Thursday, May 10, 2018

Lynparza -- Still Parsing!

It was quite a journey, this new medication! If it works (still no objective data) it will be so worth it, but it was a struggle reaching this point.

After about a week on the first round, I developed a fairly painful UTI, if you recall. Then my numbers took a nosedive: white counts down, red counts down, but especially a hemoglobin below 9.0, when the average is 11.0 to 13.0.  The good news was that my liver enzymes and calcium were both looking better. Calcium blood levels are a sign of cancer activity; I hadn't seen anything in the normal range for years.  After I got my UTI treated, and because my hemoglobin was so low, my doctor said "take a break." It took 2.5 weeks to recover sufficiently.

Two imposing walls of lava scorched stone line either side of Santa Elena Canyon. The Rio Grande reflects their image into its placid, green waters.
Santa Elena Canyon on the Rio Grande,
Big Bend National Park
Well, that was just fine, because I managed a trip without meds to Big Bend National Park. Ah-mazing, and the joy of being there with nature and beauty is still with me. I guess all of my trips to wonderful places create a space in my heart, and I treasure them in memory as much as I love being there.

It was hot there: 102°F. Yet somehow, I found that temperature to be fine. I couldn't hike far; I couldn't do much at all but drive or ride, but it felt comforting to be so warm, somehow. The third day was slated for a trip to Marfa, home of aliens and artists, but a haboob made the trip a bit fraught. We topped off the trip with a visit to San Antonio, but we ended up celebrating our daughter's birthday back at our Texas home, Cedar Park, enjoying Ready Player One at the Alamo Drafthouse. My appetite and energy were still a bit impaired, but all of this trip spent without major side effects. It was a mini-blessing.

As soon as I returned to taking the Lynparza, one week to be precise, the UTI hit again. In fact, for the next three weeks, I could tell you the exact location between my right kidney and everything that goes out the door from there...it was all inflamed and painful. I visited the doc but she really pushed for me to stay on; my bloodwork was within parameters. That calcium and those liver enzymes looked so promising.

But three weeks of pain had me at that point I get to so easily these days: how much of this is worthwhile and meaningful? All of my issues so far seem to point to my medications, not my cancer, as their source. I am truly miserable at times, and this was another dance with the devil. My doctor had referred me to a urologist, though, so I had to hang out. I had to keep trying with the meds.

I began to doubt that I could.

Meanwhile, my bloodwork crashed again. Just as it did, I went out for a few hours one night, and came home with something bacterial. I was supposed to be traveling again that week, but the numbers were dropping even lower, except for the hemoglobin. I was in cystitial pain constantly. I had to make a decision: risk traveling 800 miles for a very important event for someone I truly loved, or hunker and nurse my condition, waiting for the urologist. I had just a few days to cancel without costing huge amounts for my hosts (I hope) and myself.

I gave up trying to travel. Instead, I connected via video during the reception. That helped me feel less piteous. But I was determined, as well. I could not live like this, long term. First, I began a hydration regimen: over 100 ounces a day. That wasn't very comfortable either, and definitely not conducive to travel.

Nerd that I am, I began to measure everything. I ordered a home testing kit. I watched my pH, and measured the nitrites (a sign of bacterial infections) and the leukocytes. Sure enough, I was off-the-chart acidic, with white blood cells present constantly. No wonder I was in pain. I took readings about four times a day, and recorded them with photos for the doctor. Yes, I am a nerd. Data rules.

I reached out to forum sisters: had you had this problem? Not too many, a rumor of one or two. No great ideas for handling it, except one, by a newbie with her spiffy packet they send you: call AstraZeneca. I began to adjust my meds on my own: instead of taking two twice a day, I took one every four. Hydration, rinse, repeat. The adjustment meant more time spent tasting metal, but less urgency and sensitivity.

I called AstraZeneca and talked to their pharmacist. My problem wasn't a common one. Adjusting my dosing schedule was better than not taking it. And while this was an unusual result (yeay, Josie and her side effects!) he had noted that other side effects encountered initially seemed to ease off after six to eight weeks. The conversation had the effect of a pep talk with me. I kept on. Baking soda water, meds, Pantaprazole again...and I kept adjusting.

And then, just in time to see the doctor: voila! Not so sensitive or painful. Still acidic, but not as bad. Bloodwork coming back up, at least a bit. (Yes, there was a correlation between bloodwork and pain. I have no idea why.)

Here's where the urologist was awesome: she looked at my data (along with an ultrasound and other data points) to make a diagnosis. We came up with a plan, and I am overall doing better. Less cystitis (although I'm afraid it may return, deep down) but still lots of fatigue. The fatigue is odd. I feel fine until I exert myself in anyway, then I get winded. I suspect the hemoglobin could be better, so I'm working on iron intake.

I am once again feeling more like a human being. Impaired and limited, but human. I still won't go out much, I lean away from sick folks, and I still won't have much of a party life (ha!), but I am not in constant discomfort. That's good.

We will learn if it's working in June. Fingers crossed.



Friday, March 23, 2018

Parsing Lynparza, Update

I've now been on BRCA-inhibitor Lynparza for three weeks. Scans won't happen for another month or so, so I don't know if it's working. Here's what I've learned so far:

  • Energy is a little better
  • Appetite is worse, to be honest. I eat three bites and the knot in my tummy says "Full!"
  • GI is really minimal, but still a thing.
  • I had another UTI, probably medicine-induced (Stay hydrated, travellers!)
  • I have a somewhat funny metallic taste that lasts for a few hours after each dose

I have to admit that the taste one, for the rest of my life, would be a bit unfortunate. The possibility does exist that I will get to taste everything weird from now on. But it's nice not to have hand/foot battles, and I've done some walking and -- gasp! -- I even golfed indoors one day.  The UTI was a setback; they seem to be getting worse and more painful.  But it was cured quickly enough. I wish they'd prescribe prophylactic meds so I didn't have to wait. I know what I have, but they don't do that anymore.
A mountain laurel bush flowering with sweet-smelling violet flowers.
Mountain Laurel smells wonderful
The radiation worked well enough, but not completely, so far. We may still see some more improvement; I still have some healing to do. But my skin looks and feels quite promising. The skin is my visible connection to the disease; my daily reminder, so it's encouraging to see improvement.

The other issue that needed to be addressed was my thyroid medication. I'm back on traditionals. I have no idea how it's going either, but since I feel better and my hair looks ok, I'm guessing I've returned to a more normal response.  I plan to try to move toward T3 dominant treatment when I can be monitored more closely.

Things to look forward to:

  • RenFest tomorrow for a short bit
  • A trip to Big Bend National Park in spring; driving, but that's fine.
  • Wildflowers and migratory birds -- there are tons here. Added a Canyon Wren to my list.  And this lovely mountain laurel, that smells heavenly. Stop, smell and listen, folks. You never know. 

Saturday, March 3, 2018

Parsing with Lynparza

A visualization of the BRCA2 gene mutation
The BRCA2 Mutation
I have finally settled on treatments and calendars, at least mostly.  My genomics testing says that the things that are most likely to be effective are PARP inhibitors targeting the BRCA2 gene mutation that I have, and that my cancer shows as well. My doctor, however, held out for a FISH assay of the liver tumor, because the original HER test was equivocal. The FISH Assay is negative. That means I am now HER2 negative, no more doubt. 

So, what will work? The genomics study says that PARP inhibitors should. They target BRCA1 and 2 damaged cells, causing their death without reproducing. From BMC Medicine:
"Poly(ADP-ribose) polymerases (PARP) are enzymes involved in DNA-damage repair. Inhibition of PARPs is a promising strategy for targeting cancers with defective DNA-damage repair, including BRCA1 and BRCA2 mutation-associated breast and ovarian cancers." Read more at: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0425-1


The Lynparza side effects not unlike the ones I've been dealing with already (I've bolded the ones I deal with now):
  • A risk of bone marrow problems, including a form of leukemia
  • Nausea or vomiting 
  • Low number of red or white blood cells
  • Tiredness or weakness
  • Sore throat or runny nose (buying stock in Kleenex soon)
  • Diarrhea
  • Joint, muscle, and back pain
  • Headache
  • Constipation
  • Changes in the way food tastes
  • Loss of appetite
  • Mouth sores (yeay, Biotene)
  • Respiratory infections 
  • Changes in kidney function blood test
  • Low number of platelets
  • Indigestion or heartburn (Also, stock in Alka-Seltzer and Phazyme)
The ones I appear to be giving up are dry eyes, and hand-foot syndrome. This syndrome happens when your hand and feet capillaries break down with the chemo, and was becoming a bit of a concern, although I fought it off with Udderly Smooth cream. But I am likely to have some of the numerous GI issues, and I'm not crazy about the joint pain either -- I'll bet that's related to the low blood cells. I am worried about a rehash of the Kadcyla. But let's see what happens. I corresponded with one woman who had none of these but some energy problems. At four naps a day (Ok, that's a little better with better thyroid function), I can relate.

Speaking of thyroid, my TSH was recorded at a record 45 a few weeks ago (it should read 1 or 2), so I've switched meds to the old synthetic meds. It appears to be working at the moment. My numbers are heading down, thankfully.

I should be able to begin the Lynparza when the insurance company clears the way. It's two pills, twice a day, no break. I'm hoping to be starting next week, mid-week. I promised to stay in Michigan for side effects and doctor monitoring. But after that, I am Texas bound, if all goes well enough.  Hell, even if it doesn't. I can't stop living.

What scares me now? Well, aside from the usual new med anxiety, I looked at my Explanation of Benefits, currently pending with Blue Cross Blue Shield. That genomics test cost $8100.  It will be totally worth it, if this works. But if I have to foot it myself, that's the end of my savings. (Yes, I know, I still have savings. But I also still have credit card debt, so it's not a plus, really. Being chronically ill in America means you'll die poor. The end.)

Meanwhile, my study also revealed something else: I have the genetic mutation associated with Marfan Syndrome. It's autosomal dominant, and often inherited. My daughter has already paid it's awful, demanding price, but I'm worried for the rest of the family now. Even if someone doesn't develop Marfan's they may develop familial aortic dissection -- basically your main artery blows right out of your heart, like a hose out of control. That happened to my grandmother, but she was in her mid-70s...I wonder how many more of us?  Grandma, I love you, but I think you may have lost the gene lottery and passed that on.

Thursday, February 8, 2018

Ode to the Caregivers

This is Thursday of an extra long week. I’m finally getting my radiation treatments, and that’s going well. I’m making friends with my fellow travel companions on the cancer journey; with radiation oncology, you tend to see the same people everyday, so you may as well have a party while you’re there. The doc thinks I’m going to have quite the sunburn, but the chest was already red and angry; I think there’s an improvement over no treatment.

The reason the week is extra long isn’t because of radiation, however. It’s because my caregiver -- my husband -- is taking a week to get things in order down with our RV. He was worried about leaving it alone, and he was right to do so: we ended up having to have repairs done and things that needed attention right at that moment.

But my hubby has been my constant companion since I retired. He has been right by my side. Things really stepped up when the Kadcyla made me so sick. Suddenly, I was a bit helpless, and even now, I tend toward reclusiveness. He’s doing my dishes (doc orders), cleaning a bit, and even shopping sometimes for me. On the long trips, he has to do most of the driving now; I get fatigued too fast, so three or four hours is all I can do. I sleep a lot now. (Those who know me know that this is a big thing, not being able to drive. I love to drive.)

It was tough to say goodbye. He took the train down, in order to leave me the car. It was fun sharing the trip by maps and geopositioning apps. But I miss him, and there’s just no denying that. We are cuddlers (sorry hun) and we are physically close often. I cook for him, but I have much less interest in cooking for just me. I’ve been trying to comfort myself by having the foods he’s not crazy about while he’s gone. I keep busy. I can handle this just fine. He deserves to be free of responsibility -- at least, this one -- for a time. He needs respite, too.

Our caregivers are amazing people. I am lucky to have mine, and don't I know it! But I also see the toll this whole misadventure has had on him and my daughter. It’s almost as hard to be the caregiver as it is to be the patient. Yeah, I have awful days and big problems, but he has the weight of the world on his shoulders and I can see it in his eyes. The same for the kinder, although she swears she’s fine. I still know that she’s thinking about things a woman her age shouldn’t have to contemplate.

My friends (if I may) on Imgur have had a discussion about this and it really got me thinking. Someone posted, “Be strong” to a newly minted caregiver. I know every caregiver wants to be. But I posted a somewhat contrary (though not entirely) opinion, that said, to this effect: “Nah, be you. Tell me what you’re going through. I already know anyway, and I don’t want some “positivity” barrier between us. Don’t worry about talking about death and dying; about how you hate the yucky things or how frustrated you are; you don’t have to put a happy spin on things. I’d rather share the real journey, whatever it is.”

I am not dead yet gif from Monty Python and the Holy Grail.
Don’t misunderstand: I don’t think anything is to that point yet. Yes, the liver is now involved (liver biopsy next week.) As I mentioned, this is a met that can lead to...well, eventually, yes, to death. But I still think something is going to work; I know many people on my forums have liver mets and brain mets and they’re “not dead yet” as Monty Python would say. But, as some say, “sh*t’s gettin’ real.”

So every opportunity I get, I push that hubby of mine out the door. Go golfing, go to band practice, go have fun. Without me; without worrying about me. I’m fine. We’ll still have plenty to do together; there’s plenty of fun and adventure to work toward. It’s just more challenging, and you deserve a break from that.

Fellow travelers, love your caregivers today, but see if you can give them the day off. They deserve it. Caregivers, don’t treat us like china; we already know you’re suffering, too. We love you for that.

In fact, we could not love you more.

Wednesday, January 24, 2018

Woman without a Plan

I've mentioned before that one of the most frustrating things about Stage IV cancer is the inability to plan your life. Every few weeks, everything changes and what we thought we might be doing is no more. For a woman who could map out practically her whole year at work, and for a hubby who works the logistics of every step, the frustration practically suffocates us.

After a lovely few weeks alternating between cold and decent weather in Texas, we drove the long drive back to Michigan for a week of doctor appointments and procedures. We knew it might turn into a longer visit, and it has.

It began with an MRI. Remember those spots on my liver? The PET scan didn't light anything up. After consulting with the radiologist, my onc (my regular oncologist) decided to order an MRI. Again if those spots -- there were two of them -- did anything, I'd get them biopsied.

An MRI showing lots of small white spots on a black background, a faint hint of the shape of the liver throughout.
This is someone else's scan, but mine looked
similar: Lots of little dots floating in space. 
Well they didn't. They are cysts. But, unfortunately, they found "there are multiple (>15) T2 hyperintense, T1 hypointense peripherally enhancing liver lesions consistent with metastases. "

The dreaded liver mets. Crap.

We never would have seen them without worrying about those cysts. It's a damn good thing my onc is so detail focused. So what's next?

First, we're going to deal with my chest. I haven't complained about it much here, but it remains the biggest, most visible pain in my...well, chest in this case...about this cancer. Aside from my perception that it remains the focal point of all the cancer -- all of it coming from one stupid tumor that woke up -- it really causes me daily concern. Redness, minor itching, weird nerve ending issues, bleeding and necrosis, and it just won't go away!! I consulted the amazing radiation oncologist and he's going to zap them into submission. Good. While I'm doing that, I'll have another round of the Xeloda.

I am disappointed about that. I was sure that this round of Xeloda was going to show progress. Unfortunately, that doesn't appear to be the case, but it is doing something. I'd be in much worse shape without it. Apparently, it works well with radiation. So we continue for now.

I also had some bloodwork drawn, and they are going to take some previous samples from past biopsies. They are going to a genomic testing lab that will look for mutations in my genes and in my cancer. This detailed genomic testing may help identify the best treatment, one that will really work. Their motto is "data driven treatment." Be still, my beating heart! You know how I love good data.

I do have to worry whether my insurance will pay the thousands of dollars it will cost, but it will be worth it. I'll borrow money if I have to. It's been frustrating that, to this point, we don't have enough data to target the cancer properly. This may be a big step. It's the new personalized cancer treatment you read about in the news. I'm pretty geeked. 

I will still get the much littler tumors in my liver biopsied. That's data too. Again, we still suspect HER2+ cancer -- this may provide the opportunity to see it. Or not. And that will determine the next step. More biologics, the new Tyrosine Kinase Inhibitors that work but make you sick, more chemo...what? The data will tell.

So what's my prognosis? Who knows? Yes, liver mets are kind of a big deal -- another progression. But they aren't interfering much with my liver yet, and the Xeloda may knock those tumors down the way it does with my skin. If we find the right treatment, I might have lots more time. The doctor is confident that I'm not in danger at the moment from much of anything for at least a year. She doesn't expect a cure, as we all know, but stability is a strong possibility. Given that my cancer isn't causing many symptoms like the treatments do, I guess that's a win.

We don't know when I can return to Texas, or visit some other location. There's a long list. Much depends on the next treatment. Another hermitage may be in the works -- the side effects from the biologics and chemos that come next may be strong. I may not be up to being social -- something that I had been working to reestablish. 

We just can't plan anything! Argh!

Sunday, December 17, 2017

More Scans and Biopsies

I am living a torn life lately: I want to be in Texas, but I'm in two feet of snow in Michigan to see my doctor. We reviewed the latest CT scan. She has a slightly different take than I did. To me, the CT results suggest spots on the liver, and my bones are much worse. My antigens are in the 5000s. To her, she is skeptical that the spots are new or that they are even cancer -- they are the same spots we've seen before. She thinks the findings on my bones my be the xGeva making itself known.  So, she's ordered a PET scan. There's nothing like data to help us make the right decisions.
Festive white lights in multitudes, wrapped around a huge old Texas pin oak tree.
Merry Christmas from Texas, y'all!

If the spots on my liver light up, I have liver mets. If not, no concern. We soldier on. But if they are, in her mind, they need to be biopsied in the same way my skin was. The bones are less concerning than the liver: the liver mets will kill. The bones will just be a big pain in the....well, hips and other locations. So, she wonders if the liver mets -- if that's what they are -- are HER2+.

Human Epithelial Growth Receptor 2. That's what they call it. It's one of the factors that oncologists consider when determine how to treat the cancer. It is a "tyrosine kinase receptor." Sometimes, the cancer gets this receptor a little over excited, and it expresses too much, causing more bad cells to grow. Treating it often kills the cancer nearly completely (except for the hidden cells, apparently). I responded well for quite some time to a treatment focused on HER2+ cancers.

But the latest round of biopsies showed my skin to be HER2-. So we've been treating that, with "mixed" success. (See above.)

And here is where my own oncologist is just superior: she thinks I'm still fighting both. If I am, that would explain why I progress on one treatment or the other. Maybe I need to be fighting both at the same time.

That's what I've been saying all along.

And HER2+ cancers are really sensitive to treatment.  I damn near defeated them; leaving the HER2- stuff behind. Now, maybe we'll get them both at the same time. If she's right, she'll add Tykerb to my Xeloda. If not, there are other new treatments for estrogen positive cancers...and mine has always tested highly positive to estrogen. But first, I might have a little radiation to my skin. That way, I'm not fighting that. I have to set up a consult with that other brilliant doctor, the radiation onc.

So, as much as I want to sit in the warm(er) Texas sun, I'll slog through here for a few more days for my PET scan, head back down for the holiday to celebrate my first RV Christmas, and wait for what's next. I'm still on Xeloda, and numbers be damned, my skin is responding to it, if nothing else.  My sisters in treatment tell me that sometimes the antigens are high because of treatment. I'll chose to believe that's the case for me.

The Xeloda isn't horrible. I'm tired, my appetite gets poorer, my hands and feet are sensitive and I am as emotional as it gets...all within a three week cycle. My new cycle begins again December 19.  But compared to this summer's constant malaise, I'm feeling overall better. So, onward.

Merry Christmas from Texas, y'all. Thanks for your love and support. Feel free to shout back here, on Facebook or Twitter.


Monday, November 27, 2017

My Second Opinion: Three Hours of Disappointment

The MD Anderson Cancer Center Logo displayed on a granite waymarker. The word cancer is crossed out.
One of the hundreds of signs near
the many buildings on this campus.
I was warned. I just didn’t believe. I had to think that a research hospital that is studying the very symptoms I had been dealing with would be able to offer some insight and a treatment plan. Maybe this advanced hospital might have an upcoming trial – one hears about so many of them. It seemed so right when I arranged my visit.

MD Anderson disappointed me.

I was inspired to call because they are studying a monoclonal antibody reaction to new treatments – the very problem I was having. I had a list of questions to answer.  I gathered all the information that I could gather, and they arranged for the rest. My coordinator told me that I should reserve three to five days. I used all of my hotel points to reserve a five day stay at a hotel near the massive medical complex that is MD Anderson. She told me that they would complete my schedule after I met with my second opinion oncologist.

I was done in three hours. I met with a fellow, a social worker and the oncologist.  That’s it. I am welcome to call if I need. I will lose all of my points, having to check out early.

The fellow did well enough, taking our history and working his way through our questions. He and the doctor both examined my history and my situation carefully enough. The doctor questioned whether I should be on additional hormone sensitive treatments like Letrozole or Ibrance. He’s going to suggest we substitute Zometa for xGeva, because he is sure that my incredible debilitation for months was just that and nothing more: a reaction to the xGeva.  But overall, he didn’t seem very inspired to shake the tree and seek additional treatment. I heard nothing cutting edge, no advanced thinking. I can carry on, because apparently I'm just an average Stage IV patient.

The Xeloda seems to be working, and although it’s tricky to manage, I seem to be making progress. Unfortunately, I also have new skin mets appearing, then disappearing as the Xeloda attacks. My wound is still open. So, he is concerned. But he’s not interested in treating me, there are no trials that make sense, and he doesn’t think radiation is a good idea. (Tough -- I think it makes way more sense than this constant creeper battle.)

What chapped me further was his dismissive attitude. I explained to him that I am study- and data-driven, but despite my explanations about the studies, he still thinks there is no connection to thyroid meds. He mocked my diagnosis of “radiation asthma.” (You know, the problem that everyone on this thread complains about.)

He committed the greatest sin of all, as far as I am concerned as a patient: he was patronizing.  I think you know me well enough by now to know that doesn’t fly with me, ever.

When we were done, I realized I’ve been given a gift. I’ve had confirmation that the path I’m on now is fine, that MD Anderson is not as prepared to be cutting edge as they claim, and that I need not worry about the quality of my care. Clearly, I’m doing as well as I can expect.

My next CT scan will be in December. I’ll update you all.

Dr. T, thanks for being my partner, not Dr. God.
.