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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frankMill's picture
Replies 11
Last reply 9/12/2012 - 8:32pm

I was diagnosed on 8-17 with Stage IV melanoma in my chest, had surgery on 8-31 and am now NED.  So far, I've been treated at Baptist Hospital in Jacksonville, FL but I consulted with Dr. Jeffrey Weber at Moffit last Friday.   Both Baptist and Weber tell me that the chance of recurrence is 75-80% and that I should be on some adjuvant therapy. 

I am very impressed with Moffitt.  They have three trials, anti-PD1, Mage vaccine, and Yervoy.   Baptist has one trial that is randomized between Yervoy and Alpha Interferon 2b.   Dr. Weber strongly suggested the PD1 trial based upon my profile but I may not qualify (waiting on the results of the HLA-2 test).  The onccologist at Baptist suggested that I either get on their trial or start "Peg Alpha Interferon".  

This is a hard decision and it feels like I'm rolling the dice with my life. My gut is telling to roll the dice with PD1.  Whatever choice I make I need to feel good enough to be able to work on my computer from a home office.

Does anybody have any advice or personal experience they can share to help me with my decision?

Thanks,

Frank 

 

 

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mama1960's picture
Replies 3
Last reply 9/12/2012 - 8:19pm

Will be going to MD Anderson for an appointment on 9/25. Was told to plan on staying several days and leave travel plans flexible. Hope they go ahead and do the surgery. I have not been on a vacation in years because I did'nt feel like I could afford to fly. Hope one trip does it.

It is what it is.

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Community Health Resources Center is presenting the final lecture in a 3-part series on melanoma, details are as follows:

Date, time: Wednesday September 26th, 5 - 6:30 pm

Presented by: David Minor, MD . This lecture will address the advanced stages of melanoma and treatments that are available during stages III and IV. The most current research will be reviewed. Refreshments provided.

Location: 2333 Buchanan St., Level A Conference Room, San Francisco, Ca 94115

Cost: Free! Any donation contribution welcome, $10 suggested

Registration required: Call 415-923-3155, or email cpmcchrc@sutterhealth.org

We look forward to seeing you there!

Community Health Resource Center... the next step to better health

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natasha's picture
Replies 5
Last reply 9/12/2012 - 2:51pm
Replies by: natasha, bron, lhaley

      I am very sorry for this question ,but - is it o'k to have freckles on genitalia?

I am very embarassed to ask ,but I did full body check (as I do every month0 AND CHECKED MY GENITALIA AS WELL.

I have couple of freckles in where.

I do not know is it new ones or not ,because I never checked that area.

My Doc is male. My next appointment is in October.

Can I ask male Doc to have a look?

I am sooo embarassed......

Please , give advice

Thank you

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DebbieH's picture
Replies 10
Last reply 9/12/2012 - 1:16pm

I'm posting this to maybe give some hope to those who are recently diagnosed. 

11+ years ago I found that the tiny stage 1 "lucky to have caught it so early" melanoma had returned to my lymphnodes and I was now stage 3C.  I wasn't hearing much hope from my doctors or where I went for a second opinion.  They were wheeling me into surgery at Univ. of Michigan right after the second tower was falling in NYC so I missed most of what happened that day.  When I woke up I was told I had 3 positive nodes and one had matted and had extracapsular extensions going into a muscle in my back so that was also removed.  My surgeon said he just kept going until he didn't see any more black.  I wanted to do a clinical trial but a brain mri showed "something" there so I didn't qualify and so I did interferon and got through 9 months before I had to quit.  U of M won't do scans (at least not then, not sure if that changed) after stage 3 unless you have symptoms so I had no scanxiety and I think it was easier for me to get on with my life once the side effects of the interferon were gone.  By the way, while it was no picnic, I found it doable and I'm glad I did. 

In the past 11 years I've had 4 more grandchildren, acquired two more by our daughter's marriage, our daughter got married and is very happy and life is very good. 11 years ago I would never have imagined this.  There are plenty more like me on this bulletin board and if you were recently diagnoised, NEVER FORGET THIS.  I don't know what I would have done without this place and I thank the Pattersons for having the wisdom and compassion to begin this bulletin board in their sister's memory.  Never give up, never think of yourself as the number they all drill into us with their statistics.  Good luck to us all.

DebbieH, stage IIIC, NED 11 years today after interferon and no scans 

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frankMill's picture
Replies 0

"Forever, physical humans are saying, "give me the truth, give me the truth." And we say, there are all kinds of truths. Choose the truths that serve you. Now, there are a lot of people that would feel great discomfort with that. But the thing that we want you to hear about it is: there is a truth of cancer, and there is a truth of wellness. Which truth serves you? You can activate either of them within you, and make it your truth. Truths are created; they aren't static. They aren't conditions that exist that then it is your obligation to identify and catalog. You are the creator of your truths—and what you are living is your truth."

--- Abraham Hicks Hicks Hicke

 

I wish everyone out there the truths of wellness, hope, and courage.

Frank

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Replies by: awillett1991, Tina D, Anonymous

A couple weeks ago, I was just geting increasingly sick with Z side effects and last wk, my Oncologist gave me a one week vacation. I started this vacation last Wed, and by Fri was feeling like I was coming out from under he cloud :)  . Fri night brought sudden onset of sever epigastric and RUQ abdominal pain. Endured this for next few days and went to family Dr on Tuesday. Probably gallbladder & sent me to ER. They concurred, and ran labs and ordered CT scan. After a bit, the very kind ER Dr came in and said. well, your labs are all fine.. ummm.. and your pregnancy test was posiive. Bwahaha. No question abt me being preggo, and hubby and I chuckled.Due to treatments, I went into menopause several years ago. But they didnt want to do CT scan with this pos result. We all researched while in ER to see if Z can/or has caused this particular erronious lab reading. Found nothing. Went for ultrasoung next day and had to have pelvic u/s to rule out pregnancy. U/S showed lg gallstone in mouth of gb and def not pregnant. Had gb out yeserday. Wondering if the increasing symptoms I was having the last 2 wks on Z (( esp fever, chills,nausea and vomiting) were actually from gallstone?? Recovering nicely and was granted 1 more week off Z while I  recover.

What some people wont do for a Z vacation, haha! SSeriously, though, I am thankful for the timing of it all.

Has ANYONE heard of Z causing a false positive pregnancy reading in labs? I wonder if it affects hormone levels somehow? If so, his seems like it could be problematic, esp for someone, for example, who may also have history of hormone positive breast cancer. I will contact the Z hotline next week, or ask my onc how to get it reported.

In the meantime .. I had my first "normal person" problem and surgery in 10 years!! It was so fun to have the Dr call and announce.." well, you just have a normal problem, here" . Thankful for that!!

Any thoughts or similar experiences?

Tina D

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Karin L's picture
Replies 10
Last reply 9/12/2012 - 12:31am

I thought I was doing great until the 6th day of taking Zelboraf.  I was taking 4 pills twice a day.  Is this the normal dosage?  Started with fever of 102+ which I have actually been battling up and down for 3 -4 days now.  Also, I have a chicken pox type rash all over my head, ears, neck, back, arms, and belly.  My eyes became really droopy and bloodshot which the nurse said was totally from the Z.  Script for prednisone for the eyes.  Does all this sound like what others have experienced as side affects?  How do you handle it day after day?  I cannot imagine having  this chicken pox itchy rash  every day.  They did take me off the Z for the weekend and we will reevaluate on Monday.  Nothing has changed though *sigh*. 

BTW, I haven't updated lately and some requested I keep them posted.  Been a rough last couple of months.  Mel went into the lower L5 area of the spine and is pressing on the sciatic nerve in my right leg.  Also has a lesion on the sternum.  Radiated both areas and it didn't do much.  Pain became so severe I was hospitalized to get it under control.  I have an amazing pain Dr. who just did not stop until we checked every avenue of treatment to help the pain.  (I was at a different hosp. than my onc's.)  Very close to permanent paralysis after the MRI'S and CT's.  Unfortunately, where the mel is makes it too risky to try most treatments.  So, we went off the ipi and on the Zelboraf since time was not on my side.  The pain is under control and 2wks ago I could barely walk....now I am doing great walking with assistance (walker or cane). 

 

Karin

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2012 - 10:54pm

My husband (age 31) has Stage 3C Melanoma.  (Clark Level IV, 1,4mm, no ulceration, 2 positive lymph nodes extremely large in size that were matted together with extracapsular extensions in one).  He was diagnosed  in late February 2011/early March.  In early April he had a surgery to remove remaining lymph nodes in the area.

June-July 2011-  6 weeks of radiation to area

July 2011-2012- Interferon treatment

I have done so much research on whats to come, and the statistics are just heart breaking.   I've been to almost every single appointment, so I'm pretty well informed with everything; however, I just feel like there is so much information I do not know.  

I want to stay positive and think that treatment is behind us and the only thing to focus on now is follow-ups; however,  I can't get the stats out of my head.  We haven't had any discussions with doctors on the what ifs.... 

 

If it changes to Stage 4....

1) What are the treatment options- how long, effectivness, how does the side effects compare to the previous treatments

2) Less than 30% survival rate....what on earth do you have to do to be one of those few people that live a long healthy life?

3) Are there ways to get Life Insurance with such a late stage of Cancer?

 

I do not like the "wait and see" game... he recently had a PET Scan done, and we will have results next week...and the scan-xiety just doesn't go away.   He doesn't want to think of the what ifs and worry...which I"m glad he is staying positive and upbeat, but it makes me scared to ask these questions to his doctors because I don't want him to think I"m not being positive about everything.  I so much hope that everything will be fine from here on out,  but the stats...tell me something else. 

 

Is it possible to look forward for life to return to what use to be normal anytime in the future...or is this the new normal? 

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bron's picture
Replies 2
Last reply 9/11/2012 - 10:32pm
Replies by: kelsta78, Anonymous

hi again. 

still confused here.

i have contacted Jay from australia and he states, get a second opinion.

Have talked my daughter into getting a referral from her doctor to PA hospital (largest melanoma hospital in Brisbane).

Have talked to the PA and they are happy to talk to her.

Phoned  MPA - Melanoma Patients Australia and the phone was answered by none other than the CEO who was walking past.

He could not give me much information but promised to have someone phone me back.. Nothing yet.

I used the chance to complain to him about the lack of help and information available on melanoma and that i had to get my info from the USA.

He listened and stated he was meeting with members of Parliment later in the month on that very subject. So here is hoping something may get

moving... I am also amazed at the lack of knowledge about melanoma by the australian people... since this all started every single person i have met believes that if you have a melanoma it is simply cut out and thats the end of it... even one child care worker told me that...we need more public awareness here.

My questions if anyone would please help me are.

1.Can a CT scan show up small tumors...my daughters doctors told her its a waste of time at this point.

2.Should she have any blood tests at this time . have seen LHD levels mentioned.

3.is the fact that her pathology shows the melanoma is ULCERATED really serious.

4.Do all tumors in the body show up by enlarged lymph nodes or can you have tumors without swollen lymph nodes.

The info out there says tumors likely (if they show up at all) between 2 to 5 years after primary mel removed. However my daughters mel lesion was on her back for up to 2 to 3 years prior to surgery so how do they calculate this...

Sorry for all the questions but these are the ones i havnt found answers to with my research.

My daughter was breslow 2mm with ulceration on her back with a clear lymph node removal.. i think its called the sentinal  .T2BN0M0

thank you and very kind regards from bron.

 

 

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jag's picture
Replies 1
Last reply 9/11/2012 - 10:00pm
Replies by: MeNDave
Insert Generic Inspirational Motto Here

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AllyNTAus's picture
Replies 4
Last reply 9/11/2012 - 8:37pm

Hi everyone,

I am currently on Dabrafenib, the GSK BRAF inhibitor, and thought I was doing great, had good scan results in late July, but yesterday I found what seems to be a new lump in my left armpit, and have had some intermittent aching in that area for a few weeks, so now I am really scared that my scans next week will show that D has stopped working for me (after only 5 months!!). Hoping against hope that the lump is something unrelated to Mel but today I just can't shake that feeling of doom.

That has led me to start trying to find out about other options so I am ready to talk to my doctor next week should we need to have the conversation about alternative treatments. Obviously Yervoy would be one option (at very significant cost, but if we have to pay we will), but I have also been really encouraged hearing the good stories about anti-PD1. I had a bit of a search last night and came up with one trial listing in Australia, that is Merck's MK-3475 which is listed as recruiting. I might not be searching correctly but I couldn't find any other anti-PD1 trials listed in Australia.

Is there anyone out there with any experience of anti-PD1 in Australia? Would be grateful for any information.

Best wishes to everyone,

Allison

A bad day's fishing beats a good day's work everytime

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frankMill's picture
Replies 10
Last reply 9/11/2012 - 7:40pm

HI Everybody,

3 weeks ago after a workout at the fitness center, I noticed a 1.5 CM lump near my left nipple.  Since then I've been through mammograms (not something most men get the chance to have :), ultra sounds, needle biopsy, PETscan, tumor removal, and SNB under my left arm.  I have new respect and admiration for all of those ladies out there with breast cancer.  When they gave me the 4 shots through the nipple for the SNB with no anesthetic, I about came off the table! OMG!!!

What a whirlwind! The diagnosis was advanced metastatic melanoma.  To say the least, I'm scared and it's hard finding people to relate to.  I'm happy I found this site.

All of my treatments have been at Baptist Hospital in Jacksonville, FL.  They seem to be very competent, but I have a feeling I really need to be in the care of a hospital like Moffit in Tampa.  Nothing against Baptist, but I really need to feel like I'm dealing with the best melanoma specialists possible on this journey.  I have an appointment with Dr. Jeffrey Weber in a couple of days.

Tomorrow I get the results of my SNB and it's really scary.  It seems like every step along the way has another surpise in the wings.  It would be nice to have someone give me a heads up on what's to come.  As an example, what do they do next if the SNB is negative?  What do they do if the SNB is positive?  Do I need to have more lymph nodes removed? Does an anti-angiogenic diet help melanoma patients?  The surgeon tells me the tumor is out and I'm done, but I sincerely doubt that.  I'm sure that I will need some kind of post surgical treatment.  Immunotherapy?

Due to the fact that I had a skin melanoma 4 years ago (it hit me right between the eyes!), this is now classified as a stage IV according to the oncologist.  He thinks I'm very lucky that the PETscan showed no other nodes and my bloodwork looks good.

I apologize for not having mastered the medical jargon, but I'm rapidly learning.  The most important thing is that I can't let myself go to the dark place and be depressed or angry.  I'm ready for battle.  It would be nice hearing from some other warriors that have been through this for support.

Thanks,

Frank 

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frankMill's picture
Replies 2
Last reply 9/11/2012 - 11:36am
Replies by: Anonymous, Janner

I just had a stage IV melanoma surgically removed from my chest last week.   Trying to learn as much about melanoma as I can. My melanoma is  MART-1 positive.  What is this?  Trying to get into the PD1 trial at Moffitt.  Is having MART-1 positive good or bad?

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Anonymous's picture
Anonymous
Replies 12
Last reply 9/10/2012 - 6:27pm

Hi, new here and looking for some info, input, people's 2cents etc.  As you can see below, I have quite a few questions!

my husband was diagnosed with melanoma just over a month ago.  Clark level II, Breslow 0.19mm  so pretty small.  But it is on his face... so they have done a wide excision biopsy and skin graft.  Healing well.   The pathology came back a few days ago saying that the wide excision biopsy has no evidence of residual in situ or malignant melanoma.  However, they didn't do a sentinel lymph node biopsy because it is on his face... so we don't actually know whether or not there is any cancer in his lymph nodes.

However, we just got a call from our local cancer centre saying that the radiation oncologist wants to meet with him... no other information.  So as I now sit around wondering...

Does anybody have any input or info about a similar type/stage of melanoma?  what is normally done for treament if the wide exision biopsy comes back clear? from what I read online, it should just be done with now (aside from long term monitoring), so I am really confused about this oncologist appointment... Has anyone here had radiation therapy for melanoma?

 

thanks a bunch!

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