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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LindaSR's picture
Replies 6
Last reply 2/14/2017 - 1:12pm

My husband has been on the combination targeted therapy for nine months.  His October PET scan showed all mets gone except for two and those two significantly reduced.  His most recent PET scan last week showed a new hotspot in T9 with a score of 18.5 (in addition to 10 mets in brain found on MRI after a fall).  Our onco wants to stay on the combination and wait 3 months for another PET scan as he "does not want to give up on the targeted therapy yet."  I do not think this is wise and want to start him on combo. Ipi/Nivo immunotherapy immediately if not sooner.  If immunotherapy works it will also work on the brain mets (he is currently on day eight of wbr - i pushed for srs but onco said too many mets) Thoughts on if resistance is gradual or not and does it make sense to continue targeted therapy and wait and see.  I don't think melanoma is a wait and see cancer, it is a more aggressive cancer.  As far as having an oncologist who specializes in melanoma, I wish.  We live in BF west virginia and as it is travel 2.5 hours to Roanoke, VA to see oncologist.  No husband can no longer drive due to small seizure that occurred after his recent fall.  Any thoughts on resistance will be helpful.  I think I am going to have our onco. consult with Dr. Tarhini at UPMC at the Hillman Cancer Center for advice.  

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 1:12pm
Replies by: Anonymous

Hi, i wondered if I could possibly get some clarification. My hubby is stage 3a. There is no treatment at this stage in the UK, also no trials that he would be suitable for as the minimum requirement for eligibility seems to be above 1mm metastasis. Hubby was 0.5mm. 

I guess I just wondered if there was any other way to get something like ipi at this stage? Whether Self funding maybe through a private oncologist? Or is it not even available that way? Don't know why I'm asking really as couldn't even afford to self fund if that was a possibility probably - I expect it would cost tens of thousands. 

God I bug myself with questions!

Thank you all x 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 1:07am
Replies by: Treadlightly

 Long story made short in the early spring of 2015 I noticed a tiny pink/brown, perfectly round mole on my thigh.  several dermatologists told me it was normal. I was 34 when I noticed this mole.   In January of 2016 I asked one of them to remove the mole and they did a shave biopsy.   At this time it was about 3mm-4mm.   I had constantly been poking and prodding at it because it was bothering me since it did not look like any other moles.  It did not grow at all or change colors. 

I had to return and have margins removed.  I forget how much skin they took but I have a nice scar from the removal.  The dermatopathologist told me this was an atypical spitz nevus.  He said that the margins were clear and that the shave biopsy got it all.

I had not thought about the mole until I saw an article about a lady who had much larger mole removed, I believe 9-10 mm,  that was changing.  Her initial diagnosis was an atypical spitz nevus but then a short time later she had a swollen lymph node and it was diagnosed as a spitzoid melanoma by a specialist.  The article explained how sometimes they screw up the diagnosis of an atypical spitz and melanoma. 

I am trying to put my mind at ease somewhat.  I noticed this in the spring of 2015 and it is almost two years later.  If mine was a melanoma would something else have popped up ?  Like a swollen lymph node etc ?  Nothing has changes on my scar and I am perfectly healthy.  

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/8/2017 - 1:29pm
Replies by: AshleyS, Anonymous

I'm not sure what to expect from posting this, but felt compelled to share what I'm going through if only for the cathartic act of writing it down somewhere.

This past December, at 6 weeks pregnant, I went to the dermatologist to have a small pink spot (what I thought was a pimple or ingrown hair) looked at.  The derm suggested it may be cancerous, but that if it were, it would not be melanoma given its appearance.  None the less, he attempted to remove the whole thing.

Five and a half weeks later (yes, that is how long the lab results took), I got a call from him, saying it was cancer.  I asked what kind, and nearly dropped the phone when he said melanoma.  Apparently, I am one of those rare people with non-pigmented melanoma.

I went in that day to discuss the pathology report.  Breslow depth of 0.8mm, clark level II-III, no ulceration, no mitosis.  T1a, based on the available information.  They weren't sure, however, if they had truly removed all of it with the initial biopsy.

He sent me on my way with his recommendation for the WLE, as well as an ultrasound of the nearby lymph nodes in my groin.

Terrified, I did the ultrasound - it came back clear.  Then, the WLE.  I did not have the SLNB at the time, as it was not recommended based on my initial staging (but now I'm wondering if I should have, especially with the pregnancy!)

Now, we are still waiting for the results of the WLE report.  I am 15 weeks pregnant, and reading about how much more dangerous this stuff can be while pregnant (though admittedly, there seems to be a great deal of disagreement).

I am in shock, and terrified for myself and this poor thing growing inside me.  I know that T1a should be uplifting, but we still don't have the full lab results, and I've read that an ultrasound can have a 40% false negative rate. 

How do you live with the daily fear that this is spreading and they simply haven't seen it yet?  How do you bring a child into this world, when you aren't sure if you'll be around to take care of the little one?  How do ensure you catch it early if it does spread to the nodes, so you don't wake up one day with tumors all over when you were supposedly T1a? 

I feel so lost and angry and scared.  This is my first pregnancy, and it is nothing like what I imagined. 


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Kristenp's picture
Replies 6
Last reply 2/9/2017 - 6:47pm
Replies by: jennunicorn, Kristenp

My doctor did a shave biopsy of the top of my  right ear and it turned out to be melanoma.  She referred me to a dermatologist in Philadelphia to have it removed (I go Monday) and she sent me for blood work and a chest X-ray.  She didn't talk at all about seeing an oncologist, and I was so shocked by the diagnosis that I didn't question her.  I'm waiting until morning to call the office and ask some questions.  In the meantime, maybe someone here can help me out.  The pathology says the Breslow is at least 1.1, there are 4 mitosis/mm2, it has nevoid features, and is at least a T2A.  I'm completely freaked out, and the more I google things the more upset I get.

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Jenine's picture
Replies 1
Last reply 2/7/2017 - 8:58pm
Replies by: Bubbles

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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Jenine's picture
Replies 1
Last reply 2/8/2017 - 11:34pm
Replies by: _Paul_

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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btcedarr's picture
Replies 2
Last reply 2/7/2017 - 8:03pm
Replies by: btcedarr, Janner

I had a 1b melanoma, negative SLNB in Oct. 2015 and a severe atypical mole removed Oct. 2016 with a punch biopsy and clear margins. The punch biopsy  site is still itching 4 months later. Should I be worried that something new is popping up? I am now on 6 month check ups, due to be seen In April. 

Thanks, Barb

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Marydel's picture
Replies 2
Last reply 2/8/2017 - 11:54pm
Replies by: Marydel, KMick

Has anyone out there had a free flap to cover the skin removed on the top of the foot?

1. Did you have to stay in hospital after?

2. What type of protection did they give your foot?

3. When could you get up and walk?

any other info you could add would be great!

Marydel

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Anonymous's picture
Replies 7
Last reply 2/10/2017 - 2:46pm
Replies by: Sheepsandcows, MaPerny, Anonymous, _Paul_, David McCaw

Melanoma stage 4 with metastasis in lungs and spine

BRAF mutation

Not responder to IPI (Yervoy)  PD-1 Inhibitor (had to be suspended) and BRAF/Mekinist combo. Waiting to be approved for a new trial Atezolizumab and MTIG7192A

Residence: Canada

Thank you!

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Replies by: Anonymous, JustJaren

Hi All!

RIght now, after the WLE and SLN removal, the SLN came back with '3 to 4' cancer cells in the subcapsular region. Of course, the surgeon now recommends an inguinal lymph node removal. 

1.- I am having a hrd time committing to this surgery, knowing the original lesion was 0.86 with a mitotic rate of 1- I have an 80% chance of no other nodes being involved- should I torture my body and risk major complications for an extended life? (statistics say recurrence within 24 months as opposed to 36 months with the surgery)

2.- If I DO take the surgery- what were your experiences for recovery- specifically returning to a desk jobn, how long before you can drive, etc. 

 

I am overweight and know this increases my chances of complications significantly- BUT I am MOTIVATED during recovery- I had a partial knee replacement last year that I was off th emeds in days and back to work. I relaize this is very different, just lookng for some experiences/article references regarding NOT getting the surgery, patient experiences, etc. 

Much love to everyone!

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Daughter of Patient's picture
Replies 4
Last reply 2/8/2017 - 4:28pm
Replies by: jahendry12, KAF, MikeW, Tim--MRF

My mother was just diagnosed with malignant mucosal melanoma of the sinuses last week. She lives in the north suburbs of Chicago. She has an initial appointment with Dr. Jon Richards on Monday. Any recommendations for a doctor to obtain a second opinion in the area? Many thanks in advance.

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Bmine102793's picture
Replies 6
Last reply 2/7/2017 - 7:38pm

So we got ct scan and mri back and cancer has not spread and there was none found in the area where he had his tumor and lymph node removed. But because of the possibility there may be cancer cells floation around that arnt showing on scans we will go to cleveland clinic for a 2nd opinion and to discuss trearment so cells wont grow more. Has any one had a similar experience? What was your stage of remission. Is it possible it will stay gone for good

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Sophietx's picture
Replies 5
Last reply 2/7/2017 - 10:33pm
Replies by: Sophietx, Janner, UBContributor, Anonymous

Hello,

I had Melanoma in situ in Nov 2016. WLE and clear margins. I still get acne sometimes on my body and face. A pimple showed up about 0.5 cm near the scar. It showed up overnight. And it looks like it's healing now. It has been few days. How do I tell reocurence? Or satellite mets etc? Thanks 

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