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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Nett's picture
Replies 0

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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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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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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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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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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cancersnewnormal's picture
Replies 1
Last reply 2/9/2018 - 1:25pm
Replies by: ed williams

For any of you science geeks out there.... some fine reading material.  :)  https://www.nature.com/collections/btwlvcpdls

http://cancersnewnormal.com

-- Niki

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Hello again. I had a spot show up on my CT scan, at the same location where I had what felt like a subcutaneous bump. It was near to my original primary. It wasn't discolored and felt more like a deep pimple. I had it biopsied and the result was benign, folliculitis.

Has anyone had an inflamed hair follicle or pimple show up on a CT Scan before?

My doctor wants to examine it again at my next follow-up to see if I need another biopsy.

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laulamb's picture
Replies 1
Last reply 2/8/2018 - 11:25am
Replies by: SABKLYN

Looking for advice:  Long story short:  Diagnosed Stage IIIa in 2016, did 4 treatments of Yervoy 3mm every three weeks, then did maintenace dosage every 3 months for a year.  I was traveling 4 hours to Dr. Lynn Schuchter at Penn Medicine in Philadelpia for the Yervoy treatments.  After my last maintenace dosage she said I could see my regular oncologist for scans every 6 months for 5 years ... and if something shows up on the scans to come back to Penn Medicine.  

Saw my local oncologist to get setup with scans.  Since I am 44 years old he is recommending just doing CT scan on chest and MRI on pelvis.  He said the full CT/PET scan on chest and pelvis would be putting too much radiation into my body.  He did say if anything would show up on the MRI of the pelvis he would then do the CT/PET scan on the pelvis to look at it closer.

Any opinions on this plan for scans?

As always, thanks in advance for any advice.  Everyone is so kind and helpful on this board.  

Laura 

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Threefitty's picture
Replies 2
Last reply 2/8/2018 - 5:59pm
Replies by: Bubbles, guynamedbilly

I'm 7 months into a  blind CT and believed to be in an Opdivo only arm. (Stage 3B, adjuvent tx)

From about month 2, I have had a "productive cough" (clear phlegm).

Never gets too annoying. But when I lay down at night I "wheeze and gurgle" lightly and have this weird little noticable extra aspiration noise at the end of exhaling that is like nothing I ever experienced. Maybe that's how we breathe, I just never heard it before.

MD is not overly concerned and it has now been pretty constant for 5 months. Nothing discomforting or alarming as to pneumonitis, but something.

I thought I read someone mention "wheezing" and nivo. So I am wondering if others are experiencing or have experienced this "light side effect", and whether it remained stable or dissipated after treatment stopped.

The balance of my own Opdivo report, FWIW2U, is no meaningful side effects aside from thyroid medication now being necessary.

Happy Travels,

 

Dave S.

 

 

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Scooby123's picture
Replies 4
Last reply 2/8/2018 - 5:22pm
Replies by: Scooby123, BillB, Mark_DC

Hi all hope you all well as can be. For anyone who has had keydruda or on it at present. The only side effect I have been getting is loose Bowles movements about twice a week normal after had treatment , aching joints.

With the bowle movements does it get better with more treatments or gets worse or the same. I have done 9 treatments scan last week awaiting results but not had much bowle issue this time after treatment. I watch my food intake due to certain food irritates my Bowles but also I like spices food and I am coing well. Just woundering how others are coping with it.

Scooby❤️

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hsmom23's picture
Replies 4
Last reply 2/7/2018 - 9:56pm
Replies by: hsmom23, SABKLYN, Anonymous

My father in law has just been diagnosed and we are looking for the best melanoma specialist in the Atlanta area. Any suggestions would be greatly appreciated!

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Annikins's picture
Replies 2
Last reply 2/5/2018 - 11:57pm
Replies by: sister of patient, Anonymous

Hi

So my brother (46) was diagnosed with incurable melanoma in October 2017.  Information has been pretty hard to come by from the consultants, and I'm not sure if he's sharing all the info he gets anyway, partly because he's an adult and might not want to, and partly he has mets in his brain so I'm not sure how much he remembers.

He is on trametinib and dabrafenib, and has been seeming like he's doing ok, relatively.  He was more or less bed bound for a while, but has gradually got more energy.  He can't walk far but has a wheelchair and is making it up and down the stairs.  He has been able to spend some time with his two young children, which has been good.

But this week he has become very confused.  Is this a side effect of the medication?  Or maybe a sign that the mets in the brain are growing?  He had some scans last week, but he won't get any results until next week, so I'm just looking to maybe find out what this might mean.  I know no one wants to look negatively, but I just want to be a bit prepared.

Does anyone have any idea what might be happening?

Thanks


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dmarie's picture
Replies 10
Last reply 2/5/2018 - 8:24pm

This forum has been a phenomenal source of information and I so appreciate your knowledge and experience. I am trying to help my husband make some really important treatment decisions, so I am hoping that some of you who have experience with brain mets who have had either WBR and/or SRS will give me some insight. 

My husband (49 years old) feels better than he has in years. He is eating well - fish, eggs, veggies, no processed food or sugars. He's been going to the gym. He is disappointed that he hasn't lost any weight, but he feels and looks really good. And, I suppose, therein lies the conundrum. His disease appears to be progressing. Taf/Mek seems to have stopped working. The radiation oncologist saw him a few days ago and said, "you look so much better than your scans would indicate." (Thanks??) He is completely asymptomatic, and returned to work full time a week or so after surgery in August. He is an IT Systems Analyst, so focus and analytical thought is really important to him, and working is also very important to him, and he is good at what he does.

Anyway, as you can see by the following chronology, this is all relative new, and he's only been on one treatment plan so far. And Taflinar / Mekinist seem to have been working for 4 months or so. Until they seem to have stopped working.

August 23, 2017 - craniotomy to remove tumor (largest, causing aphresia; 12 smaller lesions remaining in brain)

August 25 - diagnosis, metastic melanoma

September 23 - start Taflinar & Mekinist

November 14 - Follow up CT scans and brain MRI showed tumor reduction in many sites, and some reduction of brain mets, but possibly 6 new lesions in the brain. And 1st we've heard of tumors in bone (femur and illium).

November 15 - met w/ radiation oncologist to discuss GK surgery. He reviewed scans, and thinks "new" lesions "could be" bleeds, rather than new tumors. Brian opted to be re-scaned in 6 weeks and see where we are.

December 20 - results of scan are inconclusive. Some mets have reduced; but several new lesions, scatted all over the brain. Recommended WBR, rather than GK. Brian opted to 'watch and wait' and re-scan in 6 weeks. 

January 31 - now radiation oncologist is "concerned" as several tumors have grown in size. We were not told the number. (I am guessing that there are +-20 currently, but only a guess). He is recommending WBR, (non-hippocampus sparing), as soon as possible. Medical oncologist wants other CTs done as soon as possible to monitor progression of other sites (lungs, liver, lymphnodes, bones, pericardium, etc.) The idea being that if Brian is having radiation tx for the brain, he can have other sites 'zapped' at the same time - not sure how this works. 

We are really concerned with cognitive impairment caused by necrosis with WBR, and, from what I've read, would prefer SRS in concert with immunotherapy. I don't know what the oncologists' recommendation is for drug therapy at this time. It was not discussed at the 1/31 visit. I have read many journal articles, blog sites, Cancer Commons, this forum's offerings, and Celeste's blog, (amazing work! THANK YOU!!!!) It is all so informative, but really overwhelming. 

Is our concern (fear) of cognitive impairment valid? Is SRS better tolerated? Are the effects of one less harmful than the other? What questions should I be asking the docs? Is it possible to push for SRS over WBR when radiation oncologist wants to do WBR? 

Compounding this situation is that he was laid off from his job effective February 1, and has interviews lined up in the coming weeks. He wants to put off radiation until he finds a job. The recommendation from the doctor is to get radiation done before the job search. I heard the urgency in the doctor's message. I don't think Brian did, however. He is of the mindset that rushing into things is not necessarily the right course, and that we should have time to digest all of this and make well educated decisions. He is also of the mindset that diet is the key, and "cancer can't live in an alkaline environment" and "sugar feeds cancer". (While I am sure that a good, healthy diet is ideal, eating salad is not going to cure him). I am assuming that these little buggers (tumors) are not on his timetable and are growing as fast as they can, with the intention to kill him. (I do think that my husband is in some denial about all of this - given that he does feel good, etc., and who wouldn't be?? Who wants to deal with any of this??)

Thank you so much for reading. I look forward to any and all responses. Diane

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Sjack's picture
Replies 2
Last reply 2/4/2018 - 2:26pm
Replies by: cavsnut, CindyJ

Hello, 

I had a malanoma (mole) in my calf, tumor site operated on January 8th, and they did do a sentinal lymph node biopsy (groin) which turned out positive for cancer cells, and so we go from there. I am told the margin was clear.  Then LDH blood test, and the results are "normal".  Also, the mitotic rate was "normal". 

PET scan on Monday Jan. 29th, results on Thursday Feb. 1st. 

PET scan looked good - that is, no problems, nothing lit up. One or two tiny little spots on the lungs, but nothing he was concerned about - no biopsy or anything recommended for the time being. Lymph node was “micrometastatic", and size/depth do not make him want to go in for a CLND (complete lymph node dissection (removal) at groin). Five years ago they would have done it as a matter of routine, but as I wrote about before, they do not see any real improvement in outcome so nothing for now. I’m really happy about that, because a lot of what I’ve read indicates that Lymph node nonsense is almost worse than cancer itself. Well, sort of. So, I’m staged at 3A. So the choice of action is CLND vs Surveillance. We’re feeling certain that surveillance is the right path. This means 1) skin checks with dermatologist every three months, 2) Ultrasound of left groin every 3 months for 1 year to check for node changes, then every 4 months for year 2, then every 6 months for year 3, and 3) CT Scan every 6 months going forward. Of course IF anything pops up along the way, the scheme will change accordingly. He said he thought for someone in my situation there’s a 70% chance that nothing else will come up. Well, and I crazy or is this GREAT news? Yes, every test will have me sweating bullets a bit I suppose, but I'll take this as a good day.  So, for today at least, there's only one thing we say to death, "NOT TODAY!!!!"

Am I just being overly optomistic? Or did everybody start off this way?

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Maureen038's picture
Replies 8
Last reply 2/8/2018 - 4:28pm

My husband, Bill just had scans and thankfully there was nothing new!! We had such a scare last spring when there was something new in his liver but it wasn’t cancer. Bill is taking a month off his breast cancer drug ( he has the her-2 mutation) because his liver enzymes are very high. He’s been stage 4 for five and a half years. 

I read this board often to get the latest and greatest from Celeste, Ed and Brian P. I hope all is well with you Brian.

My prayers are with all warriors and their families!!❤️

Maureen

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