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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AllyNTAus's picture
Replies 6
Last reply 2/15/2013 - 7:41am

Hi everyone,

I've been going pretty well on the GSK BRAF inhibitor since I started on it 1 May 2012, all existing enlarged lymph nodes shrunk dramatically and stayed that way, lungs cleared up, no new things cropping up until now. My CT in Nov 12 showed a 7mm focal lesion in the fundus of the gallbladder. By my next CT on 9 Jan 13, it had increased to 15mm. I had an ultrasound today, and while I don't have the report, it is quite obvious to me from looking at the film that the lesion is now quite large, and looks a bit like a tree with several branches coming off it.

I have no symptoms at all, feel otherwise very well, and my melanoma oncologist has remained happy with my response to the BRAF inhibitor.

I have an appointment to see my local oncologist in the morning, but I am expecting bad news. I have read some articles that indicate metastisis to the gallbladder is fairly common, and if contained there, can respond reasonably well to surgical resection. I am happy to get rid of my gallbladder if necessary!

So I was just wondering whether anyone else had experience with a met to the gallbladder.

Hoping all of you are keeping well,

Allison

A bad day's fishing beats a good day's work everytime

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JoshF's picture
Replies 8
Last reply 2/15/2013 - 7:06am

Hello Fellow Warriors!

I had a quick question on staging but first let me give you a little background for those not familiar.

Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist....PET/CT....negative

May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary...thinks it could be primary dermal melanoma....a rare subtype. No further treatment advised.

Nov 2011- Feeling uncomfortable...find another melanoma specialist. Wants more aggressive scans....3 months vs 6 months. Finds my case unique but figures I fit more into stage III or IV.

Very confused as you want to believe it was primary but what to fo. Lots of advice....very differing opinions oddly enough from friends who are doctors (university medical vs. private). Whatever I just want to whip this so I continue seeing both but opt for aggressive follow up doing scans every 3 months.

This leads me to my staging question....I have order for scan and see that for diagnosis it says Stage X, pt3a. I have no clue what this means and where I fit in to "staging guidelines". I really hate being an oddball but I have been blessed considering what others are going through or have been through. I visit often as I appreciate the wisdom and logic that is shared on this site. I know scanziety is building (scan is Feb 22nd) and I always keep waiting for shoe to drop. Try to stay positive but nerves do get best of me.

Wisihing you all the best and hoping to hear great things about new treatments on the horizon. My doctors say there are some great advances happening and new treatments aren't far off!!!

 

Josh 

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chiaraj77's picture
Replies 1
Last reply 2/15/2013 - 3:31am
Replies by: DeniseK

I have had several basal cells removed and my doctor (have actually only seen the NP) is very laid back and all about wait and see. My insurance just switched and I would love to find a better practice to go to.  I am looking for a doctor in Pleasanton, Danville, Walnut Creek, etc.  Thank you so much. 

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dian in spokane's picture
Replies 7
Last reply 2/15/2013 - 1:46am
Replies by: Napa K, Anonymous, dian in spokane

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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Kim K's picture
Replies 4
Last reply 2/14/2013 - 9:20pm
Replies by: Bobman, cld, Janner

I am logged in, was working yesterday, and today all I get is a blank pop up with user as couple and I can't click on any buttons to fix it.....  I logged out then relogged in, made sure my pop up blocker was disabled.  HOW VERY FRUSTRATING!!!

Waving at Carole K & Libby......  Wish I could join you.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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gtown's picture
Replies 5
Last reply 2/14/2013 - 8:22pm

Just had a chest x -ray which came out clear but while waiting for the results my brain started going into overdrive. Is there a place where I can find the survival rates of people that have nodular melanoma only? If my lesion started as a open ulcer and then closed up could this be construed as an ulcerated lesion? The biopsy results said that it wasn't ulcerated. How do they determine an ulcerated lesion? My doctors secretary said it was done microscopically. ( I been trying to connect with my doctor but we're playing phone tag )  Can anyone point me to a website for a diet for this disease?

My SNB came back clear in May of 2011 has anyone had the disease progress to other parts of the body with a clear SNB? Just give me the truth and I'll deal with it.

Thanks in advance

Gtown

Nodular Melanoma 1.9 mm on shoulder diagnosed 4/ 2011  Taken out at U of P hospital 5/2011

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dolphin5's picture
Replies 1
Last reply 2/14/2013 - 6:56pm
Replies by: kylez

As I said on my prior post the decision was made to go with interferion, interlukin and three others with Dr Gailani at Kaiser riverside.  Two additional test were ordered prior to being admitted next week for her first stay/treatment.   Pulminary and stress test for the heart.  I know we asked why these two test but neither my wife or I can remember and I did take notes.  And finally as a care giver what can I expect or should I be prepared for when we return home?  I know someone has an answer.  Once again we want to thank for all of you help. 

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dian in spokane's picture
Replies 5
Last reply 2/14/2013 - 5:23pm
Replies by: mbaelaporte, dian in spokane, Anonymous

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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HI Ef veryone,

I read below about all the difficulties getting into chat.  I am sorry I can't help. I am computer challenged.  Let me see if I can get in touch with the gentleman who did the website. 

I can't tell you how much I have learned in the past two nights from all of you who conisder yourselves newbies.  So much has changed witih Melanoma and boy do I need to educate myself on all the new treatments. 

Last nighti it was a pleassure to meet Kyle, John F, Margo, Becky Doro, alcijado  and so many more.  Please come and join us.  JUst so you know you can just go t into chat at any time.  Post you will be there. 

Chat and the board were my saving grace going through LUng and Brain Met.  I met incredible peopel filled with love and understanding , not to mention Knowledge.  Thre were times I would leave chat crying, not because I was blue or hurt . I was crying for all of the blessings this BEAST brought me. 

Each and everyone of us have different stories and oh how we can learn from each other,

PLEASE WHEN YOU COME INTO CHAT , everyone will probably say hello . IF I am there I will ask everyone to stop for a few minutes to give you a chance to ask questions.  Often times the subject is NOT Melanoma, and at times it is almost social media where people go to laugh.  Please do not be offended. Many of us have met and have known each othere  for many many years,  It is a wonderful ommunity of support

Yes, there will be some old timers there as well.  At one time I organized get togethers in Asheville Orlando, Michigan and others organized them in Dallas and a few other places.  My goal is to try to do this again.  Charlie S wants a get together out where I live on Long Island.  That would be nice but hotels are too expensive.  We shall see. I am suggesting California and Janner also suggested Las Vegas, which would be the least expensive place for everyone to get to. 

Please come join us and know WE ARE ALL IN THIS TOGETHER.  Hang Tough and as Young Trooper  Drew would always say.. IF GOD BRINGS YOU TO IT, HE WILL SEE YOU TO IT. 

Hope to see you tonight

LOVE AND LIGHT

Carole K

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Carole K's picture
Replies 6
Last reply 2/14/2013 - 3:10pm
Replies by: Janner, lou2, Phil S, kylez, NYKaren

HI Everyone,

Just wanted to remind you to come to chat toniht any time after 7 PM> EST.  We werer there last night until a little after midnight.  Come join us, ask questions, have a few laughs.  So many of us found incredible suppoet  in chat during our most diffcult times with the BEAST.  I promise we may even have a few laughs. It might help if you are feeling down.  Know we are here for you.  Hang tough..

Love and Light

Carole..  IT'S A BEAUTIFUL DAY... I OPENED MY EYES TODAY.  ..... Dr. Robert Frost

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Snickers60's picture
Replies 1
Last reply 2/14/2013 - 3:06pm
Replies by: Janner

Wayne and I know NO ONE in our area with Melanoma !   I was in Beauty Shop last week and meet "2 WOMEN" whose husbands are stage 4.  I almost fell out.   

One was BRAF positive and has a year NED under his belt.   The other was sent home 3 weeks ago after YERVOY to get his affairs in order.    She said he feels great and is not in pain or SICKLY.   

I told her to get those scans, records, etc. together and have her DOC get him to MDA IMMEDIATELY.     The Doc had told him there was NOTHING else for him.   I SAID:   there's always something else.   

Was I wrong ?    I mean there are still trials on ANTI- PDI and always something to TRY right ?     He has nine spots.....it started with a melanoma on his head.     He is 75 years old.  

I FELT SOOOO SORRY for her.   There sat me and the other lady with husbands NED for a year and Wayne at 7 months now.    This stuff is SOOO IFFY ! SO STRANGE, but I did not want to leave her with NO HOPE !    Told her these Docs around here will let him die and even if there's nothing else to do at all, she will have the peace that they did EVERYTHING humanely possible to get help.  

What a sad and at the same time - ENCOURAGING encounter.     Sad with one, encouraging with the other.   SOOO sad for the one woman who is preparing for her hubby to die.  

HATE MELANOMA - JUST HATE IT !!!!!!!!!

BTWAY - Wayne is on his way to MDA NOW !    I was unable to go because of knee surgery, but praying hubby gets good report.   This is kinda just a check back - no big test !!!    

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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casagrayson's picture
Replies 9
Last reply 2/14/2013 - 12:30pm

 

My husband is the melanoma patient.  He's had two primaries on his head (one on his scalp, the other on his jawline).  Both were Stage 1.  In the past six months, he has had many precancerous lesions frozen, plus three basal cell cancers (all requiring Mohs surgery and two considered abnormal basal cell) and one squamous cell.  Last week he had three more biopsies.  We've switched dermatologists because we didn't think his previous one was very thorough in body checks, plus he wouldn't answer questions to our satisfaction.   Here's the latest issue.  Last week I pointed out a red irritated spot on my husband's neck.  I told the derm that this spot never goes away and flares up from time to time.  Not long ago it almost got the appearance of a boil, but then went away (leaving just the red mark for the derm to see).  The derm just acted like it was a little irritation and not to worry.  Well, today the "boil" is back.  Does melanoma ever present this way?  I guess I'm specifically worried about a melanoma in transit or some sort of metasticizing, especially since it is on his neck near his lymph glands.  My husband is so tired of being poked, prodded, and being worried about biopsies that I don't think I'm going to be able to convince him to go back to the doctor while the "boil" is present to have him look at it.  (He will say "the doc didn't seem concerned".  But as one who has been through years of struggling to get diagnosed with a rare disease ... Cushing's ... I know that we have to be our own advocates with these doctors.)  

Am I just working myself into a frenzy for no reason?

Strength and Courage,

Susan

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bikerwife's picture
Replies 6
Last reply 2/14/2013 - 11:53am

the good time with z is over for us. no new tumors but ones he hss is growing.  ldh up to 537. no trial till finish with gamma knife. anti pd trails starts in march. so n the mean time its temador or abraxane.

FInd out Monday.

just shocking since HE seems to be doing so good 

What God leads u to he will. Lead you through

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Hstevens0072's picture
Replies 15
Last reply 2/13/2013 - 9:57pm

My most recent PET showed multiple bilateral lung nodules. I've had the biopsy and we are waiting for the results - I'm hoping it was dust bunnies on the scanner. Dr Ibrahim is having it tested for BRAF gene. If it is positive she is suggesting I participate in a Single Arm Open-label Phase II study of Vemurafenib followed by Ipilimumab. My question is this, should I try the IL-2 before attempting the study? After reading multiple reports it sounds like if you do Ipilimumab you can't then do INterluken but the reverse is not true. Any advice would be most welcome.

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Don (Stage IV) and I have decided on treatment at Dana Farber. He will finish radiation in 6 more treatments (to help alleviate debilitating pain in back and pelvis) and will also undergo cyberknife for brain lesion. He tested position for B-Raff, so the DFCI oncologist is recommending he start on Zelboraf as soon as he finishes the radiation. She says Zelboraf works fast, and he will stay on it as long as it continues to work. If and when it stops working, she says we will consider Yervoy (Ipi).

Would love to hear what your experiences have been if you've had similar treatments. His disease is widespread (along spine, adrenal gland, some lung nodules).

What kind of side effects should we expect from the Zelboraf? Would it be feasible for us to leave the Boston area to spend a few weeks in our condo in Florida, or should we stick close to DFCI?

Has anyone also had any experience with Zometa (for bones)? Don's pelvis has been compromised by the tumors, and they want him to have this drug for bone strength. A nasty potential side effect has to do with jaw necrosis, which is unstoppable if it starts, which can destroy the entire jaw.

Thank you all for your continued willingness to share your knowledge, experience, and love.

Janet

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