Unanswerable Questions

Hello friends, family and other interested parties.

It’s been a while. Mainly because nothing much had been happening on the cancer front. No news is good news as they say. But that’s all changed this week.

Quick Recap: Tumors are measured and given an aggregate number that reflects negative, positive or no change. Every CT I’ve had over the last few months has shown a “major shift,” meaning I was in the negative numbers. My tumors were shrinking. Yahoo.

If you’ve been here from the beginning you may recall that when I was first diagnosed with metastatic breast cancer (6/2019), the retina specialist broke the news by saying “I have good new and other news.” Which has become the family’s way of comically imparting important information.

Brace yourselves, I have good news and other news.

The good news – I do not have a brain tumor.

The other news – I do have several lesions on my skull inside the dura (the first layer between the skull and brain). There are also a scattering of questionable spots on my liver.

The unanswerable questions are many, but there are general assumptions we can make.

Over the last fourteen weeks I have undergone two, total hip replacements. The right hip, fourteen weeks ago in August, and the left, six weeks ago in October. Both were necessary to my quality of life and I am 100% happy with my decision to have them done. However, there may have been serious consequences as they required my going off my cancer medications for ten days each time.

When I made the decision it was with the full knowledge that I was risking losing control over cancer growth if my medication failed. The problem of course is that I wouldn’t know that until there was cancer growth. And, I would never know if going off the meds were the trigger.

Cancer meds randomly stop working all the time. As I am on three medications, it is also possible that only one of them has stopped working because maddeningly, I still had negative growth in previous tumors even as I had new one develop on my skull.

I am now off all drugs and out of the trial that was at least partially working, and have to start all over, hoping another cocktail of meds will have as much success.

This week, I met with my oncologist to go over my options. I could take the regularly prescribed treatment of approved drugs. I could try chemotherapy (neither of us thought that was a great idea). Or, I could volunteer for another study. There happen to be four I am eligible to join.

I believe in the importance of research and clinical trials, and though being a participant has risks, I am willing to take them. My cancer has no cure, but every step we take, any information gathered, makes it possible for the next women in the cycle to live longer or have a better quality of life than the last. It is why I am still here. It maybe what saves my daughters one day.

It will be a few weeks before I know which study I’ll be participating in because my cancer needs to be retyped and tested for new genetic markers, or mutations. I have PIK3, a mutation that is common in breast, liver and colorectal cancers. That is what the drug palbociclib was treating, one of the three I was taking (you know those annoying Ibrance commercials? “I’m living with metastatic breast cancer…”).

Speaking of retyping, that is one of the other possible causes of my medications failing. If my tumors are no longer ER+ (estrogen positive) then the medications I take that target that feature won’t work.

Speaking of not working, guess what else doesn’t work? My left knee. There was already a plan to undergo a total knee replacement in the spring once the Covid craziness died down, but since I announced I was going off my meds, both daughters, my husband, and my physical therapist all enthusiastically proclaimed it a great time to get my knee replaced.

Sure, sure, on paper it makes sense. Once I start on a new drug trial I will not go off it again, making it likely that I will suffer with the pain and debilitating effects of arthritis in my knee for the rest of my life. My daughters are still home and able to care for me, drive me to app’t and keep me from going stir crazy during the remainder of this pandemic. And in order to get full use of my spankin new hips (which may have cost me a few years of my life) a new knee is a must to keep recovery moving forward. Otherwise, I can’t progress to walking at least a mile, my modest goal for undergoing the surgery.

But seriously??? Another major surgery (scheduler just called, it’s on the books for Dec 8th. I wish it was a week earlier) so soon after having just had two of them fourteen, and six weeks ago??? Okay, it’ll be seventeen and nine by then, but still!

Easy for everyone else to say it’s a great idea when they aren’t the ones getting all drugged up on narcotics, suffering the fun constipating effects, along with dopey, brain fog that comes with it. Having to ask everyone to do nearly everything for you, and feeling like a pest. And I swear, if one more person mentions that knee surgery is more painful than hip surgery, and the recovery is longer and more painful too – I will demonstrate said pain on their ass.

Bluster aside, I am grateful. I had a good run with medications I tolerated with minor side effects for sixteen months and I still have options. That’s a hell of a lot more than many women get.

I’m being treated at what is arguably the best hospital in the nation by the leading researchers in their fields. I have two new hips that work, and are nearly pain free. I had relatively quick recoveries with the help of a team of very kind home care nurses, and physical therapists. Not to mention my devoted family and cadre of faithful friends.

I’ll post more when I know more.

Don’t let the unanswerable question in life get you down or drive you crazy. That’s what politics is for.

Love to all,

Lynne

Another Wicked Good Report: Yawn…

Is this getting boring? OF COURSE NOT!!! Who could get tired of hearing their health is improving? I can’t imagine ever taking my progress for granted. I’m beyond grateful for the people and drugs that are extending my life expectancy.

Two weeks ago I underwent another round of CT’s and a brain MRI…nothing in there of course. Can’t tell you how many times I heard that joke last week.

The CT showed more decreases, and/or stability in the remaining tumors-those are mostly the bone lesions. The decreases mostly soft tissue, like the lungs, and liver.

In other news, my clinical coordinator told me the trial sponsor has decided to forgo the second phase of the study, and jump right to phase three. That is spectacular news. It means patients in the first phase of the study (ME!) are doing so well they are willing to take the financial risk of funding the double blind study.

And guess what? The arm they decided has the best potential for success is the one I am in! FYI: an arm is the combination of drugs being tested. I’m in the phase one study of the drug DGC-0077 which has 6 arms. I am in arm E, taking a combination of palbociclib, fulvestrant, and the GDC-0077.

That is an incredible boost of confidence in the particular drug combination I am taking. It’s especially exciting to my team since I happen to be the only one in this arm at MGH. My team will also be taking part in the phase three trial.

Another milestone, I have reached the 6-month mark which means I get to drop down to one clinic visit a month. I’ll still have testing (CT, MRI) every other month, but no more lab/nurse/doctor visit on day 15.

Other than a few annoying side effects, like my fingernails breaking off at the nail bed…ouch, not much else is going on. My hair still thins about once a month but I don’t seem to be losing all of it. The mouth sores are under control so long as I don’t indulge in things overly acidic, or spicy. My sense of taste comes and goes which can be disheartening but is tolerable.

What’s tolerable is way of life on sooo many levels these days. But I’ll gladly take tolerable for another ten, fifteen years at least.

Happy Valentine’s Day

Love you all.


Stealing My Doctor’s Thunder

I had a CT scan two weeks ago but circumstances caused a schedule problem, and I wasn’t able to see my oncologist until today. They hate when that happens because it means test result are released before I see him. I assured my team that I wouldn’t over react, when I read the results, and I didn’t. I might have got slightly emotional, but that was it.

Today, when Dr. Juric walked in all smiles, I completed stole his thunder when I blurted out I’d read the report. However, I am not a medical professional, and while I knew the results were good, I didn’t know how good. He got to tell me that part.

“It’s a major change. It couldn’t be better.”

I’ll never tire of hearing that. And I hope I don’t have to for a good long while.

We didn’t have a long talk about specifics, other than some lesions are completely gone, others are significantly reduced.

As I saw the other team members they were all smiles. Nothing is more reassuring than a bunch of smiling happy medical professionals congratulating you.

He asked if I was happy. I told him if he’s happy, I’m happy, and he was very, very, happy.

So, Happy, Happy, Holidays to Everyone!

I’ve Been Holding Out

Last week I had a CT but didn’t get the results until today. However, I’ve been holding out on you. I also visited my eye doctor.

With tears in her eyes she showed us (Jen and I) the scans. No fluid, no cancer. Whoa!

It was hard to not extrapolate that to mean the remaining cancer could have been similarly affected. It was hard to not tell everyone the good news, but I didn’t want to have to temper that a week later with a more sobering report.

NO SUCH PROBLEM!!!

My oncologist’s exact words today were “I couldn’t be any happier with the results.”

According to their metrics, the regression was 1.3% away from being considered a “major” change. This seemed to be slightly unexpected, and very much celebrated by the team.

They will never tell you what outcomes they expect other than generalities and ranges because everyone is different. Nor will they say what more I can surmise from this progress. But, they did confess, it wouldn’t be unrealistic for me to see a continuation of this regression.

I’ll take it.

The crappy stuff, the incredibly awful mouth sores, will be treated with a steroid rinse. It’ll be a while before I can tell if that helps. Of course that cure has its own side effect too-candida. Not great, but a yeast infection in my mouth versus open sores, is a no brainer.

Overall, the last few weeks have been going very well. I’ve had energy and been able to do everything I wanted with minimal side-effect interference.

It was the mouth sore that finally put a damper on my appetite and sense of taste. Only the unpredictable diarrhea is the true buzz kill.

As will always be the case, the end of week two/beginning of week three in the cycle will bring a drop in my WBC, platelets, and energy. Today is day twenty two so my levels should start to go up over the next week.

And so you know I’m not all talk, once I got permission, I got my flu shot.

Next CT is the day before Thanksgiving. I have a lot to be thankful for this year. Besides the obvious pharmaceuticals, it is you all that I’m most grateful for.

You have kept me laughing, cried with me, hugged me, worried about me, made terrible jokes, and spent many hours driving me to and fro.

I love you all.

Lynne

But, I Feel Better!

Darn, I was supposed to start cycle two today but my white blood cell count and neutrophils are too low, though they are slightly up from last week. Protocol, however is the boss here so I’ll be off the palbociclib for another week (a cycle is 4 weeks, palbo is 3 weeks on, one week off, GDC is everyday all 4 weeks, and Fulvestrant is 1x a month on 1st day of cycle).

The concern now is this screws up the timing of the next cycle and those that follow. But, that isn’t my problem to solve so while the research staff figures out how to rectify the situation, and juggles my appointment schedule, I shall regale you with tales of the last few weeks.

Side-Effects Strike Back

Side-effects have come to plague me since I last wrote. Some worse than others. Intestinal distress has struck (without warning…fun) but we seem to have found a measure of control between the Imodium and not eating too much at once. That’s pretty easy since I don’t have much of an appetite anyway.

A mouth sore that had been torturing me for two weeks has completely healed. I lost my sense of taste, but that has returned to about 70% since being off the palbo for the last week. I’m guessing that will be a permanent two-weeks on, two weeks off kind of thing. I can live with that. The idea that I wouldn’t be able to taste anything the rest of my life was a tough one, having it even partial back is a big relief.

My blood sugar is normal, no worries there. A testament that anyone with prediabetes or diabetes would be greatly helped by adopting a Keto Diet. It has saved me from suffering hypoglycemia, a side-effect of the GDC and having to take yet another drug. I’ll be posting about my own experience with this new lifestyle later.

My hair can’t decide if it’s falling out or not. One week it seems to be dropping out at twice the rate as it typically does, then returns to normal. Time will tell. I don’t care much, I look great bald.

Between the mouth sore, intermittent diarrhea and loss of appetite I haven’t quite worked out what to eat on keto when I don’t feel well. Anyone with ideas for that, I’m all ears. I can only eat so much tuna salad and scrambled eggs.

The Facts of Life

LOL, are we in TMI territory yet? Oh well, you take the good, you take the bad here.

Here’s the good. Declan in a kilt! Oh my heart. He was so adorably handsome. The whole wedding party looked terrific, especially, Kayla and Chris (Declan’s parents, the bride and groom). We all agreed it was one of the best wedding we’ve ever been too. A picture perfect day all around.

The venue was lovely, the hotel was laid out perfectly for hanging out and greeting people in the lobby and lounge. The weather cooperated. Eva and Lillian were in charge of Declan and his 17mth-old sister Keira. Paul and I got to hang out with them quite a bit too.

We’ve know the Danheys, the bride’s family, since we moved in next door to them 24 years ago, and have been fortunate enough to be included in the major celebrations throughout the years. All of which means we are very familiar, friendly and in love with the extend family. And seeing that I’ve been caring for Declan for the last 6 years, I’ve gotten to know and feel close to the Murrays, Chris’s family, as well. All of which made the weekend feel like one big family celebration. As it should be.

Baby, Baby, Baby

This week I got to see my friend Sara when she came down to fill out her baby registry. I am keeping busy planning her baby shower, making decor, and menu planning, my forte, and I’m grateful for such a happy occasion to keep me distracted. And to celebrate and honor Sara, Ben and their soon to be little man.

Write This Way

NaNoWriMo (National Novel Writing Month) is nearing. I “won” 2010-2016, participated in 2017 and 2018, making this my tenth year. I’m not sure if I’m writing something new or reworking one of the previous years work. But I will be hosting one night a week here at home, and as usual, hosting the Kick-Off Party, The All Night-All Write, and TGIO and Reading. Whew!

Truthfully, I’m having a hard time caring about my writing. Not to get maudlin on you, but I’m struggling to find it relevant. I have promised to finish the novels I have started so they can at least be read by the few who care to. It’s the least I can do I guess after spending so much time being a “writer,” the last 10 years.

Misconceptions

Metastatic breast cancer is incurable, thought treatable. I will be having a CT at the beginning of Oct. This will be the first indication as to whether these drugs are working to stop the cancer’s growth. That is why it is so important to manage the side-effects. The cancer itself isn’t the problem presently.

I’m sure I wrote about this before but I want to clear up something. One question cropped up several times over the last week, “How long will you be on these meds?” The answer is “Forever or until they stop working.”

More often than not it is the side-effects that people find intolerable, physically and mentally and in despair give up on treatment. My research team tries to save me from going down that path, and keep me as healthy as I can be. I truly appreciate their attention and concern.

I can easily see how depressing life becomes when you aren’t able to enjoy the things you normal take for granted (LOL, words to the wise…be grateful for trauma free eating and pooping).

Nothing to See Here

Nothing dramatic happening otherwise, at least not to me. I’ve had my sister’s two flooffy pups this week while she vacations in Paris and Nice. Strangely enough, that is also where the honeymooners have been this week.

I love you all. Thank you for reading. Thank you for responding, writing, calling, sending me gifts. It is humbling to have so many people hoping, praying and wishing me well. Your kindness is deeply meaningful to me. Life is Good.