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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Riven's picture
Replies 16
Last reply 7/3/2018 - 4:37pm

Over the past 6 weeks life has felt like a roller coster. My range of emotions has been off the charts, but I have always kept a brave face on for friends and family. (Even after my cat Harry passed away last Friday night) I just feel like if I don't keep a constant smile, that people are going to start to become upset with me. I have always been a very animated person, who does their best to keep the mood light and happy. But when things bother me or freak me out, I usually am very vocal about those things as well, which hs given me the lable of being overly dramatic. This is something that most of my friends and family have said a least a couple of times in my life. "Stop being so dramatic."  "Come on, it's can't be that bad."  "Are you really going to let that bother you?"  "That is what you are worried about? Please..." I could go on for hours...I can't tell you how many people have used the line, "At least it's just skin cancer."

 That being said, I fell like most people don't understand the saviarity of my diagnosis. I have spent countless hours doing research, along with my mother, and have poured over this wonderful forum to help give me better understanding of what to expect. I have given my friends and family facts on how detrimental this disease can actually be. Even after all that, when I gave the announcment that I am currently NED, everyone had a sigh of relif, and a few people said that they knew it wasn't 'that bad'. But when I tell them that the fight isn't yet over, and really never will be over, they brush me off.

At this point it's hard to grapple with the intese feeling of being so alone. I keep questioning myself now, wondering if it really isn't that bad and if I am just being dramatic. I guess I don't really have any questions, I just wanted to get all of that off my chest. If I am posting to often, please let me know, but it just helps to just put it all out there, you know?

Thanks for listening,

Becca

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KellyH's picture
Replies 8
Last reply 6/28/2018 - 10:08am

Hi everyone!!! A little background info...my son is 17 years old diagnosed Stage 3A...he started Opdivo infusions in May. We are 3 treatments in. He is doing great so far...no real side effects. He has complained of a little lightheadedness but he was all congested and Benadryl seemed to help so I’m not attributing that to the Opdivo..he has had a few stomach aches but again he’s 17 and eats like a 17 year old so that’s hard to count as a side effect as well...since he was diagnosed I have become an avid reader about everything and anything melanoma. We have an amazing group of doctors caring for my son here at home and we traveled to Boston for a consult as well. 

As of yesterday we learned that my son is BRAF positive.  That opens up the whole oral meds as targeted therapy instead of the Opdivo...We are looking at college starting in a couple months and biweekly infusions will be difficult as he is dorming about 45 minutes away from home and will be playing baseball for school....obviously we will get him to his treatments no matter what the inconvenience. The doctors said hopefully a few months in he can switch to monthly infusions instead. 

I am just curious how everyone feels about Opdivo vs. the oral meds...the doctors seem to feel they are both equally effective as adjuvant therapy...and my son would prefer the oral meds. I have no idea which one insurance will prefer. 

I am hoping to use other patients personal experience as well as the literature out there to make the best decision for my child. He has his whole life ahead of him...I need to get this right!!!! 

Thanks!!! 

Kelly :) 

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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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Abbygx2589's picture
Replies 7
Last reply 6/28/2018 - 9:38pm

Hello all,

My dad (stage v with brain mets) has met the two year mark of ipi/nivo combo with nivo every 2 weeks. He is now off treatment as his oncologist  feels he no longer will benefit. I hope he is correct! Spots in his brain and lung are still visible but they feel that there may be no more active cancer. I cannot believe how far he has come!! 

Has anyone else discontinued treatment without fully being known as NED (no PET/biopsies)?

 

Thanks!

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Anonymous's picture
Replies 3
Last reply 6/28/2018 - 9:26pm

You will find this very encouraging and it is translated to many languages:

http://melanomainternational.org/events-webinar/patient-experience-video...

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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 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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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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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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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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csongwrtr@aol.com's picture
Replies 1
Last reply 7/5/2018 - 11:23am
Replies by: Jenncat0402

Hi I was just diagnosed with stage 1 melanoma and it is 0.8. Doc is recommending lymph biopsy as a precaution. Any body have 0.8 what is your experience??

 

Thank you and Blessings to All!

 

T

Christina Micula

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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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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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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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