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.

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Had my first infustion on Weds afternoon/evening. Was asked at least 5 times if I had immodium/nausea meds at home. Had no side effects yesterday, and nothing today. Still waiting for the shoe to drop.

Wondering if the treatments work if there are no side effects? Can I read anything into that about effectiveness?

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Ellie_82's picture
Replies 2
Last reply 7/12/2019 - 9:35pm
Replies by: Ellie_82, Bubbles

3 years ago I had several moles biopsied, 2 of which came back "moderate atypia". Since the pathology report stated that the margins were clear for both, my dermatologist said that no further treatment was necessary. However, after a few weeks one of the atypical moles was coming back at the biopsy site. Can someone please explain to me, how is that possible with the clear margins? Doesn't "clear margins" mean that all mole cells were removed?

Follow up story. I went back to the dermatologist who did a WLE with 5mm margins. I wanted a WLE on the other atypical mole too but the dermatologist said "there is nothing to excise, if it starts coming back, come see us and we will take care of it". To date, none of these 2 moles came back, thankfully. But I am still baffled by how can the mole come back if the path report stated "clear margins". Also was it the right decision to leave the other atypical mole biopsy site alone, or maybe I should have pressed harder to have it WLE'd as well?

Thanks so much for your responses!

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obtu.bt's picture
Replies 3
Last reply 7/13/2019 - 7:00pm
Replies by: Edwin, Summer S., AMcReader

Hi folks,

after my pet result with tumors in lungs and some bones I have started ipi/nivo combo.
I have taken 2 round of combo however after my lost combo my LDH level increased from 200 to 400.
My CT TORAX show many new activity on boths lung + liver + some other places....
My onco decide to stop ipi/nivo combo and switch to taf/mek immediately.
do you ever faced similar situation?
Please share your experiences and ideas.

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bethy62's picture
Replies 2
Last reply 7/18/2019 - 9:46am
Replies by: bethy62, MC1R

Has anybody compketed the one year protocol of Dabrafenib-trametinib combo as adjuvant therapy? Though I am currently on Opdivo and completed Interferon in 2011 I have a peer support friend who recently completed the Dabrafenib-trametinib as adjuvant therapy and is wondering when her energy level will climb
Anybody who has gone through this, if you could let me know your experience it would be a great help.

A positive but practical outlook will carry you through whatever you have to do.

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Teamlex's picture
Replies 3
Last reply 7/12/2019 - 2:02pm

Does medical marijuana interfere with immunotherapy?

Darla hauck

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MelanomaMike's picture
Replies 15
Last reply 7/14/2019 - 12:40pm

Well, my surgery is Canceled, instead of the ol' call from my Surgeons nurse to tell me a time blah blah blah, i get a call instead from my Oncologist leting me know because of all my biopsies coming back Melanoma, and that my latest treatment Opdivo is not working for me. I can handle the Opdivo being stopped, i saw this coming anyway, tumors arnt sappose to pop up eveywhere when yer on it, i get it, but stop a much needed surgery? An easy breezy one to? Ah man, so, her final words where, theres not much i can do, surgerys arnt working, Topline immunal meds arnt working (Pembro, Ipi & Nivo) she said chemo is my ONLY option and of course Trials..apparently the IL2 Proleukin might be to late to do but shes not totaly sure and another referal back to Kaiser Riverside i go, Dr Jang ill see once again. Im thinking if i do anything, ill go back to Kaiser Sunset and see Dr Rodriguez, he was cool as hell And the drive is like 20 minutes compared to over an hour drive at Riverside for basicly the same expertise...im so upset...heres a copy of my email ftom my surgeon......
"""" I had discussion with Dr. Pakanati, you are not candidate for surgery tomorrow
You have the colon melanoma probable small intestine lesion, the anterior abdominal wall mass and the mass you just had biopsied
She will see what other treatment would be available
Your surgery is cancelled for tomorrow"""""""(end)
Cut and dry huh? Pray for me as i do you all....

Im Melanoma and my host is Mike..

www.covvha.net

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NewEra's picture
Replies 7
Last reply 7/12/2019 - 2:09pm

My first immuno treatment today. I got Nivo (Opdivo/Nivolumab) ( first (30 mins) then Ipi (Yervoy/Ipilimumab)). I recall seeing a study on the efficacy of the sequence of these drugs, with one sequence having better results, but of course it's now lost in the ether and, despite 30 minutes of searching, I can't find it again!

Any thoughts/input?

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Bubbles's picture
Replies 4
Last reply 7/12/2019 - 9:42pm

I've been holding you in my heart, Julie. Hope all the melanoma crapola has been removed from your arm without too much horror and you are kicking some TKI bootie!!! Sometimes things suck soooooooo much. But, I know your bright light, beautiful spirit, and incredible sense of humor are hanging in there!!!

And....because we are who we are - there is this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/melano...

Seriously, why couldn't we just have been part of Bernie's top 5%? WHY????????? Big hugs! Celeste

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Lucygoose's picture
Replies 6
Last reply 7/11/2019 - 11:22pm

I have a question. Is combo immunotherapy the gift that keeps on giving? I had 2 rounds of ipi and an investigational checkpoint inhibitor in March and April of this year and surgery in May. The results were fantastic. I am NED. I will start Nivo only in a few weeks.

In June, nearly 2 months after my last combo treatment I developed adrenal insufficiency and hypothyroidism both secondary to pituitary damage caused by immunotherapy.

This week, nearly 3 months post treatment, I am having joint pain in my fingers, toes and knees. I am wondering if it’s related. Has anyone else on combo therapy experienced side effects this far out?

Thank you for your assistance.

Lucy

Lucy

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Replies by: Edwin

Hey All,
While at an appointment today the doctor mentioned a conversation he had with another doctor while at ASCO.
My partner is someone who responded well to immunotherapy everywhere in his body except his bones. Brain, liver, spleen, kidney, lungs all responded. It was everything we had been hoping for. Then the pain started. Then blood work showed an increase in his ALT levels, and a later bone scan revealed there has been serious progression throughout. But not the organs. He has since switched to the old braf/mek combo, and is responding great.

But my partner was the not this first Patient of his who had this same thing happen.
He mentioned this to another doctor at ASCO, and they had also had some similar cases. It sounds like it peaked his interest, and now he’s doing some digging of his own. This is nothing solid, and by no means am I saying that our doctor is starting a new study or anything. I’m really just curious if anyone else has seen this?

Oh, and does anyone happen to have a magic cure they wish to share? :)

Thanks!

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slholmdahl's picture
Replies 8
Last reply 7/14/2019 - 9:18pm

I realize my problem is small in comparison to most of you, but I would appreciate some thoughts from anyone who wishes to comment.

Three years ago, I was diagnosed with a thin melanoma on my right anterior shoulder.  I was told by the doctor who did the biopsy that it was 0.20 mm deep, with a zero rate.  I was never given a copy of the  pathology report,.

After the WLE I was told the margins were clear, again never given a copy of the pathology.

I finally demanded that they give me copies of all pathology reports.  I am an attorney and it took lots of pushing to get them to respond and give me the pathology reports.

Diagnosis was  noted as thin melanoma 0.22 AT LEAST,  on the original pathology report.  The doctor did a shave biopsy and pathology noted it was transected at the base and peripherally.  Obviously the doctor made a big mistake!

The pathology after the Wide level excision, gave the diagnosis as Melanoma in Situ, I assuming the transected peripheral margin?  It does not clearly state that, a special note by the pathologist said no invasive melanoma was found.  Only atypical cells in the epidermis.
Also stated clear margins, and no melanoma found in deeper layers.

Would you get a second opinion?  I realize I'll never know the actual depth, but the WLE pathology said no invasive melanoma found, so it implies the base was transected probably at the margin of the original melanoma.

I'm angry, but I also want to be proactive. if there may be useful information gained.   SECOND OPINION?

The lawyer in me wants to go after this doctor, so she does not do anything like this to some one else.

I never went back to her and have a new dermatologist.  All has been fine the last three years.

I don't think about this much and I have continued living my life to the fullest.

Any thoughts you have are appreciated!

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201Don's picture
Replies 10
Last reply 7/13/2019 - 5:43pm

I am wondering if anyone has experienced shortness of breath with Opdivo.
I had it briefly after the 3rd infusion for about a week then it disappeared. On a scale of
0 - 10 with 0 being normal and 10 being you can't breathe it was about a 4, so low grade.
Since the 4th infusion it has been about a 5 -6 and has not gone away. Fatigue and nausea
have gotten a little better but breathing has gotten worse.
I am wondering if anyone else has experienced anything like this?
Don

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MelanomaMike's picture
Replies 8
Last reply 7/10/2019 - 2:16pm

Well, its nothing new for me having a biopsy coming back Melanoma, i dont even get mad at it anymore, its doing what it knows to do, infiltrate, grow and with a little Medical science & luck, die by my Surgeons trained hands! Immunal therapy isnt working so, i know it doesnt fear that anylonger, Dr Rupp on the other hand, well, they run...
Shes gettin to be my only hope these days..
So ya, Dr Yen my Colonoscopist (is that his title? Haha?) Said positive for Mel in the Sigmoid, roughly a couple inches, and maybe, just maybe, what was seen in my last PET & CT scan in my Jejunum was ACTUALLY the Sigmoid tumor since Yen said our intestines wind and curve so tightly it may be just an oversight, undersight to say it was the jejunum, cuz both scans didnt show Sigmoid especially 18cm "in" from the ol' rectum...
Anyways, if anyone has had simular situations like mine give me a reply, God only knows im not alone, or am i?

Im Melanoma and my host is Mike..

www.covvha.net

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Hello Everybody,

I just had new PET/CT results showing hyper-increase in FDG but zero change in tumor sizes . I am on Zelboraf and we are not sure if we should still go forward with it or switch to Taf+Mek before it is too late. Does anyone has a similar experience with such results? And how did it go?

P.S. we already tried opdivo and it did not work, and excluded up I for severe side effects. So we are only left wit Her keytruda, but we want to keep it as a very last resort.

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Hello! I come here often and read all of your posts, it really helps to ease some anxiety . Your strength is amazing! I had a CLND in my groin as well as pelvic nodes on 6/21 and went in today for post-op and results. My oncologist was very encouraging and said that only a microscopic amount (6mm) of melanoma was found in one groin node. He stated that in simplest terms that some of the cells were attempting to escape the node so is recommending some radiation therapy to the area. Anyone have any experience with this? How was it? Recurrence? I was very successful on BRAF/MEK as I had 2 previous nodes come back positive for Mel & the BRAF/MEK killed the cancer in those nodes. Any advice is welcome and appreciated . Prayers always

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