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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aziza's picture
Replies 2
Last reply 3/15/2017 - 12:48pm
Replies by: CindyCo, Anonymous

I am still new to melanoma, as it is a rare case in Thailand.

My mom, aged 77, has mucosal melanoma at her upper vagina, which could not be removed by a surgery. Now she is having a radiotherapy, external beam .

- Any ideas on how we monitor whether it is not spreading?

- How often do we need a PET-CT?

It is hard to make her not to worry about a radiation. 

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MichelleRHG's picture
Replies 6
Last reply 3/14/2017 - 10:18pm

My hubby may lose his job. We have had excellent insurance that allowed me to go to MD Anderson as "in network", covers my ipi and testing here at home,etc. HAS ANYONE HERE RECEIEVED TX FROM ACA? HOW HAS IT BEEN?

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/16/2017 - 7:28am
Replies by: Anonymous

I had two initial biopsies that were in situ last month, they were punch biopsies and followed by WLE.

Now they want to biopsy 3 additioanl sites, but they won't be punch biopsies, they will go straigh to WLE. I was surprised to learn of this from my doctor today, I can see doing additional biopies but to go straight to WLE was surprising to me.

Has anyone else been given treatment like that for suspicious sites? I haven't heard that this is typcial.   Do you just continue to have only WLE for every suspected site once you have an insitu?  

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newmanmark's picture
Replies 4
Last reply 3/15/2017 - 9:11pm
Replies by: Kim K, jennunicorn, Nemesis

Hello.  Has anyone had the conversation with their Oncogist about the risks of getting pregnant after immunotherapy?  I think the literature says to wait 6 months but I'm wondering if there is any research or opinions from Immunotherapy thought leaders on this?

My wife and I are praying that I get a NED status in the next 6 months and if so we were hoping to try for another child.

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Carybaum's picture
Replies 15
Last reply 3/17/2017 - 3:24am

Hi, all. 

i was diagnosed Stage IV Metastatic Melanoma with several mets in both lungs and liver in June, 2016. I am BRAF negative. Primary was on my right upper arm. The primary was fully excised in Aug, 2014. Started Opdivo in July, 2016. After 18 infusions, my latest PET/CT scan on March 10'th shows that I am NED. Our oncologist has, frankly, no idea on where to go from here. Has anybody out there become NED and continued the immunotherapy? If so, how long were you receiving infusions post-NED? Thank you and all the best in the fight. 

 

Regards,

 

Carybaum


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RitysMom's picture
Replies 1
Last reply 3/16/2017 - 7:11pm
Replies by: MaPerny

My sweet Kristine called me today and said she can now feel two of the tumors. So it's looking like she has stopped responding to Taf/Mek. She has an appt to see a melanoma specialist at MD Anderson on 3/27, but plans to call her local oncologist tomorrow and try to be seen this week. I'm assuming he will start her on immunotherapy...would her starting a new treatment affect her consultation at MDA? Or should she wait two weeks til she's seen by the specialist? Obviously I want her to do whatever it takes to destroy the cancer...I would be thrilled if they surgically removed the remaining tumors tomorrow!

Cindy 

Mom of the beautiful Kristine

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nicolepfeil's picture
Replies 7
Last reply 3/14/2017 - 8:49am

My husband was diagnosed with Stage 3 Melanoma that was located on his arm and in Lympnodes under his arm pit, His option at this point was to start Interferon 5 days a week for 4 weeks, then radiation, then an additional 11 months of Interferon 3 days a week.

We were told how horrible this treatment would be but decided to try.  

After one week he was pulled off of the treatment because it was affecting his liver,  He will be starting again in 2 days and at this point we are wondering if it is worth it.  He is so sick, he cannot leave bed  and is wondering if the 5% chance is worth losing a year lying in bed,

I am wondering if there is anyone on here that has completed the year long treatment, or any opinions on this treatment in general?

I realize everyone is different but as newbies to this diagnosis I am hoping to get any advice that is out there, 

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CindyCo's picture
Replies 4
Last reply 3/16/2017 - 3:26pm
Replies by: Anonymous, snow white, Bubbles, MaPerny

We got a second opinion with Dr. Hamid on Friday and he encouraged us to also get the Abraxane as planned because of the aggressive lung nodules.  He said that he couldn’t offer us any trials right now because of her liver issues, but that there is a trial being amended at UCLA in the future that will allow for Grade 3-4 toxicities (not sure which trial this is yet).  He is planning to contact Dr. Ribas and we will go from there. Dr. Hamid also hasn’t ruled out immunotherapy in the future.  He is taking another look at my mom’s liver numbers and wants to figure out what caused it—if he can figure that out, then the immunotherapy doors will open again.  So things are in the works, but we are more scared than hopeful right now.

So my mom started Abraxane today.  We pray that she will tolerate it well and that we will have a good response.

In the meantime, we are getting her tumor tested and are praying that there is an actionable mutation.  It looks like she is BRAF and KIT negative, so hoping for an NRAS mutation or a mutation that shows up and can be treated by other cancers.  We also have an appointment scheduled with UCSD which has both the I-Predict program and NCI-MATCH.  According to UCSD, I-Predict has more flexible criteria, but they offer both.

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keepthefaith11's picture
Replies 17
Last reply 3/19/2017 - 6:33pm

Hi everyone,

My dad passed away peacefully this morning. My mom was right there with him. Even though his brain tumors had gotten better from treatment his brain was clearly damaged.

Yesterday morning he ended up with pneumonia and sepsis. His oxygen level was only at 65% even with oxygen support.

The doctors are saying that the damage done to the brain was a combination between treatments and the numerous seizures he suffered. They had never seen a case like his and can't really understand what exactly happened.

At the end he was barely responsive and was getting gradually worse with each passing day.

I want to thank you for all your support in the past nine months. Much love to everyone and I will keep you all in my thoughts and prayers.

Annie

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Momofjake's picture
Replies 16
Last reply 3/16/2017 - 4:45pm

Hi friends,

I have been trying to post. It keeps saying error. 

Jakes body is nearly clean, but now he has brain Mets. He is doing SRS next week. He is alive, gaining weight, looks so good and happy. He says he is going to live. He just finished ipi. You gotta love this stubborn, no drama kid. 

Rita's loss broke my heart. And Paul. It's just so hard. I hope our good days shared are okay. 

Love to you my friends,

Kerri--momofjake

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Michelle820's picture
Replies 7
Last reply 3/14/2017 - 9:20am
Replies by: Michelle820, jennunicorn, Anonymous

Hello, was wondering if someone could help me. I had a WLE in late December for a melanoma in situ on my chest area. Margins were clean, etc. While doing my skin check today, I noticed a few pigmented areas at the end of the scar. It's hard to know if there were there initially? Because of how the skin goes through so many color variations during the healing process. Plus, I used a new "MoleScope" device to take pictures of my moles, so of course it magnified the area. Now I am uncertain if this "normal" or not. I only had an insitu, so I wouldnt think anything could recur or spread? But don't also want to blow it off either:/

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Lddaughter's picture
Replies 17
Last reply 3/15/2017 - 12:41pm

I apologize, I feel like I have been using this board/forum as support, hope, guidance and a way to help us get through this really tough beginning. High overview, the last 2 months have been crazy. My moms masses are primarily in her liver where she is feeling most of her pain and the adrenal gland (hormones are being thrown off I am sure). They explained that the masses lay on many nerves that spread throughout your abdomen and back so they gave her high does of oxycodone to try and help alleviate the pain. That was this past Tuesday. We won't start treatment until next Thursday so until then it is just pain management.

Well, she has been having a rough few days. Extreme fatigue (can't stay awake at all), she feels ok until they wear off and then it is back to extreme pain. She is also experiencing nausea and headaches. We are trying to time it and get the pain under control but she hates the feeling of them and the fatigue that comes with it. We are hoping that once her body gets used to them and it is working together to control the pain she will perk up. I just hate seeing her like this and I know she is having a hard time. Any tips on getting these bad days over? I hate to say it scares me but seeing her so lethargic and in pain makes me concerned. Is it smart to keep pushing food and water or should I just let her sleep? 

Thank you for all your information, I truly appreciate it.

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stephanierm's picture
Replies 14
Last reply 3/16/2017 - 12:51am

I will try to make this a short version. I was diagnosed with a congenital atypical spitz nevi that turned into melanoma in situ stage 0 in August 2013,age 24 while pregnant with my first daughter, it was removed with clear margins. My brother, age 33, was diagnosed with stage 3a melanoma in December 2016, my father was diagnosed with melanoma in February 2017 (still awaiting staging results), my grandfather had multiple melanomas and has since passed and also my husband was diagnosed with stage 1a melanoma at age 15. 

 

I have 2 daughters, age 3 and age 7 mo. Their pediatrician referred them to a Preds dermatologist because of our family history. My question is, should I have their peds dermatologist remove ALL moles they develop throughout their lives, and I believe my 3 year old has congenital spitz nevi but the derm said we can watch and wait to remove. 

 

There is just so much family history of melanoma in our family, I feel like my children will 100% get melanoma in their life and I want to do everything in my power for that not to happen. What should I do? 

 

Thank you 

Stephanie M.

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MovingOn's picture
Replies 5
Last reply 3/16/2017 - 9:54am

I started Ipi (10mg/kg) recently. My Oncologist said that my taking of Ibuprofen was fine (taking Ibuprofen to reduce swelling from surgery). However, when I was getting the Ipi infusion the Nurse in the oncology/chemo area said I should not take Ibuprofen while on Ipi.

i trust my oncologist and think the nurse was more referring to her primary job in chemo infusions rather than immunotherapy. But in either case I've stopped taking ibuprofen.

Do any of you take Ibuprofen while on Ipi?

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Hi all, I'm a bit hopeless at the moment. Steven is in hospital again. Short history since diagnosis early January: mets in brain (some big 3-5 cm), one big met on adrenal and others on spleen, thyroid and lungs. GammaKnife denied by insurance because of bigger tumors in head, so he had 10 times WBRT in January, tapered off decadron and got nivo/ipi on Feb 8. Back on steroids after few days because of brain edema. A CT scan mid Feb seemed to show that tumors are shrinking.... During the tapering off the last month he got weaker and especially the last week weaker again and less responsive, bladder issues, not able to walk by himself,  this all happened last few days (still on 12 mg decadron)... Yesterday to ER, and MRI shows that the three bigger tumors in the head have been growing again, some even from 3 to 5 cm! And more edema around them, causing the symptoms (while still on 12 mg decadron, that surprises me).  The other tumors seem calm. Now back on 16 mg decadron. Tomorrow talk with oncologist, but I think the talk will be about hospice... My questions: do you think pseudo-progression can look like this? Do you think he is a non-responder to nivo/ipi?  Steven cannot travel really, he is so weak. What would be other options? And if you think we are out of options that is okay too, because that is what I feel right now.

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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