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.

So Far, So Good

My apologies for the delayed update. The longer I go between them the longer they get! My last post, August 3rd, seems forever ago. I’ve already had eight doses of my new drug regime since then…let’s catch you all up.

There was a little confusion around the first appointment on August 14th. I hadn’t been well briefed on what would be transpiring other than I was starting my meds, and I have to take some responsibility for that since I never ask questions.

Upon arriving my coordinator came to fetch us since she’d moved my app’t to The Henri and Belinda Termeer Center for Targeted Therapies. On the walk down she was chatting away when the phrase “…since you’ll be here all day,” caused both Satin and I to gasp…”What do you mean all day?”

Poor Satin, my escort for Wednesday’s app’t, ended up toiling away at MGH for eight hours with me. Thank goodness she was there to entertain me though. I would have been a lot less easy going about it had she not been present to keep me smiling and laughing.

Once we had that little detail ironed out things moved along to meetings with my oncologist’s PA, my research RN, and the afore mentioned coordinator. I had several ECG, and enough blood drawn to fuel my own bank.

The lengthy app’t was due to a four hour window required between labs. Fortunately, it’s only the 1st dose that requires it. To while away the hours Satin and I visited the roof top garden, which is lovely. The view is out across the Charles River Basin and takes in the Boston skyline…stunning.

To Make a Long Story Longer

I discussed the drugs in my last post, what the intended effect is, and the possible side-effects, so I won’t reiterate those. Nothing much to report, so far so good. My blood work yesterday was nearly normal, just a slight drop in white blood cell count, though my blood sugar went to 133 – that leads to another story I’ll get to in minute.

They seemed surprised my blood sugar was that high. I eat a Keto diet and we expected it would keep my blood sugar down. That, however, wasn’t the first surprise we had that day or the last.

Just When I Thought I Had It All Together

I was feeling all confident and spunky, intending to drive myself in to Boston for the first time since I started treatment. I was about to depart, and the last thing I do before leaving, is pack my drugs in its ice pack, zip it closed, and grab my tote bag.

I head out to the garage, get in, and the brake won’t depress, and the engine won’t turn over, and the lights–I’ve never seen before–pop on.

Are you fucking kidding me?

SOS call to Satin, SOS call to Paul. Satin wins? She rushes over to get me. We arrive in Boston a half an hour late. My coordinator assures me it’s no big deal. I am ordered to relax. Grumble, I hate being late and I hate dragging Satin away from her niece and nephew day (and yes I know you are happy to do it… thank you, I love you).

Once settled into my room with the staff, I regale my PA, RN and Satin with last weeks hi-jinx.

Oh. No. You. Don’t.

The previous week Donna had suggest I try Excedrin for the migraines I’ve been plagued with since May. Lillian and I pick some up next morning, and after that days app’t we settled in at home with lunch. I read the box aloud to her, scoffing at the ingredients.

“Acetaminophen, oh that never works for me. Caffeine, that’s the same amount in my tea. Ah, aspirin. I haven’t had that in years. Maybe that will work?”

Feeling skeptically hopeful, I take two in hand and, bottoms up!

Two hours later, I’m sorting laundry, and I realize – I do not have a headache.

It’s a miracle. Not only do I not have a headache, I don’t have any of the lingering aches and stabbing pains that I have relentlessly experienced since May.

I marvel at this new turn of events. Bless Donna, she is a genius, I will never doubt her again. Then, mid-detergent dump, I pause…Hmm, am I peeing?

Why yes, yes, I am. (No worries though ladies. If you have not tried Icon undies for bladder leakage or Thinx period panties I whole-heartedly recommend them).

My lack of bladder leakage fear aside…what fresh hell is this?

This is not on the list of side effects for ANY of the drugs I am taking! But, I do have a little trouble with caffeine and urgency.

OH. NO. YOU. DON’T.

Life? I hardly think that curing my migraines is a fair exchange for the loss of bladder control. In fact, given everything else you’ve thrown at me, this seems patently unfair. This is totally unacceptable.

No worries, it ended there. I haven’t had any problems since then.

That is the story I related to the ladies. I had them rolling. It was very funny. Donna couldn’t wait to tell Dr. Juric just so she could hear his laugh (he’s a hearty laugher). She asked if I’d take the Excedrin again. Yes, but only if I’m wearing my Icon undies.

I like these people a lot. Which is good seeing as how I might be stuck with them for the rest of my life.

Who Left That There?

Satin and I departed, leaving behind an air of mirth. We head to Medford for lunch at Tenoch, a Mexican place. It was delicious. We decide to get some work done at Battle Ground.

While I am sitting here yesterday (as I am now as I write this) I am thinking of earlier, and what a coincidence it was that my car was dead and I had to go into the house where I found my drug bag sitting on the counter.

What? I know! I said the last thing I did was zip the bag, grab my tote, and leave, but as I discovered as I waited for Satin to arrive, I had not put the ice bag in the tote. Sigh. What the hell is wrong with me (a rhetorical question at this point)?

Not So Fast

I was here yesterday at Battle Ground, recalling that incident when a fricken light bulb went off over my head. The last thing I did was take an Ibuprofen.

Ohhhh, Noooo!!!

Do you know what you do when you take Ibuprofen? You eat something. I had 6oz of almond/cashew milk.

Ohhhh, Noooo!!!

What have you already learned about my day? My blood sugar was a bit higher than expected…because it’s supposed to be a fasting blood test you dope. Guess what I did last week too? Ate before my labs. What is wrong with me??? Yaya, cancer, stress, whatever.

I have been fasting 5 days a week since April. What are the effing odds the one day of the week I need to have been fasting that I have eaten something? Two weeks in a row?

For crying out loud. Now, I have to email them and confess my sins.

Coordinator laughs at me, and once again orders me not to stress. But still, screwing things up is getting tiresome.

Tying Up The Loose Ends

My car battery, was just old, dead and unrecharable, AAA replaced it. NBD.

The blood sugar wasn’t high enough to trigger a protocol response. PA decided to wait and see where it settles…I promise I will be fasting next week so it should be lower.

One more thing, I didn’t reveal this widely because I was having a hard time processing it, and I didn’t want anyone to be overly concerned.

Nothing has changed. My treatment is still the same, my expectations for positive results are still the same. The only thing different is a more accurate count and placement of the tumors.

The CT I had August 2nd revealed about twice as many tumors as we previously been aware of. Nothing was done incorrectly, each test is unique and has different abilities to see the tumors. I wasn’t surprised by the results since the previous reports alluded to other tumors. But I’m human, it was scary to read I have twenty-six+ tumors rather than the thirteen+ we’d been briefed on.

As I said, this changes nothing. All the tumors are being treated by my drug regime. Overall, I feel pretty darn good. I might be experience a slight change in the taste of food, and a dry mouth, jury is out. It’s hard to tell sometimes if what is occurring is a side effect or the Mexican food I ate for lunch.

My spine seems extra achy today, but I didn’t sleep well last night. Those of you who live around here likely experienced the acrid smoke from the N. Andover fire. It kept Paul and I up all night after the smoke settled right over our neighborhood,

I think that’s enough for now. I will try to be better about updating so you don’t end up reading another novella length post.

Next week I have my second injection of Fulvestrant, an eye app’t, and two days of lab work. Best of all though is Kayla and Chris’s wedding is Labor Day weekend and Declan will be wearing a kilt! I’m sure we’ll all die from his adorableness.

Love to all.