When to "stop"

Posted by whilted @whilted, Apr 8, 2023

Hi everyone,

After my mom came back from her consultation at Mayo in February with positive news, I felt like our family could finally have a little vacation from this disease. While my mom is going through radiation right now, she finishes in two weeks. After that, we're off to Europe. That's all I was thinking about when she started radiation and chemo pills.

Recently, however, we had an appointment with her oncologist (whom we have not seen in about a month), and that just reignited the worries and stress I had when we first started this journey. My mom's last radiation session is on April 24 and our trip is from May 29 to June 16. That would be well over a month without any treatment. But what else can we do? Additional chemo? But would additional chemo even be beneficial at this point? Both my mom and I have that mindset that there needs to be constant treatment for us to have the best possible outcome, but clearly treatment has to stop at some point. She is not experiencing any symptoms--no pain, no loss of appetite, etc. Am I insane for wanting my mom to do 1-2 sessions of Folfirinox before our trip so she has something in her body to kill any lingering cancer cells? I guess this all stems from the fact that my mom does not qualify for surgery, which is the only "cure."

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robee | @robee | Apr 11, 2023

Hi
I was diagnosed as stage IV when they found one tiny spot on my liver and not eligible for surgery due to this and vein and artery involvement. I had my 18th round of chemo yesterday. Started on Folfirinox at the end of June 2022. they removed irontecan due to slurred speech after the 4th session but added it back in at a slower rate with benedryll in Jan of 2023. JH suggested this back in Oct but local doc kept me off it until the Oxiliaplatin had to be removed due to neuropathy. I should have pushed for it to be added back in Oct but was a bit scared of the side effects. So far the slower rate approach has worked.

I was too sick from the pancreatitis to discuss other options when I began chemo but was told by oncologists that Folfirinox is the most effective. I was also told that this cancer WILL eventually mutate and I will have to go on another chemo when that happens.

@thawk32 did this happen to you-the mutation?

thawk32 | @thawk32 | Apr 11, 2023

My Oncologist didn’t say anything about mutation. My first 11 chemo treatments had Oxiliaplatin in the mix with FU5. He then dropped Oxiliaplatin because of it was wearing on me and I got neuropathy in my feet. I didn’t get it in my hand. I have had a total of 41 treatments over two years. I have taken some breaks for vacations which is good for the body to recover. Just last week got good news from my MRI that said no mass was identified. My pancreas cancer is a rare form called Acinar.
Sending my prayers to you! 🙏🏻🙏🏻🙏🏻🙏🏻

whilted | @whilted | Apr 11, 2023

In reply to @thawk32 "My Oncologist didn’t say anything about mutation. My first 11 chemo treatments had Oxiliaplatin in the..." + (show)

That is awesome news—very happy for you! What stage were you? Just wondering why you opted for so many chemo sessions. I do want my mom to continue chemo even though she is not stage IV to reduce the risk of it coming back.

thawk32 | @thawk32 | Apr 11, 2023

In reply to @whilted "That is awesome news—very happy for you! What stage were you? Just wondering why you opted..." + (show)

I continue with my treatment because it was working and I didn’t have many side effects. The only symptom Is I have fatigue about three to four days after treatments. I was always worried that if I stopped the cancer would spread.

thawk32 | @thawk32 | Apr 11, 2023

In reply to @thawk32 "I continue with my treatment because it was working and I didn’t have many side effects...." + (show)

I was stage 4 as I had a few small spots on my liver and stomach lining.

whilted | @whilted | Apr 11, 2023

In reply to @thawk32 "I continue with my treatment because it was working and I didn’t have many side effects...." + (show)

My mom had fatigue and occasional nausea and vomiting, but nothing she couldn’t handle. She was still gardening and running errands with her Fanny pack on! She also had oxaliplatin removed due to neuropathy after her 11th session. I assume you have been on FOLFIRI ever since?

thawk32 | @thawk32 | Apr 11, 2023

In reply to @whilted "My mom had fatigue and occasional nausea and vomiting, but nothing she couldn’t handle. She was..." + (show)

Yes on the FOLFIRI every other week at the Cancer center. Then I go home and get hooked on a slow dose of FU5 for 36 hours.

robee | @robee | Apr 12, 2023

In reply to @pat125 "Hi Robee, Good on you! What was your stage? Was it resectable? How many sessions of..." + (show)

Stage 4 and unresectable. Just finished 18th round of Folfirinox minus oxilaplatin. Was told this is the “gold standard” but apparently from all the comments in this blog, the administration of the chemo can vary.

Have you asked ur oncologist about administration at a slower rate or reducing the amounts to make chemo more tolerable? Those were suggestions I received when I went to JH for a second opinion. Unfortunately JH is too far for me to travel to for chemo every other week.

bethf | @bethf | Apr 12, 2023

In reply to @thawk32 "I’ve been on chemo for two years and doing great with the treatments. I stoped my..." + (show)

which chemo are you doing?