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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stevenallenschwartz's picture
Replies 3
Last reply 4/20/2017 - 8:46pm
Replies by: Ed Williams, Anonymous, Jubes

I just returned from my dermatoligist who first caught the melonoma on my back. He noticed my arms have rashes from the Keyrtuda. His observation was that patients who get skin rashes generally do better than those who don't get rahes. Is there any truth to this?

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Shaneswife's picture
Replies 2
Last reply 4/21/2017 - 7:30pm
Replies by: Maria C, Shaneswife

Looks like he's staying in dabrafenib and tramentinib for another month. Then scans mid May with results May 16th. If any progression moving to single agent prembro as we can get coverage for ipi/nivo combo funded either through our private insurance or provincial health care. The hospital is working on appeals with the insurance company but I do not think we will win. Blood and ekg monitoring until then. 

Will be doing the pembro while on 8mg of dex. I understand there is a lot of controversy about steroid use while on immunotherapy but we are going to try it. 

 

Immunotherapy is buying time but at what cost to quality of life? I can't answer that for Shane. I wish I could but I can't. 

 

So so now we sit and wait again. But at least we're waiting together. 

 

 

Janis

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tibtrevino's picture
Replies 1
Last reply 4/22/2017 - 2:50pm
Replies by: Spl25

Hey guys

So my the docs told my wife she was clear of liver mets back in August.  Well it looks like the radiology dept dropped the ball because her specialist in Seattle says she has 4 in her liver.  3 are stable and 1 is actually growing.  She is currently on Keytruda every three weeks.  He said she'll continue that along with radiation treatment to the liver which is new.  What is yalls experience with that?  

Her background 

29 Years Old, Diagnosed in 2013, stage 4 liver mets. On keytruda for a year now

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/27/2017 - 5:53pm
Replies by: debwray, Bethharte, BillMFl, Anonymous

Maybe a silly question. I have my 6 month visit after Melanoma in situ on my chest tomorrow. And I have fake nails and painted toes. Do I have to remove my fake nails and nail polish for my melanoma doc to check them? How common is Melanoma of nails? Thanks

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KatieB's picture
Replies 10
Last reply 4/26/2017 - 10:05pm

Hi all,

I am newly diagnosed 1A.  I have kids and want to do everything possible to stay on the good side of the statistics.  I have been told to wear protective clothing at all times during daylight hours but that seems really difficult.

I run marathons and I can run a lot of my miles on a treadmill but when I'm doing a hot long run in the summer, I can't imagine wearing long sleeves and tights...

And it feels sad to me not to wear shorts all summer.  Though I can get over the sadness - I would rather be alive with pants on if it's important.

So, I guess, I wonder what you think about sunscreen vs. protective clothing when you are outside?  Is sunscreen ever enough if you're outside for a couple of hours? Or is protective clothing really the right answer.

Also, I have a number of moles on my back and stomach but don't have any on my arms and legs.   So, are my back and stomach the most important areas to cover or does it not matter?

As I said, I have kids and more than anything I want to be there for them as they grow up.  I'm wondering how you all handle the need to avoid the sun with living your life.

Thank you for any thoughts,

Katie

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Anonymous's picture
Replies 1
Last reply 4/20/2017 - 11:52am
Replies by: Jamie1960

Instead of getting shave, or getting none at all . . .

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I'm worried that my troublesome mole could be misdiagnosed. 

So the question is this: How would you go about minimizing any chance that the mole you suspect to be "weird" could be misdiagnosed? 

Here are three interesting articles that I found that raise this problem: 

https://www.omicsgroup.org/journals/misdiagnosis-of-melanoma-a-7-year-si...

http://www.mdedge.com/edermatologynews/article/11006/melanoma/vigilance-...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360010/

 

 

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baesill's picture
Replies 8
Last reply 4/20/2017 - 11:17pm
Replies by: Mark_DC, MikeW, Mat, Polymath, Bubbles, Ed Williams, Anonymous, miaka618

At every turn in my diagnosis for stage 4 all the doctors seem overly optimistic. After every scan and biopsy it's  just more bad news. Looking at my first X-ray that sounded the alarm bells it seemed clearly horrible. 9 days into ipi plus nivo I feel like the first dose isn't going to do the trick, I know I have 3 more, but I just don't see how this can turn around. I feel destined for all bad news all the time and that I'm not going to be lucky like jimmy carter or whoever. I don't know what I'm asking. I'm just sad and wondering if anyone feels or felt how I do now.

 

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baesill's picture
Replies 6
Last reply 4/21/2017 - 9:40am
Replies by: newmanmark, Anonymous, Hukill, Johnjk04, jennunicorn

Hi 

I'm a stage 4. It's been 9 days since my first infusion and I just feel like it's not working yet. I still have all my symptoms from before therapy and they are actually starting to get worse slightly. I also just had a chest X-ray and everything that was in my lungs is still there. Does absence of an early response hurt my prognosis?

Did ipi plus nivo work for you? If not what was your second line? Did you feel like you could tell it wasn't working before scans? If yes, when did you think it started working? Or were you surprised by good scan? 

The reality is that this combo doesn't work for everyone, and want to hear it all. People sharing experiences here has helped me so much.

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casagrayson's picture
Replies 10
Last reply 4/27/2017 - 9:55pm

To only do punch biopsies?  My husband has had two primaries, both of which were biopsied with shave biopsies.  He's had dozens of biopsies since, and the derm *always* shaves.  I even asked last month, when they were removing a really ugly lesion (which turned out to be squamous) if he would do a punch, and the med assistant said that he wouldn't.  We have another appointment tomorrow for another bad spot on his skull, and I *really* want to move to punch biopsies.  Any suggestions for how to approach this?  (He's a really great doctor, very caring, but just very busy and I think shaving these things takes less time.)

 

Strength and Courage,

Susan

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zfishberg's picture
Replies 3
Last reply 4/26/2017 - 2:08pm

Hello!

I read several posts on this forum regarding pseudo progression of Keytruda when treating the brain mets.

In case of my husband - we had 3 infusions since middle of February . MRI has been performed in March and another one yesterday. Both of them showed decease progression with multiple new lesions and size increase of some existing lesions

i have read that Keytruda effect can sometimes be delayed and enlargement of existing lesions due to swelling is also common.

But what about new lesions? Is it the decease progression and we just have to be patient and continue with Keytruda?

Or it's better to stop and switch to ipi/novo?

I know that it's case by case basis, but wanted to hear from other members of this forum.

 

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Anonymous's picture
Replies 5
Last reply 4/23/2017 - 6:12pm
Replies by: Anonymous

After three Ipi/Yervoy infusions (10mg/kg) I have a slight headache and these are my test results for determining pituitary function.

T4 Free: 0.62. (Previous two test results: 0.82, 0.77)

TSH: 1.05 (Previous two test results: 3.78, 2.14)

These tests point toward me being Hypothyroidism (my TSH is dropping but still within a normal range, whereas my T4 Free is below the expected range) but I feel like I'm almost Hyperthyroid (overactive, solid energy).

I am now taking Thyroxine to lift these levels but my question is: Will that help my pituitary if it is being impacted by Ipi?

What would help my pituitary?

I am under the care of a great Melanoma specialist but also wanted to ask these questions here.

 

Stage 3. Diagnosed Jan 2017 via excisional biopsy (no known primary)

Surgery Feb 2017. Ipi/Yervoy started Mar 2017.

I'm not out of the woods, but I'm always moving on.

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FeelingLonely's picture
Replies 2
Last reply 4/19/2017 - 1:14pm
Replies by: FeelingLonely, Anonymous

My mom was diagnosed with stage 1B Melanoma on her right cheek, miotic-1mm, Breslow-1mm, Clarks II. No ulceration. No lymph nodes impact per first wide excision surgery. No SNB done. No further lymph node assessment done. She had second wide exicsion surgery to remove remaining cancerous tissues. her cancer cells and not continous/cohesive but rather scattered. She also removed 3-4 moles from her leg, however those seem non-cancerous per intra-frozen scan section.

During her follow-up today, she was asked to take a stomach scan. asked her to come back within a month and get it done, since they didnt have time that day. I asked her if its because if they found something from her second wide excision surgrery. The second biopsy report has come, I have asked them to copy it and send to me but I am yet to receive it. Mom told doctor said there is nothing to be concerned about and just recommended a stomach scan to rule out any possibilities.

The thing is - my mom doesnt follow medical terms well. I am across the globe and unable to go with her for doc appointments, so I am not sure what she means by stomach scan. I asked her if it is CT scan or PET scan, but she is not too sure. I think they just told her stomach scan.

I am posting it here to see

1. if this is a routine scan they do as part of melanoma treatment and does not necessarily mean they have diagnosed an issue.

2. If you think it maybe the CT scan or PET scan or just an ultrasound.

Its hard not being able to talk to doc directly and having to rely on limited information they share with mom (possibly thinkign she doesnt understand much anyway)

I am thankful for all of you here!

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Hello everyone and thanks for your information.  My situation:  54 year old male.  Stage IIIB melanoma of neck. Approved for participation in Keytruda arm of ongoing trial and start infusions next week.  Work out 500 minutes per week (cardio and weights).  Shift worker.  My question has to do with life style changes during treatment.  Now I do understand that everyone reacts differently but can I reasonable expect to be able to continue my shift work and work out regimen while being treated?  Or should I go into this knowing that I must significantly reduce my expectations regarding exercise and work hours.  

I apologize if this subject has been addressed previously.

Thank you, 

James

 

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Anonymous's picture
Replies 7
Last reply 4/20/2017 - 3:24am
Replies by: raun cesar, FeelingLonely, Anonymous, TiffanyDiamond

I have a tiny light brown flat mole. I noticed a small black dot in the middle of it and *stupidly* decided to scratch it. It was simply removed but after scratching the mole I woke up the next morning with redness around the mole and something like scab on the top of it also it looks darker. So my question is could this be cancerous???
It's 1.5 mm in diameter but it changed dramatically in two days.

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