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!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

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.

Jump to this post

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

stageivsurvivor | @stageivsurvivor | Jul 1, 2023

In reply to @ncteacher "Is that accurate about the oxaliplatin? The news stories I've read about a shortage of chemo..." + (show)

Oxaliplatin is made by different manufacturers and not affected by the supplier that the FDA did a surprise inspection on and shut down production of a different platin agent as a result of violations. I believe Sanofi has the rights to and is the distributor of the Eloxatin brand of Oxaliplatin, I haven’t found mention of this brand listed as in short supply.

markymarkfl | @markymarkfl | Jun 30, 2023

The FDA maintains a drug shortage list, with several views. Here is one: https://www.accessdata.fda.gov/scripts/drugshortages/default.cfm that has updates including cisplatin and carboplatin this week. I just got my 12th dose of cisplatin yesterday. Yuk, but grateful to have it.

Their full list is here: https://www.accessdata.fda.gov/scripts/drugshortages/default.cfm
There are supposedly around 14 cancer treatments in short supply according to NBC, but I couldn't find details from the links they provided. The FDA link about also mentions capecetibine and leucovorin, but probably several more that I just don't know are cancer treatments or don't recognize by generic vs brand name.

gamaryanne | @gamaryanne | Jun 28, 2023

Perhaps it depends where you are located. I just met with my oncologist and he is not facing a shortage.

ncteacher | @ncteacher | Jun 27, 2023

In reply to @lvtexas "Did oncologist say why? How many Folfirinox cycles have you had? 12 is listed as max..." + (show)

Is that accurate about the oxaliplatin? The news stories I've read about a shortage of chemo drugs specifically mention cisplatin and carboplatin, but not oxaliplatin. It would make sense that it might be in short supply as well, but I have not been told that by my provider. As recently as last Tuesday 6/20, I got the full dose.

View More View Less

Please sign in or register to post a reply.