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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tedtell1's picture
Replies 1
Last reply 6/27/2018 - 10:24pm
Replies by: kst

Hey everybody;

Happy be NED but dealing with the nasty side effects .....so it looks like this week I will be going back in to infusion for a dose of Infliximab to work on the colitis I have developed. I have also developed Type II insulin required diabetes from the high dose steroids.....ugh....but hey, not tumors, right! Question is, has anyone had experience with the Infliximab infusions for colitis? How did it go, any side effects. I am expected first one on Weds., then hopping on a plane to go out East on Thursday, so it would be nice to have the antenna up for any potential side effect issues. 

Thanks for any info folks!

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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Bobman's picture
Replies 2
Last reply 6/27/2018 - 10:03pm
Replies by: Bubbles, Janner

Greetings to everyone in the fight!

I just got home from four biopsies.  One a dead ringer as a previous Insitu, two from new pigment in previous WLE's,and one on my neck. I'm starting with the left side of my body first,then we're going to do more around the entire body about four biopsies at a time, give or take, according to outcomes of the previous results.  I'm having a bit of hard time determining changes at the rate of new lesions. My current oncologist won't play with me until  he sees  signs of mets....at least to the level he's looking at. No one has attempted to rule out mets to the epidermis, and when we get to the right side of my body, I've  got lesions that are actually leaving scar lines as they move through my skin.  One has moved more than one inch. I've never seen anything like it, nor had my surgeon.  He's going to play. It's going to be a summer of cutting, thank goodness. 

I've got genetic testing coming up, and consult with new oncologist within a couple months.  I should have plenty more ammo by then. It takes some doing working this thing.

Thanks as always to everyone here.  Every story is important.  To be continued....

 

Aloha, 

Bob

 

We are one.

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DZnDef's picture
Replies 9
Last reply 6/27/2018 - 9:44pm

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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BethPendley's picture
Replies 8
Last reply 6/27/2018 - 8:31pm

Hi everyone- My dad was diagnosed advanced Stage 3 in April when he had a shave biopsy on scalp concurrent with neck lymph node biopsy (he went for what was expected to be sebaceous cyst removal that turned out much more serious. Due to some cardio issues, WLE and modified radical lymph dissection delayed couple of months and he started Opdivo May 30. Between original biopsy April 2 and start of Opdivo, another visible pretty large melanoma tumor appeared in same spot as original biopsy (became noticeable early May and continued to grow). Oncologist at Moffitt did needle biopsy May 25 to confirm it was melanoma and not unrelated infection- positive.

After 2 Opdivo treatments (third will be Wednesday), the visible tumor is gone. The medical and surgical onc told us if it continued to grow we would need to accelerate surgery despite cardio risks. My question is- is this a really positive sign that the tumor has shrunk so significantly or am I being overly optimistic?

thanks and God bless!

beth 

Beth

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/27/2018 - 8:00pm
Replies by: Linda5, mmmm, Threefitty

Hi everyone!

I am recently diagnosed with stage IIIb melanoma and I am wondering if those with a little more experience can give me some advice. The posts here have given me a lot of hope in the last couple weeks.
After an excision and SNLB, they have found two small melanoma deposits (0.5mm) in the one lymph node they took out. I just recently saw a surgical oncologist and am seeing the medical oncologist and dermatologist in a little over a month.

She said that from here, its likely that there will be no further treatment aside from ct scans every six months.I guess this is also dependent on whether i have the BRAF mutation or not, which I'll find out in a months time. I'm wondering, after doing some googling why its a ct scan and not a pet scan. I'm in Canada by the way, not sure if this makes a difference. She also said none of this is extremely time sensitive, and that everything is so tiny that I shouldnt really worry. I guess I'm mostly having a hard time figuring out how serious/ bad this is. Every step of the way, they've told me that based on the biopsy/thickness/mitotic rate that it was unlikely to go further, but I just keep getting more and more bad news.

Any advice is greatly appreciated, I'm feeling very lost and helpless right now. It seems crazy that all i can do is essentially wait to see if it gets any worse. 

thanks in advance 

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Anonymous's picture
Replies 4
Last reply 6/27/2018 - 5:16pm
Replies by: Dream123, Anonymous

Here is the series of events....

-Biopsy  early April

-Full excision end of April (diagnosed stage 1A)

-Progressively, in this last week, brown pigmentation is showing up right through the excision scar....it is not normal scar tissue, it's the same shade as the brown color their originally removed, and its exactly where it was before ........... The

-WLE scheduled for the end of this month

 

 

Is it possible that in the last month, (and since the margins from the last excision were NOT clean) that it is still growing, maybe even at a faster rate now that they've messed with it so much? Im wondering why they didnt go right from the biopsy to the WLE, but they DID remove ALL the visible pigmentation will the full excision, and now I can see it again....

 

Thoughts?

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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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