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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awillett1991's picture
Replies 2
Last reply 9/18/2012 - 10:03pm
Replies by: AllyNTAus, POW

After some very questionable areas on my PET 2 weeks ago, I had a clear CT report yesterday. So after 5 mos on ( and off) Zel, tiny brain met resolved, and cardiac tumor has shrunk to the point it isn't visible on PET but MRI shows it as 7x11. And NOTHING NEW!!

Due to my low lymphs (thanks biochemo) + cardiac met, I am intelligible for HD IL2 or any trials :(. Before Zel fails we are going to try IPI since I've never been on it. Probably next wk - waiting on insurance and I have to wean off 5mg of Prednisone I've been on since April.

Then going back on the Zel, or hoping the new BRAF and MEK drugs will be approved by then. Some lesser side effects would be great. At 5 mos, the hair on my head JUST stopped falling out, it is so thin now - blech.

Would love to know if anyone has tried this or similar. I don't really have a lot of options, yso this seems reasonable to me while I have very little disease.

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POW's picture
Replies 8
Last reply 9/19/2012 - 10:09pm

When my brother was diagnosed with brain mets, he was told not to drive because he could have a stroke or a seizure at any time. Does this mean that he can never drive again? Do other people with brain mets drive? 

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lrkg1234's picture
Replies 3
Last reply 9/22/2012 - 7:45pm
Replies by: lrkg1234, Beth, Phil S

Hi,

My husband Scott was diagnosed a little over a month ago with stage 4 mucosal.  The cancer has spread to the liver, but not big time.  The source (primary) is the esophagus and it's inoperable.  

We found out that he was C-Kit positive and that there was a Dasatinib trial for C-kit patients going on 2 miles from our house at IU methodist in Indy. 

He started taking his pills Friday.  So far no side effects. Has anyone else tried this and how did it go?  How long do you think it takes to do anything?  They will do blood tests soon and then every 2 weeks. Scans will be every 6 weeks. 

He is so uncomfortable sometimes.  He is still working and carrying on as usual, but I know it's exhausting and painful at times. It's so hard to know this misery is going on and that I can't do anything to help.  He doesn't say anything about it but it's not hard to see.  I hope this stuff works!

For now he's just taking hydrocodone for pain and it works fairly well, but he's already getting used to it in just over a week.  Any suggestions??

Thanks, Lisa

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Erinmay22's picture
Replies 15
Last reply 10/3/2012 - 8:05am

Ok - I know this has been discussed some before.   I am set Oct 4th to have surgery done on my small intestine to remove a section that has been showing up on my scans since May as significantly inflammed bowel.  I tried Zelboraf since May.  July scans showed some shrinkage but Sept scans showed it 's back to the same size as it was in May.  

Was given an option to start Ipi and see what happens (since not having many symptoms) but I prefer to just have it cut out!  Can anyone give some details on what it's like, what to expect, etc? 

Thanks,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2012 - 8:47pm
Replies by: Anonymous, LynnLuc, Charlie S

Will there ever be an alternative to Interferon? Are we even close?

This wait and watch is killing me, but Interferon does not have the best outcome.

I am not up to date on the recent advances. Are there any?

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sjl's picture
Replies 6
Last reply 9/26/2012 - 3:45pm
Replies by: MeNDave, sjl, shellebrownies

My husband was diagnosed with mucosal melanoma in the nasal cavity in April.  He had two surgeries on the nose (clear margins the second time around)  and lymph nodes,, one of which tested postive, removed.  Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed.  While waiting for treatment for the lung cancer, his melanoma marched on.  He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal.  A biopsy was done and confirmed to be melanoma as suspected.  Meanwhile, everything kept growing every single day while we waited for a phone call telling us when to go back for another scan before they decided what to do.  I won't get in to all the communication problems between the doctors involved but in a matter of days the things were huge and pain developed.  It took some doing on my part but they finally told me to take him to the ER two hours away, and yes, he is being treated by a melanoma specialist at a major cancer center.  The largest tumor was pressing on a nerve, causing pain, pressing on an artery, causing high blood pressure, and close to affecting his breathing and swollowing.  They were going to discharge him after a couple of days and schedule an appointment with the melanoma guy again.  This, after all they had seen!  I got wind that the doctor was leaving the country for a few weeks and insisted that we be seen that day.  He was, and things got started.  My husband is BRAF and CKit negative, not able to tolerate IL2 (at least for now) and because things were moving so fast they decided against Yervoy and went with Carbo/Taxol.  It's working!!  I watched the tumors shrink as fast as they grew!  After one treatment, the main tumor was pretty much gone and they said they don't usually see any kind of response like that.  Has anyone else here seen that kind of a response and if so, how long did it last?  They told us that there was no durable response with the chemo and that they would use it until they could get to something else.  Last week at round 2 of treatment, they said it might just work in him and that they may not do anymore after he's finished the chemo - just keep scanning and watch.  He goes for another treatment next week and will be restaged at that time.  As you can imagine, we are pretty happy right now but I know how fast things can change.  He's not elligible for a clinical trial because of the lung cancer.  I know the options are slim, but what should I be asking the doctors and what should I be looking for?  I've learned a lot from skimming this board.  The PA told me I ask a lot of questions and that most people don't do that.  Really????  With something like this????  I like to be informed - the good, the bad, the ugly.  "I don't know" is an acceptable answer too, but I want to know as much as I can about this, realizing that there are no guarantees, everyone is different, and so on.  I'd love to hear from others who have tried carbo/taxol.

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PeterO's picture
Replies 4
Last reply 9/20/2012 - 6:11am
Replies by: Amanda, POW, PeterO, lhaley

It took time, prayer, research, and conversation with my medical team, but I've now settled on a plan for how to treat my stage IV disease. Here are my blog posts on how I arrived at my decision: www.theogler.blogpost.com.

www.theogler.blogspot.com

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Anonymous's picture
Replies 9
Last reply 8/7/2014 - 6:58am
Replies by: Anonymous, Crystal0702, Charlie S, LynnLuc, Janner

I was recently diagnosed with melanoma in situ.  I want to ask the MD the right questions.  What things should I be asking?

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Mandi0280's picture
Replies 6
Last reply 9/19/2012 - 1:49pm

Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing ...referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

Thanks,

Mandi

Mandi

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Mandi0280's picture
Replies 2
Last reply 9/17/2012 - 12:12pm
Replies by: Mandi0280, Janner

Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing ...referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

Thanks,

Mandi

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/17/2012 - 11:51am
Replies by: Janner, Anonymous

I've was diagnosed with early stage melanoma years ago.  I only needed wide excision.  I am considering getting a tattoo.  Are tattoos safe for melanoma survivors?

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Karin L's picture
Replies 5
Last reply 9/18/2012 - 11:38pm

I APOLOGIZE for just now getting back here...it's been one of those rides and I have run out of gas  I posted a ten days ago (something like that) about my side affects with Zelboraf.  I literally got every one.  At 7 days they took me off.  As of yesterday, all side affects seem to have lessened or gone away.  Everything but the fevers and chills.  We are on day 15? now?  Something like that. 

Anyway, on Monday evening (last week) my Oncologist's partner wanted me seen at the ER.  She was concerned about the fevers lasting so long after stopping treatment.  Off we went.  Diagnosis after chest x-ray.....Pneumonia.  What?!?  Ok, so be it.  I stayed for IV round of antibiotics and sent home with script for Avalox.  Had appt. with my reg Onc. on Wednesday.  He did not believe it was pneumonia, but he did believe it to be mel.  He asked if I have the blood cultures which I did not.  Once I got home I called the Dr. who had the results and had them faxed to my Onc.  The cultures were neg. which rules out it being pneumonia.  Dizzy yet?  Onc. also put me back on Z 1pill 2x a day for 3 days, 2pills 2x a day until we get back from a short trip with the family (first in YEARS). 

I have no clue where or what my disease is doing.  Scans sometime in Oct.  I just want to feel good for a bit, ya know?  These all day all night fever episodes are getting the best of me.  Today, I will bake gingersnap and choc. chip cookies to freeze for the trip and turn my back on the beast. 

I pray for all of you each and every day who are warriors fighting the ugly.

 

Karin

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Maereard's picture
Replies 6
Last reply 10/31/2012 - 6:09pm

Hi I am new here.  Any information you can give me would be so greatly appeciated.  On Monday last week I was told I have malignant melanoma.  Breslow dept .25mm, Clark level 3.  Ulceration not identified and the volume of the dermal tumor was insufficient for mitotic index.  After panicing for three days thinking that the clarks level was the same as the stage, I came across a post on here that explained it is not.  That made me sleep a little better.  Originally when my dermatologist gave me the news he wanted to send me to a plastic surgeon to have a larger area removed.  The spot is located on my right shoulder blade.  The plastic surgeon could not get me in until the 24th, after showing up in the dermatologist office crying my eyes out he agreed to do the surgery himself this past Thursday.  I am currently typing with a railroad track of stitches down my shoulder:)  The original dermatopathology report was sent to my family doctor who has insisited that I see an oncologist.  I will see the oncologist tomorrow at 8:15.  I do not have the last results from Thursdays surgery back and probably will not until sometime next week.  I have a million questions and if someone could please shed some light on the darkness I feel right now I would be so appreciative.  The dermatologist seems to think this was found very early.  He says that the next test should come back all margins clear and I will just need follow up appointments to monitor for any new spots that might appear.  He thought originally that the family doctor would probably send me for a blood test and a chest x-ray.  I smoked when I was a teenager and thought it was cool.  I think the most I got to was a pack a week for several years.  I am now of course convinced that this means the melanoma has spread to my lungs.  I was not a sun worshipper.  I tried laying out for a tan and attempted the tanning bed a few times but it never worked in my favor so I gave up.  I have never been a huge fan of the sun because I burn.  I am an only child but come from a large Irish family and am the first to be diagnosed with this.  I have three children and currently am still nursing my nineteen month old daughter.  Does anyone know of a doctor that specializes in melanoma in Indiana or Kentucky?  I want to make sure I cover all angles in order to see my nineteen month old daughter grow up and go to college, get married, ect.  Has anyone has a breslow thickness as small as mine and still had to have lymph nodes removed?  Have they come back positive?  Has anyone heard of Dr. Stephen Schultz in Indianapolis, IN?  He is an oncologist with Community North Hospital but he does not have a website so I can not figure out how familiar he is with melanoma.  What state would I need to look in to find the best doctors?  Thank you for any help at all!

Beth Thompson

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Maereard's picture
Replies 5
Last reply 9/19/2012 - 10:06pm

Hi I am new here.  Any information you can give me would be so greatly appeciated.  On Monday last week I was told I have malignant melanoma.  Breslow dept .25mm, Clark level 3.  Ulceration not identified and the volume of the dermal tumor was insufficient for mitotic index.  After panicing for three days thinking that the clarks level was the same as the stage, I came across a post on here that explained it is not.  That made me sleep a little better.  Originally when my dermatologist gave me the news he wanted to send me to a plastic surgeon to have a larger area removed.  The spot is located on my right shoulder blade.  The plastic surgeon could not get me in until the 24th, after showing up in the dermatologist office crying my eyes out he agreed to do the surgery himself this past Thursday.  I am currently typing with a railroad track of stitches down my shoulder:)  The original dermatopathology report was sent to my family doctor who has insisited that I see an oncologist.  I will see the oncologist tomorrow at 8:15.  I do not have the last results from Thursdays surgery back and probably will not until sometime next week.  I have a million questions and if someone could please shed some light on the darkness I feel right now I would be so appreciative.  The dermatologist seems to think this was found very early.  He says that the next test should come back all margins clear and I will just need follow up appointments to monitor for any new spots that might appear.  He thought originally that the family doctor would probably send me for a blood test and a chest x-ray.  I smoked when I was a teenager and thought it was cool.  I think the most I got to was a pack a week for several years.  I am now of course convinced that this means the melanoma has spread to my lungs.  I was not a sun worshipper.  I tried laying out for a tan and attempted the tanning bed a few times but it never worked in my favor so I gave up.  I have never been a huge fan of the sun because I burn.  I am an only child but come from a large Irish family and am the first to be diagnosed with this.  I have three children and currently am still nursing my nineteen month old daughter.  Does anyone know of a doctor that specializes in melanoma in Indiana or Kentucky?  I want to make sure I cover all angles in order to see my nineteen month old daughter grow up and go to college, get married, ect.  Has anyone has a breslow thickness as small as mine and still had to have lymph nodes removed?  Have they come back positive?  Has anyone heard of Dr. Stephen Schultz in Indianapolis, IN?  He is an oncologist with Community North Hospital but he does not have a website so I can not figure out how familiar he is with melanoma.  What state would I need to look in to find the best doctors?  Thank you for any help at all!

Beth Thompson

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gabsound's picture
Replies 12
Last reply 9/16/2012 - 11:54pm
Replies by: gabsound, LynnLuc, audgator, Anonymous, awillett1991

I posted earlier about my last scans and started doing some reading on Anti PD1 trials, which I know are hard to come by. But the first two I read specifically excluded prior Anti CTLA or other immune treatment. My heart sank. If, I need another treatment I thought that would be the next one.

Does Yervoy exclude you from all Anti PD 1 trials?

I'm BRAF wild type (negative). I have the NRAS mutation. What else should I be looking at?

Any advice would be appreciated.

Julie

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