#folfox

[sumayarahman]

Chemo o’clock

Cycle 3

[belghast]

State of the Bel: Round Three - Not a gaming post, but instead a post talking about how things are going after my third round of eight rounds of chemo.

State of the Bel: Round Three

[kcfights]

Chemo 101

We came, we learned, we went home with a 3-ring binder.

I'll be the first to admit that I love all things organizational, but it is intimidating to have a 3-ring binder just waiting for you when you walk in the room.

Fortunately, our NP Ashley knew exactly how to break the information down into digestible chunks.

First:

My chemo regimen has the secret-mission worthy nickname of FOLFOX.

FOL = Leucovorin; Folinic Acid

F = 5-FU or fluorouracil

OX = Oxaliplatin

The folinic acid is to help with the absorption of the chemotherapy drugs, 5-FU (you know you laughed) and Oxaliplatin.

Second:

Each FOLFOX treatment is repeated every 14 days, making one cycle.

My cycle will look like this:

Day 1: Wednesday

Report to Dublin Cancer Center for check in, blood work, chemotherapy via infusion.

Go home with a pump containing 5-FU attached to my port, to be returned on Day 3/Friday

Day 2: Thursday

Pump continues to administer 5-FU

Fun fact: the body metabolizes 5-FU almost as soon as it is introduced. During the infusion, folinic acid is given to help slow the body's metabolism of 5-FU to help it be more effective.

At least I think that is what Ashley told us; I will edit if I have that wrong. There was a lot in that binder!

Day 3: Friday

Go to Dublin Cancer Center to have pump removed.

Day 4 - 14

No treatment

Days 3-6 tend to have the most severe side effects

There is a whole list of those, and we will discuss them later.

Third:

We toured the treatment area. Considering how much time I am slated to be in my assigned bay, it was uplifting to see how pleasant the space is. We were advised to expect visits to last 4-4.5 hours, which seems like a long time, until you see how it gets broken down.

Having the port means I don't have to do IV's, so that is a huge bonus in my book. The area is kept cool, but there is an unlimited supply of warmed blankets, which might be the best selling point I've heard of anything ever.

JR is welcome to be with me, but even if he can't stay the whole time, (or if I kick him out to catch up on my shows) his office isn't very far away. I was encouraged to bring any kind of electronic I liked, as well as books/etc.

Do you think I can sneak my cricut in?

Maybe I'll save that for the second or third round.....

Fourth:

We walked out of our orientation on Friday feeling so much better about everything. There is no doubt that this is overwhelming, but we have such wonderful people guiding and helping us through, that it makes it less scary than it was.

Also, a consistent schedule means I can make a spreadsheet, and anyone who has ever met me knows that is a good thing. (Mom, expect your copy soon!)

Fifth:

For the current list of dates/chemo cycles, you can check here.

Thanks for checking in!

[katiescancerjourney]

Anaphylactic Shock, 6/15/22

When I started back on FOLFOX, they said that you can develop an allergy to the main chemo in the cocktail, oxaliplatin - the one that gives you the shitty side effects like cold sensitivity, etc. So as a part of your pre-med drips, they add a healthy dose of Benadryl. It’s pretty awful as you get a drip of steroids right before and the combo is like being on drugs with none of the good parts. I always try to be one with the Benadryl and sleep through the rest of the drips.

I had noticed that whenever the nurses would start the oxaliplatin I would get an itch in my throat but it always went away and I figured that the Benadryl was doing it’s job and went back to sleep. For some reason, this round, my 6th round, I decided to let the nurses know that I always feel that little itch. They definitely seemed annoyed that I hadn’t mentioned this before, totally fair, and I promised to share if it happened again. 

I don’t know why, but I just knew in my gut that this time was going to be the time it didn’t go away.

Sure enough, a few minutes into the oxali drip, I sat up in my chair with shooting pain up and down my back. I probably looked like I was having a seizure as my body convulsed every second to the pain and I couldn’t keep my head up. The nurses ran in, took out my oxali line, pushed anti-nausea meds and more Benadryl and called for an NP. I started dry heaving and went into rigors. I was shaking and dripping sweat and my throat felt fuzzy and foreign, like it wasn’t a part of my body. However, I could breath in and out of my nose and I knew that if I remained calm and focused on my breathing, the meds would kick in in a few minutes and things would be fine. They had an epipen and push of pain meds ready to rock but I asked them to wait because I felt so fucked up from the Benadryl, I couldn’t imagine putting more medicine in me. Sure enough, a few minutes later, sweet relief. I couldn’t really talk and had no motor functions at that point so the nurses let me sleep if off. They woke me up an hour later and I said I was ready to get the fuck home. They were so freaking sweet, even offered to run across the street to Starbucks so I didn’t fall asleep in the Uber home but I felt confident I could get home fine. I did, and spent the rest of the day in bed, loopy as all get out, trying to take in everything that had just happened to me.

As FOLFOX is still such a good chemo, they want to try again, but this time, give me the drip over 8+ hours so see if only little bits at a time will prevent another allergic reaction. 

It’s funny, at first I was so bummed, like damn, I have to be at the treatment center for over 10 hours to get all my drips now? That sucks! I called my friend Sarah who had also had the same reaction to commiserate and whatnot and started to complain about the longer drip and she said “oh wow, you’re so lucky! I wanted to try the longer drip but my side effects were too bad at that point and they wouldn’t allow it” and then I realized, I’m lucky I get to try this bad ass chemo again. Sarah never fails to show me the bright side, like ever. 

[katiescancerjourney]

FOLFOX Round 2 + Scans, 5/19/22

My second go with FOLFOX has been surprisingly different to the first. Last year, I would be super sick on Wednesday and slowly get better. By Saturday I could hang out with friends (albeit not rage till dawn) but go out and have fun for a good chunk of the day. This time, I’m don’t feel great but not too terrible on Wednesday and then it get’s worst each day. I need to sleep non stop, the fatigue is outrageous. On Saturday and Sunday I miiiiiiight be able to see a friend but I need to be driven there and home to conserve all energy and I give up pretty quickly after arriving. It may not sound worth it but I believe getting out of my apt is always good for me. 

My last round was exponentially worse due to my hemoglobin levels being so low. I had to add an iron drip to my treatment. If you’ve never seen an iron drip, it’s blood red and looks pretty creepy. Apparently it can really magnify your side effects, as it makes you nauseous, fatigued, etc. I really struggled this round physically and mentally and spent a couple days in deep pity party mode, sobbing off and on, and in general feeling so sad about my life. As hard as these days are on me, and they are, I sincerely hate them, they’re very necessary and help me shed a lot of emotional weight. By day 5 I was feeling much lighter and although I didn’t have the energy for much, my neighbor and I went out for coffee on our block. He’s been the best, helping me with groceries, deliveries, etc. he’s become one of my favorite people.

I had scans on May 19th and like we thought, FOLFOX worked its magic again. Nothing huge, but some shrinkage here and there, no growth or spreading. Unfortunately my liver is still showing some suspicious activity, it has ever since my surgery, so I’ve basically told myself it’s already back in my liver. Any time I’ve had suspicious activity, it’s become cancer so I’m setting my expectations low, and hey, if that’s not what it turns out to be, fucking awesome.

[katiescancerjourney]

Scan Results, 3/24/22

I got scans after 4 rounds (2 months) of the new chemo Erbitux, also known as Cetuximab, and unfortunately things grew and spread. That fancy, expensive yacht chemo as I called it and I did not decide to be friends. It made me miserable and didn’t even help me out, what a dick.

Scans showed my lung tumors grew a little bit and the sacrum tumor grew a lot a bit. There were also new cancerous lymph nodes in my abdomen, esophagus and clavicle. 

I normally prefer to grieve on my own but something about this scan pushed me to reach out to Anna who lives nearby. We both had to run a few errands so we decided to meet by the City Point mall. As I was waiting in line to return, I saw her walk into the store and promptly walk out. My confusion only lasted a second as my phone started vibrating. She had just received a text from a friend she spent the weekend with saying she was directly exposed to COVID. Obviously no ones fault at all, but it was a punch to the gut. The one time I reach out because I really needed some in person support and this shit happens. When I left the store 5 minutes later, Anna was standing there. I started crying and she started crying and I put my hand over my face and we stayed like that for a minute. Then I felt a tap against my sneaker and I looked down to see Anna’s shoe on mine. What a pathetic scene, 2 girls leaning against the store window, standing 6 feet apart, crying, with legs stretched out so our shoes could touch. At least this got us laughing.

I got in an Uber home and Melanie called saying Anna had just explained to her what happened and she was coming from Philly. I said “don’t be silly, you don’t need to drive up here, I’m ok” but Mel basically told me to fuck off.

Friends are the best.

Next appointment I asked if I could go back on FOLFOX, the first chemo I was on a year ago. We know it works for me and I had had enough time off of it that maybe my body could handle it again. The answer was yes and the next plan was in place.

[theproverbialtreadmill-blog]

So, what is it like?

This is perhaps what many would like to ask me, but only the bravest of the brave would be able to. And so most of the news is shared to the grapevine. But here it is, straight from the source.

When people see me for the first time after hearing about my diagnosis, many are pleasantly surprised that I look relatively ‘normal’. Make up has done a fantastic job at hiding any other visible skin imperfections. I dress normally and do not exhibit signs of cachexia (weight loss). I am able to function within reasonable limits. Perhaps the only exception would be my hair (or lack of it) at some given point in time. But to the untrained eye, I look well and good, and will probably even be mistaken as ‘healed from cancer’.

But beneath the surface, what you don’t know is that it has been a long and arduous journey. One with many ups and downs, but with an abundance of love, faith, hope, laughter and positivity. 

To date, these are the main procedures and treatments that I have soldiered through:

Colonoscopy (the procedure which is what led to my diagnosis)

CT, PET scans and blood tests

Proctoscopy (another procedure in preparation for surgery)

Low Anterior Resection (surgery to remove the portion of my bowel where the cancer was located)

First-line chemotherapy - 12 rounds of FOLFOX

More CT, PET scans and blood tests

Percutaneous lung biopsy (a procedure where a needle is inserted into my lung to obtain tissue sample for a genetic test of the KRAS gene)

Port-a-cath implantation (minor surgery to implant a subclavian port-a-cath)

Second-line chemotherapy & targeted therapy - 12 rounds of FOLFIRI & Avastin

Third-line chemotherapy - Xeloda

Phase 3 Clinical Trial - Lonsurf (a relatively new oral chemotherapy drug)

Stereotactic Radiosurgery for brain lesions in my cerebellum and right temporal lobe

Whole brain radiation for 4 other sub-centimeter brain lesions

Radiation to the sacrum, sternum and lung.

I consider myself incredibly blessed to have been able to withstand such long treatment history, and still be in a position to further withstand more. It is incredibly rare for someone to be part of a tiny percentage of advanced colorectal cancer patients who have yet to kick the bucket in spite of the cancer having spread to my lung, liver, brain and bones (believe me, I’ve scoured many online patient forums).

Though the prognosis and general outlook may be grim, I still take pride in how far my faith and current medical advancements have brought me in terms of defying the odds and statistics.

Stay tuned for more posts about each of those experiences!

[trishatrixiethefabulous]

Finally going now. First anti nausea meds then #chemo11 # Luecovorin then will get the pump w #5FU aka #Flouracil to go home with for the odd 46 hours. Then back on Wednesday to remove. #process #Folfox #CancerWarrior #Chemotherapy