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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jazztubs's picture
Replies 1
Last reply 8/18/2016 - 9:27pm
Replies by: sister of patient

Greetings All,

I'm looking to connect/hear from anyone who might have had a similar journey to the one I'm currently on.

It's been a wild 3 years, to say the least.  Here is the short story:

-Diagnosed over 3 years ago, with a large bleeding mole on my head

-Resected this area, with local wide excision

-Multiple lymph node disections, and the paratid gland removed

-1 year of high-dose interferon

-Developed Lung Mets: Did 6 cycles of high-dose IL-2 under Dr. Brendon Curti (highly recommend)

-All Lung Mets either disappeared or stopped growing--1 year later, no issues in the Lungs

-Rewind a bit...December of 2015, had a seizure. Found 2 Brain Mets. Treated with Gamma Knife. All good, until this spring, when one continued to swell/grow, etc. Had a Craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Excellent Surgeon: Dr. David Adler.  

-Since the surgery, I have had a few small seizures.  I'm about to have my 3 month MRI to examine the brain. Currently just taking anti-seizure meds, and not doing any other therapy

-I've experimented with cannabis treatments as well, including high-dose Rick Simpson Oil--and while I'm not certain this has helped with acute issues, it has certainly helped with maintaining healthy body weight and overall positive disposition and dealing with depression.

OK...So, fast forward to today.  I'm not going to lie and say I'm not affraid about what lies ahead: I'm very affraid.  So far, I've taken each day at a time, and have been super positive in my disposition--it's all I have left.  Recently, I've had to stop driving, riding motorcycles, and doing many of the other things that give me a sense of freedom and enjoyment.

Knowing that the IL-2 doesn't work over the Brain/Blood Barrier, I worry each day about what the future holds.  Is it more Brain Surgery? Is it sudden death due to a seizure? etc. etc. I know darn well no one can answer that, but I wanted to hear from others that might have had a successful IL-2 run, and then hit a wall with the Brain Mets...  In short, is there any hope for life after Brain Mets?

 

-Ben

Benjamin

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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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btcedarr's picture
Replies 8
Last reply 8/20/2016 - 10:37pm
Replies by: Jacklyn, btcedarr, Janner, Alce123, Anonymous, Bubbles

Someone mentioned that Janner has a forum for these stages, but I can't find it. Can someone post the link?

Thanks

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BrianP's picture
Replies 12
Last reply 8/23/2016 - 2:41pm

Can anyone recommend a melanoma specialist at MDA.  Dr. Davies was recommended but can't get in to see him until Sept 2.  I can probably get in with someone else next week.  Is there someone else just as good or wait one more week for Dr. Davies?  Thanks for any recs.

Brian

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anp21's picture
Replies 22
Last reply 8/18/2016 - 9:02pm

Hello all,

I have decided to post in hopes that someone will be able to help me to calm my nerves during the waiting time.  I have a wonderful support system; my husband, family and friends have been so amazing since I heard the words melanoma, but I still feel so alone.  It does not help that I have severe anxiety and always fear the worst. Unfortunately, this time, my worst fears are a reality.  

On July 28, 2016 I received the news from my dermatologist that a mole removed from my right thigh was indeed a melanoma. My dermatologist described it as superficial and stated that we caught it early. She scheduled me an appointment with a surgical oncologist and an oncologist who specializes in Melanoma. From my pathology, I understand that it is .59mm in depth, clear margins, no ulceration, mitosis is a 1, Clark's Level III.  

After waiting two anguishing weeks, I finally saw the two oncologists last Thursday.  I first saw the surgeon and his plan involved a WLE.  He did not feel that a SNB was necessary because of my age (31).  When the I saw the oncologist, he felt it important to also do a SNB and a PET scan.  He explained he felt it necessary due to the level 1 mitotic rate. He feels that my stage at this point is a T1b, but will not know until surgery and pathology is complete. 

My PET is scheduled for Friday and my surgery for Monday.  In the meantime, my anxiety is at a fever pitch. I am terrified that my melanoma has spread to my nodes. I am mostly feeling panic because at first, my derm and my PCP both said I would just have to have a WLE and I would be done. Now that I must also have a PET and SNB I am out of my mind with fear and anxiety. I just would like some insight from others who have experienced a similar situation/feelings.  I have a 10 month old son and I am terrified he is going to have to grow up without his mother.  

 

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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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My onc was telling me about this research she was a part of last time I saw her. This article posted yesterday, thought I'd share. Always love to see new research and advancements that will give patients a better idea of how well they might respond to certain treatments.

http://www.ucsf.edu/news/2016/08/403831/immune-cell-population-predicts-...

Off to get a chest CT to see why my lungs have been jerks lately... hopefully just a weird chest cold.

 

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

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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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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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Anonymous's picture
Anonymous
Replies 7
Last reply 8/16/2016 - 12:53pm
Replies by: Anonymous, Duffy's Mom, Polymath, btcedarr

My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

 

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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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ecc26's picture
Replies 18
Last reply 8/23/2016 - 1:11am

got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.

I need help and any suggestions are welcome

-Eva

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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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