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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LibbyinVA's picture
Replies 6
Last reply 1/6/2016 - 12:57pm

Just wanted to share some good news from an "old timer" here on MPIP. I am a stage IIIb warrior and right before Christmas I had a clean PET scan. I will be NED for 10-years this June and cannot wait to celebrate. I sincerely hope my story inspires anyone who is feeling down to keep fighting. When first diagnosed, my prognosis was very grim and here I am almost 10-years later and still a member of the "NED Club." So stay hopeful and let me know if you need help!

Libby

I have melanoma but melanoma does not have me!

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yunielth's picture
Replies 2
Last reply 1/5/2016 - 11:34am
Replies by: yunielth, Janner

Hello!!!

My sister was diagnosed in November 2014 of Melanoma, Stage 1a, Breslow 0.6mm mitosis <1, Clark III, the primary was on her middle left clavicle. Since then everything seems to be ok, she have been going to her 6 months dermatologist appointments and all fine.

About a month ago she started with a discomfort on her right knee. She went to the Doctor, he made an ultrasound and diagnosed her synovitis, also made her a MRI on her knee.

The first radiologist said was a fissure on the knee, but later was checked by the head of radiologists and for him was unclear, he saw a dark shadow he never has seen before on that place.

Today my sister went to the doctor office and he told her she need to go to a Hematology Oncology Specialist by order of the Radiologist. By the way we have an autoimmune disease called spherocytosis, but we've always been ok. Previously the doctor did some blood test to my sister more than once and everthing was ok.
Could this be related to melanoma?
I am very worried about my sister, I am afraid this could be related to melanoma. My sister tells me that she has not longer any pain on her knee.
Any advice?
Thank you very much to all and Happy New Year to all.

Yuni

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I just read the Wikipedia page about melanoma and I think that the therapy section should be updated. There is far too little information about the new excellent drugs, on the contrary a big part is about chemotherapy.

Would some knowledgeable person be interested in updating the page? Maybe Bubbles? I don't have enough overview to do it. If someone could write a text, I could put it on Wikipedia with my user there.
Thanks!

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Empire's picture
Replies 10
Last reply 1/5/2016 - 2:33pm
Replies by: Anonymous, Janner, Empire, stars, Azcaddyman

I received a diagnosis of melanoma last week and have been lurking since. I was told it was a 0.8 mm superficial spreading and they were sending me to a surgical oncologist.

I was too shocked to ask questions because I honestly didn't expect the biopsy to be anything other than an atypical mole.  Right now I'm waiting for the surgeon's office to call me about a wide margin excision and a SNLB. 

I did get a copy of the pathology report and now I'm even more confused. It looks like it's not 0.8 mm, but at least 0.8 mm. How concerned should I be or this just a random atypical thing that happens in thin to moderate melanoma?

MELANOMA; EXTENDING TO THE SIDE AND DEEP TISSUE EDGES.

Type: Superficial spreading
Tumor (Breslow) thickness (mm): 0.8, at least
Anatomic level of invasion (Clark level): III, at least
Ulceration: Absent
Dermal mitotic rate (mitoses/mm2): 2
Microsatellitosis: Not identified
Vertical growth phase: Present
Regression: Not identified
Angiolymphatic invasion: Not identified
Neurotropism: Not identified
Tumor infiltrating lymphocytes: Non-brisk
Precursor lesion: Nevus
Pathologic stage: pT1b.

Comment: This is a difficult case with borderline features. Sections
show a proliferation of atypical melanocytes in the epidermis and
dermis. The junctional component is disposed in a confluent fashion
with adnexal extension. The dermal component is present in aggregates
with variable maturation. Nests of bland nevoid melanocytes are also
present, consistent with a component of nevus. As these are
intermingled with dermal melanoma cells, depth of invasion is difficult
to precisely assess in this specimen.

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Anonymous's picture
Replies 12
Last reply 1/7/2016 - 11:08am
Replies by: Ed Williams, Anonymous, Empire, Toby0987, specka, SABKLYN

My diagnosis from a shave biopsy preformed on 12/16/15:

Type:  Superficial spreading

Tumor thickness (Breslow):  at least 1.80mm (base transected)

Anotmomic level (Clark):  at least IV

Ulceration:  absent

Dermal mitotic rate:  3/mm2

Microsatellitosis:  not evaluable

Vertical growth phase: present

Regression: absent

Angiolymphatic invation:  absent

Neurotropism:  absent

Tumor inflitrating lymphocytes:  present, non-brisk

Precursor lesion:  absent

Pathological stage:  at least pT2a pNx pMx

Additional written comment on the Dermatopathology report:  The in situ melanoma extends to one peripheral margin, and the invasive component is transected at the base, precluding accurate measurement for Breslow's depth and pathologic state (deferred to final excision).  Sections show a proliferation of atypical melanocytes in the epidermis and dermis.  The junctional component is disposed in a confluent fashion with pagetoid upward scatter.  Ther dermal component is present in large aggregates without maturation.

MY COMMENTS/QUESTIONS/CONCERNS:

The Biopsy was done on 12/16/15 and the diagnosis was delivered to me on 12/22/15.  While my Dermatologist offered to find a local Oncologist to refer me to, I told him that I preferred to have my treatment handled through MD Anderson, which is about a 3-4 hour drive for me.  

Because of the holidays I did not hear back from MD Anderson until 12/29/15, and an appointment for 1/13/16 was the earliest I could get in to see a surgical Ongologist at MDA. I was also told that for the Oncologist I will be seeing, they were, as of 12/29/15, scheduling surgeries for the week of 1/25/16.  This leads me to believe that by the time I am seen on the 13th of January, they would be scheduling surgeries for the middle of February.

This would be roughly two months since my biopsy was performed, which "feels" like a very long time before I will know officially what my diagnosis and stage is.

Questions that I have:

1.  Is there a way to know if this is a slow-growing type of cancer?

2.  What does a dermal mitotic rate of "3" mean?  Is that good, bad, average?

3.  Overall, the stage of "at least" pT2a is all we know since no surgery has been performed.  Given the report indicates "at least", should I assume that surgery is imminent?

4.  If surgery is required, would that be a wide local excision (WLE)?

5.  At this point I only know that the Breslow's thickness is "at least" 1.80mm, and that the pathologic stage is "at least" pT2a pNx pMx.  Does this mean that I should expect a Sentinel Lymph Node Biopsy (SLNB) at the same time I have the Melanoma surgery (WLE)?  SInce the report says "at least", how can I know if that means the thickness is 1.9 or 2.9 or 3.9, etc.?  

6.  If surgery is imminent, then should I have to wait until my initial appointment at MDA on 1/13/16 before scheduling the surgery to occur after the initial appointment?  I.E., could I go ahead and have my surgery scheduled for the week of 1/25/16 even though I won't have my initial appointment until 1/13/16?

As you can see I'm pretty anxious about waiting all of this time before I know something more definitive and my anxiety (and my family's) grows in proportion to the time I have to wait.  If I had a better understanding of whether a couple of weeks or months matter that much, it would help me to either push for earlier appointments at MDA, or to relax and stick with the times that are available for me at MDA.  Alternatively, should I go ahead and see a local Oncologist who may be able to see me sooner and perform the surgery sooner?

 

Thank you!

 

 

 

 

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Tesevatinib 

Trying to link with iPad...

and trying to to be smart and get research done before my new recommendations from Onc, in case of progression.  Any thoughts are appreciated.  

https://clinicaltrials.gov/ct2/show/NCT02616393?recr=Recruiting&cond=Can...

 

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BrianP's picture
Replies 10
Last reply 1/10/2016 - 3:45pm
Replies by: Anonymous, BrianP, Toby0987, AshleyS

Anyone know if there's a forum equivalent to MPIP for Pancreatic Cancer.  I have an aunt that's not doing too well and I'm trying to do some research for her.  I know they are doing some nivolumab trials.  Anyone heard if they are having any success.  Thanks.

Brian

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specka's picture
Replies 3
Last reply 1/4/2016 - 1:14am
Replies by: specka, AshleyS

Is it more likely to see overall progress while on keytruda or its it likely to see progress in one area and less progress in another?

The reason I ask.. My husband had a few bumps show up that were confirmed melanoma. The last ct and MRI showed Mets in the lungs, spleen and liver. He started Keytruda a little before the ct and mri but there was a months lapse between ippy and keytruda.

The bumps are gone. But I don't want to get my hopes up too much. I want to know if that's a good sign. If it's likely that bc we can see progress, that his internals are responding too.

Rebekah

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/4/2016 - 4:53pm
Replies by: mkirkland, Scooby123, AshleyS, gregor913, jennunicorn, Anonymous

I had my first infusion of ippi monday. My daughter was sick with a fever that week also. By friday night I started feeling ill. (99 degree ) By saturday morning 130am I woke up with a 101.5 fever with chills and sore throat. I do have alot of congestion too. Ive been taking ibuprofen where it will lower the fever then the fever will go back up. This morning I also noticed that the right side of my neck is a lil tender and slightly swollen. ( no bumps or hard lumps) I had a left axillary lymph node disection dec 1st. All 11 nodes negative. Any insight on ippi treatment will be grateful.

Greg

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Rlukas79's picture
Replies 6
Last reply 1/12/2016 - 2:11pm

I dont have a history of Melanoma but I do have a history of a few moderately atypical moles.  I have had 9 moles removed over teh past 6 years.  Three of them were moderate and required further excision.  The others ended up being either normal or mildly atypical.  I know that atypical nevi may never turn into melanoma and you are more likely to find melanoma in a new lesion rather than an existing one.

I am 36 years old, male somewhat fair skin and blonde hair and blue eyes.  No family history of melanoma but on my fathers side, somewhat "moley".  In total I probably have between 30-50 moles.  Most on my lower half, with a few scattered on my back and a couple on my chest.

I have spot on my stomach that has been there for as long as I can remember,  It was always a light tan/almost yellow pigmented symmetrical spot.  I say spot because I'm not even sure it's a mole.  Anyway, 18 months ago I damaged that spot on accident when I decided it would be to use nair on my chest/stomach.  No problems with the first application but I added a second application.....after I took a shower to rise the first application.....HOLY MOTHER OF GOD, the burning was unreal.....About a few hours later, I noticed that pigmented area was red in color and had developed two ruptures inside the pigment.  A little blood etc.  It passed a skin check in Late July of 2014 but at the time was still healing and I'm not sure how long the doctor really took with it.  It eventually healed with a bit or redness to it, most likely scar tissue.  

A few days before christmas this year, my anxiety was on high alert but was due to other things going on in my life.  Somehow I became fixated on this spot.  My wife said that it looked no different than it did every month before that.  I'm not the one to wait things out and I immediately got in with a Dermotologist the next day.  The PA told me immediately that since I'm fair skinned her policy is to remove anything that looks questionable/irregular.  I told her about the history of the spot and what happened and she told me she was leaning towards it being okay but eyes can only tell you so much, which I agreed with no doubt.  I was told it could take two weeks to hear anything back and will only hear back if something is wrong (atypia, skin cancer).

I knew i was due for a skin check again but I decided to stop using the dermatologist chain of offices I was using and look for someone that is affiliated with centers that deal with skin cancers etc.  I know I dont have the history of skin cancer but I wanted to deal with a dermatologist that knows what to look for. I have somewhat of an increased chance due to the atypical moles I've already had removed.  I found someone who is affiliated with Robert Wood Johnson hospital in NJ.  I went for a skin check a few days ago and to my surprise I didnt have anything to remove.  Everything a had on me was normal except for one slightly mild atypical mole.  They used a new dermoscope that has a big lens in the middle and LED lights around it to better aid the doctor in looking at lesions.  That was a first for me.  

He saw the area that the other office removed the spot from and I told him I actually had pictures of it.  One from when I damaged it with nair and others from the last week.  He looked at the picture and told me wasn't even sure it was a mole and remarked that he didn't think it was melanoma either.  He also said a picture can only do so much as well.  

I guess I'm rambling here but in general do biopsies take that long?  two weeks?  I have to imagine if it were something malignant they would know sooner and let me know sooner.  My anxiety is getting the better of me here.  I've enclosed links with the picture of the spot that shows when I damaged it 18 months ago and what it looks like now under normal lighting and flash lighting from a camera.

If anyone has any advice for me, please let me know.  I know a lot of you are dealing with something way more concerning than what I am dealing with.  Im just a 36 year old guy with an amazing 3 1/2 year old daughter who wants to stay around for as long as God lets me.

From July 2014 - Damaged spot [URL=http://s837.photobucket.com/user/rlukas79/media/July%202014%20skin%20dam...

December 2015 [URL=http://s837.photobucket.com/user/rlukas79/media/december%202015%20heavy%...

[URL=http://s837.photobucket.com/user/rlukas79/media/december%202015%20heavy%...

 

The size is just about 6mm

 

 

 

 

 

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mrsaxde's picture
Replies 4
Last reply 1/3/2016 - 6:35pm
Replies by: Bubbles, mrsaxde, kylez

I had blood work and a restaging CT scan done on Friday (my prior scan in September, after 3 doses of Keytruda, showed all my lesions slowly shrinking. Hoping for similar, or even better, results this time!)

But my question is about the "IG Auto" value in blood tests. I never paid much attention to it until I was looking over my blood test results, then I looked it up and found that it is a measure of antibodies in your blood. Mine was in the middle of the "normal" range.

Does that test only measure certain types of antibodies, or only naturally produced antibodies? That is my assumption, but I didn't know for sure and couldn't find the answer. I'm wondering because if it's a measure of total antibodies, I would think it would be off the chart if you're getting an immunotherapy.

What is off the chart in most of my blood work is my eosinophil count. This time that was almost double the top end of the reference range. I saw somewhere where they think that may be a marker for the effectiveness of immunotherapy, so I always hope that one will be high, and so far, it always has been.

Thanks in advance for any info you have on this.

-Bill

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Lin P's picture
Replies 2
Last reply 1/2/2016 - 6:28pm
Replies by: Bubbles, emagdnim83

Hi.

My mom was diagnosed with Stage iii melanoma in the Christmas eve.

 

Now her state is..

 

● No primary lesion found.

There was a rash removed 10 years ago. There's a possiblity the rash was the lesion, but no evidence left.

 

● Numerous lymph nodes involved on her neck and shoulder. Oncologist says its unresectable because it's right next to bunch of blood vessels.

 

● She started Keytruda last week, and radiation oncologist will treat the lymph nodes with Tomotheraphy in a week.

 

 

The questions I have is..

 

● Is it common to use lower dosage of Keytruda?

My mom is receiving 1.5 ml/kg, which is less than the recommended dosage(2 ml/kg)

I am afraid if it may not be effective enough.

 

● Anyone with unresectable stage iii melanoma?

If anyone is fighting or have survived unresectable stage iii melanoma, could you share the story, how you were/have been treated?

 
● Is it Okay to take Selenium during radiation theraphy?

 

 

 

Any help, experience share will be appreciated!

 

 

 

I'm trying to stay positive but can't stop myself feeling doubt about everything including her medical team. There's NO DOCTOR WITH ENOUGH EXPERIENCE because It is very very rare case to have melanoma in my country. There's no statistics, no patients forum, nothing.

 

I feel very lucky that I can read and write English, and to have found here. I am really learning a lot from MRF. Thank you all.

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jdpatterson2013's picture
Replies 3
Last reply 1/2/2016 - 2:57pm
Replies by: Janner, jdpatterson2013

I am 32 years old and have had several moles taken for biopsy over the last 15 or so years. A couple of weeks ago I had a mole near the back side of my knee taken for biopsy. This mole was approx 2 mm in diameter and had even borders. But it was very dark, but consistent in color. My derm had seen this mole before several times so Im not sure why he decided to take it off.

The biopsy came back as "Pre cancerous". My question is this the same as being Atypical?

Also I was told after the full excision that the tissue will be sent to pathology. But if it was already said to not be melanoma in the initial biopsy then why is post excision pathology required? Should I be concerned or is this routine for Atypical mole excision?

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Wifeof1's picture
Replies 1
Last reply 1/2/2016 - 10:37am
Replies by: Janner

Hi, everyone. I'm so glad I found this forum.

My husband is 36 with a rare autoimmune disease called CVIC, we have 3 young children, and we recently moved across country where we know nobody. We moved here in summer and DH (dear husband) had a mole on his lower back near the spine that started to protrude. Within a month or two it was about the diameter of a nickel, bluish-grey, and started bleeding. He had it biopsied beginning of November (took us a while to get him in with needing referrals, etc) and within a few days they called us back. Melanoma, aggressively deep, 3.9 mm, ulcerated, and high mitotic rate. 

It took another 3 weeks to see the surgical oncologist at what is supposed to be the top melanoma center on the west coast with one of the best doctors (he is great, but we are used to a more personalized, small town standard of care where the actual doctor calls back with results in a timely manner). 

Doc decided due to presentation at initial biopsy, PET scan was to be done before SLNB. I had to call the office for results and they called him back. PET showed uptake in lung, chest CT scan was schedule for a few days later. Again, we had to call for results and CT was inconclusive but nodule was in upper right quadrant and didn't look like  melanoma.

Primary melanoma was on the trunk in a spot where the oncologist said it could spread to either armpit or groin lymph nodes.

SLNB was on the 18th. Once again, were told results would be by Christmas Eve. DIdn't hear back. I called the 28th as soon as offices were open again and they called DH back with the news that BOTH armpit and groin lymph nodes that had been removed/biopsied were positive for melanoma. He didn't ask the right questions, though, and they didn't give many answers. This was Monday. It is now Saturday and we go in this coming Monday (the 4th) for follow up with the doctor where I'm sure we will know more. Nodes weren't palpable and didn't show any evidence of disease upon extraction, so that is good news - but I am wondering if this will be considered stage 3 or 4 because it has spread to two different spots. The chest CT scan will be repeated, too.

Has anyone had experience like this where primary was on trunk and it initially spread to two different areas? And it is now beginning of January - two months after initial diagnosis - and we still don't know what stage or have many other details. Is this common for a big city melanoma specialist? It's just so frustrating. The emotional struggle is taking its toll and like I said, we have no family within 3000 miles so it's been tough with the little ones.

Thanks in advance for your help. I'm sorry everyone is going through this, yet I'm glad there is hope with new treatments and a forum like this where we can share experiences. 

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Cinthia16's picture
Replies 4
Last reply 1/5/2016 - 12:59am
Replies by: Anonymous, AshleyS, Donnasue0611

Hi my name is cinthia 

I got diagnosed with melanoma 3 weeks 

Ago am 7 months pregnant, even tho the doctor said it was caugth on time im so scared that it has spread i dont want to leave my daugthers alone. The doctor told me i have to do check ups every 3 months for 2 years 

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