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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ScaredV's picture
Replies 11
Last reply 7/6/2014 - 7:50pm
Replies by: brittanyx, ScaredV, Anonymous, AmandaLivingston, Janner, Gene_S

Hello everyone,

I'm sad to be posting here, but hoping to find some support and answers.

My fiance was diagnosed with melanoma in April.  The lesion was 2x2cm and it was on his jawline.  It looked like a patch of eczema. Long story short, he had this spot on his face for 5 years, we were told it was a fungal infection, he took all sorts of creams for it, it didn't go away.  Finially a dermatologist decided to biopsy it and it turned out to be melanoma.  Since it was a large spot, only part of it was biopsied and we were told it was only .34mm.  

He had the WLE surgery preformed but they did not check lymph nodes at that time due to the fact that they thought it was only .34mm.  After the surgery, we found out at it's deepest point it was actually 1.23mm with a mitotic rate of 2 (this was only at the deepest point,  there were all different depths and some areas were in situ).  The surgery was a success and the margins were clear.  The surgeon who did the WLE did not want to test his lymph nodes but his dermatologist has decided he does want to test the lymph nodes so we will be meeting with a second surgeon in the next few weeks.  

This whole experience has caused extreme anxiety for me.  I am so worried about him and just want him to be ok.  I do have a few questions that I'm hoping you all can help me with.

The first question is, why does one doctor want to go ahead and test the lymph nodes and one does not? What is the best course of action to take now?  I realize that because he already had surgery, the lymph node testing is not as accurate.  

Are there any risks we should know about when testing the lymph nodes?  

My final and most important question is considering this new information and the location of the melanoma, what are the chances that this has spread to the lymph nodes?  I am so terrified of hearing the results of this and I am unsure what the chances are that this may have spread.  I realize every case is different but if anyone has any numbers or experiences they could share, I would greatly appreciate it.

Thank you so much

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/6/2014 - 5:09pm
Replies by: Anonymous, Janner, CHD, washoegal, Fen

Hi everyone!  I have posted on here several times.  I will be honest- I'm panicked.  My hip has been aching for about two weeks and I'm afraid it's bone mets.  I'm currently stage 1b, but I can't get over this fear.  I've only been diagnosed for since the beginning of April.  I may just be paranoid, I don't know.  It's like an achey feeling- sometimes feels achey in my back too.  The other piece is I have a 5 month old baby too- she is our first and I don't know if any of this is from her- even though it's just now starting to feel achey.  Thanks for your thoughts.  I hope all of this makes sense- :)

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/6/2014 - 5:59am
Replies by: Kim K, Anonymous, washoegal

CT found questionable areas on chest wall and axilla, surgeon said too small to worry about. This exam I found small enlarged nodes by my collar bone - again surgeon said too small to worry about. I'm thinking of just opting out of scans and visits until something just jumps out. One year out from initial dx IIIB, mitosis 18, one positive lymph node.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2014 - 3:46pm
Replies by: Bubbles, Socks

I'm a little confused about this, I know it limits some treatment options. Is this a good thing or bad , does it changes recurrence chances.

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CHD's picture
Replies 8
Last reply 7/5/2014 - 12:29pm

Hi,

As someone who's been dealing with vulvar melanoma since May of last year, told my prognosis is poor (though determined not to live my life in fear based on statistics), I sometimes wonder what the surgeon/oncologist mean when they say come in if you experience anything unusual.  I wonder this because my own melanoma was essentially asymptomatic and hidden so well, I only noticed a small amount of itching, and by that time it had already grown to 2 x 3 cm.  If your melanoma has metastasized, I was wondering today if you would mind sharing some of your experiences with this.  If the metastasis is internal, ARE there unusual symptoms? 

What stage was your original (primary) melanoma?  Were lymph nodes involved?  How long between the original diagnosis and the spread of the melanoma?

Most of all, I am wondering what kind of symptoms you had developed, if any, when the metastasis was discovered?  If internal, were you symptom-free?

If not, did you develop pain in a certain area?  Headaches, body aches, some other unusual symptoms?  

Or was it found on routine PET-CT screening?  Was it found accidentally on some other diagnostic test?

Based on my own experience, it is hard to imagine that if my melanoma progressed, I would have any recognizable symptoms at all, at least not right away.  Or would I?  It's kind of unnerving.

Cheri

 

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Ginger8888's picture
Replies 2
Last reply 7/5/2014 - 8:47am
Replies by: Ginger8888, Anonymous

I've been reading that people are getting 3mg of Yervoy and i just looked at my report and it says i'm getting 200mg..I'm confused....Can anyone help me figure this out?..200mg seems like a lot compared to the others..

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Ginger8888's picture
Replies 7
Last reply 7/5/2014 - 12:47am
Replies by: Ginger8888, jogo, Rod, LuckyMan51, Anonymous

I just finished my second treatment of Yervoy today, hoping i handle it as well as i did the first round..Anyone have any advise? Currently stage 3C

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/4/2014 - 10:03pm
Replies by: BrianP, Anonymous, Gene_S, shanemcdonald99

Just came back from an appointment with the local oncologist who administered my chemo (I am a patient at Sloan). He told me that melanoma can possibly be cured at stage 3 by chemo but if it hits stage 4 it is not considered curable. Since the recurrence rate is so high does that just mean that dying is the only option when the scans come back positive?

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/4/2014 - 9:36pm
Replies by: Anonymous, Ginger8888, BrianP, sweetaugust

After doing so much reading on melanoma after being diagnosed stage 1b- does your immune system truly help fight off melanoma?  It seems that there are so many contradictory statements.  Also- if your immune system is healthy- could it kill any random melanoma cells that may be floating around in your body still?   I'm just trying to grasp all of this.  

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uhoh's picture
Replies 2
Last reply 7/4/2014 - 8:55pm
Replies by: uhoh, Janner

I had a wide excision today on my right deltoid fpr a superficial spreading melanoma. The biopsy staged it at 1a. Some ulceration was present today where the biopsy was taken that was not present before. There has been no indication of lymph node inovolvement. No nodes were sampled or removed. 

I know not to get the wound wet for 2 days. And I need to keep my arm/elbow/hand elevated above my heart. But I can't remember how long I am supposed to keep it elevated. Can anyone point me to postop instructions that mention length of elevation with no lymph node involvement?

Thanks!

 

 

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ecc26's picture
Replies 2
Last reply 7/4/2014 - 6:47pm
Replies by: ecc26, arthurjedi007

Hello everyone,

Not sure if anyone out there can help me on this, but I have a side effects question:

I was on the BRAF/MEK combo all winter, which meant I didn't spend a whole lot of time outside most of the time I was on the drugs. They began to fail in May and by that time I had noticed that I had developed photosensitvity (sun sensitivity) as a side effect. That wasn't terribly surprising, but they combo began to fail in May, I had a 1 week washout, then began the Merk PD-1 EAP. I just got my second dose this past week and so have been off the combo for 5-6 weeks. I still seem to have some photosensitivity, as well as some folliculitis (basically body acne) on the backs of my legs. I have not found anywhere that states that these are possible side effects of PD-1, so I am assuming they are leftover from the combo. 

My question is: has anyone else had lingering side effects after coming off the combo, and if so how long did they last?

Thanks for reading!

 

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NYKaren's picture
Replies 20
Last reply 7/4/2014 - 2:14pm

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

Karen

Don't Stop Believing

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Anonymous's picture
Replies 3
Last reply 7/4/2014 - 11:53am
Replies by: Bubbles, Anonymous

http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Be031bb22-0506-4216-bb0c-6ae56273e834%7D/primary-melanoma-regression-not-linked-to-sentinel-node-status

 

Histologic regression in primary melanomas ≥0.75 mm was not associated sentinel node involvement, according to results of a retrospective study

 

The findings suggest that sentinel node biopsy in thin melanomas with regression may not be appropriate without additional adverse prognostic factors, the researchers wrote.

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uhoh's picture
Replies 9
Last reply 7/3/2014 - 10:42pm

Hello,
My new PCP wants me to be seen asap for a suspicious melanoma and not even wait the usual 3-4 months for an appointment. I have had this lesion for years and I can't remember how or when it may have changed. Due to another cancer I have just completed treatment for, this PCP is not ignoring the potential for another cancer. The good news he said is that I've had this 'whatever it is' for years now (ignored several times by another Dr I showed it to), but we know now that I am one who already has had cancer. 

There is a near by plastic surgeon at a community hospital who has multiple openings in his schedule. I like community hospitals and docs. I also want the best diagnosis and treatment. I live a few minutes from an NCCN center where I already see a gyne oncologist.

So far I do not have confidence in the plastic surgeon I have an appointment with. Funny, that I had a choice of appointments for the following day and several other optins for the next few days is somehow not comforting. The plastic surgeon has not published in around 30 yrs and I know that should not indicate his skill and knowledge, but I can't find anything about this Dr except that he is licensed.

How important is it that I see a specialist for an initial consult? How important is it for a specialist to perform a biopsy, or excision? Is the Mohs procedure done on flat upper arm lesions? Would a Dr do a biopsy first and then decide on excision vs Mohs?

What are some questions I might ask during the first consult. I am not even sure if I'll keep the appointment or try to find another Dr. first.

Thanks.

 

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Hi guys,

Who will be the winner of this competition?

As long as you are whith those drugs much better for you....

 

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