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Chemo treatment journey: He's so tired. Hard to be cheery

Posted by anto1nette @anto1nette, Apr 30, 2022

One treatment and he is SO tired every day. Sleeps most of the time. Very hard to be cheery when you have read all the dire consequences of pancreatic cancer.

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anto1nette | @anto1nette | May 30, 2022

He is always cold. Temp in the house is 80 but he still wears a hat and a towel he has on his legs. I offered an afghan, but no. They changed his chemo cocktail. Maybe that’s why he’s more mellow this time. I think they slipped in a little gin fizz. He is eating better. A good
point.
I do a lot of volunteering and had to drop out of a couple things. But that’s ok. I’m not indispensable.

REPLY
anto1nette | @anto1nette | May 31, 2022
In reply to @roch "My mother had pancreatic surgery and it is a stressful process. Though there was not much..." + (show)
@roch

My mother had pancreatic surgery and it is a stressful process.

Though there was not much I could do for her medically, I tried to keep her spirts up. If she craved a milkshake, I got her one. She liked to listen to music. We went for short drives to get out of house. If she fell sleep on sofa while watching a movie, I sat with her.

She was a spiritual person, and her pastor was kind enough to visit.

She actually did not not want many visitors, it would make her more tired.

Like any illness that takes away your energy, you prioritize the important things and not worry about other things.

My thought are with you.

Laurie

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For me the nights are the hardest. Sleep doesn’t come easy.

REPLY
leighs2011 | @leighs2011 | Jun 15, 2022

Hi I'm having the same response with Genera/Albraxine I've only had one chemo treatment and came home and had an uncontrollable urge to lie on the couch and sleep. I slept till the next morning with only pee and eating breaks. If this keeps up after every chemo treatment I don't know what to do. I hope it wears off. I hope your husband gets better. Good luck!

REPLY
baeph | @baeph | Jun 21, 2022
In reply to @vparr1 "I had my first chemo (pump and 4 hour infusion). I thought I would be dysfunctional..." + (show)
@vparr1

I had my first chemo (pump and 4 hour infusion). I thought I would be dysfunctional after. To my surprise I felt just like before the infusion, fine. Later in the day I got more tired than usual but not for laying down. Did go to bed by 8:30pm. I also felt a subtle metalic like feeling on my tongue but not yet sensitive to cold as is predicted/expected. I guess all the more invasion and disturbing side effects will kick in later and with subsequent infusions. I am just grateful I'm okay today. they did say it could take a couple of days before effects may start (like the runs, mouth sores etc). So far so good. At least it's a nice way to start. I'm sorry the other person was sooo tired right away. I have ampullary cancer (rare) and treatment like colon cancer. I wish I could communicate with others who have had the Whipple surgery (I had it in jan, 2022). Any one out there with it? Vera

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My husband had Whipple in March 2022. He has stage 1 Ampulary cancer. He has had sepsis twice resulting in five hospital stays between May 2 and 28th. We are waiting for chemo but can’t start bc of poor liver test results.
Right now I am completely confused. He is exhausted all the time and has no appetite at all. I hope your chemo continues to go well. Let’s stay in touch. Barbara

REPLY
1 reply
vparr1 | @vparr1 | Jun 21, 2022

Hi Barbara,
Your husband is still responding to the Whipple results. It took me a couple of months to adjust, though I had no additional post surgery problems you describe. The chemo I'm getting (infusion plus a 2 day pump I wear) is brutal. I always feel that the medical folks all over do the chemo formulas...too hard, too much in favor of giving too little. They worry about ineffective, though no one seems to be able to say what is appropriate for us personally. I will have my 4th (of 12 ) round tomorrow and I am frightening I will be so weak I can't eat or really ever get rest. I will be happy if I make it to 6 total rounds bc the third one almost did me in. I got a one week rest and feel much better again. Slight tweaking was done to chemo cocktail. Hope that helps me tolerate the next couple of infusions. Your husband will need to be well to take the chemo. I'm 75. Maybe he's a lot younger? Vera

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2022
In reply to @baeph "My husband had Whipple in March 2022. He has stage 1 Ampulary cancer. He has had..." + (show)
@baeph

My husband had Whipple in March 2022. He has stage 1 Ampulary cancer. He has had sepsis twice resulting in five hospital stays between May 2 and 28th. We are waiting for chemo but can’t start bc of poor liver test results.
Right now I am completely confused. He is exhausted all the time and has no appetite at all. I hope your chemo continues to go well. Let’s stay in touch. Barbara

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Hi Barbara, I just thought I'd check in. How is your husband doing? How are you doing?
Did you see the response you got from @vparr1?

REPLY
baeph | @baeph | Jul 4, 2022
In reply to @vparr1 "Hi Barbara, Your husband is still responding to the Whipple results. It took me a couple..." + (show)
@vparr1

Hi Barbara,
Your husband is still responding to the Whipple results. It took me a couple of months to adjust, though I had no additional post surgery problems you describe. The chemo I'm getting (infusion plus a 2 day pump I wear) is brutal. I always feel that the medical folks all over do the chemo formulas...too hard, too much in favor of giving too little. They worry about ineffective, though no one seems to be able to say what is appropriate for us personally. I will have my 4th (of 12 ) round tomorrow and I am frightening I will be so weak I can't eat or really ever get rest. I will be happy if I make it to 6 total rounds bc the third one almost did me in. I got a one week rest and feel much better again. Slight tweaking was done to chemo cocktail. Hope that helps me tolerate the next couple of infusions. Your husband will need to be well to take the chemo. I'm 75. Maybe he's a lot younger? Vera

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He is 72. This is a nightmare, as you know Vera. I’m so sorry you have to take this route. Do you think
the chemo is the wrong cocktail for you? How do we even access that information. I hope you have good support-we do from friends and family but we have yet to find support from the medical community that profits from his treatments (actually lack thereof)
I’m really angry and we will make some more informed decisions this week by speaking with different doctors.

REPLY
1 reply
vparr1 | @vparr1 | Jul 5, 2022
In reply to @baeph "He is 72. This is a nightmare, as you know Vera. I’m so sorry you have..." + (show)
@baeph

He is 72. This is a nightmare, as you know Vera. I’m so sorry you have to take this route. Do you think
the chemo is the wrong cocktail for you? How do we even access that information. I hope you have good support-we do from friends and family but we have yet to find support from the medical community that profits from his treatments (actually lack thereof)
I’m really angry and we will make some more informed decisions this week by speaking with different doctors.

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Hi Barbara,

Yes dealing with the medical community is like hitting the wall. Instead of offering support, you get statistics and other meaningless words thrown up at one. Being told everyone is different and not really being verbally able to justfiy / explain what and why things are being done in the treatment is the opposite of healing help I find. Getting information to make informed decisions is extemely hard. Haven't millions of us older folks gone through these cancer treatments and no one knows anything still? anti healing is not great at all. Good luck. Let me know if you get anywhere with your decisions.

REPLY
baboinwv | @baboinwv | Jul 8, 2022
In reply to @vparr1 "Hi Barbara, Your husband is still responding to the Whipple results. It took me a couple..." + (show)
@vparr1

Hi Barbara,
Your husband is still responding to the Whipple results. It took me a couple of months to adjust, though I had no additional post surgery problems you describe. The chemo I'm getting (infusion plus a 2 day pump I wear) is brutal. I always feel that the medical folks all over do the chemo formulas...too hard, too much in favor of giving too little. They worry about ineffective, though no one seems to be able to say what is appropriate for us personally. I will have my 4th (of 12 ) round tomorrow and I am frightening I will be so weak I can't eat or really ever get rest. I will be happy if I make it to 6 total rounds bc the third one almost did me in. I got a one week rest and feel much better again. Slight tweaking was done to chemo cocktail. Hope that helps me tolerate the next couple of infusions. Your husband will need to be well to take the chemo. I'm 75. Maybe he's a lot younger? Vera

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Barbara, First off God bless you and make you well! My son has Stage IV metastatic adenocarcinoma and he is taking the Folfirinox chemo recipe. He’s on his 3rd treatment and he’s just really wiped out! He said he has to dig really deep to make himself go back. He’s lost considerable weight and I pray he doesn’t lose so much they discontinue his treatments! I try to get him to eat but he is so nauseous he can’t eat even with the nausea medicine he takes. He has mouth sores and everything has a metallic taste. I’m wondering if you got a terminal diagnosis or if you were operable?

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