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Husband had Whipple surgery and chemo: He's uncomfortable
I'm trying to be supportive, but he's to undergo chemo for 6 months, and have 5 to go. He's uncomfortable much of the time. Help!
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icelander, a note on Folfirinox (which I'm on) from the National Cancer Institute:
FOLFIRINOX combination:
FOL = Leucovorin Calcium (Folinic Acid)
F = Fluorouracil (5FU)
IRIN = Irinotecan Hydrochloride
OX = Oxaliplatin= oxalipatin
I'm sharing this bc it's important for us to use accurate terms as we advocate for ourselves. (It's not possible to be "on irinotecan and 5FU and folfirinox" bc Folfirinox comprises irinotecan and 5FU [fluorouracil].)
Best wishes.
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1 Reaction@wjk, I'm wondering why they didn't biopsy the tumor when they inserted the stent. My story has some similarities but some differences.
On 1-2-23, I began itching all over. It worsened, plus I became fatigued and lost my appetite, so I finally went to an ER on 2-13-23. I was jaundiced (didn't know that bc my apt. is so dark), my urine was dark, and I'd lost 14 lb in 6 weeks (I'm 5 ft tall, and that's a rapid loss for me).
Docs determined that there was a mass in my pancreas (I didn't think to ask its size) and that it was blocking my bile duct (hence all the itching -- elevated bilirubin). A stent was inserted, and during the ERCP the tumor was biopsied. My CA 19-9 was 387. Medication (cholestyramine, then ursodiol) helped with the symptoms and might have helped bring down my bilirubin (though I think the stent mostly did that).
I've just completed my 6th round of chemo (Folfirinox); after my 5th, my CA19-9 had dropped from 387 to 163. It's not clear whether I'm a candidate for surgery (there are some ambiguous nodules on my lungs that could indicate metastasis). At present, the plan is for at least 2 more rounds of chemo; my onc. is discussing my case next Wed. with the hospital's GI conference, to determine the next step (could be radiation, or radiation + surgery, or surgery, or more chemo).
I don't know whether any of this is helpful; I wish you all the best.
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3 Reactions@alufa22222 : I'm also recommending Bolthouse Farms Protein Plus and Orgain -- fewer lab chemicals than Boost or Ensure.
I dilute the Bolthouse with equal parts soy milk and dairy milk, bc Bolthouse has a lot of sugar. I haven't yet tried the Orgain, but I think it's the "cleanest." I feel strongly that good nutrition (very little added sugar, as few lab chemicals as possible) makes a big difference, although I acknowledge that eating well is a huge challenge, esp. for those of us who live alone and have no energy to cook most days.
Wishing you a good result.
This is a great resource. Thank you very much! Best wishes.
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1 ReactionYes, your comments are helpful. Since my earlier post I've had another ERCP, stent replacement, as well as an EUS, biopsies, CT Angiogram, and exploratory laparoscopy with peritoneal wash. (Like you, my initial stent relieved most of my symptoms in about a week.) I'm diagnosed as Adenocarcinoma, Stage 1B. The tumor is not entangled badly with the nearby major vein and artery. Adjacent nodes are fine and there is no indication of metastasis. Intra-abdominal scrapings during peritoneal wash were negative. My 3rd Fulfirinox infusion happens in a few days. My CA 19.9 went from 316 to 641, then down to 321 10 days ago. Following 6 or 10 more Folfurinox infusions I anticipate having the Whipple, with a possibility of 3-4 weeks of radiotherapy prior to surgery if needed.
Sounds like we are on similar paths though the course of our treatments are not firm, but is seems like constant change is par for the course when it comes to pancan. Thanks for sharing. All the best to you as well.
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3 Reactions@dgoinvestments : May I ask whether chemo + radiation has made you NED, or whether you also needed, or will need, surgery?
I've had six rounds of Folfirinox, will have at least two more, and am waiting for my onc to discuss my case at his dept.'s next weekly conference. It's not yet clear whether my cancer has metastasized (there are nodules on my lungs, but a CT scan three days ago indicate no change in their size, which is good BUT not conclusive); if it has, then my onc. doesn't want me to have surgery.
For now, the options seem to be radiation, radiation followed by surgery, surgery, or more chemo. So far, the chemo seems not to have shrunk my tumor, tho it has lowered my CA19-9, from 387 to 163. So I'm wondering whether radiation + oral chemo can zap the tumor and get one to a state of NED. Thanks for your time and help; wishing you well.
@wjk : The info binder my onc gave me doesn't recommend a specific lotion or cream, but fwiw over the years I've had the best results with Neutrogena's Norwegian hand cream (better than the lotion, which is also good). The cream feels unpleasantly greasy for a few minutes (from the lanolin, I think) but that wears off as it is absorbed, and the cream works as nothing else has.
I haven't tried it during chemo bc so far, knock wood, no skin problems. Perhaps just make sure that your onc has no objections to it? (I think it's very safe -- I use in on my chapped lips, too -- but I don't want to inadvertently cause anyone any problems.) Best wishes to you.
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1 Reaction@stephenkogler : Thanks so much for this post. I live in Maryland, and if you're comfortable sharing the name of your oncologist, I'd be grateful.
I've been receiving treatment at a hospital that, according to US News, isn't nationally ranked in any department. This makes me nervous. I'm at this hospital bc my PCP was there and for other reasons (too complicated to explain), but as I await word next week about what happens next -- I've had six rounds of Folfirinox, and it's not clear whether I'm a candidate for surgery -- I'm nervous. I want to live!
My onc is bright and he has very good academic credentials, but it's hard not to be swayed by the HOPKINS name. (I shdn't be, bc I earned my grad degree there in a highly rated department that was, unfortunately, garbage for a few years, including mine, but I suspect that JHH is more stable than a JHU academic dept.)
Thank you, and best wishes.
@stageivsurvivor : You're a rock star, both for providing so much info and for your survival. Sending thanks and wishing you all the best.
wjk : I'm very graetful for your response -- thank you -- because you're so much more aware of everything that's being done for your care than I am for mine. I've been shockingly passive throughout this process so far, and reading this thread in particular has alerted me to questions that I need to ask my onc (well, his CRNP, whom I'll see in two weeks).
Thank you for helping me even tho *you* had asked for help; wishing you all the best.
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