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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MelSettle's picture
Replies 6
Last reply 5/31/2018 - 10:32pm

3 weeks ago I had 3 suspicious moles removed and today the dermatologist called and said that the one on my back/flank area was melanoma. She said it was shallow at .2 mm and that I would need to come in next Wednesday to get more removed to check the margins. I am so anxious and trying to figure out what all of this means? I seriously feel like I might be about to have a panic attack. You can't really get a staging until they remove the tissue around is that correct? Will it take another 3 weeks to get those results??? Thank you so much for any insight. 

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Julie in SoCal's picture
Replies 9
Last reply 6/2/2018 - 4:14pm

Hi there friends,

Just want to update you on my plans. Tues. I had scans and saw the Rock Star Onc Doc.  And the good news is that my scans are clear; there's no funk, no nothing, completely unremarkable.  I love it. This was the best news yet.

When I talked with the Rock Star, I asked him about trials that have an intertumoral injection.  We talked about them for a bit.  Surprisingly, I might qualify even with NSCLung Cancer, but RS Doc didn't want to hit me with anymore PD-1s at this point in time.  I had some pretty severe joint pain (ok it nearly crippled me) and I'm just now recovering (second new knee is coming next month!!), so this made sense to me. 

So the plan is to together with RS Doc talk with a surgeon and see about if ultrasound could help identify all of the hiding Mel babies in my arm.  And see if we could just cut them out.  This also makes sense to me.  If there not in my arm they are not having babies and sending those babies on a journey to my lungs or liver or... But we're just talking  and thinking thorough options.

I haven't talked ILP with the Rock Star.  So far all my mets have been in my arm, so theoretically this makes sense to me.  But it seems rough and the poor arm has lymphadema and I can't imagine it would be happy going through ILP.  Thoughts? I'm just talking out loud at this point.

Thanks for listening, friends!

Peace!

Julie

(still not a robot)

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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AMcReader's picture
Replies 6
Last reply 6/1/2018 - 2:59pm

My first brain MRI since starting Nivo in april quickly approaching (June 11). The full PET scan won’t be for a few weeks after that but since I’ve already had a brain met that was removed via craniotomy, I’m especially anxious for this first scan. Does anyone have any advice or insight into how you’ve managed “scanxiety”? After a few months of feeling relatively normal, melanoma is all I can think about for the past several days...

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two small lung mets. Started Opdivo 4/16/18.

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tedtell1's picture
Replies 1
Last reply 6/3/2018 - 7:41am
Replies by: Anonymous

Hi friends;

I have had a white spot on the back of my throat for a month now. It hasn't gotten smaller and is maybe a little bit bigger. I have had mouth sores from my treatments, those generally came and went in a couple of days. This isn't very painful like the other sores and really weird that it has lasted so long. Went onco today, they are sending me to ENT next week for check/possible biopsy. Anyone experienced this. It is about 2-3MM across, a little bigger than my other sores have been. White with some redness around it. Also dealing with continous belly issues despite the prednisone so am going in for a colonoscopy....it will be a fun week next week!

Thanks everybody,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Alovingdaughter's picture
Replies 5
Last reply 5/31/2018 - 8:36pm

Hi there. My Dad is stage IV with mets in his lung and bone. He started Yervoy/Opdivo (first infusion was last week Friday), and so far he is feeling great and full of energy. In no way do I wish him nasty side effects, but the worry wart in me can't help but wonder if no side effects so far means his body isn't responding to the immunotherapy? Can anyone shed some light on this? We are 6 days our from treatment #1, so it may be too soon to tell?

Thanks in advance. I've read all the posts in this forum since January 2018 (working my way back in time!) All info found here has been incredibly helpful.

Amanda

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/1/2018 - 10:27am
Replies by: Anonymous

Hi I’m brand new to this site & was wondering if we are allowed to post pics on here when seeking advice? 

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Anna.helena.gray's picture
Replies 2
Last reply 6/1/2018 - 9:02pm
Replies by: KAF, Anonymous

Hey everyone I'm just wondering if anyone else has or is experiencing hair loss after their diagnosis possibly not treatment related?
I haven't started treatment yet but I seem to be losing more hair than normal and I am covered in bruises but that may just be my 2 year old!

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HeidiZ's picture
Replies 3
Last reply 6/18/2018 - 12:15pm
Replies by: cancersnewnormal, Becky

Can cutaneous melanoma spread to the mouth, and if it can does that mean you now have mucosal melanoma too?  My original melanoma was on my scalp but my melanoma surgeon always looks into my mouth during my exam?  He says he is checking for melanoma.  If he did find melanoma in my mouth, let's say my tonsils, wouldn't that mean that I now have mucosal melanoma too? Thanks. HeidiZ

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BillB's picture
Replies 5
Last reply 6/1/2018 - 11:08pm

On the train heading out of NYC, then 4.5 hour drive home. Side effects still fatigue and joint pain. Nothing else significant to report. Wishing good luck to everyone fighting this battle.

Bill

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MelanomaMike's picture
Replies 7
Last reply 5/31/2018 - 2:30am
Replies by: QuietPoet, BillB, Hukill, Coragirl, dessie, jennunicorn, Anonymous

Hi Family, well, as ya know, i went to the ER for 5 hours only to be told i was ok hahah, did blood work, gave my an IV gave me crakers, applesause & what not and i was ejected out their roof {yet safely landed pretty damn close to my car} i had them notify my Oncoligist {which they did} all they gave was another type of anti-nausea called Compozine {pills} which is way better then those "melts" sublingual crap called Zofran wich mind you, is nasty as hell when yer stomach has been on "E" for the past 2 weeks, the Compozine ya just wash it down with a bevredge...Still, nothin given for hunger!! and my wife told me to request a med called Megace, no such luck.....well, God works in mysterious ways, my wife is a caregiver to an elderly man named Max {bless his heart} he just passed away Sunday nite {not on her shift} but nevertheless, she drove over there to give respect to the "son" Corey, &  and before she left she asked about "Megace" which was one {of many} medications Max took, my wife asked if she could take it home for me, no problem. ...Check this out! "2" teaspoons within 24hrs and my Hunger is back pretty much to normal!!! {WITH NO HELP FROM Kaiser} and the CBD/THC oils have been great for pains {and nausea for the most part}...So, in a turtle shell, my wife & I treated my own side effects! wtf? i hadnt eaten in almost 2 weeks! i thought the CBD & THC oil would do me right with the hunger, heck no! wich is odd to me, but works fab on knees leg pains...My strength is coming back, i dont feel like "wasting" as its called cause i was headen down a very dark paith by not eating, everything i put in my mouth was not happening except yogurt, apple sauce, Ensures, bevridges, but a man cant live off Liquids alone! knock on wood, im gettin stronger now guys!!! im back in the saddle!  i do ipi/nivo combo #2 Friday, June 1st, BRING IT ON! i have my own remedies now! haha...take care extended Family, you all freakin Rock! yer inputs & encouragements have been explosive to my heart....Mike PS: Whats with the Im Not A Robot {reCAPTCHA} thing now? didnt know Robots where susceptible to Melanoma?

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Shelby - MRF's picture
Replies 1
Last reply 5/31/2018 - 11:17pm
Replies by: MelanomaMike

Dear MPIP Community:

The MRF is conducting a needs assessment to better understand the educational needs of melanoma patients, families and caregivers. Woud you be willing to spend 10 minutes filling out a survey that will help us improve resources and better understand the unmet needs of the melanoma community? 

https://www.surveymonkey.com/r/MRFstudy

The survey closes on May 31st. Thank you for all you do to support the MRF and the melanoma community.

All the best,

Shelby - MRF

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Jahendry12's picture
Replies 1
Last reply 5/29/2018 - 6:59pm
Replies by: MelanomaMike

Just wondering how you're doing Mike? 

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JuTMSY4's picture
Replies 5
Last reply 5/31/2018 - 9:46pm

I've been getting back outside a lot - Keytruda not getting me down.  Who's got some recs for good sweat "resistant" (or as resistant as it can be) sunscreen.  Looking for fewest reapplications.  Bonus points if you've got good ideas for the beach as well!

I mostly run, bike and play softball.  My family loved the spray on stuff, but I find it's application is tricky (impossible to be sure you covered everything) so I tend to stick with the standard tubes/bottles of white goo - usually just the store brand.  

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Fighter_JSS's picture
Replies 1
Last reply 5/29/2018 - 8:19am
Replies by: marta010

I've had a bad day side effect wise. I'm beyond fatigued and had nausea earlier in the day so I ended up eating a full meal at 8pm way later than my usual dinner. Without thinking an hour later I took my 2 taf/1 mek pill...facepalm. Am I gonna be okay? Should I call my team in the morning? First time I've done that.

Also has anyone experienced pain behind their knees and armpit joints?

Thanks

Stage 3a Braf+ new fighter

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lisa joy's picture
Replies 7
Last reply 5/30/2018 - 3:24pm
Replies by: lisa joy, Janner, BillB, Anonymous, jennunicorn

Hi! Thank you to everyone that has been helpful on this site/board for those of us still learning about Melanoma. 

I am two years today from finding my stage one melanoma. I have a question regarding scans. 

I seem to have a very proactive melanoma doctor. After my surgery to remove my melanoma (Stage 1A, .75mm)... I had a brain MRI, and a full body PET/CT scan along with one lymph node removed. All was clear. 

For the past two years, I've been going to my derm and my surgical oncologist every three months to check skin and lymph nodes. I've had several more moles removed but all are fine. I also had the Decision (Castle) test and I was Class 1 risk. 

My surgical oncologist suggested I have another full body PET scan since I'm at two years?! I just don't understand why?  I've read where scans at my stage are not necessary? AND my insurance doesn't cover it and I truly don't want to pay another $5000 out of pocket. 

My dermatologist tells me it is not necessary. I just wanted to post here and get anyone's thoughts on it. 

Thank you so much!

Lisa

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