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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Julie in SoCal's picture
Replies 1
Last reply 1/10/2013 - 6:16am
Replies by: buffcody
Dear Friends!

Yesterday I had my annual scans, and although the scanxiety was through the roof the results were worth it. I remain NED. Over the last 5 years I have read, and laughed and cried with folks here, I just wanted to write and say that I'm still here. I don't post much, but I wanted to share the good news and encourage everyone out there.

5 years ago I didn't think I would make it this far. When I was diagnosed, I had just made a major career change and gone back to school for my PhD. Needless to say Mel wasn't in my plans and after the surgeries and treatment it took me quite awhile to get my feet back under me (and my head screwed on right) so I could study. But here it is 5 years on. I continue to be NED and I should graduate in June

Friends, be gentle with yourself. It take a while to adjust to all the new normals (how I hated that phrase a few years ago). Lean in. Lean into folks around you who love you. You'll find them, although their identities may surprise you. And deepen your relationships with them. Also lean into your faith. Personally, I'm a follower of Jesus, and I have found that this has sustained and upheld and sometimes carried me kicking and screaming. But it has now been tested by Mel, and I have found God is so much bigger. But whatever your faith is, lean in. Deepen your relationships there. Lean in to life.

Life is precious. Live every drop you're given.

With my love and respect,

Julie

Stage 3, many WLEs, 2 SNBs, LND, HD-INF, GM-CSF = NED 5 years!

Stage 3  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017) 2017 Non-small cell lung cancer VATs

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Julie in SoCal's picture
Replies 5
Last reply 1/9/2013 - 10:24pm

Good Morning Friends,

Yesterday I had my annual scans, and although the scanxiety was through the roof the results were worth it.  I remain NED.  Over the last 5 years I have read, and laughed and cried with folks here, I just wanted to write and say that I'm still here.  I don't post much, but I wanted to share the good news and encourage everyone out there. 

5 years ago I didn't think I would make it this far. When I was diagnosed, I had just made a major career change and gone back to school for my PhD.  Needless to say Mel wasn't in my plans and after the surgeries and treatment it took me quite awhile to get my feet back under me (and my head screwed on right) so I could study. But here it is 5 years on. I continue to be NED and I should graduate in June

Friends, be gentle with yourself.  It take a while to adjust to all the new normals (how I hated that phrase a few years ago).  Lean in.  Lean into folks around you who love you.  You'll find them, although their identities may surprise you. And deepen your relationships with them.  Also lean into your faith.  Personally, I'm a follower of Jesus, and I have found that this has sustained and upheld and sometimes carried me kicking and screaming.  But it has now been tested by Mel, and I have found God is so much bigger.  But whatever your faith is, lean in.    Deepen your relationships there. 

Life is precious.  Live every drop you're given.

With my love and respect,

Julie

Stage 3, many WLEs, 2 SNBs, LND, HD-INF, GM-CSF = NED 5 years!

Stage 3  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017) 2017 Non-small cell lung cancer VATs

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Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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Hello, my dad concluded with IPI in 10/2011 and has since been showing regression followed by total remission 2 months ago. His scan today showed the 2 tumors in his adrenal glands grew by 1/2 inch and he has one new one on his lymph node near the adreanal gland. He needs to have an MRI asap which hopefullly shows nothing new. If it does not show anything new he is eligible for the PD1 trial. If not it's either IL-2 or IPI again. Has anyone been thru this:????

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If you TWITTER, there are several Melanoma Research and Foundations accts. on there to follow.   Lots of good info and tweets.   The latest of the latest.

Just sharing......

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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chalknpens's picture
Replies 3
Last reply 1/9/2013 - 3:12pm
Replies by: chalknpens, NYKaren, Swanee

Well, my three month follow-up in October was pretty good, with only a few spots on my face treated with cryosurgery. The six month followup today had a larger yield - five cryosurgery sites treated on my forehead, but also two biopsies done as well. One was the largest bump on my forehead, and the other was on the bridge of my nose. The biopsy results will not be received by the dermatologist 'til the end of this week, but I have an appointment with the skin surgeon early next week for a post-surgery check, and so if the biopsies show more cancer, I'm sure he'll deal with it then.

I moved my dermatology six month follow up earlier by four days because I was concerned about a few new moles at the site of the melanoma surgery scar (the "mark of Zorro" on my back.) I told him I was feeling a bit vulnerable, and he said not to worry about coming in sooner ... because, he said, you've had all three types of skin cancer and surgery for each in just the past six months. Basal, Squamous, and Melanoma ... all different sites, and multiple sites. You have reason to look carefully and come in when you're worried. The mole on my back was not cancer, which was the good news for the day.

I am not perfect, but I am enough.

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jennbe9's picture
Replies 7
Last reply 1/9/2013 - 1:41pm
Replies by: jennbe9, vivian, Anonymous, Reneezd

Has anyone had a melanoma in transit removed after a full lyph node dissection? If so , did you have to have a drainage tube?

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Erinmay22's picture
Replies 6
Last reply 1/8/2013 - 11:59pm

I've been a patient at Sloan for over 2 years.  Tomorrow I meet with one of the trial doctors to find out about starting the anti-pd1 trial.  I finished my last dose of ipi Nov 27th.  Scans Dec 18th showed a lymph node still growing (I had surgery Oct 4th to remove part of my small intestine but they couldn't get this node).  

I did Zelboraf May-Sept and Ipi Sept-Nov.  Just wondering what questions I should be asking when I go in?  How soon do you think they would start the trial?  I know there is generally paperwork to fill out and blood work and scans.  I did just have a Brain MRI Dec 7th (which was clear) and CT scans Dec 18th - so hopefully those are within the window and I don't have to have them again so quickly!  

Also, anyone out there currently in Sloan's trial?  Thoughts/Comments?

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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NYKaren's picture
Replies 20
Last reply 1/8/2013 - 6:37pm

Hit everyone,
After 17 days on Zelboraf, I am doing well. I saw Dr. Wolchok this past Thursday. As soon as he walked in the room, he said "wow"!
Since my mets are mostly on my face, it's easy to see noticeable regression/flattening of mets. And the several scalp mets that were (for the first time in 2 yrs.) big enough to light up on PET, are all completely flat. On some, the pigment even disappeared. He said the pigment might not all disappear on my face, even if the Mel completely resolved. I can feel that the Mel in my ear has gotten much smaller and I can hear out of it. Must see the ENT to confirm/see what's left.
As for side effects, I'm getting numerous skin tags or small warts around eyes and just found a big one behind my knee today. Some leg pain and mild fatigue. I did start taking Benfotiamine after reading Snickers' recommendation, who knows' maybe that's helping. I told them that I have to get rid of my "Yervoy mentality" that says that side-effects = response. He laughed but for those of you on ippy did say that they're revisiting that theory.
I asked him at what stage in past 2 years did he think I went from BRAF - to positive, and he THINKS it's more likely it was a false negative...they might have tested healthy tissue-- but really, who knows? Who cares??
I know I might develop worse side effects but for now I'm feeling surprisingly good.

My thyroid FNA was negative! (And yes, when they stuck the needle in twice and wiggled it around, it hurt).

Al, I hope I'm following in your footsteps!
Love to you all,
Karen

Don't Stop Believing

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bigb0624's picture
Replies 1
Last reply 1/8/2013 - 6:28pm
Replies by: Tina D

To Whom It May Concern:This is to everyone that this applies to.

 

I would like to know how long you were on Z before your doctor had you switch to IPPI.  Were you still getting positive results from Z when you switched?

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Alan Muir's picture
Replies 8
Last reply 1/8/2013 - 5:34pm

It's been over 3 years since Stephanie passed away.  I now have a new girlfriend.  Her daughter, age 26, was diagnosed with melanoma late last year.  It appears that she is stage III, as a few mm cells were found in her sentinal node.  Her onc is recommending LND and Interferon.  She's being treated at Bay State hospital in Springfield, MA.

Of course, my girlfriend is worried sick.  I'll do what I can for her and for her daughter.

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Kimberly Duncan Watts's picture
Replies 6
Last reply 1/8/2013 - 11:39am

Hey friends, I had scans today and want seafood tonight...anything that says I shouldn't? My scans were traumatic today. The power port put in last April after my surgery has always been questionable, but today we tried for two hours to get a blood draw. No go. And I have fragile veins that got blown three times...almost had to have scans without contrast, but finally got a vein. I liked my first port better that was put in 2008. I criied a lot. The stress of my port is now greater than the melanoma.... Any words of wisdom are appreciated.

I can do all things through Christ who strengthens me.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/8/2013 - 10:44am
Replies by: Anonymous

Is this a bad prognostic characteristic on a path report for a melanoma less than 1mm?  Or is it only bad if it's extensive/complete regression? 

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