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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ajpeterson's picture
Replies 5
Last reply 4/21/2017 - 1:32pm

I scheduled surgery for May 15th....about 3 weeks from now to have a CLND and I'm trying to anticipate how much time I'll need to recover before heading back to work.  I teach 3rd grade and so it's not exactly a sitting around in an office sort of job.  :-)  Any ideas? 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/21/2017 - 10:34am
Replies by: Anonymous, jennunicorn

Hi! Just call me Kath. I have a mole at my upper back. It appeared when I was 28 years old. About 10 years ago. Before it was red. And now its already black. It is itchy and painful when touched. Can anyone tell me if this is melanoma. Thanks.

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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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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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Julie in SoCal's picture
Replies 13
Last reply 4/20/2017 - 4:45pm

I'm not sure how I created the anon post below, but it was not intended.  Sigh...

Greetings Friends!

I have some good news and some bad news.  First the good news!  WE HAVE KICKED MEL TO THE CURB!!!! I have completely responded to the Keytruda  and am currently No Evidence of Recurrent Disease (NERD) for Melanoma.  But wait, there's more.  Also I move from Stage 4 back down to Stage 3c.  This is awesome and worthy of a celebratory happy dance, but unfortunately it's uniquely connected to the bad news.

Last Thurs I had a biopsy of the mystery meat in my left lung and it came back as adenocarcinoma, non-small cell lung cancer, not melanoma. So the plan is to have surgery to remove the lung lobe with the tumor "Larry" in it and some lymph nodes  If the cancer has not spread to my lymph nodes, then surgery should be all that I need.  If it has spread, then I'll need more treatment, but I'm getting ahead of myself. I'll deal with that only if need be.

Right now this is all I know.  The hospital is organizing all that is needed for surgery, but it's not an emergency.  I'll let you know.

So this is the news.  Thanks again friends for walking with me in this.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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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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aziza's picture
Replies 5
Last reply 4/20/2017 - 7:10am
Replies by: Anonymous, aziza, CindyCo, Bubbles

I am quite new here.

We are Thai and live in Thailand.  My mother, aged 77, found a breeding so she went to see an OB GEN doctor on January 13, 2017, at a small hospital. She had a biopsy and a results shows a malignant mucosal melanoma. She was referred to an OB GEN doctor at Chulalongkorn University Hospital. The doctor confirmed that the melanoma is at vagina and cervix. Not sure it started from cervix or vagina.

She had an operation on February 6, 2017, removing her ovaries, tubes, uterus, some upper part of her vagina. However, the doctor said he could not remove all dark spots in her vagina that he found during the operation.  The specimens have sent for more biopsies for BRAF and blood test for MSI. 

She will have a radiation (external beam) next week, which will last almost 7 weeks.

Melanoma is such a rare case in my country.  Mucosal Melanoma is even worse.

In case you have a similar case to my mother's, please advise me in what treatment that works well. Or if there is other methods that work, please let me know. 

I also have biopsies results.  Can I post them here? So you can help me.

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Alce123's picture
Replies 6
Last reply 4/20/2017 - 3:34am

I was diagnosed with 1a (.44mm, no ulceration, 0 mitotic figures) in 07/2016. I had a WLE and called it a day.

My lesion happened to be found in the middle of stimulus for IVF (the embryo making part). We took the eggs out, fertiled them and froze them. It was recommended to wait a year before implanting. That 1 year mark is quickly approaching.

I keep having vague symptoms and always link them to melanoma... back pain, headaches, constipation etc. Whatever the symptom the answer is always Mel. So, It causes me anxiety.

My latest issue is discomfort/fullness in my upper right quadrant. There does seem to be something firm that is almost always in the location of discomfort. I have a longstanding history of constipation so... I think it's probably poop. All the same, unless I know for sure, it's going to drive me nuts.

I'm worried that if I do get pregnant I'm going to be completely batty with anxiety. My doctor offered a CT (chest abdomen, pelvis) but said it was probably overkill.

Would I be an even crazier person to take him up on this?

Thanks!

Alc

Alc

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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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rabbits68's picture
Replies 4
Last reply 4/19/2017 - 10:43pm
Replies by: SABKLYN, rabbits68

We will be visiting MSKCC in 2 weeks and wanted to know how far the clinic is from the metro on 53rd street.  We will come in from the Queensburo Plaza metro, is that truly a 15 minute ride into Manhattan?  Any tips you have are appreciated.  Going to see Dr Shoustari and hoping for a good visit. Thanks!  Lisa

LisaG

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boot2aboot's picture
Replies 8
Last reply 4/19/2017 - 10:41pm

I don't know if anyone on this board knows or reads Dr Mercola's blogs...but these last few weeks he has been running stories about Dr Burzynski and how this doctor's drug trial studies got axed by NIH...his study was about certain peptides...whatever...anyway, i hate it everytime there is some sort of 'conspiracy theory'...because it is upsetting to hear people run their mouths about being a 'possible' cure for cancer that was denied by the government because of jealousy, idiocy, whatever and cancer victims missed the boat...

i used to like reading mercola but i am beginning to think THIS guy is a HOAX...and very irresponsible...i would think if there is ANY validity  in regards to burzynski, a drug company would be NUTs not to buy the patent...cures are BIG MONEY...just look at the cost of yervoy...but then again, desperation makes one doubt and doubt....

don't back up, don't back down

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baesill's picture
Replies 3
Last reply 4/19/2017 - 10:03pm
Replies by: baesill, miaka618, Scooby123

I am a 33 year old woman with stage 4. I just started ipi plus nivo a week ago. What side effects suggest pituitary issues? Is there anything specific I should look out for? Is it possible to catch damage to the pituitary early and avoid loss of function?

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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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baesill's picture
Replies 6
Last reply 4/19/2017 - 3:39pm

Before my stage 4 diagnosis I was dealing with low grade fevers in the evening. I was told this was rare symptom of metastatic melanoma. I have two small mets on my liver and normal liver numbers and normal LDH. I also have a cluster of nodules in one lung and several enlarge do lymph nodes in my chest.

I am desperate for other stories involving fever as a symptom, but also as a side effect of ipi plus nivo (my current treatment).

Are fevers always a bad sign?

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