Tag Archives: cabometyx

Side effects and More

21 Wednesday Aug 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , , ,

SIDE EFFECTS AND THEN SOME

Day 15

August 21, 2024

So, side effects have come to visit. I’ll start by saying no Hand and foot syndrome yet. Thank God. I do have nausea, general stomach pain, diarrhea, immense fatigue, and loss of appetite. These effects started happening last Wednesday, when I was nauseated on the drives to and from my uncle’s funeral, and they aren’t showing any signs of going away. The diarrhea has just been small amounts at a time, but it’s been all day and all night for the past two days. I might possibly be a little better today, but it’s too soon to tell.

The fatigue, I called it immense, because it seems even worse than what I had before. Yesterday, for instance, I went back to bed around 9 AM and slept until around 2 PM or so. I stayed up late watching the Democratic convention, but it was a struggle. I felt exhausted and ready for bed by 6 PM. It’s just after 9 now, and I feel ready to go to sleep, but I’m not giving in right now.

The loss of appetite is about the same as the first round of chemo with the higher dose of the meds. Even when I do eat, I eat tiny amounts of food. Maybe I will have a smoothie and drink an ensure. I can’t eat a full meal these days. I’ve now lost just over 15 pounds since this all started. I was overweight, so people don’t notice the loss, or nobody is saying they notice it. It’s got to be the appetite thing, because otherwise, why would a woman who isn’t exercising be losing so much weight in just two months. I’m still at the stage where I’m glad of the weight loss, even though I probably shouldn’t be glad. It doesn’t mean I’m healthy or anything cool like that. I feel like I’m not going to worry about it until none of my clothes fit or people start commenting about me losing weight.

I had a wonderful surprise this past Monday. A dear old friend I haven’t seen in at least 15 years and to whom I haven’t spoken in 3 and a half years, called me yesterday. We talked for a long time, catching up. It was great to hear from him and I’m hoping he may come for a visit someday. I’d let him know I was back in California, but somehow, he didn’t remember that and still thought I was in Colorado. Typical in many ways. It was a happy break during this time.

A week from tomorrow I go back to see Dr. Z. I have to get lab work done before that of course. I can’t remember if I explained why the lab work earlier in this journey, so I’ll mention it here. The big thing is to check my white and red blood cell counts. Chemo that destroys bad cells also destroys good cells, and my blood cell counts can change a little or drastically. They also check for a lot of other things, and in particular, they check for my kidney function. This is vital since I only have the one kidney now. I’m hoping we can get a CT scan sometime in September, so we can find out if the chemo is having an effect on the cancer at all. Still, I take my little pill every day, and I hope.

I’ve said before that this is a one day at a time kind of thing. It’s also a bit of a roller coaster, with my mood creeping up those steep hills, say after an unexpected phone call, and then the mood plunging back down to the bottom as the side effects take hold and don’t seem to want to let go. Today, I just feel tired, so tired. I’m hoping I can make it through tonight’s Convention speeches. Tonight is Secretary Pete and governor Walz, and I’m excited to hear them both. Right this minute however, I feel like I’d just like to go to bed and sleep for a very long time.

Treatment Days, 1-3

20 Thursday Jun 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , , , ,

Treatment Days

Day 1:

June 18, 2024

I took the first chemo pill around 8 AM. With me being a morning person, that was probably way too late. Doug was in my bedroom with the two dogs. I was in my bathroom, cup of water ready at hand. I’ve kept the pill bottle in a special place and in its original box. Taking a deep breath, I opened the bottle, took out a pill, popped it in my mouth. And grabbed the water to swallow it down.

Then, I stood there, waiting. It seemed the whole world was holding its breath. Were the side effects going to burst out upon me, attacking at will? Would I feel anything? Notice anything? Nope, nothing. No weird feelings, no blasts of illness. No sirens and flashing lights. Okay, is that all there is? Leaving the bathroom, I decided to go about my day.

And that’s how it went, all day long. After an hour I ate breakfast, deciding to take the next pill a little earlier, gradually working it up until I was taking it closer to seven than to eight, because I’m always up with my dog by seven in the morning. I mean, I like breakfast and don’t want to eat it so late!

I felt fine all day, hyper aware of every single thing about my body, but all was well. The only thing was a little bit of diarrhea that night near bedtime. It was just one occurrence, nothing more. I slept like a baby that night, after not sleeping much at all the night before. Hey, maybe this won’t be so bad.

Day 2:

June 19, 2024

I moved the pill taking time up a little, as I’d planned the day before. Not by much. I understand about taking it at the same time every day. So, I took the pill and waited. I did not expect blasts, lights explosions of side effects or anything this time. But this time, I developed a headache. Not a bad headache, but a headache. Again, hyper aware of every single thing about my body. The headache wasn’t much. My watch has a heart rate app, so I checked it and my rate was pretty high. That worried me, so I laid down for a couple hours to rest, and everything calmed down. No other problems the rest of the day.

I’m being careful to eat small meals, drink plenty of water, moisturize hands and feet. I’m follow toilet flushing and disinfectant wipe protocol to the letter. Day 2, so far so good.

Day 3:

June 20, 2024

Took pill three a little earlier again this morning. Think I have it at a good time for every day. I’m going to set up a daily reminder on my Alexa device, so I never get distracted and forget to take this. A little dizziness and general weird feeling this morning, but it’s settling down.

I’m wondering if I’m just having a super easy time with these meds, or if they just aren’t doing anything at all, or probably more likely, if it will take a few days for the meds to really sink into my system, to accumulate in my blood and start attacking all those good and bad fast-growing cells. Will I then start having more side effects? They call these meds, chemo pills, so how can I have no side effects to speak of? It’s weird. I keep waiting for the axe to fall.

Approximately four hours later.

Well, now I’m having side effects! Why did I have to wonder why I wasn’t having them? Still not severe or debilitating, but … Well, nausea is the main thing today. Not vomiting, just feeling queasy. Not even enough to take anti-nausea medicine. Just enough to feel it and feel bad overall. My body feels like it wants to add to that problem in other but somewhat similar ways, but so far, not. Didn’t sleep much last night, and I’d love to go to bed, but I’m trying to stay up all day today. We’ll see. If this gets worse, I will go lie down, closer to the bathroom, and keeping my stomach quiet and resting.

Hours later again. Felt nauseated, or is it nauseous, most of the day. Have not thrown up or had any other unpleasant bodily uncomfortable actions. But I have felt like all that wanted to happen all day. Feeling tired, low and not very well right now. I’m going to eat some mashed potatoes, have more water, or maybe a glass of milk and then possibly go rest. If this is me on the third day, what will the fourth day bring?

NURSE LAURA, TREATMENT BEGINS

17 Monday Jun 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , , ,

NURSE LAURA: TREATMENT BEGINS

June 17, 2024

Today was my appointment with nurse Laura, a nurse practitioner in Dr. Z’s office. Per their request, I bought all the meds in, cancer and nausea and vomiting meds. Upon first entering, my blood pressure was a little high. I reminded them that last week’s was normal, and that I’m usually normal, but kinda anxious and agitated about cancer. They took the pressure again at the end of the appointment, and it was back in normal ranges. I need to dig out my talking blood pressure machine, because high blood pressure is a potential side effect of the meds, so I need to keep an eye on it.

Laura went over things in great detail. I was happy she gave me such parameters, so I can tell if something is beyond what could be considered normal. She said things such as:

“If you’re tired and take a nap and feel better, that’s fine. But if you are so exhausted you feel you can’t get out of bed, call us immediately.”

She talked a lot about mouth sores, warning me not to use any mouth wash that has alcohol, which many name brands do. She actually recommended mixing a teaspoon of baking soda in a cup of water and drinking that to help the mouth sores and to keep my mouth hydrated.

She also talked about the hand and foot side effect, something that can cause pain and redness in both. Apparently, it can become quite serious, so she recommends moisturizing the hell out of both hands and feet at least twice a day.

She talked and gave recs for vomiting, diarrhea or constipation, but I’ll spare you all the details on that. I have meds for nausea and vomiting, and she recommended what to take for the other two.

It’s important to know that these pills are basically chemotherapy pills. They are formulated differently from typical chemo IV meds, and this does work on kidney cancer. However, it does attack fast growing cells, and it can and does attack good cells along with bad cells. So, as with traditional chemo, I have to be careful about infection. She recommended masking up when I go out and frequent hand washing while at home. Also, due to the ingredients in the meds, she said to flush the toilet twice after I relieve myself and to use a bleach/disinfectant wipe on the seat and lid.

I tend to have stomach pain not quite frequently, but often enough, due to what I eat or drink, and I did mention this to Laura. She just said that I know my body, my baseline of how I generally feel, and if anything feels worse, or just not right, call them.

The oncology office had a direct line during normal office hours, so if I am concerned about something happening with these meds, a side effect that worries me, not feeling well, whatever associated with taking these chemo meds, I don’t have to go through the main call center, but I can reach Dr. Z’s office right away. This was a huge comfort. I mean, if you’re feeling ill, it’s no fun to wait on hold for a long time, or wait for call backs. Of course, if it’s after normal office hours, I still get the call center.

I had to have labs before starting the meds. Everything was within normal ranges except one kidney function test. However, considering I have only one kidney, that’s probably to be expected. If I don’t hear from anyone in the office today, I will start the meds tomorrow morning.

I will have a video appointment with nurse Laura a week from tomorrow, and then I have an in-person appointment with Dr. Z two weeks from tomorrow. It was a huge relief to know they are monitoring and following up so much, particularly during this first month. I will have to have labs again when the first month is over, and eventually CT scans and continued labs and follow up.

I meant to ask Laura about mental health support. I’ve been feeling fine, emotionally, since my venting last week. However, I expect there will be ups and downs ahead, particularly if the meds leave me feeling ill. It might be good to find online peer support or something. I’ll just have to see.

So, that’s the scoop. I start my chemo pills tomorrow. For better or for worse, Here I go.!