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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Mom2Addy's picture
Replies 11
Last reply 6/24/2015 - 5:47pm
Replies by: JoshF, Anonymous, ecc26, BrianP, Kim K, Mom2Addy, arthurjedi007, Bennickliz

My husband had 4 rounds of Yervoy treatment and now he has progression in the way of additional subcutaneous nodules and a tumor in his stomach. One of the four potential treatments is IL-2. He had SRS in January for two brain mets so it wasn't an option before now. Has anyone else gone through IL-2? How many rounds? We were told he'd be hospitalized in ICU for a week with each treatment but wondering how bad the side effects can be, will he be able to resume activity the following week? How long did the side effects last. Thank you in advance!

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mwconklin's picture
Replies 2
Last reply 6/24/2015 - 5:31pm
Replies by: mwconklin, beans920

Hi, I have been stage 3 since 11/2012. I had scars from surgical drains on my left leg about 6" from the wide excision. They had long ago healed but in the last few months one of the scars has become dark, inflamed and what feels like a hard scab forming over it. Has anybody had this happen and do you think it is serious? Thanks for your input. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/24/2015 - 4:38pm
Replies by: yunielth, Anonymous

Anyone out there with stage 1b.  What treatment have u done and how often are u getting checked?  Is ulceration still relevant in stage 1b or is it all about mitosis?

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Replies by: Anonymous, cece, Janner, kfalkinburg, StevenK, MichaelFL

Hi All...I was diagnosed with stage 1B melanoma in January of 2009.  Small mole on my left should that I had my entire life that one day went from brown to black.  Had local wide excision with sentinel node biopsy done on two sentinel nodes.  Everthing was clear and I was staged at 1B based on depth.  All tests and surgery were done at CINJ (New Brunswick, Dr Lee).  My follow up treatment is very simple (which has me concerned).  I now get blood work and a chest xray twice a year at 2 years out.  For the first two years it was done at every 3 months.  Here is where my concern comes in...my father had a mole in almost the exact same place 8 years prior.  Cancer free until October 2010 when it returned to his left lung.  Once again cleared through his PET scan on Jan 29 2011.  April 28, 2011...melanoma returned with a vengeance going to remaining lung, liver, brain and bones.  In light of the family history I am concerned that the cancer will come back.  My father's oncologists have all said "it is the silent cancer"...hiding until one day it just comes back and there really is no detecting it before it comes back.  I currently go to Fox Chase in Philadelphia for my follow up care because CINJ wasn't the best experience for me.  My doctor's nurse was very laid back and would barely palpate my lymph nodes during my exam.  I didn't see my surgical oncologist once after the day he performed the surgery.  All follow care was with his RN.  Fox Chase dermatology department is beyond thorough...love Dr. Zook!  I tried to get into the Genetic Risk Assessment Program at Fox Chase BUT was told I do not qualify because there ins't enough family history (guess me and my father having melanoma isn't enough?)  So...my question is, what follow testing do you receive?  After I want to be as proactive as possible and just feel that a simple chest xray and bloodwork really isn't enough.  Any advice would be appreciated...thanks much!

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Replies by: sharebear, Rita and Charles, Patina, Anonymous

Thank you to everyone that responded to my post last night - we are dazed with the news and reading that everyone is still fighting and ALIVE is a relief.  Our oncologist is the Director of Cancer hospital at Scripps Green Hospital in San Diego......but we didn't ask if he is a melanoma specialist, we wil. 

 

Does anyone have a San Diego referral for a Melanoma Specialist?

Rita

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jag's picture
Replies 17
Last reply 6/24/2015 - 9:33am

After my 4th craniotomy, my neurosurgeon came in to tell my family that he had removed what would be the last melanoma metastases in my brain.  Up to that point, I had had 2 lung surgeries, 1 Video assisted Thorascopy followed by 6 rounds of biochemotherapy, followed by 4 rounds of interleukin 2, followed by a complete left pneumonectomy.  I went on to have SRS radiation (still got the tattoo on my forehead for the laser alignment) followed by a craniotomy when that didn't work, and 4 subsequent cranitomies (2 were double craniotomies) that is when they cut 2 holes in your head.  In between there was focal patch radiation where they create a cast for your face and give you blasts of radiation, I never lost my hair during chemotherapy, the radiation did it, I got married as a fat bald guy to the woman of my dreams (my backbone through all of this and to this day).  

Anyway, enough about that nightmare, there were good times too, trips to most of the national parks, the islands in New England, my cousin's wedding in Ireland, and even working at nearly every borough except Staten Island in NYC as a relief veterinarian.  It has been quite a journey.

Two more brain surgeries later (to clean up radiation crud), a year of not being able to drive due to seizures and Dilantin toxicity, I am now back on my feet and maknig up for lost time.  I am finally tapering off of my seizure medication.  

I was there for the birth of my son Jedd via invitro fertilization.  He is named after my oncologist (and personal hero-who I am sure to this day is as dedicated to his research and cancer patients as he always has been as he has been since he started-Dr. Jedd Wolchok.  Scroll down to the bottom of this article (that was almost 2 years ago on his 

 http://www.fredhutch.org/en/news/quest/2013-12/revolutionizing-solid-tum...

My wife  and I started our own mobile veterinary practice (she is a vet too.)  check it out.  I personally designed the sprinter procedure vehicle which has digital radiography, anesthesia for elective dental and surgical procedures.  Check it out:

www.gsvmobile.com

Anyway, now we are in the process of tearing down our old shack (Meredith and I bought it because she would be able to carry the mortgage on a 600sqft house-if I karked it (as NicOz used to say)) and are installing a n new modular home 3 times it's original size (1800 sqft)  Jedd made me do it as did adopting an early reitrement seeing eye dog last year on my birthday who put us over the edge.  We are renting a house across the street and hope to watch the demolotion and construction of it.  

Meredith was diagnosed with a primary melanoma (barely stage I) and I realized how difficult in can be to think of a loved one being sick.  She was a champion thoughout my whole treatment and was strong for her's too.

Needless to say, having cancer definitely got me used to big changes, being busy, and dealing with stress.  On my worst days I can say "At least I don't have my own brain surgery scheduled for today".  

In the meantime, I'm sorry that I haven't been here to help encourage people and direct them for the best treatments as much as I used to.  The only thing I can say in my defense is that my treatments (other than brain surgery) are virtually non-existent any more and I have been just a little busy .  My treatment strategy was in this order. Say your prayers,  Minimize tumor burden, get throughthe most difficult treatments early on-save the easy ones for when you are really debilitated stay.  Immunotherapy and surgery were the best ones for me.  Stay active and keep moving (I try to get in 10000 steps on my pedometer/day) -say your prayers again, hold hands with your best friend, and look both ways when crossing the street.  

I'd also like to thank the current melanoma "experts" i.e. patients who are experiencing their own treatments and passing on everyday advice to others.  Another resource I always found useful was google alerts.  I had one set for metastatic melanoma and one for brain tumor treatments.  You can set one up for yourself here-you will find out about the "cutting edge" stuff before your doctor does!

https://www.google.com/alerts

Another one when I was scanning for trials is

www.clinical trials.gov.

I am writing this to offer a bit of encouragement for all of you fully engaged in your own personal cancer battle-know that my prayers are with you and to say that you are welcome to e-mail me if I can offer any support:  I'd also like to say thank you to all of the caregivers as you are the glue that holds a patient together.  Some of them (my wife especially)are like crazy glue, which is fine-it is stronger even if smelling it makes you a bit dizzy.

I never though life would be going this well for me.  I never thought it would be as bad as it was when I was going through treatment either.  Either way, I still think of god everyday.  I don't know why I have been lucky enough to be writing this right now.  Hope isn't a bad thing.

e-mail: gallagherjohna@yahoo.com

 

Insert Generic Inspirational Motto Here

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Acton plans from doctors is going excruciatingly slow - can we translate that to "it's not too serious"?  31 days since biopsy results, matsatic melanoma stage 4.  Nodule in right mid lobe 2 cm and 3-4 cm subcarinal lymph node showed high levels of activity as well after PET scan.  Still waiting on Brain MRI to be done this week.

Back and forth messages to doctors after our first initial visit, surgeon supposed to call today.

Can anyone share success on surgery - he would remove right mid lobe and all lymph nodes, affected or not per PET scan.

Is surgery typically accompanied by medication/ drug therapy as well?

Has anyone chosen NOT to do surgery and just go drug therapy alone?

We have an appt. with melanoma specialist on Thursday for 2nd opinion.  The challenge with the doctors at Scripps, they have been speaking to my husband via phone and he cannot remember a thing that they say!  Of course he is overwhelmed, he has been landed this huge diagnosis.

Should doctors, like any other business, be presenting us with a written plan?? Thank you for any insight - we are having to catch up to a lot of info and what we should be asking.

Rita

Rita

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Nell's picture
Replies 11
Last reply 6/23/2015 - 7:20pm

I am nervous to begin this targeted therapy after reading all the side effects that are possible, but I will begin taking the pills next week. Any advice..good or bad ..any encouraging words....or warnings....personal experiences ...will be so appreciated.  Stage 4 melanoma is really scary, but I am heartened by new treatments that are coming..and by the support of this forum . Thank you for your help. This is a place I know I can trust.          Nell

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/23/2015 - 2:14am
Replies by: Anonymous

I have been in a clinical trial for for 2 years in Washington D.C..I'm about to begin my third year.  I have just been reassigned to Dr. Geoffrey Gibney who was recently at the Moffitt Cancer Research Center in Tampa, Florida.  I would appreciate any information about your experiences with Dr. Moffitt.  Thank you.

.

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Anonymous's picture
Replies 6
Last reply 6/23/2015 - 12:18am
Replies by: Anonymous, arthurjedi007, Bubbles, Patina

Hi Forum,

My mom was diagnosed with stage IV in Oct 2014, lung nodule, liver lesion, and (at the time we were told) “too many brain mets to count”. She underwent a series of complications that first month (before starting any treatment) from numerous brain bleedings, resulting in WBR & 2 craniotomies (both to remove 1 bleeding tumor; completed successfully w/2nd surgery). Nov 2014, she began the Taf/Mek combo.  Over the last 8 months, we’ve been blessed with only good body CT & brain MRI results, showing tumor shrinkage each time, with brain mets down to less than 10 now. Similarly, her LDH has steadily fallen. Early May, she received 1st Opdivo infusion (continued initially on Taf/Mek, after some side effects that resulted in a hospital visit, she’s been on/off Taf for 4 weeks now). LDH was upper 500s 2 weeks ago when she received most recent nivolumab infusion. We have brain MRI & radiation onc follow-up scheduled 2.5 weeks from now.

We have faith she can get through all of this & the good scans have certainly helped keep us strong. That being said, before she started any treatment, we saw how quickly the brain mets can spiral the disease out of control, and these experiences might be haunting us a bit. Everytime she seems slightly confused or spends an entire day sleeping & not eating, we immediately worry somethings amiss in the brain. We’re aware it takes time for nivolumab to reach the brain and that when she’s off the Taf/Mek combo, she’s in a bit of “free fall”. We’re hoping some voices of reason from the forum can shed some light on:

(1) Others with brain mets, your experiences w/Opdivo? what's to be expected, in terms of mental fogginess, fatigue, etc.? did your melanoma oncologist or radiation oncologist have any useful tips or plans of action to help guard the brain during the first few months of nivolumab? or, if they didn’t, what was their rationale for not doing so? we’ve been told that as long as brain MRIs look good, there’s no use for SRS…naturally, our concern then becomes, "well, how quickly can things turn bad again, as long as there are brain mets that havent been zapped? why wait till its broken, to fix it?” are brain met complications something most oncologsists take precaution against when starting patient on opdivo? and if not, why not??  

(2) any insight as to how much of a “ticking bomb” these brain mets might be? we’re all worried that as long as the brain mets are there, they can spontaneously bleed or grow, placing my mom in immediate danger. this fear stems from that fact that before she started treatment, we saw how the brain mets could adversely affect her overnight. perhaps this isn't even realistic...is there any reason to believe that brain mets don’t develop sudden complications, as long as patient is undergoing some sort of treatment (even first 3 months of immuno)? does anyone have experience with sudden brain problems once they switched from BRAF pills to immuno, regardless of progress made on pills alone? 

(3) any useful markers to be on the lookout for, to get a sense of how things are going in the brain (in between scans)? For example, if LDH is normal, its unlikely body tumors are growing…can the same be reasoned for brain mets? Are there other (maybe even good) reasons for her mental fogginess? Given her steady brain met shrinkage over 9 months, as well as the trend of the LDH, does this place her in a safe spot for opdivo, in less of a free fall? 

Any clarity on all of this would be much appreciated! Would be great to sleep sound tonight OR, at least, start thinking more productively :) 

Thanks so much!! 

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Rita and Charles's picture
Replies 10
Last reply 6/22/2015 - 11:46pm
Replies by: Rita and Charles, Squash, DZnDef, Patina, Anonymous, Mom2Addy

Does anyone know if the PET scans work for brain?? We met with the doctor and the brain area "lit up" - he said that was normal so I assumed that the PET doesn't work the same way for brain activity. They have ordered a brain MRI...........but any feedback you have is great for us to learn.

Rita

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Anonymous's picture
Replies 1
Last reply 6/22/2015 - 9:27pm
Replies by: Anonymous

Has anyone experienced having low oxygen levels and confusion while be treated with Interferon? My Mother was started on interferon three weeks ago, and the Sunday prior to her forth week of the IV infusion phase she became very confused and her oxygen saturations were in the low 80's on room air. They have completed a chest xray and CT scan which all came back negative. She was started on steroids and provided home O2. Anyone else have this experience and if so what was the resolution?

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dentholla's picture
Replies 5
Last reply 6/22/2015 - 8:54pm
Replies by: dentholla, Bubbles, Speedster, Anonymous

My husband begins his trial this coming Tuesday as Stage 3b and it is not clear to me how much information can be made available to us.  For example, can we still ask that his positive sentinal node be tested further or that he be tested for BRAF?  I don't know if any of this has been done already or what his bloodwork looks like for that matter.  Perhaps I'm not being aggressive enough or asking the right questions.  I would appreciate any feedback on this so we are prepared when we go on Tuesday. 

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Replies by: LaurenE, Anonymous, AshleyS, dentholla

My dad is now 4 years in since his diagnosis with melanoma, 1 year since we found mets, which were surgically resected. There are now more mets (of course) on his last scan, so we are taking the step for systemic treatment.

The data for the combined nivolumab and ipilimumab is very compelling, however concerning for toxicity. We have an appointment to meet with an oncologist who is overseeing the expanded access to this and will likely get started in the next few weeks unless we find another option we want to try in the meantime.

I was wondering if anyone had any experience (either yourself or a family member) of actually doing both of these drugs together. I would love to hear about any success stories, as well as the failures, however I am more wondering about the personal experience of having this treatment. I want to help support my dad as much as possible and father's day may be a good time to load him up with blankets, playlists, games, mints what have you for when he is having these infusions - do they give you chills or hot flashes? burn entering your veins? metallic taste in mouth? etc

I would deeply appreciate any insight!

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Bennickliz's picture
Replies 4
Last reply 6/22/2015 - 7:01pm
Replies by: Bennickliz, Anonymous, Ed Williams, LaurenE

Is there anyone out there getting this combo without being on a trial? Can doctors prescribe this together since both drugs are FDA approved?  I've had Ipi with slight growth and tolerated it well and want to get the combo. Thanks for any input.

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