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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1derdog's picture
Replies 3
Last reply 5/12/2015 - 9:19pm
Replies by: 1derdog, arthurjedi007

My husband was told that he has a secondary melanoma in his pancreas (uncinate process) that is not respectable due to its close proximity to the main vein in that area. His doctor wants him to start on Yervoy and if that doesn't work then he will place him on Keytruda (pd1).  My questions are:

how effective is Yervoy for cancer on the pancreas?

because my husband's cancer is aggressive - can we insist on him being placed on Keytruda right away instead of waiting to see if Yervoy works first?

any other suggestions would be very much welcomed.  

Thank you

wife (caregiver)

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Anonymous's picture
Anonymous
Replies 14
Last reply 5/19/2015 - 9:03pm

My mother was recently diagnosed with Stage III melanoma, primary site unknown. She had a small mass in her right parotid that her ENT orginally though was benign. During her surgery on April 2, 2015 the doctor was concerned with the appearance of the mass and a frozen biospy was completed. Orginal diagnosis was non-oat cell Small Cell Carcinoma. It was two weeks later and path results going to Mayo that they confirmed she had Melanoma. Her orignal surgery was converted into a total parotidectomy and level I and IIb dissection. PET/CT scans just confirmed she still has three localized lymph nodes positive with melanoma and MRI was clear. We are seeing the melanoma specialist and he has suggested my mother participate in a clinical trial where she will be started on High dose interferon for four week five days per week which then moves to the standard three SQ injections per week with Ipi every three weeks two infusions. The trial is around 3 or 10 mg doses of ipi, and she would then receive the radical neck dissection on week six. Afterward she would go into a maintenance phase of the interferon with SQ injections and the Ipi would eventually be given every 12 weeks for the entire study for approx. one year.

 

I am concerned about the delay in the radical neck dissection for six weeks and knowing all the side effects with the study.

 

Is there anyone else who is going through this study right now, or any one have additional insight?

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Gordknight's picture
Replies 12
Last reply 5/13/2015 - 10:27am

Hi everyone.  I am in a really shitty spot right now.  If you read my earlier posts I had a 0.22 stage 1a melanoma removed from my neck back in October.  I had the WLE done in November and had my regular checkup a few weeks ago and everything was said to be healing nicely.  However, even one month after the WLE procedure there was one spot on my scar that looked darker than the rest.  Occaisionally some dead skin would be on that spot that I could easily remove.  

Last night however another piece was there, I pulled it off and it started bleeding.  The spot which almost seems under the skin and not on top of it is darker, almost like a black mole.  I immediately called my derm and he is seeing me Wednesday morning.  I have also just accepted a job for the summer that I leave for on monday morning after my appointment, but if this is my cancer returning I dont know how keeping this job is going to be possible with all the surgery I am sure I will require.

I am just confused.  I had clear margins  Is is possible that a melanoma that took 3 years to turn into a 1a to come back and grow to this size this fast?  I am just at a loss and feel completely drained and beaten here.  Any advice or help or experience would be most helpful.  Thank you.

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/11/2015 - 11:32am
Replies by: Anonymous, Janner, ldub, tgeorge1

Does a visibly growing/evolving dysplastic nevus (noticeable but not significant, radial growth - not raised, not bleeding or crusty just expanding in size ever so slightly) always mean it's likely turned to a melanoma?  I have a biopsy scheduled for this week and am very nervous. Do more than not that are changing confirm to be melanoma?

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looptwelve's picture
Replies 2
Last reply 5/9/2015 - 7:04pm
Replies by: Janner, looptwelve

Hey everyone,

I have a quick question on my pathlogy report. I know these questions are fairly common on here, so please bear with me.

My question is, I've commonly seen "atypical melanocytic cells" used to describe a dysplastic nevus not MIS. Is this truly a MIS nevus or is it dysplastic but trending toward melanoma? What's the distinction between the two?

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Replies by: Speedster, dentholla

Back on April 14, 2015, I was patient #1 for the  Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III clinical trial for Stage III metastatic melanoma patients - resected tumors, No Evidence of Disease. 

Who else is in and what are you experiencing?  I"m super pleased with the entire team there having had a less that stellar experince at MD Anderson, which is an amazing resource none the less. .

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/14/2015 - 6:00pm

Dear all

I need a comment from You

Brief story:

In the last year (February 2014), my wife had a mole removed from her back (near spatula). Mole was removed for aesthetic reasons because it do not expanded, do not itched, there was no redness, etc. Unfortunately, the mole was burned by laser (stupidity does not hurt). After the scab fell off it turned out that the mole started to grow again. For this reason, we went to a surgeon to remove what has grown. It turned out that it was a melanoma (Clark III, Breslow 0.6 mm), but we do not really know what were the characteristics of the primary tumor. In the next stage wife had biopsy of sentinel lymph nodes. The result was positive. Metastasis to the two sentinel nodes as single cells and cell clusters on a length of 2 mm. The result was a complete lymphadenectomy (September 2014). Analysis showed that the remaining nodes were clean. We were offered participation in clinical trials. To this end, they sent lymph nodes and a mole from her back to indicate the BRAF status. In the case of a mole they failed to determine the BRAF status as ,, Quantity not Sufficient to test'' what I understand. However, in the case of nodes result was as follows:

BRAF status - No tumor Indicated
BRAF comment - Result of no tumor confirmed by 2 Pathologists.

In February wife had a CT scan and everything is in order.
Do you think such a result should prompt us to re-execute the histological examination of sentinel lymph nodes? We not yet talked with our doctor about this.

Best

M

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/13/2015 - 5:24pm
Replies by: Anonymous, Patina, Bubbles, Mat, Julie in SoCal

Do any studies allow patients w brain mets?  Does yervoy alone ever work on them or do they need to be radiated or gamma knife?

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Replies by: Bubbles, arthurjedi007, Anonymous

Did I make a mistake? Went to 2 long distant places and signed the forms so they can get my biopsy material that was done locally so they can do their test to see if I qualify for their trial. The tests will be done at different places.

Wont that create a bottle neck where only the first place that got the material sent to them would do the test then the other place would have to wait until that test is done? Or would the local place send only a small amount to each? Good luck trying to get any info from the local place. It took my doc 3 months to get the result from a trial he tried to get me into.

If I did make a mistake then I need to call the place that I'm not sure about their trial anyway and have them not do the test. The other place I really want in that trial.

Artie

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newmanmark's picture
Replies 2
Last reply 5/8/2015 - 4:20pm
Replies by: G-Samsa, ecc26

I started the Mekinist and Tafinlar combo almost 3 weeks ago.  So far so good with minimal side effects.  The only thing I have noticed is aching/sore knees.  I started a running program one week before I began treatment and continued after I started the medications.  Last week I noticed my knees were aching but I attributed it to the running.  Well, the pain has lasted for over a week now so I'm pretty sure it has something to do with the medication.

Has anyone else had this issue on the combo therapy and if so have you been able to manage it?  What are you using to ease the soreness.

Thanks
Mark

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/11/2015 - 1:12pm
Replies by: Julie in SoCal, Speedster, Jubes, arthurjedi007, Anonymous, Mat

I have heard some people mention that steroids, while often needed for side effects, reduce the effectiveness of Immunotherapy drugs such as Yervoy, Nivolumab, Keytruda etc. My oncologist seems to have a different opinion - that steroids does not reduce the effectiveness of the immunotherapy drugs.

Has anyone heard from their melanoma oncologist one way or another about this?

Thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/7/2015 - 6:31pm
Replies by: Donna

Has anyone ever experienced ongoing pain beneath right breast, w/o any obvious lump or anything?    Any movement it hurts, a rigorous walk, coughing, laughing, etc.!   It's been over a week and I'm trying to wait it out and see if there is any change but it is quite uncomfortable and interfering with daily living.

Cathy

Stage 3a

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/7/2015 - 11:52am
Replies by: Janner, Anonymous

Looking for help. Trying to understand my husband's pathology report. Doctors say his melanoma was in situ but I'm trying to understand because it doesn't say how big the margins are only that it was caught early and was low risk.  

-residual malignant melanoma in situ

-margins are negative

-previous biospy site changes

Microscopic description: Sections show a proliferation of junctional melanocytes exhibiting confluent growth along the dermoepidemal junction and pagetoid spread.  The tumor is located in close proximity to an area with changes consistent with a previous biopsy site. All margins are negative. 

Gross Description-

Received in formalin, labled right ear lesion, is a irregular skin with subcutaneous tissue with a single stich marking superior and double stitch marking posterior.  The specimen measures as follows: 2.2 cm from superior to inferior, 1.8 cm from anterior to posterior and 0.4 cm from superficial to deep.  The specimen is inked as follows: Green for posterior half and black for anterior half. 

 

I didn't go with him to his follow up appointment and just looking for some help understanding this. 

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eturner82's picture
Replies 8
Last reply 5/15/2015 - 10:42pm
Replies by: _Paul_, RJoeyB, Wheels1994

Hi guys,

I always like to have a plan B for my husband here is a run down on my husband and the treatments he had had.

May 2007- stage 1 mole on right shoulder removed

Feb. 2, 2013- Yearly derm appt. dr feels enlarged node in right arm pit

Feb. 18, 2013- Meet with Mel specialist UVA- ATTEMPTS biopsy of node but only pulls fatty cells and spindle cells- Orders MRI AND CT

Feb. 23, 2013- MRI of brain clear- CT showed "snowstorm" small areas on right lung

March- Rt. Lung has biopsy- NEG (no cancer ) biopsy

April 2013- 6cm lump removed from right armpit and is POSITIVE for mel

May 2013- All nodes removed from right arm- NED

July 2013- Radiation to right armpit

Sept 2013- CT of chest ( was going to do a vaccine trial at UVA)- CT showed he was not NED and had bone met to lower spine

Nov 2013- IL2 - after 2 rounds scans show growth- Bone Mets

Feb 2014- starts Braf combo drugs- responded until July 2014- Bone mets

Sept 2014- starts IPI and receives all four doses ( scans show progression) Bone Mets( spine, hips, ribs and skull) Bone mets are to numerous to count and both Lungs have multiple mets.

2015- STARTS PD1

Which now brings use to May 2015- First set of PD1 scans showed 1 new tumor in lung and new adrenal gland- continued on with PD1 (giving plenty of time for PD1 to work) scan coming in one week- He has had a rib break in this time and pain in his spine which has lead to a X-RAY that showed a T-5 spinal tumor and radiation was given to the area- last week arm pain lead to large arm tumor being found and rod being placed in arm today.

Needless to say I am very nervous about next Mondays scans and wondering if anyone has any suggestions on our next step if PD1 is not our magic bullet.... Would he be someone who could even have TILS?

 

thank you 

EMILY

 

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