Trodelvy - Round 1

On Wednesday I sat in the chemo chair for my first round of trodelvy. The formal name is sacituzumab so my nurse calls it sassy. I like it!

The first time they drip it really slow to make sure I don’t have an allergic reaction and they pumped me full of Benadryl. I had a conference call about 30 minutes after they pushed the Benadryl and that was tough. I felt like my tongue was too big in my mouth and couldn’t focus on anything. Luckily it didn’t last long and I think I got through my call without sounding drunk. Maybe. Ha ha!!

The good news is that I didn’t have a reaction and so far, I’m in good shape. Today is day 3 (day 1 of no post-chemo meds) and I’m feeling fairly normal. Maybe a little tired. I was able to make thanksgiving dinner with help from my parents and Dan plus we went shopping yesterday. Today I did the weekly grocery shopping, made cookies and 4 pizzas before the firetruck parade…which I watched from inside. Not bad for post chemo days.

I’ll go back for round 2 on Tuesday and then I’ll have a week off. The timing works out perfect as my next off week is Christmas.

Lucy was very interested in all the activity.

So loud, even inside!

Such a good girl.

Ryan was outside with friends, but Tyler did his usual hangout in his room. But, even he’s headed out to meet friends tonight. 

It’s been a nice long weekend and my heart is full. Tomorrow I will rest.

Change is Life

Dan and I met with the oncologist today and the recommendation has changed after consultation with the tumor board. While the treatments we discussed last week could be options for the future, they are recommending a more traditional breast cancer chemo called Trodelvy. There is more evidence of success with this medication so it makes sense to start there. 

I’m not sure why, but I’m a bit bummed. I think I wanted to try something different and I really wanted to avoid an infusion. Oh well. Suck it up buttercup.

It was explained that the tumor board doesn’t think my breathing issues are due to disease which is good news. We know that my first line of treatment impacted my lungs negatively, it sounds like the second line could have as well and we know this last treatment did. Pneumonitis has been with me for a while and it is time for it to vacate the building. This new chemo doesn’t have those side effects so the hope is that the steroids address my current issue and we won’t be doing anything to put me back there.

The other good news that came out of today is that my doctor believes my disease is under control. That is backed up by the fact that I haven’t had to take pain meds for disease in a really long time. Plus my tumor markers went down again. 

My new treatment will begin 11/22, the day before thanksgiving. Hopefully the side effects will take some time to kick in so I can enjoy my turkey. And maybe some shopping on Black Friday?

Marathon

I keep reminding myself that this is a marathon which is really hard for someone who likes to just get things done. I’m frustrated that we’re approaching the one year mark on this journey and I still haven’t had any ‘normal.’ That also means my family hasn’t had any normal either. So unfair. But, metastatic breast cancer is a different kind of beast.

I met with my oncologist today about getting off this merry-go-round. He was prepared and started by acknowledging the cycle, noting the only constant is steroids making improvement and then repeating the same hypoxemic problems once I’m weaned off. Phew, we’re focusing on the real issue!! Unfortunately he used a lot of big words so this is just my basic understanding of what we reviewed.

He had gone through my history and found that I have a mutation that is not commonly attributed to breast cancer. My previous oncologist has made me aware of this, but set it aside. He’s picking it back up and recommending we try an FDA approved treatment, although there were only a couple of breast cancer patients included in the clinical trial. He called it a braf+mek inhibitor. I am considered stable so he plans to watch carefully for 3 weeks. If my tumor markers start increasing, he has the next treatment plan in his back pocket. The good news is that both of these treatment are pills so no infusions in the chemo chair!

This recommendation will be presented to the tumor board for review and agreement. Plus he’s consulting with a pulmonologist. I love the extra review. We are not alone on this journey.

I only need one thing to work. Just one. Unfortunately we’re still throwing mud at the wall to see what sticks, but he doesn’t recommend a lung biopsy right now with the amount of oxygen that I’m on. What made me happy was his confirmation that we still have treatment options if neither of these work.

It’s a lot. So, for now I focus on Ryan’s 15th birthday and I allowed myself to put the Christmas music station on in the car. Simple pleasures.

I’m Home!!

3 days/2 nights in the hospital is a quick trip for me these days. I must say that I’m shocked they let me out this afternoon. But very pleased to be home already!! 

Dan came home a day early from Vegas and spent time with me at Roswell last night. He mentioned that is feels normal doing that and he’s right. It should not feel normal for him to visit me in the hospital. I certainly hope 2024 is not a year riddled with stays in the hospital. I’m ready to leave the challenges of 2023 behind.

My oxygen saturation is still not playing nice, but they tell me it will take time for the antibiotics to work so I’m glad they’ll let me wait where I’m comfortable and can sleep. And, eat well!! I had a horrendous coughing fit last night and hot tea would have helped. I know I can have that now when I need it.

This was a week where family and friends were essential. I’m sure Aunt Deb and Uncle Tom are looking forward to a break from us. We leaned on them 4 days this week. I cannot express my appreciation enough. 

I’ll follow up with my oncologist this week and hope to get a better understanding of what the scans and cultures are telling them. My lungs haven’t been right for a long time…let’s figure this out!

Not again!

Lots has been going on lately and it is a bit overwhelming. I landed back in the hospital yesterday and I am not pleased. But, at least it is Roswell where the food is better. I’m looking forward to French toast this morning.

I think I mentioned previously that I ended up with a nasty cold earlier in October and it seems it hasn’t fully released me from its grasp. I continue to cough junk up and ended up back on oxygen last week when my numbers were really low. Boo!! I hate it even more now after my month of freedom, but I acknowledge that I need it. And, hope it is a temporary situation.

Going back on oxygen earned me a CT scan on Monday. Unfortunately the scan showed a blood clot in my right lung so I get to add a blood thinner to my list of medications. The clot could be causing some of my breathing issues, but my oncologist didn’t think that is the full story which makes me happy because I didn’t either which we’re now seeing is true.

Fast forward to Wednesday evening when I was experiencing significantly worsening shortness of breath to the point where it was difficult to do anything. Coughing fits through the night made it clear that I needed to reach out to Roswell, knowing full well what was going to happen. While Dan is in Vegas. But, I also know that our network of helpers here is strong and that network came through. Thank you to Aunt Debbie for going to the oncologist with me on Tuesday and staying with Ryan & Lucy last night. I couldn’t be more grateful. The best part is that I know there are many others who were ready to step in. We have the best family and friends.

So here I am. The did another CT scan yesterday and I read the report, but haven’t reviewed it with a doctor yet. The opacities in my lungs are a lot worse now than they were on Monday. They did tell me yesterday that I have pneumonia. Again. There may also be a couple of other things going on. Hopefully I’m in the right place to figure it out.

Dan is flying home today. I’m hoping I can go home soon and have the energy to make my own French toast. And I may not leave my house again until June!!

Boring Update

I’ve seen significant improvement in my leg over the last 2 weeks so I’ve ditched the cane inside and outside the house!! That means no oxygen or cane! Plus I’ve been wearing my wig so hopefully random people don’t know there is anything wrong. I haven’t been stopped and prayed over recently in the grocery store so I’d say that’s progress!! 

I’ve noticed people stopping themselves mid-complaint to say they’re sorry to be complaining about something normal to me. Does that mean I’m not allowed to complain about normal stuff? Because I had a head cold last week that was no fun so I’d like to complain about it!! Seriously, though, life goes on and while this situation does bring some perspective, I still want to hear about normal stuff…the good and the bad. I hope most people aren’t filtering themselves as I’m certainly not. 

I successfully navigated my first work trip since this all began a couple weeks ago, but it was a car trip. Since that went well, I’m headed to Memphis tomorrow on an airplane. Hopefully I’m ready. It does feel normal to be going back to my 2nd home (and to my secret life, according to Tyler). I did decide I should check my bag…that may be my only concession. I may be confined to the couch for a bit when I get home to recover.

Side effects this cycle seemed even milder than the last 2 cycles, which were pretty mild. But, maybe the cold masked the symptoms? Not sure, but generally, I’m feeling good. Woot woot!

Enhertu & Scan Results

I met with my oncologist today to review the results from my CT scan last week. Overall, the results were positive as there was no change since my scan in August which means STABLE!!  This was the goal. My next scan is in 3 months and I’m told that no change on that scan would be good news too. I selfishly want to see shrinkage, but that might not be reality yet. Patience is hard. My oncologist is focused on my whole self and is pointing to the lack of oxygen usage as another sign that Enhertu is doing what we want. 

My 3rd infusion was also today and that went smoothly. Side effects continue to be limited to GI unrest.  Lovely, right?  Hopefully I can address that by being more proactive with meds. I have a tendency to take something when it is too late.

The hip is recovering well, but I’m having pain in my knee, ankle and toes that is being attributed to arthritis. Sara thinks the new hip leg might be slightly longer so I’ll need to try an insert in my other leg too. I’m trying out a cream that just moved from prescription to over the counter for the arthritis. If that doesn’t work, I have a script for a non-steroid anti-inflammatory. It can also upset the stomach so I’m trying to avoid that. Overall, I don’t like taking anything. But, I have options which is good. Keep trying until you find what works…I guess I need to be ok with that for chemo too.

I got a strong dose of steroids today with chemo, but want to avoid them as much as possible hoping my moon face will go away. I’ve been off daily steroids for a week now.  I can hide the cheeks if I take the pic from the right angle :) I’m getting used to the wig and feel less self conscious with it, but I’d love to find something short and funky. My eyebrows and eyelashes are back…and my mustache!! Ugh!  I also have fuzz on my head, but it is nowhere near covered. And the areas that were radiated are seriously lacking. Maybe I’ll have enough to ditch the wig and hats in the spring?

I’m getting around more…I’m slow and get tied fast, but I’m there! Akron,  Ithaca, Pittsburgh and I’m about to book my first work trip to Memphis which I think will be ok if I bring the bare minimum, keep the weight of my backpack/luggage light and put myself in a position not to need to run to catch a plane. I also stopped using the scooter at the grocery store a couple weeks ago so I’m back to shopping with a cart. Thank goodness as those scooters are annoying. In the couple of months I used them, I only hit one person :) Oops!

Overall, I’m improving and trying to be ok with slow progress as that’s better than no progress. Reconciling how normal I feel in my head with my physical limitations is hard. My body had better catch up soon because there are adventures to be had. And I plan on enjoying all my minutes.