OK, for those of you catching up or joining in . . .
After being diagnosed with stage 4 ovarian cancer a couple of years ago, and having EVERYTHING removed, (even "AAppy" my Adorable Appendix), I did a couple of rounds of chemo, mixed with clinical trials, and recently the Milo/MEK (rhymes with "I know, Blech!") clinical trial.
My current medical program is "Try a treatment until it fails, then try another until it, too, fails."
My life expectancy is summer 2017. That's when they run out of stuff to try. For Low Grade Stage 4 Ovarian Cancer, death is expected but we get a couple of pain-free fun years first.
Am I discouraged? No way! But y'all understand "dog years". . . I now mirror hamsters, for whom one year equals 50 human years. But hamsters have the right idea:
Pack it all into the cheeks and let the rest go!
And what woman over 50 wasn't already thinking that anyway? Omm. . .Hammy. . .Omm!
And so. . . there was a local woman on the Milo/MEK trial whose stage 4 ovarian cancer tumors disappeared because of MEK, and she's still happy as a clam, cancer-free after over a year on Milo/MEK. YAY!!
We can't even begin to feel as jubilant as her family who loves her dearly. Wow. Great job! Keep on going!
I didn't get the same result. At all. My tumors kept growing with MEK. The rash was so bad I couldn't move properly. I couldn't stay awake more than 8 hours a day (did I mention I'm a mommy?)
So I quit the trial. Acne-Be-Gone!
OK Doc, what next?
Doctor offered another chemo (obviously not first choice, I tried and failed those), or (obviously also not first choice) hormone therapy. Or a clinical trial for another toxic drug that tends to compromise your immune system.
"But I want immunotherapy."
My medical team was sorry that they had no immunotherapy medicine or clinical trials available at their hospital for my ovarian cancer, and wished me luck in my search.
And with that, I was on my own.
My husband was surprised. The hospital had, 2 years ago, rushed me into surgery. They then rushed me into chemo. They zipped me back into chemo as needed. But now, they're not so quick to ask if I've managed to find some clinical trial immunotherapy treatment or whatever.
You'd think they'd say "OK, but come back next month anyway so we can check you over."
Nope.
"And let's make sure you have your port flushed so you don't die of a port infection."
No alert came in.
Or at least " Call us and let us know how you're doing, and whether you found something."
Nope.
Or, "Here's a couple of phone numbers to help get you on your way."
Nope. Nada. Nichts. Sayonara! Avocado!
To be honest, when I last talked to my doctor I didn't even actually know what, exactly, immunotherapy is.
"Maw, Paw, Ah'm a-goin' out to look fer gold in Californ-y. Never seen it, don't know how they git that gold, but ah'm a-goin' and maybe ah'll get rich from gold."
"OK Bye, Honey! If you ever need us to forward your medical records, be sure to write!"
Maybe my perception was off. I mistook health-givers for caregivers. And that mistake made me feel somehow excommunicated when, in one day, they pretty much let me go solo to chase a rainbow. And my time is running out. A day spent in trying-to-figure-out-who-to-call-for medical-treatment is a LOT of time when you only have a year left. It took me weeks.
PTSD
(post traumatic stress disorder) thankfully isn't kicking in right now, because
I'm still in the fight for the next stage, which seems to be entirely
dependent on self-motivation but it's certainly within sights. Maybe that's a key to kicking PTSD. I can stress-out my own self now; my trauma can be self-induced. I'm free, my serious threat stems from me only.
I understand that my perceptions of the delinquencies of my own actions to combat and survive cancer still exist, and my cells are still under siege. But I am changing the focus, gradually making it more positive if not less intense. I'm turning self-doubt into positive activity, I'm walking away from toxic cures in order to focus on cures that come from within myself.
So with tumors growing and no real future plan, off I went.
People always say "Be Your Own Advocate."
But if you're like me, and visualize spoken words as written, but are also a little dyslexic, it's hard not to interpret that as "Be your own Avocado."
Really? Truly?
Yes. I need to be my own avocado, and so I shall be.
"Think Green" has a whole new meaning now.
On My Own?
So off I went with a limited (and possibly skewed) vocabulary, no science background, diminished energy, and my dream for immunotherapy that was a bit too nebulous and uneducated for any real action. I wanted it but didn't know why or how to get it.
What the heck IS immunotherapy? Sure, we can guess that it's when your immune system somehow fights cancer.
But it's not an address that you can plug into your GPS: I was wishing and walking in a fog with dreams and no direction.
Wow! Fifteen again! Cancer keeps us young.
And growing. Yup, my tumors are growing.
When I began my search for immunotherapy, I had no idea what "NIH" was. It turns out that it stands for the National Institutes of Health.
It's like a HUGE University, where every building is for a different health issue. The National Cancer Institute is one group/building there, and I think there is also a National AIDS Institute, etc.
Anyway, this huge facility, run by the USA Federal Government, is in charge of all USA clinical research trials. If your research on mice went well and you want to test it on humans, you HAVE to go through NIH. Trials on humans go through a few Phases, and after success on all 4 or 5 phases the Food and Drug Admin (FDA) will approve the drug, and then doctors can prescribe it.
NIH is "Clinical Trial Central." Ta-Da! And less than 2 hours' drive from my house!
But you know what? NIH can't do EVERY trial there, because that would skew results, yeah? Trials need to be ongoing in lots of different places around the country. Sure, that makes sense..
But at NIH, the central authorizing agency of every friggin' trial in the USA, they'll only discuss trials that they are doing at their own hospital, and won't discuss the other dozens of trials available nationwide that might be more suitable to my particular needs.
So if you go in and say "Oh my goodness you guys approve any and all clinical trials for cancer patients, and I really was hoping for blah and blah blah" your request will fall on deaf ears.
Like my own hospital, if they're not offering it, they're not offering it. Period. On your own.
But they're not stupid, either.
So this is how I worked it:
I contacted EmergingMed (private USA company that matches clinical trials with patients, with no cost to patient). They matched me with 17 possible clinical trials in my area.
I researched every drug listed on all 17 clinical trials (YouTube, cancer.gov, NIH Dictionary) and put them on my own personal drug list in alpha order. By the time I had done THAT, I knew what most of these drugs were or did, but I didn't understand all of them.
When I went to NIH, I had a working vocabulary of what they offered, and loads of simple questions which they could answer in simple terms. Bless their hearts, "simple terms" is a challenge in their field, but they did well.
By the time we left, I knew what we needed to know.
I have a "dream cocktail" of immunotherapy drugs.
By prescription, they are not available for ovarian cancer, although they are FDA approved for other cancers.
Some of the cool ones are available as clinical trials, but you're also not allowed to add other meds when you're on a clinical trial. So my cocktail is possible, but can't be met. Yet.
While we were walking out of a day-long meeting with NIH people, we met a woman who was just about to start her clinical trial, HuMax IL-8 (an immunotherapy). Turns out we have the same cancer (low grade ovarian is very rare). Her treatment was on my list of questions but somehow we missed it. In turn, this lady had never heard of the clinical trail that was presented to me as the only low-grade ovarian cancer immunotherapy available. Hmmm. . . Fishy?
I didn't get my ideal immunotherapy cocktail. We'll probably sign up for the clinical trial that NIH offered but we will continue to shop around fairly aggressively until we find the right treatment match.
I'll actually fight for that, if my kids and hubby lighten up the load a little so I CAN research and do that. Or, my entire life might be lost to picking-up and laundry. And honestly I don't think I'd be the first woman to die for that reason.
Perhaps, in the meantime, a strawberry daiquiri cocktail will suffice. . .
Here's me, after the NIH day, at the BEST Thai Restaurant nationwide, Bangkok Gardens in Bethesda. NO atmosphere, great service, but every single hint of flavor was more perfect than you could hope for. And every flavor balance was in tune. It was the oral equivalent of the best orchestra you've ever heard.
After being diagnosed with stage 4 ovarian cancer a couple of years ago, and having EVERYTHING removed, (even "AAppy" my Adorable Appendix), I did a couple of rounds of chemo, mixed with clinical trials, and recently the Milo/MEK (rhymes with "I know, Blech!") clinical trial.
My current medical program is "Try a treatment until it fails, then try another until it, too, fails."
My life expectancy is summer 2017. That's when they run out of stuff to try. For Low Grade Stage 4 Ovarian Cancer, death is expected but we get a couple of pain-free fun years first.
Am I discouraged? No way! But y'all understand "dog years". . . I now mirror hamsters, for whom one year equals 50 human years. But hamsters have the right idea:
Pack it all into the cheeks and let the rest go!
And what woman over 50 wasn't already thinking that anyway? Omm. . .Hammy. . .Omm!
 |
| Sleepy, Zitty Girl Quitting MEK |
We can't even begin to feel as jubilant as her family who loves her dearly. Wow. Great job! Keep on going!
I didn't get the same result. At all. My tumors kept growing with MEK. The rash was so bad I couldn't move properly. I couldn't stay awake more than 8 hours a day (did I mention I'm a mommy?)
So I quit the trial. Acne-Be-Gone!
OK Doc, what next?
Doctor offered another chemo (obviously not first choice, I tried and failed those), or (obviously also not first choice) hormone therapy. Or a clinical trial for another toxic drug that tends to compromise your immune system.
"But I want immunotherapy."
My medical team was sorry that they had no immunotherapy medicine or clinical trials available at their hospital for my ovarian cancer, and wished me luck in my search.
And with that, I was on my own.
 |
| The clock is still ticking |
You'd think they'd say "OK, but come back next month anyway so we can check you over."
Nope.
"And let's make sure you have your port flushed so you don't die of a port infection."
No alert came in.
Or at least " Call us and let us know how you're doing, and whether you found something."
Nope.
Or, "Here's a couple of phone numbers to help get you on your way."
Nope. Nada. Nichts. Sayonara! Avocado!
To be honest, when I last talked to my doctor I didn't even actually know what, exactly, immunotherapy is.
"Maw, Paw, Ah'm a-goin' out to look fer gold in Californ-y. Never seen it, don't know how they git that gold, but ah'm a-goin' and maybe ah'll get rich from gold."
"OK Bye, Honey! If you ever need us to forward your medical records, be sure to write!"
Maybe my perception was off. I mistook health-givers for caregivers. And that mistake made me feel somehow excommunicated when, in one day, they pretty much let me go solo to chase a rainbow. And my time is running out. A day spent in trying-to-figure-out-who-to-call-for medical-treatment is a LOT of time when you only have a year left. It took me weeks.
I understand that my perceptions of the delinquencies of my own actions to combat and survive cancer still exist, and my cells are still under siege. But I am changing the focus, gradually making it more positive if not less intense. I'm turning self-doubt into positive activity, I'm walking away from toxic cures in order to focus on cures that come from within myself.
So with tumors growing and no real future plan, off I went.
 |
| I AM my own avocado |
 |
| And I avocado for others too |
But if you're like me, and visualize spoken words as written, but are also a little dyslexic, it's hard not to interpret that as "Be your own Avocado."
Really? Truly?
Yes. I need to be my own avocado, and so I shall be.
"Think Green" has a whole new meaning now.
On My Own?
So off I went with a limited (and possibly skewed) vocabulary, no science background, diminished energy, and my dream for immunotherapy that was a bit too nebulous and uneducated for any real action. I wanted it but didn't know why or how to get it.
What the heck IS immunotherapy? Sure, we can guess that it's when your immune system somehow fights cancer.
But it's not an address that you can plug into your GPS: I was wishing and walking in a fog with dreams and no direction.
Wow! Fifteen again! Cancer keeps us young.
And growing. Yup, my tumors are growing.
 | |||
| My sisters all grew up to be really effing clever. |
I got on the web and searched immunotherapy stuff, but most of it is written by scientists for scientists and I panicked, and hit a mental roadblock. I just didn't get it. PD-L1 ligands, monoclonal antibodies, CTLA-4, G2 DNA, antiangiogenics. . . Eek!
So then I did what all savvy girls do. . . I called my big sisters. I told them that I didn't want web links, I needed them to figure out the basics for me and to put it all into really simple terms so that I could understand it all.
So then I did what all savvy girls do. . . I called my big sisters. I told them that I didn't want web links, I needed them to figure out the basics for me and to put it all into really simple terms so that I could understand it all.
Love those sisters! In no time flat they got me through the basics of immunotherapy, and once I got my basics down and my self-confidence back, my learning curve surged up, and I could begin research on various immunotherapy types, and drugs, and their bio effects.
It's like a HUGE University, where every building is for a different health issue. The National Cancer Institute is one group/building there, and I think there is also a National AIDS Institute, etc.
Anyway, this huge facility, run by the USA Federal Government, is in charge of all USA clinical research trials. If your research on mice went well and you want to test it on humans, you HAVE to go through NIH. Trials on humans go through a few Phases, and after success on all 4 or 5 phases the Food and Drug Admin (FDA) will approve the drug, and then doctors can prescribe it.
NIH is "Clinical Trial Central." Ta-Da! And less than 2 hours' drive from my house!
 |
| Road sign at NIH facility. . . I hope they aren't all quacks! |
 |
| Lofty view from NIH clinic |
But at NIH, the central authorizing agency of every friggin' trial in the USA, they'll only discuss trials that they are doing at their own hospital, and won't discuss the other dozens of trials available nationwide that might be more suitable to my particular needs.
So if you go in and say "Oh my goodness you guys approve any and all clinical trials for cancer patients, and I really was hoping for blah and blah blah" your request will fall on deaf ears.
Like my own hospital, if they're not offering it, they're not offering it. Period. On your own.
 |
| It's all new, but CAN be understandable |
So this is how I worked it:
I contacted EmergingMed (private USA company that matches clinical trials with patients, with no cost to patient). They matched me with 17 possible clinical trials in my area.
I researched every drug listed on all 17 clinical trials (YouTube, cancer.gov, NIH Dictionary) and put them on my own personal drug list in alpha order. By the time I had done THAT, I knew what most of these drugs were or did, but I didn't understand all of them.
 |
| NIH searches cars, bodies, purses |
By the time we left, I knew what we needed to know.
I have a "dream cocktail" of immunotherapy drugs.
By prescription, they are not available for ovarian cancer, although they are FDA approved for other cancers.
Some of the cool ones are available as clinical trials, but you're also not allowed to add other meds when you're on a clinical trial. So my cocktail is possible, but can't be met. Yet.
While we were walking out of a day-long meeting with NIH people, we met a woman who was just about to start her clinical trial, HuMax IL-8 (an immunotherapy). Turns out we have the same cancer (low grade ovarian is very rare). Her treatment was on my list of questions but somehow we missed it. In turn, this lady had never heard of the clinical trail that was presented to me as the only low-grade ovarian cancer immunotherapy available. Hmmm. . . Fishy?
I didn't get my ideal immunotherapy cocktail. We'll probably sign up for the clinical trial that NIH offered but we will continue to shop around fairly aggressively until we find the right treatment match.
I'll actually fight for that, if my kids and hubby lighten up the load a little so I CAN research and do that. Or, my entire life might be lost to picking-up and laundry. And honestly I don't think I'd be the first woman to die for that reason.
Perhaps, in the meantime, a strawberry daiquiri cocktail will suffice. . .
Here's me, after the NIH day, at the BEST Thai Restaurant nationwide, Bangkok Gardens in Bethesda. NO atmosphere, great service, but every single hint of flavor was more perfect than you could hope for. And every flavor balance was in tune. It was the oral equivalent of the best orchestra you've ever heard.
 | |||
