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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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2016 - 10:02am
Replies by: Gene_S, JuTMSY4, cavsnut

I just had my yearly CT scan done yesterday, but all day today I have felt very nauseous and have had a headache. I don't remember feeling like this last time but is it possible it could be from the dye?

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KAF's picture
Replies 1
Last reply 8/17/2016 - 9:32pm
Replies by: MoiraM

3 weeks ago - 1 week after my 3rd ipi/nivo dose I got horrible headaches.  MRI showed an inflamed pituiatry.  I was put on 1mg/kg of prednisone for a week and then weaned down to 5mg/day over the course of 2 weeks.  My headache got better but never totaly disappeared.  On the 2nd day of the 5mg (yesterday) the headaches came on stronger again and i was having blurry vision.  Went in for a stat MRI and it showed the pituitary being the same size as it was 3 weeks ago.  I had an IV push of 80mg steroid but I couldn't stay overnight (I'm a single parent) so I came home and took the 1mg/kg again this morning.  THey want me to go to the ER for a drip but I can't leave my kid so I will go into the ER for the drip in the monring.  The headach is greatly reduced but is still there.  My question for anyone is should the steroid be eliminating my headhache entirely after starting the predinisone or is it normal to take a dary or two or more for the headache to subside.  I feel much beter and my eyesight is normal now so I don't think going to an ER tonight necessary.  Not sure what happened to my pituitary...maybe they tried to wean me too fast.

anyone else have any input or experience???

thanks

Karen

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Lee Parlier's picture
Replies 6
Last reply 8/17/2016 - 5:21pm

I finished my lasy yervoy 10 mg treatment almost 3 weeks ago. I got through the first 3 with minimal side efffects but my luck ran out as I was expecting. colitis, fatigue, nausea and abdominal pain. I began urinating blood which clears up through the day with water consumption. I know this is a rare side effect but was wondering if any other ipi users experienced this during or after the ipi treatments? I see my onco on Wed and will tell him but has anyone else experienced this side effect? 

Lee Parlier

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laulamb's picture
Replies 7
Last reply 8/17/2016 - 3:42pm

Hello,

I am Stage 3a and did not qualify for S1405 (ipi/interferon arm vs pembrolizumab arm) because I only had 1 sentinal lymph node positive and not 2.  Dr. Kirkwood at Hillman Cancer Center recommended interferon as a treatment option.  I declined and got a 2nd opinion with Dr. Schucter in Philadelphia.  She recommended no treatment because my original melanoma was superficial spreading, 1.3 mm, clark III and Mitosis rate = 0-1/mm2.  She said I was low risk.  She asked me how I felt about that and I told her I understood what she was saying but I was looking for a treatment option.  She sent pre-authorization to my insurance company for ipilimumab at 3mg rather than the 10 mg and I had my first treatment two weeks ago.

Questions are:  How will I know if I am a responder to ipilimumab?  And will ipilimumab work on BRAF negative melanomas?

Thanks in advance!

Laura

 

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jennunicorn's picture
Replies 10
Last reply 8/17/2016 - 3:39pm

I recall reading that some people have developed pneumonitis while on immunotherapy drugs. I have had these symptoms for the past week: deep cough with not a lot of mucus but not totally dry, burning feeling in lungs (like the feeling after a run or heavy exercise), heavy chest, more fatigue than usual.

Wondering if anyone else who has dealt with pneumonitis can tell me if these symptoms sound familiar, or maybe it's just the crappy air quality of california that's doing it. Had pneumonia as a baby, not sure if that makes me more susceptible or not. Emailed my onc, should hear back from her tomorrow, but wanted to get some input from you guys.

Thanks :)

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/16/2016 - 11:39pm
Replies by: KMick, Brice311

I am waiting for the results of a biopsy done yesterday. I was told to expect a call in 7-10 business days, so I guess I have another 6-9 to go. I'm not really sure what I'm looking for here. Maybe just a place to share my story.

About 6 weeks ago, I accidentally ripped off a lifelong mole with my finger nail. It did rip off quite easily, which I know is a red flag. The mole has always been slightly raised and mostly skin-colored, with milk chocolate pigmentation in the left corner. I know that isn't normal, but I was always told it wasn't worrisome since it had always been that way. After it ripped off, the skin healed on its own within about a week and a half. Within a month, the mole was back and looking pretty much how it had before. I was concerned about how easily it had come off though, so I saw my regular derm. She looked at it with a dermascope and didn't really say much or seem too concerned, but asked me to come back in two weeks (yesterday) just so she could check it again and make sure it was alright before I left town for college (this Friday).

Last week, I saw a different doctor for a second opinion, mostly out of paranoia and a desire to be sure. This derm also looked at it through a dermacope and her exact words were "this pigment looks great" and "it looks fine to me." That put my mind at ease and I went to my regular derm yesterday expecting to have her comments echoed. 

Excpet my derm looked at it again (sans dermascope this time, I think. It's on the back of my shoulder and I wasn't watching her that closely, so I can't be sure) and decided she wanted to take it off. She didn't really say why or tell me what the red flags were. She just said she wanted to make sure there were no "abnormal cells." When I asked her what to expect from the results, all she told me was that she didn't think it looked "severely abnormal or anything."

It worries me that I got the all clear from one doctor, but then got such vague responses from my regular doctor. I know the mole has always been there and has always been raised. I know there has been one corner of pigment. However, I'm not sure if the pigmented area has grown or changed at all over time. When I think about it, I think maybe it has, but that may just be my anxiety. 

I'm really scared that it ripped off so easily because I have heard that is a sign of advanced disease. But could a board-certified, trained dermatologist typically look at advanced melanoma through a dermacope and determine it had "great pigment?" Would it appear more innocuous than it actually is because it recently grew back?

For reference, my regular derm is actually an FNP. She practiced as an RN for seven years, and started working in dermatology as an FNP about two years ago. The second opinion doctor, who thought the pigment "looked great," was a board-certified dermatologist (an actual MD) who seems to have been practicing for about 11 years. 

I know nothing can diagnose but this biopsy, but would it be typical for a lesion to "look great" under a dermascope, but turn out to be advanced melanoma?

I'm likely being overdramatic about the whole thing, but I'm an otherwise healthy 21-year-old getting ready to start my senior year of college and suddenly I'm imagining all of that being derailed by a huge cancer battle. I'm afraid of never getting to have a career or kids.  

I'm just trying to figure out what I should realistically be prepared to hear when I get my results. I don't want to be completely caught off gaurd.  

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Mat's picture
Replies 3
Last reply 8/16/2016 - 11:13pm
Replies by: Bubbles, Mli0709, khubes

Got spam-blocked on Eva's thread, so posting here:

Eva, I'm sorry to hear about your present status.  When I met with Dr. Wolchok before starting ipi-nivo, he mentioned that Sloan has seen some patients do well on chemo following checkpoint inhibitors (synergistic-type effect).  I've kept this in mind for myself.  Chemo-only--not so exciting.  Chemo with the possibility of a synergistic effect and a bridge to something else--more interesting.  I'd also consider attempting another run on BRAF-MEK.  (My recollection is that you are BRAF+.)

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Anonymous's picture
Anonymous
Replies 14
Last reply 8/16/2016 - 8:38pm

My father in law was diagnosed 5 years ago with stage 3b melanoma. Last summer, it moved to his liver and intestine. In May, his pet scan revealed 2 brain mets in the right and left frontal lobes. He had radiation done within 2 weeks, targeting the two lesions. On July 5th, he had a MRI to check on lesions since undergoing radiation. The smaller tumor showed no regression or progression. The larger tumor showed significant progression of 1cm. He met with a neurosurgeon yesterday and surgery is not an option. He has to wait another month for another MRI and to get more information. Medically, he cannot have another before then. He is extremely lethargic and low brood pressure. Dr said to contact him if feeling symptoms of tumor growth. He is currently on opdivo infusions that have significantly helped tumors in liver-none lighting up. He still has the cancer in intestine. I'm very concerned about prolonging treatment, knowing brain mets are fast growing. Any suggestions? My in laws stated that they will not get a second opinion. Anyone know of helpful clinical trials that involve brain metastases? Thank you so much! 

 

Blessings to all! 

 

 

Libby 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 1:29pm
Replies by: Anonymous, asdff12344, jennunicorn

Hi everybody:

I'm new here.  Here is a little background.  I am 27 years old, male, Asian.  I have been sunburnt before.  More importantly, I got sunburnt a lot in high school (I used to live near the beach) to the point my skin started to peel.  I have no history of skin cancer or melanoma.  I had no issues with it until now. 

Recently, I checked my already-existing mole (I think it is a mole).  I had it for a couple years (maybe 2 years).  It does not look like a mole.  It is circular with no middle (the middle is a normal skin patch).  There are no ABCDE signs.  What caught my eye was that it became darker.  Nothing changd about it, but it did grow darker.  Thus, the doctor wanted me to get a biopsy, which I did this morning.

I did go out to the sun last month.  One, in Las Vegas (swam outside for maybe an hour).  Second, July 4th (where I swam in the ocean for about an hour).  Would this make this scab/mole-looking thing darker?  Should I be worried?  The original color was a light brown.  Now it is a darker brown.

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KAF's picture
Replies 8
Last reply 8/16/2016 - 12:15pm

hi all

Has anyone lost hair from the ipi/nivo combo?  If so, did it grow back?

Also, my eyebrows, eyelashes and other body hair are turning grey - did this happen to anyone else?

Did 7 weeks of ipi/nivo and had to stop 2 weeks ago due to pituitary inflamation 

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Gordknight's picture
Replies 4
Last reply 8/16/2016 - 11:39am
Replies by: jennunicorn, Gordknight, MoiraM, Anonymous

First to start off I know that so many of you warriors out there have it so much rougher than I do and how you find the strength and will to carry on I only hope I can achieve some day in my life.

I had a stage 1a melanoma removed from my neck back in November of 2014 and have had many scares and removals since then (all of which were benign or midly atypical) I am kind of a moley white guy.  Age 33.  Anyway I noticed a new spot developing on my PALM of all places.  Luckily I was at my family Dr for an unrelated issue and he took a look at it and said he didn't think it was a melanoma (but I know he isnt a skin specialist) but it would be wise to follow up with my Derm.  I got an appointment with my derm for the 31st of this month and put on the wait list in case anyone cancels an appointment but of course I did the worst thing you can do and googled.  

Now I am convinced that this is an Acral Lintiginous Melanoma.  The pigmentation is on the ridges which is what inclines me to think so after reading liturature about them.  I know Im doing the right thing in going to see my derm (who is great) asap but it still makes me just want to crawl into a dark corner until that morning arrives.  Im sick with worry.  

I used to be a care free guy until I had my first melanoma and ever since then I have had my good days, but I still feel like the majorty of my life has been lived in panic and fear.  Anyway I guess I am just looking for opinions and encouraging thoughts.

I have included a picture of the new spot.  ( I know nobody here is a doctor and cant diagnose me).  Im just having a hard time imagining going through surgery again and more years of fear waiting for the other shoe to drop.. again.

http://imgur.com/qIaAiQD

Thanks in advance for your help.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 10:41am
Replies by: sfyfe, SABKLYN, MoiraM

Hi there,

I'm 24 and I've never really had a problem with any skin growths/discolorations.  But last week (about Wednesday) I noticed a sore/tender spot just below my left eye that was a slight pinkish color.  Fast forward to today, it's a large skin irritation with a large black spot to the left (picture below.  It's grown very fast, and while it's not very painful (about as much as a popped zit) It's obviously very concerning and stressful.  

Would you guys have any advice?  I didn't really know where to turn.  Thank you!

http://i.imgur.com/0X9ZWNN.jpg

 

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Mat's picture
Replies 14
Last reply 8/16/2016 - 12:11am

Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden.  My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier.  Trust me, at diagnosis, no medical professional said to me--"don't worry, you have at least 3 great years left."  I've had (and may still have) multiple liver tumors and I've had 3 brain tumors.  If you read this forum and other sources, you know that those can be signs of a poor prognosis.  

Who knows what the future holds?  I take it one day at a time (or try to).  On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January.  I feel very fortunate to be where I'm at.  I don't assume for a minute that I have this thing beat.  Rather, I assume the opposite--my resilient melanoma cells will continue their Darwinian battle for survival.  I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.

Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts.  I feel your anxiety and frustration.  As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges).  I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.

Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1.  While there is no clinical trial data on this, the answer is "yes".  (I failed both individually.)  I don't know if will work long-term, but I can tell you that it can work for at least 7 months.  I hope to be able to report back that it will continue to work for another 1,000 days--one day at a time.

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LizaC's picture
Replies 14
Last reply 8/15/2016 - 9:47pm

Hi
My partner is on day 4 of her first ipilimumab treatment. The cancer is progressing aggressively and we pray that the IPI starts kicking in. (She responded to brafi keytruda) why not ipi. .

She went back on brafi for a short time 2 months ago and ct scan showed mixed response. Mainly in the liver, since then shes had internal liver radiation, radiation for bone mets.

We decided to go back on brafi but only the dabrafenib not mekinist due to side effects. Cancer has continued to progress. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough.. he suggested continue with Ipilimumab and we could bring in mekinist. Does anyone know much about how these 2 drugs are together?, I can find anything on the net.

Things are getting very desperate now.
Regards
Liza
(Partner to Melissa)

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/15/2016 - 6:26pm
Replies by: Anonymous, Brice311

Here's the Mole

 

https://imageshack.us/i/pozbaHfZp

 

 

No idea how long it's been there It's under 4mm I think. The problem I have is I can't afford to shell out for s Biopsy without sacrifice so please looking at the mole is it safe to watch and wait? Or because it's new should I remove it?

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