Another New Year: A Gift and a Challenge

There is not a great deal of news on the health front. I continue to walk the Lynparza path. I continue to manage the side effects to a degree that makes a reasonable existence possible. I still manage lots of GI, some fatigue (but definitely less) and many, many emotional challenges. But I made it this far. Someone recently compared my physical appearance to last year as better “by far.” I am in a period of improvement, instead of decline. I have been given the gift of a temporary reprieve of sorts.

This October, I will beat the official odds, if I make it. It will be the three-year anniversary from diagnosis of metastasis. Cancer.gov records the average survival of my disease at about 36 months. Yet, I’m reminded that I had the mets long before. For months before, I had been sharing my concern over that rash in my skin. So, in many ways, I’m already beating the odds.

My life is so very different! We are mostly living out of the RV. We come to the four walled home for doctor visits and business. I know we’ll have to Swedish Death Clean that place — I’m not looking forward to it.

RV living is different than I expected: I imagined that we’d move frequently, but that’s not how it turned out. We’re needed, so we’ve chosen an extended stay location near family. We spend the winter south and this year, the summer will see us in new extended locations, if all is well. We will travel, if nothing changes. We will explore the Southwest a bit this winter, and even cruise the British Isles this summer, if I continue on this path. Cruising is an ideal travel mode for the less healthy. You can control your activity level. You can choose what to do and to some degree, when. You have control over your diet. But I also have the insurance, just in case. No sense in losing all that money.

There are small adjustments to the life I had before: I’m learning that I have to excuse myself and isolate myself following a meal. So I’ll be able to do that. I need to nap often, so I should be able to manage activities like that. I’m looking forward to sharing my adventure with hubby, as we visit locations we have hoped to see, all while someone takes care of us.

Marcus Aurelius

Emotionally, it’s odd. Note the number of “if’s” in this story, when talking about the future. I can’t depend on that future, but life solely in the present is impractical. You have to plan some things. And my mood improves with something to look forward to. So we imagine the worst and hope for the best. I even have another trip in mind, if I am so fortunate. But, eventually, this run will end. And we will need to make new choices and different, more focused plans.

But the idea that I don’t have that much time, probably, changes a person’s perspective so fundamentally. I recommend you try to imagine that you don’t know how long you have. Ok, that’s all of us, but we make some assumptions: we should have years, and often, decades, unless tragedy strikes. Well, tragedy struck me. So now, I think days, weeks, months — less confidently in years. And that is if I think about it at all. I really try not to. I just read a New York New York Times opinion about a fellow traveler who realized that cancer forces you into the Stoic ideal: life in the present.

Thing is, I’m definitely not a Stoic. Marcus Aurelius would be disdainful, truly. I’m still fighting and clawing for the rocks and branches on my slippery slope. I still remember life before mets, and I want that back, in some ways. At least, I want that gal back. I don’t mind the physical changes: the hair, nails, joint aches — these might have happened with age. I miss being engaged and lively. I miss not being focused on me all the time. I miss walking confidently in the world, not hearing every cough and sniffle, worried about catching my death — literally. I’m not smiling back at Death at all. I’m raging, quietly.

There’s a gift in all of this, I’m sure. Let’s hope I figure out what it is. I know, Marcus has an answer:

When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love. 

Yeah, yeah...ok. I do, mostly.

For those of you who’ve noticed, I’m not on Facebook often anymore: fear not. You can still reach me here, by gmail, or on Twitter (for now — they’re next) @josies. I also have a presence on counter.social — social media as it was intended to be. I may come back to Facebook in a reduced capacity; one that will deny them the opportunity to mine so much data; one that will make clear to advertisers that I’m boycotting. I do miss my mets sisters; their support was so vital. But I’m still here.

Surviving Pinktober and Life

Surviving Pinktober

Here we are, some 30 days later. We survived Pinktober. 

In terms of awareness for metastatic breast cancer, I think we are making strides. Susan G. Komen upped their ante, giving more for Metastatic Breast Cancer research. I saw multiple fundraisers for my favorites, like METAvivor and others. I feel like my mets sisters and I are making strides in making the point: you will never conquer cancer until you conquer metastatic cancers. Stage IV needs more.

And more happy news: I did not get one single “Check your boobies” or “Put a heart on your timeline” message the entire month. Ok, the last one was September 28, but still! Good job, everyone! Thanks for showing your love for me and the sisters.

My Update: No Reuptake!

So, my own update: in a twist I have barely adjusted to, I’m doing…well. 

I know, right? No, I’m not cured, and I never will be. I’m not really even No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD) for bones yet. But my PET scan showed some really amazing findings. 

I’ve become adept at reading findings. I can speak the speak decently well. Yet, the radiologist who wrote these seems to write especially obtuse findings. All findings are obtuse to lay people, but this one seems to contain double…positives. For instance:

There is interim significant decrease to normalization of the previously demonstrated diffuse hyper metabolism throughout the axial and proximal appendicular osseous structures, correlated with heterogenous osteoblastic disease consistent with diffuse osseous metastases. 

(The interpretation, as best I am able: the uptake to my bones is significantly decreased.) 

She goes on:

There has been interval resolution of hyper metabolic soft tissue nodules along the anterior chest wall in comparison to prior PET/CT. 

(Now this is really good, because I still feel areas of concern: my chest wall is resolved. Hooray for the radiation!)

And

The previously described hepatic lesions, best appreciated on the MRI dated January 22, 2018, are essentially inconspicuous relative to expected heterogeneity of background liver uptake. 

(The lesions on my liver are disappearing and nearly gone compared to the last one.)

So the report boils down to this: a really good response, with some remaining mets to my bones. It’s like a miracle, except it’s medical science.

To be clear: I’m not fully NED or NEAD yet. I can still see them in my bones. I can still see a few spots on my liver — boy, was that liver much worse than I realized. I once again dodged a bullet. I may have more time than the statistics would suggest.

I’m not used to this. I’m not used to being the one who gets good news. I’m used to being the one who weeps at home with hubby and then puts a brave face on for others. Since I began the path of recurrence, I have received one load of bad news after another. I’d think I was cancer free, only to learn I was metastatic. I would think I was getting better, only to find another structure that was affected. I have been through moments where I thought body systems were shutting down; I’ve been through tremendous pain, malaise, nausea and GI, a flu like you’ve never felt before — and even the pain from adjusting to this medication, which I still have to take cautiously. 

But dayum, it’s working! Thank God I didn’t quit as I thought I would.

To what do I owe this? Radiation gave me a boost, for sure. I’m taking the following: Lynparza 150s, twice a day (half the former dose), along with an over the counter drug called Pyridium to avoid that extra pain. I’m also taking a completely different formulation of my thyroid meds, with much more faster-acting T3 and much less T4 — a move which seems to have addressed that obstacle that I’ve written about: that the thyroid meds seem to encourage the cancer. I’m also taking a daily hemp-based CBD supplement when I’m in Michigan or wherever it’s legal. 

And the other thing: I feel well. Not perfect; I still nap nearly every day. I can’t manage a long walk. I still have to juggle, um, GI and urinary discomfort. I can, however, enjoy life again. It's been so long, I had forgotten how it feels. And, the hardest part to adjust to, I can stand down a bit. I feel like I can stop waiting for the other shoe to fall. 

So. Now What?

We in the community know that this good situation will eventually end. The cancer will overcome this defense. It could happen in a month, but the good news is that it could even be one, five or even 10 years. And they may not be 10 years of misery so much as impairment. And I will still have scans and pokes and big pills to swallow daily for the rest of whatever time I am permitted.

I can’t tell you how blessed and grateful I feel. Medical science is amazing. I've been given a gift.

Let me thank God and you all for your love and support. I wouldn't be here without it.

It's Pinktober Again!

Oh, goodie, It's October. What a colorful month! I love the reds, oranges and yellows of this season, but I am wary of the pink.

The pink is for Breast Cancer Awareness. October is Breast Cancer Awareness month. I very much appreciate anyone who walked for me, raised funds, and who've given me a host of pink swag. It means you love me, and I feel exactly the same about you all.

The pink ribbon is well-known for representing the fight against breast cancer, but many stage 4 breast cancer patients feel that pink does not encapsulate their experience. Metastatic breast cancer may start in the breast, but its spread to vital organs makes the disease fatal. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast. -- https://www.metavivor.org/about-us/our-story/

But the pink is out of control! From its inception in 1992 to encourage early detection with mammograms, the infamous pink ribbon morphed into an avalanche of craziness. Pink latrines. Sexually suggestive high school football games (Save the Tatas.) Sexually suggestive Ts and active wear, endless parades of Messenger posts asking me to post a heart for the non-existent breast cancer prevention. Maybe worst of all: Corporations whose fundamental mission also causes deadly cancers, paint
their equipment pink -- the height of hypocrisy.

There's money in all of this. Some organizations raise and spend billions. There's a huge problem: until recently, most funds weren't spent for research on the killer: metastatic breast cancer. It has been spent instead on programs designed to get women to get their mammograms.

As my favorite organization, METAvivor rightly points out, cancer that never leaves the breast doesn't kill. Metastatic cancers of all types kill, by compromising vital systems. METAvivor notes:

Sobering statistics from METAvivor.org

"...100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.
Despite these realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die."

However, the tide is turning. After receiving much criticism, the Susan G. Komen foundation is dedicating $26 million to metastatic research and support. It's a start. 

There are other worthy organizations:

The Metastatic Breast Cancer supports metastatics and caregivers. http://mbcn.org/

Living Beyond Breast Cancer https://www.lbbc.org/

If you support breast cancer this month, spend your money wisely and in a way that helps us most. 

Struggling with Her MBC Voice: Olivia Newton-John

It's funny how folks struggle to understand the unique dimensions of Metastatic Breast Cancer.  Recently, another breast cancer story marched across the world stage: Olivia Newton-John has returned to treatment for  breast cancer. But once again, poor reporting ranged on the edge of ethical reporting.  Here is what I have posted on social media:

For everyone offering thoughts and prayers for Olivia Newton-John based on the highly inaccurate US media reports, let me elucidate:

We can always hope for miracles but the way her announcement has been reported in the media is very, dangerously misleading. Those who have her disease are angry at the misinformation and poor reporting on this.

This isn't the third time she's "battling" cancer. She has Stage IV breast cancer and it has progressed again. She has chosen to limit treatment and concentrate on wellness.

...However, 30 to 40% of those who get breast cancer eventually move on to its metastatic form. No one yet knows who or why.  They don't even know how many of us there are, because there is a criminal lack of research in this area.

So, barring getting hit by a truck, those with metastatic cancer know that they are dying of cancer. Treatment isn't curative, it delays the inevitable.

ONJ has known this for years. Moreover she's been in treatment all of this time, and her treatment is probably as difficult as it is for all of us -- slow torture isn't inaccurate.

That Olivia has chosen not to pursue certain medical treatments, means that she is choosing to move on.

There is no miracle yet. There is no cure for metastatic breast cancer.
Please pray for ease, peace and comfort. She knows very well what comes next as we all do....

Here are practical things that can put your thoughts and prayers in action.

1. Learn the facts about breast cancer at metavivor.org/awareness

2. Donate to one of the funds listed above.

3. Think about how you talk about metastatic cancer in general. The folks who are dealing with this have a road that you cannot imagine. Those treatments are often brutal. But they can extend life by years. Decades, even. They really have no hope  for recovery, they hope for time; for effective treatment and relative comfort. For lessening of pain, and for health care that they can rely upon.

4. Fight for healthcare justice.  Right now every one of my sisters is dealing with being denied pain meds (cannabis and opioids are vital) and worrying about their health insurance. The injustice chokes us. Today's political climate was literally the last thing they needed in many cases -- I even know people whose lives have ended too soon as a direct result of the current political situation.

5. Avoid donating money to the pinkwashing campaigns where most of the funds go into awareness programs that accomplish little....

These are the things you can do for us. Thank you.

The Gift of Normal

The view from the Alpine Visitor's Center at 11,500 feet, high up on US 34, Trail Ridge Road, Rocky Mountain National Park. The dirt road I drove to get there is to the left, a family of elk sits below.

It is easy to lose perspective with this disease. I, for instance, have forgotten what it feels like to be normal. For me, that meant a dancing, singing, traveling, working-two-jobs-in-one type of hardworking gal — that’s who I used to be. My family called me the Energizer Bunny. But that gal got left behind almost two years ago, next month.

Since I began the Stage IV experience, one treatment after another has robbed me of that energy. Sometimes, I felt like I was moving through jello. Other times, I felt like I would never fully wake up again. In this current treatment, I feel great on the couch but unable to walk up the stairs without depleting the little store of energy left in my remaining blood cells. Throughout all, I have become the nap queen. My thyroid meds have me all over the map, too, greatly contributing to the malaise.

Because of the chronic anemia, my oncologist moved me off the Lynparza for a few weeks until I cleared a few scans and labs. My bloodwork gradually improved, and I could stand up without bracing myself again. I was cleared to start again.

Because our world has been so crazy, hubby and I decided to make a trip to see a place that is dear to us: Big Thompson Canyon and Rocky Mountain National Park. In many ways, this area is our geographic center. We've come here since our youth. US 34 had had road work done, closing the whole beautiful canyon for months. It was recently reopened with new bridges and alignments. The announcement served as our call to return. So I took one more week off meds to drive out there and back. We flew the daughter in as well, just for a few days. The trip was a blessing in more than one way. 

It was great to see all of those sites. I certainly can’t hike the backcountry anymore, but I can drive the steep terrain with ease, using the same skill I honed as a young woman. And by the end of the week, I remembered what it was like to feel good. My spirit soared. I was with the family I loved; I felt wonderful. The feeling, so strange to me of late, grounded me. It was my gift: a week of normal. Normal eating, normal energy, normal joy in wonderful things. I began to plan my future with hope again. 

Meanwhile, Back on Earth

The week in the high country did my lungs some good: my groundglass opacities have cleared. My endoscopy showed inflammation but no infection. My CT scan for the lungs reconfirmed other findings; nothing new. Nothing new is good. 

But I am back on the Lynparza, at a lower dose. I do feel better on this dose, but I expect I’m going to return to anemia over time. I am still taking naps. I still have GI and U-tract issues, at a more manageable level. Importantly, my urologist and I have a plan to stay on top of developing issues, and I can treat them as they happen; I don’t have to wait.

I have an unexpected ally in my battle for the thyroid. As you recall, early studies suggest that one thyroid replacement hormone, known as T4 (Synthroid, Levoxyl) is encouraging my cancer cells to grow, and possibly blocking treatments by locking into the same receptors and giving those cells a boost instead of a kick in the rear. There is another version of the hormone that works similarly but doesn’t act that way with the cells. It’s called T3 (Cytomel, Liothyronine). However T3 alone has some risks, and it is usually prescribed only for brief periods when thyroids are scanned. But my endo is seeing more than one patient taking these “monoclonal antibody” therapies, and we are all struggling with our endocrine system. (Hey, we get to live long enough to struggle; that's something right there.) She believes that my wild thyroid status swings (from very hypothyroid to very hyperthyroid) will be improved by taking more T3 as well. We have crafted an entirely different combination that favors more T3 (a shorter acting agent) and less T4.

It is entirely possible that my system will be able to fight more cancer on the lower dose now. I’m excited at that possibility, even if I can’t find the energy to dance about it. Stay tuned.

The Balance Between Good and Evil

The good news...the red circles shows
more reduction in my Antigens

I have had a few data points since the last update. First, we did more antigens. Antigens 15-34 and 27-29 measure breast cancer tumor proteins in my blood. I feel the charts say it all. They went down by half again! I think we can definitely hang that drop on the Lynparza. That’s great news.

Then I got the CT scan.

Well, it wasn’t bad news. The liver seems to be improving, for sure. Many tumors smaller, nothing bigger, nothing new. Ok, I’ll take that.

My chest looks much better post-radiation.

Bones, on the other hand...well, those bones.

There is diffuse sclerosis of the osseous structures which is worsened from prior examinations. Additionally, a few of the more focal appearing sclerotic metastases appear mildly increased in size and density from prior examination. This is a nonspecific finding by CT and could relate to treatment related changes/partial healing response. Osseous progression of disease is difficult to definitively exclude.

Translation: It looks like there are more numerous and more intense bone mets, but it's still hard for them to decide if they look active because they are coming or going.

The rest was unchanged or normal. But there was another troubling finding:

There is new subtle diffuse groundglass opacity throughout the lungs which may relate to a mild acute infectious/inflammatory process including possible drug reaction.

Translation: My lungs may be developing a bit of inflammation due
to the drug, most likely. And yes, I have had symptoms, including an odd spasmodic cough.

Well, that’s not great news. And it came just as I was ready to give up. I struggle so much with Lynparza. I had had yet another bout of painful cystitis -- I have one every other day -- and I have a version of chronic anemia that is odd and annoying. I was tired just walking up the stairs, which may be from the drug as well. There were other symptoms. I was a bit afraid to go out.

My onc completely understood. She knows that this is taking its toll. She's concerned about how I'm feeling. Not only that, but she floored me by telling me that Astra-Zeneca is calling to find out how I'm doing as well. Imagine that, so-called Big Pharma, taking a somewhat personal interest in my success. How can I not give it another go?

Life is a balance, like the
balancing rocks along
the roadsides of Northern Ontario.

The doctor wanted me to take a break for testing, and I was more than happy to. I’ve now been off for two weeks, and I am beginning to recover. (I still want to nap today!) I have seen my urologist: everything is as it should be, so we just have to manage the symptoms. We're trying some different strategies. In some respects, the drug is aggravating something I would deal with when I'm 80; it's making it all happen now due to hormone changes. I have to figure out what I would have done then, now.

I will see a lung specialist for the ground glass, and a gastro doctor, just to see if the chronic tightness in my tummy when I eat can be improved easily. I’m already breathing better, so I think we can attribute the appearance of my lungs to treatment. I admit I'm able to eat better, so it's still the drug. But let's see, just in case.

We weigh costs and benefits, the good with the bad. No treatment has made much progress in over a year. I think we can manage the bad of this treatment, at least I’m going to keep trying, on a doctor-approved lower dose. I'm also going to go easy on me, plan some fun things to do, some travel, and live the rest of my life. The last quarter wasn't great, and I want to catch up with life again.

Cancer Cures, Hope and Ethical Reporting

A Real Cure? Really?

I think I’ve joined all of the metastatic breast cancer communities I can find. They are wonderful, so helpful and full of support and information. The sisters help so much -- we share wisdom and tears every day. But we are a jaded lot! We see people posting baking soda cures and miracle clinics in Germany, and we hop on them pretty fast. We guard our vulnerability to false hope. There are many evil folks making money on false hope. Last week's news was different; yet events still provided a serious challenge to my well-trained sense of journalistic ethics. 

Ages ago, I graduated from Michigan State University with a bachelor's degree in journalism, and the skills I learned never failed me. Among the great classes I took: how to spot a fake research story, also known as Advanced Reporting. “Be skeptical,” they taught me; “ask if the sample is large enough, if the study is controlled by an untreated group, and most importantly: follow the money. Who paid for the study, and who profits by it? If it looks too good to be true, the money will tell you.” That tutelage really kicked in last week.

The Miracle Cure

 T-cell Therapy Process
By Simon Caulton - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=29559885

Many of you saw the news story: a woman has been “cured’ of breast cancer through T-cell immunotherapy. Thank you all for not immediately copying me on it. The National Institute of Health (NIH) released the story, and brought our hero, Judy Perkins, in front of the public, causing a huge ripple through our various communities.

Here are several versions of her story; note how different each are:

CBS News:

https://www.cbsnews.com/video/how-personalized-immunotherapy-saved-one-woman-from-cancer/

NPR.org:

https://www.npr.org/sections/health-shots/2018/06/04/615673436/therapy-made-from-patients-immune-system-shows-promise-for-advanced-breast-cance

The BBC:

https://www.bbc.com/news/health-44338276

The National Institute of Health press release:

https://www.cancer.gov/news-events/press-releases/2018/immunotherapy-targets-breast-cancer-case-report 

The Guardian:

https://www.theguardian.com/commentisfree/2018/jun/06/cancer-cure-immunotherapy

One of the better blogposts:

https://www.linkedin.com/pulse/metastatic-breast-cancer-apparent-triumph-thoughts-from-o-brien/?published=t

Ok, now here’s a quiz for you: 

• What is the current success rate for this treatment?
• What is the sample size of the study?
• How does it work?
• What are the risks?
• Who benefits from this story going public? Where’s the money?
• Knowing me, which is my favorite story, journalistically speaking?

First, Some Observations

Judy Perkins is a pioneer and we are proud of her contribution to saving our lives. We are so happy for her. But, with my finger on the pulse of our mood, I noted how this affected everyone. The old warhorses like myself pumped out a few cautions, but this news story changed us. It gave us hope. I am struck at how much and how quickly it affected some of us. This is one of our forum sisters:

I really need to vent. I’ve been telling people about the exciting and hopeful results of Judy Perkins’s trial, and so often the listener tries to burst my bubble. “Yeah, but we’re so many years away from that being a reliable treatment...blah blah blah.” People can be a great comfort, but I’m so disgusted with people lately. It’s the FIRST time I’ve had HOPE in YEARS. It’s a great feeling, and I don’t want anyone to take that away!!

I have to admit this: I’m one of the skeptics. I reminded the sisters that we’ve seen this before, with the vaccines that didn’t work, and the targeted therapies with big side effects and low response rates. This is just a case study and a small sample. I explained that this is the therapy everyone is struggling with: solid tumors are hard to address with T cells in the body systems. I reminded my sisters that we can’t call anything cured until about a decade out. Cancer is a sneaky thief that knows how to hide out for so very long, that two or three years is a very short time to trumpet success. To her credit, Judy herself says the same; she did not call herself cured. It was the director of the NIH who used the term before Congress.

We are very sensitive about the word “cure.” There are no known cures yet. Time tells us cancer is cured. However, they do use the term for other cancers with this therapy.

Quiz Answers

In the letter published in Nature Medicine, we learn that Judy is the only one of three patients to survive. One of our sisters died from the disease, without adequate response, and one developed a staph infection. Judy tells us the path wasn’t simple either, from her posts over the years. Her situation was dire, but the response was quick. She reports being on no therapy right now, which is very much Mets Nirvana: being normal again, even for a time.

Right now, T-cell therapy is FDA approved only for certain leukemias and soft tumor cancers like lymphoma. The price tag is staggering: about $300,000 to $500,000 if it works. (This is considered a fair price, given the expense of continued treatment. They are probably right.) The process involves removing a sizable tumor, looking for successful white blood cells (Tumor Infiltrating Lymphocytes or TILs) that attacked the tumor, sequencing their genes (much like my genomic study) and growing billions of the successful cells, returning them to the body to use its normal systems to fight back.

You can see where this would work for soft cancers; they are already in the blood and lymph systems, so they are easy to find. But is there really hope for the more difficult cancers?

My favorite article is the Guardian, as well as Katherine O’Brien’s blog post on LinkedIn, because they offer us a realistic viewpoint; one with greater integrity from an ethical standpoint. There are many who do not respond across all cancers right now; the response rate over all cancers is around 15%, but the sample is so small there are no conclusions to draw yet. There may be a risk of a life-threatening immune response from the body called Cytokine Release Syndrome (CRS). My CRS-like response to Kadcyla was the impetus for obtaining a second opinion from MD Anderson. My second opinion oncologist said CRS is much, much worse -- and I thought I was dying, so I can only imagine how much worse CRS is. One of my sisters reports that her cerebellum was affected by an earlier study, and she is permanently disabled. This is an advance but it’s fairly tricky, no matter how much hope we gather from this story.

So, why did they publish this story now? Judy does truly represent a breakthrough, for one. She is a first. For another, the National Cancer Institute and the National Institute of Health need better funding from Congress. Having a direction for treatment and real hope for advancement, gives Congress impetus to fund more. I truly hope they do. Please be sure to encourage your congress member to fund metastatic research.

Historical funding for NCI. Source, American Society for Clinical Oncology, CCA Report 2018 https://www.asco.org/sites/new-www.asco.org/files/content-files/research-and-progress/documents/CCA-2018-Report.pdf 

What about Hope?

Despite my misgivings, I, too, have been changed by Judy’s story. Maybe there is hope. Maybe I’m not dying quite so quickly as my deepest fear suggests. Most importantly, maybe there is hope that I’m not going to be in misery for the rest of my days, trying to survive instead of live. 

I’m almost surprised that I feel that way, given my realistic point of view on life lately. I may even explore joining the next phase trial. Meanwhile, I’m no longer posting cautions about this study. We deserve some hope.  

Markers Go Down, Myths Go Up!

Update

My first real data since radiation and Lynparza is in and it is remarkable. The tumor markers in my blood, known as Cancer Antigens (CA) 15-3 and 27-29 are steeply down. To fight cancer, we produce antigens, and these two have been  identified with fighting breast cancer. The greater the number, the greater the concern. My last set before this, as you can see, seemed dire, with results near or above 7000s. Of course, normal levels are under 35 and 32, and mine are still in the 800s, but the tumor markers in my blood have gone down by the thousands. 

My historical tumor markers for  CA 27-29

Is this the radiation? Is the Lynparza working? Is it the unreliability of the test I have been warned against in every previous draw? I’m not really sure, but I am happy to see this; it’s the first decline in my tumor markers since I received my stage IV diagnosis.  

The Lynparza is still a bit tough, but some of the difficulty has evened out. I still have an ever-present tendency toward cystitis and UTIs, and a strong and rather disgusting taste of metal about three hours post-dosage. Because I’m tracking these things, I know that the pH of my, um, various fluids becomes rather acidic at that point, until I am able to flush or change it. (Ironically, hydration is a poor solution to the problem — water tastes like battery acid.) Avoiding UTIs is like balancing on a pH tightrope, so I now have prophylactic antibiotics and Cystex, which help.

My historical tumor markers for  CA 15-3

My bloodwork shows I am clearly and chronically anemic, although my numbers seem to have evened out. I also end up taking a nap at least once a day. But this fatigue is a little different: while I feel fine and even energetic just sitting, I wind myself walking up stairs. My red blood cells can’t seem to get oxygen to recover from effort. I'm not as tired as I am unable to do things.

Looking for Support  

I had joined a support group for those taking my drug, but I left it when it was suggested that we shouldn’t post negative outcomes. Apparently, some folks are really enjoying success, and they don’t want to hear from the nabobs of negativity (Spiro Agnew reference for you history buffs.) I’m just not one of them, or at least one with an easier path. I am not wholly alone, but the cheerleaders of the group will brook no negativity. I rely on support groups for learning and camaraderie, so I left. I’ve been invited back, but I haven’t rejoined as of yet. I’m just not sure I want to criticized for honesty by the passive-aggressive. I have a few other forums to fall back on.

I did call Astra-Zeneca, as I mentioned, and learned a bit from them. Their pharmacist was right: some of the symptoms got easier about six weeks in. I’m not going to be as critical of “big Pharma” as I used to be; they have been very helpful overcoming some of the difficulty with this drug. I will still be critical of the hedge fund owners that are jacking up prices. My drug is in the middle of the new therapies: only $13,000 a month. But hey, insurance covers it, once my out of pocket is reached. And AZ may help with that. I am grateful.

Mythbusting for Cancer

That brings me to my subject today: cancer myths. I see so very much quackery out there. And the stuff lands on my Facebook timeline regularly. Someone reposted the “there’s a cure for cancer but Big Pharma won't tell you to make money” nonsense again. Other times, I see miracle cures through diet (no sugar, no phytoestrogens, take baking soda…no asparagus? I love asparagus!) Although I didn’t challenge the latest Big Pharma post directly, please let me emphasize that most of this crap is pure drivel. In a sort of rebuttal, I posted this wonderful article:

http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/

I like the article because it links to the science behind each debunking. No, diets don’t cure cancer, and there is only a weak relationship to prevention (like alcohol and breast cancer.) Big Pharma isn’t sitting on some miracle cure for cancer in order to make money. Cancer can be prevented if you get a mammogram. (You aren’t preventing — you are detecting early, which may or may not help you survive.) I see these almost every day on my Facebook timeline or worse, in Messenger. My heart hurts from the number of good people I know who fall for it.

Interestingly, one of my Facebook friends brought up the positive outcomes she’s had with a no-sugar diet. The blogpost specifically refutes that outcome, although I’m sure eating well helped her grapple whatever cancer she fought. But the words “a tumor is sugar” is a gross misstatement of what a tumor is. A cancer tumor is a grouping of cells, the descendants of perhaps one evil stem cell, that have (usually set of ) specific genetic mutations in their DNA, causing them not to die as they should, but instead turn into voracious, rapacious killers, replicating and demanding resources, converting others to their evil ways. There are between 100 and 200 human cancers out there, depending on whether you are in the US or the UK, and their different definitions. There is no one solution for any of them, sometimes no one solution for even one of them. 

And as proof that Big Pharma doesn’t sit on cancer cures, there is one that can be cured, potentially. Childhood leukemia, considered a soft tissue cancer, has a new treatment the holds the potential of a real “cure.” There is also risk for a major set of side effect: reactions that are nearly as lethal. There is an ironic twist, however; it costs nearly $500,000. Now, that’s how you turn a profit on a drug! (Note: this therapy, called CART-T cell, is a long way off for solid tumors like breast cancer, if we can make it work at all.)

As a reminder, I expect no cure for my metastatic cancer, but even in earlier stages, “cure” is a misleading outcome. Regardless of any treatment, at least prior to the leukemia cure, any of us who develop an early stage cancer of any kind faced a 30 to 40% chance of developing metastasis, sometimes years or (in my case) decades later. A large portion of metastatic cancers are detected first at this stage as well. We don’t have a good handle on the numbers and the outcomes, but we know that 609,640 US residents die each year — and of those, they die from complications of the cancer that kills: metastatic cancers. Read more: https://seer.cancer.gov/statfacts/

This is especially true of solid tumor cancers like breast, colon and so on. No one has a handle on a specific why, partly because there are 200 cancers that may do this awful, metastatic deed, and each behaves so very differently. And once you are metastatic, they stop trying to “cure.” The doctors move, instead, into survival mode, seeking to extend the patient’s life with treatments that will reduce the cancer and tame it into submission for a time. New therapies that target the genetic mutation in the cell are becoming commonplace. Time will tell (about 10 years, to eliminate short term bias) if they help.

I want to make it clear that cancer treatment is no longer just nausea, chemotherapy and hair loss. It might also be pills, a series of weird side effects (SEs for short) like cystitis, hand-foot syndrome, fatigue, anemia and vulnerability to pathogens. We may also extend our time considerably — or not. Nor is the extension a walk in the woods. It all sucks so far.

We are making progress, but I honestly wish we had Star Trek technology. If we could transport, we could also transport cancer cells into oblivion, cell by cell. No more broad brush strokes that affect everything. 

Now that would be a real cure.