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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Raco's picture
Replies 7
Last reply 3/21/2018 - 9:45am
Replies by: Linny, Raco, 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 





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Replies by: TomW, keepthefaith11, Anonymous, Bubbles

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.


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Roxanne218's picture
Replies 3
Last reply 3/21/2018 - 4:19am

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.


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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 13
Last reply 3/18/2018 - 12:23am

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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Replies by: CancerSpouse, Anonymous, doragsda, Bubbles


I have just been told that I have Stage 4 metastatic melanoma of the liver/lung/lymph nodes.

I am currently researching physicians to see and places to go.  I have an appointment with a local oncologist in Ventura County.

I also have appointments with Dr. Hamid in Santa Monica and Dr Kim Margolin at the City of Hope

My wife would like me to consider MD Anderson (possibly starting out at Scripts as they refer to MDA), Also Cancer Centers of America and/or Mayo Clinic.  I am not so inclined to leave the state.  Is the care better??

We would love and appreciate suggestions.  We have no idea of what to expact.


Thank you,



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jjk17's picture
Replies 5
Last reply 3/19/2018 - 8:40am
Replies by: jjk17, Edwin, marta010

Hey Y'all!! I know I haven't posted in a while, things have been pretty uneventful which is ok! I will be on Infusion #5 next week. My question for anyone is, has anyone expierenced headaches while on the Optivo?? I have been having then quite freaquently during the week and no matter what i take really takes them away....My Oncologist said that this shouldn't be a side affect and possibly wants to get a brain MRI. Just wanted some input.

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Adam-MRF's picture
Replies 3
Last reply 3/19/2018 - 5:57am
Replies by: dessie, Anonymous, Adam-MRF

Good morning,

The Melanoma Patients Information Page (MPIP) is a free and open forum for those affected by melanoma - either as a patient, survivor, caregiver, friend or loved one - to share their experiences, connect with others, seek information and offer encouragement to those in the community. MPIP members come from a wide variety of backgrounds and represent a diverse sampling of diagnosis types, therapy plans, treatment outcomes and more. While a difference of experience or opinion may lead to respectful discussion or even courteous disagreement, it is important that this forum remain a civil, open and welcoming environment for everyone who seeks it out. Please take a moment and review the Forum Policies and Code of Conduct that govern the use of this discussion board. Note that while the MPIP is a forum of, by and for its users, the MRF does reserve the right to remove posts that violate these policies and, if necessary, revoke the posting permissions for repeated violations.

Thank you for your continued use of this important resource and ongoing help to maintain an open, welcoming and supportive environment.

Adam, MRF

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Amanda&#039;s Mom's picture
Replies 5
Last reply 3/19/2018 - 7:56pm

My daughter now has to decide on a clinical trial of Cavatak & Ipi or standard of care of Tveck(sp?).  Has anyone done this trial?  ANy suggestions?  She is 34.  

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I am new here, and to this, and sorely need advice from people who know, please! 

I was diagnosed with malignant melanoma on Feb. 7th, one week after having the mole removed from my leg.  

I have been in a bit of denial, I guess.  I finally consulted with a surgeon the last week of February. 

She wanted to do a wide excision on my leg, and sentinel lymph node removal / lymph node dissection (removal?) all at once, hopefully in March.  

However, due to scheduling difficulties twixt surgeon and plastic surgeon, I just got a surgery date of April 9th, which is over 3 weeks away, and two months since my diagnosis. 

Is this typical, or is this too long to wait?  

I don't feel like I have many options -- terrible insurance -- but should I be exploring further?  

This hospital (Virginia Hospital Center) is well-rated and geographically convenient to me, so I feel lucky to be scheduled there. 

But my father is panicking and wants me to check out Cancer Treatment Centers of America. 

For what it's worth, the mole removed was pretty deep, 1.9 mm, non-ulcerated, "clear but narrow margins."  It looked scary for over a year before I had it removed, so already feeling quite pessimistic and don't know if that's clouding my judgment.

Thank you for any advice/thoughts!

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vp sf's picture
Replies 5
Last reply 3/15/2018 - 2:48pm

Hello everyone.  I've appeciated reading your questions and answers.  Wondering if you could provide some thoughts on my husband's situation/treatment.  He's 73, diagnosed Stage IV in January with mets to brain, lung and liver.  Had Cyber Knife on the two brain mets, and is on Nivo, which he tolerates well so far.  Will have first follow up scan next month.  He's at Kaiser Northern California and feels comfortable with the doctors/system, so he hasn't wanted to transfer to a melanoma research facility, like UCSF.  His onc (who treats all melanoma patients at Kaiser but is not a melanoma researcher) says that if he doesn't respond to Nivo we will discuss adding Ippi (but wants to give the Nivo a chance due to the increased toxicity of the combo) and look at clinical trials.  This makes sense to me based on everything I've read--BUT here's my question: So many here say to go to a melanoma specialist and seem to be participating in trails that I wonder if we are being too...passive?  It would be up to me to push my husband to leave Kaiser if I thought it was crucial.  I want my husband to do what feels right to him...but I don't want to regret not being more agressive is agression is what's called for to keep my husband alive.  Would appreciate your thoughts.

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Richelleras7's picture
Replies 1
Last reply 3/14/2018 - 6:12pm
Replies by: Janner

Hi everyone,

Im new here. Was just diagnosed 2 days ago with stage 1. I’m only 35 and have 2 little kids, 3 and 1. I am so so scared. I have my surgery on Tuesday to remove more. After the initial biopsy it is .38mm. Any advice would be appreciated. Thanks

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