› Forums › General Melanoma Community › I report it all! Important info on NKTR-214 – the PIVOT trial…
- This topic has 14 replies, 13 voices, and was last updated 5 years ago by
MelanomaMike.
- Post
-
- September 1, 2019 at 4:38 pm
I have been living with melanoma for 16 years. (Stage IIIb in 2003, Stage IV in 2010) I don’t have to tell any of you what hell that has been, nor what an absolute miracle it is that I am able to write these lines today. I have paid much in pain, stress, treasure, time, and emotional injury to those I love. And, just when I thought I was close to being free – I am now 1 year from the diagnosis of adenocarcinoma ex-goblet cell of the appendix Stage II replete with extensive surgeries and residual damage. I am still in the soup and working through issues as I must.I do not write this to have you feel sorry for me. I am far less injured, far less adversely affected than many on this forum. I am alive. I have an incredible support system in person and via most of you here. That said, I am tired. Tired of those who would support charlatans. Tired of trying to speak truth to power. Tired of being smacked around because I will not capitulate. Tired of being accused of being only “FOR MEDICINE” (The horror!!!) or being “AGAINST” anything vaguely “alternative”!!! I have eaten every vegetable daily!!! (Well…that’s not true…though I ate many in childhood I absolutely refuse to eat a rutabaga currently!!!) I have exercised most days of my life. I still do both, despite the diagnoses I carry. I have advocated those things as well as “good live cultures” in your food, the possible benefits of curcumin, the need for vitamin D, the pros and cons of NSAID’s – long before they were cool and all over the media. Just as importantly, if not more so – I have called doctors, pharma, institutions, lame research – your name it!!! – on the carpet whenever there has been a need.
Don’t believe me? You might find a few of these entertaining:
Regarding an A$$ who happened to be a doctor: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/12/hands-down-most-obnoxious-infuriating.html
A QUACK masquerading as a doctor…getting her weirdos to hijack cancer blogs: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/quack-watch-jerks-who-try-to-take.html
On being a rattie: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/09/info-on-test-for-pd-l1-and-availability.html
Just one example of calling out the FDA: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/sequential-nivo-then-ipi-orr-of-41-ipi.html
The disparity in medical care given to the haves vs the have nots:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/09/cancer-carefor-upper-crust-only.html
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/for-love-of-moneybms-roche-and-merck.html
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/if-money-access-to-cancer-carewe-have.htmlAnd don’t even get me started about clinical trial design:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/clinical-trials-and-patient-rightsan.html
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/patient-rights-in-clinical-trial.html
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/the-trial-of-trials.htmlAmerica’s strange health system: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/americas-highway-to-health-op-ed.html
Calling out “irrelevant” data published as if it were news:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/brain-mets-in-melanomaa-relatively.html
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/research-that-makes-you-scratch-your.htmlDemanding and yelling (not that anyone is listening) about the need for action/research on issues that I feel will impact melanoma patients:
Latency in progression in some vs the incredible speed of progression in others: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/reason-for-latencytime-between.html
Radiation combined with immunotherapy (not that long ago this was considered “dangerous”): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Blood assays that can be diagnostic as well as provide important info about response or progression: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=blood+assays
Adjuvant treatment: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant
Demanding cessation of the use (read sale) of interferon for melanoma as adjuvant: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/ive-said-it-before-ill-say-it-again.html
There’s more, but – here’s the latest – calling out Big Pharma – Nektar in paticular:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/nktr-214-bempegaldesleukin-with-opdivo.htmlSo yeah. I tell it like it is. From all sides of the aisle. As a trained medical professional and researcher. A patient in need of care. A thoughtful and discriminating consumer who doesn’t fall for ANYTHING just cause you’re selling it. One woman in a real big world filled with lots of hurt and suffering – some of which we can prevent and some beyond our ability to do so – willing to stand up for what is right, to fight for what all humans deserve, to call out charlatans – whether they work for the FDA, pharma, or on their own to scam unsuspecting, frightened and desperate peeps.
For what it’s worth. Hug your dear ones. Make sure those you love know that you do. Life comes with no guarantees. Wishing you all a lovely day. – les
- Replies
-
-
- September 1, 2019 at 5:10 pm
Les,
You have been through a lot. That has given you perspective. Your medical background has given you expertise. Your genuine heart has given you kindness and empathy. Thank you for speaking the truth. It is very beneficial for many of us on our melanoma journey. You are positively impacting many lives. Thank you! -
- September 3, 2019 at 3:19 pm
Celeste, so grateful for your VERY selfless participation and knowledge-sharing on this forum. I cannot adequately express how much your feedback has meant to me in this complicated journey.Big hugs to you and hope that you are doing ok and feeling better soon as you work through your own condition.
-
- September 3, 2019 at 5:34 pm
I have been on this site for 3 years and you are probably the only person that I believe what you post. I don’t research what you post, I take it as accurate information. When I tell others about this site your the only name I mention as a person who has a great deal of knowledge about melanoma and it’s treatment. I hope you continue to call people out who need to be called out. -
- September 3, 2019 at 7:29 pm
Wow! I remember you when you first came on board. What a journey you have been on! This board has always benefited from folks like you who have learned so much on their journey and take the time to share. So much has changed since I was a regular here. So many more treatment options! Back in the day there was surgery, Interferon and poison cocktails of chemo and not much else. I am an advocate of diet and exercise for improving overall health, but not as a cure. I am so pleased to hear how advanced mm patients are seeing results that just were not available a few years ago. Thank you for being such a strong advocate for others in need of information and hope. -
- September 3, 2019 at 8:32 pm
Awwww! Stop making this former ex-con, drug guzzling now Melanoma stricken fool teary eyed! Celeste, you are Fab-U-Luss! In every way really, you bring so much to the MRF roundtable & your doing so AFTER your victory against Mel, as you know, alotta folks disappear after their deemed NED (dont blame em one bit!!) , not everyone, we have folks check in still…
Bubs you rock! I love your witty journalism of Chaos in the Life & Times of Celeste McBubbles! We love you & now lets kick this “next” BS you have going on in the Ass!! Hugs and more hugs & cyber hugs! -
- September 4, 2019 at 12:59 am
Hi Les, Celeste, and Bubbles (I think of you as all three at once!)Sorry, I’m late in replying, but wanted to make sure I did. First, your body of evidence and your advocacy never have to be justified on here. Your years of dedicated work speaks for itself and you are so valued. I know we have some hard discussions on this board about alternative approaches, and I know we don’t have all the answers, and its difficult to speak our concerns about these issues but you have ABSOLUTELY always approached these with the utmost integrity and intentions of truly supporting the patients going through this horrendous disease. Your breath of knowledge is undeniable coupled with a beautiful righteous anger on the patients behalf. II’ll say this as well, you can definitely apply the smell test to some of these and any small amount of critical thought tells us some of these are bogus. We all have to provide our own critical thought as well. I’ll give you my biggest compliment: If I ever get a diagnosis, there is no one else I would want or trust to be with me in the office than you. It’s not even a second thought. We are lucky to get you virtually! love and hugs, thanks for taking the heat for us, I know it takes a toll sometimes.
-
- September 4, 2019 at 2:03 am
You are the Rascal are you not?Of all the people here that have bitch slapped and gently nudged people to empower themselves with knowledge, education, research and brains, you stand far and above any of those that have posted over my years since 1996 on this board;.
You hold a singular , measured, educated, informed and outspoken voice with a silent scream that I hear, and hope others do as well.
So. if I may, and in deference to your husband; offer a gentle………………nah, make that a big sloppy sloppy kiss on your cheek.
You have made a world of difference here Miss Melanoma Brainiac and do not forget that.
Support , I have found is a lonely road.
Charlie S
-
- September 5, 2019 at 12:26 am
Haha…love your post for Bubbles!
-
- September 4, 2019 at 8:04 am
Thank you for all your dedicated and hard work over the years. It seems we know a lot yet there is so much more to learn. I guess the following two Socrates quotes resonate with me:
“The only thing I truly know…..is that I know nothing.”
” I cannot teach anybody anything, I can only make them think.”
Melanie
- You must be logged in to reply to this topic.