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 0

Does this look like nodular melanoma? Went to doctor two times he popped it. It bled but it was bigger than this the hole is there because of my doctor using a needle to pop it.

 

https://imgur.com/a/YHPo3qu

 

Just want opinions on people with experience

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Is this something to be concern about? Or is it common??

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/20/2018 - 5:30pm
Replies by: SABKLYN

I went to my clinic today and my doctor checked out my mole. I asked him if it was a atypical mole and he just said no, he told me it just looked liked a mole and continued by telling me to not listen to the internet because moles could infact have an irregular shape and have different shades of brown. http://i68.tinypic.com/6pxhs8_th.jpg
He then told me what I should be looking for is black in the mole and a shape that's more like this.
http://i67.tinypic.com/11u9el1_th.jpg
(I think, this is all coming from memory.) But I just want to know if this is true or not. The mole has no change in anyways I could notice through a span of 2 years. It stayed relatively the same.
http://oi68.tinypic.com/6gis6p.jpg
He then told me that melanoma usually is about 6mm or larger. This mole has always been 4mm. He also told me that the if I drew a line through the mole it would match the size, which I have doubts about but I'm not the doctor here.. anyways he still said that theirs no certainty and I'll see a dermatologist and get a biopsy. Also everyone I've shown this too has all said it's nothing to worry about. What do you guys think?

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RichInLife2's picture
Replies 2
Last reply 8/20/2018 - 3:17pm
Replies by: RichInLife2, Bubbles

I have several small mets in my lungs (as well as larger ones in other places). I'm scheduled to begin immunotherapy (Nivo) this week. I also have asthma, for which i take an inhaled corticosteroid (QVAR). The doctors say that it's ok to continue taking the QVAR, but it seems weird to me to be taking Nivo to stimulate my immune response while also taking QVAR to suppress the immune response in my lungs. Asthma sucks, but so does cancer.

Any other asthmatics with lung mets out there? Thoughts?

 

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Hi everyone! It's been a few months. For those who don't know our story, my 30-something-years-old then-boyfriend (now husband) was diagnosed with stage 4 melanoma this past February and has a very high tumor burden: brain, lungs, kidneys, liver, spleen, adrenals, spine, pelvis. He had an emergency craniotomy early on plus whole brain radiation and stereotactic radiation, then 2 months later they started him on the ipi/nivo combo only to realize that his cancer was progressing way too fast, so they switched him to taf/mek just a week after his first infusion of the immunotherapy combo.

My husband has had a pretty good run on Taf/Mek. He just had scans a couple days ago and things look like they are still shrinking overall. In April he was on home oxygen, not eating, and sleeping all day, but the past month and a half have been especially great. We went on a 2-hour bike ride just a few days ago.

So my question is about his spine metastases. He developed back pain in late May while on Taf/Mek and the docs did 10 rounds of radiation, which cleared up the pain completely.

But now the back pain has returned :( It's accompanied by mild tingling in his foot and leg. It started on Saturday. Just last Wednesday we got the news that his scans still look great and the cancer is shrinking, so not sure what is happening with his back now.

We left a message with his oncologist but I was wondering if you fine folks had any idea what might be done to help him now. He's already had radiation to the area, so my understanding is they can't do radiation again. Does he have any other options? I'm especially worried about the "tingling" -- will this ultimatley lead to paralysis? Or do you have any other ideas for pain management?

Right now he takes maybe 4-8mg of hydromorph per day so not too much. But it got VERY bad the last 2 times (1st time pain went away when he started Taf/Mek, 2nd time pain went away when they did radiation). So I'm scared.

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RichInLife2's picture
Replies 3
Last reply 8/20/2018 - 4:52pm
Replies by: Edwin, VinceMart, Bubbles

Newly diagnosed stage 4 here. 2014, had a rogue mole remove from my elbow, staged at 2b. Area was excised and the sentinal node biopsies came back negative for melanoma. Fast forward 4 years and I have melanoma in my brain, lungs and liver. I live in eastern Connecticut and my original surgery was done at Roger Williams (RW) in Providence. I have consulted with RW as well as Dana Farber in Boston and Yale in New Haven. Dana Farber and RW basically agreed on my first line of treatment (Nivo) and they both suggested that I meet with a radiology oncologist to consider radiating the single met in my brain, so after a few stressful weeks after my initial stage 4 diagnosis, I think I have a treatment plan in sight.

My question is, the guys at RW, while competent and caring (I really like the original surgeon), are not melanoma specialists. So while RW is much more convenient to me, I'm thinking of getting my treatment at RW and having my reconrds sent to Dana Farber so that they can evaluate my scans at 3 months. I'm aware of the pros and cons of this (Dana Farber would much prefer I do everything there and they gave me some good reasons why). However, the 2-3 hour drive into Boston would be added stress for both me and my wife and I don't know if it's necessary since my treatments would be the same in both places.

So I'm wondering if this is something anyone else has done -- to get care and treatment in one place, but consult with another place. Please let me know your thoughts. I'll probably begin treatments this week. I just don't know where yet.

-Rich

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Anonymous's picture
Anonymous
Replies 0

Hi everyone!  I was dianosed with Melanoma stage 3B.  I am currently doing Opdivo treatments, which I started in February.  At the end of June, I developed colitis from the Opdivo.  My doctor stopped my treatments at that point and put me on prednisone.  He says the colitis was grade 3.  I really want to continue with my treatments, but I have to completely recover from the colitis first.  Has anyone else developed colitis from their immuno-therapy treatments?  How long did it take you to fully recover from the colitis?  Were you able to re-start treatments?  Any suggestions or advice would be greatly appreciated!  Thank you!

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Savymoo23's picture
Replies 1
Last reply 8/20/2018 - 12:33pm
Replies by: BillB

So I'm basically the most paranoid person on the planet. I just am curious if melanoma can metastasis without going through you lymph system? I couldn't really find much to read on it, mainly looks like it likes going through the lymph system. Thanks guys. Just trying to educate as much as possibe. <3

Savannah Price

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Jenine's picture
Replies 2
Last reply 8/20/2018 - 5:25pm
Replies by: Jenine, AMcReader

Hello All,

My husband is approaching the end of a 2 year clinical trial.  Pembrolizumab every 3 weeks, Peg interferon every week. As grueling as the trial has been, the thought of treatment ceasing is unsettling.

It seems the meds have stopped the growth of a tumor in his neck and sternum, although the tumor in the sternum is still actively present.  The sternum appears to be a very tricky area to treat. 

Can anyone can offer treatment suggestions or questions we can ask Dr. Kirkwood pertaining to sternum treatment?  Any support or guidance would be greatly appreciated.

Wishing everyone good health, love and happiness!

Kindly,

Jenine

 

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Hi! I hope everyone is kicking some melanoma ass. A couple of weeks ago I had a PET scan due to a lump that was growing near my original Mel wle scar from 2016 and the PET was clear except the lump that lit up. My dermatologist did a wle in the office and called me Friday to let me know that there was a lot of scar tissue, but also melanoma within that scar tissue. He said I would need more surgery and more than likely another SLNB. My question is pending the results of the SLNB what treatment options will be offered to me given the clear PET in my organs ? I am assuming some sort of treatment outside of surgery due to the recurrence? I’m going to see my oncologist on Wednesday and want to make sure I’m asking for the right treatment, etc. Any advice would be greatly appreciated. Oh, I live in Jacksonville, FL and am looking for a melanoma specialist, so any recommendations would also be appreciated. 

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I'm currently on Dabrafenib and Trametinib for stage IV Melanoma.  Before I was diagnosed in Feb 2017, I was a medical cannibis patient for several years specifically for anxiety.  I was wondering if occasion cannibis use would have any negative effects with my current treatment?

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/19/2018 - 9:57pm
Replies by: Anonymous

Recently I had a mole on my cheek peel right off. No bleeding or anything, just came clean off. Is this normal? This has happened once before when I was in high school and I ignored it- It started as what seemed to be pimple under my mole. I tried to pop it (i know, i know) and the next day he whole mole came off. It grew back, and now it’s peeled off once again while washing my face... I’m not sure what to think of it. 

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Anonymous's picture
Replies 1
Last reply 8/20/2018 - 1:18am
Replies by: jennunicorn

Hi, I'm a 18 year old male with extreme
hypochondria and it's been really effecting these past couple of weeks. I would totally see a dermatologist if I could but the folks here are those "stop worrying about it" kinda people. Anyways back to the topic. I noticed a mole on my skin more then a year ago and it's about 3mm and is in the shape of a H or an X with blurry borders. I totally forgot about it until my anxiety kicked in about a week ago after finding a bump on my scalp. (Turn out to be just acne..) anyways it drew my attention back to the ugly mole . After examining it for a while I noticed there was little to no change from it. Still, it has me worried. Not only that but I found a mole on the lower part of my index toe a couple of months ago. It's only 1mm and hasn't had any changes to it either. Still, I'm sick of tired of this constant worrying and checking online for hopes of an answer is only leading to more stress. Also a bit more information. I'm barely ever in the sun but I have had sun burns as a kid, I'm native american(with lighter skin then usual), and no one in my family has died from the disease. So should I remove the mole completely? Or is it obviously benign?

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Finn's picture
Replies 3
Last reply 8/20/2018 - 3:54pm

Finally got my referral to a Surgical Oncologist and I have my consult tomorrow morning. Hopefully, I will be able to get my surgery scheduled, so I can figure out the full prognosis of this thing. 

I have been researching everything I can find online about wide local excision and sentinal lymph node biopsy, so I am as prepared as I can be to ask questions and make sure I am informed. I can research until I am blue in the face, but I was hoping maybe for some first-hand experience. 

Anyone have any questions/concerns/info that came up in their consults that were helpful? Or was there a question you wished you had thought to ask, but didn't?

Thanks.

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MovingOn's picture
Replies 3
Last reply 8/19/2018 - 10:52pm
Replies by: MovingOn, kst, MelanomaMike

Hi, I’ve completed 3 Nivo infusions (1 every 4 weeks) and yesterday started what feels like a stomach flu. I have gassy diarrhea. But what I’m more concerned about is that I slept 8 hours last night followed by breakfast for an hour and then a 3 hour nap. Why am I so sleepy? (I’m already on Thyroid meds and hydrocortisone pills for hypophysitis). I see my oncologist on Wednesday at 9am and will contact her tomorrow morning with these details.

For anyone here who has had colitis, were you tired when you experienced it?

 

2018 is a new year!

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