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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Hi guys, i imagine some of you may know and have experience in this, does either a Colonscopy or a Endoscopy reach the Jejunum area of the small intestine? Apparently thats where the "light up" occured in my CT & PET scans...any word on this would be appreciated, i couldnt find any answer on the web, Mayo, Amercan Cancer etc...thanx

Im Melanoma and my host is Mike..

www.covvha.net

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Subject: The Anti-Cancer Revolution --- starts on Monday... note there will be an encore weekend edition if you miss any talks

Do you want to know why chemotherapy and radiation are considered the norm for cancer treatment? It might seem crazy if you’ve done enough research, but the answer is really quite simple. For years, people have chosen these treatments because they didn’t even realize they had a choice in the first place.

Chemo and radiation are pushed so much by the mainstream, they’re seen as not just an option, but the "only" option. With cancer statistics on the rise, it’s more imperative now than ever before to understand how naturopathic oncologists and integrative doctors have been successfully fighting cancer.

It’s time for an Anti-Cancer Revolution.

From June 17-23, 2019, you can learn from the world's top natural healing (and living) experts, integrative doctors, and naturopathic oncologists, including our Founder and Chief Medical Officer, Dr. Antonio Jimenez!

These experts will share natural ways to support your fight against cancer using nutrition, oils, homeopathy, cellular detox, fasting, ozone therapy, botanical chemo, hyperbarics, epigenetics, and more!

>>The Anti-Cancer Revolution (register here now!) is online and completely FREE!<<

The Anti-Cancer Revolution is for YOU, if you want to:

Supplement conventional approaches with natural methods
Find an entirely natural approach to fighting cancer
Cease being frustrated by the lack of options
Reduce side effects and prevent relapses

WHY ATTEND?
Your host, Ryan Sternagel, received devastating news on his son's first birthday: a stage IV cancer diagnosis. His family was already living what they considered a "healthier than average" life… they ate good food, and stayed active and happy.

Ryan deeply researched the disease and how to protect his son from the damage of conventional treatments. Ultimately, they shifted every aspect of their lives to remove the cause. Now, he'll share what he has learned (and continues to learn) from the world's natural health and healing community!

Join us in the revolution to learn more about:

Root causes and targeted therapies
How to ask more informed questions of your health pros
Choosing the right foods and supplements
Anti-cancer environmental and lifestyle changes
Reducing toxicity and increasing treatment efficacy
Understanding alternative treatments
Cutting-edge cancer testing (to avoid relapse!)
…and so much more!

Register today to ensure you’ll have access to all of this valuable knowledge — and don’t miss out on Dr. Tony’s information-packed talk on the Immune System and Cancer!
>> Learn natural anti-cancer strategies when you register for free today! <<

https://anticancerrevolution.com/?idev_id=25539

Blessings and Love,

Hope4Cancer
Communications Team

P.S. When you register today, you'll also receive The Ultimate Cancer-Proof Home eChecklist, a powerful 10-page tool to help remove toxins from your home, starting right now!

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/16/2019 - 9:58pm

I am starting Opdivo tomorrow and wanted to see if you have advice for me. Is there anything I should do to prepare?

I have been researching and it looks like it’s hard to know how each person responds. I would love to hear your thoughts.

Thank you!

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Autoimmune Secrets Summit

https://autoimmunesecrets.com/ sign up here

Here’s the schedule:

MONDAY, JUNE 17: Episode 1: Autoimmune Disease Exposed: Preventing & Beating on All of the 80+ Autoimmune Conditions

TUESDAY, JUNE 18: Episode 2: When Your Body Attacks: How to Win the War Against Lupus, Arthritis & Thyroid Disease

WEDNESDAY JUNE 19: Episode 3: Missing Puzzle Pieces: Can your Mind be Restored? Exposing Alzheimer’s and Dementia

THURSDAY, JUNE 20: Episode 4: The Truth About Lyme Disease, Toxins & Parasites

FRIDAY, JUNE 21: Episode 5: The Gut-Brain Connection

SATURDAY, JUNE 22: Episode 6: Autoimmune Connection with Obesity, Diabetes & Cancer

SUNDAY, JUNE 23: Episode 7: Essential Oils, Innovative Dietary & Lifestyle Approaches to Autoimmunity

MONDAY, JUNE 24: Episode 8: The Answer to Neurodegenerative Decline, Feeding Gut Microbiome & The Microbiota-Gut-Brain Axis, Brain Exercises, Heavy Metal Detox, plus Vaccines & Autoimmunity

TUESDAY, JUNE 25: Episode 9: Remarkable Dietary & Lifestyle Solutions & Preventions to Depression & Anxiety

WEDNESDAY, JUNE 26: Episode 10: Nature’s Weapons Against Disease: Healing Foods, Herbal Remedies & How to Recognize & Combat Triggers

In Autoimmune Secrets, 50 doctors, scientists, researchers and survivors explore the real causes and solutions to lupus, multiple sclerosis, thyroid disease, rheumatoid arthritis, lyme and even Alzheimer’s and dementia plus many more!

This is information you likely won’t get from mainstream sources.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Melody55's picture
Replies 4
Last reply 6/15/2019 - 6:21pm
Replies by: lkb, ed williams, Julie in SoCal, Anonymous

I’m new to the forum. Diagnosed in Dec 2018. Had surgery in Jan 2019. Started Opdivo in March. My melanoma was at the base of my fourth toe. My surgery resulted in the amputation if 3 toes. Currently my scans are good. I’m scheduled for -2 treatments -1 every 4 weeks. I’ve had some side effects but have managed. I’m just so glad to find this forum. It’s hard to find someone to talk to

Melody 

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Danish study links hydrochlorothiazide, a diuretic to increased risk for lentigo and nodular melanoma.

https://www.medpagetoday.com/hematologyoncology/skincancer/73157

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Maureen038's picture
Replies 6
Last reply 6/14/2019 - 3:54pm

My husband, Bill had scans yesterday and they were excellent!! It’s been such a long journey with 3 clinical trials, 3 VATS surgeries, 1 liver surgery, DTIC and now being on the second Her2 drug regimen after he had lung nodules on the first drug. Thanks so much to Sloan-Kettering for finding out he has an over expression of the Her2 mutation. He has some neuropathy in his fingers and feet and he has restless leg syndrome, but he is doing so well!!
Thanks to the many wonderful people on this board for helping me with awesome advice and support especially Celeste, Brian P and Ed!! I hope you are feeling better Celeste!
Love to all!
Maureen

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RichInLife2's picture
Replies 2
Last reply 6/14/2019 - 1:55pm
Replies by: Bubbles, RichInLife2

Turns out that fecal transplants to improve gut biome by transferring beneficial gut flora can also transfer harmful bugs too. Researchers will have to move more cautiously in the future, screen donors and their samples. I think that this also means that any hope of fast-track trials in the near future are probably dashed.

https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-pote...

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guynamedbilly's picture
Replies 2
Last reply 6/14/2019 - 11:19pm
Replies by: gopher38, Bubbles

I've reached the first fork in the road that I am having trouble deciding on. I have possibly six lesions in my lungs and possibly two in my liver, along with others that have recurred in my skin.

My primary Oncologist has recommended stopping immunotherapy currently and not undergoing radiation for tumors in my lungs and instead signing up for a trial for MGD009. I think one of the reasons they recommend this route is because it's an easier treatment path than radiation and all, and it's a promising drug also. There's only a possibility that I could get on this trial anytime soon. I don't know the odds, but it's not guaranteed.

The 2nd opinion is to continue immunotherapy and add radiation to the two largest, riskiest lesions in my lungs. Also, start another round of IPI/Nivo. IPI/Nivo did cause the lesions in my liver and one that was near my kidney (that we are unsure of atm) to shrink, but the ones in my lungs still grew. I have not had radiation treatment internally yet. Best hope is an abscopal effect response will trigger an immune response in the other lesions. This is all while waiting on my TIL therapy cells to hopefully mature properly. The big wrinkle to me is I showed three potential trials from my primary Onc to the 2nd opinion and the one they picked out and liked best was the MGD009 trial.

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Kelley888's picture
Replies 5
Last reply 6/15/2019 - 10:50am
Replies by: Melody55, Kelley888, MelMel

Hi. I have consulted this forum often in the last three months, but this is my first time posting. I was misdiagnosed in Dec. 2018 with an ovarian adnexal mass (grapefruit) that turned out to be recurrent melanoma (15 years after a 1a tumour was removed with negative SNB). A small met had also developed under my breast that three doctors had dismissed as nothing. On the day of the surgery by a Gyno-oncologist, I pointed out the breast lesion, which had grown considerably. I think he may have realized at that point that he was not dealing with a gynaecological issue, but he operated anyway. The preliminary pathology for both the mass and the lesion was positive for melanoma.
It was a nasty recovery and, between the surgery and the first dose of Keytruda, the blobs spread like wildfire. About 30 subcutaneous lesions developed in the week before and after my first treatment as well as lung/adrenal/liver/pancreas mets.
I had hyperthyroid issues, now finally under control, as well as insane fatigue and pain in my lesions and everywhere else. Lots of bizarre side effects that came and went. Most of the visible lesions have disappeared. Not sure about visceral mets, the CT will be done down the road. I just did my 4th dose three days ago. I had been feeling almost normal. By yesterday, I had abdominal pain and nausea that was absolutely insane. Today the nausea is gone but my gut still hurts a lot. Not as much as yesterday, but I have trouble walking. Have any of you experienced anything like this?

Kelley

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MarkR's picture
Replies 5
Last reply 6/16/2019 - 2:38am
Replies by: MarkR, lkb, Mark_DC, WithinMySkin

Went to see the Dr today to get the MRI & CT results from earlier this week after 3 months on Nivo Mono following progression earlier this year. Some good, but not great results, in that the Lung nodules are ‘stable’.

He did say there was a very small amount of growth in some but believes that may be some enlargement due to treatment. When I was on Ipi / Nivo my 3 months scans actually showed progression to my lungs (although it wasn’t identified as that at the time) and then I had a partial response at the next 3 month scan. I’m hoping the pattern repeats itself this time.

As I haven’t had any side effects as yet - its on with another 3 months of Nivo mono and see what happens in 6 months

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MelanomaMike's picture
Replies 4
Last reply 6/16/2019 - 4:28am

Quick question guys, i began the search for ClinicalTrials here on MRF under the EMERGINGMed.com section, it asked for my profile, mek, mek2, braff, cd1 hundreds damn near of these abbreviations what exactly is this? And how come i wasnt told what my melanoma profile is? Is it a test to find out what DNA structure i have? What is the official term that this is called ??? Please help!!!!!! Thanks guys

Im Melanoma and my host is Mike..

www.covvha.net

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Scooby123's picture
Replies 1
Last reply 6/13/2019 - 3:54pm
Replies by: Scooby123

Hi all , anyone having issues with posting , I write a post to put on but error always comes up.
Scooby

Lynda

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MelanomaMike's picture
Replies 7
Last reply 6/14/2019 - 7:49pm

Hi family, well, as my last CT scan lit up, my small intestine lit up brightly in the Jejunum area, explains my new bowel habits, watery at times and yes, you guessed it, blood. Sorry for the Graphicness of it haha...ok, so that we already knew, but now theres a Light Up in my right butt cheek! Ha! It must be deep cuz i cant feel it like half the tumors that grow on me, either the scans catch em, or i catch em!
So, that explains the mild pain iv been havin lately when i roll over at night in the fetal position! It felt just like a Bed Spring! Atleast thats what i thought, but in hine sight, we have a fabulous topper by "My Pillow" and it is thick,! Theres NO Springs gettin through to any body parts with this Topper! (Their pillows are great to! Im a paid spokesperson YA RIGHTT!)) I wish...
And, of course the tumor on my left side (Stomach) is gettin yanked out in July, that one were aware of already. Thank God thats it! This Mel Monster thinks it can go anywhere it wants! And sadly it can..well, except maybe our " Hair" haha....
Well family, thats my current standing, dont think Opdivo is gunna help anylonger, IL2? Interleukin type stuff? Thats what my Oncologist and top Mel Doctors are saying other then surgerys, shes in with docs at 2 other Kaiser locations, they also have spoke of Trials....
Talk 2 ya soon guys, Mike

Im Melanoma and my host is Mike..

www.covvha.net

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