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

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MattF's picture
Replies 2
Last reply 9/10/2012 - 2:20pm
Replies by: Minnesota, MattF

So I had a good first week (last week) at MD Anderson. Initial consult with head and Neck surgeon, ultrasound and lymph node mapping.

This week I will have:

11 Sept 2012 - Neurology Consult (for right eye anisocoria, head numbness, loss of vision, floaters and eye pain) with Dr. Karin Woodman @ Brain & Spine Center MDA

11 Sept 2012 - Anesthesia  Consult

12 Sept 2012 - Wide Excision and SLNB with Dr. Carol Lewis @ Head & Neck Center MDA

14 Sept 2012 - Results from Wide Excision Margins and SLNB, and possible Lymph Node Dissection and/or Facial Reconstruction

Thank you all for the contunued support.

 

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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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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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bron's picture
Replies 2
Last reply 9/9/2012 - 4:43pm
Replies by: bron, Owl

hi again... i have been seeing comments in web pages re sugar and melanoma.

i am not sure if sugar is a bad thing or good.

would someone please let me know or give me a webpage on this topic...

thank you and very kind regards from bron

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ETF111's picture
Replies 44
Last reply 1/4/2016 - 10:40pm

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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o2bcheri's picture
Replies 2
Last reply 9/8/2012 - 10:38pm
Replies by: JuleFL, Anonymous

 

 

Hi..

 

this is about my best  friend who has mel... he has  been NED for  2 yrs... he had a mel on his shin.. was removed.. then microscopic mel showed up two years later in the sentinal lymph node in his groin..

had the lymphs removed..has been fine ever since..

told me today that he has 3 small "cysts" on his back.. he said they have been there for years.. and has not been worried about them but decided

to get them removed as they are getting bigger.. and he wants nothing growing in or on his skin...

he went to his onc.. who said he had not seen them  before.. but my friend says he knows for sure they have been there for years.. and the dr did not notice them as they were tiny...

the onc wants to take him in and do a wide excision on them right now.. not even testing them first to know what they are..

this seems a bit extreme to me without even biopsy first???

i have had many cysts that sound just the same... they have been removed in the office.. under local .. and voila gone..

 

any thoughts on this??

 

thanks..Michele 

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o2bcheri's picture
Replies 1
Last reply 9/14/2012 - 6:10am

 

 

Hi..

 

this is about my best  friend who has mel... he has  been NED for  2 yrs... he had a mel on his shin.. was removed.. then microscopic mel showed up two years later in the sentinal lymph node in his groin..

had the lymphs removed..has been fine ever since..

told me today that he has 3 small "cysts" on his back.. he said they have been there for years.. and has not been worried about them but decided

to get them removed as he wants nothing growing in or on his skin...

he went to his onc.. who said he had not seen them  before.. but my friend says he knows for sure they have been there for years..

the onc wants to take him in and do a wide excision on them right now.. not even testing them first to know what they are..

this seems a bit extreme to me without even biopsy first???

i have had many cysts that sound just the same... they have been removed in the office.. under local .. and voila gone..

 

any thoughts on this??

 

thanks..Michele 

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MikeWI's picture
Replies 4
Last reply 9/9/2012 - 7:08am
Replies by: Tina D, King, Wendi Lynn, scots

Whew made it a year.  I am complete with this and not had a reoccurance.  So happy to be done.  It was the worst thing medically I have ever done. I have never been so sick. And I would do it again.

Now we wait and see if the cancer comes back.

MikeWI

stage 2c - currently NED

Search and Destroy

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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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FightingItinPA's picture
Replies 1
Last reply 9/8/2012 - 7:32am
Replies by: Anonymous

My husband started his 20 treatments of interferon on Tuesday.   One week done.    He has been so blessed with no bad reactions.   No nausea.   Some chills and muscle aches.   Tylenol is working for him.     I appreciated all of the insights people gave me when we were trying to make a decision on what to do.   We chose to do the chemo because we didn't want to be a year ahead, have the cancer reoccur, and then regret not choosing treatment.   My husband survived prostrate cancer 15 years ago and he is determined to survive this.   We just had our first grandchild a year ago and he wants to be around to see her grow up.    Good luck to all who are also facing the tough decision to undergo treatment or monitor the situation. 

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard how the trail is going for the use of Ipi for Stage IIIA and Stage IIIB patients?

 

I am just wondering if the risk of reoccurance has gone down with these patients.

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jfro's picture
Replies 1
Last reply 9/7/2012 - 1:26pm
Replies by: Janner

Ok, Janner,

I stayed away until I had a nurse call me again. They had no idea I already received my path report and was attempting to explain it to me again before I spoke. She told me I have to get an excision because the mole was abnormal and they needed to find out what it is?? Does that make any sense? I challenged her by asking that a diagnosis was already written on the report and that doesn't make sense...blah..blah..

 

I'm sorry that I am bothering you again but it this is making my anxiety spin out of control. Thanks. :)

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JoshF's picture
Replies 2
Last reply 9/10/2012 - 8:25am
Replies by: LynnLuc, Janner

Ok...I can't take it anymore. I noticed a small soft bump on the back of my head.I noticed it a few weeks ago and it hasn't grown.  It's near the top of my head and I can only feel it when I run my finger in one direction. Otherwise you'd never know it was there. It's very soft and moves but of course gets the anxiety level up. Most people I ask think I'm crazy, then again they have never experienced melanoma. I have a derm appt in 2 weeks but wondering if anyone has ever experienced something similar. Wouldn't a melanoma tumor be hard and not move so easy? 

Let's work for better treatments....for a cure!!!!

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