#trodelvy

Yes. Yes, we have. We have been training for this moment. We have been preparing. 

(each all caps is a link to a previous post - click through if you missed them)

THE ONLY EASY DAY WAS YESTERDAY We knew harder days were coming. It’s how this works. Every day a treatment works means a day closer to when the treatment stops working. Today is gonna be tough and tomorrow tougher still. That’s the hand we were dealt.  I got 21 months on that line of treatment (with some whackamole radiation added on top). Each month was pretty much borrowed time. No surprises here.

GET COMFORTABLE BEING UNCOMFORTABLE Change, upheaval, uncertainty, new side effects - it’s all sand in our undies. Expect it. Oh sure some would say embrace it, but I think it’s enough to just accept it, to say yup, that’s how it is. Screw embracing it, just nod and move past it. 

DON’T RUN TO YOUR DEATH No need to put things in fast forward. They’re ticking along at their own pace. Don’t make stupid mistakes, keep your head, remember your strategy and your tactics. Whining is fine but at some point it’s a waste of time and energy. As is wallowing. Put a limit on the wallow.. I wallowed a fair bit between Wed and Friday (including during my Zoom metastatic support group meeting). Now the time for wallowing is over. (your wallowing time might be shorter or longer - you get to decide that. Just be sure it doesn’t become an indefinite thing....) 

HAVE A SHARED SENSE OF PURPOSE For me it is: keep kicking this can down the road. The length of time I spent on first line of treatment of Tecentriq/atezolizumab + taxane has meant that a whole brand new drug reported out trials and actually got through Canada’s very slow tortoise-like approval process. I’ve told my oncologist I’m interested in aggressive treatment and clinical trials.  I am a bit sad that my regular oncologist is away. I like her locum but we simply do not have the history and there’s so much trust required in this relationship. And for all that we all walk around touting evidence based medicine, so much of this comes down to judgement calls. Do you wait for another scan, make a call now? Push for a trial, use standard of care, try to go out of the box? I believe she and I are on the same page but to an extent it’s something I won’t know for sure until a bit more time passes...

 Alas, we’ve possibly hit a small snag - on Friday I had a follow up phone call with the oncologist who was feeling less confident that Trodelvy would be quickly approved for me. There’s an issue with that one biopsy last year which showed faint estrogen positivity. Everyone still considers me triple negative (& for that matter, this drug is actually in trials for ER+ pts & showing some good results too so it’s not as if that means it wouldn’t work for me, even if all my tumors are faintly ER+. That said, the current Health Canada indication is only for triple neg metastatic breast cancer) but that biopsy might complicate approval. Funding is apparently also more complicated than she anticipated. She filled out a bunch of forms on Friday & now we wait and see. 

If it all goes sideways, we have some options. 

-appeal the decision.. We have an oncotype test from 2018 which categorized me as triple negative which we could submit.. We could do a repeat biopsy and hope for a clearer triple negative result. 

-this drug is also available in the US and I know at least one Canadian woman who accessed it in Bellingham. 

-move to another chemo and worry about sorting out this one as a 3rd line. 

We make the plans, make the notes and flowcharts 

& then we let go of what we can’t control.

& get back to reading good books 

Book recommendation today is Lori Foster’s A Perfect Storm

I’ve now completed three cycles of Trodelvy (this drug is given on a 21 day cycle, with two weeks on, one week off) & my first CT scan is not great. I have some new lesions in my lung & liver, and now my kidney wants in on the action & has developed some suspicious spot which could be infection or abscess but is also suspicious for mets ... & given that I don’t have any symptoms of kidney problems, I think we’re leaning to it being a met.   

Now normally with a progression you would switch treatments. But these new growths aren’t huge (yet. My cancer, alas, does love to grow large quickly...) & there is just a tiny possibility that some of this new growth happened during the almost 6 weeks between my last scan & stopping tecentriq + abraxane (Dec 17) & starting Trodelvy (Jan 26). So my oncologist, after conferring with a colleague, recommended trying 2 more cycles of Trodelvy and scanning again at that point.  My other option was to switch to the next line right now. 

I’ve decided to go ahead & try two more cycles of Trodelvy & fingers crossed the cancer doesn’t explode like a maniac in the interim. If there’s a chance this works for me, I don’t want to burn through treatment lines too quickly because as you’ll remember, metastatic triple negative cancer doesn’t have very many to start with.

Trodelvy is supposed to be our new wonder drug but here’s the thing: Trodelvy only works for 1/3 of the people who try it. So it’s possible that I’m just in the 2/3s that it doesn’t work for.

This is one of those things that people don’t talk about much or realize. I heard from someone recently whose first line of chemo was not effective & they had not been prepared for that at all so it was a huge gut punch. Some people might know that after a while chemo stops working, but not many people realize that many of these drugs never even *start* working for most patients. You have to trial & error them and hope that you end up being a responder.  It’s just a bit of a frantic race to try to find something that works before the cancer takes over & before all the harsh poisons you keep pumping in damage the body too much. 

My 3rd cycle of Trodelvy was dose reduced (75%) and I now have to again use the filgrastim shots to increase my white blood cells. Overall I tolerated that cycle very well but it trashed my red blood cells & my hemoglobin was 82 at the last check. The oncologist said if we start dipping into the 70s we should look at a transfusion. I seem to keep hovering in the 80s -90s range - low enough to feel it but not low enough to transfuse...

I was scheduled to start Cycle 3 of my new chemo Trodelvy and it wasn't until we got there that the infusion clinic was notified that the offsite pharmacy didn't have the meds ready and wouldn't today...so I'm rescheduled for tomorrow.

Not sure yet if that means my day 8 gets bumped too to Thursday or if we will go back to Wednesday.

One of the things that bugs me about things like this is the assumption that everyone can just rejuggle their schedule. I mean, yes, I can make this work but don't just assume.

I did not have a great night (back pain plus diarrhea) so I was pretty flat this morning and looking forward to the steroids but instead I came home and crashed for a long nap.

We'll try again tomorrow and hopefully I can find enough things to distract me from freaking out about treatment delays. I bloody hate treatment delays.....

Dear specialist pharmacy:

Yesterday was triple negative breast cancer awareness day. I did an Instagram post about it - here if you missed it

Hemoglobin and albumin are still tanked so that sucks but otoh, my liver values continue to improve and most are normal! Hopefully this trend will continue.

Hey guys, way back in April 2020 I posted this

Trial halted

about a trial that got halted "for compelling evidence of efficacy", ie, because it was working in the treatment arm and would be unethical to continue with the control arm. Guess what? That was Trodelvy! Cool huh?! Took >1.5 yrs to get the ball rolling in Canada (& funding is still up in the air, though CADTH, the Canadian group that makes recommendations on drug funding did just recommend it for coverage so we might see some provincial coverage for it soon).

I’ve been updating more on Instagram (in the stories & the Trodelvy pinned highlight) but here’s the wrap up of the first cycle of Trodelvy - overall fine, lots of heavy fatigue on certain days, but few other bothersome symptoms.  On the days I had super fatigue I mostly dozed and watched shows. On the days I was a bit better, I was still fatigued and so:

Also, it tanked my blood counts. My neutrophils are at 0.7 (normal should be over 2. I need over 1.5 for the next dose of Trodelvy) and Hgb at 81 (should be 120 or over. My oncologist would order a blood transfusion if I drop below 70). This has earned me a one week treatment delay. We will retest next week & hopefully I’ll be recovered enough to get treatment next week.

The bright light is that my liver values - while still elevated - have decreased. This is a good trend! I’m hopeful that this means that the chemo is already working on the liver mets. 

Now we just need to get my bone marrow working, get my blood counts up, & get healthy enough to get the treatment. 

I’m planning on enjoying this bonus week off treatment as much as I can :) 

I saw my oncologist yesterday and we are set to go with the new treatment Trodelvy tomorrow (Wed Jan 26).  Trodelvy is the brand name of the drug. The other name is sacituzamab govitecan which is a bit of a mouthful. I’ve watched some seminars where oncologists shortened it to “sassy”. 

My lab values are not great. My liver enzyme values are climbing fast, while hemoglobin and albumin are tanking - all signs of the tumors in my liver going out of control. I was worried about how that would affect my eligibility to start the Trodelvy but the oncologist is fine with proceeding.  This drug is known to further raise liver enzymes so it will be tricky monitoring me. Would elevations be due to the cancer not responding or the drug? 

The infusion will be in a private clinic, but a different private clinic than the one I’ve been using for Tecentriq. It’s not in a particularly convenient location and there’s a chance that eventually I might be able to switch to one closer to me but right now we are stuck with that location. 

There’s a lot of uncertainty about the drug, the side effects, the efficacy and just how it will all go & how I will feel after. It’s very much an unwelcome change to have to go off a treatment whose rhythm I’ve gotten used to and found adaptations for. Now I’ll be starting from scratch again and learning to deal with the side effects which seem to vary so widely from person to person that it’s impossible to anticipate what will happen. And of course the biggest issue of all is will my tumors respond to this treatment. We won’t be scanning until at least 3 cycles (ie 9 weeks) of the new drug are on board. 

We had a lovely evening sky a few days ago & since them we’ve been mostly fogged in which I quite like. Still walking daily but I’m fatigued - the hemoglobin drop, plus my reduced lung capacity and the liver pressing on the bottom of my lung have been dragging me down a bit. 

Now I just wait to hear when my oncologist wants me to start. I'm honestly nervous about this...I mean yes, I'm relieved that the approval went through but also there's a lot of uncertainty about a new protocol. The side effects can be awful and then there's the whole thing of "will it actually work?". I had a whole routine with my current protocol and knew what to expect when. It wasn't necessarily super easy but it's the devil I know. Now everything will be all new & I'm anxious about how many "bad days" I'll have in each 21 day cycle...

but hope springs eternal and so do gardens....some bulbs in our garden are already sticking their green noses out