Camptosar: Week 1

The days immediately after treatment are not the time for clear-minded, sharp writing. But during these precarious and emotional times, keeping this blog current seems more important than my grammatical shortfalls. For whatever reason, though, this post has been particularly stubborn, requiring four days and way too many drafts!

Monday was a milestone in my cancer journey: day one of a new treatment.

Camptosar, FDA approved in 1996, is a brand name for irinotecan (eye-rin-oh-TEE-kan). It is a chemotherapy drug most often used for colon and rectal cancers. The most common side effect is diarrhea, which can be severe if not managed aggressively. The onset can be early or late. On Wednesday I began to experience the late-onset side effects. The cramping pain was much more debilitating than the diarrhea. But following a strict schedule of huge Imodium doses did the trick, and now I’m right as rain (I think). As with most chemotherapies, there is a laundry list of other possible side effects. This comprehensive list is courtesy of the ACS. My main side effect was just feeling like crap. Because that’s what chemo does: it makes you feel like crap. (Eloquent, I know…)

This is my third line of chemotherapy. I keep track of my cancer treatments and other milestone dates using a cool site called Timeglider. The events there link back to applicable blog posts too, in case you decide to check it out. 

Beginning in May 2012, I had a cocktail of carboplatin, Alimta, and Avastin to try to control aggressive lung cancer growth. Although I enjoyed the treatment schedule (infusion once every three weeks), I experienced no improvement in my condition.

In July 2012, I began Gemzar (gemcitabine). This weekly infusion was very difficult for my body to handle. I had some nasty, uncommon side effects and was rather relieved when I learned it wasn’t doing anything to help my cancer.

Now I am revisiting the chemotherapy well in an attempt to halt the cancer that has metastasized to my brain. My doctor chose this drug because it has the best chance to be effective (not because it’s going to be the gentlest). The odds of it benefiting me? Who knows. And when my doctor saw the question coming, he simply responded: “There is no other Jessica Rice.”

I began to press for more information. His next answer – the Camptosar brain met stats and his experience with a standard patient – was composed and sitting at the tip of his tongue. But I stopped him. I knew only his first answer was accurate.

There is no one else who has what I have, has responded to various treatments/trials in such ways, and perhaps, has even lived long enough with this very aggressive lung cancer to try what I’m attempting in controlling the growth of new brain tumors. I guess I’m pretty special, although not for the reason I would prefer!

My doctor once told me that every lung cancer patient – if able to live long enough – will get brain mets. Most don’t ‘get the chance,’ for lack of a better phrase. And for those with slow-growing varieties of lung cancer, that could be 10+ years! (I don’t want to incite any unnecessary panic.)

On Monday morning Seth and I arrived on time for my 8:15 appointment, and we didn’t wait longer than 10 minutes to be escorted to the back. I stepped on the scale and unwisely peered at my weight before heading into the exam room. Talk about adding insult to injury! (I should stop eating so much and retaining fluid once I’m off daily steroids.)

One nurse began the routine questionnaire while another accessed the port embedded in my upper right chest. The thick Huber needle didn’t hurt much. They flushed the direct access catheter with saline, and I made my standard funny face. I am one of many patients who can taste when some things are pushed into the bloodstream. Saline flush isn’t yummy, but at least I know when a vein is hit correctly!

The next step is to draw blood so they can run my ‘counts.’ This tells the doctor a number of things and assures that I am indeed healthy enough to receive treatment that day.

The nurse pulled back on the syringe. The saline was now tinted bright red, but it wasn’t pure blood. She pumped the syringe back and forth, back and forth. No blood.

(sigh) Sometimes ports are stubborn. And during my past two office visits, I’ve had to do some gymnastics to get the flow started. In 18 months of port ownership, I have had a real problem with it only once.

We tried the moves that nurses swear by. I gave myself a bear hug, stretched my neck around, lied down completely flat, raised my arm at various angles, and shrugged my shoulders. They flushed more, tried some heparin, more flush, a larger syringe. But then part of the plastic hub snapped off.

(sigh) They would have to remove the needle and stick me again. This one hurt briefly, but that wasn’t why I was fighting back tears.

I had remained quite calm for the first half hour, but I was starting to break. When a device implanted in you doesn’t cooperate, you’re allowed to panic. (I wrote that rule.) It didn’t help that two people had been hovering extremely close to me for a long time. I was physically overwhelmed by the invasion of my personal space. Knowing that I was reaching the end of my rope, we decided I would see the doctor and complete the rest of the exam before trying anew.

The port trauma was enough to keep me pretty quiet during Dr. Roush’s exam and our Camptosar conversation. He did the entire ‘this is your new drug’ song and dance, but much of it was a repeat of our phone conversation. He was thorough, and I didn’t have any new questions.

As I mentioned earlier, I refrained from pressing him for Camptosar odds. And I was in such a ‘bad place’ by this point, that my brain couldn’t have generated any positive conclusions from any data he could give me anyway. He finished his exam and asked the nurses to “tPA” my port.

tPA, tissue plasminogen activator, probably does a lot of things. But I know it as “Drano for ports.” A small amount gets injected just far enough to journey to the end of the port catheter: the tube that terminates at the top of my heart. Once there it breaks up the fibrin sheath that can develop over the end of the line. The build-up is like a flap. When fluid goes in it pushes open without a problem. But when trying to withdraw fluid (blood), the flap gets sucked against the tube end and nothing can come out.

The nurse injected the tPA, and I waited for an hour. Then… POOF! Lots of easy flowing, dark, rich, good, yummy blood. Yay!

I was exhausted and ready to go home, but the day’s events hadn’t even begun. My bloodwork was run, Dr. Roush approved my orders, and pre-meds were started. We were exactly two hours behind schedule.

It took more than four hours for the rest of the drugs to be infused. The pre-meds were the same I received with Gemzar: Aloxi, Decadron, Ativan, and Pepcid. Camptosar came last and took two hours for infusion. We had to slow the drip a little when my nose started running and eyes got watery. Moving forward, this will probably be a four to five hour day depending on how busy it is in the infusion room.

This is a weekly treatment given 3 weeks on, one week off. It is the same schedule I was supposed to follow with Gemzar, but my body wouldn’t tolerate three consecutive, weekly treatments. This is a totally different drug, though, so I go in expecting the best and this schedule:

Treatment Dates:
Oct 20, Oct 29, Nov 4
Nov 18, Nov 25, Dec 3

After those two cycles I will have an MRI of the brain, and the radiologist will assess my progress. Hopefully there will be a) no new brain tumors and b) less suspicious “brain lint.” If brain tumors continue to grow, that will be the end of my Camptosar experiment. I’m not sure what drug or trial would be next. Those are concerns for another day.

This week I’ve focused only on recovering as quickly as possible. Today is all about packing and travel. The wait is over, and it’s time for our awesome weekend at the NASCAR races!

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17 responses to “Camptosar: Week 1

  • brockstacy1978

    Have an amazing time at the race. Saying you are very deserving of that would be an understatement. Your strength amazes me. You are in my thoughts and prayers!!!
    PS. I am Kim Flatts friend in case you are wondering who the heck I am 🙂

  • Ed

    Enjoy the races! I know you have been looking forward to this for quite a while. Keep up the fight – as the only Jessica Rice you are, as always, setting the standard!

  • Tori

    I hope this drug turns out to be the one for you. Kind on your body, devastating to the cancer. Best of luck!

  • costellocnm

    Have a Great time at the races. Savor all the Fun & try to stay in the present…enjoying every second of the good times,be in the moment. Wishing you much success with this new treatment.We are all here cheering you on.You are NOT alone in this. Hugs !

  • Kim Flatt

    Have 1 hell of a time & enjoy every minute of your weekend!!!! Give my date a big hug & I know he’ll take great care of you during your travels! Get your “redneck” on & I can’t wait to hear all about it 🙂 XOXO!!

  • Angela Evans

    Jessica–U R one brave,gutsy lady. I so wish U weren’t dealing with this lung cancer,much less the complication of the Brain Mets. As a R.N. I understand the medical side of your disease,& even the emotional side up to a point. Reading your blog draws me into your world,& makes me think of U more in terms of a friend,albeit a cyber friend. I ADMIRE your attitude
    and the TENACITY with which U R fighting this disease. Go and have a great,WONDERFUL time at the NASCAR Races this weekend. If anyone
    deserves to have a good time,you certainly do.

  • Pam Gregory

    Praying for you, Jessica. Thank you for your updates and your candor. God bless, Pam

    Sent from mobile device.

    >

  • Mary Ann

    Thank you for sharing such personal stories with us. Every one of them helps me understand how to better help people I know who are struggling. Have a ball at NASCAR! Prayers to you and your family.

  • Wendy Wilson

    I was fighting against a stage IV cancer and i won, lucky my husband who helped me all the time.I think it is very important that family support to win, because i was very weak;really helped me participate in one group of victims of cancer, so my mood improved, also helped me a adviser of advisercancer-diseases.com.I recomended not surrender, because sometimes the first treatment does not work as me, and change doctors if it is necessary.Read positive thinking books gave me more energy.During my cancer,i changed my diet,now i eat vegetarian organic food(now i not eat meat).I think is a set of things that help me.
    Xoxo
    Wendy

  • Tia Jayne

    Jessica and family – You are in my thoughts. I hope you enjoy your trip to Nascar. I am nsclc 3A, 18 months from surgery. I have 6 months till my next scan and it feels like a vacation. Thank you for your writings — I look forward to them very much!

  • Katie Petty

    I just started following your blog. My husband was diagnosed with stage iv lung cancer Oct 24, 2012 and reading your blog has helped me understand a little of what he might be going through inside. He will also be at the NASCAR races this coming weekend with his friends and brother, a boys weekend so no wives allowed. I hope you both have a fabulous time and are allowed to truly enjoy yourselves! Thank you again for sharing, you help so many people to feel like they aren’t alone in the fight.

  • Sabina

    Hi Jessica,

    So sorry I haven’t commented for a while but I’m having some health issues of my own right now that are sucking nearly all of my energy. Although I saw the headings of your blog posts pop up in my mailbox, I had to leave you in more capable hands than mine for a little while. I know you are surrounded by many who love you, so I didn’t feel too guilty. I feel a little better today so I thought I would catch up with you. Please don’t ever think that I have “lost interest” in you if you don’t hear from me for a week or two. I will catch up eventually, puffing and panting and full of apologies.

    Your blog is as close as I ever want to get to what it feels like to undergo chemotherapy. Your descriptions of the frustrations of your malfunctioning port and how it was ultimately cleared (Draino-for-ports is a very good analogy), and how uncomfortable it is to have others, even if they are medical professionals, invade your personal space for extended periods, are icky and touching at the same time. Even though you got a bit teary eyed, many people would have responded in a far more difficult-to-handle way. You are obviously made of the stoic stuff that medical staff wish all their patients were made of.

    I hope the results of this therapy exceed everyone’s wildest expectations and I will be praying for that.

    Since you have already posted a subsequent blog to this one about your weekend at the NASCAR races, I’ll comment on that separately.

  • amy lynn

    as one stage 4 NSCLC patient to another – have you talked to your doctor about the possibility of adding tamoxifen (1 pill daily) to your regimen? It’s shown to have a synergistic reaction with some of the other chemo drugs – i started it last week, and my dr is very optimistic. i’ve been following your blog, as a fellow patient.

    • Jessica Rice

      Hi Amy, thanks for sharing what you are currently trying. I’ll put this on my list as something to bring up the next time we have to try something else. Never hurts to ask, right?!

      Good luck xo

  • Kate

    In many ways Jessica, you are very fortunate. Few people in this world are awarded such a valuable opportunity to spiritually enrich their lives, and the lives of those around them. It takes one who is capable, confident, and motivated to lift the symptoms off of a disease, and replace it with personal milestones that were achieved along that same period. I hope you discover the ways in which your spirit has been bettered from this journey, and use this mentality to propel yourself towards a new and improved future. With your will….anything is possible. you go girl

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