Nov 2022 results of trial med

Hello everyone, I just got back from Mayo. This appt was the important one with my scans that would tell me if this trial I have been on, was working. I also had an eye doc visit and an appt with an ENT. I was most stressed about the scans. It’s been 4 months that I have been on this trial now, and these scans were going to be the first to really tell us if it was working. I have been hoping and praying that this was my miracle drug. I’ve struggled a lot on this med - I am extremely tired, my body is so sore and aches like I’m 100yrs old, not to mention very dry. I am like a snake shedding a layer of skin. Literally! After the very itchy skin, came the dryness. I’ve lost all of my hair, lashes and brows. My eyes are dry and my vision is worse. Sometimes my nose is super dry also. After dealing with these issues for 3(actually 4, but 3 with side effects)months, all I wanted was to hear something good came of it. I first had a blood draw in the oncology department. I wore my glasses and my hair. Once there I saw so many patients that were bald or had a hat/scarf on over their bald head. I regretted not wearing just a hat because it’s much more comfortable!

After that I went right over to my scans. I had a scan of my sinuses, my neck, my chest, abdomen and pelvis. I think this was the longest I’ve been in the CT room. Usually I’m in and out in under ten minutes! But there was a lot of areas to be looked at this time around. The nurse in the room with me was this very nice guy and he helped to speed along the process. At one point I asked to text my Mom to give her a heads up that it'll be a bit longer then I thought. He joked and said, 'Oh I thought you wanted it to take a selfie with me!' Haha! So after I text my Mom, I made him take a selfie with me!

After the scans I had time to run and meet my Mom for breakfast at a cute restaurant called Benedict’s. We had just enough time to order and eat before we needed to run off to my vision test. My eyes have gotten worse, especially over the last month. I’ve had astigmatism for years but it wasn’t bad and I wore my glasses like 4 times a year. Basically if I liked how they looked with my outfit. Haha. Well now I find myself wearing them many times a week. Things are blurry now that aren’t too far away from me. He checked my eyes, did several tests, including dilating my eyes again! Luckily this time I had my Mom with me who could help me get around afterwards. Last time I was able to go back to the room and sleep, but unfortunately this time I had hours of appointments to get to still! He said my eyes looked healthy but that I did need to get a new prescription for my glasses once I got home. So I am unsure if this is a side effect to the drug or not? Maybe just getting old..

My Mom and I then walked back to the oncology floor and found some comfy chairs to rest in while we waited for my appt that had the answers to my scans. We had about 50 minutes. Not enough time to walk back to the room and relax for very long. With my eyes barely working and being on the go for a few hours now, I had no problem falling asleep while we waited!

I met with one of my oncologists who has been watching over me while on this trial. He was pulling up scans and showing us different pictures, it’s hard for us to really tell what we are looking at, some pictures seemed good and others not. I think he was trying to stall a bit but eventually he broke the news to us that areas are still growing. Ugh. Of course, why would we hear something good? It’s just so damn frustrating because everything has been a trial and error. For so many yrs! Let’s see if this works, nope, okay let’s try this. With a million side effects to go along with it. I wish this cancer just had a chemo that it responded to. I guess I’m lucky that it is slow growing. But it’s like I’m slowly awaiting my death. I’m here for my kids thank god, but for how much longer? I do feel my breathing is getting a little more difficult. Is that from this trial or is that a side effect to the cancer growing in my lungs? Up to this point, I had no breathing issues. And then I wonder, if I weren’t on any meds, would it still be growing just as slowly? Then I could at least be feeling good… but do we want to risk it to find out? So many thoughts, so many questions.

After this oncologist talked with my original oncologist, Dr Robinson, they decided since the cancer is growing slowly on this med, we will give it two more months, then have scans again. And unless some miracle happens🙄, we will end this trial and try something else. We do have one more IV chemo to try, but after that….. idk. I then got my second round of blood, got my meds for the month, and was done w appts for the day. We ordered food in both nights as I was too tired to go sit in a restaurant.

The next morning I had my ENT appointment! I was looking forward to this because I’ve had sinus issues for many yrs and it recently got even worse. As in, my nose is constantly running. I need to blow it every ten minutes. It sometimes smells in my nose. My taste and smell are not well because of it. This all started 8 yrs ago when my first surgery was done through my nose. And yrs of having radiation done to that side of my face has made it even worse. I don’t know what I was hoping for, some surgery to cure all the issues? Turns out there isn’t much he can do. He had a camera in my nose, cleaned it out(that was fun😵‍💫), and took a swab to test for bacteria. He put me on a med for a month to see if it helps at all and gave me a rinse to use daily. I also asked him about my ear which I had not brought up when I made the appointment. I told him that I can’t hear out of it, that I have a tube in it, but I’ve been told that because of radiation, it is so swelled up in my ear, it’s impossible to get to. So, he looked in my ear, and believes it is closed up! Like, skin grew to block it completely! Ayyye. So now when I’m back in a month to get my meds, I will be getting a scan of my ear so he can see what’s going on in there. I had asked if a hearing aid would help me at all, but he said right now, no. I wouldn’t mind having one to hear better when out at a restaurant, or sporting event.. when a place is loud, it’s much harder for me to hear anything. Even at work when blow dryers are going - which is often since we have gotten more stylists working!

So that is that. My Mom and I headed home. Back in a month. Then back in the beginning of January and hopefully after that I will get a little break from going there, or being on any meds until I start the new one. I’m mad, but I’m also numb to the news. I’m also pretty used to not hearing good news, so why would it be any different this time? Gotta keep chugging along on this med for two more months. Gotta keep trying for my kids. My kids, the only reason I keep going and haven’t gave up yet.