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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In the Profile section, year of diagnosis only went to 2015. It's been updated, so if you left it blank it can now be added. (I had wondered about year when reading a long history and it just said "January" for initial diagnosis. This year? Five years ago? The board communications guru was nice enough to fix it right away.)

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AshleyS's picture
Replies 17
Last reply 2/16/2018 - 3:12am

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/15/2018 - 8:21pm

Hello.. I’m about 14 months out from a WLE of a thin 1A.   My 1A was a moon-shaped ugly duckling mole. 

My scar is messed up due to the stitches seperating from lifting too much and then it got infected so the skin n is pretty wrinkled and marble’y.  

My question - I’m getting something that looks like a pimple at the bottom of the scar (and I don’t often get zits on my bicep).    I see the derm soon and I’m not overly concerned but now I am wondering what would a recurrance look like?  Another mole, a lump or a pimple?   

Any thoughts?

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Replies by: lamomof3, casagrayson, Anonymous, kst, Janner

Hi all!  This isn't exactly the 'club' I wanted to be a part of....but here I am!  Most of the google searches I've done have landed me on this forum and there appears to be lots of education folks here!  I figured I'd join and see if someone can give me my results in something a jr high or highschool student may understand! :)  Here's my background.  41 year old female, I started noticing a light brown spot on my forehead sometime in 2015-16...it was def noticable in photos by December 2016, but was only light brown, not really something that I thought was more than a sun spot or age spot.  By March 2017, it had developed tiny dark specs in it and caught my attention.  I use a lighted magnifing mirror and that def helps see things better!  Fast forward through 2017 and the dark specs became larger and more noticable.  Still was relatively 'small'.  The light brown area was about .7cm but not a perfect circle and the dark brown specs made up less than 1/2 the area.  I made an appt in Jan 2018 with dermatologist.  He 'thought' it was going to be a lentigo or malignant lentigo (which he explained as not being the invasive type of melanoma).  He did a shave biopsy that was .7 x .7 x .1 cm   The results came back as malignant melanoma with .31mm thickness.  Since the thickness is small, he felt I'd be fine to stay local and have it surgical removed.  THe other option was to go to MD Anderson, which is about 3 hours away, but they thought it wouldn't be a priority (due to size) and I may have a longer wait.  I have a consult Wed, Feb 14 with the dr about removal.  I am not extremely worried, since it appears to be caught early!  I am thankful that I went and got it checked when I did! My questions are as follows:  

Any ideas on what size of area would be removed by WLE, for an area described above?  (Doesn't matter but since it is on my face, I guess I'm a bit nervous!)

How do they know the depth is only .31mm?  Does that mean the entire depth of tumor was contained in the biopsy and there isn't anything below that?  (see note below about surgical margin status)

Anything else from the biopsy report stand out? I have no idea what it means.  They did send the sample for additional testing but I don't know what that entails and don't have results from that yet. 

Do all of the 'not identified' items mean there were not present or just couldn't be identified from the sample, or what? 

 

Biopsy Results read as follows:

DX:  Mid forehead shave:  Malignant Melanoma

Surgical Margin Status:  The lesion extends to the deep margin of the biopsy with follicular epithelial involvement.

Measured Thickness:  .31mm

Dermal Mitotic Rate:  No dermal mitoses identified

Ulceration: Not Identified

Growth Phase:  Radial

Level of Invasion: 2

Microsatellitosis:  Not Identified

Perineural Invaison:  Not Identified

Lymph-vascular invasion:  Not Identified

Tumor infiltrating lymphocytes:  Brisk

Tumor regression:  Not Identified

Associated nevus:  Not Identified

Microscopic Examination:  Sections show a thin biopsy of skin.  There is a haphazard asymmetric proliferation of nested and contiguous individual melanocytes present at the dermal-epidermal juction.  Atypical cells extend down adnexal epithelium and there are a few nests within the underlying dermis.  There are dense associated lymphoid infiltrates.  Lesional cells are hightlighed on Melan A stained sections.  An appropriate control was examined.  

Am I in line with what I should be doing....staying local and having WLE, close follow up with derm after and for years to come??  Any other thing I need to consider?

Anyone translate for me??  Thank you so much!

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Anonymous's picture
Replies 1
Last reply 2/14/2018 - 12:23pm
Replies by: Bubbles

http://www.healthmonitor.com/your-health/written-article/when-people-say...

Comment: ”Your cancer was caught early, so you don’t need to worry about it.”
When Dianna Smoljan, 50, was diagnosed with an early melanoma three years ago, she thought, Wow, I’ve gotten really lucky twice. More than two decades earlier, the public relations consultant from Mokena, IL, had been diagnosed with cervical carcinoma in situ, a Stage 0 cancer that was removed in her gynecologist’s office.

Left untreated, melanoma becomes life threatening. In fact, Dianna’s dermatologist told her that her husband had saved her life by spotting the irregularity on her back early. “When all is quiet and you allow yourself to think, the what ifs overtake you,” she says. “Yet you feel bad for wanting someone to understand, because you know it could have been worse. Most people said things like, Oh, you had a mole removed. People tend to dismiss early-stage cancers as, It’s early. It’s out. You’ll be fine.”

Comeback:  ”I was lucky to find it early, but I still need to sort through my feelings.”
“Support is a double-edged sword,” says Dr. Greenstein. “When you have cancer, people will say the wrong things now and then. It’s part of our culture to minimize the bad stuff in life.”

She suggests sending an email to loved ones explaining how you feel and how you would like to be treated. Consider saying, It’s not important what you say. It’s what you say next. “It’s the discussion that makes a difference in how you’re going to feel afterward,” she says.

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Nick C's picture
Replies 6
Last reply 2/13/2018 - 9:35pm

Hey everyone...

Finished my first cycle of trial of a combo of prembro and enoblituzumab and had my scan. Unfortunately, there is still progression. We are continuing the second cycle (reduced to six weeks) and scheduled another scan then. If there is no sign of reduction, I'm out of the trial.

That would leave me with my back-up plan...Yervoy. Either as a mono or as combo trial. Either way, I still have options. Sure one of the these will work.

Other than that, I feel fine...no side effects. If it wasn't for the scans, I won't even know that I have anything wrong with me. (MRI still shows brain activity).

Keep up the the good fight my brothers and sisters!

Nick


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smyers5015's picture
Replies 1
Last reply 2/13/2018 - 5:26pm
Replies by: ed williams

Hi all,

I have a question but let me give a little background first.  I was diagnosed in March of 2017 with an 8.5x4 cm tumor on my left adrenal gland and 3 small nodes from 2mm to 8.5mm on my right lower lung lobe.  I started Ipi/Nivo combo in May and lasted all 4 treatments and am now on Nivo maintenance.  I had a CT in August and the nodules on the lung were stable but the tumor on the adrnal gland had reduced to a little over 4 x 3 cm.  I had another follow up on Feb. 1 and there was still no change in the lung nodules and little movement on the adrenal tumor, now 3.5 x 2.5 cm.  As these were all CT scans we don't fully know whether these are dead remnants or just in remission.  I requested a referral to a radiation specialist to do targeted radiation, hopefull to kill what's left while still doing the Nivo maintenance.  My first meeting is this Thursday but I don't know alot of what to ask, specifically what is the best type of radiation to use, side effects, number of treatments, etc.  I do still have side effects from the Ipi/Nivo treatments of severe fatigue, muscle and joint soreness, rash on arms and calf's which are mostly relieved through prednisone.  I guess really I'm looking for the right questions to ask and what to expect with these treatments?  Thanks in advance!

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bjeans's picture
Replies 19
Last reply 2/13/2018 - 2:34pm

Hello -

I found this community last week after a mole was removed from my husband's chest - melanoma. We received lab results yesterday and have read enough this past week to know they're bad. My husband had a full body PET scan yesterday. Next is meeting with a three-doc team this coming week: Dr. Suraj Venna, director of the Inova Melanoma and Skin Cancer Center, plus a surgeon and a medical oncologist.

The dermatologist said if he had melanoma he'd see Dr. Venna, and that another possibility would be Johns Hopkins, which could be worth while for a second opinion, but we feel lucky (?!?) Dr. Venna's center is nearby. 

Of course we're reeling and I'm practicing how-not-to-cry techniques (for certain meetings since listening while blubbering isn't optimal), though this community does give us some hope, so thank you.

Our question right now is what questions to ask the team aside from the obvious, those on lists, etc. We know we shouldn't necessarily rely entirely on our doctors to find appropriate clinical trials; a few contacts and websites culled from here and another site have been saved. 

So here's part of the ugly report:

Malignant melanoma approaching to within .81 mm on closest lateral resection.

Histolic type: superficial spreading type. 

Ulceration: present.

Breslow thickness: approximately 9.3 mm. You read that right.  

Clark's: Level IV but gather that's not used.

Mitoses: 12 per mm squared.

Precursor Nevis: present

Tumor infiltrating lymphocytes: moderate

Regression: indeterminate

Angiolymphatic invasion, perineural invation and satellite nodules all absent.  

Pathological staging (pTNM): pT4b pNX pMX

Comment is that it appears to be arising in association with a Nevis with congenital features. Two pathologists discussed this and agreed with the interpretation.  

Case clinical information: Collision tumor? Malignant melanoma and squamous cell carcinoma?

Husband is 57 years old and in otherwise good health. 

I'll fill out a profile and he'll join too after our meeting; I tend to be the information junky administrator for us so may post more, but he's a big reader and has dived in too. 

Thank you.

Beth

P.S. Go Nats.

 

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Nett's picture
Replies 10
Last reply 2/12/2018 - 1:43pm

My origonal mm lesion appeared on my back in 05, after which they removed with with clean margins,snb, and removal of my lymph nodes under my left arm as a preventive measure, I believe I was staged as 2b.
After no signs of reoccurrences for 12+ years, it returned aggressively in my liver. I am braf pos. and I was put on taf/mek until the tumours became small enough. Then I had the ippi/opdivo which worked very well but I stopped due to toxicity in my liver,then back to taf/mek and just recently finshed two rounds of keytruda until tumour progression exploded in my liver. I am back on the taf/mek. They say there is nothing else they can give me. Are there long responders to taf/out there? Should I just accept this is my last year?

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Dreaf01's picture
Replies 1
Last reply 2/12/2018 - 9:34am
Replies by: Anonymous

Hi All, 

I am in need of some advice. In Dec. of 2016 I was diagnosed with stage 1b 1.5mm non ulcerated melanoma on my right outer thigh. Slnb was negative and margins were clear after wale. Around Christmas this past year I noticed a hard lump/bump on the right side of the back of my neck when I bend my neck to the left. It’s not painful at all. I moved to a different city after my surgery so I am now being followed by a regular dermatologist every 3 months (he said 6 months would be sufficient, but my anxiety forced every 3 month visits). I haven’t had a cold or cough. Going to see my pcp tomorrow to have her look at it. If she doesn’t think anything of it should I see someone else? I know it’s far fetched to have melanoma skip groin nodes and go to the neck, but I am still nervous. Any advice? Thank you warriors! Prayers for all.

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Hi Everyone

I was diagnosed with acral lentiginous melanoma in December 2017 located under my big toe nail on my right foot. On the 9th of Januray 2018, I underwent surgery where the big toe was amputated halfway in the second phalanx and two sentinel lymph nodes were removed in the groin region. 

Hopefully I will get pathology results soon and understand what the status. In the mean time, I am looking for people who have had a similar experience with losing the big toe.

How have you adapted to walking, are you able to run... I have a lot of questions in this regard and it would be great to share experiences.

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phammond53's picture
Replies 4
Last reply 2/11/2018 - 8:15pm

First diagnosed with Melanoma in 2015.  I had an ulcerated mole on my left outer thigh.   This was removec and a SNB was performed.  No nodal involvement.  In April 2017 a reoccurrence on my left thigh was diagnosed.   Upon further investigation it was determined that one node in my groin was affected.  Surgery removed the nodual on my left thigh and major groin dissection was performed (removed all nodes in my groin and abdomen).  I was placed on Interferon as a treatment protocol.   November 2017 I was diagnosed with Melanoma in my lungs and lymph nodes behind my lungs and another tumour on my left leg. (Stage 4).   I am now being treated with Keytruda and scans every three months.  The volume of cancer is low.

The first Doctor who diagnosed was very grim and stated that the “average” person with my condition goes 8 to 24 months before progressing.   (This was not my regular doctor)   Upon seeing my regular doctor she was far more hopeful and stated that they have many people doing well on Keytruda past the 4 year mark   She indicated that with low volume of cancer in the lungs I should respond well.   

I’m trying to make sense of these conflicting outlooks.   I want to plan and make decisions but find it hard     I’m off work, should I go back?  Try to do some bucket list items while I’m healthy?   How long before my health deteriorates?    Is my Doctor sugar coating my outlook?

Any advice, or even some perspective from this forum would be most welcome    Sorry for the long post  

 

 

 

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WendyI37's picture
Replies 8
Last reply 2/11/2018 - 7:22pm

Hi there, I've been here before when first diagnosed with a Stage 1a melanoma. It was .30mm, no mitosis, no ulceration, not near any vessels or lymphatic areas etc... My actual biopsy itself had complete clear margins, and then my WLE came back clear as well. I go to a derm every 6 months now with no further issues simce diagnosis. My diagnosis was Dec.6th, 2013. Well, at the time of diagnosis I was never considering having another child so I had an IUD put in and thought nothing more of it. Here it is a little over 4 years later and I'm newly married with crazy baby fever right now. I was never told to wait or to not have a child, but here I am petrified to try to have a baby because of all theu controversial stuff about melanoma and pregnancy. I've heard many people say once you have melanoma you always have it. It's just lying dormamt waiting to be triggered. Then I've heard that pregnancy will cause it to recur, or a new one to come up, or it come back with a vengeance and be stage IV. I don't want to not have another baby out of fear, but I also don't want to leave the children I already have behind just because my bilogical clock is ticking again. I've literally cried over this because I feel like my life will forever be on hold because of my diagnosis and I'm not getting any younger. I really need some help here. Has anyone had a pregnancy after melanoma and everything went great with no issues during or after? If so please let me know. I'm sorry for such a long post but no one else understands my feelings. I will add that my derm, my primary care physicians, and another Doctor that deals with melanoma all gave me the go ahead. But after that stupid me Googled and got scared out of my wits. I so much would love to add to my family, but not at the cost of me leaving them behind. Please help someone. :(

Wendy Ingram

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mrsaxde's picture
Replies 6
Last reply 2/11/2018 - 11:43am

I just got home a bit ago from NIH after undergoing surgery yesterdat and apheresis today.

Now it's wait and see if they are able to get my cells to grow. We should know in about three weeks. Dr. Goff explained to me that they have recently changed the protocol so that now they are doing genomic mapping in an effort to get your cells to better identify the tumor cells as foreign and more efficiently attack them. Because of that it now takes 10-12 weeks to prepare the cells.

So it will hopefully be back to NIH sometime in May to complete this process.

-Bill

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rharby's picture
Replies 12
Last reply 2/11/2018 - 3:14am

So, on Feburary 14th I went in to a have a minor Hemorrhoid removed... While the surgeon was doing that she noticed something funny next to it and took everything. The pathology came back a week later on Feburary 20th as confirmed for Anal Melanoma. Needless to say, my Fiance and I went online to research the topic, which didn't turn up anything recent or possitive so we stopped looking online. We met with my PCP, who gave a pretty dim outlook, and we scheduled a PET scan for a few days later. In the meantime we went back and talked to the Surgeon who did the procedure, and her immediate recommendation was that we do a Stigmoid Ostomy to make sure we get everything, this was prior to the PET scan, so we asked, well what if the PET scan comes out clean, she still recommended the Ostomy as the path, followed by Chemo.

The following Monday I had the PET scan, and it came back clean, nothing even in anal canal... Talked to PCP about possibility of mis-diagnosis, and he confirmed with us that the Pathology was confirmed by an 8 patholist commmittee and it wasn't a mistake. Next we went and talked with an Oncologist at Wilmot Cancer Center in Rochester, his recommendation was for us to do whatever the surgeons wanted, then once we decided on what depth of surgery, he would recommend followup chemo.

I'm working on scheduling a meeting with the team at Dana Farber, as they seem to have far more experience with this diagnosis, and another local surgeon next week. Seems to me that an Ostomy is the extreme approach, as there isn't any guarentee that any micro cells haven't already spread to other parts of my body... But if I can find evidence that an Ostomoy improves my long term survival then I'm all for it, but it seems at least none of the Doctors want to push us either way.

Add the dilema, as I'm sure every indivdual has their own social and family issues.. I'm only 40 years old, and I have 3 children who are aged 7, 9 and 11, who lost their Mother 1.5 years ago in a car accident. I can't fatham the thought of telling them anything bad could happen to me, they just aren't ready to hear such information. So my goal is to do whatever necessary to fight through this diagnosis and keep this disease at bay. Looking for any advise on course of actions.. Thanks a ton.

 

Rick

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