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Care Plans or Protocols
Are there any written protocols or care plans for getting Gemczar & Abraxane? I have been on this combination from July 22, 2022, until December 28, 2023, with a 4-month break then on it again from May 2024 until 18 December 18, 2025. (44 chemo treatments the first time around and 41 the second time).
Seems like a lot of chemos to "maximum tolerance"! I felt so toxic by this second go-round that I am just now feeling human again!
I am wondering if I have been an experiment or is this normal?
I am wanting a protocol or care plan this time around. Already met my new oncologist and told her I will NOT go 40+ rounds again.
Am I being unreasonable?
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@199 My wife is on a new trial for another first in human KRAS targeted drug.
I have a background in clinical science and believe this new class of therapy and antibody drug conjugates (targeted chemo) are going to greatly improve outcomes over the next 3 to 5 years.
Just hoping my wife holds on long enough to benefit from these advances.
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4 ReactionsThere is no fixed lifetime maximum for Gemzar plus Abraxane. The standard protocol (from the MPACT trial) is treatment on Days 1, 8, and 15 every 28 days, continued until progression or unacceptable toxicity.
Most patients average about 6–8 months in studies. You had much longer exposure — not unheard of, especially if it was working — but cumulative toxicity is real. Fatigue, neuropathy, and marrow suppression build over time.
Wanting:
A defined number of cycles before reassessment
Dose adjustments if toxicity rises
Planned breaks
A clear stopping point
is completely reasonable.
Saying, “I will not do 40+ rounds again,” is not difficult — it’s informed.
You deserve a structured care plan this time, with quality of life built into the strategy.
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5 Reactions@mcharlesfrancis, your post covers a lot of information I was seeking. I had been wondering if I had not worded what I wanted in the right terms. When Mayo doctor suggested the 1,8, 15 day treatment every 28 days in July of 2022 my local oncologist said that he found older patients did not tolerate the Gemzar + Abraxane as well so he went with the 2 on one off every cycle. After over a year we went to one on, one off which I tolerated better. I did find one article talking about being treated 6 months (6 cycles) but not much else was said. My sister-in-law (also a retired nurse) said I should not word it so much like a nurse using "protocols & care plans" terminology. I told her that pancreatic cancer patients understand more than she gave us credit for since we seek information & watch for new developments.
I especially love you "Wanting:". After 4 years & now with a new oncologist I need the answers to your wanting list. At 40 rounds last time I was becoming so toxic it took from 18 Dec to the end of January to finally have some quality of life & energy. My CA19-9 went from 69.8 (Dec) to 171.7 (Jan. 30th) to 493.3 (Feb. 12th). My oncology team went nuts with the Jan to Feb increase & I will be having a CT tomorrow (instead of in 2 more weeks). I had a "rough" January with ER visit BP (220/109), "chronic" rib fractures bothering me & various other issues, so I am not worried about CT. In fact, I told my nurse case manager that the results would probably be similar to the last 15 + CTs. Will see tomorrow 🙂
Cumulative toxicity is no joking matter! 🙂 No one is concerned that my WBCs jumped to 18.9 or my BUN Creatinine ratio is at 35. I kept saying last December that the only thing I did not do was glow in the dark, but only I found the humor in that 🙂
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