Chemo 101 for newcomers

[MaryIN]

Hi all. I'm starting this thread as a centralized place to post tips/advice/experiences for newcomers to the board who are looking for info on chemotherapy. Please add your thoughts here, and then when newcomers come on board, we can link them to this for our encyclopedia of chemotherapy advice. :-)

My thoughts:

Going in for your first chemo is TERRIFYING. You have no idea what to expect, and none of those expectations are pleasant or good. The really, really, really great news is that the act of getting chemo is generally completely uneventful. Here's how it worked for me:

Pre-chemo: Drink lots of water the day before/of. You want to stay well hydrated. Take a water bottle with you to chemo, too. Constipation is a big issue. Many people take a stool softener or laxative prior to treatment. That was part of my protocol, as was continuing those for four or five days after treatment.

Ports -- I had a port (portacath) installed the day before my first treatment. This is a handy little device, sort of like a miniature inkwell, that goes in your chest (or arm if you're outside the US). Where the port is installed, you have a little bump that sticks out, plus a little cord that goes up your neck into your jugular vein. The port doesn't hurt usually, but it does take some getting used to to having a bump and a cord. The upside of the port is they can give you chemo drugs faster than if they're putting them into your vein. If you're going to be having more than 3 cycles of chemo (six treatments -- each cycle is two treatments), your doctor will probably talk to you about getting a port. It's an outpatient surgical procedure that you rebound from quickly with few after effects other than some soreness. I have a scar about 1 inch long just above where they installed it, and I think when they remove it, they try to work the same area so you don't end up with multiple scars.

Okay, so that's the port story.

Now, onto my first chemo. I took a friend along, as well as some hard candy and a little container of scented handsoap. An HD survivor suggested that because she developed a serious aversion to the smell of hospital soap. She suggested taking different scented soap each time so you'd never associate the smell of the soap with the chemo. That wasn't necessary for me, but I did donate some really nice soap to the infusion room bathroom!

Anyway, the process started in a private room where my friend and I watched a horribly outdated video about the wonders of chemo therapy. Then I was given two Tylenol. After that, it was time to get down to business.

Accessing the port -- this is the euphamism they use to describe poking a needle into your chest. Much has been written on this board regarding this process. There are creams you can use to numb the area, and a spray you can use for the same effect. I was never offered any of those things, and while it was less than pleasant, it was never truly painful or unbearable. The nurse would instruct me to take a deep breath, she'd pop the needle in, I'd feel woozy for a second or two, then I'd be fine. The needle is attached to an IV tube, and that's all hooked up to the infusion pump -- the machine that your IV drugs hang on.

Flushing -- the process began with a heparin flush (a drug that keeps your blood from clotting), followed by a saline flush. You don't "feel" these necessarily, but sometimes you TASTE them. This is where the hard candy comes in. Candy that is strong and sour is effective -- Altoids sours, lemon drops, that sort of thing.

Drips and pushes -- Your drugs will be a combination of drips (bags of drugs that hang on the pole and drip through your IV line) and pushes (syringes of drugs that nurses inject into your IV line). What order my drips and pushes came in depended on my nurse that day. They always started with anti-nausea medicine - decadron and aloxi.

Three of my four drugs were pushes. Adriamycin is the red drug. It will instantly turn your urine red, so dont' freak out the first time you go to the bathroom! I was told to chew ice during the adria push to avoid mouth sores. The coldness in your mouth prevents the drug from being absorbed there. Because of that, if your HD is up that direction in your body, they may not let you chew ice. Mine wasn't, so I chewed it every time and never got a mouth sore.

Bleomycin is another push. That one tastes really bad, so again, have that candy handy! At your first chemo, they will test you for an allergy to bleo. My nurse said that in 23 years, she's never had anyone be allergic, so don't get all freaked out (like I did) that you'll have a bad reaction. The bad thing is that it takes an extra hour for them to give you a small injection, then wait to see what happens.

Vinblastine is the final push. Nothing to note about that particular one.

The D drug is a drip that lasted about an hour. Then they flush you again and you're good to go. While you're hooked up, you can still move around, pushing your IV pole with you. I could use the restroom, get snacks (they had things like pretzels and crackers and drinks for the patients) and just tool around if I felt restless. Sometimes I felt sleepy. You're usually in a recliner, and they had blankets, so some people nap.

We have many different experiences on this board with regard to the time it takes to get chemo therapy. My standard was a 1:45 appointment. I would go in, have blood drawn, see my oncologist for 10 minutes, then go to the infusion room. It took somewhere between 15 to 30 minutes for my drugs to come out of the pharmacy, and then we got started. I was always out of there before 5:00.

Chemo is something you can do with family/friends, or something you can do alone. I took someone the first time, and I would always recommend that. You need somebody to take notes for you and provide moral support. After my first session, I felt fine going by myself. I met a lot of really inspiring people who were also going through chemo, and odd but true, it was a really positive experience for me overall. The nurses were/are amazing and really take good care of the patients. Best of all, every time you go in that room and have your port "accessed," you know you're kicking cancer booty, and that makes it all worthwhile.

I know others here will have tons more information and advice. To all our newcomers, I know it's scary and really not much fun at all...but you'll get through it just fine, just like we all have. Good luck!!

[angie62172]

What a great post Mary!!!

The only thing I would add would be that everyone's protocol is just a little different, so I wouldn't worry if your routine varys a little from Mary's. For example I received the adria as a drip instead of a push. It didn't affect anything differently. That was just how my nurse's preferred to do it.

The first time is definitely the most nerve-wracking. After that it all becomes pretty routine.

Good luck to all the chemo newbies!!! Kick some cancer butt!

Angie

[bbyblueiii]

Excellent idea Mary!!

I am going add a couple:

- The decadron can give you really bad insomnia. Dont be afraid to ask for some Ambien or Lunesta. It worked wonders for me.
- I want to stress the constipation Mary mentioned - nearly everyone will have a problem with it. Get some Senna tablets and up your fiber intake or you will most likely suffer.
- Write down anything that concerns you, even if you think it is silly, and ask the nurses or your doctor next time you go in.
- If the nausea meds dont seem to be working for you - do not be afraid to tell your doctor you need something else. There are tons of different drugs they can give you.
- Please ask us anything at all......

Good luck!

[MaryIN]

Good point on the decadron, Tianna. I was also on oral decadron for three days after chemo. The insomnia was worse than the threat of nausea, so I got permission to quit taking it orally after my first treatment.

I also echo the idea of always telling your doc about side effects. There are dozens of drugs to help with virtually every side effect. Sometimes it takes awhile to find just the right one!

[Hedgehogkate]

Excellent idea, Mary. Kudos to you. ^_^ I have just a few things to add that I unfortunately learned the hard way:

-Make sure you EAT before you go to chemo, if at all possible. I usually never eat breakfast, and the first chemo I went to, my stomach hadn't been fed since the afternoon before... and boy, was I hurtin' after chemo. It was the most miserable chemo experience I had, but I learned my lesson, and always had something to eat beforehand. ...Sometimes, I'd just feel too ill trying to eat something with liquid- like cereal, or juice, because I knew I was going to be pumped with liquid soon enough- but something heavy that absorbs liquid always made me feel better... like a bagel, or a mushy oatmeal.

-Get sleep beforehand!! I ALSO have the bad habit of staying up all night. I did this once before chemo... and never again. I had a fitful sleep all throughout chemo, and every time I woke up my stomach would be churning. Get a good night's sleep, and you'll be stronger for the infusion.

They're common sense, I know... but sometimes, you just try and live your life the way you're used to, pre-chemo... and chemo will bite you in the butt for it.

Ah- also... don't eat/drink food you like during chemo. I had Mt. Dew TWICE... and almost was never able to drink it again, which is a complete shame, because I adore Mt. Dew. ...Also, I don't think I'll ever eat a jolly rancher or wintergreen gum again.
~Kate

[RASC_NY2]

Lady Warriors,
You did yourself(s) proud. This is an excellent series of posts that truely is Chemo 101 for newcomers.
Tony

[julieannie]

Great post! You really summed up my chemo experience to a T.

My first day of chemo, the onc decided to do a MUGA and a pulminary the same day. I didn't end up eating till 3 1/2 hours after my first treatment. Bad idea. I quickly learned to eat foods I don't care about (wheat thins, peach jolly ranchers...don't eat what you love).

Some people have mentioned constipation. I actually find myself having diarrhea the day of and after treatment because of so many fluids entering my body. All that water before, the IVs, everything. Don't forget to follow up treatment with lots of drinking water. Two days after treatment, constipation begins for me. I can't use laxatives before treatment due to the diarrhea so it's an art of finding the right timing.

The most important thing you can bring with you for chemo is someone who cares about you. Having a person there to watch you through chemo, be a shoulder to cry on and someone to laugh with is a must. Your first time will be tough, don't be afraid to have someone to hold onto.
--Julie

[crisiebabe]

Fantastic Idea Mary.
Can't seem to think of anything to add that hasn't already been said. apart from over this side of the pond in the UK I think ports are relatively rare. I got a Hickman line after the first few cycles as my arms were starting to burn from having the chemo put in via an IV. Again procedure for this is no prob, local anesthetic. I think PICC lines are also used over here.
One thing I was unsure about along with many other things was wether to work or not. I think quite a lot of people do carry on working. For me I work every other week as generally I feel pretty good on my good week. But I think this differs for everybody. Personally it gives me normality and I think after 6-8 months totally off work would be a total culture shock when you eventually go back. That said work is of very little importance in the grand scheme of things, kicking cancer's ass is my number one priority nothing gets in the way of that.

Chris

[MaryIN]

Good point about working, Chris.

Some people work; some people don't. I did not have disability coverage, and frankly, never felt bad enough NOT to work. I had chemo on Thursdays, felt okay on Friday, then crashed that night and spent most of the weekend on the couch, resting up to go back to work Monday. Note: the first few chemos were not at all debilitating. By the end (I had six cycles), they took more of a toll. I switched anti-nausea drugs mid-point and that helped, but I was just completely worn out on those weekends. I generally rebounded within a week of treatment and felt close to normal until my next chemo.

[Dswolves]

I have chemo on wednesday I don't work wednesday or thursday but I go back on friday and work all of my good week and monday and tuesaday. Not that I manage to finish my 8 hrs on all of those days! I don't get sick so bad it's more of a really really weak feeling and terrible heartburn. I fight a fever pretty steady on chemo day and the day after too.