Adrenal Cancer Hope

Adrenal Cancer Hope When the world says, "Give up." Hope whispers, "Try one more time." All of us have had our lifes touched by Adrenal Cancer.

Adrenal Cancer Hope is a grass roots patient advocacy group that was brought together through the tireless work of Dr. Gary Hammer at the University of Michigan. The common theme in all our stories is that at the time we added the words "Adrenal Cancer" to our vocabulary we felt alone - no one should have to go through this alone.

Hi Facebook!!!  Would you all mind saying Happy Birthday to the One And Only MacDaddy!!!  Tomorrow July 1 he officially ...
06/30/2024

Hi Facebook!!! Would you all mind saying Happy Birthday to the One And Only MacDaddy!!! Tomorrow July 1 he officially turns 11 years old!!! I can't say enough about how much this Big Brown Dog has helped me!!! He's kept me moving and recuperating for his entire life!!! He's been such an amazing friend and of course he always has a seemingly limitless and unlimited supply of unconditional love for me!! I made him chicken breast on the grill today to spoil him. He's been doing so well since his health scare at Easter time!! I'm so happy to see him doing so well!! So please say hi and happy birthday to my big doggy!!! Thanks a million!!! Xoxo

03/17/2024

Hello Warriors!! Today is one of those days that's always so difficult. As many of you may have heard our Warrior Extraordinaire Emerald Cromwell has passed away earlier today. Emerald was always so committed, and compassionate, and has helped so many Warriors in her time with us!!. Yes, it's terribly heartbreaking. But she's not in pain now. Please send love and prayers to her, her loving family and friends in this most difficult of times. And may God bless all of us!!

I'm sorry for my recent lack of activity. You see, Mr Zuckerberg changed group stuff about a year ago, and I quit receiving notifications and updates. Ive also been super focused upon finding gainful employment again... I'm eternally grateful to be strong enough and healthy enough to work again. It's definitely been a battle... Rest In Peace Emerald. We'll truly miss you and your never-ending smile!! 💔💔🙏🙏

02/24/2023

Hi Warriors near and far!!! Would someone here be able to help Sue Olson Elliot and Hope Law fix a few issues with my GoFundMe that Hope so generously arranged on my behalf!!??. Please feel free to message either of them, or me, and we'll see if we can't fix things up a bit better!! Thank you and God Bless!!! Thanks to my Warrior Family for all the help & support!!! 💗❤💖❤️‍🔥

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01/13/2023

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“Weak people revenge. Strong people forgive. Intelligent People Ignore."
~ Albert Einstein

This!!!
01/13/2023

This!!!

10/31/2022

Hi Warriors near and far!!! Well, Facebook has apparently, updated this page for some reason, and in doing so they made changes that I and others didn't want to our privacy, etc. I'm not sure how to change things back to the way they were.. but I'll do my best ok Gang!! Happy Halloween!! 😊

Happy Friday Warriors..   🥰
07/24/2020

Happy Friday Warriors.. 🥰

A kind gesture can reach a wound that only compassion can heal. ~ Steve Maraboli

I don't begrudge anyone they're wealth etc... I don't like hypocrite asshats at all..  'The sky is falling, turn down yo...
01/25/2018

I don't begrudge anyone they're wealth etc... I don't like hypocrite asshats at all.. 'The sky is falling, turn down your thermostat, etc - but I'll just ride along in my G-6 that produces 100,000 lbs of CO2/hour???'

More than 1000 private jets are delivering global elites to the World Economic Forum in Davos to discuss the 'major threat' of climate change

06/17/2017

This is information about the results of using drugs recommended by the Caris Molecular Profile to treat ovarian cancer. However, I know that Caris has profiled somewhere around 100 ACC cancers as well. Troy Richards is an 18 year survivor of stage 4 ACC. He has had several recurrences and been treated with surgery and drugs that were a match based on the Caris Profile each time. He is currently NED. He never took Mitotane and never had EDP. Others have responded to drugs considered to be a match based on the profile. Dr. Rosenberg (oncologist) in Arizona and DeMeure (surgeon, recently moved to California and is working for City of Hope- no contact info available yet) are the two who have the most experience with interpreting the profiles. They will work with your oncologists.
Clinical Utility - Tumor Profiling with Caris Molecular Intelligence
Clinical research studies continue to demonstrate the clinical utility of tumor profiling with Caris Molecular Intelligence.
CARISMOLECULARINTELLIGENCE.COM

06/08/2017

Hi!! If you're here, then you should be looking at our other FB page as well. Look for Adrenal Cancer Hope on Facebook. It's a closed group for more privacy etc. Please ask to be added and we'll see that you are! Thanks - Alan Cupal

04/17/2017

Someone asked what immunotherapy was, and this is what I posted in ACCadvocate:
it's a form of treatment that is being used to treat a variety of cancers. It's the latest hope for cancer patients. It seems to be effective for cancers like melanoma and probably some other cancers, but most ACC patients are not seeing a response. However, some have had an incredible response. Immunotherapy is a broad term that basically means that the immune system is being activated to kill the cancer cells. Our immune system is like a 24/7 surveillance system looking for anything it considers "foreign" or not belonging in our bodies. It's better known for it's role in controlling infections. It's the system that is activated by vaccines to prevent viral infections. It probably works better for viral infections than bacterial infections, and there's another group of cells that are involved in killing bacteria. Some cancers can be recognized as being "foreign" by the immune system, and when this happens, the immune system can kill the cancer cells. But cancers are almost like living creatures within us, meaning that they seem "to think" of ways to outsmart the immune system. They don't "think", but cancer cells do have ways of literally hiding from the immune system so that they aren't detected and killed. At some point, a molecule (which is a protein with a very specific structure and shape) called PD-1, was identified on the surface of certain types of cancer cells. It turns out that several drugs were developed that can recognize PD-1, and make the cancer cells come "out of hiding". Once exposed, the immune system targets them and kills the cancer cells. Sometimes it's easier to explain things by using comparisons or analogies rather than trying to directly explain these things. Between immunotherapy, molecular profiling and genetic profiling, there are more questions than answers lately. None of these are "simple to understand". These are areas that people study for several years before being considered knowledgeable enough to work with and explain these things!! So for us to understand them becomes far more difficult. The more they learn about the tiniest parts of a cell function, and what those functions are, the more difficult all of this becomes to understand. These fields are advancing so quickly that no one can keep pace. Our doctors treating us cannot keep up. So how are we expected to? While it would be ideal to have the body's own defense system fight and destroy cancer cells, it isn't that straightforward. Now that these drugs are being used widely, they are finding out that there can be some serious side effects from the therapies. One of the articles is https://www.nytimes.com/.../immunotherapy-cancer.html... and another is https://www.nytimes.com/2016/08/01/health/immunotherapy-offers-hope-to-a-cancer-patient-but-no-certainty.html?rref=collection%2Fseriescollection%2Fimmunotherapy&action=click&contentCollection=health®ion=rank&module=package&version=highlights&contentPlacement=2&pgtype=collection. Since the New York Times is writing for "us" rather than doctors, these articles do a better job of explaining things :).

static01.nyt.com

04/17/2017

I emailed two of the experts in ACC and asked for their thoughts on immunotherapy. I'll summarize the two together, and I prefer not to mention who they are.

1) immunotherapy should only be done as part of a clinical trial

2) everyone should be tested for the PD-1 molecule

3) as with any treatment, this works for some (most likely those who have ACC that expresses PD-1 since not everyone was tested for PD-1) but has mostly not worked for others

4) immunotherapy is not recommended as the first choice for treating ACC. It should be reserved for use in patients who don't respond to other treatments.

a) I, personally, would say that if anyone has the cancer analyzed, and it is positive for PD-1, which is the target of Keytruda, then doctor and patient may decide it's feasible to proceed with this treatment rather than standard therapy.

b) For those who have responded and PD-1 expression is not known, it would be a huge contribution if the cancer was tested. That would help to eliminate speculation as to whether the expression of PD-1 is required or not for Keytruda to be effective.

5) All experts agree that surgery is the only known cure for ACC. The drugs are primarily to stabilize and shrink the cancer to improve outcome at the time of surgery. However, we continue to defy long-held beliefs. There are those who has a cancer that is highly sensitive to certain treatments.

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