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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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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Thanny's picture
Replies 15
Last reply 9/17/2012 - 8:15am

Hello All. My wife is stage 3C and after a year of NED, she has had 4 tumors pop up between her primary and her lymphnodes (had 2 lymphnodes removed last june, both positive for melanoma) in the span of 45 days which means that the melanoma is in transit. Outside of her surgeries (to remove the primary and the lymphnodes) she has never recieved any treatment, which makes her eligible for the GSK MEK and BRAF trial. 

This comes as a big blow to us, as we were hoping to start a family soon. If we enter the trial we will have to give up on starting a family for at least 3 years (god willing), so with those things in mind, we were hoping some of you can speak on our situation.

Once melanoma starts coming back in her limb, what is our prognosis?

Do we have time to try for children before entering treatment? if not....how about after?

If we do have time before starting treatment, we were thinking of having an isolated limb perfusion before we start trying, with hopes that this would buy us some more time before she can start treatment. Is this a good option?

Please don't think we are being selfish or greedy. I know some of you out there would kill to be in our shoes, and we do recognize that even with this bad news, we are still fortunate to have these options. However, like it or not, these are our options and we would be foolish not to seriously consider each one.

 

Thank you in advance,

Nate and Thanny

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/16/2012 - 5:49am

Is there anyone out there who is actively in this trial?  My SIL is considering it.  I have tried to understand which is which, but unless I am misreading, neither of these are the same as vemurafenib, which was what we understood to be the treatment of choice now that she is B RAF positive.  If there is a thread that already addresses this, I apoligize.

a

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frankMill's picture
Replies 7
Last reply 9/16/2012 - 10:53pm

I got my HLA test results today and I am negative.  Not eligible for the anti-PD1 trial at Moffitt.  I was really depressed for several hours until someone I love pointed out that because I am now NED after the surgery, perhaps God felt that there was someone else in greater need of one of the five open trial slots. I'm sure that Moffitt will come up with another adjuvant treatment for me. 

This stage IV melanoma stuff really has it's ups and downs, a real roller coaster ride!  Does it ever get any easier or more certain or do I need to live every moment in fear?

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Anonymous's picture
Replies 1
Last reply 9/14/2012 - 6:17pm
Replies by: Anonymous

SPECT/CT Before SLN Excision Improves Melanoma Survival
IMNG Medical Media. 2012 Sept 11, J Smith

Single-photon emission computed tomography/computed tomography imaging before sentinel lymph node excision was associated with significantly higher disease-free survival rates in melanoma patients, according to the results of a new study published in JAMA Sept. 12.In addition to less local relapse and a better 4-year progression-free survival, SPECT/CT was associated with the detection of more positive nodes, more sentinel lymph node-excision (SLNE) procedures performed in the head and neck area,...

http://www.oncologystat.com/news/SPECTCT_Before_SLN_Excision_Improves_Melanoma_Survival_US.html

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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JenJen12's picture
Replies 11
Last reply 9/14/2012 - 11:58pm

Hey all,

 

I'm probably being paranoid but what are some of the symptoms or signs you have had if you had a melanoma recurrence in your intestines, colon etc?

 

Thanks!

 

JenJen

3a with recent pet/ct scan scare (other than that 3 .3 years NED)

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POW's picture
Replies 3
Last reply 9/15/2012 - 7:33am
Replies by: POW, W., lhaley

I recently wrote a post that I now realize could confuse and frighten people needlessly. Is there any way I can delete my own post? If not, who should I contact to get that post deleted?

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MaryD's picture
Replies 8
Last reply 9/15/2012 - 8:55am

Almost twelve years ago I started my journey with melanoma and since that time have done 1 year of interferon,  a peptide vaccine clincial trial, radiation, ipi after progressing to stage IV via a lung met, and a 6 month course of pulsed IL-2.

Yesterday I had my six month CT scan and have officially gone 4 years since the last recurrence - something I couldn't have imagined happening!   There are so many fighting this disease valiantly and with great courage - I can only wish that this news gives encouragement and hope to all.

Mary

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