Severe side effects from chemo and choosing to continue or not

I would ask the oncologist three very specific questions: What additional benefit do you realistically expect from treatments 8–12? What are the risks given how poorly he tolerated the first seven? And could the treatment be reduced, modified, or stopped rather than choosing simply between full treatment and nothing?

@mcharlesfrancis
Thanks so very much for taking the time to thoughtfully respond! Our oncologist did answer these questions. His opinion was that there would be little to no benefit to continue treatment. It could possibly be detrimental rather than helpful. He also said that my husband probably got most of the benefit in the first 7.And less reduced strength or longer time in-between was not beneficial in effect. My husband needed to hear it from somewhere else as well. I know it was prompted by fear to do 1 more. I showed him your respond and after more thought, he said that he decided to stop chemo, like he needed permission to make that decision. I thank God for you caring for your fellow partners in pancreatic cancer. 💞

I don't have advice but i wanted to wish your husband, and you, all the best. I hope his nausea goes away soon and he can enjoy himself.

@djfone My husband had a Distal Pancreatomy . It took him 6 Months to recover from the surgery due to many complications afterwards. He never recovered the weight he lost nor his strength. We talked many times about whether it was the right decision to have the Surgery but we both agreed that the surgery gave him an extra two years and after those first 6 months, we had a wonderful year spending lots of time with Family and Friends and creating lasting memories for our Grandchildren.
Our Oncologist recommended that we not do Chemo because he was so weak that she was afraid the Chemo would kill him. That was definitely the right decision for us. We wanted Quality of Life over Quantity . The decision is a personal decision for everyone and dependent on so many things .
The only advice that I can offer is to Love much and get as much enjoyment out of every day you have. We all need to do this because none of us is promised tomorrow.

@djfone, re you and your husband doing? (Loaded question, I know.) 💜

I had a reaction on the third chemo to the OX… Med that gave me the cold effects also.
They did the other 2 drugs first on the first 2 chemo’s, But on this chemo they did it first. I’m not sure if that made the difference.
I could breathe through my nose but couldn’t Swallow!!!!
They gave me meds to stop the reaction. I reacted the next day and had to take Benadryl and go to emergency.
They moved the 4th chemo to 4 weeks later. 7/23/24
And at that they changed it to a long chemo, all day. That did help and made the after effects better!!!
I did have to start taking
2 steroid pills before chemo after that. One 12 hrs before and the 2nd 6 hrs.
I did chemo first then the wipple surgery. My pancreatic cancer was at the top of the pancreas. And the smallest the doctor had ever seen!

I had raised hives off & on since Jan 2020!!! They couldn’t figure it out till I turned yellow and then found my Bile Duct blocked. And found the cancer! I’ve heard of other people that have had blocked bile ducts along with their cancer! They need a test for this!!!!!!! The hives went away but Came Back in Dec.
They went in and unblocked the bile duct again and found that the cancer was dead!!!
I thought I might not have to do the wipple surgery, but No!
I had it the next month.
I lost 50 lb with that!
Neuropathy of the feet, but only the numbness, no pain!
Still trying to figure out the diet and foods, BM’s etc.

You have probably made a decision by now, but for others out there in the same situation... My husband made it through 6 of 8 chemo treatments of FOLFIRINOX from April to July. He lost a total of 100 pounds. We first took a break but he wasn't bouncing back and chose not to continue chemo. Our oncologist felt he would not make it to surgery if he had any more treatments, as his body was already so weak. Thankfully, the surgery went well, but the recovery has not. My husband has not gotten his taste back after the chemo and had to be but on IV nutrition. The surgery was 9/4 and he is still barely eating. Also, surgery showed the chemo did not shrink the tumor so continuing would have been pointless. Given all of this, we have also decided not to continue with chemo after the surgery.

Hi there! My husband has gone through similar circumstances. He had Whipple first then completed 7 out of the 12 projected Folfirinox treatments. Lost 70lbs, barely able to tolerate food, taste lost or so totally changed made him ill. Could not continue & that was ok. It was literally killing him. Last treatment was end of July to now. Honestly whatever he could possibly tolerate, that was what he ate, even if it was only a few bites. Carnation instant breakfast mi with whole milk was what he could tolerate & lived on at first. It took till about 2 weeks ago till some taste came back on some things. Beginning to get the knack of amount of pancreatic enzymes with meals & snacks. He's gained about 8lbs & starting to build stamina. It's a slow go. Taste and tolerance changes by the day. It's frustrating at times, but we try to celebrate every small victory. I think comparing other people's progress may not be helpful. If the "rules" are not working, change to what works for your husband with guidance with the oncology team. I will definitely pray for you and your husband to find wisdom & encouragement even with small victories.

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My husband had the Whipple operation, classified as stage 3b, followed by chemo and radiation. He’s got the genetic makeup that shows he can’t metabolize the usual chemo drug. He’s had 9 months clear and then it metastasized showing up in neck area lymph nodes. He’s not tolerating the modified chemo cocktail, had an 8 week break , looked at possible trials and he’s back for more chemo.

Do you has the genetic info on the cancer? There seems to be some trials or use of anti-RAS drugs being used in the USA. RAS is common in pancreatic cancer. My husband’s is RAS negative but HER2 positive. Has your oncologist suggested any RAS targeting drugs or trials?

Wishing you both all the best.