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Support for caregivers: I feel helpless not being able to fix things
Pancreatic Cancer | Last Active: 6 days ago | Replies (51)Comment receiving replies
@199 you are amazing! I was reading through your threads to recall some info about you because you are definitely what I would call a “case study”. If I understand correctly, you are 75, you started out at Mayo, and then continued care with a hospital in your area that was a “Center of Excellence”? Exactly how many sessions of gem- abraxane have you had? You have neuropathy, but even after these many sessions your level of neuropathy is tolerable and hasn’t affected your activities of daily living significantly? Are you still getting the dexatron prior to the abraxane? You receive acupuncture to help lessen the neuropathy? Your mutations are KRAS12D and TP53(which I think is the aggressive one since it has no cure). Did you have any other of the pancreatic CA mutations where there was a base substitution of “unknown significance”? I recall you believe in prayer. I must share your info with my oncologist as I’m a bit annoyed that he keeps repeating “you’ve gone longer than most on the chemo regimen you’re on”. I was diagnosed Sept 2022 as stage 2 and got surgery (distal). I got 5FU chemo 12 sessions in 2023. Cancer came back after 4 months. I got about 24 sessions of gem-abraxane in 2024, but then neuropathy in driving foot started to get pretty bad. I got SBRT in October 2024 with good results that lasted until April 2025. Was on only gemzar from Jan 2025 to present. Gemzar by itself has not been effective for me. I want to say a “new” liver lesion appeared, but my guess is that it’s really the lesion that was identified in December 2023 that shrank with chemo to a size no longer seen on scans and no longer “shedding”, but not decimated. I think it’s the same because it’s in the same segment 5/6 of liver. Anyways, you are a nurse as my mom was (practical nurse, though) and I pray and hope continued good health for you!!
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@mnewland99 Thank you. I am 75. I started out at Mayo, Jacksonville and was told to find a "local oncologist". I saw him in Savannah, Ga 2 days later as I had made the appointment when I first found out I had pancreatic cancer at the end of May. I do not know if Anderson @ Memorial Health in Savannah is a "Center for Excellence". The doctor said he has access to Mayo, and he is with AON (American Oncology Network). I have had as of May 8 a total of 69 chemo treatments: 44 until Jan or 2024, then restarted May 2024 with 25 more. All sessions have been Abraxane and gemcitabine. I started with 2 weeks on and one off then my doc changed me to one week on and one off due to increasing fatigue. I have neuropathy of fingers and feet to above ankles. Acupuncture does help. Wish I had known about it sooner. I also take Percocet (generic), Tramadol & Colace 3-4 times a day for neuropathy pain. I do not drive since I did not feel the pressure on the gas and brake & was afraid, I would not react appropriately & timely. Now, I would not drive taking pain meds. I do use a cane when out to lunch with a friend and at night to use the bathroom since I do sometimes feel like I am not so balanced. I do not dust as much as I would like but I do when I get a burst of energy 🙂 I have noticed that my typing is getting worse lately, old age? or neuropathy? I blame most things on chemotherapy 🙂 I still get Decadron (lowered from 10 mg to 5mg) mixed with Aloxi (250 mg nausea prevention) & plain IV for 30 minutes, then Abraxane 200mg followed by gemcitabine 2000mg each over 30 minutes with a line clear of 5 minutes. I have TP53 and KRAS G12D mutations. I do not know of any other mutations. My first cousin, female, on my Dad's side died from pancreatic cancer and my Mom's sister died from pancreatic cancer. I do believe in the power of prayer. When someone asks what they can do for me, I tell them to pray. I think it works! My oncologist told me he uses me as an example & that he also has a 5-year patient still "kicking" with pancreatic cancer. I had been told I was stage I and lucky I found it so early & then got the test results from Mayo & found out it was stage 4, non-operable due to metastasis to my lungs. My oncologist told me I would never be "cancer free" , but there can be times when I can take a "break" like when my CA 19-9 is normal. Stopped black tea after reading study on the internet how CA 19-9 was affected by black tea. What is SBRT? Lung lesions shrank with chemo and CTs show no new evidence of disease. Get CT every 3 months, CBC before every chemo, CA19-9 2x month & complete metabolic panel (CMP) 1x month. Have gained weight with chemo 🙁 Prayers for you too! If you want to talk, let me know. Denise