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Thu Jan 10, 2019, 02:11 PM

chemo report

I've had two treatments (of four of this kind; then I get four more of something else), so I'm halfway through what I hope is the worst. This chemo is not at all like the chemo I had six years ago--that was a breeze. This one has me totally knocked on my ass. The treatments are three weeks apart, and I'm not much better two weeks in than I am at a week in.

Today I went for blood work and told the nurse how bad I was feeling--exhausted to the point that I literally spend my time between bed and the recliner, with bathroom breaks and a shower when I can stand up long enough. My nausea has me retching until my abdominal muscles hurt, and the diarrhea, while not constant, is green (and I don't remember when I ate anything green). My mouth is full of thrush and painful sores along the side of my tongue and the inside of my cheeks, and I sleep at least 16 hours out of every 24. When I'm awake, all I can do is watch TV and bitch.

The nurse asked me if I had time for an intravenous fluid infusion, and I said yes, even though I'm drinking so much water my urine is colorless. She said sometimes getting it right into the blood vessels makes patients feel better. Three fucking hours.

And it's wonderful! I went from the chemo suite to the grocery store and bought peppers and sweet sausages (which I've been craving but hated to ask my poor husband to make), which I'm frying up right now with onions and a little garlic. I also bought ingredients for chili, which--assuming my power holds out--I'll make later today and we can eat for the next week.

Has anybody else had this reaction to IV fluids? They said I could come back for another infusion if I needed it, but not how many I can have--if there is a limit. I mean, it's just fluids, and I have a port, so no big deal, right?

I haven't felt this good since before surgery. I wonder how long it will last.

Oh, and they prescrbed for the nausea and thrush, too, but those don't seem worth the trouble now.

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Reply chemo report (Original post)
cyclonefence Jan 2019 OP
vlyons Jan 2019 #1
cyclonefence Jan 2019 #5
Ohiogal Jan 2019 #2
cyclonefence Jan 2019 #4
notadmblnd Jan 2019 #3
PennyK Jan 2019 #6
cyclonefence Jan 2019 #7
JHan Jan 2019 #8
cyclonefence Jan 2019 #9
JHan Jan 2019 #10
cyclonefence Jan 2019 #11
Glimmer of Hope Jan 2019 #12
cyclonefence Jan 2019 #13
alfredo Feb 2019 #14
cyclonefence Feb 2019 #15
alfredo Feb 2019 #16
cyclonefence Feb 2019 #17
alfredo Feb 2019 #18

Response to cyclonefence (Original post)

Thu Jan 10, 2019, 02:16 PM

1. ASk your Dr about taking some CBD

It is a marijuana derivative that is not addictive. It has been given for years to cancer patients to help with pain and keeping food down. It comes in the form of candy, liquid, and other edibles (cookies). You can buy it online if you live in a restrictive state.

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Response to vlyons (Reply #1)

Thu Jan 10, 2019, 04:54 PM

5. I'm going to see the oncologist next week

and plan to ask him about medical marijuana. My retired-doctor friends all tell me that's what I need, and the capper was the ultra-conservative retired cardiologist whose son had a serious drug problem--even *he* told me that mm was the best treatment for what I'm going through.

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Response to cyclonefence (Original post)

Thu Jan 10, 2019, 02:20 PM

2. Hi cyclonefence,

I am so glad to hear they were able to do something to help you feel so much better! I never heard of IV fluid infusion for these chemo symptoms. If I had, I would have asked for them 10 years ago, because when I was mid way through my chemo, I had many of the same symptoms as you! Miserable nausea ....complete exhaustion .... mouth sores .... I also had excruciating acid reflux and was constipated beyond anything I've ever experienced. I was also very depressed.

Please don't overdo it .... I know it must feel great to have some energy, ambition, and appetite ..... I hope that infusion and it's effects last you for a good long while.

I remember that everything I tried to eat had a metallic taste. So I didn't eat anything. The only food that tasted good to me was cole slaw.

Three hours for an IV infusion, huh. That's a long time .... but I'm so happy it helped you feel so much better!

Hang in there ..... I'll be sending you all the good karma I can muster!

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Response to Ohiogal (Reply #2)

Thu Jan 10, 2019, 04:52 PM

4. Thanks, Ohiogal

It wore off about halfway through browning the meat for the chili. I got a stool and tried to finish it sitting down, but my arm was too heavy. Oh, well. It got me out of the house for the first time in a long time, and I bought the kind of cheese I like that my husband never can find!

Actually, I still do feel a little better. I've been staring at the Christmas tree for the past 2 weeks wishing the ornaments would take themselves down and put themselves away--why is it that so many folks enjoy decorating a tree but disappear when it's time to take it down? I wouldn't have allowed them to put so much stuff on it had I realized--anyway, I've had the strength to take a few ornaments off at a time, wrap them up and put them in the box, so I might get it done by tomorrow.

All in all, it was worth it. I know now that I can have a treatment that will let me be human for a few hours. I'm due to meet my daughter (who is disabled) and her caregiver at her doctor's office Monday, so I'll ask for an infusion Monday morning.

Things taste pretty much the same--except coffee, which I can't think of without gagging--but I can't eat more than a few bites of anything. I've lost about 15 lbs, which isn't the end of the world, but it's a hell of a way to diet.

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Response to cyclonefence (Original post)

Thu Jan 10, 2019, 03:41 PM

3. I finished chemo in Sept. Had surgery in Oct and finished up with radiation just after thanksgiving

I had 6 rounds of chemo every three weeks. Four chemo drugs, Taxotere, Perjetta, Carboplaten and Herception consecutively, with a 15 minute dose of intravenous Benedryl before starting "infusions" and a five minute ..cant remember the word for it.. rinse in between drugs. I always had chemo on a Thursday and usually felt pretty good til about 9pm on the Fridays after. Then all hell would break lose. Nausea, vomiting, explosive diarrhea. And boy do I mean explosive. but that was just for starters. The headaches I got to wake up to every morning, my nose literally running and bleeding like a faucet had been turned on in my head. There were times I didn't know which end to put on the toilet first. Once I opted for puking in the bathtub. I got so weak about halfway through I had to use a wheelchair. One of the drugs I was taking causes temporary heart damage so I had to go for heart scans (called MUGA scans) to ensure my heart was strong enough to continue chemo. I was given a 3 week break in order to regain my strength and then finished my course.

Chemo is something I would not wish on my worst enemy, and if I hadn't been assured that chemo would be effective I wouldn't have undergone it. But it did shrink my tumors by more than half and my surgeon removed them. She said "all the margins came back negative," which means they think they got it all.

My next journey was Radiation. Boy was that a treat, and yes I'm being facetious. Five days a week for six weeks. Skin burned so bad it was peeling off. Aloe is a wonderful soother but Silvadene cream is a great healer. If you have to do radiation make them give it to you. They'll tell you not to use Aloe before radiation, but I did and I found it helped immensely the first 4 weeks. After that I think the
Techs cranked up the dose because nothing prevented my skin from burning. I can' even imagine what my body must look like on the inside.

I hope your treatment will go smoothly. I think anything that could happen, did happen during my treatment. From the improper placement of my port to the scaring on my skin from receiving chemo directly via my arm.


But I'm through the worst of the treatment. I still have to go for one chemo drug ever three weeks. But instead of it taking 3/4 of the day, it now only takes a couple of hours. And I found out that the reason I got cancer and it grew because my body produces too much Estrogen. Can you believe it? I'm too girlie. . So it will be a year of treatment in April and I won't have to spend so much time at Drs. but he did tell me.. that's not all. Nope. I will have to take a pill for a minimun of the next 5 years that will throw me back into menopause because it will suppress my estrogen production and prevent my cancer from growing back.

If you feel you need someone to commiserate with or to vent.. I'm here. I don't post often, but I do lurk and have an idea of what you are going through.

Be good to yourself and take care


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Response to cyclonefence (Original post)

Fri Jan 11, 2019, 07:53 PM

6. What was the infusion?

They gave me magnesium, and it didn't do what your infusion did! In fact, it totally upset my digestive system.
And I did have anti-nausea medication, which was very expensive (but I got some free samples). I never had a moment of nausea, though.
I hope everything tastes good! I lived on chicken soup and ice cream.

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Response to PennyK (Reply #6)

Fri Jan 11, 2019, 10:40 PM

7. It was just saline!

Or whatever "IV fluids" means these days. Used to be Ringers solution, which was salt water. The weird thing is that after the initial surge, during which I did tire myself out, I have regained some of that energy and continue to feel much better--more "alive"--than I have for months, maybe even years. I was suffering from a debilitating fatigue even before the cancer diagnosis and had had tests done on every system, with no surprises. I finally decided the fatigue was a combination of getting old and the fact that I'm a polio survivor (yes, that old!) and gave up. I needed to rest throughout the day, after every exertion, and I took morning and afternoon naps. Since the infusion I've not only not napped but have actually stayed awake during a whole "Midsomer Murders" episode.

Everything tastes fine, except for coffee, the very thought of which makes me gag. I've found that more helpful than medication for nausea is eating small amounts throughout the day. When my stomach feels empty, I can feel the nausea coming on, so I grab a couple of grapes or a forkful of chicken salad or a peanut butter sandwich. Friends who've brought over wonderful, enormous casseroles and potpies don't know about my trouble with eating, and I'm sure not going to tell them.

About the IV, though: when I'm done with my cancer treatment I'm going to ask if I can come back periodically for an infusion of fluids to see if it makes a difference to my level of fatigue. I'm not dehydrated--my urine is clear as spring water because I drink so much water--so there's something about delivering it directly into my veins that's doing the trick.

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Response to cyclonefence (Original post)

Sun Jan 13, 2019, 04:06 AM

8. IV fluids have helped me through rough chemo cycles.

much more effective at rehydration than drinking water.

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Response to JHan (Reply #8)

Sun Jan 13, 2019, 07:55 AM

9. Thanks

I'm really glad to know someone else has this experience. I'm feeling so much better but was worried it was a placebo effect. I may be requesting these infusions long after chemo is done--it was that wonderful.

Hope you're doing well. Getting some rest, are we?

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Response to cyclonefence (Reply #9)

Sun Jan 13, 2019, 10:44 AM

10. yup but also started a new chemo cycle so ...........ugh. I'm hanging in there

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Response to JHan (Reply #10)

Sun Jan 13, 2019, 08:30 PM

11. A friend who's a veteran of a lot of chemo

came to see me the other day, bearing gifts of dried fruits and nuts. I can't eat very much at a time, and these nutritious snacks are just what I needed.

But apropos of you and me (I'm halfway through the "bad" chemo), she said after I complained that my day consisted of sitting in the recliner drinking lots of water and watching tv, that that's exactly what I should be doing. I am a brisk kind of person who likes to get things done, and I sense you are, too, and a lot of my discomfort (emotional discomfort, that is) comes from guilt at "wasting" my time like this. I find I can't read, and I do nod off every 15 minutes or so for anything from five minutes to an hour, so I'm not good company, either. I whined because while I've lost a little weight, the fat I have has all gravitated to my belly because I just sit all day long.

She gave me a little lecture whose gist I'll pass on to you: No one who hasn't undergone what you're undergoing understands how fatiguing chemo is. You don't owe anyone, including yourself, apologies or explanations for your torpidity. If you fight it and try to do things, you will end up feeling worse than you do now. You are not sitting on your ass all day because you're lazy or because you want to. You're sitting on your ass all day because you *have* to. Poison is being pumped into your body on a regular basis, and it will of course make you feel like shit . How can you fight poison? You have to rest your body to help it endure this dreadful assault.

Well, it made me feel a little better, especially since she delivered her tirade in front of my husband.

Are you having nausea? Diarrhea? I've found that if I eat a little something at the first feeling of hunger, something like a piece of cheese or a handful of nuts, I avoid nausea--and mine was awful; retching until my abs were sore. If I eat too much, I'll get nauseated. I think it's like a diabetic maintaining a steady insulin level--not too much or too little. The diarrhea I live with. It's not terrible or constant, and the medications constipate me, which I think is worse.


Please keep me up to date.

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Response to cyclonefence (Original post)

Mon Jan 21, 2019, 10:08 PM

12. That is so interesting! I am on my third go around with chemo and have tolerated it pretty

well but I think I am going to ask for a fluid infusion especially towards the end. My nurse last week told me to ask for fluids if I thought I needed them and I just assumed she meant for severe dehydration. I want this!

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Response to Glimmer of Hope (Reply #12)

Tue Jan 22, 2019, 01:17 PM

13. I hope it helps you

I'm a different person--still a little tired, but nothing like the fatigue I had before. My oncologist has ordered IV fluids for me once a week.

Good luck!

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Response to cyclonefence (Original post)

Wed Feb 20, 2019, 04:01 PM

14. I couln't Handle more than two chemo runs. Nausea medicine helps

Take your anti thrush and anti medicine. It will make you more comfortable. Vomiting dehydrates you and robs you of nutrients.

Hope you can rise above the disease. Keep fighting

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Response to alfredo (Reply #14)

Wed Feb 20, 2019, 07:58 PM

15. Thank you

I finished the chemo a week ago and am still tired and unable to eat much. I had chemo years ago the first time I had breast cancer, and honestly it was a walk in the park. I didn't understand why people dreaded it so, or why some people were not able to complete their course. I get it now. There's chemo and there's chemo.

I had expected to have another four treatments 3 weeks apart after this, but the oncologist has decided to hold off. The nurse told me that the next course is even worse, so I hope I never need more.

I hope you are continuing your fight, too, and prevailing.

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Response to cyclonefence (Reply #15)

Thu Feb 21, 2019, 12:09 AM

16. You should try radiation. It's fun for two weeks then it humbles you.

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Response to alfredo (Reply #16)

Thu Feb 21, 2019, 04:35 PM

17. Been there, done that

Radiation the first time around was a thousand times worse than chemo lite. Nobody warns you about radiation. I was good for two days, then couldn't get out of bed for two more.

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Response to cyclonefence (Reply #17)

Fri Feb 22, 2019, 12:12 AM

18. They gave me the Fentyl patch.the patch lasted 3 days.

First day it was Like walking through jello
The second day like any other day
The third day I was looking to score some more.
They asked if I wanted a refill and my mind flashed back to the Junkies in the Cass corridor. I said no.

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