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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flvermonter's picture
Replies 2
Last reply 6/30/2013 - 3:47pm
Replies by: flvermonter, kylez

Hello again,

we had great news on the lung cancer once radiation..only 5 SMS radiation treatments. meet with melanoma once this wed. for plan of radiation.

however, his left arm was so swollen and now with the compression sleeve is sost back to normal. the swelling in his legs we went yo our MD. he did ekh and was OK. the blood work came back with indication of Cong heart failure. we need to meet with the MD. will that stop his radiation? he doesn't want to tell Moffitt afraid he wont get the treatment. I am so afraid and stressed.

Hugs to all, patients and care givers.

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pamkepler's picture
Replies 1
Last reply 7/2/2013 - 3:38pm
Replies by: 5374brian

My husband has been diagnosed with metastatic melanoma oct 2012. He has been on Yervoy, Zelboraf, and now anti pd1. I was looking for caregivers of patients that are on this same journey:) Blessings to those fighting patients and caregivers!!!

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Anonymous's picture
Replies 5
Last reply 7/1/2013 - 11:09am
Replies by: awillett1991, Anonymous

Sorry to be anon here, just scared. Recent MRI showed a new 5mm met near the outside area of my brain which had grown from 3mm on prior scan 2 mo ago to 5mm. I was "stable" to get Into the trial - as in they didn't notice it. Dr says as long as they don't treat it, I am still in the trial. is this really right? Oncologist not worried about it and rad onc says location is "good" he is fine w watch & wait as it seems to be growing very slowly. MRI states

There is a 3rd enhancing lesion in the left parasagittal parietal lobe which measures 5 mm (previously measuring 3 mm).

Very nervous abt this whole thing. Sounds nuts not to treat but need the trial.. also though, have other life threatening areas much bigger, inoperable, and more important and desperate for this PD1 to work having run thru the usual suspect drugs. Not very far into the trial - only a few doses.

Any advice?

THX!!

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Jamietk's picture
Replies 2
Last reply 6/29/2013 - 9:15pm
Replies by: BrianP, Jamietk

Wish I could be here only to drop in and say hello and send well wishes to everyone. Instead, I am here with concern and would be very grateful for any experiences you could share. Brief history: In August it will be 8 years since I had my melanoma removed. It was barely stage IIA, 2.1mm, on my right arm. No lymph nodes involved. I am seen at MDA annually. Recently, I have been having some issues. I was diagnosed a few weeks ago with severe anemia. Some bloodwork has been run that tells us it is less likely to be vitamin deficiency or bone marrow/blood disorders, and more likely due to bleeding (which is typically from heavy menstrual cycles, ulcers/aspirin, or tumors/cancer, specifically colon cancer). Now here's the deal, I do have extremely heavy menstrual cycles and started on high dose aspirin a year ago to reduce heart and stroke risks. The only symptoms I've developed in the last few months is nerve issues. my entire left side of my body gets electrical shocks and a heaviness, as well as numbness in my face. I've been hospitalized after one of these nerve "attacks" and ruled out stroke and heart attack. Had MRI of brain and echo on heart. Still having the frequent nerve issues, to the point where I can sit here and feel the electrical shock go through the left side of my body and make my toes move.I feel it under my arm, left lower forearm, left elbow, left side of calf, toes, and pinky finger. And I am EXTREMELY fatigued from the anemia. My blood levels are less than half what they should be. My primary Dr. is sending me to a G.I. next week. The only real G.I. issue I notice is lately I've felt like my liver is having spasms, and yet the left side of my abdomen looks a little larger to me. I am overweight though so its hard to tell.  My Cardio agrees with this plan. They both say if nothing is found with G.I. workup then I'll be sent to a hematologist. I am also scheduled with f/u w/ neurologist in July to do some nerve tests. And I am supposed to start getting physical therapy because the strength on the left side of my body is diminished and I have balance issues. So I am trying very hard to convince myself that the anemia is a combination of not enough iron (I don't eat much red meat), heavy cycles, and the recent addition of high dose aspirin. And I'm trying to convince myself that the nerve issues are from a pinched nerve. And I'm trying to convince myself the liver sensations are from enlarged liver maybe from gaining weight. And any one of those alone is easy to convince myself. But one common cause of all of these symptoms could be cancer/tumor so of course that's where my mind is going since they all started about the same time, 3 months ago.

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ecc26's picture
Replies 6
Last reply 6/30/2013 - 10:42pm
Replies by: Phil S, ecc26, DeniseK

Hello, 

Nearly finished (1 day left) with a 3 week course of WBR and mostly doing just fine, but over the last 4-5 days my ear canals have gotten sore. I'm aware that this is not uncommon for a side effect, but I'm wondering if there's anything I can do to help ease the discomfort- especially at night since it does keep me awake some. I know that some advocate ear rinses, etc but my understanding of those is that they help clear debris, not relieve discomfort. Any suggestions from those who have done WBR?

Thanks

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I just found out a week ago that Scott's life insurance policy has an accelerated benefit.  You can take half of the policy money up front and then the remaining half is paid out to your beneficiary upon your death.  I thought I'd share the info because I ran into it on a whim and would have never known.  No social worker, HR person or otherwise had mentioned it.  It appears that most policies have this.  If you are interested, find your policy and read up.  

The money could be a great help for travel to trials, paying cobra or whatever, you can even take a vacation.  They don't care what you do with it. It's required that your physician state that you have 12 months or less to live.  But there is no pay back required if you don't die. 

Just thought I'd let everyone know and hopefully it can help someone else out. 

Lisa (Scott's wife)

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mama1960's picture
Replies 7
Last reply 6/29/2013 - 7:42pm

Ok, lots of narcotics involved just typed for 15 min and managed not to post a word! Mel moved to bones 2-3 months ago. 3 fractures, both upper arms, right groin, just from bone thinning.LOTS is pain. hit the wall about 12 days ago. Doc put me in hospital. New bone scan 4 weeks into Zelboraf showed lots of new tumors in ribs, so stopped that. Did a 3 drug chemo mix for a quick knockdown, hopefully. Can't name them, doc said they came up with it at MD Anderson. Waiting for insurance to approve moving to rehab to get me on my feet and home. Then, Temodar? Can't remember for sure. Don't know if I will be back to work in 2 weeks, 2 months, or ever! How so we deal with all of this?

It is what it is.

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SarahW's picture
Replies 4
Last reply 6/28/2013 - 6:20pm
Replies by: Brendan, SarahW, DeniseK

Hi all,

My husband's SRS for 3 brain mets in the frontal lobe(the largest is 2.6mm-however there were none 8 weeks earlier) has been scheduled for July 3 @ Moffitt. I gave him a list of questions to ask the Radiation Oncologist. He wouldn't let me come to the appointment. I got some answers, but not quite as much information as I would have liked. The radiation oncologist advised him that I will need to drive him, which of course I was planning to do

To the question of whether he would need to be placed on anti-seizure medication and/or steroids, the answer was "It depends on how he does post-procedure."  So I guess I should be prepared for anything?

Thank you to those who replied to my earlier post. Any other thoughts?

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NYKaren's picture
Replies 15
Last reply 6/28/2013 - 12:34pm

First, thank you to all who responded to my post yesterday. I was deeply shaken and upset but once again, it's time to pull up the bootstraps and move on.
My husband and I met Dr. Greg Kondziolka today and liked him a lot. He showed us the scans and asked me how my hearing is in my right ear. When he showed me how much Mel is in the ear...it basically blocks everything. That was as scary as the brain mets.

It's kind of interesting that one of the larger brain tumors is dangerously close to the area that affect my speech. If I hadn't insisted on stopping Zel for the PD1 trial, I wouldn't have had the MRI, and I'd be talking oddly or not at all pretty soon.

As I said, we liked the doc a lot... He was one of the builders of the gamma Knife system. The best thing about him is that he believes in sedation. (Well, one of the best.)
NYU's Gamma Knife machine was damaged during Sandy, so he does the procedure at 3 tri-state hospitals that have the exact same machine.
We'll be going to South Nassau Hospital, about 15 minutes from our house, which is good when you have to be there at 5:30 am.

Also, yes the GSK trial does require 2 months out from treatment for brain mets, so I'm lucky to be going for Merck's version.

So, onward and upward, and I'll let you know how it goes Tuesday.
Karen

Don't Stop Believing

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KnowThyself's picture
Replies 7
Last reply 6/28/2013 - 11:41am
Replies by: Janner, KnowThyself, becky15

So the lesion is on my upper ear helix...I've had a biopsy, excision, WLE, and now they want to take more because the margins are not clean... however, the path report seems to contradict itself, here's the meat of it:
"Severly atypical dermal and epidermal melanocytic priliferation present at tissue edges...the lesion is histologically difficult and borderline in nature. Although a benign lesion is favored, we are not able to exclude malignant melanoma. The differential diagnosis includes a .8mm deep, nonulcerated, malignant melanoma stage pt1a, with no mitotic activity.. re-excision along with margin of uninvolved skin recommended....
So basically, id like to know if its benign, or malignant...and why they wouldn't be able to tell the difference...I don't want to have more done if its not needed, seems how this time a skin graft won't be able to cut it, he said it'll have to be larger, and get into plastic surgery..... I don't know what to do, I don't want to leave it alone if there are cancerous cells, if they ARE in fact cancerous...but no one seems to know! And with no insurance, and a low tolerance for pain, I need a better answer than 'borderline'....

Help!?!?!?!?

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Tina D's picture
Replies 17
Last reply 7/9/2013 - 9:45am

Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi. I am still on 5 mg prednisone, and that is not a problem, but they have to decide if the dosages, and tapering, fit in with the strict trial guidelines. I have not been able to be on here much due to ongoing set-backs from my husband's back surgery, but will try to post after my visit to TN. Still feeling wonderful and am SO thankful to be here to celebrate our youngest child's 14th birthday today! She was 2 years old when I was first diagnosed with both breast cancer and melanoma within 6 weeks of each other. Yes...I am very blessed to still be here and be able to kiss her sweet cheek this morning and wish her a happy birthday :-)

Tina

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I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

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I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

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Brendan's picture
Replies 7
Last reply 6/27/2013 - 8:38pm

Hi Everyone,

Craniotomy #2 was a success and I am NED again.  The surgeon left six chemo wafers in the cavity and my CT was clear (sorry if I posted this already-I am on some serious decadron).  Surgery was on Tues at 7am.  I fell great and I am possibly going home tomorrow.

Thanks for all your support.

Good luck!

Brendan

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joy_'s picture
Replies 3
Last reply 6/28/2013 - 10:56am
Replies by: joy_, benp, Gene_S

Hi everyone.  I have read a few previous posts about ALC and positive immune response with Yervoy.  My husband just had his 3rd infusion (10mg/kg), and I was looking back at his labs... It appears to me that he may be having a positive response.  Can anyone give me your take on these numbers and tell me if this would be a fair assessment?

ALC

1.3 (three months prior to Yervoy)

1.6 (day of first infusion - 2 weeks off Zelboraf)

2.7 (day of second infusion)

2.5 (day of third infusion)

 

Also, I was wondering about the C Reactive Protein number.  Any correlation between that and response?

His number of immature granulocytes is up as well.  Is this indicative of anything? 

I would love to know that his labs may show possible good signs because it has been a little difficult to see new subqs while on this treatment.  As always, thanks to anyone willing to share your insight or experience!

Tracy

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