nevertellmetheodds2017

[nevertellmetheodds2017]

Margaret's family has set up an online memorial page to share our memories and grief.

The link is below.

Please feel free to share with any of Margaret's friends, I am trying to post across various platforms but Margaret had a vast online community and I am sure I will miss some places.

[nevertellmetheodds2017]

View this post on Instagram

A post shared by margaret | metastatic triple negative breast cancer patient (@itisjustastage)

Update up on Instagram

[nevertellmetheodds2017]

July 25, 2022 update

What is really happening & we'll be finding out in the time soon

- are metastatic tumors stable or growing?  I had growths show in May with mets in liver,  lung, kidney , lymph nodes. I should have CT in August

- outside of that the liver is doing its own failure; it's caused physical & mental illness & can just turn off altogether anytime

- might have other prime organs just choosing to fail & there's little to do

- I'm very jaundiced

- I have to take a medicine to try to keep my brain functioning

- I'm essentially bedbound,  very weak,  have intermittent pain & meds

-is there any different treatment or chemo usable or is this all impossible by now?

Do not pretend end stage triple negative metastatic breast cancer patients thrive. That's why I've started to hate the word thrive. TNBC has highest rate of metastatic return and it has the shortest metastasis survival time.  That's where all the emphasis and fund-raiser needs to be : reducing stage 4 recurrence & raising its survival chances.

[nevertellmetheodds2017]

A timeline of all the shity stuff

In May had to stop Trodeve as CT showed progression and it wasn’t working. Plan to start Cisplatin and Gemcitabine. Also saw a psychiatrist who started me on Cipralex and some as needed Ativan.  

Weekend of May 28-29: Increased pain to liver and jaundiced

Tylenol 3 prescribed May 30 for the pain.

Blood work on May 31 showed increased bilirubin and LFTs so stopped any tylenol and June 1st switched to Hydromorphone for pain. Started taking Lactulose for slight confusion likely from build up of ammonia due to liver failure.

Liver Ultrasound done June 2: no obvious blockages seen.

Had cisplatin only on June 2nd and 9th

Bloodworkin on June 22 showed lots of improvement in liver function

Cisplatin AND gemcitabine given on June 23

Had blood work on 24 for Blood transfusion - got 2 units PRBC on June 26.

Bloodwork on June 29 showed very low platelet (40)

Chemo for June 30th canceled because of the platelets

July 2-9 sudden increase in left hip pain causing difficulty walking

July 7th - saw the oncologist and sent for hip x-ray: no fracture and CT ordered. Using hydromorphone for pain

July 11 CT of hip. Nothing obvious seen.

July 13 blood work done - platelets better

July 14 Chemo done cisplatin only.

July 15: home health nurse in to visit.

July 20: blood work today showed that liver numbers are even worse. Saw family doctor for issues with hemorroids and anal fissure (aggravated by still being on lactulose) and new cream prescribed.

Important info about using words around me: 

“Palliative” ✔

“D” word ❌

“H” word ❌

TLDR

So everything is terrible because Trodelvy didn’t do anything against my cancer. I have to get better so I can keep trying different treatment lines. My liver is an extreme danger to kill me. And my hip is still painful, I still have to take hydromorphone to stop the pain. I have difficulty walking because I am so weak. I am still confused because of the ammonia build up, I have to keep taking lots of lactulose and still have a hard time finding the correct words and need people to help me write. 

Check my Instagram @itisjustage

Contact me via email Mistressofthehounds@gmail.com or on Instagram. I don’t check comments or messages on Tumblr (but I’m happy to get messages!)

(written with assistence from my daughter) 

[nevertellmetheodds2017]

Metastatic breast cancer survival stats

I have had these notes for ages and I have shared them with people many times but so often on social groups, facebook, social media, zooms etc they’re unpopular and ignored.

Lots of people like to be in denial, pretending not to listen to reality numbers.

It’s bullshit pretending how much better things are. Here will be your quick lesson with the data. 

I will start with data from 2010-2015. Yup, not ideal, that’s 7 years out. I will update it for you but this has got to be one the best places to start so here we go. One article which will give you excellent view.

Table 3 is the place to look at. You will see it matters:

-location of metastasis 

-ER+ (estrogen) or neg

-HER2+ (human epidermal growth factor 2) or neg

-Triple Negative (TN)

Just have a look at each of the 4 squares. Pick a hormone category, look at the left up & down,  find 50% spot & go sideways across, pick whatever color chart you like, then go down to the bottom left to right sign. That will tell you at which months alive the median is falling apart. 

A median means that at a given point, 50% are dead, 50% are alive. 

(Just take a moment to pause & think this because this is the part constantly skipped on in discussions and social media. Half are dead but people pretend they’re in a full room of survivors. Way too easy to ignore and not count the dead… )

You can also look the other way. Look at the bottom left to right, find the number 60 (60 months = 5 years) and go up. Pick a color chart and go to the left when you hit it & you’ll see what percentage of that group hits 5 yr survival. All clear, right? 

(if you want to read the whole article, go crazy but honestly, the chart is all we need. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6311-z) 

Now it’s 7 years later and even though I’ve been ill and unwell in many ways, I will post the 7 year estimate & what is changing in the past 7yrs as announced at ESMO & ASCO this spring.

That is a summary of percentage groups hitting the 5 yrs. 

Some more details if you’re really interested: 

The HER2+: is the big wow, shit is happening section. Not only is their median outsource up, there is now a whole new thing about people with quite *low* HER2+ also responding. So a big thing (but the majority of MBC does not have HER2+) Still, this will be an area of much research and investigation. 

ER2+: disappointing news about palbociclib. Still confusing a lot but the thing that is supposed to be improving turns out that overall survival median is not really moving as much as they’d hoped. Here’s a link to an article this month. https://www.biospace.com/article/pfizer-misses-the-mark-for-overall-survival-in-breast-cancer-patients/

Triple negs changes in last years - look at the chart above & now consider these additional things: 

-if BRCA positive, can have special genetic treatment meds which buy time

-PD-L1 positive can respond to some immunotherapy to buy time 

-Trodelvy responders can buy some time 

Thing is, most triple negs are not hitting these three responses and what we seem to have added in the last 7 yrs is about 12 months to a median?

There is some excitement this year about a portion of triple negs testing some positivity for HER2+ and registering an additional 10 months! Very exciting if someone can actually get the HER2+ & it appears to be adding 10 months to the chart that’s above (I’m HER2- on three different tests so far so alas, that sucks)* 

That’s about it. That’s where we’re at today. 

This is the problem with social groups: dead people are way outnumbered and they cannot post or communicate. Because they’re dead. 

There are going to always be outliers and if they’re very active participants, they seem to alter the data but it’s a giant myth. They’re outliers, they’re freaks, everyone is studying who is responding long and why and how and none of it is really an instant reward to a viewer. We know what the numbers are for the whole group, every individual can have different outcomes - including a very fast death, or a longer survival to several years. It can vary for individual but as a population, the numbers are all here. Way more dead people than buying time so don’t get sucked in by the yellow outliers as representing the group stats & ignoring that there are tons of sad deceased members.

Reality is things are still pretty shit - esp for TNBC group. 

*I have been thinking about HER2+ so much and actually expressed how much I hoped having it. To which a HER2+ person got super pissy at me being jealous about it & blocked me because talking about how much better it would be and being all obsessed about it pissed her off. WTF ? 

[nevertellmetheodds2017]

Cancer screwed things up.

We were supposed to go for 4 days & 4 nights on Via Rail from Vancouver to Toronto, seeing the mountains and the huge prairies and the  beauty of Canada. Then we'd sightsee Toronto and Niagara Falls, while staying in a beautiful luxury hotel and then having a great flight home. 

I got for the trip: new prescription glasses,  new prescription sunglasses,  2 wigs, 4 new tops, new pants, new jacket, eyelashes!

Then my liver acted horribly wrong, has put me in huge danger. Trip had to be all cancelled 😫

#metastaticbreastcancer #breastcancer

#stageIVbreastcancer #secondarybreastcancer

#cancer #fuckcancer #cancerreality

#chemotherapy #chemoforlife

#fatigue #mbc #bcsm #busylivingwithmets #triplenegativebreastcancer

[nevertellmetheodds2017]

Too tired to blog everywhere. There's a thing on Instagram

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A post shared by margaret - metastatic breast cancer patient (@itisjustastage)

[nevertellmetheodds2017]

end of may 2022 update

so a bunch of things - 

1) CT showed progression again - in liver, in lungs & in kidneys! - so Trodelvy is not working for me. SAD 

2) my oncologist rapidly recommended I move to line 3, gamcitabine & cisplatin. Startal date was unknown until yesterday when I got the call - it’s Thursday June 2.  It’s an awful chemo series, & cisplatin makes many quite ill.  But it might be more powerful at smashing my cancer hard....

3) on Friday the 27th I spoke with a psychiatriast & got started with an anxiety & depresssion med (cipralex) & a benzo for general “what the fuck???” I had to start the cipralex at 1/4 per day for 4 days, then move up to 1/2, etc etc etc. Gradual, she said. Ok. Not sure I’m feeling everything because this turned out to be a crap part of my time as you’ll see below....

4) Last Thursday the 26th I started to experience quite a bit of pain from my liver. The one with giant meds is getting a real bastard. Thursday & Friday I sort of got through with some naproxen. By Saturday things were getting way worse. That evening I tried a hydromorphone. I slept well but Sunday I was teary, in bed, in pain & just falling asleep all the time. Cry, sleep, whine in bed, repeat. Monday I tried a Tylenol 3 by midday and it worked! I spoke with my oncologist and she signed off on me using the Tylenol 3 and we hope it keeps working. 

5) I’m going for blood work today and we’ll find out how bad my bilirubin is. I’m YELLOW all over so um, yeah, thanks liver or whatever the fuck is happening. The liver numbers are worrying me honestly. Who am I kidding. Everything is worrying me. 

Between the psych, the meds, the pain, the new chemo starting, the unknown what to do about my trip --- it’s all chaos & leaving me mostly in tears or just passing out to sleep. Like denial will keep me out of things. 

I’m also brain a bit out of it. I forget words, I’m very upset. I can’t focus on things. Either the hydromorphone left me or I’ve got some bad stuff happening in my brain (ammonia or brain mets).... or maybe it’s just temporary from stress & meds. I guess we wait and see. 

Ok here's my crazy blood report - that bilirubin explains why I'm a yellow person I guess 😟😯 & crap, the liver numbers are all 😮😫

[nevertellmetheodds2017]

third week of May update

On Friday May 20th I went for a CT scan and then saw my oncologist. She had hoped that radiology would give her a rapid reading but they were swamped & said that not only would they not get it done by end of Friday, but also since it’s a long weekend, they weren’t sure they’d have it by Tuesday. 

So, we wait.  

For what it’s worth, I think I have progression. Between some wonky liver function blood values and some occasional abdo pain, my suspicion is that the liver mets are growing. But it’s a guess.

We did spend some time talking about our next options - there are several chemos, there’s no way to know if they will work or not (based on the studies, statistically they all have poor outcomes. Like so poor that it’s mind boggling that this is what we have. Research, people! We need you to make actual working drugs for us!!) & they all have various side effect profiles. At one point, once she had gone through two chemos, I mentioned a third one I was thinking about & she said, yup, that’s a reasonable option too. It’s a random crapshoot. You take it, try it for 12 weeks, scan & see if anything responded (& hope in the meantime that your cancer doesn’t trigger organ failure) 

One of the options is an oral chemo, which some people manage to tolerate well but a fair number suffer extreme damage to the skin on their feet and hands caused by this chemo. And again, it works for a few people, doesn’t work for most. 

The IV chemos are all pretty much what you’d expect - nausea, fatigue, slamming your bone marrow resulting in low blood counts etc etc. And the bigger issue with IV chemos right now at my cancer center is that they’re so swamped they have a WAIT LIST!

So anyway, we wait for the CT scan results because we can’t decide one way or the other until then. 

She did start the paperwork for me to get transfusions if my Hgb stays <80.  Again it’s another thing that won’t be processed & organized until next week or later even?  My fatigue has been improving so that is nice but occasionally I just suddenly feel unwell, so that sucks.  Here’s a random weird thing that happened this morning: I woke up with puffy eyes and 3 random itchy spots: 2 on the face, 1 on the body. WTH??  It damn well better not be frigging monkeypox lol 

Also my mood has been increasingly cranky about all this. There is nothing good about this cancer contest, I know the odds are increasingly against me & it is mentally exhausting. I see some people constantly circling back to hope and good mood but I’m just not really feeling it right now & I think hope is just plain stupid at this point. 

I feel like I’m the little climber on this Price is Right game except it’s Treatment is Wrong, and I’m going to fall off that cliff any moment.  

I do have a fun thing planned but here’s the problem - I have to stay reasonably healthy - ie my liver must not be tripping close to liver failure - or I will have to cancel the fun thing. So that’s adding a huge level of anxiety about everything because the extent of my liver mets on the last scan was pretty concerning already.

I realized I’m so anxious and downright gloomy about everything that I also asked her to refer me to the cancer agency’s psych. 

Ok, so that’s it for now. Not a cheery post but hey, this is the triple negative metastatic cancer reality. 

[nevertellmetheodds2017]

meh

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...

So anyway. I’ll be doing Cycle 4 starting tomorrow, again at 75%. It’s about five and half hours overall with the drive there & back. I get 20mg of IV dexamethasone as prep so I’m usually pretty wired for the rest of the day (& the day after lol).  Remember to follow me on Instagram if you’re not already  Just like here, I post when I feel like it, which sometimes means there are long gaps... :) 

[nevertellmetheodds2017]

So, that was weird.

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:

Hey everyone remember I'm also on Instagram. The trodelvy stuff is mostly in my stories and in the trodelvy highlight ..

[nevertellmetheodds2017]

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

I'm doing ok right now. Still riding the steroid high from cycle 2, treatment 2 on Wed, March 2.

[nevertellmetheodds2017]

My neutrophils have recovered so today will be Trodelvy Cycle 2, Day 1.

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).

Metastatic cancer is a lot about kicking the can down the road and hoping for a new treatment. Atezolizumab gave me 21 months and now Trodelvy is my next kick.

[nevertellmetheodds2017]

Trodelvy update

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 :) 

[nevertellmetheodds2017]

X posting from my instagram

#trodelvy cycle 1, day 3. I redid my fearless temporary tat before treatment on Wednesday; in spite of moisturizing like mad, it's fading fast. I think you need to be a young juicy person for these to work best lol ..but it still makes me smile so there's that. Only other new thing is that my med box is overflowing with pills for my pills for my other pills and their side effects... So far the only side effect has been red cheeks. I'll be off steroids starting tomorrow so things might change then, but maybe not. Very unpredictable drug.

#metastaticbreastcancer

#thisismbc

#breastcancer

#stageIVbreastcancer

#secondarybreastcancer

#cancer

#cancerreality

#chemotherapy

#chemoforlife

#fatigue

#mbc #bcsm #busylivingwithmets

View this post on Instagram

A post shared by @itisjustastage

[nevertellmetheodds2017]

New treatment starting

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. 

[nevertellmetheodds2017]

Today we found out that I've been approved to receive the drug Trodelvy and the payment has all been sorted out. It's an expensive drug- $7,000CAD/dose & the normal schedule is 2 doses/21 days. Cancer drug funding in Canada is a whole big mess. This shit is expensive AF & all the government healthcare coffers are constantly empty so what's the solution... I don't know & I'm just glad that I got the approval and that our extended health insurance & the drug manufacturer figured out how to make it happen for me.

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

Update: I start on Jan 26!