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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MelanomaMike's picture
Replies 7
Last reply 10/1/2018 - 6:50pm

Hi Family! Well, in a few hours ill drive down to see a fresh set of Oncological Eye Balls & discuss a new War Plan! Man! Comon'!! Somethings gotta give here! I mean ya im STILL alive (so ive heard) but Man! My chemical "key" my combination to this Hurt Locker is out there somewheres!. Love ya guys! Ill keep ya posted afterwards...

Im Melanoma and my host is Mike..

www.covvha.net

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AmberM's picture
Replies 2
Last reply 10/1/2018 - 6:38pm
Replies by: AmberM, Janner

Hi all,

I have a very suspicious suddenly black/purple fast growing nodule on my back and am being seen tomorrow in Derm for a biopsy. In the past when I have had a skin biopsy it's been shave biopsy. I am staying away from "Dr. Google" but have read some here. Is it better/prefered to have a punch biopsy? I want to make sure I am the best advocate for myself at my appointment tomorrow. I don't want to just go with a shave biopsy if a punch is better.

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aldrichdesigner's picture
Replies 11
Last reply 10/1/2018 - 12:08pm

Hi all,

Woke up this morning with extreme abdominal pain and I apologize if I get into too many details as I don't want to gross too many people but basically I have impacted stool which caused swelling and inflammation to the small intestines. So, when I finally do go home, fingers are crossed for tomorrow as I have waiting game, but hopefully they get me sorted soon but in the mean time, send prayers or thoughts which ever you prefer

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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MelanomaMike's picture
Replies 4
Last reply 10/1/2018 - 12:05pm

You F...in' spammer scamers need to get the the Hell out of our website! Every damn Saturday i wake up to your Snake Oil scams..F... Off!

Im Melanoma and my host is Mike..

www.covvha.net

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smiller's picture
Replies 4
Last reply 10/1/2018 - 11:01am

  My husband had his last opdivo/yervoy treatment (tolerated three) in June of 2017 for stage four melanoma. CT Scans still show treatment is continuing to work.  Scans look good and labs are good.  The thing is he stil has days that are not good at all.  I am wanting to believe that since scans and labs are good that all is well--or at least better to the point of "bad days" are behind us.  He get extremely fatigued and has stomach issues.  My question is do you think there are other types of tests that he needs?  I realize I need to ask the nurse but I have a job that keeps me away from my desk and it will be very difficult for us to connect, And I realize that this isn't an emergency so I don't need to bother her anyway.  Any insight anyone has on this will be most helpful!

 Thanks in advance,

Jim's wife

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MelanomaMike's picture
Replies 23
Last reply 10/1/2018 - 5:58am

Hi family, i havnt been one to complain to much about any physical side effects either by the "Meds" or the Melanoma itself, cant realy differentiate between the two but, even before the CT reports finding that Sinusitis thing, iv been having head preasure in mornings, and even before the CT report i noticed left nostril would "run" at times maybe a month back..plus im having body aches, knee aches in the mornings lil more the normal these past few weeks..usually goes away after Naproxin, coffee & my Hydrocortisone pills..i will bring all this up Monday to my new doc when i see him..you guys, i have this feeling its "going down" & my lungs are starting to go south, i just hope we can get me back where i was a few months ago, feeling good & happy go unlucky...man!

Im Melanoma and my host is Mike..

www.covvha.net

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Foothillfoundling's picture
Replies 5
Last reply 9/30/2018 - 12:17am

Hi All, Fiance had his 4th Opdivo infusion on 8/3/2018.  After this last infusion: typical fatigue, face a bit puffy but this time his headache has been ongoing.  He has been taking Tylenol, Advil, Aleve (I know.....not good) and they are not helping.  Oncologist had scheduled him for “an infusion” for the headache.....no idea what this “infusion” may be?  Today Onc decided she wants his MRI done first (this is his first scan since he began treatment.). MRI is now scheduled for tomorrow morning with the “mystery” headache infusion to follow at 1pm.  His monthly 480 Opdivo infusion is scheduled for this Friday ( this will be number 5 of 12.)  Any one else experienced the constant headache?  If so, what did you do?  Is this normal?  Thanks so much for sharing your experiences.  I check in often for updates and truly value all the information.

VicnRan

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MelanomaMike's picture
Replies 13
Last reply 9/29/2018 - 11:50pm

Hi family, alotta you know Whats up with me currently (3 diff Immunol meds arnt working for me), my question is, is it safe to say that trying Chemo meds like Interferon, Interleukin, Proleukin and other types not a even worth trying? Is that like going backwards? Im gathering that those meds have very little success with our desease compared to the Pembro, Ipilimumab & Nivolumab that iv done already...just curious! Please share..thanx!

Im Melanoma and my host is Mike..

www.covvha.net

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Roxanne218's picture
Replies 24
Last reply 9/29/2018 - 8:52pm

Senator John McCain was diagnosed with melanoma in his past - did you know? He had 4 of them excised, one being more serious at 2.2 mm depth. He had the SLNB for this which turned out negative. I was wondering who else here with 2.2 mm or deeper has had negative node biopsies. Mine was 2.6 mm and non-ulcerated, but I opted for no SLNB for personal and educated reasons. Curious...

Roxanne

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Bradley75's picture
Replies 8
Last reply 9/29/2018 - 4:22pm

Hello Melanoma Family,

I had my routine 3 month PET/CT and MRI yesterday.  I have two new spots that they are calling very concerning for metastatic disease.  As the seasoned veterans around here will tell you, that does not cause panic anymore.  One spot in my somewhat educated opinion, is probably a reactive lymph node and nothing more.  I have had a half dozen of those over the years.

The 2nd spot is the reason for my post because I have never heard of this one before.  I have a spot between the two butt muscles in my right butt cheek.  I must say I laughed a lot about that yesterday when my onc told me and while I was receiving my 26th round of Pembro.  The spot is really small so we are going to wait and re-scan in 6 weeks.  I have had all kinds of mets over the last couple years, but this one has me stumped.  I doubt there is a lymph node back there so I am preparing my mind for having to treat this one.  Anyone ever heard of a butt slab met? 

I am not ready to say the beast is back, but my NED status is in jeopardy.

-Brad

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Tracyyy's picture
Replies 2
Last reply 9/29/2018 - 3:56pm
Replies by: marta010

Has anyone had eye/vision problems while on the Taf/Mek combo? Seems like my mother is going through all side effects. Now she has blurred vision, red eyes and mild headache and I am freaking out. She is seeing her oncologist and ophthalmologist on Monday.

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Anonymous's picture
Replies 23
Last reply 9/29/2018 - 3:43pm
Replies by: Anonymous

I have no diagnosis of any skin cancer. A few days ago, when I got out of the shower there was an itch on my skin under my left forearm. I looked down, and saw this weird reddish bump where the itch was. I wondered if maybe it was allergies and thought that wow this is one heck of a reaction. The itchiness has subsided over the past few days, but the weird bump is still there.

Characteristics:

Location: Under left forearm on skin.

Size: Nearly the size of a U.S. penny on one side (19.05 mm), and shorter on another side.

Shape: A kind of irregular elliptical shape, asymmetrical. Some concave areas.

Color: A generally reddish color, with a more pinkish color near the border on one side. A few dark specks that I guess are dead hair follicles.

Feel: Still a little itchy. It is raised above the skin.

Relevant features: I am light-skinned with natural blonde hair.

Picture: Not very good, as I don't have a camera other than my big heavy laptop, but the bump should be clearly visible.

I'm going to walk in to my doctor's office today, as they have walk-ins on Saturday. In spite of the lack of dark colors, my fair features make it still cause for concern. The abrupt development of this "bump", its persistence, and its characteristics have me concerned.

 

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MelanomaMike's picture
Replies 6
Last reply 9/29/2018 - 9:35am

Hi ya'll, our sister Elizabeth123 needs our prayers & support for her husband "Ezio" who is fighting the HELL out of our shared desease, he has been through so much treatment & its been hit & miss (read some of her post's about him) They've recently added Yervoy (ipi) to his treatment & lets see what goes on. Please guys, All hands on deck for Ezio...

Im Melanoma and my host is Mike..

www.covvha.net

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VinceMart's picture
Replies 16
Last reply 9/28/2018 - 1:25pm

Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

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