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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dmarie's picture
Replies 12
Last reply 2/25/2018 - 6:51pm

I posted last week, asking for advice and/or information about brain radiation for my husband, as the Taf/Mek seems to have stopped working (3-5 months in - not sure when it stopped). It was decided that WBR was his only choice, as there was evidence of possible LMD forming (a dark spot of cells clustering near the surface, which weren't yet a "lesion" but it looked to the Rad. Onc. that it is suspicious enough that only WBR would eliminate it. And, of courese, that there are many mets scattered throughout the brain. So there is that.

Thursday he went for body CTs, to see where he is with other tumors - liver, lungs, lymph, and femur. Yesterday afternoon his medical oncologist (mel specialist) called. There is progression in several areas, among them the upper thigh bone and several new ones in his ribs. This would explain the pain he has been having in his sides and back. 

We will meet with med onc in 10 days to discuss next treatment plan - systemic treatment with immunotherapy was touched on, but not sure what specifically would be used. Does anyone have any insight? 

The dr. was going to discuss the results with the rad. onc. to start the conversation about radiation for the bone mets, since Brian will be at the hospital for radiation daily for 2 weeks, starting Monday. Can anyone give me any insight on having radiation on multiple sites simultaneously?

And one last question - at our last visit the mel specialist mentioned Zometa (Reclast) for bone mets, but he didn't mention it yesterday in our phone call. Is this something that should start ASAP? Or should I wait until the appointment in 10 days? (I feel that things are ramping up and I want to advocate for him to get whatever he can to stop / slow this down, but I am not sure how hard to push). 

Thank you. I greatly appreciate your help and guidance. Diane

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warreri's picture
Replies 2
Last reply 2/25/2018 - 6:45pm
Replies by: Bubbles

The tumors in my leg only seem to be branching off instead of shrinking. I started Yervoy in August and then when my tumors grew they decided to put me on Opdivo as well. Given all that, the pet scan from a few weeks ago shows that all my tumors just grew with more spots since my pet scan in December. I'm just wanting to know the point in immunotherapy treatment where we should be calling it quits because while my dr does think it might be slowing the grow down I seriously doubt it's going to cure me at this rate. So there is is about seven months since my first yervoy injection (obviously I ended that because they don't keep you on it for that long) and six months since my first opdivo infusion (still ongoing) and nothing but tumor growth. 

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Replies by: AussieGuy, Bubbles

Hi All.

I'm looking for some information for a relative that has been diagnosed with the above.  A brief history is as follows:


1. 34 year old female, 3 Years ago diagnosed with Melanoma Stage 1, and had this removed. No further complications or checks done.

2. January 2018 - Had trouble breathing, sent for a scan and diagnosed with Melanoma Stage 4 on her lung.

3. Doctors told her she could start a free trial of Nivolumab if she waited till March.

4. She had back pain for a while, but it was manageable and thought to just be Sciatica.  2 days ago pain became unbearable.  MRI returned that she has Leptomeningeal Thickening of the spine.

5. She has been put on dabrafenib and trametinib, but told she cant now go on the free trial of Nivolumab.  She is prepared to pay for it but her doctors are saying that the Leptomeningeal Thickening must shrink before she can have Nivolumab.  So they hope the dabrafenib and trametinib will accomplish this in 4 weeks.

6. Once shrunk, she will stop taking Trametinib, but stay on the Dabrafenib along with Nivolumab + Ipilimumab

Does this sound correct?  Should she start Nivolumab immediately or wait like her doctors have suggested?

Any other treatments, experimental or otherwise anyone would recommend?

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Gibsongirl's picture
Replies 4
Last reply 2/25/2018 - 5:04pm
Replies by: Gibsongirl, Prd10, Janner

I couldn’t figure out how to update my profile, I ended up dx with stage unknown/likely stage 2 (first Dr did shave biopsy and WLE that did not get all the cells with no SN biopsy) and had 2 WLE with the last one removing and 8X5 inch section of my thigh. I was cleared after the last surgery in June 2017 when the pathology came back.


Just like last time, bam. No changing mole, just a sudden black shiny dot that feels stiff to the touch appeared, this time on the pad on my left pinky finger. I uploaded the picture. It is the exact size, look and feel as the one on my thigh that resulted in 2 WLE, first being 2X4 inch removal unsuccessful, changes drs and the second was an 8X5 inch WLE that was successful.

Im in a panic. I thought this was all over in June. Like my thigh I have zero doubt it is melanoma. Same reaction, that wasn’t there before. Tried to scrape it off thinking it was something stuck and then harsh realization.


The extremely ironic thing is I found the initial one days before President’s Day 2017. Had my first surgery the Tuesday after. What does such an aggressive and soon reoccurrence mean? I have been extensively tired and bruising very easy lately. 


Anyone ever have it on their finger? I can’t comprehend since they took most of my left thigh the last surgery. What happens on a finger? I’m sick. I’m 40 with a 7yo special needs daughter. 

Stage 2 WLE 6/17

Current reoccurrance on fingertip.

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Meg1414's picture
Replies 9
Last reply 2/25/2018 - 1:34pm

Hi! I just discovered this site today and am excited to find a place where so many people have had similar experiences. But I was hoping that someone could help me out with this - 8 years ago I was on interferon. I did the whole 20 doses and then 11 months on my own routine. But now, I'm thinking about trying to have a baby and can't find any statistics or anything. I don't have an oncologist anymore. (He retired a couple years ago and I just see a dermatologist now.) Has anyone on here gotten pregnant after interferon, or know any information? I don't want to go to a fertility specialist until I've tried for a while, but was hoping someone out there had some good (or bad, I guess) news. :) Wishing you all the best!

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TexMelanomex's picture
Replies 8
Last reply 2/25/2018 - 11:03am
Replies by: CancerSpouse, Coragirl, TexMelanomex, Bubbles, Anonymous, BillB

Hey Warriors! 

I just returned from Houston and round 7 of Pembro. Its looking like a surgery will happen early next month to clean out all the wreckage left behind by the PV-10 injections near my left clavicle. Apparently since the doses/volumes were so high with the PV-10 my body is having a hard time clearing out all of the remaining tumor (and it was big to start with). I was told today that I am classifed as a "complete responder" to the PV-10 so that's pretty cool.

I never thought I'd say this, but Im looking forward to the surgery! After months of bandages and PV-10 purple leakage from the injection site....I will once again be able to wear a white shirt! Plus, to me, this is the finishing blow to a tumor that signals a victory on the battlefield. Now, getting these last two tumors wiped out will be cause for a real victory celebration...I'm working on it.

Taking the Pembro alone is proving to be much easier than the combination therapy and side effects are almost nil on the last two rounds.

I hope you are all fighting hard and perhaps more important than fighting hard all the time, staying in the fight! 


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ktode10910's picture
Replies 10
Last reply 2/25/2018 - 2:32am

Hello all,

Here is my story in a nutshell.  I am a 35 yo female, first diagnosed with Stage III B melanoma in 2008.  The original site had metastisized to my sentinel lymph node and I had further lymp node removals that were clear. Then they recommended and I did a year of Interferon A--one month via port daily and then three times a week self administered.  Additionally, I had two other new diagnosises of melanoma Stage I that were removed and clear in 2009 and 2011.  

Fast forward to a few weeks ago--I had been having lower back lumbar pain for a while and finally went to see a spine Dr. and he ordered an MRI.  The MRI came back showing numerous, diffuse enlarged lymph nodes in my retroperitineal, pelvis, and lumbar area.  Given my history, my doctor sent me for a PET scan immediately which came back with diffuse long distant involved lymph nodes--from my left leg, through my back near my spine, up into my chest, under my clavicle and into my left armpit.  Biopsies were done and are positive for metastatic melanoma, considered a recurrence of my original Stage III diagnosis ten years ago.  Due to the large lymph involvment, placement, and amount I have been told surgery is not an option.  So far, my major organs are CLEAR (lungs, brain, liver all look fine) and my spine and bones are also ok.  I do have one possible tumor that may have to be removed depending on what a surgeon says, that is near my upper back.  It is unknown how/if that is involved in the lymph node recurrence. 

So based on this, my oncologist is starting me on Keytruda given via port every three weeks.  I am still waiting for my insurance to approve my first treatment, but hopefully it will be in the next week or so.  

So, tell me everything about Keytruda.  My oncologist promies me it will NOT be as bad as the Interferon A--that about killed me. I had every side effect possible when I was on that, including three hospitalizations for complicatoins.  He says people overall do very well and to look for "itis" symptoms (pneumonitis, pancreititis, gastritis, dermatitis, etc). 

So give me the good, bad and ugly about Keytruda.  I know everyone reacts differently, but I had no idea what to expect last time and I really would love to know more this time.  I have a two year old son and husband, which is different from ten years ago and I am hoping I can still function to work and be a mom. 

Thanks :-) 

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jrtufo's picture
Replies 3
Last reply 2/24/2018 - 2:12pm
Replies by: jrtufo, Bubbles, lindanat

Stopping Keytruda-symptoms mimicing Sogren's syndrome.  Rocks growing in salivary glands and severe dry eye.  Treating with steriods.  Anyone else have this issue?  How long before steroids eliminated symptoms?  Did you go back on Keytruda?


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Anonymous's picture
Replies 4
Last reply 2/24/2018 - 1:30pm
Replies by: Anonymous, Mohnish

Hello all, i was diagnosed in stage 4 in may 2017, on keytruda had 10 infusion, which i have too arrange fund on my own as i am Indian there is no clinical trial available in india. Please suggest any alternate or clinical trials for indian resident any information will be supportive.

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Abul3059's picture
Replies 4
Last reply 2/24/2018 - 1:45am
Replies by: Abul3059, Janner

I had an excision of melanoma in situ from my right, mid back, last June 2017. Now there is a purole spot appearing almost exactly where my melanoma was, right in the incision line. I have already contact my dermatologist regarding this. I am wondering if the excision was adequate and will include the report here :

Biopsy proven melanoma in situ 4-0 Vicryl PS2, Prolene PS2
The specimen is received in a formalin filled container labeled "rt mid back"
and consists of an unoriented, 2.7 x 1.3 x 1.2 cm, tan-white hair-bearing skin
ellipse. The cutaneous surface displays an eccentric 0.5 x 0.5 cm previous
biopsy site that is 0.3 cm from the closest peripheral margin. The deep
surface is inked black and the specimen is sectioned from tip to tip into nine
pieces to reveal no obvious mass. (ESB/4B)
1A first one-third of the specimen, three pieces
1B-C mid one-third of the specimen containing the previous biopsy site
1B two full cross sections
1C one full cross section
1D remaining one-third of the specimen, three pieces
No time was given that the specimen was taken from the body or placed in
fixative. The total elapsed time the specimen was in fixative cannot be

I am concerned about the '0.3 cm' from peripheral margin. In her notes from the procedure, she stated that 9mm margins were measured- how could this be? I had a previous shave biopsy before this excision. Thank you!


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aldrichdesigner's picture
Replies 14
Last reply 2/23/2018 - 11:11pm

Hi Everyone,

My name is Jeremy and I'm new here. My dad has been telling me about the positive results he's read about on this site and suggested that I come on here and explain my story and see if I can find some much needed support. I'm going to tell my whole story for those interested, but you can skip ahead to the emoji for what's happening today.

In 2008, I developed a mole on the back of my lower left calf that my wife grew suspicious of so I eventually got it looked at and the doctors took immediate action and wanted to excise immediately. So, they took a small piece to test. It was positive for melanoma so they went back in for a full excision and sentinel node.

The sentinel node was positive for micro cells so they wanted a lyphnode dysection in the thigh. They went back in to my thigh and took all the nodes out of my thigh. The remaining nodes were all negative for melanoma so my doctor decided that "chemo" was not necessary. I followed up with regular skin and blood scans every six months till I hit the 5 year mark and then went to yearly after that.

In late February of last year, I began to have back pain between my shoulder blades. It lasted so long with the pain continuing to get worse rather than better so I decided to go to a chiropractor. He seemed confident that he could help because he claimed that I was a little out of alignment but everything else in his x-ray looked perfectly fine. After 3 weeks of treatment, with the cost adding up, I decided to go see a doctor about the pain.

After carefully moving my arm around and some other smaller tests he decided I needed PT that it was likely injury based. Well that didn't work and after 3 weeks of that and I am now experiencing enormous pain in between my shoulder blades but now also in my mid and lower back. A return visit to the doctor would call for a CT scan for he was nervous it was a heart condition. (This was due to testing very high in blood pressure as well, I was 308lbs at the time.)

After a few weeks of waiting my results had arrived and I had to go in to see him. At this moment I am very nervous because a small part of me knows it could be the c word but it's been 8 years and almost everything in my life was looking good for the most part. So I walk into the doctors office and sit down and say "give me the good news doc" which he responds with "well I wish that I could but... Well... I'm just going to cut straight to the point. You are probably going to want to sit down for this". A lump of nervousness explodes in my stomach and my entire body starts shaking as I sit down. "You have metastases throughout your spine and liver. It's pretty significant and we need to biopsy the area to be sure but I think you need to be prepared that what you had in 2008 has returned".

So ... That's what we did. A bone biopsy of the spine which if you've never had done is quite the experience. I was laid on a table, given a local and a sedative and with a large needle they Pierce the spine and then you hear a few clicks like they are trimming your toenails and then they are done. Well, sure as shit, Melanoma IV it is, what a frikkin' day.

In an effort of painting a better picture for you all, it's worth noting that my second daughter was born in April and I got a confirmed diagnosis in June. We also have an eleven year old daughter so we had taken a long break in the child creation department but while the tools were still working we decided on one more.

Anyway, after this dreadfull diagnosis my wife and I lost all composure and shared a long cry. But, things weren't over just yet. I scheduled an appointment to meet an oncologist but she couldn't see me for a few weeks but she was rated one of the best in town so I decided to wait. This long wait would prove to be problematic but time will tell if this was the right decision but she's been excellent so far.

My pain would grow to unbearable proportions until my appointment finally came. As she reviewed my scans she instantly decided we needed a neurosurgeon involved and that surgery might be necessary as the t2 vertebrae had significant decay and needed immediate attention. Well it would appear we were too late as that very same night my back would fracture in 3 places and I would be rushed to ER in an ambulance. Emergency surgery would be needed to repair my spine and fingers were crossed that I would ever be able to walk again.

After being in the hospital for 10 days, I was cleared to leave and cleared to begin PT and Radiation on my spine for pain and metastases. I would receive 10 treatments before finally leaving rehab and walking with a walker out of the facility. I would eventually graduate to a cane and then to nothing at all although my spine is permanently hunched a bit now so it looks like I have little to no neck now and by the end of the day my head is usually drooping down.

Upon completion of rehab in July I would begin on a regimen of keytruda every 3 weeks. After 4 infusions, we took additional scans to find that everything had shrunk and a few of which were as much as half the size as before. Although, due to excessive side-effects we decided to skip a treatment to stabilize my body again. Once that was done my oncologist decided to start me on zometa every 6 weeks and keytruda back on for every 3.

Well, let me tell you. I am not a fan of the zometa as that causes me to have pain EVERYWHERE in body. Joints, muscles, bones with it amplified anywhere that moves. But I would endure do to the positive results we we're having.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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Anonymous's picture
Replies 3
Last reply 2/23/2018 - 2:29pm
Replies by: Anonymous, Janner, ed williams



I received a pathology report below and not sure what it means.  I have been scheduled to have a wider section removed based on this report.  I need help understanding the report.


DIAGNOSIS: A. Right pretibia, Shave Biopsy:"" SEVERELY
MARGIN."" "" Comment:
Although the
findings are not
sufficient to
render a
diagnosis of
melanoma in
situ, the lesion is
atypical. Initial
and multiple
deeper sections
were examined. A
(with appropriate
distribution and
supports the
above diagnosis. Sections show a
proliferation of
melanocytes at
junction, with
areas of

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Anonymous's picture
Replies 2
Last reply 2/22/2018 - 8:48pm
Replies by: Anonymous, Jamie1960

Hey guys, I’m 29 and live in qld Australia, both my parents are born in the uk but I was born in Sydney . ever since I was a youn I always remember having a lot of moles particularly on my stomach, back, and neck. it’s been something that has always made me depressed and embarassed, I have over 100 moles/brown spots on my back and constantly finding new ones, I find the more I stress about them the more they come out and I find new ones. I never take my shirt off let alone let people see me without one, I have severe depression because of this, I no it sounds silly but it really brings me down, I feel so ugly because of it, im just wondering if anyone else has this and if so can we chat? 

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bjeans's picture
Replies 2
Last reply 2/22/2018 - 4:53pm
Replies by: bjeans, ed williams

My husband is scheduled for an SLNB and wide local excision 3/2/18. A 9.3 mm mole had been removed from his chest. We were referred to a melanoma/skin cancer center. They immediately ordered a full body PET-CT (clear!), and we met with the doctors on his team: oncologist, surgeon and dermatologist/director (Venna). Apparently the oncologist keeps up with the literature/conferences/peer consulting/etc., and may tend to be more on the aggressive end of the spectrum when it comes to treatment. So far so good. 

I've noticed some people here who have had PET-CTs also had brain MRIs. Is that the norm and would you have thought my husband would have had one? In case it matters, no symptoms.

Thank you! You all are beyond helpful as I muddle through, reading (including Bubbles' primer and many posts),


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tedtell1's picture
Replies 4
Last reply 2/22/2018 - 9:11am

Folks, here is my path report. FYI, a PET scan and Brain MRI were all clear, I guess my question is, do I really need to go through a year with NIVO every two weeks since the cancer hasn't spread, or even the surgery for that matter? 



Surgical Final Report
Accession #:S18-4295
Taken: 1/31/2018
Received: 1/31/2018
Reported: 2/7/2018
Physician(s): DEVI K CHETTIAR

Final Pathologic Diagnosis
Skin, left upper back, excision:
1. Dermal melanoma
2. Tumor extends to a peripheral margin and to within 0.1 mm of
the deep margin
3. See comment
The lesion is centered deeply in the dermis and the findings are most
supportive of metastatic melanoma. Correlation with clinical findings
and imaging studies is recommended. Dr. Warren Goodman has seen this
case and agrees with the interpretation. Devi Chettiar, PA was
notified via telephone conversation on 2/6/18 at 3 pm.
*Electronically Signed Out By*
Katherine E. Brick, MD
Clinical History
Gross Description
The specimen is received in formalin and labeled with the patient's
name and "left upper back". The speci
men consists of a 2 x 1.3 x 1.2
cm portion of tan-yellow fibrofatty tissue with an attached 2 x 0.6 cm
tan-pink skin ellipse. No orientation is provided and the external
surface is inked green. Sectioning reveals firm pale tan centrally
incised cut surfaces throughout and abutting the margin. The specimen
is entirely submitted in six cassettes.
1. Representative sections
2. Ellipse tips
3-6. Remainder of specimen. cl
Microscopic Description
Histologic sections of skin on six (6) H&E slides from six blocks
are reviewed. There is a dermally based tumor located deep within the
dermis and extending up to the subcutis. There are multiple cohesive
nodules composed of cells with pale cytoplasm, enlarged nuclei,
prominent nucleoli, and abundant mitotic activity. The nodules display
areas of central necrosis and form a mass encompassing the mid to deep
dermis. Immunostains show that these cells are positive for S100,
SOX-10, and Viment
in, and negative for CD34, cytokeratin Oscar,
cytokeratin AE1/AE3, Melan-A, and EMA. The tumor extends to a
peripheral margin and to within 0.1 mm of the deep margin.
Katherine E. Brick, MD
Regions Hospital
Department of Pathology
640 Jackson Street
St. Paul, MN 55101  

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