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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Hi All,

   Bill is in his sixth year of this disease. After being stable for almost 3 years he has lung nodules again. He is starting the Cleopatra regimen for breast cancer since he has the her-2 mutation (Sloan Kettering testing) and immunotherapy stopped working. 

   I greatly admire people on this board who remain positive despite difficult circumstances. I’m having trouble getting my fighting spirit back so I can help bill. Please help.

 

Maureen 

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Mk517's picture
Replies 2
Last reply 10/10/2018 - 11:12am
Replies by: doragsda, JuTMSY4

Sorry this is a little long... I have never posted before but have found this group very helpful since my diagnosis.

I was diagnosed in January with stage 3 melanoma with unknown primary. I had a large lump under my arm which was biopsied. I then had an axillary lymph node dissection. My initial pet scan had, what my doctor called, "some minor areas" that lit up but nothing was enlarged so it could just be physiological activity and that they would be treating me as NED - adjuvant treatment of taf/mek, but I couldn't tolerate the mekinist so now I'm just on tafinlar.

Fast forward now to my 6 month scan... CT is ok but shows an "indeterminate lesson" on my liver so they recommended an MRI. Had my MRI with contrast which now shows 2 lessons on my liver - 1 "most likely a hemangioma" and the second "indeterminate". And also an indeterminate lesson on my spleen. So they are recommending PET.

In addition to the obvious reasons of worried, I'm concerned that the PET will lead to a false positive. There's nothing concerning in any of my abd/pelvis lymph nodes, so would they melanoma really skip that and go to my liver? I'm 35 years old with 2 young kids, and while I know that the worry will never completely go away, I was hoping that I could "move on" after my year of treatment.

Any similar experiences or encouraging words are welcome! Thank you all for reading.

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VinceMart's picture
Replies 14
Last reply 10/10/2018 - 8:47am

Hi fellow fighters,

I was wondering if anyone has any updates as to how they are doing on Braftovi/Mektovi.  I know there are only a few of us currently on this treatment.  I have been on it since early July and have a scan in a few weeks, however the lump in my arm has not decreased in size at all and I now have another.  I haven't seen anyone new mention they have tried this and am looking for some feedback is possible.

Take care everyone,

Vince

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Bubbles's picture
Replies 6
Last reply 10/10/2018 - 6:16am

...I put this post together out of a ton of melanoma intel that B was kind enough to plow through! 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/10/melanoma-madness-links-asco-and-others.html

Take it as you will.  I think the ASCO Educational Book might prove to be a helpful resource now and in the future.  I wish you all my best!!  celeste

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MelanomaMike's picture
Replies 11
Last reply 10/9/2018 - 10:11pm

Hello to my MRF bros & sis's! Sorry for my MIA of sorts, last 2 days have been "Blah" for me BUT! today is a good day, yesterday it didnt help that i got up at 4:30am and stayed awake, my normal wake up call is like 6:45am/7:00am like clock work, im usually in bed by 10:30pm..8hrs is good for me otherwise im all out of whack!!...
So, i see my "3rd" fresh Onco eyes this Wednesday, my primary Onco really wants me to go see him (the one in Riverside) i was gunna cancel but ended up promising her after she insisted i see him so, 120miles round trip and guess what? My cars Air Conditioner took a dive a day ago! Thank God its been cool here in So. Calif. at 76° ish 80° tops these past days, but, were known for temp increase to 100° in a days time!.. I see my lung surgeon next week for consultation, probably surgery week after! (Right Lower Lobe removal) im getting Battle Ready mentally!
Ok ya'all, have a good week & hope yer side effects and effects of Melanoma are at a low roar, love you all..

Im Melanoma and my host is Mike..

www.covvha.net

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susanmcd's picture
Replies 2
Last reply 10/9/2018 - 8:55pm
Replies by: Bubbles, ed williams

Hello Friends:

Can someone help me understand the significance or lack there of of being BRAF negative or BRAF positive as it relates to melanoma prognosis.

Sending hugs to all.  Thanks in advance!

Susan

Susan Kennedy

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TexMelanomex's picture
Replies 7
Last reply 10/9/2018 - 12:55pm

Hello Warriors!!

I apologize for my long absence from the forum, there is so much that has happened here in the past 6 weeks or so...I'm still catching up on everyone.

I wanted to give you all a quick update to let you know that I'm still kicking down here in the Republic of Texas. I'm back at MDA for my quarterly scans (has it been 3 months already!?!?) and my next round of Pembro. Everything has been good since I last posted and MelanomaMike was kind enough to post an update for me a few weeks back. Obviously I'm hoping for a continuation of NED status after tomorrow's scans but I stand ready to lace up the boots and jump back into battle.

I hope this finds you all doing just as good as possible and continuing to take the fight to the enemy with ferocity!

Tex

Tex

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Ebugsmom's picture
Replies 4
Last reply 10/9/2018 - 12:46pm

So, we do not know anything yet...but I am scared. My 16 year old daughter saved the sides of her hair and we discovered a mole. White and raised in the middle with a jagged dark ring around it...6mm...and a family history. We see Derm on the 18th and I am freaking out! She doesn't seem concerned, no one really does. But I am in nursing school and have seen the ugly side of cancer. Any help, words of encouragement...anything...is appreciated.

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Nick C's picture
Replies 19
Last reply 10/9/2018 - 12:43pm

Started a new clinical trial yesterday...13 hours at the clinic. Back again today for EKG and blood draw. Same schedule in two weeks. Its been a fun and interesting 7 days... eye exam, heart exam and CT in a two day period. Trial drug is in pill form, taken weekly,  and is an ERK inhibitor. Immunotherapy drugs didn't work for me...so onto a new strategy. I'll keep you posted on results.

NIck


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MelanomaMike's picture
Replies 7
Last reply 10/9/2018 - 12:28pm

Good Morning Vietnam! Hows my MRF extended Family? Im feeling pretty good, cant complain, side effects are at a low roar probably cuz im going on month of no Opdivo (stopped due to desease progression) i mean, i still have the Pituitary & Adrenal gland problem, but as far as the ol knee pains, etc. That all seems to be subsiding wich is nice for the time being..
In case some of you missed my latest Report, Opdivo was stopped due to progression, mainly cuz the "big" tumor i have (in RLL of lung) is gettin bigger quick! 2.4cm to 5.4cm in like 3 or 4 months so, im to have a Surgery on the big sucker then go back to the Opdivo, all other tumors did in fact respond except the big guy..
But anywho, im gunna watch my fight tonight at a local Irish Pub & watch my main man Mr.Connor McGregor knock out that Khabib cat, should be a breeze for Connor, havnt been out in awhile doing something fun in forever...love you guys & gals..

Im Melanoma and my host is Mike..

www.covvha.net

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JennH's picture
Replies 9
Last reply 10/9/2018 - 11:54am

So here's my story, I'm curious if I am just impatient and this is how things go...

On August 20, I went in to the Derm to have 2 moles looked at. The second (on my bum)  I almost didn't say anything about since my regular doctor had told me it was some kind of dermoid or something. (at this point it's been there 3-4 years)

So the interim doctor did a shave of my eyebrow and bum. Two and a half weeks I called since I had not heard anything back, well there were no notes. 2 days later (09/6)I got a call that I needed to come in today for a picture. The regular derm said over the phone that I had spitzoid melanoma and went on and on and I did not grasp anything she said. I came in later that afternoon, she took a pic, expressed her frustration that it hadn't been done the first time, and shaved it down to the fatty layer. Oh by the way this is the one on my bum. In the meantime I'm told not to goodle anything and that there is not much known about this type. okay, yeah, right. Do you know me?

They sent it out again and comes back Clarks level at least a IV, Breslow at least 2.5mm and focally transected at the base and the tumor extends to the deep margin. Mitotic index is less than 1 per sq mm.

Now I am sent to a plastic surgeon to have my bum cut off and a sentinel node biopsy scheduled. This will happen 10/18. 

In the meantime, I am wondering why I'm going through all this. Yes, I understand melanoma is cancer. but I don't understand why. I am not sick, I have had this for years with no issue. And now i am to undergo a MAJOR surgery that will leave me on my belly for minimal 2 weeks. 

Does it really take this long? Should I be concerned? I am starting just to get angry. i certainly don't need to be caressed and be told everything is going to be okay, but I'd like to know more about what is going on, and not feel like I'm "going through the standard process". and no Madam social worker, I don't need something for anxiety, I need to be educated on my condition. 

and I hear about people having scans and x-rays? Is this something I should ask about? Or does it come after...

Well, there you go, 

I'm open to comments, is this how it goes? or should I be looking elsewhere for care? Thanks!

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HKitts's picture
Replies 4
Last reply 10/9/2018 - 11:34am
Replies by: JuTMSY4, Janner, iskitwo

I wasnt worried til today... Its been about a month sunce ive noticed this spot... Ive tried scraping it away, cutting my nails short as they'll go trying to get rid of this spot... It hasnt grown out or anything...it just simply looks like a freckle but it isn't, its not all brown.. And I have a problem with letting my toe nails grow long, so I see them at least once a week up close and personal... This spot is fairly new... Ill give it two more weeks and if it hasnt moved ill call my doctor.... Anyone else ever have this? I have a pic, just cant post it here

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Hi there. 

i had a melanoma in situ diagnosed a year ago and have had many moles biopsies since then that were all fine. About 6 months ago I noticed a tiny mole on my arm was changing. My derm ( who is a melanoma specialist) said it was fine. Now it’s got a lot blacker. It’s still tiny but I have a picture of the mole from before and it looks completely different now. 

Derm decided to biopsy it when he saw it again last week - but said he thinks it’s fine -  which is being done today. Im so stressed about it. I was so hoping at my last app that I would be moving to 6 monthly visits and now I have this stress again. 

Has anyone had a mole that changed from brown to black and changed size that turned out to just be a normal mole?

 

thanks guys. Just nice to chat to people who know what I’m going through ! 

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/8/2018 - 9:07pm
Replies by: Janner, MelanomaMike

.93 melanoma, stage 1b.  No sentinel node biopsy. Was told skin checks every 3 months.  A new dermatologist says every 6 months meets NCCN guidelines.  Who is correct?  Thanks.

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aldrichdesigner's picture
Replies 19
Last reply 10/8/2018 - 5:51pm

Think we could all use this boost from time to time to understand just what's possible these days. All survivors please respond but I'm selfishly interested in the stage 4 numbers ...

I'm going on 1.5 years since being diagnosed stage 4 and another 9 before that when they found the primary. So I'm already at 10.5 years since my very first positive biopsy. Currently stable and on keytruda and really hoping to get another 10.

- - - 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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