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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Anonymous's picture
Anonymous
Replies 12
Last reply 10/28/2017 - 5:31pm

Currently I am facing the following decision: lymph node surgery risking lifelong lymphedema or injection of much less  invasive TVEC vaccine directly into the lymph node .If it's not working, surgery.Has anyone done TVEC as a mono treatment for positive lymph node and did it work for you?Any feedback would be appreciated, thanks a lot.

T.Chasse

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TexMelanomex's picture
Replies 10
Last reply 10/28/2017 - 1:25am

Hey Warriors, I hope you are all enjoying your weekend and relaxing! I wanted to post a few very minor SEs I've noticed since my first infusion of Keytruda on Tuesday (for informational purposes only, not griping :)

1) Minor flu-like symptoms and fatigue (not enough to keep me home from work or being able to do all my normal things), this lasted only 48 hours and resolved by Thursday night.

2) Sunlight sensitivity. This could be from the PV-10 so I can't blame the Keytruda but this has consisted of my exposed skin turning light red and itching like crazy even after brief exposure to sunlight (i.e., the side of my face after driving for 10 minutes). I don't know if this has improved since I have made sure to cover up even more since this started happening. I can say there have been no rashes or itching since the first 48 hours and benadryl topical cream was very effective.

3) Night sweats and getting up to pee at night. These are new developments but tolerable...I suppose its better to wake up to pee a few times vs not waking up and peeing the bed! The night sweats don't wake me up, but when I do wake up in the morning, the pillow and sheets are soaked.

Overall, I consider these things pretty minor and they are pretty easy to adjust to.

Rock on Warriors!

Tex

 

Tex

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Nashvillian's picture
Replies 10
Last reply 10/27/2017 - 10:20pm

THere is so much nuanance to all this I wanted to ask a question. I know there are folks that have been on Opdivo on here but are there any newly diagnosed stage 3b that this is the first line treatment after surgery? I am stage 3b so that is where I am at. Took out 34 lymph nodes one being bad , but it was macrometasis sentinel in my parotid.

Stage 3b, Opdivo treament . Starting 10/13/17

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/27/2017 - 7:56pm
Replies by: Anonymous

I have had a faint dark line in my left thumb for quite some time. I was never concerned about it until I came across an article about nail changes and health. Now I am terrified that this could be something serious. I lost this nail when I was a kid after smashing my thumb in a car door. It grew back irregular but I have never experienced the discoloration. I noticed it probably a year ago. Could this be a subungual melanoma? Can nail trauma from 35 years ago manifest as a melanoma now? What are my next steps? Should I see my PCP or go straight to a dermatologist. Any encouragement is appreciated. Tried to post a picture of it but can’t figure out how. Thank you

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Anonymous's picture
Replies 4
Last reply 10/27/2017 - 4:57pm
Replies by: Twhite00000, Anonymous, MovingOn, Mat

So it looks like this may be the end of the road on Keytruda for me. I’ve had a more than 50% reduction in my Mets (mostly the lungs, liver and lymph nodes) on Keytruda, but recently had a medium sized new met pop up in a lymph node, possibly more than one. Looking at my options (based on doctor conversations and lurking), i see

1. Braf/mek inhibitors

2. Chemo or biochemo

3. TIL (although it’s unclear whether my Mets are harvestable)

4. Ipi + maybe Nivo

5. A pd-1 + experimental agent (lag-3, HDAC, IDO....others?) clinical trial

6. Something I’ve not heard of before - systemic vaccines? New mabs?

has anyone here had a durable CR after failing a year of Keytruda (that would be FANTASTIC to hear!)? What did you do? Anybody get a mixed response or durable remission afterwards? Any suggestions from the science-minded folks on here? Honestly BRAF targeted therapy is not very attractive to me since the disease is moving fairly slowly at the moment. I am not pain and/or brief misery averse.

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COspouse's picture
Replies 5
Last reply 10/27/2017 - 12:57am
Replies by: COspouse, Mat, sgreenberg

I’ve been a silent reader of everyone’s experiences for a while now.  Thanks to all of you for your collective insights - it helps to hear versions that are real-world and not just statistics.

Statistics.  I think that’s the biggest lesson, yes? Everyone is different, and until you roll the dice, you don’t know where you’ll be.

Our story: My husband had a lesion removed from his back in Aug 2015. Stage IIc.

Lung mets (3 + some too small for measure) popped up in May 2016. He entered the intermittent arm of BRAF/MEK in July 2016.... a good thing since fever became a big issue ... dose reduced almost immediately, and then again last month. Lung mets reduced (smallest ones went away).

We chose targeted therapy since he is a Type 1 diabetic.  We weren’t sure that immunotherapy would be kind to him, given his diabetes, and targeted vs. immunotherapy was presented as a tossup... so we chose the easier path... it seemed promising given lung mets only and LDH in more the normal range.

15 months of BRAF/MEK - a good run.  We hoped it would continue as life was reasonably easy despite fever and fatigue for 3ish weeks out of 8...

... but, here we go.

 

Brain mets showed up this week - 3 of them. In hindsight I look back at his primary tumor numbers - high mitotic rate, etc.  I’m glad (or at least informed) that I snapped a phone pic of the tumor statistics on his chart (they weren’t offered to me - I rifled through his chart).  He’s off the targeted therapy trial. New plan is gamma knife for the brain mets and ipi-nivo.

Wish us luck as we navigate side effects of immunotherapy vs. diabetes, and again, thank you all for sharing your personal journies.  I’m not afraid of the gamma knife for my husband, thanks to you, and ipi-nivo? ... well, it seems our oncologist is tracking well with the latest technology.  That’s reassuring, at least. :)  

-Bette

 

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Bradley75's picture
Replies 6
Last reply 10/26/2017 - 9:43pm

I found out last week that the pedicle met at T-1 has grown.  I have been in a tremendous amount of pain the past few weeks and we now know why.  What was once thought of as post surgery and radiation nerve pain is actually the tumor destroying my t-1 vertebrae.  The left pedicle has been destroyed and the the left t-1 vertebral body is now involved.  Damn those bone mets.  Keytruda has worked on everything else for me, but these back tumors.  My July surgery to remove the t-5 tumor was a complete success so here is hoping this one will be too.

The only thing that has me concerned is the damage done by this met.  The surgeon has suggested that some hardware will probably be installed back there to stabilize things.  That means screws and rods and a longer stay in the hospital.  Not looking forward to the recovery part either, but it has to be better than the current pain I am in. 

Now for the good news.  The PET and MRI show no other mets.  I am holding on to the hope that lucky # 7 could be the last surgery.  Given how this beast likes to show up all the time, it may not be true, but I am holding on to that hope right now.  I will give an update once the recovery process gets underway.

God Bless you all,

Brad

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Anonymous's picture
Replies 14
Last reply 10/26/2017 - 4:56pm
Replies by: Anonymous, MelanomaMike, Janner, jennunicorn, BrianP

A year ago, at age 35, I get a call from my dermatologist. He had finally agreed to remove a mole from my upper arm that I'd had since childhood but that had always looked horrible to me. He said, "I don't want you to freak out. You DO NOT have melanoma. But the mole on your arm is severly atypical."

A week later, I talk to the surgeon, wondering how much skin he'll have to remove because it's severly atypical and that sound serious to me. He looks at the report and says, "It's only moderately severe. This is nothing to worry about." He removes the same margin as he does for a moderate mole he's removing at the same time.

A week later, I ask for my report. It says:

"Atypical Intraepidermal Melanocytic Proliferation

Multiple step levels sections are examined and demonstrate an atypical intraepidermal melanocytic proliferation. Within the epidermis, there are moderately to severely atypical melanocytes scattered along the dermal-epidermal junction. Mart-1 staining highlights these melanocytes, as well as focal crowding. The differential diagnosis for these findings include an atypical lentigo or evolving aytpical junctional nevus. This process extends close to the margins of the sections examinned, and re-excision is recommended. This case has been reviewed by the Dematophatholgy Consensus Conference."

I google the term atypical intraepidermal melanocytic proliferation and am surprised to see it come up a melanoma in situ.

I call the dermatologist. Is he sure this isn't a malanoma in situ? Because I read this is a term used when they aren't sure, or want to give the patient the benefit of doubt because of young age.

Dermatologist says, "No, no, absolutely not. I know what terms the pathologists use when they're borderline or trying to decide, and I didn't see any of that. This is not a melanoma in situ. It wasn't even a close call."

A year later I switch to a new dermatologist. He says it's a melanoma in situ. Says nothing can be done about removal done a year ago.

I broke down in his office and haven't stopped crying. If I knew it was melanoma, I would stopped bc pills right away because of the estrogen instead of taking them for a full extra year! If I knew it was melanoma, I wouldn't have planned to try for a baby this last July! If I knew it was melanoma, I would have suggested I come in more than the once a year my old derm recommended! If I knew it was melanoma, I would have been less loosy goosy with sun care!

I was told it was moderately severe. Nothing to worry about. We don't know which abnormal moles turn to melanoma and which don't, so we remove them to be safe. That's all it is. Don't worry. Don't question. You've never had melanoma.

I am PISSED.

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Spl25's picture
Replies 5
Last reply 10/26/2017 - 3:41pm

Greetings all: I'm a stage 4 patient responding well (but not without some side effects) to Pembrolizumab.I may be looking at working a reduced schedule at my company (currently on medical leave), which would apparrently entail my losing group health insurance, but being offered COBRA for 18 months. Has anyone had a similar situation? How did COBRA compare to your group plan ( I realize they are *supposed* to be identical). Is there a way to retain group health insurance while on a reduced workload (does ACA *mandate* discontinuation of coverage)?

Thanks in advance, 

S

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ABlazek's picture
Replies 2
Last reply 10/25/2017 - 9:26pm
Replies by: RHG77, TexMelanomex

First, I want to let you know that I think that I have read through a huge amount of this forums historical posts while obsessing over my initial diagnosis and trying to learn about Melanoma.  I am amazed by the grace, compassion, strength, and knowledge present in the members of this forum. Thank you all for bravely sharing your journey and supporting others. It makes a world of difference!!  I will share my story, just so maybe someone else obsessing can possibly find something meaninful to them.

This is likely to be a long post, so if you don't have time to read-  but do have a recommendation for a derm in Houston, please fast forward to the end for my question about a dermatologist :-)

I have a family history of melanoma. My uncle passed away at the age of 26 from Melanoma in the 60's before I was born. So, honestly I don't know the details of his journey, but I did grow up aware that a mole could be life threatening due to the grief of my father for losing his brother.  My dad has had a lot of basal cell cancers, and regularly has his skin checked.  I have red hair (though more washed out now to blondish in my 40's), green eyes, and sun damaged skin.  I have had countless sunburns and unfortunately even spent a lot of time in tanning beds in my late teens and early twenties. I feel like such an idiot that I thought (at that time) that I could just burn my way to "base tan" and look like my friends with glowing bronzed skin.  I could puke now thinking about how I just didn't connect that sun damage to risky moles.

Anyway,  I had a little flat freckle (sun damage -not cute freckles) on my arm just below my shoulder change dramatically. It just got a whole lot darker and seemed to grow and extra mole attached to it. The signs that were most meaningful for me were definitely change, and ugly duckling. - althought my mole also was multicolored, asymetric and starting to elevate a bit. it was only 6mm in diameter.  I went to a derm that could get me in, and they shaved it off and called me with an In Situ diagnosis and transfered me to a surgical oncologist at MD Anderson.  MDA disagreed with the derms pathologist and staged me at 1A.   Breslow 0.30, Clark IV, Lentigo Maligna type, no ulceration, non-brisk.  I was surprised that a depth 0.3 could be Clark IV, but I trust MDA and can only assume that the skin near my should must be thin.

I had my WLE 2 weeks ago, and no other melanoma found and all margins clear. I am scheduled to have my stiches out next week, and then will begin the 3 month follow up appointments rotating between MDA and my own derm.  I know I am very blessed to have caught this early and to have a low risk melanoma.  Of course at night when I lay awake I wonder about that Clark IV (I know it doesn't matter any more, but they still report it!), wonder about how close my mole was to my armpit (could that mean one cell could have got to a node an inch away??), wonder if I have bad genes, wonder about every mole on my body, worry that all my headaches could mean a tumor, worry about my son... you know the story. In the light of day I feel a bit more reasonable.  It is odd to be told on one  hand you are likely cured, but on the other hand that we will see you every 3 months for year.  ~gulp... that both worries and comforts me!

Anyway, the derm I saw to just shave the mole off was just way to dismissive and quick with me. I really want someone who will take their time and answer my questions and seem to care.  Someone with a medical focus, not so much push on the cosmetic part of their business would be great too.  Can anyone recommend a great dermatologist in Houston for me to see outside of my visits with MDA.  Med Center, Kingwood, the Woodlands, and Spring areats are all a reasonable distance for me.

Thanks for "listening" and thanks for any recommendations. I plan to try to be one of those Stage 1 members who can empathize with the newly diagnosed, and the worriers like me, so hopefully I will get to know you all by posting occassionally. You are in my prayers and so many of you have touched my heart.

Thanks,

Anne

 

 

 

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GrossieGal313's picture
Replies 3
Last reply 10/25/2017 - 7:00pm
Replies by: Ed Williams, Bubbles

I met with my oncologist for the first time.

We will be persuing Immunotherapy as the course of treatment.

Most likely Nivo but we talked about BRAF as an option as well.  Will I go this route only if the mutation is present?  Nivo if not?

I'll obviously revisit my questions with oncologist just wondering if anyone has any inut or can recommend a good resource to understand more about Immunothereapy and BRAF.

Donita 

Donita

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MovingOn's picture
Replies 6
Last reply 10/25/2017 - 5:39pm
Replies by: MovingOn, Raeofsonshine, SamS, Julie in SoCal, Anonymous

Hi everyone, On Wednesday I see my melanoma specialist/Oncologist so I’m definitely going to ask her about this. On my neck dissection scar (healed back in Feb-March) I now have a red bump which is very superficial (seems like it is in the skin rather than under it). My wife and I think it is just a mosquito bite. The main thing which disturbs me is that it is exactly on the surgical scar (not off to the left or right by even a millimeter). So the mosquito must have found that center point of the scar to be the best place to bite me (I don’t have feeling in the scar so I wouldn’t have felt a mosquito Land or bite).

My question is: Do in-transit Mets resemble mosquito bites (red, raised)?

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

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Anonymous's picture
Replies 4
Last reply 10/25/2017 - 1:02pm

Hello

i am very afraid. I am 47 and went to the doctor 10days ago with a mole that was growing on my shin

 

The Doctor said yep looks like a melanoma . I have been so stressed and freaked out by this news

I have a husband and 2 kids who need me

My question is after the surgery how long do I have to wait for the stage/results ?

thankyou kindly

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I have had a faint dark line in my left thumb for quite some time. I was never concerned about it until I came across an article about nail changes and health. Now I am terrified that this could be something serious. I lost this nail when I was a kid after smashing my thumb in a car door. It grew back irregular but I have never experienced the discoloration. I noticed it probably a year ago. Could this be a subungual melanoma? Can nail trauma from 35 years ago manifest as a melanoma now? What are my next steps? Should I see my PCP or go straight to a dermatologist. Any encouragement is appreciated.

Can someone please provide insight on this. For background I am a 42yo Hispanic with no family history of melanoma. Looking at the ABC etc criteria I have several factors. Please help. https://www.flickr.com/photos/140190582@N08/37928279161/in/dateposted-public

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michelle wiggins's picture
Replies 13
Last reply 10/25/2017 - 5:08am

I had a stage 2A Malignant Melanoma in my thigh that was operated on almost a year ago. (Feb. 27th 2014). I have been back to the cancer center once for a check up (every 6 months), and my next check up will be next month.  My check up 6 months ago was fine, however, just lately,  the skin on my leg surrounding the scar is VERY numb.  Is this normal almost a year after surgery?  I am getting a little nervous, because it just feels odd!

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