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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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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Ali's picture
Replies 16
Last reply 6/27/2013 - 9:45am

I regret not being active on the board for a while.  Good to see you guys still fighting hard.

One year ago today they found 25 tumors in my brain.  Lots more around the body.  I had just finished IL-2.  We did IPI and Temodar.  I only got one dose of IPI, due to colitis.  It cleared my brain by the 12 week scans.

My brain is still clean.  We found a few new, very small tumors this spring.  A couple near my adrenal gland continued to grow (even after we radiated them this January).  They started hurting.  Pain pills kind of hurting.  We found a PD-1 trial I qualified for (Moffitt just started one for those of us with dose-limiting, stage 3 toxicities from IPI).  Within days of my first dose I was off my pain pills and could feel a difference in my axilla tumors.

I had my third dose this week.  I feel great.  I feel so very lucky to still be be here and still be fighting this disease.  I am so grateful for the chance to try antiPD-1.  My prayer from the beginning was that I would be able to try everything.  To not let my kids wonder if something else would have worked.  It is always humbling to have a prayer answered.

I hope and pray for the best outcomes for my fellow warriors.  This has been a great year for melanoma research, let's see that translate into a good year for us with the disease as well!!  Keep up the good fight!

Ali

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mary in Rhode Island's picture
Replies 4
Last reply 6/27/2013 - 9:41am

Has anyone used an antibiotic with Zelboraf?  I was recently ill and needed an antibiotic. Evidently, with zelboraf there are many that are counterindicated>>>>>due to arrythemias of the heart or qt lenght. I ended up on doxycline.....it worked but I was partially deaf while I used it

What antibiotic have you been successful with while on Z.  I have been on Zelboraf.almost 2 yrs.  Last pet showed there might be a new issue. but that is another issue...thank you for any info.  Regards, Mary

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Greg - Kyles dad's picture
Replies 5
Last reply 6/27/2013 - 9:30am

I have not been on this board in some time - but always think of the daily struggles people go through with this beast.  Thought I would post something to give some hope.  Proud of my son working through his challenges.   http://hamptonroads.com/2013/06/chesapeake-weightlifter-rebounds-skin-cancer

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Gette's picture
Replies 1
Last reply 6/27/2013 - 9:25am
Replies by: Tina D

wow, this site cured me of insanity back in 2001. So happy to see it still going strong.

WLE & SNB in 2001.  Looking at a subdermal nasty black mole that is making me nervous.  OF COURSE I will be getting it removed within days & biopsied but a question for those who can offer some help: I was told that subdermal moles are usually not melanoma...is this typical? 

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DeniseK's picture
Replies 5
Last reply 6/27/2013 - 9:23am
Replies by: Tina D, kylez, Brendan, POW, DeniseK

It's me again.......I have a couple questions.  First off has anyone done Z with Ipi?  Right now I"m on full dose Z, there were worries that it stopped working but I've been on full dose now for just over a week and I can feel the sub q on my arm going back down.  I'm also feeling the other side effects, the bottom of my feet are killing me, slight nausea, but not as bad as before, and fatigue.  All of the side effects are just fine with me if it's working again.  I'd rather not talk about hospice right now.  Which really flares me up when I think about it.  My doctor seriously upset me, I'm considering about getting a new Onc, it's a difficult decision because he's been there since day 1. 

Anyway.....I'll be reducing Z back down to 1/2 dose the day I start Ipi.  Just wondering if anyone has done this combo and what to expect.

On another note I was out staining some deck wood yesterday for about 10-15 minutes.  The weather was total over cast, slight sprinkles of rain and I got sunburned!!  We need a protective bubble on Z.  Any help/advice on treating the burn would help too,  I'm coated in Aloe Vera but doesn't seem to help

Thank You

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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