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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stotesbery's picture
Replies 5
Last reply 10/14/2016 - 6:16pm
Replies by: stotesbery, Bubbles, debwray


i have had my BRAF status tested twice since January 2016 and it has come back negative both times.  One of my Oncologists recently ordered genomic testing when I progressed from stage lllC to stage IV (had a subcutaneous nodule removed and found to be melanoma).  The testing results (the subcutaneous nodule was the tumor that was tested) came back with  a BRAF V600D mutation but for only 20% of the cells.  Has anyone ever heard of this mutation or had a a similar type of result with only some of the cells being positive?  Any info would be appreciated!  I am currently on Opdivo and have had my third infusion but I swear the tumor (that I still have on my right butt muscle) is growing as it feels inflamed and painful which it did not before.  I just feel like nothing is working but I am so determined to beat this.  I just keep searching for the next thing to try.  I have already progressed while taking ipi at the 3mg dose and if Opdivo does not work either does it make any sense to try the combo?  I guess that is a lot of questions but trying to think of my options.  Thank you!

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Woodrow's picture
Replies 4
Last reply 10/14/2016 - 5:33pm
Replies by: Anonymous, Woodrow, debwray

My husband was diagnosed w stage 1 melanoma this week. His derm called and set him w a surgeon in the same town the dr lives in (90 miles away). We have a cancer center we could go to in St Louis (150 miles away). My question is should we go to a regular surgeon or to Siteman Cancer Center? The melanoma is located on his abdomen and requires general anesthesia and possibly sentinel node biopsy. Am I being too paranoid about this.  

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Alce123's picture
Replies 3
Last reply 10/14/2016 - 4:06pm
Replies by: Alce123, ldub, debwray

I had a stage 1a melanoma removed in 07/2016. I have had follow up appointments with my surgeon (a few too many due to graft failure and what he believes to be some sort of hypersensitivity reaction... but that's another story) and a skin check complete with full body photography. However, no one has checked my lymph nodes.

Checking them myself makes me super anxious plus... someone should be doing this, right?

So, who checks your lymph nodes? Pcp? Dermatologist? I just watched to make sure I'm following up appropriately.

Thank you!


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Samroberts4's picture
Replies 6
Last reply 10/19/2016 - 11:54pm
Replies by: Samroberts4, Surf Rower, casagrayson, youngann, Anonymous

Hello all,

I was diagnosed with melonoma today, which the doctor termed "a particularly nasty one." I am going to the plastic surgeon on Monday (10/17/16) to see if he can remove the melonoma; they are also going to cut into the surrounding areas to see if it has spread.  The melonoma is on the side of my right bicep, and my primary-care physician looked at it several months ago but didn't think it was a grave concern. 

Today, my skin doctor said that she would pray for me, which freaked me out even more than hearing the diagnosis.  I am glad to join this support forum and will give you an update on further develoments, which I will post on Monday.  I am 48 years old and in good health, so I hope this bodes well for me in my fight against this awful form of cancer. 

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snow white's picture
Replies 13
Last reply 10/15/2016 - 11:57am

Well, Dad ended up having to have surgery this morning.  The 3 larger tumors didn't respond to Gamma Knife, they started bleeding and getting bigger.  One of the tumors was the size of a dime, but the Hemorrage (sp?) ended up being the size of a Lime and they believe this was causing all of the mobility issues.  The Doctor said that the surgery went well, they were able to get them all out, although it was a challenge.  He feels that he will regain his mobiity and that we probably should have had them removed from the beginning, but that it was good to give the Gamma Knife a go.  Dad is stable and resting in the ICU.  

Hoping tomorrow is a better day.



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jennunicorn's picture
Replies 24
Last reply 10/24/2016 - 9:01pm

I just got home from meeting with my oncologist to discuss what my options are now that the melanoma is back in my groin... and she still feels very likely that the armpit has some hiding there and the biopsy was probably false negative. We will scan again a little sooner than usual to check on that lymph node, if it shows larger, then we can clinically say it's metastatic and I'll be in the stage 4 boat. For now, I am in the stage 3C unresectable boat.

She laid out all of the treatment options. My BRAF test wasn't back yet, but she still laid out the targeted therapies as well. There are no trials open currently, there were a couple she mentioned that will be opening in one to two months. One trial that is open now is for NRAS positive patients, and she's having that tested too, just so we have all info we need.

My deciding factor was to know that if I went with an FDA approved treatment now, would that hinder me from getting into a trial in the future if I need to. She said that the new trials coming out, and many more in the future, will allow patients who have been previously treated with PD-1 drugs, whereas it has been that a lot of trials want PD-1 naive patients only. But, of course as we know, there are still a good chunk of people that try PD-1 drugs and it fails and they have to look somewhere for something new to try, so it makes sense that they will now be allowing those patients to join trials.

With that info, I decided trying the Ipi/Nivo combo is the best bet, and my oncologist agreed that would be the one she'd choose for me as well. Since I had no major adverse reactions to Ipi, hopefully it stays that way for the 4 infusions that include Ipi. Should be starting in a couple of weeks.

I do have a brain MRI scheduled tomorrow morning, just to make sure things upstairs still look good. If not, there is a trail open for brain met patients... but hopefully I don't need to consider that.

It's coming up on my one year cancerversary and I am so incredibly thankful to everyone on here for their knowledge and support. The veterans, the newbies, the caregivers, you all rock, keep being awesome!



Jenn -  IIIC

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Anonymous's picture
Replies 1
Last reply 10/14/2016 - 5:24am
Replies by: Anonymous

Previous Stage 1 Mel was removed nearly 1 year ago.

I noticed an eclipse-like nevus appear on my forehead around 5-6 months back. I first brought it to my Dr's attention 3 months ago (at my 3 monthly check).. He didn't like it then, though we took the wait and see approach. 

Size is quite small, though edges are very patchy, one very dark spot and a white circle for centre.

Went back this week for my check and the mole is to be removed next week as my Dr doesn't want to risk it.

I can't find many photos online, the only thing it appears to resemble may be an Eclipse Nevus.. Although they seem to be common only in children? Does anyone know if these are common amongst adults too, or if they seldom become malignant etc?

Dr's words were "looks like there may be melanocytic activity" - Perhaps that just means there looks like something is changing in it.

Any info would be appreciated!

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Scooby123's picture
Replies 6
Last reply 10/15/2016 - 2:54am
Replies by: Scooby123, Bubbles, BrianP, JoshF

Hi guys not been on for a while due to my mum passing and having to sort out things.
I went for my 3 month check today and was also expecting consultant to book 3 month scans as they are due. I have had a back issue which is causing me pain in both legs. I do suffer from back issues but this id not settling down. When i went today i explained about my back which they are going to do MRI to check. I was very concerned when they said for me to have brain scan and body scan in anothet 3 months time. That would be 6 months not 3 month scan. I had a tumour in brain had treatment last scan showed shrunk and liver lungs stable. I am worried that leaving me another 3 months is too long to check things still ok.
Do any of you guys have 6 month scans with liver lungs and brain activity.

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Replies by: Surf Rower, Anonymous, desertsun, Janner, CHRISNYC

Hello all, glad to have found this forum. Please forgive me for not yet knowing the right terms... I promise to study, but my second surgery is coming up soon and maybe someone has feedback for me on my questions. Two weeks ago I had very shallow 0.2mm melanoma removed from outside upper arm, in a wide excision, by a plastic surgeon I was referred to by my dermatologist. Good job 30 mins local anesthesia, not much pain, minimal scar visible on upper arm. Unfortunately the pathology on the excision indicated one lateral edge still has melanoma, so now there has to be a second, larger excision. I switched to a renowned cancer center in my region. The surgical oncologist there says the first surgeon didn't orient the sample so they don't know what side the residual cells are on (!!!!). It could even be a separate melanoma, so tiny it wasn't seen. In any case, he says he has to remove the entire scar area from the surgery two weeks ago, so it doesn't really matter and it will be pretty big. "Puckered" "divot" and "shark bite" were the not-reassuring words. Of course I am super happy this is only a Stage 1A; being high risk for this at age 62 with a life of sun, when I heard they had not gotten it all I had been very worried and working on my bucket list (more train travel). Here is my actual question, though any feedback on this situation is welcome.   - Does it sound like they need to use general anesthesia for this? He drew on my arm and the excision will be football shaped and about 2.5" long. He said they would have to pull on the skin a lot so they were going to use a "light" general. I don't mind the anesthesia, but it suggests that the surgery is kind of a big deal. The first one was so easy and the stitches were internal; these will be external. Thoughts? Have any of you chosen a plastic surgeon over a surgical oncologist for this size excision? I like both of the doctors. It seems better to be treated at a cancer center, regardless of the cosmetics afterwards, right?  Maybe they make it sound worse than it usually is so we are happy with the scar later. At least it is in a good spot for a tattoo.

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Jango's picture
Replies 7
Last reply 10/15/2016 - 11:46am

Hi everyone, I posted a few days ago because a mass was found in my dads abdomen and he was awaiting a ct scan to tell us more. Yesterday they told us that he has a mass in his abdomen as well as othe spots of cancer in abdomen and a few on his lungs. It has not been biopsied, but is probably melanoma as he had stage 1 mole removed from the same area a few years ago. M biggest fear and concern right now is that he is hospitalized due to overwhelming weakness and loss of appetite. He is fading before my eyes and we are still waiting to be seen by an oncologist. We also live in Ottawa as I noticed a few of you do too. Any advice would be most welcome. This came on so quick. A few weeks ago my dad was strong and robust with an appetite. Please let me know if you have suggestions !

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Monroemichelle926's picture
Replies 13
Last reply 10/19/2016 - 11:05am
Replies by: AshleyS, Anonymous, Monroemichelle926, Joycem, Bubbles, Hukill

Hi everyone!

I guess I'm just here to connect and express my fears, and maybe learn some information I didn't know before.  I am a 33 year old female, and currently 24 weeks  pregnant with my second child.  I went in for a routine mole check a few weeks ago (it's been years since my last) and the doc recommended I get a Melafind scan due to some funny looking ones on my back she thought needed checking.
 I was scanned for 10, and out of those 10, one was dysplastic with a score of 2.1, and the other had a score of 3.4.  The doctor said the both need to come off, and that the one with the high score needs to be checked for malignancy.  He said it so casually that I didn't even think to ask any further questions before I left.  Is he saying I could have cancer?  Like, right now?  I guess it's not sinking in or something.  I feel fine.  My pregnancy is going great; no issues.  Good appetite and weight gain.  Baby is strong and growing perfectly.  It's a small, flat mole; no ulcerations or irritation.  Can I feel at ALL assured that if it IS malignant, it would be just a 0 or 1 stage?  I just feel like I'd feel sicker if it were more advanced then that. 
I know no one here is a doctor.  I hate when people ask for medical advice online, and here I am doing just that. Any thoughts would be welcomed...thank you in advance!

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Hello everyone!

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mass spectrometry based lipidomics  are hydrophobic or amphipathic small molecules which include fats, waxes, sterols, fat-soluble vitamins (such as vitamins A, D, E and K), monoglycerides, diglycerides and phospholipids. The crucial role of lipids in biological physiology is evident not only in energy storage and structural components of cellular membranes, but also in signal transduction, membrane trafficking and morphogenesis.

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Sandra_story's picture
Replies 12
Last reply 10/16/2016 - 10:12am

Hello and thank you to this forum for the all the information that I have took in.

This is our story and I apologize for any spelling mistakes and or lack of proper writing technics.

About 8 months ago my mom had got what we all thought was a really bad cold/flu. No one was sure including her doctor. At this time she had what would be considered normal flu/cold symptoms. This issue was that this never seamed to go away. Mostly her upper tract symptoms like abnormal amount of mucous and or saliva that was present. During this time until about a month ago she a seen her gp over 14 times always going through the same thing as the gp insisting that she had some sort of cold or sinus infection and mostly dismissing any concerns my mom had. My mom had to be overly proactive with her gp in stressing that she felt something more was going on. Too make this part of the story a bit shorter, about a month a half ago she noticed her lymph node on the left side of her neck was swollen. A clinc doctor was concerned and ordered a ultrasound. After that a cat scan was preformed and results came back as highly likely that there was some sort of cancer. A biopsy was preformed around a month and a half ago. We waited a week for the results. During this time of wating my beloved grandfather and my moms dad had passed away at the age of 97. A few days after his memorial we a learned the results from the biopsy. Well it came back back as Melanoma in her lymph node on her neck. As we all know and can appreciate that this news came as shock and  to say very hard to deal with. At this point In time my mom had been losing significant amount of body wieght, about 20 lb over the course of the month and had been noticing her desire to eat decress. She had was having a harder time swallowing food and a that with the lack of desire to eat. After the biopsy results we had more wating to meet with the oncologist in our area (Ottawa, Canada) We were lucky to get a Melanoma specialist. Here is a bit of the report after the first meeting. Again I'm sorry if this post is too long.

the following is from the oncologist report:

Thank you kindly for referring this very nice 63-year-old lady regarding her metastatic melanoma. She is well know to yourself and came along with a very caring and supportive family.


She has been generally healthy all her life. She is fair active, but had no other risk factors for melanoma in terms of exposure or family history. She first developed a lesion over her upper back in 2003; that was excised and she underwent negative sentinel node sampling with no adjuvant treatment felt required.

she has been under regular dermatological surveillance all along. There has been no suspicious or recurrent lesions.

However, she noted a lump in her left side neck at the jugulodigastric area a couple of months ago. It has been increasing rapidly in size, even since her recent CT scan. She had a consult booked with ENT service shortly. 

However, her health has been health has been decling with about 27lb of wieght loss in the last couple months. This seams to be due to increasing digestive complaints, having marked dysphasia for solids and thicker fluids. 

(I will now just summarize in my own words as to keep this short , although I know this is too long of a post)

They are clearly concerned for my mom health. The oncologist sent out to review for BRAF MUTATIONS as of today no results are in.

we had a gi tract endoscopy which revealed no tumors in the tract but a a closing of her tract and upper air way due to a lesion or tumor behind her tract.

She is on Iv hydration and also had a feeding peg put in. Wieght seamed to stabilized after this. 

Ct and bone scan have been done along with MRI.

we met with our oncogist today for the second time today. The tumor on her neck has been growing and she has been having more difficulty with shortness of breath and saliva build up due to her blockage of her gi tract.

we were giving these options today and this is were I need the advice form the fourm.

option 1: Pembrolizumab alone ( can start in 4 days )

option 2: If BRAF mutation: dabrafenib + Trametinb (pills) We still don't know the results of the BRAF TEST

Study: Pembrolizumab + Tvec viruses injections [ this a randomized trail being conducted and would take at least two weeks to start with no gaurentee of getting the Tvec or placebo)

option 3: Nivolumab + ipilmumab. [ more toxic and need to be in good health ]  Doctor was on the fence for this option considering my moms current state.


So my question to all the wonderful people on this fourm. Are we headed down the right path. Are there things that we haven't considered that can be important. Treatments that aren't available in Canada but else were that can help? 

I want the best for my mom and love her more then anything. I wish I could portray this better in writing. i have also reached out the an alternative cancer clinic in Ottawa that works with naturopathic doctors and traditional we will see them on Wednesday.

Any advice will be so much appreciated and also I would like to put out there too all the forums family's and friends that have affected by this my best wishes and positive thoughts.  I hopefully Want to be in a position to offer advice instead of just taking.

thank you so much for taking the time to go through this post. You are all so much appreciated in taking time to help other and for that I will be ever grateful.



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Aida Ballesteros's picture
Replies 2
Last reply 10/13/2016 - 12:37am
Replies by: jennunicorn

My dad was diagnosed with melanoma in situ last august. Today he told me he had something bothering him in his hade, just up his ear. since its sorrounded with hair he told he he hadnt noticed it until it started hurting. I just saw it today and i really dont know if its a pimpple or a mole. It feels bumped and it has like two little holes just where the hair grows, how can i know the difference???
Maybe im overeacting but who can blame us after this diagnosis??
Thank u!

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