Husband had Whipple surgery and chemo: He's uncomfortable

Posted by joanalc @joanalc, Jan 31, 2023

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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jk77 | @jk77 | Jul 6, 2023

In reply to @stageivsurvivor "Oxaliplatin is made by different manufacturers and not affected by the supplier that the FDA did..." + (show)

@stageivsurvivor : You're a rock star, both for providing so much info and for your survival. Sending thanks and wishing you all the best.

jk77 | @jk77 | Jul 6, 2023

In reply to @stephenkogler "I feel your husband’s pain. I’ve been treated at Johns Hopkins Hospital in Baltimore, Maryland. Diagnosed..." + (show)

@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.

jk77 | @jk77 | Jul 6, 2023

In reply to @wjk "I just had my first round of Folfirinox yesterday (Friday, June 9). What type of hand/foot..." + (show)

@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.

jk77 | @jk77 | Jul 6, 2023

In reply to @dgoinvestments "No side effects from radiation except the oral chemo pills. I was nauseous for all my..." + (show)

@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 | @wjk | Jul 6, 2023

In reply to @jk77 "@wjk, I'm wondering why they didn't biopsy the tumor when they inserted the stent. My story..." + (show)

Yes, 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.

jk77 | @jk77 | Jul 6, 2023

In reply to @wjk "For what it's worth, over the past couple of weeks I've read and compiled numerous online..." + (show)

This is a great resource. Thank you very much! Best wishes.

jk77 | @jk77 | Jul 6, 2023

In reply to @alufa22222 "I am on CHEMO. Lost almost 20 pounds but now back up to 123 from a..." + (show)

@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.

jk77 | @jk77 | Jul 6, 2023

In reply to @wjk "Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8..." + (show)

@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.

jk77 | @jk77 | Jul 6, 2023

In reply to @icelander19 "I was on oxaliplatin too and was supposed to get 12 doses. We had to quit..." + (show)

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.

jk77 | @jk77 | Jul 6, 2023

In reply to @stageivsurvivor "I have frequent CT, MRI scans and ctDNA blood surveillance has been done since I entered..." + (show)

@stageivsurvivor

I have frequent CT, MRI scans and ctDNA blood surveillance has been done since I entered the trial in October 2014. I have MRI done for abdomen and a low dose CT for lungs every 6 months. Any evidence of liver tumors is long gone.

For boosting immune system, exercise of walking/bike riding. My N.P. recommended a multivitamin and an additional 50mg Zinc.

Doing more than 12 cycles of Folfirinox is not easy. If someone is below age 70 and of robust physical condition and has been tolerating Folfirinox very well with minimal side effects, oncologists may suggest going beyond 12 cycles. I advocated for aggressive treatment with my oncologist before treatment ever started. The tumor board decided on palliative care with Gemzar. I was never told just how serious my situation was and why the Tumor Board decided on Gemzar. At the three month mark when it became evident Gemzar did not do anything, I looked my oncologist in the eyes and again pointed out my commitment to doing Folfirinox with as much as and as long as my body could tolerate it. I got no resistance to my request. Because it was assumed I would be going well beyond 12 cycles, my oncologist wanted to lessen the chance of developing peripheral neuropathy. This is why he did the dosing starting with six cycles of Folfirinox followed by six cycles of just 5-FU/Leucovorin as resting cycles. Despite only getting 5-FU, I continued to have significant shrinkage which surprised him. I never did Folfiri. I had such a good response on 5-FU alone, that I likely would have had equal or better with Folfiri but at increased side effects to tolerate. I have the BRCA2 mutation and it is known to respond well to oxaliplatin so that is why I ended up getting 24 cycles with it.

Many people are concerned with quality of life and why the oxaliplatin is stopped. My attitude was…you don’t have to worry about quality of life when you are dead from pancreatic cancer. It doesn’t matter . My focus was on surviving and figured if I ended up with permanent peripheral neuropathy, it would be my “new normal” I would adapt and deal with it. I’m a lot more productive being alive than dead. Every day working in a hospital I saw patients that endured horrific accidents yet were thriving and making the best of their “new normal”. They were my inspiration. I realized I didn’t have it so bad. I learned to practice gratitude and had no problems finding something to be grateful for every day which helped me deal with the adversity. I have always been optimistic since early childhood.

I did not have perinural invasion but did have 11/22 lymph nodes positive, and cellular morphology was poorly differentiated and high grade as well as portal vein invasion. The largest tumor that developed in the liver out of six sizable ones was 4.2x3.8cm and on the Hepatobiliary tree which made it inoperable and too risky to use any ablative techniques.

In summary, self advocacy is very important. I learned as much as I could to understand what I was dealing with. I concerned myself with what I could control. What I couldn’t control was the responsibility of my oncologist to deal with. I never sat in the examine room with that “deer-in-the-headlights look. I always engaged and wanted to make it clear I was going to be an active participant in the team effort.

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stageivsurvivor, thanks for a very helpful post. I wish you well.

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