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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jennunicorn's picture
Replies 2
Last reply 1/10/2016 - 11:50pm
Replies by: jennunicorn, Anonymous

http://www.puravidabracelets.com/products/melanoma-awareness

Just found this site with a lot of different awareness bracelets. The Melanoma awareness bracelet is $5 and $1 of every bracelet gets donated to Melanoma Research Foundation. Thought I'd share. 

-Jenn

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mrsaxde's picture
Replies 11
Last reply 1/9/2016 - 6:18pm

Well, I saw the doctor today after my latest CT scan a week ago. The news wasn't quite what I had hoped, but it wasn't bad at all. There have been no changes since September. Several small spots in my right lung are still the same size, as are the spots on my skin that are near the primary site. There is nothing new anywhere. I would have liked to hear that everything had shrunk some more, like it had in September, but I can deal with this.

A couple of things that maybe some of you can help me with....

1) I recall seeing someone's post on here saying that their oncologist believes that the "sweet spot" for Keytruda to kick in is somewhere around infusion #10. Does anyone know if that's accurate? Tomorrow will be #9 for me.

2) What's the possibility, given that nothing has grown, that what is still showing up on this scan is actually necrotic tissue that my body has not flushed away? Does anybody have any knowledge of, or experience with that possibility?

I'm actually doing well. Feel good, spirits good. My oncologist still thinks that Keytruda might help me beat this, given my overall tumor burden is very low.

-Bill

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Nanners10's picture
Replies 11
Last reply 1/8/2016 - 6:50pm

Hi all,

Just writing to see if anyone has any thoughts on the following:

Original diagnosis May 2002, WLE removed 2.24mm mole and no further treatment was deemed required.

Recurrence in regional (groin) lymph node basin November 2014. Groin dissection performed only one malignant node of four taken. Completed ipi/interferon trial in June 2015 (received ipi at 3mg dose).

One enlarged groin and one enlarged pelvic lymph node found on CT scan November 2015. Groin node was biopsied and determined to be melanoma. Surgery performed Dec 2015 to remove both lymph nodes. Three nodes were taken in total, the two enlarged ones were positive for melanoma, the other one was clear.  

Now, options that have been given are radiation and interferon. No trials are available for me as adjuvant therapy at stage 3b because I already had ipi. 

My dr. says that he doesn't think interferon will do anything for me because the ipi failed and it already has such low stats to start with. He says it will only make me sick for a year but nothing good will come of it. How does he know this? Is there anything to link interferon and ipi? Or is this just on the fact that ipi has a better track record than interferon and if that didn't work than chances are interferon won't either. I was considering interferon as a last resort if only for the fact that it would delay recurrence and who knows what drugs will come along in that time. 

Radiation is probably a possibility (waiting on my consult) but there aren't any studies that show increased overall survival (to my knowledge).

My dr. says that there are lots of treatments for me "down the road" because of my BRAF mutation. Problem is that down the road means stage iV and that's not very comforting.

I feel like I am just waiting on another recurrence.

I would love to hear from anyone in a similar situation to get your thoughts on what you have done or been offered. 

Nancy

 

 

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darinohio's picture
Replies 2
Last reply 1/9/2016 - 3:58pm
Replies by: _Paul_, jennunicorn

  I first want to say this is a very helpful forum.  i check in occacionaly the warmth and knowledge 

you all share is very comforting.  I have a question hopfully someone can relate to. 5 yrs ago I went 

thru a full year of inferon treatments for stage 3 nodular melanoma. i still see my oncologist regularly.

it seems about once a year a new mole or spot shows up. He has it removed and they always come back melanoma. Each year there are more spots. I see him in 2 weeks and i have 6 more suspicious spots.

  My question is how long does the interferon therapy last ? Are these considered recurrances?

Can I do another kind of therapy?  I'm just worried cause the spots are appaering more frequently.

                 Thank You and Gos Bless

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LisaName's picture
Replies 5
Last reply 1/11/2016 - 5:24pm
Replies by: LisaName, Janner

Okay, so to beging with I would like to say that 6 months ago I got a mole cut out because it was raised, big and peeling off. Result came as dysplastic nevi with proliferation(borderline thing, not enough to be called melanoma in situ, but not just atypical mole). I got re-exision, margins clear and having my check ups.
I am fair-skinned, but I don`t have that many moles. I have only one mole left up to 1 cm and the other one got removed.

So i have that 1 mole left on my tummy that is being watched by 2 docs: private dermatologist(who worked in big dermatoonkology hospital before) and dermato-oncologyst.  I have had it all my life, both doctors describe it as typical atypical nevus: up to 1 cm, brown colour, darker brown raised central papule. They have checked it 6 months ago 2 times(as i was very panicked) and month ago private derm said it is completely calm and no changes, dermato-oncologyst didn`t even pay much attention to it, only when student that was with us pointed out at this mole he said "No worries this is regular atypical nevus, lets just keep watching it".

But 2 weeks ago I became stuck on that mole, I was checking it everyday, rubbing it, stretching and touching papule all the time. Once I even rubbed it with napkin and here we go some mini dots appered on the top that were just dry. After that I started using moisturiser all the time and in few days those dry dot flaked off with shower. Now after 2 weeks it is almost back go normal and the papule is only getting more dry if in cold place. But you don`t feel it while touching, it is very soft. You can see it only in specific light that there is one tiny flake left that is smaller than 1 mm. It didn`t change size, colour, surface(anymore after that) and I am going tomorrow to doc to have it removed as i almost didn`t sleep and eat those days.

Janner, tell me please is it now this way that any changing mole after bad experience will now mean that it is turning? Is there at least one chance that it is just coinsidence that second mole got irritated? I am very scared for everything right now and wanted to know if all changing moles are dangerous and if this can be considered as one of the changes that you always mention to watch for?
And also docs checked me just 1 month ago and one of them sees melanoma patients everyday and he didn`t even get worried about the mole, is it normal?

thank you 

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mkirkland's picture
Replies 5
Last reply 1/7/2016 - 11:12am
Replies by: AshleyS, JuTMSY4, Anonymous, mjanssentx, CHD

Does anyone know of any therapy or remedies to help regain feeling after lymph node removal? I had my surgery in September at my right groin and haven't really regained much feeling in my upper thigh. It goes down the inner thigh, down to my knee and in the groin area. (And even a little further over) I know it's possible not to regain any but if anyone has any helpful hints I would greatly appreciate it. 

Misty 

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scots's picture
Replies 5
Last reply 1/6/2016 - 10:13pm
Replies by: BrianP, scots, kpcollins31

I have an appointment next week at Duke. I wondering if anyone had been treated there and what there experience was. In Sept. a CT showed numerous liver mets. After 3 doses of ippi and opdivo a  2nd CT showed the cancer still growing and spreading so I!m off to Duke for consult. 

Thanks

Scot

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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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