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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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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vicuk's picture
Replies 2
Last reply 3/20/2013 - 6:58pm
Replies by: NYKaren, Fen

Helen went for her scan last week and the trial drugs (dabrafenib and trametinib) are still working. Lung mets still too small to be measured and hip tumour decreased in size again! So relieved.

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bj63's picture
Replies 5
Last reply 3/20/2013 - 5:13pm

Hi all:

I've recently created a profile if you're interested in any background info.

I've been on Zelboraf since November, with good results overall.  However, I'm now seeing a lot of new small, dark moles - like my arms and particularly my legs have been sprinkled with pepper.  This in spite of the fact that my last PET scan showed dormant tumors and no glucose activity.

Anybody else  on Zelboraf seen this?  I'm scheduled to see a dermatologist next week.

BJ

Sometimes no news is the best news!

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/20/2013 - 3:21pm
Replies by: Janner

Hi everyone!  I know there is a good chance that nobody will know for sure, but I am really curious for opinions.

I am 21 years old and I am a bit of a hypochondriac.  I have a variety of moles on my body and I have had them since I was a child.  I have always had this mole on my forearm, right below where the crease is where my arm bends.  It is a teeny tiny bit raised.  It appears to be the same size that it always was, except I noticed a dark dot on the right-hand side of the mole.  To be honest, I am not sure if this is new or not.  The mole has always been dark but the dot looks even darker than the mole itself.

Here is what it looks like:

http://oi45.tinypic.com/180hs2.jpg

It is not very big.  It is nowhere near the size of a pencil eraser, which I heard is used to test the "diameter" part of the ABCDE test.

I can't decide whether it's worth it to go to the doctor or not, or just wait to see if it changes.  Three people on both sides of my family have had skin cancer, but at much older ages than where I am - triple my age at least.  I am only in the sun really in the summer and even that's not much.  I know I would have to go to the doctor and then get a referral for a dermatologist.  There is a good chance they might not be taking any new patients.

Opinions?  Thank you so much!

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Hello everyone,

I am a dark skinned person, Indian. I thought Melanoma only affects people with lighter skin.
But I recently educated myself that it is not the case.

I was concerned about a mole or a red patch that was under the foot, sole of my foot. I vaguely remember seeing it a long time ago as a single red spot, it didn't pain or anything so I left it.

Recently after I got to know about Melanoma and its ABCDE, I looked at this patch which seemed to fit well with Melanoma diagnosis. I once showed this to a doctor, at that time he said it is probably a broken blood vessel it doesn't look like a mole, just ignore it but keep an eye on it.

This is making me paranoid that it has irregular edges, but it is completely flat. It is not raised and it is over 6mm. 

I am posting the pictures and links here, if anyone can give an insight it would be nice. 

 

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audgator's picture
Replies 4
Last reply 3/20/2013 - 1:11pm
Replies by: rosa1, Tina D, Owl

About a year and a half ago I had a very low moment in a Publix Supermarket.  I had finished the complete course of treatment with ipi. At the follow-up scans we discovered that I had not responded and my mets had grown larger.  A few weeks later I was at the deli counter in Publix next to a young man who reminded me of my son: about the same age, similar height, same beginnings of male-pattern-baldness.  He was holding an infant a few months old.  It struck me that I may not live to see granchildren.  I teared up and almost broke down right there in front of the mortadella.  This afternoon, my daughter-in-law delivered a 7 pound, 5 ounce grandson who I expect to see graduate from high school.  Thank you researchers, BMS, Moffitt, all my doctors, nurses & techs, and of course my newly-expanded family.  And all of you.      Dan

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bigb0624's picture
Replies 4
Last reply 3/20/2013 - 12:35pm
Replies by: Gene_S, NYKaren, rosa1

I had my 3rd. infusion today and up to now i haven't had any side effects.  Now i have some small rashes and lots of itching.  To those of you that have had the itching, how long does it last (days, weeks, months, etc.) and what helped alleviate it the best. This is an amazing place to go and it has meant a lot to me and i am sure everyone feels this way.

Thanks

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mark d's picture
Replies 10
Last reply 3/20/2013 - 1:59am

I have faced the fact that cancer is an evil creature that may take my life. I am just trying to see how many people have kicked its ass. I am stage III with 3.6 mm nodular melanoma one sentinel node was positive and getting more nodes cut out. How long did you have it and what stages were you, what treatments and how long have you survived this evil? I am fighting this with everything I have and will have. I am not going to quit just yet. Also I am in central Texas. Is anyo e else around the Ft hood area?

Mark D.

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Charlie S's picture
Replies 8
Last reply 3/19/2013 - 10:19pm

May the loading of your IL2 big guns today reach your quarry !

Hang in there and go get 'em !

Cheers,

Charlie S

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Amanda's picture
Replies 3
Last reply 3/19/2013 - 9:57pm

As we knew from sight, randys tumors that can be measured under the skin, have all decreased in size...about 7 total, including a 12cm tumor in his chest wall.  The tumor along his jaw bone is 'significantly' smaller, and the smaller one that was below it is very tiny, and can barely feel it.  Dr. Ribas is very pleased, and we're hoping the same is happening in his lungs and other mets.  We'll know how that's going after one more infusion, then scans...blood work is all fine, going good!!!  I feel so blessed right now, and pray for continue shrinkage.

_Amanda

"Give thanks in all circumstances"

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I've had 3 doses of anti-pd1 so far.  After the 2nd dose I started to notice an increase in occular migraines.  I've had them before but not very often.  They also started about the same time I got a horrible rotten headcold.  I still have tons of sinus pressure.  I talked with the fellow at my last appointment but they didn't seem very concerned about them at all.  Has anyone else experienced this?  

So far it seems most side effects have been pretty minimal.   Some fatigue, itchy skin, 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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Ann from Iowa's picture
Replies 19
Last reply 3/19/2013 - 12:49pm

So this will not become to lengthy...go to my "Ann from Iowa" to read of my husband's melanoma history.  In short he has been NED now for 2 1/2 years, Stage IIIB, Leukine treatment for 1 year and radiation to auxillary, left arm.  He has been a smoker and chews tobacco since he was 14 years old and is now a very healthy 69. 

We went for his 6 month check-up last Friday and his chest x-ray showed lungs clear, no other problems.  Skin exam done by a lady other than the doctor and she discussed his smoking history.  He was told when they found the melanoma in his lymph node, 5 cm with extranodal extension that he must quit his tobacco use.   Well, that has not happened, the old adage that "I am invincible."

The Dr. a melanoma specialist came in the room, did not say one word as to his good report but began to lecture him on his continued use of tobacco, and I feel he has the right to do this.  But what stunned me was that he told my husband that if he continued his smoking and chewing tobacco he will not treat him in the future for ANY cancer that according to him will come at some time or another surely within the next 10 years.  The Doctor said he had previously been a smoker and quit and if he could do it so could anyone.  He turned to me and said I was to make him stop.  He then left.  End of  appointment.  To make this story complete, within a half an hour my husband was smoking a cigarette and has not looked back yet.

I am the one needing the help as I just don't know what to do as to future follow up appts. with this Dr.  Since it has been 2 1/2 years since he ended treatment all he gets now is a chest x-ray and visit with the Dr.  It  seems to me that if my husband does not stop these habits that we should not go back for further appts. as I am taking him at his word, he would not treat him anyway if he were to find more cancer or a smoking related cancer.  Should we just go to his local dermatologist now or should I at least go by myself and talk to him for advice.  Frankly, I am so upset by this I cannot see straight and certainly do not know what to do. 

 

Because my husband was told that the Leukine treatments that he took have been proven to not be of any benef,  but his melanoma has not returned after they just about gave him a death sentence when it came back in his lymph node I think he has taken this lightly and he truly is addicted to tobacco as he has watched his 5 brothers and sisters die young from COPD and heart disease but still has not stopped .  How can you not take that seriously.  In any case, any advice would be appreciated.  From my perspective if all doctors were to quit treating patients because they refused to either lose weight, quit using so much salt, go on a special diabetic diet for all the other bad health issues, many people would no longer have a doctor to treat them.  Just thoughts that are running through my mind as I try and deal with this.    I read daily to try and learn about melanoma just in case his would return.  Education seems to be the best route and this site has so much good information along with the support.  Thanks for the ear.

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/19/2013 - 10:12am
Replies by: hbecker

Does it work?  I tried to send a personal message to someone and it didn't see to go through.  Also, if it did go through and there is a response, where does that show up for me to see it.

 

Thank you

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mark1101's picture
Replies 5
Last reply 3/19/2013 - 9:48am
Replies by: mel123, mark1101, 94z28joe

I am 1 week in to ipilimumab for stage IIIc melanoma which involved 5 left axillary nodes.  These have been removed and the original site margins have been cleaned as well.  I was curious about others here who are in or were in or are considering entering this trial.  What are your experiences and thoughts?  I am in arm C and received my first infusion of 3mg/kg ipi a week ago.  So far I am feeling good, but feel paranoid waiting for some symptom or another jump up and bite me.  Sometimes our imaginations can be our worst enemies.

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