Got my candy back

Great news, I get to restart my truqap at the full dose. Woot woot.

Boston

We were in Boston today for my pulmonary consult. I’m happy to be home as we are not city people!! The traffic is nuts, but we tried to make the best of it.

I am still feeling decent so I left Dan in the hotel on Saturday and met a co-worker at a huge mall. I did take a few breaks, but I walked that whole mall. Yay!!

The next day Dan booked an hour walking tour of Fenway stadium. Guess how many stairs there are in a stadium built in 1912?? Yeah, that was a lot and I may have been bringing up the rear of the tour, but I got through the whole thing and still had energy left for Quincy market. AND…I left Dan in the hotel again so I could run to the outlet mall. Of course the 2 stores I wanted to check out were on opposite ends, but I did it. Yes, I’m proud of myself.

Today we were at Mass General really early for my CT scan. Luckily the doctor took us a couple of hours early or we would still be in the car. Nothing exciting happened with the visit. Essentially she says I can come off the steroids from her perspective, but she wants me to consult with an endocrinologist before I fully wean as the body can stop making cortisol when you are on steroids for a long time. That seems fair. She’s also switching me to a different form of cellcept which is what is replacing the steroid as we suspect some of my GI issues are from the cellcept since it hasn’t stopped even with my break in treatment. Hopefully my breathing will continue to improve and I’ll start weaning off that too. I’d like to keep chipping away at these side effects and have to take less medicine. Lately it seems like I keep having to take more to counteract another med. I feel like the old lady who swallowed the fly.

My oncologist was out of the office today and they only had authorization to restart my medicine at a lower dose so I’m waiting for tomorrow to see if I can start at the full dose. I’m not giving up that fight.

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.