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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Anonymous's picture
Anonymous
Replies 1
Last reply 6/27/2018 - 9:49am
Replies by: cancersnewnormal

I've seen a lot of stories on the internet, as well as some people here, that have had Melanoma stage 1 "cured" only to have it come back as stage 3 or 4 many years later. How does this happen if all the cancerous tissue is excised from the original site? I guess I don't understand. I have stage 1A, yet to be excised, and am wondering what to look for if it comes back down the road. 

Laura - Stage 1A

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caman's picture
Replies 1
Last reply 6/27/2018 - 9:20am
Replies by: cancersnewnormal

Hi everyone,  My WLE pathology reported a MAXIMUM 2.5mm Breslow thickness.  Does anybody know if thats common practice to report the thickness in maximum terms rather than a precise number?

Thank You!!

 


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Riven's picture
Replies 8
Last reply 6/27/2018 - 8:20am

As some of you know, last week I posted about having been diagnosed with Stage III Melanoma and I was going in for my first ever PET and MRI. Interestingly enough the PET went better than expected and the MRI was much worse. (I have a feeling that when I was being told about these tests I got the acronyms backwards. That is very common for me because I am dyslexic.)

Today was the day I was told I’d get the results of both tests. The tech said that if I hadn’t heard anything by lunch to call the office, so I did. An admin answered and took a note for Dr. Hsueh to call me back as soon as he could. Now mind you, I am well aware that his nurse Sandy’s last day of vacation is today, so I didn’t really expect him to call me back at all.

He did end up calling, and he definitely seemed rushed. When I answered he said “Hello Rebecca. I want to tell you that it’s fine. Your tests came back fine. Okay?” I said that I didn’t expect that and he said, “Well, they are fine, okay? Have a good day.” And as soon as I finished my response he hung up.

I’m doing my best to keep calm about this. As an office admin myself, I know how hectic a job can be when someone is missing from the office. Still, I really don’t know what he meant. Everyone has varying degrees of what ‘fine’ means. I don’t even know what sub stage of III I am yet, so I don’t really even know what ‘level of fine’ I can use to compare to my experience.

I’m just so frustrated. I feel like I might just call the office tomorrow afternoon and ask for Sandy; maybe she will be able to help shed some light on the situation. I’ve been trying to do research, but things are very complicated at Stage III and I get lost very easily, hurray for being dyslexic…
If any of y'all have any advice, I welcome it with open arms!

Best Regards,

Becca

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laurakoco's picture
Replies 6
Last reply 6/27/2018 - 3:29am

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 1A

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Riven's picture
Replies 1
Last reply 6/26/2018 - 10:12pm
Replies by: rainrrr

I know that I was extremely frustrated yesterday, and I want to thank y'all for taking the time to walk me through all of those feelings and questions. Thankfully today I got most of my questions answered.

I called Sandy this morning around 10am. I asked her to tell me exactly what the test results meant. She read them to me line by line, explaining that both the PET and the MRI showed I am NED. So by a miracle, the only lymph nodes that had active cancer in them were the two that they took out on June 1st. I also asked about my Staging. I’ve known that I am Stage III, but I have not be notified on whether it is a, b, c, or d. She said that Dr. Hsueh does not letter out the stages, so I guess I will find that out with Dr. Richart on July 11th. As I understand it, I will still be seeing Dr. Richart, my medical oncologist, to figure out which treatment option is right for me.

Over the past week or so one of the things I have learned is that being at Stage III means I still have a fight ahead of me, even though I am NED. I am going to take every opportunity to make sure I stay NED for as long as possible!

Thanks for listening.

Becca

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MelanomaMike's picture
Replies 6
Last reply 6/26/2018 - 7:52pm

Hay family! Hope ya all are feelin good & enjoying what werkend is left! As for me im actually doing great compared to day 6 after my 1st combo (ipi & nivo) as you all know, pure hell for me but, i this round is doing ok this time, im at day 7 and no aches, no flu like symptoms nothing! (Knock on wood) maybe that was Yervoys "initiation" for me cuz between the two meds, its the butt kicker for alotta folks!...
Anyways family, you all take good care...Mike

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Nick C's picture
Replies 6
Last reply 6/26/2018 - 9:14am

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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caman's picture
Replies 19
Last reply 6/26/2018 - 3:04am

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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Anonymous's picture
Anonymous
Replies 2
Last reply 6/26/2018 - 1:17am
Replies by: obtu.bt, Threefitty

Dear all,

I have passed my 10th months after CLND on my right leg and had radiation and 4 doses of Yervoy. Since I am on wait and watch with regular scans. Last scan was clear as well:)

I have still have lymphedema on my right leg (about 3cm bigger on diameter). My doctor suggest me to swim to decrease of level of lymphedema.

On the other hand he suggest me not to swim in the pool that clean up with Chlor and recommend me to look for pool clean up with Ozone.

However in Turkey it is difficult to find the pool clean up with Ozone.

Do you have any suggestion or impact to use about the swimming pool clean up with Chlor? is it risky? what do you think.

thanks.

 

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Julie in SoCal's picture
Replies 10
Last reply 6/25/2018 - 9:04pm

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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Bubbles's picture
Replies 4
Last reply 6/25/2018 - 2:35pm

I figure we can all use an extra dose of beauty and a story of hope!!!  Eleanor Segal, melanoma superhero extrodinaire, has dealt with so much...with a skin lesion in 1989 to abdominal mets in 2013 to ALL the treatments (surgery, IL-2, Yevoy, Opdivo, BRAF/MEK) to...NED!!!!!!!!!!!!! ~ has written/painted a beautiful book:  Sketching my way through Metastatic Melanoma.

Here's my take:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/art-information-and-hope-sketching-my.html  

It is so lovely in every way, that I thought it deserved a "share"!!!  Happy summer, guys!  Celeste

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ed williams's picture
Replies 2
Last reply 6/25/2018 - 10:04am
Replies by: VinceMart, 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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VinceMart's picture
Replies 6
Last reply 6/25/2018 - 9:59am

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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Nozland's picture
Replies 7
Last reply 6/24/2018 - 9:37pm
Replies by: Janner, Nozland, 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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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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