Tag Archives: radiation

SRS

15 Jun

I start SRS for my lungs on Monday. I had my markers placed, my pre-treatment consultation, I’m going in 3 times, and I’m a little nervous. I know it’s not going to be a huge deal…I don’t think it’s going to be a huge deal, but I’m a little nervous about the fatigue that follows. I have research to do, places to go, people to see…well not really people to see, but I don’t want to be insanely fatigued. You catch my drift. I just want this to be over with as quickly as possible, and most importantly, I want it to work! A month from now I’ll get a CT to see if there’s any progress, and that’s the day after my birthday, so there better be some progress! The pain has been more under control recently, and so has the nausea, so that’s good. My parents are gone now, and hopefully we’ll get good news from my dad’s PET scan results ASAP. I didn’t get taken off of any meds, but I got the dosage lowered on one, so that’s good. I think that’s all for now.

A Little Bit Random

18 Mar

I’ve been feeling really depressed and anxious today, but luckily, my counselor took it upon herself to email me constantly today. I think I needed that.

My dad is currently away at a funeral right now. My cousin died from colon cancer. I kind of had a feeling this was coming, I guess, but you never expect it to be so soon, I guess. And then on top of that, things like this just kind of tend to remind you of your own mortality. Like…we’re not going to live forever, but I don’t know how “done” we’re supposed to feel when we’re actually finished here.

There was a guy who shot and killed himself back at my college last night. I was just there! He was planning a school shooting, but decided against it and shot only himself. I have friends that live in that building! They think he changed his mind because his roommate ran in the bathroom and called the cops after he aimed at them. What is happening in this world?!?!

Also, I don’t remember if I mentioned this or not, but my dad is done with treatment now. He’s done with radiation, and he’s not doing his last round of chemotherapy. He didn’t want it, so…yeah. He’s done.

Close, but no Banana!

28 Feb

Found out that my dad won’t be done with treatment this weekend. Bummer 😦

His WBC counts were too low for chemo on Monday (welcome to the club), so he got 2 Neupogen injections this week, and the chemo was pushed back to March 11th – 12th. He had a lot of skin irritation from radiation, so the 4 more days of radiation that he has were also pushed back. He’ll be getting them next week, Mon – Thurs. Since I have a lot of make up work and exams to keep up with and study for, my parents have been keeping me a little out of the loop with him, so that’s all I know for now. They’ll fill me in with more details later…once these exams are out of the way. That’s fine, I guess. I just like to know exactly how he’s doing. Makes me feel less anxious.

Updates on Daddy

23 Feb

My feet are on fire, omg! In other news…my daddy only has 1 week left of chemo and radiation, woot! He’s been doing surprisingly well with all of it. I mean he can’t taste and he has mucositis in the back of his throat, so he’s lost a lot of weight…but the radiation has given him a stunning tan ^_^ and he’s been trying to do some work here and there around the house since he hates being bored or just chilling…probs where I get that from. He’s also been trying to do some stuff in the yard, and wears this big floppy hat and lathers up in sunscreen to protect himself from the sun. It’s pretty funny.

He’s mostly just been desperately searching for something to eat that he can actually taste or that doesn’t taste awful…AND that doesn’t hurt as it goes down. He also said the anti-nausea meds they gave him makes him nauseous. Ugh. Otherwise he’s doing pretty well. 🙂

How Daddy’s Doing

15 Jan

So my dad had his first radiation yesterday and his first chemo today. He also had radiation today, as he does every M-F for 7 weeks. He has another chemo session tomorrow, as he’s getting the cisplatin in half doses 2 days in a row each time instead of the full dose for just 1 day each time. It takes about 5 hours, because he gets hydration before and after. He’ll have a total of 3 of those chemo cycles during the course of his treatment, and hopefully that combined with the radiation will do the trick. He’s doing ok, you know, not feeling it yet. Hope it stays that way as long as possible, but we know how these things go. His PET scan came back pretty much like we expected it. They missed a bunch of stuff behind the tonsillar fossa during his original surgery…cuz he was never scoped properly, and really should have had a plain old biopsy instead of a tonsillectomy at that point, but what’s done is done. He had a teeny tiny bit of microscopic lymph node activity. not enough to call them positive, but enough to use chemo and radiation, not just radiation. You know, just in case. Make sure we kill it dead! So…he went in and they asked if he was wearing this patch he was supposed to get in the mail to prevent nausea. He hadn’t gotten it. He was supposed to start wearing it yesterday, because prevention means start before the nausea hits, duh! WELL…they never ordered it for him! -__- So, they gave him something else, charged him for it, ordered the patch, charged him for that ($75), and then charged him up front for the chemo infusion a good $313! It’s gonna be $313 every time he goes in. They’re not gonna bill him like they bill me. Now THAT can cause nausea, I’m sure. Like what if he didn’t have $313? Would he not get treatment? “Sorry, sir, no cancer treatment for you!” Or would they just bill him then? Just seems like a stress he doesn’t need.

Anyways…I had a dream about him last night. He was at this theme park, because he wanted to do something fun before he started chemo. There was a race car driving ride, but you really had to drive it. The track was on an elevated platform. He got so good at it that he became a tiny bit of a celebrity within the theme park, and people came to watch him drive. When I came to watch, he drove around the track a few times, and it was really awesome, but when he finished, the people operating the ride couldn’t get the car to turn off, so sparks started flying, and his car flew off of the platform and landed upside down. That’s when I woke up…freaked me out!

But yeah, that’s how he’s doing. He’s alright. Just concerned because they said some medicine of his might make it hard for him to sleep, and then they were like, but get lots of rest! Hopefully that nausea medicine that may make him sleepy will cancel out the medicine that keeps him up, and he’ll go to bed at his usual time haha…wishful thinking.

Headed in the Right Direction

27 Dec

Since we couldn’t get the answers we wanted from the doctors we visited, my mom called a doctor up at Memorial Sloan-Kettering in NYC. This guy basically wrote the book on head and neck cancers. He said that they have divided up his department, and he now only does thyroid cancers, but he advised us to take my dad to Moffitt. She decided it’d be convenient to take us both there. Since Moffitt is an NCI, I think they had an easier time communicating with my doctors back in Georgia, who also are part of an NCI. They had all of our scans pulled up on the computer already when we came in and everything.

So, yesterday we went to Moffitt, and my dad saw the head and neck surgeon who does these specific types of surgeries in his sleep. He only does this, and that’s it. From the MRI that my dad had, we know that the tumor left behind is actually 2.8 cm, not 1.5. This adds up to about 4.3 cm. This technically puts him at a stage T3. The surgeon scoped him and confirmed this. He also said that it invades the base of his tongue, and it’s right in front of his epiglottis. It’s not another tumor, it’s an extension of the original tumor. They think he has some microscopic disease going on in the lymph nodes, as the ones on the left side are slightly enlarged. He said he definitely would not suggest further re-excision or any more surgery, as this would cause permanent dysfunction to his speech and/or swallowing, and he would still have to get chemotherapy and radiation. Why do it if chemo and radiation could achieve the same results without the surgery? So, what he said was the protocol that they use is 7 weeks of radiation, with 5-FU and cisplatin on days 1, 22, and 43 of radiation simultaneously. They also do the PET scan while doing the radiation simulation to get better targeting. There was also a study being conducted by a radiation oncologist there comparing 2 cycles of this chemo to weekly chemo treatment with Erbitux all while doing the radiation. This trial is being done in HPV positive patients, and my dad is one of them, so it’s possible that he could qualify.

After meeting with him, the radiation oncologist was there, and said that he could meet with my dad. He wasn’t even supposed to be in that day, and they had no appointment with him, so this was very convenient. Now this guy has about 25 years of experience with specifically head and neck cancers, and a lot of experience with HPV positive tonsillar cancers, as he is conducting research on it. He said almost the same thing, but his treatment plan was a bit different. He suggested 6 weeks of radiation, with one day a week being doubled-up, as in radiation in the morning and the afternoon. He’s going to bring my dad’s case before the tumor board on Tuesday to see if he qualifies for the trial, as the tumor may be too large, there may be too much lymph node activity, and he also wants to see if he even needs chemotherapy. If he does, it would be cisplatin alone 3 times throughout the radiation. He’s going to have radiation simulation with the CT scan today and with the PET scan next week. He’ll have to have a dental appointment to make sure his teeth are ready to handle this radiation nonsense, and then he should be able to start about 2 to 3 weeks after that.

I met with a medical oncologist who does a few different kinds of metastatic cancers. He said that he would have done 2 more days of radiation for the bone mets. He thinks that would have been more effective in managing my pain. He also said that he would have chosen a different order, basically, for the medicines that I have been put on for the control of the tumor growth. He’s pleased that I’m on the Axitinib (Inlyta) now. He said that he would have taken out the whole right kidney, but it’s too late for that now. He does, however, want to consider trying Zanosar, but he’ll have to take this to his tumor board, which meets next Thursday (not the one today). It was a little discouraging listening to all the things he would have done differently, but that it’s too late to change. It makes me think that things could be a whole lot different right now had I gone to them in the first place or had I started out at an NCI at the very beginning of my treatment. It just seemed like a lot of coulda, woulda, shoulda during my appointment, but he said that he’s hopeful that the treatment I’m on now should give me the best chance for basically living as long as possible. He also gave me some tips for gaining back some of the weight I’ve lost, so I’m going to try those. He confirmed that what we’re doing now isn’t exactly standard, but it’s what he would try at this point. But he doesn’t like that my symptoms aren’t well controlled, so he’ll work with me to adjust the dosages in order to get them under control. Especially with the breakthrough pain and the nausea.

We Just Want Answers!

19 Dec

So, here’s the situation. My dad’s pathology report showed a 1.5 cm tumor on the left tonsil. That was removed. Great. Then, he saw an ENT that scoped him through the nose, and did an MRI with and without contrast last Sunday, and said that there’s another tumor (or piece of tumor) still in there that’s about 2.8 cm. The cancer that is still in there is also invading the base of his tongue. This all adds up to 4.3 cm. That being said, that means that he’s probably a stage III, not the stage I or II we originally thought.

Not the news we wanted, however, this is a treatable cancer, and there’s still hope. There’s always hope. Sometimes hope is all there is..

SOOO, this same ENT wanted to do a radical neck dissection surgery to remove lymph nodes from the left side, along with the remaining tumor, and she wanted to get “clear margins of about 5-6 mm.” If she couldn’t do that, she would still remove the tumor, but the surgery would be less extensive. If she got the margins she wanted, she said she wouldn’t see the need for him to have chemotherapy or radiation. This sounds good, because chemotherapy and radiation suck, but we would probably want him to at least do radiation anyways. However, if she couldn’t get the margins she wanted, he would definitely need radiation, and possibly need chemotherapy (They usually use carboplatin, cisplatin, 5-FU, paclitaxel, docetaxel, cetuximab, and/or something of the like for this type). They put in a PEG tube early, as the treatment can cause mucositis, which would render him unable to eat.

My mom called some radiation specialists at UF’s Shand’s Hospital, and they said that the protocol for this type of cancer is not the neck dissection surgery, it is radiation alone. Radiation alone has the same cure rate as the neck dissection surgery, and is less invasive. The type of radiation used here is the usual external beam IMRT type of radiation, and not proton therapy. He would probably get somewhere between 50 and 70 Gys, 1.8-2 Gys a day, 5 days a week, for about 7 weeks. My mom was hoping for the possibility of proton therapy (they currently tend to use electrons) because there’s a reduced risk for secondary malignancies as a long-term side effect from the treatment.

This being said, we’re all a little confused as to what to do next, and we just want some answers. Three different doctors have said 3 different things, and it’s a bit overwhelming. Right now, my dad is doing okay. He just tires very easily and is sleeping a lot. His MRIs so far haven’t shown nodes, but they have shown a tumor in his brain. It’s unknown whether it’s an incidental finding or whether it’s related to the tonsillar squamous cell carcinoma. It appears to be benign, as it hasn’t grown between the 2 times they did MRIs with and without contrast on his brain. He still hasn’t gotten his PET scan, because the inflammation from his surgery could show a false positive, so he’ll be getting that in a few weeks.

Once we figure out all of this madness, he should be starting a treatment plan in earnest…obviously. I just hope that happens soon!

My surgery was yesterday morning, so my mom has been here with me. It ran longer than expected due to some complications, and I’m in a surprising amount of pain. I didn’t expect to be in this much pain, honestly. My vitals, liver enzymes, blood calcium, kidney function tests, and CBC results are ALL really crappy, too.

My mom hasn’t been sleeping recently, so I asked if she was okay, and to really be honest with me. She, understandably, feels the need to hold it together for all of us, but that leaves her holding everything inside. So, I told her to just be honest and let it all out. She started to cry and told me she was distressed, so we just held each other for a while and had a crying session. She wants me and my dad to be with her forever. She’s also scared because my brother wants to go into the Marines and then become a police officer. She’s legitimately afraid that she will outlive all of us. This thought has occurred to me before, but I’ve tried not to let it linger. It just shook me when she actually expressed it. I asked if she had anyone to talk to that she could just be honest with, someone that could listen to her and she didn’t have to pretend that she was always okay, and she said that she did. I know she wouldn’t be this open with me on a regular basis, so I had to make sure she had someone to cry with if she needed to. I’m getting her a gift certificate for a massage for Christmas, don’t tell! We’re a mess.

12-12-12!

12 Dec

Apparently my dad didn’t have the PET scan yesterday. He’ll have it Thursday instead. Why? I don’t completely understand. Some kind of paperwork issue. Whatever. They apparently didn’t get all of the cancer cells during the surgery either, so he’ll have to have a radical neck dissection and/or radiation…some combo of the two, and he may not actually need chemo, but they said it’s not completely off the table yet. My parents are getting different opinions from different doctors right now to figure out the best option from him before they move forward. It’s the best thing to do. I just want to know what we’re dealing with, what we’re gonna do, and do it! It’ll make me feel more at ease once we start attacking those cancerous little buggers! Death to the big C! (This is where you imagine some kind of Spartans “The 300” sort of imagery).

 

Update

11 Dec

My dad had a PET scan this morning, and he has an appointment with a hem/onc and a rad onc this afternoon. We’ll finally know more…stuff about…things, as in what his treatment situation will be like, and whether or not they got everything out during the surgery. I hope so! My mom will fill me in later today.

I have been so nauseous all week. I’m actually having trouble swallowing food, and then once I swallow it, it seems like it just sits in my chest. Not cool! I don’t want to have the NG tube anymore, but that means I’ll probably have to get the PEG tube again, which I don’t want either. I guess it’s one or the other, though. At least I can stop worrying about weight gain that’s usually associated with school…that’s one way to look at it, I suppose. And…if I get a PEG tube, I can get healthy gross things and not taste it! Ok, I guess it doesn’t have to be so bad…I think…or something. Whatever. I’ve also been having a harder time keeping my pain under control…the past couple days have been pretty intense, but we’ve decided that I’m going to get radiation for the bone mets, and that should help a lot. I hope it does!

In other news, I get to see my family in a few days, yay! I also get to see some of my college friends starting Thursday, woo hoo! 🙂

Dum Spiro, Spero: While I Breathe, I Hope

30 Nov

Here’s hoping…

My mom texted me and said that my dad is out of surgery. The pathology report is back, and she wants to call me later and discuss it with me. I just want to know what it said. The fact that there’s anything to discuss, and that she won’t just tell me right now is making me a nervous wreck over here! Since I still don’t know anything, I’m still praying it’s nothing new or that it’s some kind of “Oh, that just happens when you get older” kind of thing.

So much for hoping

So about 30 minutes after I typed out the above paragraph,  my mom called. My dad has squamous cell carcinoma in his throat. They think it’s stage 2…but more information to come when he visits the oncologist and has his follow-up with the surgeon. REALLY not the news I wanted (obviously), but with a combination of chemotherapy and radiation (total suck), he should be okay. That’s what I was told. If you pray, please keep him in your prayers.