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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EricNJill's picture
Replies 14
Last reply 4/21/2011 - 10:17pm

Eric's Oncologist told him he doesn't have 30 days to wait for the washout period to get into another clinical trial because his cancer is spreading fast.  He said that Eric needs to start Yervoy immediately, but Eric's insurance does not cover the cost of the drug.  We were told we could appeal but Eric's Oncologist said they aren't having any luck with getting the insurance companies to cover Yervoy.  He has had other patients running into this problem.  Has anyone here had any luck with assitance?

JillNEric in OH

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adgesoph's picture
Replies 6
Last reply 4/21/2011 - 4:11pm

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?

 

Adrienne

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TEAMM4M is a marathon training program for runners committed to raising money for the MRF.

Want to run a full or half marathon?
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Know a runner who might be interested?
Learn more here or contact me at cedrington@melanoma.org.

Carolyn Edrington
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Melanoma Research Foundation

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TracyLee's picture
Replies 7
Last reply 4/21/2011 - 3:37am
Replies by: nicoli, Anonymous, Carol Taylor, TracyLee, Carmon in NM, Sharyn, Terra

Hello,

I have a scalp graft that was successful last May. Since then I've had 2 recurrences and 2 pinch graft surgeries. I'm now having a scalp resection to cover the bald spot, as I need radiation. I've also got nodes back in my neck, despite a neck dissection last June.

I'm so discouraged! For whatever reason, this surgery next Monday is bothering me more than any of the others, including the original graft which was no fun whatsoever. I'll have 2 surgeons on Monday: plastic surgeon working on my scalp, and my regular oncologist doing bumps under my scalp and the neck nodes.

Everything has spiraled down so quickly that I can barely breathe. I'm going today for an ultrasound guided fine needle biopsy of my neck (to confirm what they all suspect). I can't find much info about what to expect on the ultrasound, other than it will take 2 hours.

Has anyone done radiation after head grafts? What do I need to do to prepare myself? I work full time, and shudder at the time I'm going to miss from work once I start radiation.

I'm still Stage III, so I guess that is a ray of sunshine in a gloomy outlook.

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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lindas58's picture
Replies 4
Last reply 4/20/2011 - 8:17pm

My husband has been complaining of itching at the excision site & also says its sore...Should we be concerned about this? He was basically turned loose so don't know who to ask. Thanks Linda

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/20/2011 - 8:17pm

Hi all,

Quick question: I had a punch biopsy on my toe. It was moderately atypical with clear margins.

Had more re-excised via slightly bigger punch with no residual atypical nevus seen (which I was expecting)
Had stitch out yesterday after 4 weeks of stitches. It is a bit of a mess, due to it being on toe, one stitch popping out from day 1, etc.

I just noticed right in the middle, deep down, a spec of pigment (stitch? dried blood? pigment?) It basically looks black & dark
I can't imagine pigment since it hasn't even healed, so it's not like it grew back within hours!? Just wondering if anyone had thoughts. I tried to "grab" it with tweezers but it's deep and isn't moving.

Do you suggest I call and go back to derm?

Thanks

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Vermont_Donna's picture
Replies 8
Last reply 4/20/2011 - 7:36pm
Replies by: Vermont_Donna, Barb Kotti, Anonymous, Ranisa

Hi everyone,

There is an article on Good Housekeeping about a woman diagnosed with stage 3 and then stage 4 melanoma and her journey with treatments.

People may find it interesting; it seems to have covered some of the newer treatments...Ipi, PLX4032. She was treated was tremilimumab....guess I am not sure what that is.....but I will research that.

Enjoy!

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi, round two to start May 11

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lhaley's picture
Replies 14
Last reply 4/20/2011 - 6:41pm

I've been having stomach pains and had an ultra sound by a local Doctor.  It showed possible calcification of the gallbladder or stones that had adhered to the gallbladder. He set me up with a local surgeon. Meanwhile I sent a copy of the scans to my melanoma specialist to compare. It really irritated me that the local hospital said they had nothing to compare to and I had handed them my scans from 2 months ago.....   Anyway, the surgeon seemed wary to operate on  me because of my history and wanted to wait till my next PET.  Just got a call from my melanoma specialist that they agree that the ultrasound is not clear cut.  They are setting me up with a GI oncologist that is part of their team.   Here's to hoping that this is just a strange way to present gallstones!! 

Linda

Stage IV since 06

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TracyLee's picture
Replies 1
Last reply 4/20/2011 - 11:18am
Replies by: Carol Taylor

Hi y'all,

Hoping and praying no one else faces a scalp re-section. That being said, I wanted to post that my surgery took 6 hours, 2 surgeons (plastic and oncologist), 2 anesthesiologists and I had an AWESOME outcome.

I insisted on some sort of anti-nausea drug. There's nothing worse than puking for days after surgery! My plastic surgeon prescribed Emends 40 mg, 3-4 hours pre-op with just a sip of water. I also had Compazine (suppository) and will ask for the same 2 again if I need any further surgeries.

NO nausea after 6 hours of general anesthesia! Plastic surgeon injected pain meds directly into my 3 incisions, and literally, I was only "uncomfortable", not in pain, from the drains. This was my most extensive surgery and the BEST by far. I'm back at work full time a week later (I still have 40 staples in my head).

Please be your own advocate and don't settle for "everyone gets sick after anesthesia". I now know better and will expect nothing less!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Leigh's picture
Replies 43
Last reply 4/19/2011 - 9:28am

Hi all,

I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

My background is that I was diagnosed early December with a 0.83mm, non ulcerated, no mitoses, Clarkes IV melanoma, no lymphvasc invasion, on my foot, WLE performed and SLNB was negative.  About 2 weeks after the operation I started feeling discomfort in my leg which seemed consistent with lymphatic obstruction, achy feeling with upper groin discomfort.  My leg was 3cm larger than the other and I did have an infection in the wound site so that was that.

The upper groin ache has continued though with no enlargement on measurements and ache went to deeper in my pelvis on that side (not terrible just obvious discomfort).  The surgeon felt this was related to surgery and didn't advise tests.

I sought a second opinion about the tests and we went ahead with a CT on Friday.  I have just got the results in the mail today (Sunday) as hadn't checked the letter box.  I am in a panic about what these mean - my GP says it could just be a red herring but I am not sure as it is the lymph nodes that are changed.

Please if anybody has had this happen to them and it has all turned out fine write back!  The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"  The nodes are 11m, 10mm and otherwise less than 10mm.  (Incidentally they found "most likely a haemangioma" in my liver).   Could this be a red herring, could it be nothing.  It seems unbelievable as the sentinel lymph node was negative and the surgeon was very confident that he got the correct one.

I have an almost 3 year old and 6 month old baby and I cant bear to think about what this might mean for our family.

 

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sharmon's picture
Replies 2
Last reply 4/18/2011 - 8:23pm

Hi, everyone, 

Brent is my husband and we are sitting at MD anderson as I write.  He has been on the GSK MEK trial for 14 months and progressed last scan.  Now he doctors want to place him on the MEK chemo combination with Alimta which is approved for lung cancer.  Or we can wait for the MEK /PI3k trial to open sometime in the future here at MDA.  Today after making a few calls to GSK  I found that a Nashville location has the trial we want MEK / PI3K.  Not sure if he can get in.   I don't know what to do or think.  He has had chemo agents in the past and they really knock the Hell out of him physically. 

Does anyone have any input???

Thanks for taking the time to read this.

Sharmon

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kbc123's picture
Replies 8
Last reply 4/18/2011 - 8:23pm

Okay the questions begin again....I have a lump on the tip of my elbow.  Not large, the size of a small pea, not too painful, just uncomfortable.  I went for xray today becase I did fall down the steps about four weeks ago.  I was praying that i have a bone chip or something.  The doctor says she thinks its a lymph node.  Ugh.  Now what?  I never heard of a lymph node on the tip of the elbow...

1)  She was just a medi-merge type doctor, maybe she knows nothing?

2) I called my doctor from the car and he will get back to me sometime soon.  I am still waiting for a phone call from April 7....(my melanoma guru --- not to comfortable with that office anymore but that is another story..I went to NY for this?) Time to venture to a new state for a new specialist...

3) The lump is on my right elbow.  My SNB was the left armpit.

4) Could we all just stop and pray that it is probably a calcium deposit or something? 

Just when I thought I was getting a little bit better with dealing, I am punched in the face with the fear of God.  Any info would be great, y'all!!

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Carmon in NM's picture
Replies 4
Last reply 4/18/2011 - 6:47pm

I'm finally having surgery at UNM in Albuquerque tomorrow to remove my right adrenal gland and what is left of the tumor tissue after completing the clinical drug trial. Hopefully, with a little Grace this will be the end of treatment for a while and after six months of chemo I can enjoy the summer! Even though this will be the most serious surgery I've ever had, I'm looking forward to finally getting it done. They will be opening me down my mid-line so I have a six week recovery of doing NOTHING! My husband figures they will have to duct tape me to my recliner to keep me quiet. ;)

I had a pre-surgery brain MRI and full body PET and CT scans last Wednesday and I'll get the results today when I meet with my onc and surgeon. Hopefully it will remain good news with nothing new and that darned adrenal tumor too tiny to even show now! I'll be thinking of you all while I'm in the hospital and hoping everyone is well. I'll post when I can!

Carmon in NM - Stage 3b Sep 2008, Stage IV June 2010 with brain and adrenal mets.

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Sunny Sea's picture
Replies 25
Last reply 4/18/2011 - 6:12pm

Hi Everyone. 

I'm so glad to have found this site.  This is so overwhelming.....the people around me who seem to actually "get" how serious this is are few and far between.  Most telling me "dont worry" ....yeah right.   The complete loss of control over my future .....I mean, from now on, this *thing* is a central component of my existence.   I can never "not worry" that it will come back.....someplace.   And now, every little ache or pain i have is the cancer spreading.  I feel like i'm losing my mind.  And I'm kicking myself for pulling a wait-and-see approach when i noticed the thing changing about a year ago.  All i'd ever known about skin cancer was basal cell or squamous cell.....(cut it off, it's gone) so i didnt feel any urgency about getting it checked.  The fact that skin cancer can kill....I was so clueless.    ---and i'm a freaking RN, you'd think i might have known better. 

I know it all comes down to reports and results.  This is my biopsy report.  I had one mole taken from my back that my dermatologist found (it was atypical) and then the one on my wrist which was melanoma. 

DIAGNOSIS:
     A.  Skin, right upper back, punch biopsy:
            - COMPOUND LENTIGINOUS MALANOCYTIC NEVUS WITH ARCHITECTURAL DISORDER AND MILD MELANOCYTIC ATYPIA
     B.  Skin, right forearm, excision:
            - MALIGNANT MELANOMA, SPINDLE CELL TYPE.
            - CLARK'S LEVEL:  IV
            - DEPTH OF INVASION:  1.0 MM
            - NO ULCERATION
            - NO REGRESSION
            - NO PERINEURAL OR ANGIOLYMPHATIC SPACE INVASION
            - THE MARGINS ARE CLEAR OF BOTH MELANOMA IN SITU AND INVASIVE MELANOMA
COMMENT:
     Dr. Buckley, Dr. Frazier has also reviewed specimen B and concurs with the interpretation of spindle cell melanoma.
______________________________________________________________________________________________________________
 
CLINICAL INFORMATION:
41 y/o caucasian female
A) irregularly shaped dark brown macule.  R/O atypia
B) irregularly shaped multiclored macule with dark brown center.  Nevus. R/O melanoma in situ.
 
GROSS DESCRIPTION:
    A.    Labeld with the patient name and "right upper back".  A pigmented skin punch measuring 0.8 cm in diameter and 0.5 cm in length.  Bisected.
    B.    Labeled with the patient name and "right forearm".  A skin ellpse 1.4 x 1.0 x 0.4 cm  No orienting marks are identified.  Inked, breadloafed, and submitted in one cassette. 
 
MICROSCOPIC DESCRIPTION:
    A.    An asymmetric lentiginous proliferation of melanocytes in variably sized nests as well as individually at the tips and alongside rete pegs with extension into the dermis, highlighted by immunohistochemical stains for pan-melanocyte antigens, controls appropriate.  Broad zones of confluent melanocyte proliferation along the junction extending beyond three rete ridges in width or significant upward pagetoid migration are not observed.  There is a variable host fibroinflammatory reaction including melanophages.   Mild degrees of melanocytic atypia are identified.  The biopsy margins appear clear in the plane of section. 
   B.     Sections show broad, irregularly-nested and solitary atypical junctional melanocytes overlying sun-damaged skin.  Dermal cells are spindled with superficial mitotic figures identified.  There is no perineural or angiolymphatic space invasion identified.  The pan melanocytic marker highlights the spindled dermal melanocytes within the reticular dermis measuring to 1.0 millimeter.  There is no ulceration or regression.  Tumor infiltrating lymphocytes is absent.  A Ki-67 proliferating marker shows low proliferative activity of the dermal melanocytes.  An HMB-45 immunoperoxidase stain shows weak positive staining of the dermal spindled cells.  A pHH3 mitotic stain highlights a rare dermal mitosis.   The margins are clear of both melanoma in situ and invasive melanoma. 
 

So, I had the initial biopsy in mid-February, they got the results a week later and referred me to a surgical oncologist.  The soonest appointment was March 1.  He in turn set me up for a WE and SNB which will be done this Thursday (3/31).  So, about 2 months have gone by since this thing was removed.....could it have been spreading or causing more problems while i'm sitting here WAITING...(the waiting is horrible).  

If the WE removes all the tissue from around the site, HOW can the thing come back in the same area??   Can the still leave "stray" cells behind even when they're removing so much surrounding skin?   If it does come back, will it show up on the surface of the skin or just pop up in some random place in my body?   Could it not already BE somewhere else?  Is there a reason why they wouldnt have done a PET scan yet?  Wouldnt that be a logical step to take while we're waiting for the surgery date?   Ok, as you can see....i'm overthinking this and driving myself nuts.   I try to remember to take one day, one moment, one step at a time.   That's much easier said than done.  

Thank God for all of you and the courage that you have to be on here, helping us "newbies" while continuing your own fight.   I'm sure the "freak-out" factor must get old after a while but i know that if anyone can understand it, it is those of you who have been here before.   Any help or guidance you can give would be appreciated.  

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Janner's picture
Replies 17
Last reply 4/18/2011 - 5:53pm

In April 1992, I was diagnosed with a .58mm lesion.  (Stage IB under today's staging system).  Pre-internet days and no books on melanoma at my library.  It was incredibly difficult to find anything in print, and what was written was incredibly negative.  Mostly geared toward higher stages and low survival rates.  The internet and sites like this have become an incredible tool if you don't let them freak you out.  19 years later (and with 2 more primaries in 2000 and 2001), I'm still stage IB.

This place can be scary for the newly diagnosed - especially those who are early stage.  Most stage 0 or 1's move on and don't stay to post here as their anxiety wanes.  So I'm posting as one of those long time stage I people who is still stage I after MANY years.  Heck, it's hard to remember my life without melanoma.

Best wishes to all,

Janner

 

1992 - ..58mm, Clark Level II, 1 mitosis

2000 - in situ

2001 - .88mm, Clark Level III, 1 mitosis

Tested positive for melanoma genetic defect, CDKN2A

http://www.MelanomaResources.info

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