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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arthurjedi007's picture
Replies 15
Last reply 5/8/2015 - 1:50pm
Replies by: Anonymous, arthurjedi007, ecc26, JoshF, Wheels1994, Mat, RJoeyB

Basically they have several immunotherapy trials with no openings. They are phase 1 stuff for things they briefly mention in the videos we watch that they are looking into. Also if I understood right although the lag3 pd1 trial has arms for those of us who failed pd1 they haven't started filling them. they have one opening for one trial they have not given to humans yet but you have to have a certain protein on your tumor biopsy so should know in about 3 weeks. Talk about a ratty if that happens. 

He also thinks TIL is an option if you can get in.

For those who have ran out of immunotherapy options he has seen a chemo combo do really good. Way better than they used to see. I forget the names but he said they are fda approved.

Artie

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/8/2015 - 7:52am
Replies by: arthurjedi007, Anonymous, Mat, RJoeyB, Janner

What does bone tumor pain actually feel like?

I have a history of melanoma with 1 recurrence in the past 2 years and have been having increasing pain in my right hipbone/pelvic area, sometimes it radiates slightly into my back, sometimes a bit down my right leg, but mostly it seems to be right at the hipbone.  It has been gradually increasing for a few months but has just gotten really bad the last few weeks, so that it went from occasional and more of a dull ache, to constant and sometimes almost unbearable, though it will reduce back down to a dull ache, but now it is always there. 

I am going in for a CT scan but I can't seem to find much on what bone pain from tumors might feel like.   Melanoma lesions can be small, so I am not sure how aggressive I should be in following this up if the CT doesn't show anything.  Should I ask for a PET CT?

Does this sound anything like bone tumor pain to any of you?

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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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Anonymous's picture
Replies 2
Last reply 5/7/2015 - 6:11am
Replies by: AshleyS, Wheels1994

With bad luck in the past on just getting the Dr they give you, we're asking for help. We have done alot of research and want a Dr to go over all treatment and clinical trial options weather at their location or another state.. Thanks

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Anonymous's picture
Replies 2
Last reply 5/6/2015 - 4:20pm
Replies by: ecc26, Julie in SoCal

Hi All,

I recently posted about a strange side effect from Keytruda that I started having about 6-7 months into treatment. Cramping and soreness all over my neck and torso with severe movement restriction. My newest scans showed a further shrinking of the tumour in my lung to 3 cm x 1 cm and my bloods were all good although the inflammation markers were a little high.

I have been put on steroids for a week- 25 mg prednisone and it improved a lot. Now we are weaning me off 5 mg per week to see how I go. We will not continue with the Pembro until we have it under control and i suppose there is a chance that they may not put me back on unless the cancer starts to grow again... scans again in 3 months. My doctors said there are cases where the drug keeps working even after it has been stopped and they are hoping that in my case.

Has anyone else had to stop Keytruda and go onto sterooids because of side effects, and did your cancer start to grow again after an initial good response? How long till it started to grow again?

Thanks

Anne-Louise

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Anonymous's picture
Anonymous
Replies 0

We read every day but do not want to miss anything. Is there somewhere to get research help on stage 4 melanoma trials and treatments? This would be a easy task for a melanoma student. Maybe a student at MD Anderson? Thanks

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Wheels1994's picture
Replies 3
Last reply 5/5/2015 - 3:02pm

I've had many side effects come and go.  However, this Peripheral Neuropathy that I've had for the last 5 months has been ridiculously annoying.  Constant numbness and tingling of the feet and numbness of the finger tips.

Took all of the neurology tests to rule things out.  The theory is that the when I had 3 treatments of CVT following my Yervoy failure, the 3 Cisplatin doses caused a slow, progressing case of peripheral neuropathy that took about 3 months to get where it is today.  The docs seem to think it will get better with time and possibly subside completely.  There's also thought that it could be permanent to a degree.

I'm thankful that this is the only thing I'm dealing with right now at stage 4.  Just wondering if anyone else has had this experience with peripheral neuropathy:

How long did it last?  What was your experience?  What drug caused it?  Did it progress slowly then level out?  Duration?

 

Thanks in advance for a recount of your experience!

Matt

Matt King

Diagnosed Stage 4, July 2014

MD Anderson, Dr. Patrick Hwu

IU Health Simon Cancer Center, Dr Ted Logan

Currently responding to KEYTRUDA since January 2015

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Replies by: Janner, kpcollins31

I love my onocologist but he can be so vague....please help me understand.

just had surgery a week ago for right axilla lymph node dissection.

 

Final Pathologic Diagnosis:

A. Lymph Nodes, Right Axillary, Level 1 and 2, Dissection:

       * Metastatic Melanoma involving matted lymph nodes, 5 cm aggregate;  14 additional negative nodes

B. Lymph Nodes, Right Axillary, Level 3 and 4, Dissection:

     * Metastatic Melanoma in one of 4 lymph nodes, 1/4/

    * Metastasis spans up to 3mm.

   * No extrandoal extension is identified

C. Skin, Right Supraclavicular Area, Wide Excision:

    * no melanoma identified

    * previous biopsy site

 

Comment:

In  conjunction w/ previous Path report from 3/13/15 , pathologic stage is pT3a pN3 (matted metastatic nodes)

BRAF mutational analysis was performed on prior biopsy 

 

 

 

ok my previous biopsy i posted as well the path reports, but i dont see anything saying BRAF, i know i am clueless.

 

They are reveiwing my case during tumor board tomorow to come up with the next plan of action, be it radiation or immunotherapy. But I am so clueless. I dont know what any of that means and it seems he just likes to be vague and keep it moving. So basically i am still waiting. But hey least they got these nasty tumors out of me.

 

Anyone that can help me understand this will be greatly appreciated...

 

 

 

 

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vince1962's picture
Replies 3
Last reply 5/5/2015 - 2:19pm

Would like to know whats out there if there is anything!! what type of treatment stage 4 melanoma and hep-c is there a combo or single type treatment. Any advice, Thanks

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affguy's picture
Replies 9
Last reply 5/5/2015 - 11:33am

My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks).  Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16).  In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago.  A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen. 

We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next.  The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not.  My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order.  Of course I'm not sure what further options would exist at that point besides ipilimumab.  He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/5/2015 - 11:06am
Replies by: Anonymous

What is the best hope for small nodular metastatic melanoma that originated as mucosal (anus)

Are these smaller nodular types more diffucult to treat?   

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Anonymous's picture
Replies 6
Last reply 5/4/2015 - 10:59pm
Replies by: Anonymous, Janner

I was diagnosed with a lentigo maligna in the bowl of my ear and had surgery and a skin graft a few months ago.  I am a teacher and coach; my job puts me in the sun many hours a day in the deep south.  I'm a 49 year old male in otherwise, good shape.  I spotted this new "spot" and showed my dermatoligist.  The shave biopsy came back as a lentigo maligna...I have been seeing my derm on a regular basis for years, have had a few moles removed, and  most came back "mild" with one or two coming back "moderatley" atypical...until this one. So, I saw an ENT oncologist who gave me some options. I chose to stay with him and do an aggressive WLE instead of Moh's.  He took out the skin in the bowl of my ear and the cartilage underneath.  All the margins can back negative and no evidence of any melanoma in the underlying cartilage.  The pathology again came back as lentigo maligna - in situ.

They tell me  I am lucky to have caught this early, but I still feel somewhat confused.  I worry that my job puts me in the sun so much and that lentigo maligna has a high recurrence rate.   When I asked my derm and the oncologist about moving forward...should I stop coaching or participating in outdoor activities?.. they say, "No, just be "sun safe".  I have been and will continue to be "sun safe", but the anxiety I have when outside is sometimes all I can think about. Should I even be outside in the heat of the day?  If I am, will it make it more likely to recur or get a new or different melanoma?   Too many questions....

 

 

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mskin314's picture
Replies 6
Last reply 5/4/2015 - 10:46pm
Replies by: Janner, mskin314

Hello,

I just received a report from my father, who has a Malignant Melanoma - specifically polypoid nodular melanoma. 

The doctor classified it as a PT4B with a 16/MM2 Mitotic rate. I have no problem finding info on this stuff, altough I'd appreciate any info/experience anyone has. 
 
I need some help in understanding the below underlined text I have found on the report that I beleive is very important, I'm just not sure how to interpret it.
 
Entire report below: 
  

Gross Description:

AN ELLIPSE OF GRAY TAN SKIN MEASUREING 3.5 X 1.5 CM, AND UP TO 1.0CM IN DEPTH PROTRUDING ON THE SKINS SURFACE, THERE IS A POLYPOID SHAPED TUMOR MEASUING 4.0 X 3.8 X 1.5 CM. EXTENDING UP TO 0.4CM FROM THE CLOSEST SURGICAL MARGIN. THE SPECIMEN IS NOT ORIENTATED, MARGINS ARE MARKED WITH BLUE INK, CUT SECETION THROUGH THE TUMOR REVEALS BEIGE, SOFT, HOMOGENOUS TISSUE. SERIAL SECTIONS ARE SUBMITTED CODED I TO XII. SECTIONS FROM IV TO VIII ARE BISECTED.

 

FINAL DIAGNOSIS

A.      MALIGANAT MELANOMA, SEE CASE REPORT BELOW

REMARKS

A.      SHOULDER, LEFT UPPER BACK TUMOR, REMOVAL.

COMMENTS:

SURGICAL PAHOLOGY CANCER CASE SUMMARY MELANOMA OF THE SKIN: BIOSY, EXCISION, RE-EXCISOIN PROCEDURE: EXICSION SPECIMEN LATERLITY: LEFT TUMOR SITE: UPPER BACK

TUMOR SIZE GREATEST DIMENSION: 4 CM MACROSCOPIC SATELLITE NODULE: NOT IDENTIFIED

MACROSCOPIC PIGMENTATION: NO PRESENT HISTOLOGIC TYPE: NODULAR MELANOMA MAXIMUM TUMOR THICKNESS: 15MM ANATOMIC LEVEL: IV (MELANOMA INVADES RETICULAR DERMIS) ULCERATION: PRESENT MARGINS PERIPHERAL MARGINS: DISTANCE OF INVASIVE MELANOMA FROM CLOSEST PERIPHERAL MARGIN: 18MM  DEEP MARGIN: UNINVOLVED BY INVANSIVE MELANOMA DISTANCE OF INVASIVE MELANOMA FROM MARGIN: 10MM MITOTIC RATE: 16/MM2

MICROSATELLITOSIS: NOT IDENTIFIED LYHMPH-VASCULAR INVASION: INDETERMINATE PERINEURAL INVASION: NOT IDENTIFIED TUMOR-INFILTRATING LYMPHOCYTES: NOT IDENTIFIED TUMOR REGRESSION: NOT IDENTIFIED GROTH PHASE: VERTICAL LYMPH NODES: N/A PATHOLIGIC STAGING (PTNM)PT4B,NX,MX

TUMOR CELLS SHOW IMMUNOREACTIVITY TO MELAN-A AND S-1010, WHILE ARE IMMUNEGATIVE TO AE1/AE3. THIS IMMUNOPROFILE SUPPORTS THE ABOVE DIAGNOIS

I think above underlined text is very important, however, I am not sure what "Not Identified" really means? Does this mean everything looked good?  Also is the deep margin being uninvolved important? seems to be to me...

I appreciate anyone with experience or experts can tell me from this report. My father is in a situation right now where medical care is not really available, and getting these reports correctly interpreted to the family is near impossible. We are working on getting his lymph nodes looked at. 

Thanks again

 

Matt

 

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