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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randallgford's picture
Replies 2
Last reply 3/23/2013 - 11:16am
Replies by: randallgford, Janet Lee

Randall started Yervoy two weeks ago after lung biopsy, CT and PET scan showed tumors on lungs,

abdomen, two small ones on liver, and spine. Brain MRI was inconclusive, decided to do a double contrast

MRI. Well the result is 5 apparent lesions, we are doing cyberknife by next week if another MRI can be 

scheduled, then a day to plan it (?) I got the impression from reading on this board they mainly do cyberknife

for brain. Why not for lungs/spine etc.? Just curious. I guess its more wait and see, some respond, some don't.

I am having a hard time with what to tell my daughter she is 20, across the state, a junior in college and doing

great with grades, a job, and an internship. Very busy and focused. We went there and told her about the cancer returning,

but at that point we only knew it was in the lung (after the biopsy) and we pretty much assured her he would get

get treatment and beat it. I feel like Im not being truthful, she is coming home next weekend for Easter and I have

to figure out what if anything, else to say. Randall doesnt want to stress her out. He still feels decent and goes to work.

Mostly I try to think positive, but this is serious  especially with the brain involvement.

Never give up!

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SDC_Bolts's picture
Replies 9
Last reply 4/6/2013 - 9:56am

Brief overview of our story.

My wife (33 years old) and a mother of two, was diagnosed with melanoma in April of 2010.  The melanoma was in her groin area, a area not exposed to the sun, and she is not a tanning bed person.  Had surgery on April 30th, 2010, to remove tumor in left groin, superficial lymph node dissections left groin, 2/3 sentinel were positive for melanoma, 29 lymph nodes removed from groin area at that time.  Started Luekine injections for one year.

Feb 21 2012, reoccurrence in left groin, surface melanoma removed along with smaller tumor underneath it.

April 2010, blockage in pancreas causing issues, whipple procedure done to remove blockage and resumed luekine injections.

July 2012, another melanoma removed. Continuing injections.

October 31st 2012, stomach/back issues, found tumor in bile duct of liver, stint put in place to allow bilirubin to pass, moved on to ZELBORAF (vemurafenib). At this time tumors were in abdomen area as well. Started ZELBORAF on Nov. 9th.

PET scan 3rd of January 2013 were great, almost all cancer was gone.

Late January of 2013, tumors grew throughout abdomen and liver. Started 3 drug chemo therapy treatment January 26th. Drugs were Avastin, Abraxane, and Carboplatin. 

While on chemo, my wife was doing pretty well.  Then she had severe pain in her back, after further review found out she had two stones (we knew these were present before) both drop to her ureters, one on each side. She went through 3 or so weeks of hell, getting temporary stints due to bacteria around the stones, then a week later getting those taken out, stones removed, and then temporary stints back in place to be removed a few days later.  Once these were removed, she was still in severe pain intermittently, which we thought was due to the stints.  Finally after a week of this we went back to the hospital to get another CT, which then showed that more tumors had grown and were around her kidneys and lower intestine area.

At this time she had just done a chemo treatment so we had to wait awhile before the next treatment stage.  We just started YERVOY yesterday.  As I understand it this is a great drug but slow acting, this is why the Dr's didn't want to try it earlier, they wanted to get a jump on the cancer before going to this drug. 

At this time, there really are no other options being presented to us, I do have confidence in the place we are being treated, but wanted to know if anyone had any other experiences that they would care to share, or options they can think of.  We are willing to travel for further treatment, as of now we go to Mayo Clinic in Rochester MN, which in our area is the best around us from what I understand.

Thank you for your time reading our story and hopefully some valuable input.

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Kudos to the MRF for last weekend's volunteer summit in DC. The sessions were lively, informative and well targeted. It was an emotionally charged weekend listening to many people's stories. I came away with renewed hope and fully energized to continue spreading the word about melanoma. If you missed this event, please consider registering for MRF's Legislative Day on the Hill on May 14 in DC. You can get the details about it and all MRF volunteer opportunities on their homepage, www.melanoma.org. I finally feel like I have started to fulfill the promise I made to myself when I survived longer than expected and it feels really good. Please know I keep everyone dealing with melanoma close to my heart and always in my thoughts. Keep fighting the beast!

I have melanoma but melanoma does not have me!

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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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miswod's picture
Replies 2
Last reply 3/21/2013 - 9:44am
Replies by: Janner, natasha

My wife has recently had one of these removed and awaited results from our local hospital.  She has been given another appointment and been told this may require further treatment and they want to discuss options.

She has convinced herself that this means the mole is cancerous. I have been saying that it is probably standard procedure to give her advice and maybe check the wound etc.

Does anyone have experience of how the NHS in the UK proceeds following an excision of such a mole?

I am just trying to establish if this follow up appointment could just be routine or not (it's 6 weeks away!). Obviously, it may be bad news but not necessarily.

Any information would be appreciated.

 

Miswod

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Tina D's picture
Replies 17
Last reply 3/25/2013 - 3:15pm

I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.

It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!). 

Tina

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awillett1991's picture
Replies 3
Last reply 3/24/2013 - 2:01pm

Finished Ipi Dec 3rd, thyroid levels high then closer to normal, bouncing around during and since. Dr says he has seen it before and believes it will eventually settle down to a consistent level - hypothyroid- treated with synthroid. I'm so sleepy during the day, have plenty of energy to do what I want, just sleepy when I sit down for something. No med changes. Nurse offered to run thyroid blood work but I passed since they wont treat it yet anyway, why bother? Anyone had Ipi wear out their thyroid? How long did it take to stabilize?

She really doesn't think it's the Zelboraf either though I am suspicious...

Thanks, Amy

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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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Clareh's picture
Replies 3
Last reply 4/3/2013 - 2:31pm

I was diagnosed about a 1 1/2 years ago with melanoma.  The melanoma was on my upper abdomen.   I had a wide local excision as well as a sentinal lymph node biopsy.  Lymph nodes were clear. Melanoma measured right at 1mm.  Three months ago my oncologist felt an elarged lymph node under my left armpit.  I had a follow up appt last week and the lymph node was even larger and there was another enlarged lymph node in my right armpit.  I just had a CT scan yesterday . . . now have to wait for my appointment for resutls.  I hate just waiting . . . I am the type of person that likes to gather as much information as possilbe and prepare for what "might" happen (just the way I am) . . . any opinions?

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kkhalsten's picture
Replies 7
Last reply 3/22/2013 - 1:04pm

Well, 7 weeks (1/31) after my lumphodenectomy on left groin area-

3/16 found a small marble size lump on excision- went to the oncologist yesterday- wasn't happy about the measurement, location, and feel of the lump. Now, scheduled for ct scan and from there biopsy. I won't stress until results come back-

The cancer center I'm attending offers chemo, interferon, for stage III (preventive) ..since I'm high risk with my groin lymph node reoccurrence- they did offer me interferon or chemo, but oncologist commented that those treatments have been around for years and they don't really work...thought this was strange..

Now, that I may be facing surgery again...I'm thinking of what the best treatment option would be....no chance to travel to MD Anderson or other places due to insurance/financial reasons. I'm going to have to work with the options/docs/info I have at the cancer center I'm at right now.

Question- do people choose treatment after reoccurrence although pathology is NED? If this more of a preventive option in case mel. cells are traveling through body and unseen on scans? Or do people only choose treatment when results are showing 1 or more nodes are diseased?

I understand these are novice questions- be easy on me.wink

 

 

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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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audgator's picture
Replies 5
Last reply 3/21/2013 - 3:27pm

 

About a year and a half ago I had a very low moment in a Publix Supermarket.   I had just 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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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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