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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eturner82's picture
Replies 4
Last reply 6/29/2015 - 10:58am

Hey Guys I've been MIA for a little while. Here is my Adam update... The nurse that is in charge of things at NIH was so so so nice she went above and beyond to help me!! ( I would so recommend NIH due to her kindness alone!) sadly Adam was turned down after they looked at his MRI and they saw the Lepto. Adam is on a chemo combo right now ( he had one dose while in UVA 4weeks ago) we are waiting for his platelets to go up for his second dose. He's on 4mg of dexametazone every 6 hours and that mixed with the morphine has GREATLY decreased his pain!! He can still get up to go to the bathroom but walking is very tiring for him. I feel that we are truly taking each day as it comes and as long as pain is not a problem each day is truly a blessing. 

 

Emily

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affguy's picture
Replies 11
Last reply 6/29/2015 - 7:56pm

I've been almost entirely a lurker here the last couple of years, with very few posts, but have still very much appreciated the information that others have shared.  Sadly, today it was confirmed that my Dad's battle is ending shortly after failure of BRAF+MEK treatment.  He began it in February of last year, and last month he had throat and shoulder tumors removed (despite an otherwise clean PET scan).  Last week he suddenly became incredibly fatigued, lost his appetite, and had brain mets found on imaging.  Today the neurologist who viewed his MRI told us there are no further treatment options available due to the extent of brain mets and areas involved.  He begins hospice care tomorrow and is not expected to last more than a few weeks.  Fortunately for him, this is not expected to be a physically painful process, though we will have morphine available in that event.  It also seemed to be kind of for the best to see this coming over the last week, which dulled the shock a bit.  This has been and will continue to be an eye opening experience for me, as my experiences with death to date have all been of the sudden and unexpected variety.  It has also raised my awareness, as this morning I made a dermatologist appointment for an unusual lesion/growth on my arm that I'm pretty sure is nothing but am trying to be better safe than sorry.  We can shoulda/woulda/coulda my Dad's initial pursuit of medical care and the path that care has taken (interferon from 9/12 to 6/13, BRAF+MEK from 2/14 to today), and that's probably a normal step of grieving, but if nothing else it has increased the attention my family pays to protecting our skin and watching out for abnormalities.

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Kim K's picture
Replies 8
Last reply 6/28/2015 - 9:40pm

Just wanted to let everyone know.  IL-2 is "old" but for those who respond, there is a chance to die from old age instead of mel.  I am one of those people cool

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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I started the combo today. I took the mekinist with the tafinlar this morning.  I am wondering if taking it with the evening dose would be easier..maybe sleep through side effects?  I have been very tired today..a bit shaky...slight headache and my face flushed. No fever yet... Has anyone had a red face or noticed that the timing of taking mekinist made a difference?  I read the side effects that are possible and just need some input.  Thank you!

One voice can make a song; one life can change the world.

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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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Becky's picture
Replies 3
Last reply 6/25/2015 - 8:19pm
Replies by: jenny22, Becky, SABKLYN

Hi

My son 26 year old son Ben was diagnosed 3A in 2009 (oral melanoma). Surgery and treatment (interferon) was done here in California with Kaiser. Last July his oncologist said that since he was 5 years NED, he could have annual checkups ( possible scans) instead of every 6 months.

In the meantime, he has moved to New York City and has his own insurance. It would be a year since he last saw a doctor. I told him to call Sloan Kettering since they have such a great reputation. They told him they only take new patients with active disease.

So does anyone have any recommendations for a doctor ( would he find a general oncologist?) in NYC?

Thanks!

Becky

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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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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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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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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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dsfarms13108's picture
Replies 1
Last reply 6/22/2015 - 9:26am
Replies by: Anonymous

has anyone heard of a study regarding the uv lights that nail salons use for gel nails ???????????? i thought i saw it is a huge risk of melanoma just like the tanning beds .I told my mom and sister to beware of this and they want me to prove that its not all hype  .. please give me some feedback if anyone can . thanks -by the way im currently fighting stage 4 melanoma  so it hurts my heart when someone disregards my warnings about tanning and such .

 

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Hi all,

My 75-year-old father was diagnosed with Stage 4 melanoma this week and it has spread to his lungs (one tumor) and brain (a few small lesions).  The doctors have already started him on whole head radiation given the size/number of his brain lesions and then we go to SCCA this coming Wednesday to see Dr. Thompson.  They did not initially test his biopsy for BRAF but, after we pushed, they are going to do so this coming week.  Given that we needed to push, what any other testing (genetic or of his biopsy) should we push for?  We're only a few days into figuring all of this out - and having the diagnosis sink in - but we have already discovered that we need to advocate for him and so I'm wondering what other newer gene/immune therapies to push to have him tested for.  Any advice on this would be appreciated...  Have any of you traveled to the UK or Europe for non-FDA approved drugs and/or clinical trials?  Was your local melanoma specialist willing to refer you?  Any advice on this would be appreciated.

My dad has been an internal medicine physician in a rural area for almost 35 years so we're shutting his practice down which has meant a lot to deal with alongside this diagnosis.  He doesn't have many symptoms - only some vision issues in one eye - so we're shocked by this obviously.

Also, for those who have been treated by ipi or BRAF drugs, how bad are the side effects?  My dad has been tired with the radiation/steriods to reduce the brain lesion swelling to date - but, it's going to get much worse when and if he goes on these drugs, right?

Lastly, if anyone knows of melanoma support groups in western Washington/Seattle-area, any info would be appreciated.  Both of my parents are really struggling right now so it may be nice for them to connect with others going through this.  This diagnosis is devastating and can feel very lonely at times!

So glad to find this resource online and we look forward to learning from all of you...

Carrie

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Looking for others going through the trail to compare notes.  Who's out there?

For me, after the first three cycles, which would have been both Ipi and Nivo on week 1 (one of which was placebo), then Nivo on week three and Ipi on week four, I had to stop due to elevate liver functions.  That means I would have had one or the other twice before the toxicity caused me to stop.   After six weeks of steroids and the taper off, I received Nivo on week 9 and Ipi on week 10.  Of course when I say Ipi or Nivo, you can read it as "or placebo."    

    

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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
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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