MPIP: Melanoma Patients Information Page

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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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DT1985's picture
Replies 21
Last reply 2/10/2020 - 7:14pm

Just yesterday, (2/7/20) I received a call from the VA that my biopsy came back positive for melanoma. Mind you this is a mole that was deemed “normal” by two different dermatologists at the VA. Yes I know what you’re all thinking as am I, the VA has a long history of letting vets down.

About me. 34yr old white male, 6’2, 210lbs, fair skin, pinnacle of health. 120/65 BP all of the time, good cholesterol, always great blood results, not exactly the poster child for cancer. But as I am learning, this cancer can affect anyone.

I first noticed this new mole in mid 2018 on the back of my right calf. Started out as a typical round mole, nothing out of the ordinary. Honestly wasn’t even sure (until I’ve recently checked yearly beach pictures) if it was a mole I’ve always had or something new. Until recently last year I started to realize it was growing (not exponentially) and raising. I decided to have it checked by the dermatologist. The doc said it looked fine after using the magnifying eye piece they use. Then after a year of having it I decided to go back and have it checked again and ask for them to remove it since it was still growing. It grew to the width of a tiny bit smaller than a pencil eraser head and maybe way raised 1/3 of the height of an eraser head. The next dermatologist (seemingly good doctor, not lazy, smart, young) said the same thing. “Looks normal”. But I requested it be removed anyways because it was annoying to know it’ was there. Now fast forward to yesterday and I am completely lost in a world of “what if” & “what’s next”. I of course have done the googling and it looks exactly like a Nodular Melanoma. So that’s not exactly helping my anxiety of this. (Mind you I’m a former Marine, current Law Enforcement, and this the most scared I’ve ever been.

I have a follow up with the surgeon on Monday probably about cutting out the margins around it. I have so many questions, so many worries, and I can’t stop thinking about how life is gonna be if the news is worse than expected...

So I am reaching out....In the only way I know how to because I’m generally the man who doesn’t ask for directions or call for a professional. Stubborn and resilient, but right now scared to death.

What should I ask on Monday?
What should I demand?
Should I bring my pathology reports to someone else regardless of this doctors opinion?
Anything else I should be doing?

Thank you all for your consideration into lending some advice.

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tkoss's picture
Replies 6
Last reply 2/11/2020 - 6:45am
Replies by: tkoss, Edwin, Anonymous

most of you know the procedure. infusion and blood draws. some have mentioned thryroid problems. I get to see the Onc less often than infusion, but I do get to look at test results thru my Oncologist patient portal.

what levels of what hormone or other indicator should I look for?

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DT1985's picture
Replies 7
Last reply 2/11/2020 - 11:54am

Went to the VA today. Unfortunately, not in situ...

Pathology says it is 1.5mm deep and the doctor doesn’t think it is ulcerative (he is just a general surgeon). They want to do mohs next week as well as STNB. Doc doesn’t think it has spread to nodes yet but wants to be sure. However due to my job, having any type of surgery has major implications/consequences from performing my duties. I have brought all of my pathology reports to an actual Melanoma Specialist. Hopefully they get back to me soon.

So I ask you guys for the time being....At 1.5mm do you think it’s necessary? The mohs I know is needed anyways but is the STNB?

Guess this puts me at a stage 1 or 2. But can that even be determined before the mohs?

As always, thank you everyone for your help.

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Hello MPIP group,

Since I know many of you use this information source regularly and it is the key source for all of us for clinical trials, both nationally and internationally, I wanted to share that the National Library of Medicine has put out a public request for feedback on the ClinicalTrials.gov site:

https://nlmenterprise.co1.qualtrics.com/jfe/form/SV_e2rLEUAx99myump

The first part of the survey is geared to end-user feedback and the second part is geared to those (like sponsors/investigators/organiazations) who have to submit study information and subsequent updates and datasets, etc.

I know Celeste pointed out some good facts about some of the current challenges of clinicaltrials.gov and lack of consistent data reporting, etc. Here's a chance to provide some feedback on the interface/system. I know I'll be supplying some of my current issues with the site.

Hugs to all,
Jackie

Jackie <3

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/11/2020 - 9:33pm

Hi all!
This is Marta from Spain. Ihave been diagnosed in October 2019 with a primary dermal melanoma of 1.7cm. no union with the epidermis on the scalp.
I have had 5.5cm of skin removed and also biopsied the sentinel nodes without any sign of malignancy as well as PET scan.
My doctors have not recommended any treatment only follow up every 3 months and in April new PET.
I am very scared about the diagnosis since it is very atypical and does not give much information about it.
Could someone with the same case give me some additional information and some hope?
thank you very much to all!

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swissie's picture
Replies 2
Last reply 2/12/2020 - 10:02am
Replies by: hxcadam, swissie

Hi guys,

Sorry for not getting back here, you have helped me in the past through some difficult times.

My melanoma story started in 1991 when i had my first mole removed (which turned out to be melanoma). It was thick, but the only check done at that time was the 3 months check.
Fast forward to 2008, when i noticed a mole changing.
Went to a dermatologist in May to have it checked. He told me it looked totally fine. However, i wanted it removed, which he did in September.

In September it turned out to be melanoma after all. SND turned out to be uncertain, but they thought it was ok.
In 2009 (July) i felt a lump in my lymph nodes, which turned out to be cancer.

I participated in a double blind trial with ipilimumab (10 mg).
After getting a collitis after the 4th infusion i was certain i was on the ipi side. I ended the trial after 8 infusions as a result of side effects.

Last year the trial was unblinded and i happed to be in the placebo group.
So even more than before, happy to be out here.

Yesterday i went for my yearly check which resulted in either the removal or a punch biopsy today.
In the last 10 years they removed one mole which was atypical and i had many pictures taken and reviewed after a couple of months.
Getting nervous...

I'm so glad the developments continued so even if things turn out to be cancer again, the situation today is so much better than it was 11 years ago.

Let's hope for the best. Results to be discussed on the 26th.
Sabine

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jjk17's picture
Replies 14
Last reply 2/12/2020 - 2:22pm

Hello All!!

I have been MIA for a while, but I have still been getting on and keeping up with everyone's post as much as I can! I was reaching out to get some guidance/opinions!

I am still cancer free!! Scans have been clear since December 2017. Still going to Derm and Oncologist every 3 to 4 months for scans ect. My husband and I are throwing around the idea of adding to our family...But honestly I am scared to death. We have consulted with OB and Oncologist...Both have different opinions, but think it should be fine, but of course cant say one way or another...

Real quick run down on my history: Diagnosed in September 2017 Stage IIIC, ulcerated spot on upper inner thigh. Surgery and removal of two nodes. Biopsy report showed cancer cells in one of the nodes. Started immunotherapy in January 2018, Nivo. Stopped once for high liver functions. Restarted until September 2018, stopped end of September, kidney was failing due to Nivo. No immunotherapy since then and still clean scans.

Did pregnancy bring out melanoma...??? Million dollar question everyone wants to know! So here we are...do we try and something comes up during or after pregnancy,could it be worse or dare not to risk. I want to be around for my family.....

That's where we sit....What to do...

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Lori0529's picture
Replies 8
Last reply 2/12/2020 - 8:28pm
Replies by: Bubbles, Lori0529, JudiAU

Dark “skin tag” on upper right thigh observed in November, 2015
11/12/15 Melanoma Diagnosis
Breslow Thickness 2.85
Clarks Level: Four
Ulceration: Present

12/1/15 Wide Excision Surgery
Sentinel Node Biopsy
At follow-up visit the doctor indicated that Sentinel Node Biopsy was negative, but in reviewing some of the report details it says “faint focus of additional activity”

Thankfully, I have not had any health issues since the surgery.

Have continued regular dermatology visits as well as CT scans of the Chest, Abdomen, and Pelvis/ follow up visits with a Melanoma specialist every 6 months.

All has been well …. until today.

Had a doctor visit today following CT scans last Friday.
The scan report indicates there is a 19 mm suspicious lymph node in the right groin.

Within the next 2 weeks he wants to proceed with:
Brain MRI
Whole Body PET scan
CT Scans of Chest, Abdomen, Pelvis
Biopsy
Surgeon Consultation

He indicated that if this lymph node is positive for melanoma, he would recommend:

Immunotherapy followed by surgery

I have an appointment with the surgeon tomorrow.
Are there specific questions I should be asking?
The possibility of a complete lymph node dissection sounds very scary.

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ScaredPartner's picture
Replies 7
Last reply 2/13/2020 - 12:17am

Hello all,
Had the most amazing consultation with a new group of doctors this morning looking for a new way to save my partners life.
I try my best to stay on top of new treatments, but the one they offered this morning was something I haven’t heard of yet, and I can’t find the trial number when researched.
TCD14678

This will be a phase 2b trial, not officially opened yet, but within the next week.
It is a PD1 combined with a CDK 6/8 inhibitor.
The idea sounds great, but it’s the unknown.
I believe the pd1 is cemiplimab which I haven’t seen use of in melanoma specifically yet.

Do any of you have any info on this?
This is of course a trial after he progressed on the usual ipi/nivo, and now targeted as well.

Just looking for anything at all.

Thanks!

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Anonymous's picture
Anonymous
Replies 7
Last reply 2/13/2020 - 1:58am
Replies by: Anonymous, Treadlightly, SOLE, sj, Julie in SoCal

Any stage 2 survivors here? Love to hear your story

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Ran's picture
Replies 3
Last reply 2/13/2020 - 4:58am
Replies by: Ran, Bubbles

Hello, I am a Chinese and my aunt have been diagnosed with melanoma. We found it late and missed the best period. The worst thing is that the best cancer hospital in China do not allow patient hospitalization because of the coronavirus. It is still unknown when the situation will be better, so we have to find a hospital which can receive patient. Here is her diagnose:

Beijing Cancer Hospital
Disease diagnosis
Name: Huiqin Qu
Gender: Female
Age: 57
Department: Kidney Cancer Melanoma Medical Ward
Admission date: 2020-01-17
Discharge date: 2020-01-22
Work Place: Gaoyang mining company

Brief condition:
1. Anal downbearing distention.;
2. Bowel habit has changed for 3 months.

Diagnosis:
1. Anal canal melanoma metastasis;
2. Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs);
3. Director Jun Guo suggest plan T1 Combined liver interventional chemotherapy. Taking into account the late liver intervention, the drugs for this chemotherapy were injected from platinum intravenously.

2020-01-18
Start T1 Plan chemotherapy:
1. Temozolomide 320mg, d15
2. Cisplatin 40mg, d-3
3. rh-endostatin 15mg, d-14
W4Q
Body reaction: feel sick and vomit

Suggestions of therapy after leaving hospital:
1. continue rh-endostatin until 2020-01-31. Keep monitoring blood routine, liver and kidney function(1-2 times/week). If the patient has symptom like fever, fatigue, nausea, vomiting, etc, improve the test in time and give symptomatic treatment. If leukocyte<2.0*10°/L or Neutrophil<1.0*10°L, patient can be treated as G-CSF. If platelets<50*10°/L, patient can be treated as interleukin-11 or TPO;
2. Return to the hospital on time for liver intervention therapy before improve blood routine, biochemical and coagulation functions;
3. Carry out plan T1 chemotherapy in the second period and make an appointment for hospitalization in advance;
4. Review of chest and abdominal pelvic CT and evaluate the efficacy;
5. Subsequent visit.

Leaving hospital diagnosis:
Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs)

If you have any suggestions, please let me know. I and my families will appreciate your help very much.

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/13/2020 - 1:53pm
Replies by: ed williams, tkoss

I am over 3 years out from diagnosis as 3a and I am NED. In a recent appointment with my Derm he restated a point that he has been saying consistently through my surveillance, that the research indicates that regardless of when a recurrence is discovered (actively through surveillance or when symptoms appear) the standard of care is the same and the outcome will be the same. Meaning that treatment will work or it won’t.

I am from Canada so I know standards of care differ by country.

Has anyone else had similar conversations/experience with members of their care team

What can be asserted without evidence can also be dismissed without evidence.

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jennifer83's picture
Replies 6
Last reply 2/13/2020 - 9:51pm

Hello,

As some may have followed, I developed hypothyroidism after my third ipi/nivo treatment. for stage IV melanoma (mets in liver and lungs) I'm taking meds for it now.

My nurse said that my liver levels are elevated, but not enough to be too concerned about yet. Just wondering if anyone knows when I should become concerned?

My ALT at last test was 51 U/L. It's crept it's way up from 17 to 51 over the last four months.

My AST at last test was 49 U/L. It's crept it's way up from 22 to 49 over the last four months.

Any weigh in on when I should be concerned would be great. I go for my scans Saturday and am hopeful for good a good response!

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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ArtandAmy's picture
Replies 9
Last reply 2/13/2020 - 11:46pm

I have been following this page since September but I am finally posting as I am looking for everyone's guidance. Following this page has made talking to my oncologist easier. I always felt like I could have an educated conversation because of everyone on this page. I was diagnosed with 3b back in 2016 and had a few years of clear scans. I was diagnosed Stage 4 in September with cancer in 7 different areas in my body. Bones, Lung, Spine, it's not good. I am BRAF positive, 47 with 3 kids under 10. I want more time. My last scan showed no new cancer but the cancer in my bones (hip., shoulder , spine) show no signs on shrinking. I am on Zelboraf and Collectic (targeted therapy). We discussed giving the therapy more time to work or switching to IPI/NIVO or Keytruda. We like our Oncologist but he is not one of the Melanoma cancer doctors that everyone talks about. I am posting tonight for everyone's thoughts. Should we make the 4 hour trip to Sloan in NYS to see that Doctor Chapman that people talk about? My pain is not controlled and that is tough. The spin cancer causes numbness tingling and all sorts of problems in the digestion area.. I need support so tonight I am reaching out to this great group. Is there hope. Is there better treatment for pain in the spine.. I thank all of you in advance.
Art and Amy in NY

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donna conn's picture
Replies 9
Last reply 2/14/2020 - 9:19pm

I started on tafinlar/mekinist and initially did well except for some nausea and vomiting, then about 2 weeks into it started in with the chills and fever. I stopped the drug for a few days, but had a return of chills and fever so I had to stop it again. When I took the next dose 2 hours after ingesting it I had the most severe headache which was unbearable sending me to the ER for pain relief. I took another break from the meds and when I started them up again the same thing happened with a headache sending me back to the ER. After another break , I resumed the medication at a half dose with my sister, who is a nurse helping me deal with the side effects. She had me take two extra strength excedrine one hour before the 75 mg tafinlar and when I took the half dose, I didn’t get a headache, but started having extreme pains in my neck, shoulders, arms, and legs. I took Tylenol 500mg, ibuprofens 800mg, and finally 5 mg of oxycodone without any relief. I ended up in the ER again where they gave me 1mg dilaudid but that didn’t take the pain away, it just made it a little more bearable, so they finally gave me 1 mg of dilaudid and 1 mg of Ativan the next thing I remember was waking up the next day at noon. Has anyone had any similar experiences? If so how can I deal with taking this medicine and not having to go to the ER after taking it?

Donna

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