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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wayward's picture
Replies 2
Last reply 11/10/2016 - 8:25pm
Replies by: wayward, Janner

My wife had noticed an abnomal spot on my back and asked me to goto the doctor I went to my GP doctor and she referred me to a dermatologist. The dermatologist did a biopsy and sent it to the lab and the results was that they found what thay called suspicious cells that could be precancerous. The dermatologist cut out that area along with a margin as a precaution. When they sent that to the lab the results was what he called stage 2 inside melanoma. He described the thickness as three sheets of paper and I'm not sure what that translates to in thickness. He said what happened to me was rare but does happen sometimes. He cut a larger area for a wider margin and the lab results was clear. I did have him do a full body scan and he did a bioposy of a mole but haven't got got the results yet. I will get the stiches out in a few days. I have a follow up every six months for the next two years at least.

The initial diagnosis was very scary but I do feel much better now.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/8/2016 - 5:42pm
Replies by: landlover, youngann, debwray

Yesterday I recieved my PET CT results from U of M and although I do not know exactly the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off),  the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it. 

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I have here to work it all out and for that I am thankful.

Peggy

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KDE's picture
Replies 7
Last reply 11/9/2016 - 4:46pm
Replies by: KDE, Janner, Anonymous

Doctor has told me that I have a melonoma in situ. The pathology report diagnosis does say in situ, however it list the pathologic stage as pT1a. So am I in situ or stage 1? The following is the info on the report. Thanks so much for any help with this. 

Final microscopic diagnosis: Melanoma; the in situ component extends to the tissue edge. 

Type: superficial spreading  

Tumor Breslow thickness: 0.35mm

Anatomic level of invasion: Clark level lll

Ulceration: absent

Dermal mitotic rate (mitosis/mm2): 0

Microsatellitosis: none identified 

Vertical growth phase: absent

Regression: absent

Angiolymphatic invasion: not identified 

Neurotropism: not identified

Tumor infiltrating lymphocytes: non brisk

Precursor lesion: none identified 

Pathologic stage: pT1a

comment: sections show a proliferation of atypical melanocytes in the epidermis and dermis. The junctional component is disposed in a confluent fashion with pagetoid upward scatter. The dermal component is present in small aggregates and single cells without maturation. 

 

 

 

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jennis3b's picture
Replies 1
Last reply 11/7/2016 - 5:25pm
Replies by: debwray

Hi friends,

I have an appointment Monday with Dr. Zager from Moffitt Cancer Center in Tampa, Fl. Has anyone had him for a doctor?

Just curious!

Thanks in advance! 

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/7/2016 - 5:16pm

I was diagnosed in April with 3B melanoma.  Currently participating in clinical trial and receiving keytruda at 200 mg.  Feel as if I just got over the anxiety of the first set of scans and now it is time for it again.  In the study it's written for every 12 weeks for pet/ct and annual MRI of head.  I'm wondering what the standard of care is in relation to scans?  Should I be worried about all the radiation exposure or is that the least to worry about?  Is the recommended interval every 12 weeks for two years?  Thanks so much..

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Dear MPIP Community:

Next week, I'll be recording a webinar for Stage III melanoma patients with Vernon K. Sondak, MD, Chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, FL. Dr. Sondak has a vast amount of experience in melanoma and surgical oncology and treats melanoma patients at all ages and stages. This will not be a "live" webinar, rather, I will be recording it with Dr. Sondak and his presentation will cover a variety of topics - including diagnosis, treatment and research specific to Stage III melanoma. The webinar will then live on our website and be promoted in a variety of ways.

If you have specific questions or topics that you would like Dr. Sondak to address, please email me directly at education@melanoma.org. I will gather all questions/comments and Dr. Sondak and I will work together to streamline those into a robust and dynamic webinar. 

Looking forward to hearing from you!

Shelby - MRF

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JoshF's picture
Replies 18
Last reply 11/9/2016 - 3:24am

I haven't been checking in much lately. So I hope this finds everyone well. I think often of all of you and pray you're well. I've had a lot of anxiety and crap going on in my head lately. Anyway, I was in Houston this week at MDA for 6 week scans post TCell infusion. So bottom line I'll take this as a win though as you can all attest to, we want better. The brain MRI showed nothing new which is great after having gamma knife Aug 19...big win! The CT Scan showed nothing new and minimal progression in few leisons. The team referred to a 3-8% progression. While we'd like things just disappearing, it's a process and I'm told it can take time as it been just over a month. So that leaves us committed to completing the trial in regards to treatments. So I did dose #3 of ipi(just an FYI with all treatment I've done...that was dose #10 of ipi for me). I'll go back right before Thanksgiving for final dose. Then in mid Dec we'll repeat scans and go from there. They're also going to biopsy a sub-q to test. Whew!!! This is a crazy life we live but I'm living and get to hug my wife & kids so I'll deal with it. 

Finally, I did have a few sub q's shrink up but not go away totally. Some of you will recall last posts asking questions about this. They (MDA) don't include that in progression etc..as it appears they're not measuring. Just that nothing new showed up. I'm scared and hope my immune system kicks into high gear. Though I'll take this latest news as positive since I've only been kicked down since May. Love and peace to you all!! Thank you for your unending support!!

Josh

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

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jvictoria's picture
Replies 3
Last reply 11/7/2016 - 1:11pm
Replies by: jvictoria, debwray, geriakt

Hi everyone,

Well, ended Nivo trial in June because of side effects and two small spots showing up in the lung. Subsequent follow up CT scans in August showed significant shrinkage; PET scan showed no uptake. Unfortunatly, CT scans last week showed significant growth of the lung nodules and a new spot on the liver.

Doctors have recommended a low dose IPI/Pembro trial so I was wondering if any of you have had experience with the combo. Looking to find out what to expect. Plan is to start the trial this Tuesday.

Any other thoughts are very welcomed also.

Thanks

Juan

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/7/2016 - 3:02pm
Replies by: youngann, Elizabeth19, casagrayson, Anonymous

Please can someone with personal experience give me an idea of whether this could be a form of nodular melonoma? Awaiting mole biopsy app. It is elevated on corner and is a pale/colourless lump

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Gigi17's picture
Replies 5
Last reply 11/7/2016 - 4:50am
Replies by: miaka618, debwray, Gigi17, Mat

Hi everyone. I was diagnosed melanoma stage 3c. I am now in a yervoy/opdivo trial with NED. I have just finished my first cycle. Since the first session I have had a horrible headache accompanied with sore eyes, ears and neck. My Mri, eyes, and neck all came back clear? This week my blood work showed I have hyperthyroidism and ALT is above normal. I'm wondering if anyone else feels this way? I've been put on various drugs to reduce the headaches but nothing works! I have yet to be put on prednisone. My oncologists are not sure the headaches are from the trial...but the neurologist and I do. I've never had headaches or issues with my eyes, ears and neck. My lymphnodes in my neck are double there size but do not contain cancer....any thoughts?

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Cathy M's picture
Replies 4
Last reply 11/6/2016 - 6:08pm
Replies by: Cathy M, Mat, Casitas1, Patina

I have read some posts of trying Keytruda or Ipi/Nivo after failing one or the other. MY husband is Stage 4 BRAF Negative. Failed Ipi, Mekinist (targeted), Keytruda, Temodar and will scan Nov 15 to see if he is responding to carboplatin/paclitaxel. He is in a weakened state and though onc offered referral to Scottsdale, AZ my husband doesn't want to travel the 8 hours to get there...Doesn't feel he can keep up with that and would do more harm than good. So if anyone has tried Ipi/Nivo after failing Keytruda I'd like to hear how you did or are doing. We are getting closer to hospice and I'm getting closer to a panic state. Thanks for any info.

Cathy

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Replies by: Gigi17, Anonymous

I had this large mole on my back for the past 3 years, never really noticed a change. I believed the center was always raised from the get go. I went to the local ER department to get it checked out. The 2 doctor's asked me what issues I had with it? I asked does it look like Melanoma and they told me to them it's fine, it looks benign and not to worry about it. I asked them if it looked deep and they told me no. I went to the local walk in on an unrelated matter and had him check out my mole. He looked very worrisome, asked how long I had it for and scheduled me right away to have it removed and tested. He said it look adnormal and had black spots in it. I asked him if it looked deep and he said it has some depth to it. Both there and the hospital it was a visible inspection only, touch it to see how it feels. The mole is not hard at all, you can move it around like a regular mole. Told me not to worry until the testing has been done. I am afraid what this could be, my mother had Melanoma but had it removed before it can spread. I have the removal surgery come Thursday, hoping for the best that it's benign but my head thinks differently. 

https://imageshack.com/i/plf6WmnVj

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/11/2016 - 4:16pm
Replies by: Anonymous, Toby0987

I was able to take a brighter picture of the mole from previous topic

https://imageshack.com/i/pnfMAIiWp

Just wondered what if anyone had any thoughts, if it looks serious, if i need a biopsy or if it even is a mole.

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WallyE's picture
Replies 2
Last reply 11/12/2016 - 10:30am
Replies by: WallyE, debwray

Please can someone explain to me what the following means as per an MRI scan done on 2/11/16:.

Small subcentimeter aortopulmonary lymph nodes measuring 5 to 6 mm

Small right tracheobronchial lymph node measuring 4 mm

A calcified grunuloma is noted in within the left lung base (the middle lobe of my right lung was resected)

A wedge shaped hypo density noted with the lower pole of the right kidney represents a small cyst measuring 7 mm

A simple cyst is noted in the upper pole of the right kidney measuring 5 mm

There is a rim enhancing heterogeneous hypo dense periphery enhancing lesion measuring 44 x 34 x 38 mm (APxTRVxCC) related to the subfundal region,and greater curvature of the stomach inseparable from and superior to the tail of the pancreas. This is suggestive of recurrent disease.

I thought I was fast approaching permanent NED when I had 4 years of NED last year - then Mets to my stomach (total stomach removal underwent in Nov 2015) and now this new thing,

What does this all mean? The doctors appear to be coy in telling me at this stage - they are going to discuss the way forward at a meeting on Tuesday 8/11 and will contact me on Friday 11/11.

Could this be Melanoma Metastases of the Pancreas?

Thanks all for a wonderful forum for discussion,

Wally

One day at a time.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/5/2016 - 4:28am
Replies by: Anonymous, Janner

https://imageshack.com/i/pmG45buYp

My friend said its a liver spot, but im not so sure.

What you guys reckon?

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