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.

Oct 2022- 3 months into trial

 

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. ✨

Scans January 2022

Hi everyone! I’ve been slacking on updating my blog lately as I felt I didn’t have a lot to say. But I figured I owe you all an update and have some new news. 

After my good chest scan last March where we heard that spots were shrinking, I continued to be very good about taking my chemo. I’d like to say that in the past 11 months I’ve only skipped a couple doses total. 

My scans in June came back good, the head tumors were still shrinking from radiation and the chest scan was great also, the chemo was still shrinking the cancer in my lungs. This was great news because it felt like we had both areas under control for the first time! 

I continued on the same dose of meds and in October my scans were so so. The head scans were still great. The lung scans, a few spots here and there had a tiny bit of growth. But we weren’t worried about it yet and that could even be the results of different people reading the scans. 

We decided my scans in January would be done at home since we were only doing the lung scan this time around. We loved the idea of that, being we have no clue what kind of weather we could be dealing w in January!  I was in and out of our hospital in ten minutes. Crazy how such a big production usually - driving 6hrs to Mayo and staying a few nights - could be so quick!  A day or so later, my Portage portal had results on it and from what I could understand, they didn’t sound great. BUT, I also realized that they were comparing this scan to a scan I had done here in 2018 and of course the progression is a lot worse in my lungs now then it was back then. So I tried my best not to freak out and wait to hear from my Mayo docs. After a few weeks of waiting, I found out Mayo hadn’t received the scan pics yet, which could have been my fault. I might not have told Portage to send them, and just expected that they would. After getting all of that straightened out my Mayo oncologist, Dr Robinson, wanted to set up a zoom appt with me. So another week or so we waited. By this point, it’s been a month! I’m used to hearing results the same day! I tried my best to push it out of my mind but it was a bit of torture waiting. 

The day finally came to talk w Doc Robinson and it was nice to see his face again! My last appt at Mayo, I saw his PA, not him. AND, this was the first time I saw him without a mask on. Haha. Its been almost 2 years and I saw his smile for the first time. Even though the scans at home were compared to an old one, I had a feeling I wasn’t gonna hear great news.  And I was right, we had more growth this time around then we have had in a while… not every spot grew, but some grew more then others and there are a few new areas that popped up too. He did explain though that it is a little harder to base his judgment off these scans because the pictures are a little different then the ones done at Mayo. It’s a different brand machine which takes different picture slices. 

He doesn’t want me to continue on this dose of chemo and let things get out of control so he would like me to double the dose. If you remember(and it’s okay if you don’t, haha), I was on this bigger dose back when I started on this chemo and it was very hard on me. Besides the symptoms that I still deal with - fatigue, swollen eye, extreme joint pain and swelling - my mouth hurt and I had a horrible rash on my legs. It was a lot harder for me to function on it. We are hoping though, that after being on this med for 16 months, my body has gotten used to it and I will be able to handle the bigger dose better. I will be starting this within the week. Really all I can do is cross my fingers and pray that it won’t be so bad this time around. 

One side effect to this chemo is high blood pressure. So far I haven’t had an issue with that but lately I’ve noticed that it seems like my heart is beating harder at times. When I look down, my chest is moving a lot more then what I’m used to seeing. So Doc Robinson has me checking my blood pressure a couple times a day and record it.  If it is 160/90 or higher consistently for 3 days,  he wants me to reach out to him. So far it hasn’t been, but sometimes one of those two numbers will be higher then where he wants it to be. If needed, he will put me on a blood pressure med, but I’m hoping it doesn’t come down to that. I don’t like the idea of adding another med or side effects to my list!  When I go back in April for my scans, I will be getting an echocardiogram too. 

Over all, I’ve been doing okay. I did recently find a way to help control my sore joints. I take a pain med in the morning and then in the evening I take ibuprofen. I usually don’t like to take ibuprofen because it has blood thinners in it. They don’t want you to be on that if you are going to have a surgery. I don’t have any surgeries lined up, but you never know when I might need one. I bleed a lot after a surgery as it is, so I hate to take something that can make it even worse. But, it seems to be the key to controlling the swelling and joint pain, so for now, I’m going to take it! It makes a world of a difference for me because I honesty felt like I was 90yrs old. Every little move I made hurt.  

The worst thing I’ve been dealing with the past few months is a tooth that I need pulled. After the 7 week radiation I had done in 2017 to my jaw area, I have had to have a couple molars pulled. Radiation is basically ’killing’ them. In October I started getting this severe nerve pain. It runs through my teeth - top and bottom - and in my cheek going up into my nose, eye area and side of my head. This happens many, many times a day. At first I thought it was just a new nerve issue, but why all of a sudden did this come on? Then one day it hit me - maybe I have a cavity? I don’t feel normal pain on the right side of my mouth, so maybe this nerve pain is the result of that?  I went into my dentist and sure enough, I have another molar that needs to be pulled. Wonderful. He put me on a strong dose of antibiotics and referred me to the oral surgeon in Marquette that I have seen before. So I call to set up the appt - and keep in mind, this is the beginning of November - the receptionist says, “Sure, we can set up your consult for February 23.”  ARE YOU KIDDING ME?!? That’s almost 4 months away! I’m on chemo, I shouldn’t be walking around with an infection for that long. I told my dentist’s assistant, and bless her heart,  she called them back and explained my story. They said they will put me on their priority list and get me in as soon as possible. Well here I am, still waiting! It has been a nightmare. I’ve tried to get in to other oral surgeons, including mine at Mayo and have had zero luck. I feel my oral surgeon at Mayo would have got me in by now, but when I send a message in my portal, I’m in contact w his receptionists or nurse, and not him.  And they just say we are booking out into March/ April. My orthodontist here has also helped me out by sending referrals but no luck with that either. I understand that oral surgeons have been so busy since Covid, but you’d think some would have exceptions for people in my situation.. Next week I finally have the consult, but who knows when the actual appointment will be!  It’s just been very frustrating and another thing to add to my plate that is already full. 

My sleep has been horrible for a few months now, I’m up almost every hour. Usually I can fall back to sleep easily but by 6am, I am over it and just get up! Here I am at 4:30am, writing this blog! Idk if it’s a result from the nerve pain that I’m waking or what is causing it. Sometimes my face hurts or my joint pain is so bad that I can’t get comfy again so it’s easier to get up and take my pain med. And then hope that I can fall back to sleep for a while after getting the kids off to school, before I go into work. Some days I don’t know how I function and push through. I only work 5 hour shifts but I’m starting to worry that that might be getting to be too much for my body to handle. I’m exhausted at the end of it most days and feel like I just worked 12 hours.  

I’ve done a lot of complaining in this blog, but don’t get me wrong, things are also good! The kids are busy with their activities, it’s been fun watching Rease and his sports. Shay is looking like a teen more and more each day. It’s crazy how fast time flies. I feel lucky that I’ve been around this long to experience them growing up. Rease was 10 when I found out about my cancer and he will be 18 in October!  In August we added a puppy named Rosie to our clan and she is so great! Super sweet and chill, and Nala loves having a partner.  We have a few trips this Spring that we are looking forward to, and hoping it’ll help pass the rest of winter!  

I think that wraps everything up! In April I will go back to Mayo for both scans and the echocardiogram. At that point I will have been on the larger dose of chemo for about 2 months. We are hoping I handle the chemo well and see some improvement on the chest scan!