still have lichen planus outbreaks. They recently tried a steroid (methylPREDNISolone) 6 day step down. No relief - To be continued....
Creatitine level was high last two treatment. Initially thought it was my b.p. med now they think it was the NIVO. Anyway, finally back down to normal.
Vitiligo - last two treatments splotches on back of hands. It has now completely turned my arms white from the wrist to the elbows. I've cut some minor patches on my face. The neck is for the most part now white. Dumb me, went to see contractors building my house and I was just going to be there for a couple of minutes. Well, I lost track of time and I was there for 2 hours in the sun. Without sun screen. I paid the price especially on the Vitilogo. I'm not that light skinned so this stuff looks pretty bad. It's an acceptable trade off and a constant reminder of this cancer. Note to self: Don't ever do this again!
That's it and now the waiting game until October. Wishing you all the best on this journey.

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