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Scared and Nervous about Chemo


Dulcinea

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I had a lobectomy on 10/6, removed the lower left lobe, as well as some lymph nodes and a small section of the chest wall.

pathology came back good, margins on chest wall, while narrow, were clear, as well as nodes 5, 7, 9 and 10 - all clear.

my oncologist has recommended a 4-cycle regimen of cisplatin/gemzar - 21-day cycles, so both meds on day 1, and then gemzar on day 8.

additionally, i apparently am a good candidate for a phase III clinical trial for avastin - that would be 12 cycles, plus all the 'stuff' they do.

and the closer it gets, the more nervous and scared i get - i don't know what to expect, but get a lot of "you'll be fine, it'll be fine" from my parents as well as the oncologist.

anyone been on this regimen? can you share your experience? what you experienced, how the side effects were, how they were managed, were you able to lead a life, aside from chemo?

help?

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My husband did not have the same chemo combination you're starting with but he did have avastin down the road. Drugs are different for everyone - what bothers some people is a breeze for others. In general though it's important to make sure you drink a lot of water before, during, and after chemo. It will help immensly with the muscle aches and that flu like feeling you get from some drugs. The chemo will take the good cells too, so expect to have a tired day or two following chemo (for my husband it happened the 3rd day following). You can do this.

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Just think of this chemo as an insurance policy. Listen to your doctor. It is a very short period of time that you will be on chemo, and a very long period of time after to enjoy your life.

Listen to Rochelle and drink lots and lots of fluids. And keep eating, Ensure, ice cream. How often do people tell you to eat as much ice cream as you like.

Keep us posted.

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I completely agree with Ry. Everyone is different, and someone that has had your chemo regime may react completely different from it than you did. My chemo was Carboplatin and Taxol. I felt good on day one and two. Day three to five were a bit raw. Tired, sore muscles, and nausea. The medications for the nausea helped a lot, but because of the platinum in the chemo, the food tasted like metal.

But it was tolerable, and ok. I did make myself eat, and even ice cream tasted like metal. LOL. But like Ginny said, it's a very short amount of time to be on it to allow you to live a very long amount of time.

"You'll be fine" must seem weak to you. But long term you will be. You seem to be a strong woman, strong in character and will. You will be fine.

Here's some things I did to help myself.

#1 - hair loss. I didn't mourn it. As soon as it started coming out, I shaved my own head (quite carefully LOL). I found a lot of really cute hats at http://www.tlcdirect.org/. They are not expensive and are very comfy. I did buy a wig, but it was a waste of money. It itched and was hot, and I hardly ever wore it.

#2. - constipation. Your doctor should recommend or prescribe a stool softener. Take it regularly no matter what. It works and will help you feel better.

#3. - nausea - Again your doctor will prescribe medication for it. Take it no matter what. If it does not work, let your doctor know because there are lots of different medications for that.

#4 - pain. You may or may not have pain. Most people don't, but I did. It was muscle pain. My body tolerated Vicodin well, so that helped a lot. Don't be shy about asking for pain meds if you need them.

It's likely you'll feel tired. Try to get as much sleep as possible. Naps are a good thing always :-)

MI Judy

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I had that chemo doublet after surgery. No hair loss, so don't get ahead of yourself on shaving! Mine did thin the month after treatment ended, but no one could tell but me and the shower. I did hate the stink from chemo, and could handle the scent of high quality soap and shampoo to mask it. Some can't.

Take the anti-nausea drugs and the anti-constipation drugs. Food tasted fine to me, but I mainly wanted chinese and indian food, and stuff like peanut butter toast, almonds, yogurt, and ice cream. Ginger is good. Try to walk daily (though I think you will be forced to be active with a family?) You will receive dexamethasone (a steroid) to help with the nausea. It may make you a bit hyper for a few days around infusion. Try to rest on those days anyway. You will likely experience a crash when their course is done, like 3 days after infusion.

Okay, that was my experience. I've known others to have almost no reaction to chemo - just would go right back to work. You'll have a better idea after your first day. The day with cisplatin will be long as they hydrate you at the same time (and you'll be using the sandbox all day long!) The gemzar only day was far easier for me - I would go to lunch afterwards. I worked part time for about half the time I was on treatment, and then decided I wasn't up to it. But we continued to walk and go out, visit with friends, go see movies. A good time to take care of yourself as best you can.

Don't hesitate to inform your oncologist or the nurse of anything you are experiencing. They can help with drugs, or even with a dose adjustment. This can include ringing in your ears, dizziness, neuropathy (numbness or tingling in your hands or feet) and other bodily delights.

A couple of weeks after chemo ended, we got on a plane and went to San Francisco and had a nice escape. We walked a lot, went to the museum, ate good food. Try to have something to look forward.

I hope that helps?

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  • 1 month later...

i realized today that i haven't been on here to make any updates.

as of yesterday, i have completed 2 of the 4 rounds of chemo.

i'm in the clinical trial, and randomized into the arm that gets the avastin.

and through an organization called "cleaning for a reason", i qualified for, and was matched up for 4 housecleanings (apartment, actually) - once a month for 4 months. they were here yesterday, and my apartment is lovely. i rented a rug doctor, and my son is going to help clean the carpets while it's nice and clean here.

side effects. the nausea sucks. seriously. it's worse after round 2 then it was after round 1.

chemo brain. i think i have it. i could have sworn i called my dad last night, got his answering machine, and left a rambling phone message what was just over 2 minutes (i looked at the phone when i hung up)

i talked to them tonight. apparently i did not leave a message. i talked to them.

i'm so confused, i think it must have been that my brains checked out for a while. i sure hope i didn't do any knitting!

so that's where i am. sort of dreading round 3, wanting round 4 to be over, dreading any more scans, and wanting the reassurance that there isn't any cancer growing inside me.

and i haven't had a cigarette for 13 weeks and 5 days.

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Thanks for the update! Think you are doing well. Don't worry about the chemo brain. I know a lot of folks who never had chemo that don't remember much more than I don't! LOL

I have finally accepted that my memory is no longer better than an inch worm and I tell people that. I used to get so upset about that, but no more. IT is what it is, and I do the best that I can with what I have. It's okay.

Judy in MI

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Thanks for the update and congratulations on the no-smoking mark! The next two chemos will be gone before you know it and then you can begin to live life normally again. It's so much better to grin and bear the follow-up chemo. Since you are in a randomized trial, they will watch you closely so relax. Hope your chemo schedule lets you have an enjoyable Christmas.

Judy in KW

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