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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Belltown's picture
Replies 3
Last reply 9/19/2018 - 1:24pm

Found this board many months ago and have found it incredibly helpful.  This is my first post.  

My younger brother, age 57, has Stage IV Melanoma and has been on oral targeted therapy (dabrafenib and trametinib) for 10 months (since November 2017.)   His oncologist just told him today that he wants to switch him to ipilimumab and nivolumab via I.V. infusions.  I have done enough reading to have a good sense of what this means and why, but I can't find anything that indicates the interval between stopping the oral regimen and starting the I.V. regimen.   Does anyone have a sense of what that could be?  Thank you.

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Hi,

 

I'm 22 yrs old and I recently noticed a small nodule near my neck. 

I took an appointment with a dermatologist as soon as I've seen it. 

It's there for about 1 month and a half, but at first I didn't research on it because it came from a pre-existing mole and the mole was just getting a bit bigger. so I thought it was normal...

Now there's a small nudule (1,5mm).

I have a biopsy next wednesday and i'm stressed out.

I know that it's not a good idea to look on the internet, but it says that most of Nodular melanoma are already in a advence stage when you can see it or touch it...

I'll wait for results... Hopefully it's not deep and I can cure it.

Anyone have stories on a nodular melanoma? 

Is there a lot of chance I survive ? 

I'm scared.

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Bubbles's picture
Replies 3
Last reply 9/19/2018 - 11:21am

I will never be able to fully express what your outpouring of support has meant to me over these past weeks.  You have all been a light in my darkness.  Your messages on the board, my blog and via email have warmed my soul, brought sweet tears, and made me laugh.  These are no small things!  I have also been enjoying a beautiful bouquet!  While I am unsure where to direct my thanks specifically, it has been a lovely treat.

MPIP is indeed a special place because of each of us!!  Yes, just as in families and the best communities, we each have our own special niche.  It often falls to Janner to help coax the newly diagnosed down from their perch with grace and patience, simultaneously walking them through their path report with skill.  I have seen many more of you stepping up here as well.  Yes, I have long been the resource for "data explained", researched "one more option" for my dear Stage IV peeps in need, and certainly pursued my various soap boxes over the years....

+ YES!  Immunotherapy works in the brain!!!!!!!!!!!!!!
+ YES!  People deserve anti-PD-1 even though ipi is available!
+ Adjuvant care is real and valuable and needed!!!
+YES! YES!  YES!  Radiation and immunotherapy work better together and therefore can and SHOULD be administered together!
+ YES!!!  You can and SHOULD treat side effects of immunotherapy, even with steroids if needed.
+ Immunotherapy takes time.  Be patient with the patient.

You've heard them all!  Over and over and over!!!!  But, the good news is ~ I almost don't have to say them anymore!!!  In the beginning, when the world was new and there was no treatment for melanoma (anytime before 2011!!!!) and the years immediately following, it was a battle to get local oncs to provide access to the care we gradually had coming on line!  But thanks to all of you....we've come a long way baby!!!

As to researching help for those in need...there is no one who can find the right expert, talking about the right thing, at the right time and HOOK YOU UP!!!!..better than our dear Edster!  He may be only a mouse, but he is a keeper!!!  Eric W is a researcher extraordinaire and has become a force to be reckoned with in parsing trial exclusion criteria.  Partially due to their own travails, Brain P, Bill, Mat, Gary, and many others have become excellent advocates and experts at outside the box treatments...TIL, immunotherapy combo's...sharing what they've learned with skill.  I think we all need to work to make sure that intralesionals (like PV-10) are employed when they are an option, given the data and responses like those of Texmelanomex!!  (Yes, I know.  I'm still pushing!)

Mark_DC, Niki (Cancersnewnormal), Susan (Casagrayson), Sabklyn, and so many others give out thorough, intelligent caring advice daily.  Julie (Julie in SoCal) {Who has damn sure been through more than her fair share!!!!!} and Jenn (Jennunicorn) do the same with some good intell for those seeking adjuvant care.  We are truly blessed to have saints among us ~ Rob (Adriana Cooper) and Maria (maperny) ~ still here for us, holding us up in spite of their own great personal losses.  And while all voices and hugs come through the internet (Just like those t cells in the brain!!!!  I'm telling you!!!) some like those of Scooby and Melanomamike shoo the darkness from every corner!!!!

And, since there is no Camelot, we do need our deputies who keep our world productive and supportive.  Perhaps, because he is a mouse, The Edster can smell at rat at 20 paces!!!!  And while we love and admire ratties, folks here to cause strife, mislead, sell us "REAL LIVE COUNTERFEIT" - are not welcome.  Mike, Beth, NSNewf, and many others have proven their dedication in keeping this board a helpful, caring, and safe place.  You can bet that any number of our peeps will be ready to answer any newly arrived crackpot, touting, "When you imbibe only blue M&M's, taken three at a time, the third Wednesday of the month, just as the sun sets below a lone cloud...your melanoma will be gone!!!"  ...or any other sometimes more legit sounding shenanigans!!!  I mean to each his own, but we have to protect those still uninformed and desperate among us!  But, y'all don't need me to tell you that!!!

And that's the point isn't it?  Y'all got this!!!!  All of you I noted and the many, many, many other dear peeps I have not (though you are bright in my mind!!!!) ARE MPIP!!!!!  It is just that simple.  YOU are what makes the forum valuable in ever so many ways to ever so many peeps across the globe!! Keep up the good work.  It means more than you will ever know. 

This is not goodbye.  Lord knows, I could be in a rant on the board tomorrow!!!!  You all know I have never been one for secrets.  So, I wanted all of you who had interest to know that I have not dropped off the planet.  I will still be around.  You can always reach me via this board or my blog.  But, I have a long way to go...  And I'm not even sure where I am going.  That doesn't mean I won't get there!!!!  But, it might take me a minute.

You have no idea the kick it has given me to see "melanoma peeps" and "ratties" and "Melanoma sucks great big stinky green hairy wizard balls!!!!" become part of the vernacular!!!!!  I have loved every "Eeeeecccckkk, eeeeecccckkkkk. ", dear John!!!  It has been a rare privilege to be a trusted friend in each of your lives.  Much love always, les
 

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MelanomaMike's picture
Replies 4
Last reply 9/19/2018 - 8:29am

Hi ya'all, well, lets see here in the next few days what the Yervoy & Opdivo has done for me, God please let these newer meds be my "key", my combonation of sorts to all this nonsense! Iv never held my breath for a NED report, im happy to see tumors just shrink or not do anything at all!! Keytruda worked on a few Tumors months back but, nowhere near what it should have after 7 bags...
My Scan Tech & i browsed through the footage as best we could, i was kinda worried about my neck like i had expressed earlier, nothing really jumped out at us but, with all due respect, the CT,MRI, PET readers/decipher'rs have software that breaks them down to specific images so, maybe i am holding my breath! Lol...
Ill keep you posted..love ya guys..

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Savymoo23's picture
Replies 5
Last reply 9/18/2018 - 8:25pm

Ugh I'm just stressed out guys. It feels it's a permanent feeling at this point. My husband and I have taken a break from each other, I haven't had a normal "cycle" in awhile from the stress (Thats a period for my male friends haha). I have horrible kidney pain (UTIs turn bad for me haha) and all my kids were in the hospital with pneumonia. GAH! Talk about a big pain in the ass. I'm sorry I'm just ranting but between all these appointment, no sleep, bad health, a shitty marriage and my kiddos....I want to have a mental freak out. I just want to say thank you for being here for me guys. I know we all live all over and don't "know" each other but I've been blessed to know y'all. Good vibes please. Oh and waiting for my CT scans IS SO STRESSFUL!    

Savannah Price

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MelanomaMike's picture
Replies 16
Last reply 9/18/2018 - 11:50am

Hi family, just checkin in, not that iv been gone, im usually throwing my 2 cents in on folks post haha..
But anywho, today is the BIG day, my 1st scan since i started the Yervoy/Opdivo war plan, got thru the Yervoy thank god, and just completed Opdivo #5 a week ago, (#6 Opdivo this Friday, now every 2 weeks) so, comon man!!! I need some good news, Keytruda didnt pan out after #7 bags so, COMON!
This particular scan will include my neck this time, normaly just Chest, Abs & Pelvice, iv had some pains on the right side of my neck for like a week now, i was thinkin its way i sleep??, of course im thinking the worse...
So, scan is set for 5:50pm today, results in a few days...Mike

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Scooby123's picture
Replies 1
Last reply 9/17/2018 - 9:51pm
Replies by: WithinMySkin

Hi my beautiful people,

has anyone had liver count rise due to having surgery with anestetic. Had surgery in July and had one treatment of keydruda 3 weeks after surgery and liver count up. No treatment till comes down , not on steroids either to help as my count came down week later without steroids. So plan leave another 2 weeks see if normal then resume treatment. 

Any experience with liver count going up much appriciated.

 

Scooby❤️❤️

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dsfarms13108's picture
Replies 6
Last reply 9/17/2018 - 8:47pm

has anyone been on keytruda for a while and then developed  colitis because of the keytruda ?  i have been on keytruda for 5 years and just 2 weeks aago  came down with keytruda induced colitis -now they are thinking of kicking me off treatment and watching and waiting and im freaking out because they are saying i probably cant go back to keytruda -and i need to know what else is out there that wouldnt do the same thing -im on steroids and antibiotics right now for the colitis but i know this melanoma runs like wildfire and it scary to think they are just going to watch and wait 

please advise if anyones been in my shoes 

 

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MovingOn's picture
Replies 2
Last reply 9/19/2018 - 11:35am

I had a second batch of affected lymph nodes removed in late March of this year. Then my July 28th CT scans were interpreted by the radiologist as ‘likely metastasis’ around the same area (they are lymph nodes swollen to 1.7cm but still have the normal kidney bean shape rather than the rounded metastasis shape). My Oncologist thinks they are just infections and prescribed antibiotics for 10 days. Many of the inflamed areas went down but not the ones in the most concerning area. We are going to scan again at October 1st however, the previously inflamed areas have all puffed back up again because I finished the antibiotics 5 weeks ago. 

I’m at a loss regarding how to find out what these inflamed lymph nodes really are (recurring infection from Opdivo or melanoma recurrence)? 

Also, I feel like if my Oncologist can’t get things figured out (after 4+ months of this swelling) then I’m going to get a second opinion up in Los Angeles (2.5 hour car ride). 

2018 is a new year!

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Dave61184's picture
Replies 11
Last reply 9/19/2018 - 12:32pm

Hey all prayers for all.. I’ve been in a depressed haze (stuck inside due to hurricane) and I know I shouldn’t spend the day and night reading blogs post and everything under the sun. But is there any hope for 1aers all I see is bad outcomes. People having 1a then boom couple months/years stage 4. But anyways idk what I’m trying to say or think anymore. Hang in there all. Praying for everyone.

.3mm deep melanoma no ulceration no mitosis 

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 To all warriors,

      My husband Bill has had stage 4 acral lentiginous melanoma for over 5 years. His treatments have been vats surgery, TIL at NIH, ipi/ nivo trial, vats surgery, nivo alone, vats surgery and for the last almost three years a her-2 drug after Sloan Kettering discovered he had a high expression of the mutation. He just had scans last Monday and after being stable since the start of the drug he has two new lung nodules in the right lung that has had 3 vats surgeries!!! It’s so damn frustrating!!! They will do a biopsy this week so Sloan Kettering can do an analysis again. Because his platelets are around 85 for the last three months and his liver numbers are very high, we are extremely concerned about doing another her-2 drug combination that includes chemo. SOLE suggested cryotherapy and we’re seriously considering it. We live in the Washington DC area, but are very willing to travel if necessary. My husband feels great and in fact is playing 18 holes of golf today. Any advice is very welcome!! Thanks so much!!

Maureen

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Bubbles's picture
Replies 20
Last reply 9/19/2018 - 8:10am

Hey guys!  You have been such an amazing fountain of strength and support for me over these past weeks!  (Damn!  Weeks!!!)  You have no idea how much it means.  I've always said that melanoma (ALL cancer!!!!) sucks great big green hairy stinky wizard balls.  But the folks on this board have enough love and support and humor and courage to get us all through whatever we are dealing with.  So sorry for what Maureen and her husband and Jagstter are facing as well as the rest of you out there.  

Here's the latest on my crazy mess as of this am:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/09/lordy-lordy-lordy-what-bunch-of-gaum.html  

There is a small additional update to even that, in that they just removed my epidural.  Little scary to say good bye to pain control...but it is a necessary step toward getting rid of my other bells and whistles and heading home!!!

Thanks again to each and every one of you.  Your love is tangible.  It is real.  It helps.  Love, les

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MelanomaMike's picture
Replies 2
Last reply 9/15/2018 - 6:28pm
Replies by: MelanomaMike, bjeans

Why in the hell is Saturday Morning such a religious time for these Hodji idiots to post their crap? Well, atleast we know our higher ups, The Big Whigs, The Brass, The Shot Callers are on it, please guys, i feel invaded..Mike

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/16/2018 - 10:03am

Hi All,

 

I was diagnosed in March with Stage 1a. .38 so it was just past in Situ. I am 36 and have 2 little kids. Wanted a 3rd but now thinking twice after my diagnosis. It’s been 6 months.

Has anyone had kids after a diagnosis? Would love to hear your thoughts. 

love to all! 

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