August 2022 update! New trial med!

 Hello! 

Where do I even begin? I think I’ve been to Mayo 4 times since I’ve last updated you all! We have lots to catch up on!

 I finally had the tooth pulled that I thought was causing all of the nerve pain and unfortunately it did not fix the problem. I found out that nerve pain can come and go, and my trigeminal nerve has been affected during so many surgeries that I guess it decided to bring some pain back! 😞 So I am now on a med that helps with nerve pain, (which I had been on many years ago) and thankfully it seems to be doing it’s job. Instead of getting the nerve pain many times in an hour, I get it a couple times each day. That is much easier to handle. (And since I’ve wrote this part of the blog, it happens only once a day now!)

    Kent came with me on my trip in April and we had a nice time! He had not been to Mayo with me yet so it was fun to show him around. And take him to our favorite eating places! Haha 

        I had an echocardiogram done at this appointment. I had told my Doc previously that it felt like my heart was beating harder lately, so he set up a test to check it out. Luckily everything looked good! There is one area that isn’t pumping as well as it should be, but the doc said it’s not anything to be concerned about and for being on so many chemotherapy’s in eight years, my heart looks good.

     Unfortunately the higher dose of chemo I had been on, did not help with my lungs.  My doctor said that we will give it two more months, and if nothing changes it will be time to start a new med. There was talk about possibly doing a trial med and he had an IV chemo option available. So I wasn’t feeling quite hopeless yet, just frustrated. 

     Two months later, at the end of June, my Mom and I went back down. It was 4 days of appts! It is usually 3 days/2 nights so that was different but they did add in a meeting with another oncologist who would explain this trial to me more, and then I could decide if I was interested in doing it. 

     Well 4 days of appts turned into 5! We got a lot of eating and walking in! Haha. My normal oncologist wanted to add a lung biopsy because the cancer is still growing, he wanted to make sure that we are dealing with the same kind of cancer that’s in my head. 5 years ago when I had a lung biopsy done, it was the same kind. But things can change over time.

         I decided to do the trial, so they needed to add a few more tests in for that too;  extra blood tests, an electrogram of my heart and an eye appointment. We could not get the eye appointment into this trip but they said when I come back to start the trial, they will add the eye test in just before starting it. 

   The trial has only around 200 people in it. 15 of those are at Mayo. I figured I better try this since the option is available, because it won’t always be there. If it doesn’t work, I can move on to the IV chemo we talked about.  I didn’t realize how lucky I was to get into this trial, though!  The more I looked into it, the more I saw that it wasn’t so easy to be a candidate for it. There is a lot of criteria that you need to meet - like, having only been on so many chemos, heart is healthy, cancer isn’t growing in certain areas, etc. And I was lucky my oncologist, Dr Robinson, found this trial for me and got the ball rolling on it!  It’s in the second phase, which means they figured out the correct dosing and you don’t need to be looked over as often - the first phase, every 2 weeks you had an appointment, but now it’s every 4 weeks. So every month I’ll go down and get my vitals taken, blood drawn and get my new batch of meds. Some months they will add in scans, a heart or eye test, etc. Being so new, they don’t have a list of side effects to give you so that’s a bit nerve wracking. They did talk nausea often, so a number of people in the first phase must have had an issue with that. 

        

       The lung biopsy went well, this was the second one that I’ve done, so I knew what to expect. You are awake but given meds to keep you calm. I was laying on my side, on a CT table. (I tried to get them to take a picture of me laying there w a biopsy needle in my back, but they wouldn’t.😆)  One of the worst parts is getting the lidocaine shot. It stings and burns as the liquid enters your body. Then, you can feel the biopsy needle once it’s in place, between two ribs, biting at a chunk of lung. Luckily it’s a quick procedure. The trial company likes samples if anyone is willing to give them some and since I was already getting the procedure, I told them to grab more tissue for trial people too. I needed to keep the area bandaged and no submerging in water for a week.  Last time it took a week or two to feel good breathing in, but this time I felt fine about 2 days later! Which was nice because I had all of my family in town for the 4th of July week!

(See the little sticker on the mid left of my back.)

        My appt coordinator said we will need you back in a few weeks to start the trial. It was now July 1 and I had said, ‘Like towards the end of July?’ And she said more like the middle. Wow! That’ll be here in no time! It took her a week to get back to me on the appointment date, and that was a bit annoying! She called me on a Friday evening and said, ‘We want you here next Friday.’ Geeze! That gives me little time to move my clients, etc! I would have the eye test on that Friday, and then on Monday I would start the trial med. It wasn’t very convenient that the appts had a weekend in between them. I was a bit annoyed about this too. But I decided to make the best of it, being I’ve never had a full day in Rochester without appts. And now I get two! Plus the weather was looking good! 

  

    My friend Maryjo came with me and on Friday she stayed in the room and worked while I went to the eye appointment.  Well they ended up doing all kinds of eye tests including dilating my eyes! I had no idea this was happening and I did not have sunglasses with me so they gave me a pair of disposable sunglasses to wear on the walk back to my hotel!  I couldn’t believe how blind I was! I could not read a single thing on my phone. I laughed the entire walk back and then had nothing to do but nap since I couldn’t see enough to read or do anything.  Saturday we relaxed, shopped and ate good food. 🙃 Sunday we drove 45min North and met my cousin Ali at a river and did a float! It was great! The weather was beautiful and we had a very nice time. (Minus the fact that the float is estimated to be about 3 hours and it took us close to 5! It all depends on the water level, etc.)

       Monday I was back at the hospital early for a blood draw and then met with another oncologist who went over more info on the trial. After that I went to the oncology unit and they put me in a quiet little room, got an IV in because they were going to be taking a lot of blood, gave me the trial med which is four pills (here goes nothin!) and then I needed to sit there for about two hours to be watched over and get one more blood draw. After that I was free to head home. They did not want me to drive that day, because they were unsure what side effects I may have. Maryjo was a good sport doing the whole way home! 

     I am on my fourth week of taking the med, and I’m happy to say that I feel better on this one than I did on my last chemo! The main symptom that I get is fatigue. Some days I am extremely tired. After work I usually end up sleeping all evening... I was nauseous one day but took the med they gave me and felt pretty normal fast. Luckily I have not dealt with that again. I did have restless arms and legs one day and that was miserable! I couldn’t hold my phone or a book or even get comfortable to take a nap. The only thing I did differently that day was I got a big, sugary coffee  in the afternoon about an hour before the restless arms started. I am not sure if that had anything to do with it, but I have not had a big afternoon coffee since. Unless it’s decaf! 

       It has been nice losing some symptoms from my previous med- My hair is coming in dark again, if you remember before, it was coming in white! I also have a bit of a tan now which is amazing because I have had zero color on my skin for two years! I’ve felt very ghostly with white hair and skin.  Makeup helped to add color to my face, and I was thankful for that. The swelling around  my right eye that I was getting from the chemo is also gone. These three things help me feel a bit more ‘normal’ and healthy! I still have joint pain, it’s been a about six weeks straight without a break, but the last couple days it seems a lot better so I am hoping that means it is on its way out!  For the past week I have been super itchy everywhere. I didn’t think much of it because that happens sometimes on my painkiller. Well the past 4 days I have been losing a ton of hair!  Something is going on with my skin and hair..😵‍💫 I just hope this is a phase and that it’ll eventually stop happening and I won’t lose all of my hair. 

   I headed back to Mayo this past Sunday with my Mom for appts on Monday. Starting with a blood draw at 6:50 AM! My vitals and blood came back good which is great since I am feeling decent on this med! At this appointment, like the last, I get a ton of blood taken, then I take my med, then sit for 2 hours and get one last blood draw.  All of this blood goes to the people running the trial. (See the syringe in picture below? They take about 4-5 of those every time!)  I then got a new batch of meds (since I can’t just pick it up from our pharmacy) for the next month and off we went!  

        I will get scans done at my appts next month.   I get anxious thinking about it because right now I don’t know if it is working or not. But I can be hopeful that it is! The unknown gives me something to be hopeful for, and that is a great feeling. I like to tell myself that maybe this trial is the miracle that we have all been praying for. ✨