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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WithinMySkin's picture
Replies 5
Last reply 4/20/2018 - 8:28pm

Hello Fellow Fighters!

The Boston Miles for Melanoma 5k is coming up April 28th. I've been training for this 5k for a couple months to be able to cross that finish line (I'm CLEARLY not a runner!). If anyone is in the Boston area and want to meet, I'll be there! If you need a team to run with, join us!

Let's kick melanoma's butt together laugh

http://join.melanoma.org/site/TR/5kRunWalk/MilesforMelanoma?px=1089266&p...

Lauren

 

WithinMySkin

www.Withinmyskin.com

 

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Anonymous's picture
Anonymous
Replies 0

Diagnosed with stage 1b melanoma,  Keepjng an eye on my lymph nodes.  I thought my dermatologist told me that a swollen lymph node, with a pea size knot, would not be sore. Does anyone know if this is correct?  I have a sore spot on my side where my bra fits and I’m wondering if it is a bad fitting bra or if something else is going on. Thoughts?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/20/2018 - 4:05pm
Replies by: Atk4life, JuTMSY4, BillB

Diagnosed with stage 1 b melanoma on right ear on 12/2017. Had wedge resection with sentinel lymph node biopsy one of the lymph node was positive with very few cancer cells. January 23 had lymphadenectomy to remove 10 lymph nodes and a salivary gland since one of the lymph node was attached to it. Final stage 3a 

Is lymphadema common with this type of procedure? 

How is this procedure is affecting my immune system in dealing with comon upper respiratory infection and seasonal allergies, which I have? 

 

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jjk17's picture
Replies 12
Last reply 4/20/2018 - 2:58pm

Hey all!!

So I just took treatment #6 as of Friday the 13th! Feeling the same as usual. Fatigue probaly for the first 12 hours or so and then I have been expierencing headaches every 3rd or 4th day after and they come and go for the 2 weeks. We skipped a couple of weeks ago, to "make sure" it was the medication.(brain mri was clean) Doctor wants to start the double dose for 30 minutes in 2 weeks. To be honest, I am very apprehensive about that, just due to the fact of the headaches that I have been having...

Any one have any input of this....Anyone else taking this...?!?!

Thanks in advance,
Jill

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flydiver's picture
Replies 21
Last reply 4/20/2018 - 12:57pm

I was recently diagnosed with stage III after a biopsy of a golfball sized tumor in the lymph node in my left armpit. It took a while to do the biopsy, PET and CT scan and I had a lot of time to research. No primary tumor could be found. I'm still waiting for the brain MRI.

I know this form is all about encouragement and support, and my oncologist seems awfully rosy, suggesting trials and interferon. I'd like some advice from others that may be or have been in my mindset.

I'm 46 and single with no kids. I own a business and have done well for myself. I have no fear of melanoma. But there are two fears that keep me up at night:

1) what if I spend months or years in aggressive treatments, trials and waiting rooms only to die without really living?
and
2) what if I ignore treatments, sell my business, go have a blast and blow all my money, only to live another 20 years?

I watched my dad work two jobs most of his life, save up for retirement, then die at age 53 of esophagus cancer in only 6 months. I'm not about to let that happen to me.

I know there is no clear answer as to my life expectancy. I'm less concerned about having a long life than in knowing how long that might be. In other words, I'd rather know I had 2 years than not know and live for 10. It may seem premature, but my impulse is to cash it all in, skp the treatments, and go have fun. I could have one he'll of a life for 5 years, but if I'm still around after 10, I may want to kill myself.

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cjm22's picture
Replies 11
Last reply 4/20/2018 - 11:20am

After my boyfriend's visit to the ER last Friday for shortness of breath, the oncologist decided to switch him to Taf/Mek due to the crazy cancer progression he experienced after 9 days on immunotherapy. He started Taf/Mek on Tuesday night, just 10 days after his first immunotherapy infusion.

Last night we returned to the ER due to severe shortness of breath. He's been at the hospital ever since. He has a blood clot in his left lung, a lung infection, and very large metastases throughout his right lung. They have put him on antibiotics and also plan on draining fluid from his lungs. Tomorrow hematologists will consult with his oncologist to decide whether blood thinners are also a good idea for the blood clot. They are leery of doing that because of his brain metastases and craniotomy from two months ago, since blood thinners would increase the risk of a catastrophic brain bleed. But the blood clot also doesn't look too good, so it's a hard decision to make.

Right now my boyfriend is on supplemental oxygen and will stay in the hospital for a few days. He's still awake and able to walk to the bathroom, fully himself in every way, he just can't breathe well and even gets fatigued from talking too long. Every doctor we speak to at the hospital looks at us like they're so sad for us, like his days are numbered and he's just a dead man walking. I keep wanting to scream "He's not dead yet!!" Nobody has told us yet that he's going to die or what his prognosis is, though. Sometimes it feels like all the doctors are keeping that a secret from us. Not sure if we want to know.

It's hard to feel any hope. We're both devastated. Hoping for some kind of miracle with the Taf/Mek drugs and maybe then he can return to immunotherapy.

In happier news, last Sunday we decided to get engaged. So he's not really my boyfriend anymore - he's my fiance :) I love him so much and really hope we can have a wedding.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2018 - 11:13am
Replies by: sister of patient

My mother had a melanoma scare just last year. Like her I spent most of my life in the Sun, and I've been very worried about this mole specifically. I'm always itching my scalp because of hair loss, which contributes to the scabbing and possibly it's scarring / shape. Thoughts?

[IMG]http://i64.tinypic.com/14m40ig.jpg[/IMG]

The shape has changed slightly but this mole has always been pronounced. It almost feels split in a weird way now but that maybe from my scratching and it healing.

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We are looking for:
- recommendations on Neurosurgeons specializing in Malignant Melanoma lesions in the brain.
- Any stories, advice, conversation about medical alternatives to a possibly inoperable brain tumor in Stage 4 Mailgnant Melanoma

Ina nutshell:
- perfectly healthy, energetic, health food eating, non-smoking 58 year old female loved one diagnosed with 3 lesions in her left brain, plus a few more in her lungs (thought to be primary) 14 days ago.
- She needed emergency brain surgery to remove the biggest tumor in her left frontal lobe, leaving a smaller tumor in her left temporal lobe and an even smaller tumor in her left parietal lobe.
- Her recovery was going well over the next week, a little speech, movement and even walking to bathroom.
- She was receiving steroids to stop or reduce swelling, plus pain meds, anti nausea meds and anti seizure meds.  No cancer treatments at this time as we were waiting for the Oncologist to come and consult and they said treatment was not possible until the brain recovered a little (14 days).
- The biopsy pathology report then told us that the primary was in fact malignant melanoma, meaning with lesions in her lung and brain this was Stage 4 – bad prognosis.
- Unfortunately she declined and another CT Scan showed growth of both tumors and more swelling.
- Neurosurgeon prescribed super booster steroid which has helped again.
- The Radiation Oncologist said she was ineligible as her health and weak condition meant she could not withstand the therapy.
- The Molecular/Medical Oncologist said she was ineligible again due to her health and condition as his treatment was mostly for the body not the brain and it takes 6-8 weeks to show results, time he did not think we had.
- The Neurosurgeon and a second neurosurgeon have both said a second surgery is not recommended as it could cause more damage to a very important part of the brain and she has possibly already used up all of her body’s healing reserves recovering from the first surgery.

Now, what we do??  It seems the doctors are saying there are no medical options available that will improve her chances.

Luckily we are big believers in the Cancer Killing powers of Cannabis, namely CBD oil and humulene terpenes. We are simply afraid, if the swelling returns we will not have enough time for these treatments to work on the cancer and tumors.  We may need a neurosurgeon willing to do the second surgery to help us keep our friend alive long enough for our alternative options to kill off the cancer.  We are also open to any other options you might think of?

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/20/2018 - 8:00am
Replies by: Bubbles, Anonymous, Hukill, tedtell1

My mother was diagnosed with melanoma 2 years back recently we found that it has effected her lungs. I have tried Opdivo for 3 doses but the doctors are saying that she was not responding. What should we do now????

Please someone help me

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Hey all - 

Just wanted to throw a quick update. About 3 weeks ago we founnd my mom had 3 small brain mets and an inflamed pituitary gland. She had a wonderful appt with a radiation oncologist that recommended SRS. Thanks to this group I knew how beneficial it could be so we decided on that. She goes tomorrow to get her mesh mask made and Thursday her treatment is set (thank gosh since I travel for work Monday - Wed and was scared I would miss it!). She also has an infusion of Opdnivo on Friday. My sons first birthday is Saturday the 28th so she is concerned a little about the side affects. 

She has CT scans two weeks ago and although there was little shrinkage in the tumors they are holding stable still after only 3 treatments of the IPI/Nivo. They set the next infusion hoping she will tolerate that better. Her sodium is continually low but we think it is because of the pituitary inflamation.

My mom has finally moved from a different state in with me, filled for disability, and is enjoying the easy life. She keeps her mind busy by purging my and the kids 'clutter' and rearranging her living space downstairs. Thankfully it is time for spring cleaning anyway, I just have to remind her I still work all day so I can't scrub baseboards or fold the 4 loads of laundy she did during the say laugh. But I would take getting griped at for my cleaning anyday. Once again I want to thank everyone for the continued support on this site. I love the search when I am concerned or have questions as they ease my mind. 

Have a good night. Keeping you all in my thoughts.

-Aubrey

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/19/2018 - 11:37pm
Replies by: Mark_DC, jszeoli

Hi-

I am 45 yr old male living in NYC. I am working happily as an engineer, getting married tomorrow and we are expecting twins next month. I had a mole on my back for many years and it slowly started to get larger, not going fast enough to the dermatologist it started puffing up. I got it cut out (3.5 mm) and found it stage 2 and await news if it spread to lymph nodes- had 2 taken out. The more I read into this cancer the more worried I get about surviving it. My doc said the lymph nodes looked good but that might not matter until the tests come back. 

Can anyone give me any reassurance that this can be treatable, or if there may be any better drugs in the near future. Cant imagine dying from this with twins coming. 

Ughh!!!

Karst

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Steve D's picture
Replies 7
Last reply 4/19/2018 - 9:45pm

My wife is on a Opdivo/Yervoy treatment and has had cyber knife on her 5 brain mets. We are 8 weeks into treatment and the docs are starting to talk like its not workking. (for 6 months earlier she was on Tafilar and mekinst and responded well till we found the brain mets) Docs are talking about returning to TAF/MEK medication but my understanding is that it doesn't work well above the neck. Any ideas about how long this immunotherapy can take to work (12 weeks I've heard) and when to jump to something else?  

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/19/2018 - 4:32pm
Replies by: welcome32, Janner

My husband went to dermatologist for check up.  My daugher currently has Stage 3 melanoma.  Anyway the doctor did a biopsy and they called and said he needs to come back, the sample was too small.  Has anyone ever heard of this......worried......

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cjm22's picture
Replies 5
Last reply 4/19/2018 - 12:40pm

My boyfriend had his first round of the ipi/nivo combo 9 days ago. We had to go back to the ER on Friday (1 week after the infusion) due to increasing shortness of breath; the doctors there did a CT scan and found that the lung lesions have grown even more since his last scan from the previous week (yeah ... my boyfriend's had at least one CT scan a week for the last month for various reasons).

I'm scared this means the immunotherapy isn't working. Should it have done something by now? Or is there still a chance it will kick in later? Does the cancer get worse before it gets better?

He's getting more and more sick. It's hard to watch. Two weeks ago we went for a nice long walk in a forest. Today he can't walk a block without being out of breath and nauseous.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2018 - 8:48am
Replies by: SOLE, Kav7438, Anonymous, casagrayson

Hi

i am 44 years old. I  very active mole checker and have been doing monthly checks for the last 2 years for my moles. I have dysplastic mole on my back which hasn't changed in the last 2 years but today I was going through my wedding photos and realised that the mole wasn't there in 2009 (age 35) at all. So I've developed this s mole between then and 2014 - it's on photos from then.

 

in that time I had 2 children. I physically was ill when I came across the photo this morning  and I can't look at my children without crying. I'm beside myself. I will try and get in with the dr tomorrow to get a referral. 

 

Anyone with a similar ecperience? This mole hasn't scabbed, itched or bled ever. But it's a good size

im just beside myself 

 

thanks for reading 

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