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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DZnDef's picture
Replies 2
Last reply 6/24/2018 - 12:33am

Late February, after having stopped Taf/Mek for several weeks to see if Keytruda had finally kicked in, I had a 2.7cm tumor pop up in the brain along with five or six sub-centimeter tumors.  I immediately stopped Keytruda and re-started Taf/Mek.  A series of delays resulted in my having brain surgery April sixteenth.  The preop scan indicated the large tumor was 2.3cm and did not mention any other tumors (it was not comparative and was performed at a different facility than the February 27th scan.)  post op scan mentioned no tumors.  I asked my neurosurgeon if I would be scheduled for gamma knife (standard protocol with him for surgical site "clean up").  He said he wanted to wait for one more set of scans in two months to decide.  I felt I was being turned into a test case but I was not concerned as I was back on my wonder drugs.  Even if my neurosurgeon did not believe Taf/Mek could work in the brain, I did so I wasn't worried about putting off gamma knife.  I was hoping it might even not be necessary.  I had a fresh brain scan at a different facility but one I've used before this past Monday the 18th and gave them a CD copy of my February 27th scan for comparison.  Of course my neurosurgeon was on vacation all week but I had requested a copy be mailed to me.  I received it yesterday and the report noted no evidence of disease.  They listed every tumor from the February report as resolved (except for one resected).  So my brain is NED.  I'll find out about the rest of me in a couple of weeks.  So for those folks that have the BRAF mutation that are responders to Taf/Mek, my experience is that it works in the brain too.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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Julie in SoCal's picture
Replies 6
Last reply 6/24/2018 - 10:21am

Hi there friends!

Just wanted to give you a quick update. I saw the Rock Star again last week and we came to the conclusion that surgery to get rid of the mela met on my arm was the best way forward.  It's too small for a clinical trial (even if I would qualify) and while we could do T-VEC or another injectable, it didn't make sense without a PD1 kicker (and at this point it's not worth doing more PD1 as it nearly crippled me). Of course we could wait for it to grow a bit bigger... but small is good.

So Monday afternoon out it comes! and I'm ok with this.

Knee number 2 comes out the middle of July and I can't wait.  Soon I'll be walking without pain!  Ok I lied, without a lot of pain!  Eventually I hope to be back to my "gosh I enjoyed that walk, let's do it again" self.

So friends, keep up the good fight!

Peace!

Julie

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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Hey all...

Finished my second round of IPI on the 15th. No noticable side effects. In my meeting with my onc prior to treatment, I showed him a new growth on my chest/shoulder region. He said it was a dermal metastasis and was "clinically concerning". Any way, I still have two treatment to go, with a scan scheduled for August 1st.  Stay tuned.


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laurakoco's picture
Replies 1
Last reply 6/23/2018 - 1:39pm
Replies by: iskitwo

Hi there,

It's my first time posting here. I am 28 y/o female living in Boston, MA, and I just got a diagnosis of Melanoma stage 1A from a mole biopsied on my calf. Oddly my dermatologist thought it looked fine, but I pushed for her to biopsy it anyway. I know a lot of people here have have more advanced Melanoma, but nonethelness, I am very scared. I am scheduled for excision in two weeks. From reading here, I know I will have to monitor my body and my lymph nodes for the rest of my life, as the cancer may return at any point. I just wanted to share and say hello and leverage the strength of others here. Luckily I have a great boyfriend but my immediate family with the exception of my brother is just garbage. At times I can feel very alone in this, but I'm trying to stay positive! It feels very weird to say I have cancer.

One day at a time,

-Laura

Laura - Stage 1

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ed williams's picture
Replies 1
Last reply 6/23/2018 - 10:19am
Replies by: Bubbles

Some good results presented by Dr. Weber in a short Video for Adjuvant therapy, new targeted therapy drugs and long term Pembro patients keynote 006 data.  https://www.medscape.com/viewarticle/898327

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/22/2018 - 10:39pm

Had my appointment with my oncologist this afternoon and the results were that the disease is stable with no new growth. Unfortunately what was still there currently remains but its wonderful knowing that it isn't growing.

NED status currently eludes me but I'll take this for now knowing that a year ago I was freaking out over my diagnosis of stage 4 melanoma. Good luck to every single warrior on this board. I had a friend have to transfer to hospice and is fading quick but his body while not on any drugs is continuing to fight back. It's quite remarkable and just wish his family the best in their time of need.

- - - 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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jennunicorn's picture
Replies 22
Last reply 6/24/2018 - 2:22am

Hello friends!

I wanted to update that my CT and brain MRI on Monday were very unremarkable! *NED dance*

Another 6 months of "regular" life ahead... well, sorta... in 3 weeks I will have surgery to repair a torn meniscus and remove a cyst it created in my right knee, so that's not going to be too fun. I'll be stuck at home recovering on disability... it's funny because I never had to go on disability or take much time off during all the melanoma madness. Hopefully after healing and rehab I'll be in a lot less pain!

 

Sending good vibes to you all as always

Happy Friday :)

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Onto's picture
Replies 3
Last reply 6/22/2018 - 11:34am
Replies by: Anonymous, Onto, kcmtnbiker

I've got this mole since I can remember (I'm 22) and I noticed black top layer of mole has flaked off and under is raised very dark brown mole. Is it melanoma? Why the top layer flaked off?

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Nozland's picture
Replies 6
Last reply 6/22/2018 - 6:36pm
Replies by: Nozland, Janner, AMcReader

Hi.  I am new to this board.  I feel a little nervous lately.  I just had two stage II melanomas excised off my right leg.  My poor right leg feels picked on. 

Last year I had a melanoma excised off my lower leg, shortly after I had that cut out, the docs at the Mayo dx myxofibrosaroma (cancer in the soft tissue of my lower right leg).  I went through chemo until Feb of this year, then, finally decided to have my lower leg amputated.  I was just getting ready to be fitted for my prosthetic when the dermatologist founed 2 more moles on that leg.  One located on my inner knee, so, I have to wait a couple more weeks before I can start to learn to walk.  I had a brain scan as a follow up and they found a 5 mm white spot -- undetermined (either a stroke? or brain metatesas).  

So, when I had the surgeries this week, the doctor told me that I have a 98-99% chance to be cured because the melanomas were not to deep.  That great, but, I wonder if my 3 cancers are connected and what about the brain spot?  (My 3rd was an atypical fibrous histiocytoma).  The docs at the Mayo are going to staff my case.

Is having had had 5 melanomas a lot or not?  Should I be worried?

 

I am looking for support...

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/22/2018 - 3:15pm
Replies by: Janner, kcmtnbiker

Hello
I have had a mole on my wrist for years and over the past two months it looks like it's spreading. My GP wasn't too concerned but sent me to the dermatologist just in case. Upon looking at it he says it is most likely to be a dysplastic Nevi. I thought these were moles that appeared aytpically. Can normal moles change into atypical moles without being cancerous. As it is so small less than 1mm and in an easily viewable place not to remove it. However it was still spreading between first appointment and referral and so am worried it could be worse.
So can normal moles develop into atypical moles?

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tedtell1's picture
Replies 9
Last reply 6/21/2018 - 9:58pm

Friends;

As I haven't posted for a while, I thought I would share some great news. After having been diagnosed in February with stage IV, (secondary deep tumor on back spread through the blood) and a WLE repeated scans and treatment with NIVO I continue to show no sign of any further growth or tumors. My body wasn't really crazy about the NIVO and I have developed colitis after 4 months. Treatment with prednisone has spiked my blood sugars and created an insulin necessary diabetes. This condition seems to be very temporary as the blood sugar is fine until I take the prednisone. I believe this will resolve quickly when I taper of prednisone, which should start soon as it does not seem to be doing the trick and the doc is going to change tactics to another med. I still have the white spots on the back of my throat, ENT's don't really know what it is, and it has effected my voice/etc....but again something I will just have to live with. In reading everyone elses's stage IV stories I have to continuosly pause to think about how blessed I am with never having had mets in any other area! So going forward I have discontinued the NIVO as Dr. Dudek feels it has done what it was intended to do and the colitis should clear up eventually going off it. Thanks for all the support and love, this site has been hugely informative in my process of treatment and navigating. I pray for everyone daily and long for the same results for all of you. So for now, the beast has been kicked to the curb! I am planning on that being a permanent thing!

Blessings,

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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happyfeet123's picture
Replies 8
Last reply 6/23/2018 - 11:39am
Replies by: BillB, happyfeet123

Hi Everyone:

i have been reading the posts for awhile but never posted.  The information and responses have been very helpful in navigating and understanding melanoma.  My question is.....My last two pet scans has shown metabolic activiy in the opposite leg (thigh) of my primary leg tumors. The energy it is taking up has doubled.  My oncologist does not think it is melanoma because it usually does not go from leg to leg.  She stated she is going to keep the treatment the same.  I am currently stage 4 and receiving keytruda  for about the last year.  I was ok with this in the beginning because it didn't matter if it was or not the treatment was going to be the same.  But after the second pet scan showed it was gettin bigger I started to change my thought process.  I would think you would want to confirm if it was or wasn't melanoma.  This way you would know you have developed other lesions while on keytruda.  You could wait until the next pet scan to see if keytruda took care of it or decided to cut it out. I would think if it was melanoma the sooner you cut it out the better.  Though have it deep in your intermuscular muscle could be a long recovery. If not melanoma, what could it possibly be?  If anyone has ever experienced this or has input I would greatly appreciate your replies.  

Thanks

Happyfeet

 

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caman's picture
Replies 18
Last reply 6/23/2018 - 1:14am

Hi, Not sure what happened, i will know more Monday with my follow up.  But as of right now i feel someone up above is looking after me.  My melanoma was at least 3.8mm at least stage 2A...T3 to T4.  They canceled my SNLB before they cut me open because the pre screening indicated I didnt need a Sentinal Nobe Biospy.  The surgeon performed the WLE and that was it.  

Mirarcle as far as I know with  the circumstances considering the size alone of the melanoma.

Did someone else here have the same experience??

 

 


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lamurphy1968's picture
Replies 5
Last reply 6/24/2018 - 1:37am

Hey everyone!
I'm having my first ever WLE on my abdomen tomorrow and I really have ever no idea what to expect. The surgeon held his thumb and index finger about 4-5 inches apart and said " your scar will be about this big". He acted like this isn't a big deal. He is doing it in his office. I wasn't nervous until now. Is it more of a thing than the dr acted like?

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rainrrr's picture
Replies 9
Last reply 6/23/2018 - 11:45am

I am 32 years old and live in FL. I was diagnosed with nodular melanoma pt4b. I have no health insurance, is anyone aware of resources? I know I need treatment immediately,  the growth started around 5 months ago. I have an apt on 6/28 for a consultation with a surgeon, I know I need will node lymph node testing and likely imaging. Please any information would be good, I am very scared. 

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