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.

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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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dleonard's picture
Replies 0

Has anyone here tried Sylatron?

I have one spot left in our study--We would very much like to interview you, on the phone, for about 45 minutes.  I can offer to you $100, as a thank-you for your participation. 

Please call me (212.289.0087) or email me (pfcresearch@verizon.net), IMMEDIATELY, so that we can set up an interview with you, this week.

I promise that this is not a sales presentation, of any sort--strictly medical opinion research.

Warm regards,

David Leonard

Director

pfc Opinion Research

New York, NY

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Has anyone here opted out of any post-surgical, adjuvant, therapy?

I have two spots left in our study--We would very much like to interview you, on the phone, for about 45 minutes.  I can offer to you $100, as a thank-you for your participation. 

Please call me (212.289.0087) or email me (pfcresearch@verizon.net), IMMEDIATELY, so that we can set up an interview with you, this week.

I promise that this is not a sales presentation, of any sort--strictly medical opinion research.

Warm regards,

David Leonard

Director

pfc Opinion Research

New York, NY

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Reneezd's picture
Replies 4
Last reply 1/8/2013 - 1:03am

Hello,

Does anyone know what amount of the water soluable Thiamin is recommended by Dr. Oz?

Any good ideas on treatment of Zelbraf rash?  

Still feeling a little overwhelmed by the nurse saying that Matt will be on the the PX866/Zelbraf until it stops working.  I guess I was hoping it would put him into remission.  I am reading posts now to find if anyone has had better luck with going off meds altogether after a certain therapy?  Any other homeopathic remedies?  Matt's melanoma is stage 3 and the doctors say it is "in his blood", not sure what that means.  He had a lump on his face that already dissappeared with the clinical trial meds and there were 2 spots on his lungs that were too small to biopsy which was the reason for doing the clinical trial and not the radiation they had initially prescribed.

Thank you,

Renee

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awillett1991's picture
Replies 13
Last reply 1/7/2013 - 7:03am

Her last update was
Dec 5th 2012 .. PET scan shows 2 1/2 X 3 1/2 cm tumor in abdomen and 2 small adjacent lymph nodes lit up. Removed from Zelboraf completely

Tina D has been in the hospital since Christmas Eve. She completed her first Ipi infusion but had started with some tummy trouble beforehand which has escalated to high temp, white counts, terrible abdominal pains and so far lots of tests with no answers.

I believe she is set for another scan today with contrast then possibly exploratory surgery. Please say a prayer for her so she can get home to her sweet family. She has been such a brave warrior for many many years and her family needs her!!

Amy

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POW's picture
Replies 9
Last reply 1/7/2013 - 2:08am

MRI and CT scans in early December showed that all of my brother's mets, including his brain mets, were stable except for one lung met which increased from 3 cm to 4 cm. His oncologist felt that the melanoma was becoming resistant to Zelboraf so he took him off Z for 30 days to prepare for either ipi or a clinical trial. Three weeks later, I noticed my brother was again experiencing speech aphasia and mental confusion and I worried that the brain tumors were coming back. Sure enough, they are. My brother had a brain scan at Moffitt yesterday to prepare for the LGX818 clinical trial. They found 6 brain mets-- 2 old ones growing and 4 new ones. They are located all over his brain. So clinical trials are out. Damn!

My brother still wants to try ipi at the VA. He is supposed to start that next week. But given how fast his melanoma is progressing now, we're all feeling frightened and discouraged. 

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lunchlady's picture
Replies 13
Last reply 1/6/2013 - 10:33pm

Can anyone tell me what their experience is regarding the cost of a consultation appointment at MD Anderson?  My husbands insurance will not normally cover any services outside of Kansas.  I worked with his insurance and they granted a "Benefit Exception" for one appointment so he can consult a melanoma specialist at MD Anderson for a second opinion.  I was told by the agent that was attempting to set up the appointment that one consultation appointment cost $40,000!  With his insurance we would have to pay $4,000.  Any info anyone can give me is appreciated.

One day at a time.

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