Doctor

I had a doctor’s appointment today with my oncologist. It wasn’t great. I’ll post more about it later because I guess I’m really not exactly in the mood to talk about it right now.

Clinical Trial

I talked to my onc today. Good news, I’ve been discharged! I’m also getting a home health aid through Hospice. My onc is working on a clinical trial that applies to me and that I qualify for…and it’s enrolling now, and I decided to go ahead and let him enroll me in it. My mom would really appreciate it. It’s in phase II. They’re trying Sunitinib in combination with Gemcitabine, which means I’ll be back to getting chemo through an IV and not just oral chemo, though Sunitinib is an oral one. I’m not quite sure how I feel about this, but I figure I have nothing to lose, right? Well, nothing but potentially quality of life. But quality schmality (sarcasm). It’s good, because there’s usually something that excludes me from clinical trials, but this one seems to be a little broader, so I qualify for this one. The trial is at the hospital that’s a little further, but it’s only a 10 to 15 minute drive away as opposed to the one I usually go to, which is 4 blocks away. It’ll be worth it, though. At least there’s something new to be hopeful about.

Hospice?

I have some good news. Once I talk with the nutritionist, I’m getting discharged! My heart is looking good, and since I went yesterday, and my O2 sats are up, and I took a couple of laps around the unit, they’re gonna let me go! That’s really good, that’s great, but before that, I have a meeting with my social worker, Mags, and my patient navigator to talk about the benefits of Hospice. I talked with my onc already about the possibility of stopping treatment, but it’s something I’m going to have to think about for a while. I feel like Hospice would be super beneficial, but I can also think of some people who may be kind of upset if I choose to do that. Luckily, it’s not like I’m being pressured into making any kind of decision. I can think about it for as long as I want. It’s gonna take a lot of thinking and serious conversations, so I’m gonna talk to my parents about it in person when I go home. Also, Hospice has more than just a facility that you can go to, they have home health nurses and lots of other things that I’m gonna learn about today, so there’s that.

Catch Up

I’ve been hanging out with my parents for the last few days, because they’re visiting me. We went to the art museum, took a nap, I went to the lab…but at the lab I passed out and hit my head. Nothing major, just bruised. I finished my 24 hr MTT, though, and I’m doing my 48 hr today and my 72 hr tomorrow. So today my parents and I went to the mall and I got 2 shirts which are really cute. That’s where I’ve been and what I’ve been doing. My stomach, chest, and back been hurting quite a bit, but since my parents are here it’s ok. I have an appointment tomorrow morning with the oncologist and one Saturday morning with the psychiatrist. Hopefully, I’ll get taken off one of the medications. We’ll see.

Making Progress

Hello! I went to my research orientation part II today and learned about bioinformatics, research papers, research grants, and poster presentations. It was kind of long and boring, but tomorrow I start the good stuff!

So the counselor called me today asking why I didn’t want to continue with her. It was awkward. Then I went to the psychiatrist and she basically asked me the same thing. They both were trying to convince me to still see her, but I definitely don’t want to. I don’t know what to say to them to convince them that I don’t want to see a counselor. I got my meds refilled, too, so that’s good. I also talked to my oncologist and got another anti-nausea med added to what I’m already taking. I’ll have to take meds more often than I already do, but I guess it’ll be worth it.

Headed in the Right Direction

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.

Update

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

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.