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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Nozland's picture
Replies 1
Last reply 6/21/2018 - 5:26pm
Replies by: Janner

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 0

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 6
Last reply 6/21/2018 - 5:03pm

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 0

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 8
Last reply 6/21/2018 - 5:13pm
Replies by: Janner, caman, ed williams

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 4
Last reply 6/21/2018 - 3:54pm

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 4
Last reply 6/21/2018 - 7:13pm
Replies by: rainrrr, caman, happyfeet123

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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MelanomaMike's picture
Replies 4
Last reply 6/21/2018 - 3:52pm

Hello MRF Family! I hope everyones doing ok & maintaining a positive attitude towards our mutual battle with this damn crap!
So, update, combo#2 finally is flowing through these veins of mine (June 18th) , a few weeks there it was postponed, 1st one due to irregular bowel movements (saftey precaution) 2nd time was due to my ACTH level being at 1.0.
So ya, finally back in the fight, im rearmed with weaponry (ipi & nivo) now im anxious to see what day 6 brings, as you remember, after my 1st bag of goodness i began the week & a half of pure hell starting at day 6 with the flu like feeling, and by day 8 or 9 my appetite was nowhere to be found (looked everywhere, even under the couch) pounding headaches (when i stooped down), nausea, dry heaves/vomiting, i couldnt eat for close to 7, 9 days! Then, as iv told you, Megace came into my life and after 2 or 3 teaspoon fulls i was instantly back on track! MEGACE IS GOD!
You guys, that was the worst experience so far in my life physicaly, & i just hope it doesnt happen again, im suspecting the corporate is Yervoy, hes the BUTT KICKER! Lol....
But anyhow, day 3 i feel just fine.Doing my wood working & keeping busy...
Ok guys, just checkin with ya's and ill write soon (hopefully NOT complaining) haha...
Love ya, Mike...

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cancersnewnormal's picture
Replies 6
Last reply 6/21/2018 - 9:34am

Yesterday, I replied to this topic on its original posted question from Sam. I'm not NRAS nor BRAF, but did take MEK successfully for a few months as part of a study. The link to that study is on the original post. Buuuuuut that post is a few pages deep now, so I wanted to leave y'all an article link which just dropped into my email this morning from the European Journal of Cancer. It is an abstract specific to MEK use in NRAS patients....... although you may also wish to go back to the other post for the additional article, for a more informed explanation on how some of these mutations behave, and why MEK may work for them, even though they are not BRAF V600E or K.

 

MEK inhibition may increase survival of NRAS-mutated melanoma patients treated with checkpoint blockade: Results of a retrospective multicentre analysis of 364 patients --- https://www.ejcancer.com/article/S0959-8049(18)30811-6/fulltext?dgcid=raven_jbs_etoc_email

 

http://cancersnewnormal.com

-- Niki

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Anonymous's picture
Anonymous
Replies 15
Last reply 6/20/2018 - 6:23pm

Hello, Im new here and I was wondering if anyone has worked while going through opdivo treatment, because I will be starting soon and would love to get back to work. I just finished 33 treatments of radiation so Im home at the moment. I will be doing every two weeks for a year.  The Dr told me to wait atleast a month to see how I feel and Im praying I can go back after that 1 month. 

Thank you 

Amanda

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Riven's picture
Replies 12
Last reply 6/21/2018 - 11:52am

This whole journey has been happeneing rather quickly. My first appointment with my dermotoligst was May 14th, the removal of the primary was June 1st, and still with stitches in my back, I will be going to my first MRI and PET scans on Wednesday June 20th.

Im pretty nervous. I'm nervous that I might mess up the diet, and they wont beable to do the scan. I'm nervous that sitting in that room for 2+ hours will get to me. I don't know what to expect.

So I guess I'm just asking for any advice from the community for this newbie.

Thanks for any help in advance.

-Riven

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ksbadger13's picture
Replies 1
Last reply 6/19/2018 - 12:38am
Replies by: Janner

Hi all - 

I went through genetic testing last year and am positive for the mutation in the CDKN2A gene which significantly increases risk for both melanoma and pancreatic cancer. My genetics counselor suggested my husband and I look into IVF with PGD (preimplantation genetic diagnosis) if we decide to have our own kids down the line, to avoid passing my gene on to them. Since there's a 50/50 chance that I would, and having lived through and with the turmoil that is melanoma, now coupled with the nagging concern about pancreatic cancer, this method does sound appealing, though scary and expensive. I'm wondering if anyone on here has tested positive for the gene, and if you've had your own kids, considered IVF, or decided not to have kids. This is such a rare mutation, with not a lot of searchable information or support, so any input would be appreciated! 

Thank you for your time!
Kellie 

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VinceMart's picture
Replies 5
Last reply 6/19/2018 - 12:13pm

Hi all,

I have a MRI tomorrow, last one was 8/2017 and clear.  I am a little nervous since this past year I have had 2 in transits and lung and liver mets.  I am currently on Keytruda and Mek.  I will keep updating in case anyone else is on this combo and please reply if you have any experience with this combo. Hopefully I will have good news!  Best wishes for continued good health to all!

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Anonymous's picture
Replies 5
Last reply 6/21/2018 - 2:18pm

I have a question would it be better to have my surgeon from ENT surgeon or a melanoma surgeon?? I am getting shuffled from 1 surgeon to next. We waiting time I want this out of me so I can start fighting!! Thanks

Susan Bette Hall

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