We are nearing the end of the cycle of David's first round of chemo, so I thought I should provide an update as many of you are wondering how things are going. David's particular chemo treatment is called Folfirinox. It consists of three different chemo agents (Oxaliplatin, Irinotecan, & Fluorouracil or 5-FU). There is much written on the internet about this regimen, so I won't go into details, but let's just suffice it to say that this is a toxic cocktail. We arrived at the infusion center at Moores Cancer Center at 8:30 in the morning where David first received about two hours of intravenous infusion (through his newly placed subclavian port) of antinausea medications, followed by two hours of infusion of the Oxaliplatin and then two hours of infusion of the Irinotecan. During this time period we received lots of information from the nursing staff and pharmacist about the drugs, there side effects, and what things we could do to minimize the side effects. Things were going well and David even had two friends come to visit him. About an hour into the Irinotecan drip, David had a reaction that we later learned they very occasionally see with Oxaliplatin & Irinotecan infused back to back. He was having cramps / twitches in the muscles of his legs, became flushed, and his speech was impaired because his tongue wasn't working properly. He got quite an immediate medical response (nursing staff, charge nurse, and his oncologist was standing at the end of his bed within two minutes of being paged!). They stopped the chemo drip and gave him Benadryl, which relieved his symptoms within about 20 minutes. They then resumed his chemo drip and he only noticed a much lesser reaction until the Irinotecan was done. Then he got set up with a pump of the 5-FU that he wore in a fanny pack to be administered over the next 46 hours. It was a bit worrisome to come home with a chemotherapy drug being administered and a bit confining to be constantly attached to a fanny pack while trying to go about your daily activities (but oh so much better than having to stay in the hospital!!). The following day we went back to Moores to have a 5-FU blood level drawn while the drug was still being infused so they can see how therapeutic the dose was that he received (we don't know the results yet) and whether they need to increase or decrease the dose for the next round. Then we went back the day after that to have the drip disconnected (oh sweet freedom!).
I think David handled the first round of chemo very well!! Of course I understand that David's oncologist went a little light this first time (decreased the dose of Irinotecan administered and didn't infuse a bolus of the 5-FU prior to hooking up the continuous drip, which I guess they sometimes do), but I still think he handled the chemo well. Biggest change is his energy level. He ran the San Diego Rock 'N' Roll 1/2 Marathon on June 2nd, and now trying to run a lap at the high school track makes him feel lightheaded and out of breath. But, he has managed to continue walking every day (usually for around an hour) and sometimes twice a day, rides his bike on a trainer that a friend of his set up in our garage, and does some stretching and light weight work to try to keep his strength up. He has had to give up his beloved swimming and time working out at the YMCA because of the potential for picking up a bug from someone there. So, we have converted our garage into a makeshift gym, and he hits it about every day! His appetite has remained good, although his diet has been altered tremendously because of the chemo. The first several days following chemo he is to follow a low residue diet to protect his GI tract, and he can't have any fresh fruits (except bananas) or vegetables during treatment because of the potential for infection. So, all of the fruits and vegetables that he eats must be canned or fully cooked -- hard at this time of year when there are so many tempting fresh fruits and vegetables available. Also, he can't eat any chocolate during the first week after chemo because it can interfere with the take up of the 5-FU -- now that is a dietary restriction that really bites!! Over the course of this first chemo cycle he has had some of the lesser seen side effects of hoarseness, hiccups (they only last for a few seconds, but are very strong when they occur), and a couple of days of swelling in his feet and ankles. Just yesterday he developed one of the more common side effects (it is a side effect of each of the chemo meds he is on, so what do you think is going to happen when he triples that effect!)-- sores in his mouth. Just started a prescribed miracle mouth rinse this morning, so hopefully that will keep this from progressing.
So, next up is we meet with the oncologist on July 9th and get new blood work to make sure that all of David's blood parameters are saying it is okay to go forward with the next chemo infusion on the 10th. The plan is to have a chemo treatment every two weeks (David's oncologist has already warned us that we will be delayed at some point on this course because the blood levels will require a delay). The regimen will stay the same as far as the drugs administered (maybe at increased or decreased doses depending on blood parameters) -- a full day at the infusion center followed by a 46 hour drip of 5-FU at home. David's youngest brother, Carl, is going to be with us during a good portion of the second round of chemo, for which we are extremely grateful. Probably at around two months into treatment, there will be a repeat of David's blood level cancer marker (CA 19-9) and an abdominal CT to see how things are looking, and then decide how to proceed dependent on that information.
Again, we want to thank you all for your positive thoughts, prayers, cards, emails, texts, books, funny movies, and food. We couldn't do this without your support and we are truly grateful for all of the kindnesses that people have shown us!
One of David's swim buddies has set up a blog as an avenue for us to communicate with all of you and vice versa. Check it out at http://dhagerblog1.blogspot.com/ Maybe I'll be able to post short entries there on a more regular basis and keep you all from having to read these long winded emails from me!
FIGHT THE FIGHT!!!! Janet
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