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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LRS88's picture
Replies 2
Last reply 7/16/2019 - 2:10pm
Replies by: Alce123, ed williams

I am really struggling to move on from a T1a Melanoma diagnosis in March of this year. I am sorry if this is long but I just feel like I need to put it out there, somewhere.
Some background: I am a 31 year old mother of 2 boys, aged 1 and 3! I had my second son in May 2019 and pretty much immediately after he was born I noticed a mole on my stomach (that I have always had) was bigger. Naturally, those around me had the explanation that I was just pregnant and that was the reason. I took a picture of it then and I am glad I did. In November of that year I went for my annual skin exam (my college years involved a lot of tanning. unfortunately, shame on me) and showed my dermatologist. She also indicated that it was most likely due to pregnancy skin stretching but to keep an eye on it. Over the winter I just had a feeling this mole was not right. In March of this year I was about to start a new job and knew I would not have insurance for a month, so I took another picture of the mole, and while there was not a huge difference.. the mole had changed. I made an appointment that day and was scheduled for an appointment on a Thursday. The dermatologist took me seriously and said while she was not overly concerned about the mole but if it seemed to be changing she wanted to remove it to be sure. She called me after hours the following Monday and said she was very surprised and she was so glad I came in because it was a very early melanoma. I have always been terrified of getting melanoma and I honestly could not believe I was hearing this. I heard her say .5mm and only a WLE would be needed. I asked to come in ASAP due to my new job. She understood and scheduled me later that week.

I asked for a copy of the pathology report
Diagnosis:
Shave Method, Left Lateral Abdomen- Malignant Melanoma arising in Association with a pre-existing nevus
Histologic Type: Superficial Spreading
Maximum Tumor (Breslow) Thickness: 0.5 mm
Anatomic (Clark)Level: IV
MIotic Rate: 0 per MM squared
Ulceration: Not identified
Tumor Infiltrating Lymphocytes: Present
Tumor Regression: Not Present
Lymphovascular Invasion: Not identified
Neurotropism: Not identified
Tumor Size (Greatest Dimension): Not provided
Regional Lymph Nodes: Not Applicable
Macroscopic Satellite Nodule(s): Not identified
Microsatellite(s): Not identified
Margins: Peripheral Margins Involved
Pathologic Stage Classification: pT1a

After a WLE the pathology report stated:
Diagnosis:
Excision, left lateral abdomen- prior biopsy site related changes, no evidence of residual malignant melanoma

After discussing with my dermatologist and primary care doctor they said regular, frequent skin exams (3-4x per year) are all that is recommended.
Now that it is over with I feel like I have so many questions and cannot handle the "what if".
Isn't Clark Level IV a poor prognosis factor? what does Neurotropism: Not identified mean? What if there is a single cell somewhere just waiting to spread?
Will I be around in 10 years for my kids? Do I no longer have the option to have additional children?
I feel like those close to me either have one of two reactions: "why are you so worried they cut it out" or "oh my gosh I would be so worried too". I am not sure what I want to hear so I just don't talk about it at all.
Again, sorry if this is long and rambling.. but as I previously indicated. I am struggling.

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ed williams's picture
Replies 1
Last reply 7/15/2019 - 9:14pm
Replies by: MelanomaMike

The Angeles Clinic and Dr. Omid Hamid is cutting edge and it might be time to pay them a visit!!! Here is a little sample of what they are doing, there are options my friend!! https://m.youtube.com/watch?v=fbSHUEbhTho&feature=youtu.be

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Suzana65's picture
Replies 22
Last reply 7/16/2019 - 8:26pm

I was diagnosed in June of this year with invasive melanoma on my back . After WLD and sentinel lymph node biopsy one of the lymph nodes out of 6 was positive with approximately 0.35 mm burden. I am now scheduled for PET scan and to see an oncologist. I am paralyze with anxiety. It makes it worse that I already have an autoimmune issue. Sojgren ‘s syndrome and psoriasis. Can anyone with autoimmune issue in the forum help me understand if I’ll be eligible for any kind of therapy. Thank you.

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aweatherred's picture
Replies 5
Last reply 7/15/2019 - 7:41pm

I'm a 61 year old registered nurse with recent diagnosis of Metastatic Malignant Melanoma
In November 2018 I had small lesion excised in my surgeon's office, pathology report came back malignant melanoma w 1 mm margins, Subsequent PET scan was essentially negative, with the exception of site of excision. Wide local excision and sentinel lymph node biopsy performed, negative for residual melanoma (incidental benign lentigo of skin) the surgical margins were clear and sentinel lymph node was negative for tumor.
Fast forward to July 1st of this year I noted a painful nodule in left groin (previously biopsied SLN bx site in November 2018) Excision performed revealing metastatic malignant melanoma - 4.5 cm.
I was so taken back with these findings as I truly thought I had scathed any metastasis. I am currently awaiting PET scan and appointment w/ oncologist this week
I am anxiously awaiting a plan of treatment, a few days seems like an eternity. Can you all share your experiences and what I have to look forward to in regards to treatment and expectations regarding these new findings.
I'll add my post op was eventful, as both the incision of WLE and SLN biopsy required bid packing for several weeks r/t nonhealing wound.

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I just noticed today that there's a faint dark vertical line running down from the top of my nail to the very edge. I never really noticed it there before today, but after some good old googling, I kept getting information about subungual melanoma and it's starting to scare me. I'm certain I haven't injured my finger or nail recently and so it doesn't look like a splinter hemorrhage. I'm 28 years old, female, of Asian descent and I don't have any other major health conditions. However, my mother is currently battling stage 4 lung cancer. I have a doctor's appointment in about a week, so I was planning on bringing this up to my doctor when I go.

For those with diagnosed subungual melanoma, did you gradually notice the dark line appearing over time or did it appear fairly quickly?

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Momand2kids's picture
Replies 7
Last reply 7/18/2019 - 9:33pm

Folks
I had an early stage melanoma back in May--surgically excised, clear margins, no further treatment. At the wide excision, I had the surgeon look at 3 other things- she biopsied 2- came back atypical but not melanoma-fully excised, have one more appointment to do a slight wider excision on one. I have always gone to derm every 6 months for full body checks. My next appointment with him is in October. I just had one in June, after my melanoma and he took a mole off of my side (again, atypical, not melanoma). Here's the thing, now almost every day I see something on my arm, leg, etc and I think "it's melanoma" which I rationally know is crazy- and I also know that I will have him look at everything again in October- I have my husband check out my back, etc. I am always vigilant with my health, but this is making me a little crazy-- is this normal????
thanks

Momand2kids

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MelanomaMike's picture
Replies 11
Last reply 7/17/2019 - 11:07am

Hi Family, boy I'm not good emotionaly, I'm trying to keep it together not only for myself but for my wife, I can tell she's " one more bad news away" from losing it, my tumor that was suppose to be taking out last Thursday is starting to hurt, it's on my left side just under my last rib. Naproxines have always been my go to pain med, works great so far. I just cant believe they canceled it, oh I'm not a "candidate" for surgery, what the hell is that!!!?? Any ways, and my bowel movements are really letting me know that the Mel Monster in my Sigmoid is alive and attempting to take over, I won't go into graphics but, put it this way, I'm starting to be afraid to eat. I looked up diets, fatty fish, nuts, fruits lots a water ( Wich I do anyways) and eat small meals throughout the day.....
Just updating you on my feelings, I'm just so upset...love ya guys, always have..

Im Melanoma and my host is Mike..

www.covvha.net

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faithhannah714's picture
Replies 8
Last reply 7/16/2019 - 4:00pm

Hello All,

I am writing on behalf of my Mother In Law. In June of this year she was diagnosed with Stage 4 Metastatic Melanoma. She had a melanoma previously removed from her back in July of last year and were told that the margins were clear. It was not a surgical Oncologist that did the removal/biopsy.

Fast forward to the end of May this year and she noticed that she had a golf ball size swelling in her right supraclavicular lymph node. She had that partially excised at the end of May and she was diagnosed in early June with Metastatic Melanoma.
Prior to the surgery she had a chest/neck CT and upper abdomen CT. When I read the results I cried. My Mother In Law is 82 years old and cares for her 55 year old Autistic Daughter. My Father In Law passed away in 2011 after an awful
struggle with diabetes, amputation and infections.

I have been helping out my Husband and her other children as they are either working or live in another State. Her CT results show that she has masses in her lungs, chest wall, adrenal glands, paraspinal region, orbit and others. The impression
on the CT scan also showed that she has a mass in her pancreas that is suspicious for primary pancreatic carcinoma and less likely metastatic disease.

She currently has an HMO Insurance plan where all of her required visits need to be approved by her PCP. I have fought tirelessly with her Insurance Company and PCP to see if they would approve for her to be seen at
Moffitt Cancer Center in Tampa which is 5 minutes from our house. Unfortunately both the referral and appeal were denied and she is not being seen by a Metastatic Melanoma Specialist. She is currently being treated at Florida Cancer Specialists but I am not happy with the care she is receiving or the answers we are getting. When we initially met with her Doctor two weeks ago I asked him politely if he is a Melanoma Specialist. He replied "NO, and maybe this isn't a good fit, some patients don't gel with Doctors". I explained that I was asking for my benefit. I also questioned as to the other masses noted on her CT imaging reports. I asked if he is certain that the other masses in her body are from the metastatic melanoma and he said "We are assuming they are". I am concerned that she may have another Cancer that is not being treated, especially with the note about the Pancreatic Cancer. We asked him about Clinical Trials and he said they don't offer any because most of the
time they don't work. The more I spoke to him, the more I was concerned.

I am writing to see if anyone can offer me any guidance. My Mother in Law started her immunotherapy treatment this past Wednesday. She will be treated with Yervoy and Opdivo every 3 weeks. In the past month her health is declining. She can barely walk without getting out of breath, she is covered in bruises (neither her PCP or Cancer Doctor) were overly concerned with his. Her Oncologist even asked if she was falling down and we know that she isn't. Her Right Eye is completely red in the white of her eye and it has been that way for over 3 weeks with a bruise underneath and on her cheek. (she does have a mass behind her right orbit - when we asked her PCP about this he said last week - couldn't show a mass behind the eye as that wasn't what was imaged, it's on the NECK/CHEST CT report and he told her about it initially). She has lost her appetite but we've told her that she needs to make sure she eats and drinks to keep her strength up. She has her Granddaughter and Great Grandchildren living with her but we live over an hour away. Not sure how she will manage when they go back to School. She is also not sleeping well so we've ordered her a power recliner/lift chair that she may be better sleeping in.
She may need to move in here with us with her Daughter when my Oldest Daughter goes back to College in August.

We are concerned that there may be a secondary cancer that is not being addressed. We are concerned that she hasn't had a PET scan, Dr told us that it's a waste of money and not needed. We are concerned that she is not being seen
by a Melanoma Specialist. She had to go for Fluids yesterday as her blood work showed that she has high Uric Acid so that was another thing.

I am doing the best I can to research and research about this horrible disease. She has been in great health up until this past year and it is so hard to see her like this. Any guidance is greatly appreciated and thank you for listening.

Faith (Daughter In Law).

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caman's picture
Replies 6
Last reply 7/14/2019 - 12:31pm
Replies by: Bubbles, Anonymous, caman

Has anyone heard of this or has some experience with it?

https://www.chelationcommunity.com/2018/04/23/chelation-cancer/

Free radicals play an important role in the genesis of Cancer. By removing the metallic anions from the blood stream, EDTA helps cells to remain healthy and helps the damaged cells to heal. Research has shown a decrease in the incidence of death by cancer after EDT treatment, although the exact mechanism is unclear. In some cancers, the use of EDTA was found to strip the tumor cells of their protective coat, allowing other mechanisms (such as protein digesting enzymes) to destroy the tumors.

Building the Immune System
Chelation therapy can rebuild your immune system.
Get rid of every microbe in the body. The immune system communicates by using electrical signals. However, microbes also emit electrical signals, which interfere with the immune system communicating with itself. There are several ways to remove many of the microbes from the body. One way is the Bob Beck Protocol.
Include colloidal silver (or another safe form of silver), vitamin C, MMS (Miracle Mineral Supplement, which is a form of stabilized oxygen). Keeping microbes under control has actually cured many cancer cases by freeing up the immune system.
Remove heavy metals from the body (some of which come from dental amalgam, vaccinations and other sources). These are other MAJOR causes of suppressing the immune system. Zeolites, Vitamin C, EDTA chelation by IV, and other chelating items, are the key to removing heavy metals from the

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Kimmie0811's picture
Replies 2
Last reply 7/14/2019 - 5:55pm

Hi! I have been reading throigh your forums and y'all are a wealth of information. So thought I could get some opinions.

Im a 34 year old female with a million moles, had more than a dozen removed and had varying degrees of dysplasia. Last year I had a normal pink round mole on the back of my arm go crazy. It turned a bluish/purple hue, got scabby and grew. I went in to derm and she reassured me it was just a hormonal mole (I was mid pregnancy at the time) and wasn't even worth removing. Said to come back any time after the baby was born and they would do my annual then and check on it. Fast forward to a few months after baby and at my annual the new dr tells me it looks scarily like Melanoma. She did a shave biopsy. A week later the pathologist calls and says it looks like melanoma with a r/o differential of Spitzoid Melanocytic Proliferation. Sent it to MD Anderson and I'll post the report below. The reason Im still seeking answers is because MD Anderson told me i needed to be followed by a Melanoma specialist. But the WLE surgeon was baffled by that. Ive also had spreading pain on the right side of my body that is, at times, intense enough for narcotics. The pain started in one spot, under my armpit on the same side they removed the mole and began within days of removal. It has since spread to my breast, groin, right thigh, upper right abdomen and behind my pubic bone. Does the pain have nothing to do with the Spitz tumor? I have autoimmune issues as well so it's possible the stress of them saying Melanoma was enough to trigger something. I have 5 kids who need me. I am nervous, though. I've given it months to go away and it isnt leaving. I just want to know if I should definitively be looking elsewhere for answers or if this could possibly have anything to do with it (as I have read the spitz tumors can metastasize). I would love an educated opinion. Here is the report:
"Sections reveal skin with a symmetrix, well circumscribed comoiund melanocytic proliferation. Within the epidermis there is a mostly nestled proliferation of atypical spindle and epitheliod melanocytes. These melanocytes exhibit increases amphophiloc cytoplasm and enlarged oval-elongate nuclei with small nuceoli. Hyalinized eosinophilic globules "kamino bodies" are present, and upward paegtoid migration of intraepidermal melanocytes is focal and confined to the center of the lesion. Similar nests of melanocytes are present in the subjacent dermis amidst a variably dense lymphohistiocytic inflammatory infiltrate. The dermal melanocytes show reduced cell size with dermal descent and disperse singly towards the base. Dermal mitotic figures not prominent.
Immunohistochemical studies were performed at the referring institution. Antibodies for Melan A highlight the prolferative melanocytes within the epidermis and dermis. Antibodies for HMB 45 show patchy reactivity with stronger staining within the epidermis and superficial dermis. The melanocytes show retained expression of P16 stain. a cocktail (Mart-1/KI67) highlights the compound melanocytic proliferation and confirms a low-absent proliferative index among the dermal melanocytes.
Together these findings support the abkve diagnosis. This nevus exhibits cytologic characteristics of Spitz nevus and architectural features of Clark/dysplastic nevus, consistent with "Spark" nevus. "

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Baby_Girl's picture
Replies 4
Last reply 7/13/2019 - 10:55pm

From what I have gathered it would be ideal not to be on antibiotics before or during immunotherapy because the antibiotics also kills the good bacteria that is your gut. And there is research and studies that say the gut plays a role in your response to immunotherapy. I have not taken antibiotics in YEARS. Then of course I get a toothache and need a root canal and had to start antibiotics. I have had 4 treatments of Opdivo so far. My oncologist approved the antibiotics and cleared me for the root canal.
So my question is- Have the antibiotics hurt my chances of responding to the immunotherapy?
I tried to hold off on taking the antibiotics but the tooth pain was too much. I am stage 3 and taking Opdivo as adjuvant therapy.

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jmbaker4's picture
Replies 10
Last reply 7/15/2019 - 5:43pm

Hi everyone! Just background—found a spot on my ear In April. Have had “precancerous” places before removed, so I headed to dermatologist. After 3 weeks of waiting bc it was sent to 2 pathologist, I was diagnosed with .9 with ulceration Mel. After visiting a couple drs about 4 weeks apart, I finally had an ear resection and 5 lymph nodes removed. 1 came back positive. So waited 2 weeks to see oncologist and was diagnosed stage 3a. Had a pet scan yesterday and it was all clear!!!(YES!!) I meet with oncologist Monday to start Obdivo. I am a kindergarten teacher and pretty scared bc of side effects I have read about. I know everyone is different. I am so glad I found this forum, because I can’t talk to many people about melanoma. It’s a different kind of cancer and everyone tries to compare it others. They want to know why I have no answers at certain points and why we have to wait on everything. It gets very frustrating!

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Summer S.'s picture
Replies 3
Last reply 7/15/2019 - 8:16am
Replies by: marta010, Summer S., Bubbles

Hi everybody,

Does anybody have an experience switching from Zelboraf to the Taf/Mek combo?
How did it go?
Does it still work if you have already progressed on "Z"

Am just really confused and a little scared now

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Thank you to all who have my best interest "as usual " you all rock! MarkDC, mark r, Paul, RichInLife, Edwin, my Socal Sister Julie!!, Jackie and Bubbles!!...
MarkDC asked about my met count, i have 2 mets in left lung, 2mm upper and 12mm lower, right lung has only moderate pleural effusion..
Sigmoid (intestine) met confirmed Melanoma about 1 to 2 inch in size (dr. wasn't sure of size but thats what he said, 1 to 2 inch.) and its 18cm in from my rectum...
1 possible met on my anterior wall of stomach (biopsy was not done, thats the one i was gunna have removed yesterday! Chances are its melanoma, its like a golfball now)
Biopsy is still being reviewed to my right butt cheek that i had done last Tuesday.....
And Jackie, thanx for the offer in your nape of the woods! Really nice of you!!
So, basicly only 3 confirmed mets others are very well possible knowing my track record...
Anyways, you all are the best, lets what happens with the Oncos at either Sunset or Riverside Kaiser AGAIN! (Broken record )....

Im Melanoma and my host is Mike..

www.covvha.net

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Affected's picture
Replies 11
Last reply 7/12/2019 - 3:03pm

Hi Everyone,

My husband was diagnosed with desmoplastic melanoma 3 weeks and 2 days ago. He is 55 years old, and we have 3 children.

It began with a small non-pigmented bump on his neck right below his ear. We were informed 2 days ago that his PET CT/scan results were clear: no cancer in his lungs, liver, or bones. Next Tuesday (July 16th) he will have an FNA biopsy (fine needle aspiration) on his lymph nodes as the scan cannot detect cancer spread in that area. The following Tuesday (July 23rd), he is scheduled to have the following procedures all at the same time: a SLNB (Sentinel lymph node biopsy), tumour removal in his parotid gland (parotidectomy), and a CLND (complete lymph node dissection). The consultant wants to perform the CLND regardless of whether the SLN is positive for the cancer or not.

I am very scared about the CLND as I believe the lymph nodes are there for a reason. Upon asking the consultant whether the CLND was necessary, he responded that that is what he would do if it were his father. I appreciate the fact that his answer was personal, and he seems to be a very nice and competent surgeon, but I am still very much concerned whether the CLND may compromise my husband's treatment after surgery or whether it is beneficial at all. Upon asking the doctor about several immunotherapy drugs, he said he couldn't answer me as he was not the oncologist or specialist in that area and that that discussion would come after the surgery.

I am determined to learn much more about melanoma in order to be of some help and support, but given that the CLND is scheduled for a week and a half from now, I am very humbly asking for any advise or thoughts on my husband having a complete lymph node dissection under the present conditions.

Thank you for your much needed help and support.

An affected wife

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