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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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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Replies by: fairlinda, kylez, AllyNTAus, DeniseK, Anonymous

Bill was only diagnosed on 4-1-13.  Maybe 5 brain tumors, one lymph gland, lungs.  Did WBR to no avail.  Started Yervoy.  Because of a fall at home, another CT done on 5/2 and not only were there new tumors but the first ones had grown.  Doc said he wouldnt live to benefit from Yervoy so we switched to the faster acting Zelboraf.  Just finished our first month and nothing is better.  The new tumor(s) caused his left side to not cooperate at all. He still has strength, it just can't get a signal.  Now his right side is showing signs of weakness.  I am still trying to maintain him at home but transfers have become challenging at best.  Anyone have improvement after a month while matters seemed to be worsening?  I'm so looking for hope.

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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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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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Owl's picture
Replies 4
Last reply 6/28/2013 - 6:42am

Hello everybody,

just wanted to share some good news with you. My husband has its 6 months on Zelboraf tomorrow and scans from last week show that it is still working. Tumors are smaller or gone. We are so thankful, it is very precious and we hope that it will continue. He feels very good most of the time, side effects come and go, but are manageable.

All the best,

Jenny

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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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mertsal61's picture
Replies 2
Last reply 6/27/2013 - 4:00pm
Replies by: mertsal61, POW

hi , i found this website while searching this disease.I want to talk about my dad.He is 53 years.His lung all covered small something lentil and he has oxygen problem(Sa02).He is always using oxygen(15 liter per hour).We live in Turkey.He is always coughing since February.Then he decided to go hospital.After some examination nothing found.Then he went on PET-CT but PET-CT's results are clean.Then doctors decided to lung biopsy for diagnostics.My dad had an surgery , they took small part from his lung.After the pathology report, it says malign melanoma.But my dad went too bad after surgery.His Sa02 about 88-92 with mask but theese value decreasing fastly without oxygen.Therefore after surgery infection was detected his left lung(after 2 days later surgery).Now he is taking antibiotics for infection also his breathing went so badly. And his lung all covered small lesions so he has seriously breathe problem.I heared yervoy and zelboraf drugs but they are too expensive.Guys, please understand me.I tried of crying and doing nothing.What can i do?Help me, i begging you.

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bikerwifee's picture
Replies 9
Last reply 6/27/2013 - 10:07am

Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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jP85's picture
Replies 5
Last reply 6/27/2013 - 10:04am

I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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aldakota22's picture
Replies 16
Last reply 6/27/2013 - 10:00am

Had visit with Dr. Anna Pavlick yesterday and got results of Cat Scans & MRI  from 6/15/13.On the plus side Iron count is back to normal after being on the low side early this year.Just had to  take iron supplement..Also gained 4 pounds .First time in over 2 years after remaining at same weight.Appetite has always been great.All in all the results were awesome."Z" has been doing its job for the most part as there is no evidence of disease from the head down.Still have a few brain mets with the largest being  1.2 x 1.1  x  0.4  cm. All others are substancially smaller and measured in mm.They all remain stable when compared to MRI of  2/20/13 and  4/13/13. No new ones from MRI of Feb. 2013.Will have MRI again in two months. As i have no problems stemming from these mets she is of the opinion that this is something I can actually live with.Feels that any  Gamma knife treatment at this point is not reccomended.Still taking "Z" for over 21 months.Plan  B if needed will be to switch to Dabrafenib expected to be available the first week of July.Known to  work as a effective a "Z" to long time users as myself.Want everyone to know out there that after what felt like a Death Sentence  in early 2011, now feels  with God  & modern medicine I now have a Life Sentence.To all my fellow warriors in our unwanted battle with melanoma do everything you can to Beat the Beast..The research is advancing toward a cure or at least a treatment as a chronic condition.Life is good.Keeping all my fellow warriors in my prayers.Looking forward when all posts here will be ones of hope and happiness.I feel my good results have been cause of God, modern medicine, my PMA and of course the love and support of my honey and family. Also know that all here are wishing me well also. Thank you.      Al

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Snickers60's picture
Replies 3
Last reply 6/27/2013 - 9:55am
Replies by: Tina D, Owl, aldakota22

Hello - long time no talk..............   

I wanted to give you a quick update on Wayne  - especially for those on ZEL ! 

Last Thursday was a devastating day for Wayne and me.   We learned that while Zel is still working great on his body - (still clean one year later) - he had 2 brain mets and a meningioma (benign)    They will be doing Gamma Knife next Friday - the 28th at MDA !    To say that learning this news the day before Wayne's one year NED mark was hard is an understatement.   As many of you know, learning you have brain mets is a different and devastating kind of animal.  However, we are beginning to get our berrings, put our gloves back on, and FIGHT this beast like never before.  We head back next Thursday for the surgery.  

We were planning on going out to dinner THAT night to celebrate the ONE YEAR NED MARK !    :-((((((   How sad is that.......yes, it was SAD !   I cried my eyeballs out for days instead. 

They are talking about possibly trying him on Temodar, WITH the ZEL, after the Gamma Knife.

All prayers would be much appreciated.

Nancy (devoted wife of 3 X Warrior Wayne) 

We are anxious to hear from Dick_K ?    Anyone heard from him lately ?   

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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mama1960's picture
Replies 2
Last reply 6/27/2013 - 9:51am
Replies by: Tina D, POW

Bone scan a month ago showed mets in bone. Started Zelbroff. Have had fractures in both arms and right groin. Doc says cancer is too far ahead to count on Zel. Had another bone scan Tuesday, lots more mets. Going on five days of intense chemo here in the hospital starting tomorrow. Drugs are Velban, DTIC, and Platinol. Says it was created at MD Anderson. Anyone with experience?

It is what it is.

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Richard_K's picture
Replies 7
Last reply 6/27/2013 - 9:48am

Apologies for being absent for the past month, I had serious computer and e-mail problems.  As to Zelboraf, I’m still on it and closing in on forty months.  Only real problems are sun sensitivity and some discomfort in left leg and foot.  Bilirubin goes up and down but if I am sure to keep hydrated, it seems to be under control.

My wife and I just returned from Barcelona Spain where I was invited to speak about my Zelboraf experience at the Roche Global Research and Early Development conference; quite a thrill.

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Replies by: Tina D, LindaR, Anonymous, Linny, DeniseK

Just this week I was diagnosed with amelanotic melanoma. All I know right now is that my tumor is 1.15 with no clean margins and a level 4. I am expecting to have surgery this week. As I try to wrap my mind around all of this, the information online is overwhelming. I just found this site and already it is helpful. The tumor is on my face near my ear. The plastic surgeon has told me part of my ear will need to be removed. This is so hard. Can anyone help me understand if amelanotic melanoma is more aggressive than other types? Has anyone had surgery on their face? Of course, I am afraid of how my face will look after surgery but mostly afraid of what the SLB will show. This is the first time I have ever posted on any site and it feel strange.

Linda

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