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Exhausted!

abita's picture
abita
Posts: 740
Joined: Dec 2017

Had my 10th erbutix/irinotecan infusion Tues, and cannot get enough sleep and rest. I am so exhausted. I wonder if the fatigue is cumulative, or if it is because my flight back from my reunion was 12 hours before my infusion Tuesday and the combo of fatigue from vacation is making this rounds fatigue worse.

SoCal42
Posts: 78
Joined: Jul 2017

I don't think I have cumulative fatigue with FOLFIRI/Erbitux, but it certainly doesn't get any better either! Just finished the 11th cycle. My skin problems with from the Erbitux are very cumulative. How many total cycles are you supposed to complete?

abita's picture
abita
Posts: 740
Joined: Dec 2017

My doctor has not given me a timeline, and I guess I am too afraid to ask. At first, we were just hoping it works. I get a scan this next week, and am hoping it still works :) I have had 10 so far. I itch a lot and have the pimples about half the time. I have found creme de la mer helps with the face issues. The dermatologist prescribed me topicla steroid, which I have to remember to pick up. I guess all the traveling is contributing to the fatigue this time.

SoCal42
Posts: 78
Joined: Jul 2017

I'm thinking after a new scan is probably a reasonable time to ask about the plan. When my diagnosis converted to metastatic, my doctor was really clear about planning to do twelve cycles of treatment. I never asked her "What happens after that?" until more recently, but I was definitely counting down on those twelve cycles. I eventually reached the point where I needed to know what would happen next.

abita's picture
abita
Posts: 740
Joined: Dec 2017

It is encouraging to me that your doctor thinks the chemo is enough to rid you of tumors. I hate that "unless they are removed surgically, you can never be cured". I am hoping my targeted drug, erbutix, eventually "cures" me.

SoCal42
Posts: 78
Joined: Jul 2017

She gave me about a 5%-10% chance at an actual cure because of the low number of mets and the fact that nothing else new has shown up for more than a year, and radiation oncology also went after those two mets with SBRT. But she also made it clear that the more likely goal is suppression and hope that better treatments continue to be developed. I would be thrilled just to get off active treatment for a little while. I also recently read a study that said if patients stop Erbitux for a while, it may reasonable to restart it again later on, and it may continue to be just as effective.

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