Started chemo for pancreatic cancer and already want to quit

Report the symptoms to the doctors and they can make adjustments to reduce side affects. It’s worth it! I made it through 12 rounds of chemo and feel much better now.

Hello @tnt69 and welcome to the Pancreatic Cancer support group on Mayo Connect. I so appreciate your concern for your sister and the support you are offering her during this difficult time. Beginning chemotherapy can be difficult for anyone.

The members of the Pancreatic Cancer support group here might be able to share their experience with you if you could provide a bit more information about her cancer as well as the type of chemotherapy she is taking, I can then find other members who might be able to share their experiences.

What is the name of her chemotherapy drug and how often does she take it? Can you specify what type of side effects she is having?

As @marciak9 mentioned, she needs to contact her oncologist regarding the problems she is having. There are often other medications that can help minimize the side effects of chemotherapy.

I look forward to hearing from you again. Will you post again?

I'm sorry to hear that your sister is having a difficult time with the chemo. I am a 1 year pancan survior as of Oct. 25. When my oncologist told me this I first of all was, this isn't something to celebrate, but the more I thought about it it IS something to celebrate because I'm still alive, feeling okay & still fighting. I remember before I had my first chemo, I was overwhelmed with all the medical jargon and tests that were happening so fast. If your sister is anything like me, she is probably still trying to process being given a cancer diagnois. I was so anxious about the possible side effects etc. fortunately I haven't had too many bad side effects. I agree, she needs to let her doctor know what side effects she is having, the amount of chemo can be adjusted as well as other things. My first round of chemo, the major side effect was sensitivity to cold on my hands,mouth & throat. I learned to wear oven mitts or gloves taking things out of the fridge or freezer, even wearing gloves in grocery store. I also had numbness in the hands & feet. I'm on my 3rd type of chemo, no sensitivity to cold, but still have numbness in hands & feet. I also feel very tired most days the first week of chemo, be sure to rest when your body tells you. I feel fortunate that I haven't had many bouts of nausea or diarrhea, although it has come close. Your sister may also experience "chemo brain", like brain fog, can't remember things. Some days are better than others.
My mucinous pancreatic cancer doesn't have a cure but hopefully can be managed. So I suppose I will be getting some form of chemo for the rest of my life, unless by some miracle they find a cure. The thought of this doesn't excite me at all, but my husband, children & the rest of my family want me to stay alive. I figure I can live my life and do the things I want when I'm feeling good and there are good days!
Some previous pancan patients had commented they had looked into pallative care & even hospice but that was usually when they had exhausted all types of treatments. Please don't give up, maybe you don't have the right chemo or it needs to be tweaked. My doctor told me the first chemo I was on was really hard on the bone marrow & it took a while for my body to recoup. It will be difficult for your sister because alot of the chemos affect every part of the body. I found out if I remembered to keep drinking, it helped flush out the chemo faster. At least that's what I thought. Tell your sister to hang in there. I hope she has at least a week to recoup before her next chemo. It helps having family or friends as a support system too. I was given a nurse navigator the first visit to my oncologist. The nurse navigator is there to call if you are having difficulties or need someone to talk to, maybe your sister has a nurse navigator too. Please take care of yourself as well as your sister. This is a new experience for your sister & you, as with any new experience it takes time.

Definitely report the symptoms to the oncologist. Medications can be added or removed from the regimen, and dosage levels can be adjusted to minimize side effects. Also, I saw that @margefromwi mentioned that some patients see palliative care as a last resort, but I wanted to mention that I was referred to palliative care immediately after diagnosis and staging. My palliative doc is the one who prescribed an appetite booster (I tried it, but it didn't work for me) and a prescription-strength antacid, which I did need. He will be the one to deal with pain control if/when I have need of it. I was told that by being an existing patient, I would be able to access care more quickly when I needed it. I like the idea of a nurse navigator too, if one is available in your clinic.

Sounds familiar. But, I would encourage her not to quit.

Every other week I received chemotherapy. Eventually I did 10 rounds of Gem/Abrax.
Weakness, body aches, diarrhea, constipation, nausea, inability to stand, falls, gout flare ups and blurred vision were the main culprits. Over seven months I had two month long hospitalizations.

What surprised me was that my illness wasn’t predictable. I’d have days when I felt okay and other days that were a trip to hell. There were times when I considered quitting, but chose otherwise.

So why do I encourage her not to quit.
Why didn’t I quit?
Hope.
Chemotherapy gives us a fighting chance.

I’m happy that I decided to continue chemotherapy.
Next for me is up in the air. Perhaps radiation, or radiation and chemo together.

tnt,

You have been given some great advice, above.

You did not provide information relating to your sister's condition that might be helpful ... specifics of the pancreatic cancer, stage of the cancer, where she is being treated, specifics re type of chemotherapy, her age, physical condition, etc - all these bear on any decision she might make.

If she is not being assessed and treated at a center of excellence, she should be. Local medical facilities are usually not capable of advanced care. If necessary, while difficult, please consider relocating her so she can be treated at one of these facilities.

There are circumstances where age, condition, specifics of the cancer, and stage might indicate non-treatment - please work with a center of excellence in this determination.

Oh how my heart aches for your sister and family. My husband had the worst 1st round of Chemo (Folfirinox) in Feb. 2023. His team immediately did a 10-20% reduction of the 3 drug regimen. This did make a big difference for the next time. It is not easy and the side effects can vary from day to day, round to round. He also wanted to quit and I felt the same way. But, wanting to live to see his grandsons grow up was a big motivation for him. Definitely report all of this to her Doctor. They want her to succeed too. This site and everyone’s help have kept us going. God bless.

As many have already mentioned, bringing it to the attention of members of the care team will address symptoms with appropriate and various medications. Battling pancreatic cancer is the most challenging thing in my lifetime. I never expected it would be easy. The first thing I did was in having realistic expectations. Treatment would likely be grueling and long.

I prepared myself by asking my care team what were the more common symptoms to expect, what medications were available, when and how to take them-particularly in being proactive to prevent symptoms from manifesting. This helped me endure 24 months of the strongest chemotherapy available that I received every 15 days at full-dose (based on my body mass) without pause. My goal was survival and that’s what I focused on. I told myself I had to be strong and was not going to let the cancer define me.

Protocols for chemotherapy regimens can be adjusted for a patient to improve tolerability. If there is still issues, a technique called metronomic dosing can be used where a much lower dose is used but it is administered more frequently. Patients generally find this methods helps in tolerating the treatment allowing for completion. There are also milder regimens that can provide for longer survival and better quality of life. These are options to be explored before making a hasty decision that can have consequences one does not hope for.

Some info on metronomic dosing:

Metronomic Dosing
https://pancreatic.org/chemotherapy-for-pancreatic-cancer-patients-less-is-more/
https://letswinpc.org/promising-science/2017/05/12/synergy-metronomic-chemotherapy/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806805/
https://pubmed.ncbi.nlm.nih.gov/35740571/
http://i2b.us/lowering-the-chemo-dose-for-pancreatic-cancer-patients/?fbclid=IwAR14ag5NPMUaBrdVotX4EKSyLPrLk8D30Jez8aP0K1PnAiN8zdYbeCxDBd0

How old is your sister, and what stage, and which type of pancreatic cancer, and which chemo(fulfirnox?)
I am 63. I'm stage 2b w the most common type of pan cancer , and have done 7 fulfirnox treatments.
I too wanted to quit after my first treatment. I had severe jaw pain from the oxaliplaten. After my 2nd chemo, they reduced my oxaliplaten to 50%, and started giving me benadryl, calcium, and magnesium before the oxaliplaten. They reduced another one of my chemo 10%
I've had many problems w my gallbladder since my start of chemo. My gallbladder duct became blocked- they had to go in and make a new pathway from the gallbladder to the small intestine, and included a stent in this pathway.
Seeing an integrative oncologist, acupuncture, talking with a chaplain in palliative care, reading books by Lynn eib,
support from family, support from friends, support from my church, a caring bridge website where friends and family can get updates, a virtual support group, seeing a counselor from palliative care on my nonchemo weeks, have all helped me. I do feel better now, and am more hopeful now, than I was at the beginning.
One helpful thing that was told me at the very beginning - "You can decide at any time to go into hospice care. It is your choice. At any time during your chemo treatment, you can make a decision to go to hospice. But dont make the decision during a chemo week." There were many chemo weeks when I thought about going to hospice, because it was so difficult. Now that my gallbladder issue has been taken care of, things seem to be going better. My counselor told me he wants to help me see that I do have the strength to go through this.
At the beginning of my chemo I had lots of problems w nausea, but am now managing most
of my nausea with medical cannabis.
My heart goes out to you. I am sorry you have to go through this. Keep in close communication w your chemo oncologist about your chemo side effects, so they can do whatever they need to, in order to help you get through this.

hello sorry about my delay in responding, my sister is 58,has stage 4 metatastic, her first treatment was awful, her chemo is gemcitabine 1600mg, abraxane ivpbv200mg 40 ml,and she is doing a trial drug called elarglusib (9-ing-41). I don't know if all of these drugs that she took during her 1st treatment helped or not,but they completely knocked her out for several days and when she did get up she wanted to lay right back down. it's really hard seeing her like this, and she is suppose to go through this through June of next year every single week,and only feeling better and still not 100 percent 2 out of the 7 days a week, before she repeats the vicious circle again, it's gonna be hard for me to push her to go through all this, when I'm not sure it's worth it myself it seems to me that she is trading alot of good days for extra time on earth to suffer more...p.s. she is also losing to much weight and has such a restricted diet because she is also diabetic now. thank you for chatting with me it helps to talk to someone who has or who is going through the same thing she is. glad this group is here and so hopeful, god bless you all