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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aliciajo's picture
Replies 1
Last reply 4/24/2013 - 1:06pm
Replies by: MeNDave

Stage IV melanoma. Zelboraf didn't work. IL2 almost killed him. Now we are going to try Avastin and Temodar together...what to except. Please Help??

one day at a time...

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Just completed around three of BioChemo after receiving good news of no active decease.  So, now the talk is complete round 4 do another PET and if things are the same or better consider removing the tumor on my neck, which appears to be free floating and not attached.  I am with Kaiser and been treated at Riverside Kaiser.  I have had three other tumors removed from different locations, breast, lung and buttocks, but know the neck.   Here is my question does anyone know a doctor within Kaiser who is highly recommended.  I have a couple of names for the South Bay but preparing through research.  I must say I have no complaints regarding the ABC program at Kaiser Riverside.  They have so good to me.

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My husband has been on Zelboraf and brain tumors continue to shrink! He still feels great and is working part time at Lowes to give him something to do. Now for the bad news..... he has had a lump for a month in his neck that is melanoma, but doctors are confident it is localized and with surgery on Mon, he will be ok! So, good news/bad news & weird that Zelboraf still working on brain mets, but this popped up. Oh well, that's our new journey with melanoma. We still keep that Positive Mind Attitude and keep on living!! :-)

Best wishes to you all! Kelly

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swissie's picture
Replies 0

Hello everyone,

I haven't posted in a long time.
Short history, Stage IIIb since July 2009, started double blind trial with 10 mg ipi / placebo in September 2010.
Ended this trial on own request after 8th infusion due to side effects (fatigue and increase of spleen).

All my scans have been clean so far.
Half a year ago, I had a swollen lymph node in my right groin (the original melanoma was on my left knee, the met in my left groin).
Had an FNA which came out as a reactive lymph node.

Last week I had a second biopsy (increase from 2.2 to 3.5 cm), which is declared a reactive lymph node again.
Off course this is great news.

However, there is nothing mentioned about any melanoma marker testing.

Can one say a lymph node is reactive, just based on the kappa-lambda ration of 1.1 :1 and the existance of 66% CD3 positiveT-cells, 27%  CD19 positive B-cells  and the lack of CD5, CD10 and CD23?

It would be great if anyone can explain this (response from my doctor: "I guess if the cell line is clear (all lymphocytic cells) there is no need for melanoma markers").

 

Thanks for your help,
Swissie

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Brendan's picture
Replies 5
Last reply 4/23/2013 - 12:11pm
Replies by: kylez, Brendan, jag

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Anonymous's picture
Replies 20
Last reply 4/23/2013 - 11:43am
Replies by: dani66, NYKaren, Thandster, Carole K, kylez, Anonymous, POW, Janner, jag, JakeinNY

I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients. Thank you. 

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Kim K's picture
Replies 1
Last reply 4/23/2013 - 11:18am
Replies by: dian in spokane

Or was it just her spine that was clean.  How is her lung met?  If she is really NED from the IL-2 we need to shout out loud and congratulate her.  Her odds of living another 5 years just shot up if that is the case!  Plenty of time to get that hand of hers back to playing dueling banjos without skipping a beat.

Hang in there Dian!  We are all pulling for you.  You are one tough cookie!

Aloha from Hawaii,

Kim K

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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anon's picture
Replies 12
Last reply 4/22/2013 - 7:37pm
Replies by: parkmk80, anon, Anonymous, Janner

how many moles/atypical moles do people normally have, when they are diagnosed with atypical mole syndrome? i am reading mixed info online. thx!

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Replies by: parkmk80, Anonymous, Tina D, Janner

I had a dysplastic nevus (mild) removed (shave) and there is now this bubble that looks a whole lot like an amelanotic melanoma or a morpheafor BCC.  I keep asking my derm if it's suspicious and he says it's an overgrown scar.  It itches all the time and I continue to ask him about it because it keeps itching and looks awful compared to the other biopsies I had.  I have had atleast 20 and my question is:  Is it possible to grow a skin cancer from an atypical shave  biopsy.  Should I get a 2nd opinion?

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Brendan's picture
Replies 0

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Crystal0702's picture
Replies 3
Last reply 4/22/2013 - 1:30pm
Replies by: Crystal0702, Janner

Hello!  I was just diagnosed with Melanoma in situ based on a small sample that my PCP took. I have a Surgery Consult and Oncology appointment next week. My biopsy report inidcated that the Melanoma Cells covered the full tissue sample, which is why I need further surgery, can this diagnosis change? Is there a chance that the cells go deeper than the sample showed?

Also, Ive seen mix responses - but is this actually cancerous?

Thanks in advance for anyones opinion/advice/experience! 

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Becky C.'s picture
Replies 9
Last reply 4/21/2013 - 7:24pm

Hi , everyone. I just returned from MD Anderson and wanted to share my experience. I met with Dr. Wen-Jen Hu, and liked her very much. It was such a good feeling to talk to someone so knowledgeable about melanoma. We are looking at a clinical trial starting in May for Anti-Pd 1, but I have to have a brain MRI first.My brain mets have to be stable.They were stable on my last petscan so we hope they still are.  Is there anyone out there that has had this treatment? I would really like to know your experience. The research i have read about it sounds very positive.

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vivian's picture
Replies 4
Last reply 4/21/2013 - 3:14pm
Replies by: vivian, rbruce, Kim K, kylez

Hi All,

I had a VATS wedge resection of a lung met (lower left lobe) back in November 2012.   The surgery went well and I have been NED since - Yay!  However, in the last couple of months I have had continuing moderate pain which seems to be located underneath the front ribs in the area of the stomach.  Nothing shows up on scans, and there is nothing palpable.  The oncologist says this is likely  referred pain from the VATS.  Obviously nerves and muscles were disturbed, so perhaps that is true, but it just doesn't feel nerve or muscle pain, more "organic".  The whole left side of my upper body is weird anyway because of the original wide excision, the lymph node dissection, an in-transit excision, and finally the thoracic surgery.   I was pretty convinced that the scans were going to be bad, because of the pain, but fortunately I was wrong.  Do any of you thoracic surgery veterans have experience with referred pain?   Would you just wait it out and see if it goes away or lobby for further testing?  Thanks for any help/advice!

Lear 

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MRI shows 6 more spots. The original 4mm spot was treated with radiation and showed raditation had done its job. The PET scan showed very little to no results so far on the original tumors. The PET scan showed more tumors in several areas under the skin which we noticed. Did not show any addtional on organs. The onc and raditation specialist meet and decided to treat the brain with WBR. Concerns were that before IPI might help the brain that she would get effects from the spots growing in the brain area. The WBR is scedule to starat the 22nd for 10 days. Not wanting to stop a systemic treatment they are going to start a small dose of Temodar during the WBR. The onc states next step is the anti PD-1 once completed with WBR. The doctors treating my wife at MOffit are Dr. Kudchadkar and Dr. Rao. She still is much more tired and/or fatigued during the day. She is also having sever gas which the doctor says is probably a side effect of the IPI. Any thoughts or concerns with the WBR and Temodar? Once you feel comfortable with your team of doctors, I guess you must always trust their plans of attack. 

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NYKaren's picture
Replies 1
Last reply 4/21/2013 - 1:44pm
Replies by: aldakota22

Hey Al,
We're missing you 'round here.
Hope you're okay
Karen

Don't Stop Believing

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