For those of you new here, I have an ongoing relationship with cancer. I was diagnosed with Follicular Thyroid Cancer in January of 2016. I had surgery and went through Radioactive Iodine Treatment at the time and for a year or so I was good. Then my thyroglobulin tumor markers started to increase so I was put on a watch list.
Being on a watchlist consists of appointments and tests every three months. Things continued to go bad with the numbers indicating that my cancer was back, but try as they might, the cancer has never been able to be found.
So they have drug me back in every three months to tell me that they can’t find it…they are sure it’s going to pop up…but they can’t find it now.
The numbers got higher in 2016 and my doctor sent me on to Mayo Clinic. Still, nothing was found. My numbers have continued to go up. Still, nothing has been found.
In June, I went to the doctor and my tumor marker went up a lot higher than anticipated. She wanted me back in three months for a PET scan. My insurance wouldn’t cover one…we did CT scans instead. Nothing much different was found on the CT scans but again, my tumor marker jumped much higher than expected. After a huge runaround, my doctor requested a PET scan, and this time my insurance approved it.
My doctor told me she is pretty confident that something is going to show up this time. Typically in cases like mine, once the number gets over 1000, mine is 1250 or so, she said something should show up in the scan. Sadly, thyroid cancer typically spreads to the bone or lungs.
For a long time, they have focused on my lungs but there is little to no change there…some nodes shrink, some grow. When I say grow that means they go from 5mm to 7mm.
This time, she’s suspicious that we might find something in my bones. I’ve been having some hip pain on my right side so I wouldn’t be surprised it that is where the cancer moved to.
Thursday was PET scan day. Friday was the day for me to meet with my doctor.
Here is what I learned…First off…I’m going to warn you, this is a LONG story. Grab some coffee or come back later when you have time to read it all. I’m telling you all exactly what I told my kids as I’m upfront about it all. One of my biggest pet peeves when dealing with my cancer is when people think they know what’s happening because they heard something from someone else. I promise, if there is something to know, I will be the one to tell it…and you’ll find that info here.
Our youngest daughter, Kalissa, went with me to the appointment.
Kalissa has a way of making even miserable days fun!!
Our appointment was at 7:45 am. To get there, we left my house at 5:45 pm. By 8:30 am the doctor still hadn’t been in to see us. My doctor is notorious for having me sit in the waiting room a long time but this was about the longest. She finally came at about 8:40 am. She brought a pharmacist with her. Hmm. I took that to be bad news.
We sat down, she pulled up the scan and told us no cancer was found in my bones. That was good. I had looked up the prognosis for that and only about 60% of people in that situation live past 4 years.
Kalissa and I were happy we dodged that…but cancer did show up in my lungs. Many of you are then going to think, oh, she has lung cancer now. That IS NOT TRUE. I have THYROID CANCER IN MY LUNGS. The same cells that made up my thyroid cancer jumped residence and set up shop in my lungs. It is very important in my case to remember this.
This is important to note because this will be treated with the same protocol as THYROID cancer NOT lung cancer. I will not get chemo. I will not get radiation. They do not help what I have.
Back when we knew this all was a possibility my doctor did genetic testing on me to learn what is the best way to treat this should it come to the point that I need treatment. Well, we’re here now.
The way thyroid cancer is treated is through radioactive iodine. It’s a pill I ingest. But…we have a problem. My cancer cells are no longer interested in taking up radioactive iodine leaving it pointless to treat me. BUT, they have a new drug that they are willing to try with me. There are four points of criteria to make patients eligible for this drug. I have three points and she’s willing to try it with me. The hard news is that it is about 50% effective in people in my situation…so if you want to shoot up some prayers that I’m one in the 50%, that would be great.
The treatment is fairly new. The team at Mayo has given it out about 30 times before…yes, I’m feeling a little like a guinea pig, but it’s okay. I’m willing.
My cancer is still slow growing so I was given the option to not treat at all and watch…but I opted to give it a try.
Here is how it all goes…
Being the drug is so new, it’s sometimes a fight with insurance companies. My doctor assured me that if my insurance won’t cover it, Mayo has a financial assistance fund. I was thankful for that as it sounds super expensive. With the work back and forth between getting it paid for, and it being a rare drug, it might take up to a month before I even get the meds. This is not a medicine that comes from any regular pharmacy. Mayo has a special pharmacy for this.
Once I have the meds, I have to contact Mayo Clinic and tell them I have them. Then scheduling needs to happen and they will tell me when I can start taking the meds.
I take the medicine for 30 days. I was told to expect nausea, diarrhea, and a rash. There are other side effects but these are standard. Most everyone gets them. They said to expect the rash on my chest, face, and in my hairline. I am to expect to need steroids and antibiotics for the rash. It may take five weeks for it to heal after I’m done taking the 30-day dose.
About halfway through taking that med, I am put on a low iodine diet. I have done this before. It’s a very miserable diet. I complain about it every time I have to do it and I’m warning you…I’ll likely complain about this next time too. But, what’s a little complaining between friends, right??
I’m on the diet for two weeks and then the treatment week starts:
Sunday I drive to Rochester for a shot and back home.
Monday I drive to Rochester for a shot and back home.
Tuesday I drive to Rochester for a shot and back home.
Wednesday I drive to Rochester and get the full-body scan. This is the critical test that will determine what happens as here is where the fork in the road is.
IF THE TUMOR SHOWS UP on the scan, the drug that I suffered through for the 30 days worked. I will:
get a shot and be allowed to go home.
Thursday I drive to Rochester for a shot and back home.
Friday one of the kids, Buck already volunteered, will drive me to Rochester and drop me off at the hospital. I will be given a large dose of radioactive iodine. This dose will likely be about double what I received previously. This dose is large enough that I can’t be in the public. I will have to be in the hospital for a day or two. Do you remember learning about half-life in Chemistry in high school? Do you remember not knowing when you’d ever use that info again? Today is the day!!
The radioactive iodine breaks down as time passes. I will be periodically tested and once I am within the levels, I will be able to go home. I will not be able to be around children for 21 days. I need to keep to myself a few more days, then I can be around adults but I should maintain a distance-no touching. There are lots of other regulations but I won’t bother getting into them at this point…because, I might not even get there.
They did tell me that in the hospital I am not allowed to take a phone, tablet, or laptop. OH MY. I am not allowed to take cross-stitching. Anything that I touch or is in the room with me will have to be left there and destroyed. will They suggested a paperback book or a word find book. Thank goodness it usually isn’t more than 48 hours.
Remember I said that there is a fork in the road? I told you about one of the forks but I didn’t tell you about the other yet. There is a 50% chance that nothing will show up on this full-body scan. IF NOTHING SHOWS UP ON THE FULL-BODY SCAN, I will get the consolation prize and be sent home. I will not be able to get treated. The cancer will be allowed to grow. We’ll watch it with continued testing. At some point, I will have enough cancer in my lungs that breathing will become an issue. That might be in two years… it might be in 10 years. At that point, I will have the option to go on some meds with some pretty crappy side effects.
I’ve already told my kids, and I’ll tell you too. If the side effects are terrible, I might opt not to take it. It prolongs life but doesn’t cure anything. It matters where I’d be at this point and if I get the side effects as much as suggested on whether I decide to take it. I don’t want to live miserably. I am totally willing to extend my life…but I have no interest in prolonging my life in a miserable fashion.
So…when does this all start?? Who knows. The plan is for:
-my doctor has put in the request for the 30-day meds that will give me the rash.
-Once I get them I call my doctor and tell her I have them.
-They set up the appointments for all of the shots
-They make sure the radioactive iodine does is available
-They reserve a bed at the hospital.
-They let me know the plan and when I can start taking the 30-day meds.
Here is a glitch. Hospitals are still FULL in our area. There aren’t many beds available due to Covid. I can’t do this unless they can guarantee a bed and nurses to take care of me.
My doctor said that all of this planning, organizing, getting the meds, and reserving the hospital bed might take a couple of months. My doctor flipped the calendar and said, “Oh you might want to wait until after the holidays.” I caboshed that immediately. I can be on a diet over Thanksgiving. I can miss Christmas. I’m totally okay with that. I am just ready to take a step forward in treating this.
I do want to tell you…I am only considered treatable. I will live the rest of my life with thyroid cancer in some capacity. Even if everything goes as I hope and the 30-day drug helps my body be open to receiving radioactive iodine and I go through the treatment, this will buy me a big chunk of time, but it will not cure my cancer. My last treatment bought me almost six years of good living. I’m hopeful that we’ll be able to treat and I’ll get six or more years more.
Kalissa and I both left the hospital very hopeful and excited for the next chapter in dealing with my cancer. It was a long day on Thursday talking to our other kids, family, and friends…and now, it’s evening Thursday night as I write this and tell all of you.
This is not bad news…
I was getting tired of all of this hanging over my head. At least now we are doing something. I’m a gal who loves a plan and I always feel better with one, so this is good.
This does put a lot of stress on my childcare families. Finding childcare is always hard…plus I don’t know what days I’m going to need off making it doubly hard…and the tumor might not show up in the full-body scan and I won’t need the 21 days off. They have assured me that they will do whatever is needed. They are really a wonderful group.
My kids are all hopeful and already super supportive…I love them like crazy.
If you’re a prayer or a “good vibes” person, feel free to send some on my behalf. It would be so good if the 30-day meds would do their trick and we could treat this again.
I promise to keep you up to date. I know many of you worry and wonder about me. Please know, right now, I am good.