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Cancer: Nothing about this is normal.

Cancer: Managing Symptoms | Last Active: Feb 13, 2022 | Replies (26)

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@bb21, thanks for the extensive comments. You sound like you are doing well and have found things that are helpful. I am very happy for you. Everyone's case is different and a lot has to do with how many treatments, types of treatment, surgeries and of course the virulence of the disease. We have 3 oncologists, 3 nutritionists, 2 therapists, 2 support groups etc. But my wife just hasn't gotten any breaks. We've tried supplements, protein ingredients, minerals, prescriptions, everything that has been recommended and most don't get the expected result. My wife went from healthy and able to weight train 3 times a week, bike 20 miles or more a couple times a week to barely strong enough to walk from one end of the house to the other. After her first 9 folfirinox with oxalyplaten treatments she didn't even look like a cancer patient. Even after her distal and more she still looked well. She went from 9 months of NED with low CA19-9 and no visible tumor to having a golf ball sized recurrance that was non-existent in a scan from 6 weeks prior. So back into treatment after more surgery. She had 18 GAC treatments and we were told it was ok to skip a treatment so she could recuperate an extra week and her CA19-9 tripled. Now she's on Onivyde every two weeks and it is rough. Believe me, i cheer her on every day and I still believe that she will be the one who makes it into remission. I don't know your background but I was a lifelong competitor... you name it sports or business and have always led by the philosophy that I'd never ask a teammate to do anything that I wouldn't do myself. My wife gets no breaks in this battle so neither do I. Breaks are a luxury we don't have. BTW, my wife is on other pancan discussion groups and I don't go on the ones shes on and she doesn't go on the ones that I'm on. Despite everything, my wife is still the sweetest, nicest person you would ever meet. Thanks for your concern and prayers.

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Replies to "@bb21, thanks for the extensive comments. You sound like you are doing well and have found..."

We, I, am here to support you and your wife in any way we can. I have only gone thru one surgery and recooped well other than the tough gut issues for ~6 weeks. I had to come off Folfirinox after 4 txmt's because my platelets couldn't keep up. We tried gemcytobine but it too impacted platelets. Then like your wife, I went from clean to metatesis to the liver. I have a rare genotype of Kras G12c mutation that occurs in 1-2% of Pancan. and it loves to become resistant to treatment. I went on a combo clinical trial with Amgen 510+ another+ monoclonal that targeted my genotype. Responded for 2 months and then the lesions became more pronounce so discontinued from study. I am now on Folfirinox liposomsal + Leucovorin+ 5FU. Tehy dropped the platin to try and avoid such a negative impact on platelets. So far good on platelets but with the progression of this disease I do have low hemaglobin and albumin. Will have my first CT on this tx in 2 wks. Don't expect big response but hope it keeps it in reasonable check. The clinical trial was rough as my skin broke out everywhere and got infected and became very sensitive and still is on face and arms.
I am so sorry your wife can't get some relief and didn't mean to imply that you had not tried many things. I just wanted to pass on things I had tried along with my team's guidance and what helped. I was not a very active person physically so it didn't hit me as hard on not being able to run or walk a lot. I do walk more now because it helps. I was very active in community service organizations and hands-on donation of my time and having to tune that back has been a challenge but I try to balance the physical efforts with the mental satisfaction it gives me. I volunteer to do more admin things at home if I cannot do the physical tasks. My husband does some light massages to my back as needed and it helps relax my tenseness. Keep your head as far above water as you can and do give yourself a break. Your team will benefit.