It Was the Jelly Beans!!

I’m in fight mode. Spittin’ mad. And likely to use words that mom wouldn’t approve of.

Let me back up. I started truqap and began week 4 yesterday. This med is pills take twice/day for 4 days and then 3 days off. No infusion. About 1.5 weeks ago I started to notice I was breathing better and weaned myself off oxygen. Things continued to improve from a breathing perspective. It was odd because my breathing had actually gotten worse during my month break in treatment. That had me freaked out. But, I had always pushed back on my doctor on this pneumonitis thing with scar tissue in my lungs because my breathing was starting to become a problem before I started treatment. I’ve always suspected it was disease.  They insisted the evidence said otherwise.

This is not a miraculous recovery, but my breathing is at least 50% improved. I can walk and talk at the same time. I’m experiencing lack of appetite plus continued stomach issues, but I’m experimenting with things that are helping. I have been tired and lack stamina due to lack of food.  But overall, I’m feeling much better than I was.

Another side effect of truqap is increased glucose and I’m still on 5mg of steroids which also increases glucose. I’ve been testing high at home, but nothing crazy. I tested this morning before eating anything and it was 101. Under 110 is good. Last week I was 122-166. I had a small bowl of multi-grain Cheerios and 1/2 cup of coffee with creamer after I tested this morning. And at 2pm at my clinic visit, I was at 377. Crap. They tested me again 1.5 hours later and I was at 319.  So now I have to take a break from truqap plus take 2 meds to get the glucose under control. And, when I start again, they want to reduce my dose. No. Just no. They reduced my dose on the last med and I had a slow decline including increased tumor markers until I had progression. So don’t tell me that less medicine is just as effective. How could it be?

I tested myself when I finally got home about 2.5 hours after the first test and I was at 225. Still too high, but at least I know my meter works.

They also said the jelly beans I ate yesterday didn’t cause this especially since I tested low this morning. But I still blame them. I ate a lot. Darn Candy!! It’s hard to deny myself something I want on the days my stomach is good. And I have Cadbury cream eggs waiting for me. Calling my name. Infiltrating my dreams. Ugh, I love them so much. I might need my dad to visit and eat all my candy.

I just need 1 medication to work and right now, I feel better than I have in a long time and my tumor markers went down from 120 to 90 since I’ve been on this. And, I have eyebrows.  Why can’t I have a win and keep it?

I cried. Couldn’t help it. I also told them that I’d rather have diabetes and be able to breathe than go back to how I was before. 

Ok, pity party over. I’m going to lay off the jelly beans, do what they told me to do and hopefully they’ll let me go back on the full dose Monday.

Liver Blasting

The last 2 weeks has been eventful with my treatment. On 3/9 I had my first Faslodex injections plus the mapping for the liver procedure. Then on Monday 3/16, I started taking the truqap pills and yesterday, 3/19, was the actual liver procedure where they planted radiation seeds. Yup, I finally got my space invaders to attack my obstinate liver. I guess it was the Y90 procedure I’ve seen others talk about on the cancer boards.

I’ve had some of the same GI issues so I’m not sure if that means it will continue on these meds, or it of is leftover, or if it is just the result of everything I’m taking. The good news is it is manageable and only once or twice each day.

The procedure has made me even more tired than usual, but I’m radioactive for 3 days so I don’t have much to do anyway. The naps are good!!

I get my next set of injections next week. I may take them up on 2 nurses doing th em at the same time as they sting!!

I’m hopeful this change will work. I kinda have eyebrows and see a dark haze on my head. Woot woot!

Cancer swag?

I received the pills for my new treatment today and it came with swag. It find that strange and somewhat concerning that they also sent anti-diarrheal medication. Didn’t I just leave a treatment because that side effect was so incredibly bad? But, back to the swag… I guess I’m supposed to wander around with a medication branded purple bag and a weird water bottle while wearing their socks? The pill organizer might be helpful. Maybe. I think I’m too lazy to actually set it up weekly.

The good news is that I have the pills now and can start the medication next week. I can’t start now because I have to test my glucose on day 3 and they don’t want that to fall on the weekend.

There are also injections that go along with the pills. The 1st 3 doses are every other week and then I go down to once/month. I asked if I could give myself the injection, but I now understand why the answer was no after experiencing the first round. They are 2 inter muscular injections that go in slow. It is not pleasant and the sites were sore for a couple days.

Unfortunately after the injections, I went for liver mapping. That wasn’t horrible, but that twilight sedation really makes you tired and the spot where they went in is still sore. Not sure I want to go back for the real procedure next week!! But I will because I want those space invaders to show my liver who is boss.

At this point, it has been over a month without treatment and my eyebrows are starting to grow back. I’m in the smudgy/dirty phase and my glue on eyebrows no longer stick. Such problems!

I hope the growth continues and is fast as you really do look sicker without eyebrows.

I really hope I get to be one of the people who doesn’t have nad side effects with this treatment. Please!!

Hope

Things happen for a reason.  And I am grateful.

I know I’ve been quiet lately and that’s mostly because I’m exhausted. The side effects of the treatment I’ve been on for two plus years have built up and have become intolerable. But, you can’t leave a treatment behind that is working so it’s been a challenge.

I had my quarterly scans a couple of weeks ago and it showed my liver is not being compliant. That is a reason to change treatment which makes me happy. We’re doing 2 things.

I’m finally getting the space invaders I asked for last year to attack my liver. Remember when I was told you can pull the weeds you can see but there are always more? Hrmpf. I knew an attack was necessary!! So I’ll be going in Monday for liver mapping and then assuming all goes well, I’ll have radiation seeds 2 weeks later. 

They did another blood biopsy for additional information and I just got those results back today. I am also eligible for a targeted treatment called truqap that is a pill and a monthly injection after more frequent injections in the beginning. It didn’t have FDA approval on 2023 when I started my most recent treatment and all signs point to trying it now with the liver radiation. That means no more IV chemo!! Assuming the treatment is effective. And my hair could grow back which means I have hope of nose hair… I miss nose hair the most!

So no chemo Thursday and I guess I can’t be upset that I didn’t have chemo last week because of a delayed insurance approval as that might have messed this new plan up.

I have hope that my quality of life will improve and hope is a powerful thing.

Change

Change is coming and I think it is necessary. I’ve been on this treatment for over 2 years and already reduced my dose because the side effects had become toxic. Unfortunately I think the toxicity has built up again.

I’m grateful for treatment and the opportunity to live. Truly, I am. But this is awful. Aliens have taken over my insides, stirred them all up and are spitting me out. I can’t even keep water down. I tell myself that it is only a few days every 3 weeks, but that’s not working anymore. There has to be another option.

I want to eat and have energy. Maybe it is time for a week of vacation just to sleep.

My 2 Favorite Words

I had scans on 11/17/25 and the results posted the next day. My own interpretation of what I read is that nothing had changed since the last scans, but I decided to be patient and wait on the opinion of someone with a medical degree. That happened yesterday and I’m excited to still be stable as well as unremarkable!!

I’ve now been on Trodelvy for 2 full years which is excellent to be on the same line of treatment that long. It knocks me down and the stomach issues continue, but nothing I can’t handle to keep enjoying all of my minutes.

I talked to the Boston team and am increasing cellcept again tomorrow which is the drug intended to replace the steroid. If my labs are good Monday, I’ll start stepping the steroid down. So I’m going to be good…sleep well, eat well and wear my mask. Stack the deck towards healthy.

And now, to focus on a fantastic meal with family on Thursday and an even better dessert! I might need to break into the pie a day early.

IVIG

One thing that the Boston doctor found with those 13 vials of blood is that my immunoglobulins are low. So she suggested IVIG which is basically an infusion of antibodies which will help me avoid getting sick or make any sickness less severe. Unfortunately I can’t get the infusion at the same time as chemo which meant I was there last Tuesday during my off week. Bummer. And they always drip the first infusion of anything new really slow so I was there for 6 hours. I got a lot of work done, but it isn’t fun sitting in that chair that long. The next one should be a lot shorter.

I increased the dosage of the cellcept intended to replace the steroid a couple of weeks ago and so far that is going fine. I haven’t started to step down the steroid yet. Hopefully that will start soon so I can start the process of returning to myself in the mirror.

There isn’t much else to share right now. I have a virtual appointment with the Boston steam on the 12th so I’m hoping they might have another suggestion for me. 

Other than that. Things are boring. And that’s a good thing.