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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gtown's picture
Replies 4
Last reply 5/23/2011 - 9:56pm

Hey what's up.

I'm still awaiting biopsy results from tumor removal ( 1.9 mm approx, nodular, non-ulcerated 7 mm mitotic rate) and SNL from armpit area. The doctors at Penn hospital said they wouldn't advise interferon if it hasn't progressed to the lymph nodes. They really wouldn't discuss any therapy until the results come back, which I understand. I took interferon or pegintron for 6 months to cure Hep C and was able to work construction as well as run about 15 miles a week. I had to inject myself once a week. I want to know if the interfveron treatment  for melanoma is similiar to this? Ihave read about high dose interferon where they give you an IV for 5 days straight and then you self dose, but I can't find any info other than the basics so I decided to come to the experts to get the lowdown on this therapy. Any and all info concerning this would be greatly appreciated.

                                                                                                        Thanks

                                                                                                          Gtown    

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annabanna's picture
Replies 6
Last reply 6/1/2011 - 7:11am

went to dermatologist and got pathology report showed malignant melanoma

brealow depth 1.05mm

clarks level IV

regression absent

luceration absent

mitoses less tha 1/mm*2

dermatologist said that will have to wait to see surgeron to find out more and he does not think waiting to june 2nd is a problem the mole is on my back

tina

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Charlotte C's picture
Replies 3
Last reply 5/22/2011 - 6:36pm

I could not log in as Char C so I had to put my full name. For those of you who remember me, I was wife of Bill C.
I haven't logged in for a long while....

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LisaMH's picture
Replies 8
Last reply 10/9/2014 - 9:43am
Replies by: DMU, FormerCaregiver, Anonymous, DonW, slpinion, Carol Taylor

Hi all.  Newbie here.  I got the call last week that my biopsy showed melanoma.  The details of my pathology report:

0.6 mm depth

non-ulcerated

Clark's Level II

1 mitosis

Non-brisk lymphocytic inflammation

 

I have an appointment with a general surgeon tomorrow morning.  The pathology report suggests excising with at *least* 1 cm margins, and from some of the research I've done, it looks like 2 cm might be best due to the mitosis.  I plan to ask the surgeon about that, but is there anything else I should question?

I have no idea what to expect at tomorrow's appointment and I'm pretty nervous.

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julieannveronica's picture
Replies 4
Last reply 5/24/2011 - 12:08am

My 73 year old mom had a craniotomy in February.  It was stage 4 melanoma.  She had a mole removed from her neck in 2003.  after 10 full cranium radiations and 3 cyber knife shots to a small spot on her left lung - her PET and MRI came back free and clear on Wednesday.  She was very flat when she heard the news.  The next day she seemed happier and told me it was starting to sink in.  On Friday she seemed more disoriented and sad/flat.  Confused.  she is tired and not eating much.  Someone that had had the same operation 4 or more times said she needs some Ativan.  Any feedback?  she is on Leukine - 14 days on and 14 off.  no reactions to the leukine.  What do you think?  thanks

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My 73 year old mom had a craniotomy in February.  It was stage 4 melanoma.  She had a mole removed from her neck in 2003.  after 10 full cranium radiations and 3 cyber knife shots to a small spot on her left lung - her PET and MRI came back free and clear on Wednesday.  She was very flat when she heard the news.  The next day she seemed happier and told me it was starting to sink in.  On Friday she seemed more disoriented and sad/flat.  Confused.  she is tired and not eating much.  Someone that had had the same operation 4 or more times said she needs some Ativan.  Any feedback?  she is on Leukine - 14 days on and 14 off.  no reactions to the leukine.  What do you think?  thanks

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Rendergirl's picture
Replies 13
Last reply 5/23/2011 - 2:43pm

I found the Bristol Myers site that says Yervoy is now available as a prescription. How come my oncologist didn't tell me that? I don't hear anyone else talking about it either. The only way to get it seems to be to enroll in a trial where you only have 50-50 chance of getting the drug. Has anyone gotten it with a prescription?

Also, I looked up the side effects and they seem pretty serious. Anyone had Yervoy and can tell me what you side effects were like?

 

Becca

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TracyLee's picture
Replies 4
Last reply 5/22/2011 - 6:39pm
Replies by: dian in spokane, nicoli, Anonymous, Carol Taylor

Hi y'all,

Definitely liking the positive posse support from my last thread!

I am able to have Ipi here locally, I'm probably the FIRST one they've done. So, I expect I will be very well monitored! My local Dr. Peri will closely coordinate with Dr. Sharfman at Johns Hopkins.

I'm so happy not to have to haul across the Bay Bridge in summer beach traffic. God is providing well for me. I go in on Monday, but I am pretty sure that is just pre-planning to get ready to begin ipi in the next week or so.

Thanks to each of you in (or just watching) the posse/ninjas/warriors group! Definitely the best thing I have going is having y'all to vent to and bounce questions off of you!

Praying that everyone on this board has good news in the coming days.

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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amyb's_sister's picture
Replies 31
Last reply 6/1/2011 - 1:08pm

Amy's battle with melanoma ended today, 05/21/2011. A long and courageous fight! A True Warrior! We know that Amy touched many people with her determination and spirit to overcome this disease and you touched her. For that we say Thank You! Please remember Dennis, Cayla, and Dylan as they begin a new battle. Your thoughts and prayers are part of what armed Amy in her fight. Remember her Faith, Courage, and Relentless Determination to learn and reach out to others in their battles as well. We truly thank you all!

Amy's Mom, Dad, and Sisters 

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sharmon's picture
Replies 10
Last reply 5/22/2011 - 7:14pm
Replies by: CatLvrBBW, boot2aboot, MichaelFL, SharonK, Cate, Bonnie Lea, Anonymous

I just got word the Amy is Chillin' with Jesus, no longer hurting,

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Part of my husband Don's new pain regimen is OxyContin for long term pain control and Oxycodone for breakthrough pain. It seems, however, that with every new dose of the OxyContin, he develops a low grade fever (99-100) that has to be controlled with Tylenol.

Has anyone else experienced this side effect, and if so, did it go away as you adjusted to the medicine?

He is currently only being treated for pain; we are waiting for BRAF test result. (I did call doctor on call and they weren't worried about it as a one time occurence because the fever is low and he's not on any treatment that would affect his white blood counts yet, but this seems to be a pattern.)

Thanks!

Michelle, wife to Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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KRob's picture
Replies 1
Last reply 5/22/2011 - 2:21pm
Replies by: boot2aboot

Fellow Melanoma Community Members:

As you may have already heard from MRF, a small group of us from the Midwest region are heading to D.C. to lobby our representatives to enact stricter legislation regarding tanning bed usage. Two of us from Ohio will be speaking to our state's congressmen: Reps. Pat Tiberi, Steve Austria, and Sen. Sherrod Brown. 

I would love to share not only my voice but some of yours as well. If you would like to be part of this effort, please send me a brief summary of your case history (no more than half a page) and a personal message (one paragraph max) to our representatives in Washington that I can share to help persuade them to act on this most important of legislative actions.

(my email address is in my profile - please send all testimonies to that!)

Thanks!

K.Roberts

 

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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nickmac56's picture
Replies 12
Last reply 5/23/2011 - 10:11am

As reported before, my wife, Stage 4 melanoma (lung and skin mets, IPI non-responder), had 2 brain tumors, suffered a stroke from one of the tumors bleeding, had brain surgery to remove the tumors, and is now just getting ready for Cyberknife treatment of the remaining microscopic tumor cells and any other tumors which have popped up in the interim. She had her Cyberknife planning scans on Thursday and we should have the plan and start treatment by next Thursday. 

I've been doing a lot of research on treatment options and where we can go once local control has been established in the brain. Most of the clinical trials out there require the patient to be free of brain mets for at least 30 days (some, 30 days from last steroid use) and NIH is 90 days. 

The part that is confusing to me is the difference between treatment of the brain mets versus the systemic melanoma. It appears to me that once melanoma has crossed the blood brain barrier - you are really dealing with two separate "diseases". One is melanoma of the body, two is melanoma of the brain. If, in our case, after successful treatment with the Cyberknife, she goes on to the next step of Interleukin-2 (our oncologist's recommendation) and she is one of the fortunate responders and the disease is eliminated in her body (NED) we still have to deal with the melanoma of the brain because the Interleukin-2 does nothing to address that. Any immunological treatments only address melanoma in the body.

To address melanoma of the brain, you continue to use Cyberknife as needed to control local tumor recurrence or in other brain locations, but then you need to pursue some of the experimental chemotherapy regimes which appear to cross the blood brain barrier to wipe it out in the brain. Whole brain radiation does not appear to offer much in the way of success at wiping out the brain metastases, and comes at a high cost in terms of side effects.

Am I surmising this correctly? Regrettably my wife has suffered some cognitive impairment as a result of the stroke and brain surgery so even though she is technically competent to make her own decisions, I need to provide her as much perspective as possible. Her belief right now is that once the Cyberknife treatment is completed and successful, and then she has the Interleukin-2 and it works, she will then be free of the disease (believing there is  link between the body and brain melanoma). My take is that if the IL-2 is successful, that is fantastic, but we have to separately address the brain melanoma because it has in fact become it's own separate disease because it's in a "colony" different than the body and what works in the body doesn't affect the brain.

Sorry if this is a confusing question, but would appreciate hearing from those who know more than I about this issue.  thanks, 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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boot2aboot's picture
Replies 6
Last reply 5/25/2011 - 11:07am

i got my pet scans back...the 'hot spots' were arthritis, not mel...after doctor shopping and lot's of reading and interviewing and indecisiveness...i am going to do bio-chemotherapy for my stage 3c diagnosis...if my insurance won't go for it...will try to get into the pittsburg study (ipi vs interferon)...i start june 2...wish me luck

boots

don't back up, don't back down

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eaca's picture
Replies 8
Last reply 5/22/2011 - 11:24pm
Replies by: eaca, gtown, KatyWI, washoegal, Ranisa

I promised an update for those interested on my first doctor consultation today.  Here are the details of the pathology report on the mole that was removed - I don't even pretend to understand everything, but I know there are very knowledgeable people here who will!

"Melanoma, invasive, superficial spreading type

Clark Level, III

Breslow Thickness, 3.20 mm

Radial (non-tumorigenic) growth phase, present

Vertical (tumorigenic) growth phase, present

Mitotic Figures/mm2, 25

Ulceration, Present (1.5mm)

Regression, not identified

Vascular Invasion, not ruled out

Perineural Invasion, not identified

Microscopic Satellitosis, not identified

Tumor-Infiltrating Lymphocytes, Non Brisk

Associated Melanocytic Nevus, Present (Intradermal Nevus)

Predominant Cytology, Epithelioid

Surgical Margins: Melanoma in situ is present within 1.0mm of peripheral tissue edges

Comment:  Sections show invasive melanoma, polypoid and ulcerated. There is a small aggregate of nevoid melanocytic cells in the base of the tumor, interpreted as an associated intradermal nevus.

Additional material will be requested to perform an immunohistochemical study for D2-40 to rule out vascular invasion. An addendum will follow."

I felt the doctor and her assistant's were quite good at explaining things.  After meeting with them I had a Lymphoscintigraphy done, blood collected, EKG and chest Xray done.   The technician at the lymphoscintigraphy said that the site was draining to my left axilla.  I am supposed to get a call on Monday with the results and to determine whether the doctor wants an ultrasound done before the surgery.

I am scheduled to have the wide excision of the site along with the sentinal node biopsy done on June 8 (earliest available date).

All of this is quite scary.  The melanoma is deeper and more active than I had hoped for.  Still, the doctor said there was only a 1 in 4 chance that any melanoma would be found in the lymph nodes, so I'll hope for a good outcome after the surgery.  The hardest part will be the waiting to find out.

I had been planning to spend almost the whole summer in France (where I moved from last year). Now I have to delay my departure, but the doctor said that she thinks I can travel after the surgery and while waiting for the results.  She wouldn't do a second surgery if needed until 1 month after the first anyway.  Do you all think it's realistic that I could travel after the first surgery?

Thanks for your interest in reading these sordid details!

Elisa
 

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