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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nat75's picture
Replies 2
Last reply 3/20/2018 - 11:06am
Replies by: nat75, ThinkingPositive

I posted a couple times on here about mole and last was about nurse telling me  biopsy was abnormal. I was stressing out, when I went to app dermatologist told me biopsy was basal cell I was pretty relieved. But while doing exam he found something called cutaneous horn on back of my neck. He said often it turns out to be squamous cell and took another biopsy. At this time I was pretty  numb with good news bad news...so couldn't really think of questions I should ask. I know his is a melanoma board but does anyone have any experience or info about cutaneous horns? Does anyone know of a good squamous cell board or site ? I cannot find much information on this subject.

Also my first biopsy site has a black spot in it.. .I didn't have stitches does anyone know what might be causing this? After this new subject I'll stop making new post here since I don't have melanoma, thanks everyone for your help in my last post

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Shelby - MRF's picture
Replies 4
Last reply 3/21/2018 - 12:09am

Dear MPIP Community:

We have secured several dates for the MRF's 2018 Patient Symposia Series and I hope you can join us at an event near you. Registration for most events is now open and draft agendas can be found on each event page. Register for a symposium by going to our Educational Programs page. 

Here is the current list of patient symposia. 

  • April 7 - City of Hope Cancer Center - Duarte, CA
  • April 14 - Northside Hospital - Atlanta, GA
  • April 20-22 - CURE OM Patient Symposium - Denver, CO
  • May 5 – The Ohio State University/The James – Columbus, OH
  • May 11 - Abramson Cancer Center/UPenn - Philadelphia, PA
  • May 14 - UNC-Chapel Hill - Chapel Hill, NC
  • May 19 - Seattle Cancer Care Alliance - Seattle, WA
  • September 21-23 - Pediatric Melanoma Summit - Grapevine, TX

We hope to add a few more soon. If you have any questions, please let me know at education@melanoma.org or (202) 742-5945. 

All the best,

Shelby - MRF

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Hukill's picture
Replies 2
Last reply 3/19/2018 - 9:07pm
Replies by: CancerSpouse, Bubbles

I had just read where you can get nivo at 480mg every 4 weeks instead of 240mg every 2 weeks. I went to get my 41st treatment friday and my dr put me on the 4 week schedule which was great for me. I have been driving 5 hours round trip every other week since 06/2016. I do not feel any different from the higher dose and my dr told me I should not at this stage. 5 more treatments then we plan on stopping.

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tedtell1's picture
Replies 2
Last reply 3/19/2018 - 7:16pm
Replies by: tedtell1, Bubbles

Greetings;

I have been kind of miserable after my second treatment. I am getting NIVO every two weeks. Finally so miserable with soreness in all my sinuses, throat and coughing I went to ER. Diagnosis; Uvulitis; swelling of the uvula. Has anyone had that. Once doc looked down my throat he could see it was inflamed. Negative for strep and flu. Doc says no way of knowing if it is reaction to therapy or virus. Thoughts anyone. Had an oral steroid and it seems to have calmed down a bit this morning. Still lots of coughing and uncomfortable, and I really need to go back to work tomorrow. Any one with similar experiences?

Thanks,

Ted

Ted

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Hi everyone,

I was diagnosed with Stage 1 superficial spreading melanoma on my shoulder blade in 2015. 

I’ve been going to 3 monthly skin checks since.

I had my Dr remove a larger mole from my mid back 2 weeks ago, which I was notified the following day is atypical, lots of changes happening.. I head back today for wider margins.

Is this normal for Atypical moles? 

Any idea how much gets taken as a rule of thumb? I’m guessing not as much as when they took wider margins for my melanoma but just want to know what to expect.

I haven’t got the path report yet.

I’m located in Qld, Australia.

Thanks.

 

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Brent Morris's picture
Replies 6
Last reply 3/20/2018 - 8:36pm
Replies by: Mat, Bubbles, bjeans, GeoTony, vivian, Anonymous

Is MPIP a greeting card or a platform for patient advocacy?  Can’t we do both?

Having seen the debate for several days precipitated by the limits of the forum being pushed and at times exceeded, I think it is time to ask a basic question:  Is this forum to function only as a source of emotional support?  In other words, is it to be solely an “online greeting card”?  One that can simply say: “So sorry.” “Hang in there!” or “Great!” - in other words - thoughts and prayers.  Without a doubt support is incredibly important.

However, anyone who deals with serious medical conditions like melanoma knows that the interface with the medical system is difficult and fraught.  Medical professionals and doctors in particular, are far from perfect. They are often time challenged and poor communicators.  Everyone has learned that the best you can do by yourself and for your loved ones is to be your own advocate.  Advocacy means that you attain as much knowledge and understanding as you can about your specific disease and you participate in shaping your care by taking an active role with those who care for you. You cannot have that knowledge and understanding without substantive information.  In fact, those without a “medical” background often benefit from translation of clinical data into common sense.  If there are individuals with the ability and willingness to digest and present the scientific and medical jargon into real life terms then I think they should be valued and encouraged.  The inclusion of the sources is a real benefit as well.  Not only to those with the interest in reading the data for themselves, but as a resource for their providers, and proof that the information is authentic.  This is the key to advocacy.  It is the way to help patients shape their own care.  It is sharing knowledge and understanding.  Providing information is not the same as telling or deciding for others what to do, it is enabling advocacy.  To me that is an essential and unique role for this forum.  Let the forum be the best that it can be!

Brent Morris, MD

BMorris

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Antonio's picture
Replies 3
Last reply 3/25/2018 - 3:01am
Replies by: Paulajane, Antonio, Janner

Hey there 

I m a member who lives in Italy . My father  , 75 years old, was diagnosed for an atypical spitz tumor in 2005. Tumor was successfully removed but in 2014 they Found mets on his lymph nodes that were surgically removed. 

His case was really complex and rare but we were confident that the mets would no spread in other in other parts of the body . 

He had a scan a couple of weeks ago and doctors found mets on his lungs and liver . We were all shocked .

He s a braf negative and will start a immunotherapy very soon . 

He lives on a sunny island, and  doctors advice him to have some sun protection when he goes out . Has anybody experience some sunburn from opdivo 

But most important question does anybody knows more about atypical spits tumor that  is rare ,and with  unpredictable potential . 

Thank you this forum is just fantastic!

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Raco's picture
Replies 8
Last reply 3/24/2018 - 10:19pm
Replies by: Raco, Linny, dessie, Bubbles

6days ago on March 12, 2018 I had CLND under my left are, my Dr noted that he removed a 

sack of lymph nodes and sent to pathology. No results yet.

question: Has anyone had issues with the back of

my upper arm feeling numb and from time to time I 

get needle pain around the 5.5” incision area. 

Will not see surgeon until end of next week for follow up 

And to have my drain tube removed, as of now

i getting about 4.oz in each 24 hr period but it will

be removed When it’s down to 1oz every 24 Hr period

THE next plan is to start on Opdivo every two weeks for a year

any feedback appreciated 

RACO

 

 

 

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My father was just diagnosed with stage IV on 3/5/18. His PET scan on 3/2 revealed at least 20 lesions in his brain, and metastasis all over his body including brain and bones. My family has been through a roller coaster the past 2 weeks and we’re looking for any encouragement or advice as we navigate through this new world of cancer.

He was hospitalized on 3/4 due to swelling in his brain, they began full brain radiation on 3/5. Dr. Panares is his oncologist at St. Jude, however we have not been thrilled with his treatment plans or aggressiveness.  We have a family consult with Dr. Hamid at Angeles Clinic on Monday and hopefully will see if there is anything more they can do to treat this.

His team at St. Jude does not seem to work together in a timely matter, when every second counts this becomes very frustrating. We have an oncologist, radiation oncologist, neurologist, and ICU doctor all working on this yet it seems they all have different ideas on what is happening.

My dad is unable to walk much, speak or swallow, although he does still understand what is said to him. We realize that at this point he is probably not eligible for clinical trials but are wondering if anyone else has been in this situation before and what you recommend? Or any advice on Hoag hospital, USC, UCI, or UCLA?

Any advice is appreciated- thank you all and thankful that this forum exists!

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geriakt's picture
Replies 4
Last reply 3/18/2018 - 9:47pm

I was diagnosed as 3B April 2015. After tumor removed and nodes removed in Sept 2015 I entered in to a clinical trial of 50 weeks of NIVO (25 treatments of Nivo). During that time  and until November 2017 I have had full body CT scans every 12 weeks. All negative. I finished Nivo treatment Sept 2016 and now I am on CT scans every 6 months.

My question is when can I move to CT scans every year or just stop. The CT scan are very expensive at about $5000 each out of my pocket.  I stopped contributing to the clinical trail because the CT scans at the treatment hospital cost $5000 each out of my pocket since I have a high deductable.  My other option is having CT scans at an Imaging Center for $2500 each.

Tom

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Hello fellow mel patients. I am newly diagnosed with a 2.6mm, non-ulcerated, and clear margins on path report after WLE. 2nd report followed from DecisionDX Melanoma saying my turmor is a class 2b, which is  high risk! Anybody else opt for the Decision DX test and receive worse results than your path report as what happened to me? What were your next steps after receiving class 2a or 2b results? PET scan? adjuvant treatments? I'm not sure what to do now. I prefer the Wait and See approach, but it may not be the best for me at this point. Thanks for reading.

Roxanne

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Anonymous's picture
Replies 4
Last reply 3/17/2018 - 11:13am
Replies by: kst, Bubbles, valuad

Ten days following my first treatment with IPI and NIVO, i developed colitis that set me back nearly two weeks.  Did anyone else have a reaction like this so early on?  How did it effect your treatment going forward?  My Oncologist feels I will not need any treatment since he believes my immune system is elevated and should be attacking my tumor(s).

 

Any thoughts on this?  Thanks,.

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samiam's picture
Replies 6
Last reply 3/20/2018 - 10:21am
Replies by: samiam, Jamie1960, Janner, Anonymous

Two weeks ago, I went to my dermatologist for an abnormal mole on my mid-back. I'm a 34 year-old male. The derm did a punch biopsy and the results have come back positive for "malignant melanoma  approximately 0.2 mm in thickness." The notes say "The melanoma is only focally present in the dermis. The lesion extends to the lateral margins." it also says "Abnormal melanocytes disposed as solitary units and in nests are present within the epidermis and the upper part of the dermis"

Other information from the pathology report:

Mitoses/mm^2: <1

Regression: present

Ulceration, intravascular involvement, satellite metastasis, and neurotropism are all absent. 

T classification: T1a

Now, I thought the T1a classification and 0.2mm thickness was relatively good news, but my dermatologist wasn't willing to comment much and said that we still won't know the stage until I get a wide excision (scheduled two weeks from now). I definitely was not getting "good vibes" from her about my outlook, but I may be looking for the worst.

My questions: Is the stage determination (T1a) from a punch biopsy unreliable? Should I worry that regression is present? Do you see anything else that would cause you to worry about this being more than T1a?

Thanks for your help in advance.

 

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AndyZ's picture
Replies 11
Last reply 3/16/2018 - 10:34am
Replies by: AndyZ, laulamb, Toby0987, doragsda, Rob578, tedtell1, Anonymous

I was found a month ago with a 1.2 mm (the second biopsy although showed 0,54 mm, no mitotic rate, Clark level II, no micronetastasis, clear margins) I had wide escidion and Sentinel Node biopsy which the told me today-after 10 days- it came positive (although it was not swallen and seemed fine). I fainted and panicked. Can not breath since. But they told me that this just a first estimate and I have to wait for the final biopsy which will be ready next week. 

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Bubbles's picture
Replies 17
Last reply 3/28/2018 - 7:11pm

I felt so incredibly lucky today.  I was able to piddle about in my yard with the love of my life, feel the warming breeze on my face and see one more spring.  Melanoma is more than able to take that moment, this day, from any of us.  So as I tried to soak in the spring beauty that life afforded me once again, I thought about things.  And first and foremost it was this...

You folks have been so kind and generous as to give me a shout out once or twice.  It really warmed my heart and gave me strength to continue whatever it is I do.  So I felt the need to return the favor.  Ed has provided so much incredible information and support to me in particular, as well as so many others on this forum.  I know that my posts can be too wordy and "sciency" (I like that new word, my dear Adriana's Rob!!!) for some.  Ed is amazing at finding the perfect web footage to fit the person in need!!!  We all learn different ways and are so fortunate to have the avenue he provides.  Additionally, he is ALWAYS ready to help those in the most dire straits.  He never turns away.  He steps up.  Giving us the best and latest in melanoma data and reports.

For me ~ he's made me laugh out loud more times than I can count.  Yes, Ed...I think you're very smart and funny!!!  Now don't let it go to your head!

We are all different peeps.  In all different stages of melanoma.  In all different stages and places in life.  It takes a village.  And this forum is an amazing one.  So....thanks to all of you for what you've shared with me all these years.  And thanks to my dear Edster, my mousie brother, for being you and for being willing to put yourself on the line for so many!

love, celeste

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