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Start Chemo Monday

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

I'm probably more scared to start this than having the actual surgery itself. I have already been through radiation/chemo (pill form) and tolerated that very well and then major surgery am told that they got all the cancer and now this is just a precaution, but I'm afraid of the side effects.

Everyone here has dealt with the chemo and I know I will too, it's just the fear of the unknown that we fear the most. I'm now just getting to feel more like myself and now another journey in my recovery begins.

I'm thankful to God that I found this site as you all have been such an inspiration with any question or thought I have had and You All are so special to me.

I got my acrylics off tonight and my hair cut short. Nurse said at the hospital that the chemo affects your nails and they could fall off (never heard that) but I sure didn't want a bright purple nail laying in the grocery isle without me knowing LOL. My hair is so thin and always has been and I know that this is going to thin it more. I'm just cutting it now, so that if I do have to cut it shorter so be it. Although I do have about 9 wigs I bought a long time ago just for fun and they look normal, so if I have to, I can put one of those on. I used to wear some of them to work and no one knew it was a wig.

Did anyone bring anything special to the hospital. My treatments are 4-5 hours for two days, go home with a pump both days and go back the third day to get it disconnected and then have 11 days off and start it again. It's going to be a long day looking at a drip for 4-5 hours. If I started counting the drips, I might just fall asleep - but doubt it. Even counting sheep doesn't help anymore. LOL

Need your encouraging thoughts as I enter this new phase of recovery.

Hugs! Kim

cbcardb12
Posts: 85
Joined: Mar 2009

My husband just completed his 5th treatment with no problems. The first two treatments, he was extremely sick, so he basically slept through the whole thing. Starting with the 3rd treatment, he was feeling soooo much better, that he listened to his ipod or read magazines bought especially for treatment. Actually, I put together a tote bag for him full of magazines, a book he's trying to finish, his ipod, a notepad, pens & pencils & a list of his current prescriptions, just in case. Just like you, he was afraid of what was to come, but he has been fine. His only issue seems to be having to have the pump attached for 3 days. He can't seem to get used to wearing it, he pees constantly, and he's afraid he will jerk it out accidently. But, according to him, the chemo has not been bad, and his hair has gotten thinner, but hasn't actually fallen out too much. And like you, he cut it short right before he started, so that hasn't been a problem.

Hope this helped. I think the anticipation is worse than the actual chemo. Just try to keep a positive outlook, and remember that this will help you.

Good luck & keep us posted.

Carolyn

Wenchie
Posts: 88
Joined: Apr 2009

Hey Annabelle:
I start AGAIN on Monday too. This time I'll be on Folfiri with Avastin. What will you be taking? We can compare side effects! Take care and make a paperchain, cut a link off every two weeks, and it will be over before you know it.
Wenchie

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

I am on 5FU and Oxi and something that starts with a L that is an enhancement, I think a type of vitamin. I'm glad to know someone else is starting on Monday it makes things seem like I'm going through this with them.

Anyone else going through chemo at this time is such a big help to me as I am always reading your stories and knowing what you are going through. I pray for you always.

Hugs! Kim

bdee
Posts: 305
Joined: Feb 2009

Will your doctor add Avastan in a couple of weeks or will it be just Oxaliplatin, 5FU and Leucovorin (you're right it is a vitamin supplement) but you will also be given about three other drugs for your stomach, nausea that will make you sleepy.

I bought an MPG player and downloaded my favorite books or books by my favorite authors that I haven't rented from the library yet. Join with Audible and every month you get a credit and can "buy" for free a book just out. My eyes have gone bad so I can't read for longer than 15 minutes, so having the book where I can listen, go to sleep and then run the book back is great.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Heres how it should go and it should be the same each trip ..or I might say this is how it went with me and I did the same as you will be doing...

They take a sample of blood...making sure your counts are good to go ahead with chemo...

If counts are good they then hook you up to your port and flush it..scary but shouldn't hurt,maybe just a little sting...

They will then get your "cocktail" ready and bring it in starting with probably nausea meds.

In my case there were about 3 hours of drip...including nausea meds, oxaliplatin,leucovrin. Pronounced lu-co-vor-in.......

I found it easiest to sleep through it all or doze...made the time go by fast...

When that is all done they flush again and set you up with your fanny pack.....

The fanny pack makes you look like a tourist...start practicing another language :-)

You usually run 46 hours with the pack. It will beep about 1 hour before it is suppose to come off on the Wednesday...When its empty (and you can tell) just punch pause and then stop and it will shut the pump down...nothing at all to be scared of with the pump believe me its bulletproff.....

It has tubing that is probably 5' long..when I went to bed I would lay the fanny pack on the middle of my bed and let all the tubing out. I would normally wake up the next morning with it wrapped around me once or twice but still never had any trouble with it. They will tape it well enough that you won't have to worry about it getting hung on something and pulling loose..won't happen...

Then comes Wednesday and out comes the needle...Its like having a birthday, it feels so good to get rid of it albeit it wasn't really that bad to begin with.

I normally felt great by the next Saturday and had all the next week to enjoy my freedom, then Monday it starts over again....But its getting closer to the end every visit...Thats the goal, getting done...

I had nausea problems ...even the Emend didn't do it for me.I just had to ride it out...You may not have any side effects at all. Hopefully not but if you do we have answers for it ...

I had constipation the first 4 days then it slowly corrected itself...

Food was a definite no for me until about Thursday and the spicier the better...You will figure out what works best for you, everyone is different...

The one thing I didn't do is stay very hydrated and I paid for it by staying nauseated longer. The hydration helps get it out of your system faster...

If it zaps you for 3-5 days so what..just lay around and get better. Thats part of it.

I honestly think that the scariest part is the unknowing. Once you get your first one behind you the rest will get easier, you'll know what to expect.

Chemo has a tendancy to kill off white blood cells and you are checked before each treatment to see if your WBC(white blood count) is high enough to continue with that weeks treatment, if its not its normal, they will give you a shot of Neulasta or Neupagen. Usually the neupagen is given 2-3 days in a row. This will get your counts back up. If it drops to many times where you are missing to many days then they may set you up as they did me to get a shot of Neulasta just after having your fanny pack removed.

Neither shot hurts at all...If it starts to sting a little tell them to slow down..It only stings if they inject it to fast...One of my best nurses held it in her hands until it warmed up then injected me and I never felt a thing....

You'll be fine..just consider it the end of your treatments and know that hopefully after these you'll be done with it forever......Hang in there...it will be over before you know it....... :-)

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I start round 3 of 4 tomorrow morning. You can do this Lisa. My center provides blankets (made by volunteers) books, puzzle books (yeah!) etc. No TV, as there are too many people who like to sleep through it. I can't sleep, usually, so I chat with my fellow patients. Several of us are on the same routine, so it's like old home week each time. There is always someone I know there.

Hold onto the rope. We are pulling! Vicki

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Hey, Kim.

No words of enlightenment, since I didn't do chemo. Just want to say that I'll be praying for you, and I know you can do it!

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kim,

I'll be thinking of you and praying for you as you start the chemo Monday. I know how intimidating it can be that first time. Trust me, it'll never be a thrill to get it done, but it will definitely become less scary and more routine soon. I think others have told you what to expect well enough, that I don't really have anything else to add. One thing, though- if you start experiencing any itching or any kind of flush feeling during your infusion, let the nurses know right away! Hopefully that won't happen at all to you, but if it does, it's a sign of an allergic reaction to the oxi. When it happened to me, I let it go for about a 1/2 hr and then a nurse noticed herself by then. In the past, I have gotten hives just from nerves, so I had assumed that was what my problem was. Not to alarm you, but just make you aware, just in case.
I think you'll do just fine!! Do you have any Emend on hand to take right before infusion? Buzzard said it didn't help him, but it was a lifesaver for me from the nausea. From what I've heard from some others, Emend seems to be about the best out there for the nausea. You have to take it before you get infused, though. It's by prescription, so you'd have to get the prescription filled & bring it with you. I was always told to take my first pill after they checked my bloodwork and urine specimen, as they were hooking me up and starting the premeds. I also was given two other kinds of antinausea medicine to have on hand. Compazine was one (I have the generic version- forgot the name) & one other in case the first didn't work. Out of all my Folfox treatments, I ended up actually throwing up only once, although I felt like I was going to a few more times than that. Most of the time I did pretty well. I'd come home and lay around, then I would be up most of the night that first night from whatever was in my premeds.

You'll do fine- it sounds like you have faith in God, so just believe He is there with you and helping you.

Take care,
Lisa

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

you seem like a tough one.i cried the whole night before the first one but its not all that bad.take a light blanket with you the oxy tends to make me cold.i just finished #5and it was a bad one.i have got the sores in my mouth now.dont want to scare you as everybody is different but i am having a hard time with this crap.i will be on #6 on tuesday,if i loose anymore weight maybe they will change my dosage.last time my weight was 102.before my surgery i was on chemo pill and radiation for 5 weeks i got down to 94lbs and was put in the hospital.good luck to you and i know you will do fine Godbless.....johnnybegood

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

Just like Johnnybegood, I cried the night before (actually the whole week before), treid to look brave when I got to the chemo center - until they called my name, and I broke down crying, I was so scared. I hadn't actually found this site yet, had no idea what to expect. That is honestly the scariest part of the whole thing.

Buzzard has the whole process nailed to a T! If you read any of my posts, I experienced a little of everything, but nothing so severe I couldn't handle it. Have your gloves on hand at home (for the fridge), however having a slave to do things for you works better (sherrie humor there), find something to drink that you like at room temp, you'll need that for at least the 3-4 first days. I didn't notice constipation in the beginning, but I learned to take an immodium on the day I was getting unhooked, and Friday after that. I always got nauseaous on the way home on the first day, only tossed my cookies once. I could still eat, but only cause my stomache said it was hungry, food doesn't taste like anything (still really doesn't unless its spicy). I lived off of pancakes, french toast, scrambled eggs and chicken or potatoe soup.

One of the hardest parts is sitting there for the hours. The nurses keep you company when they can, and I developed a great friendship with Karen, my nurse. I brought magazines with me, books, but found I didn't feel like reading, usually watched movies. Warning, just incase - I found that tears hurt my eyes, therefore, bring funny movies and laugh, no tear jerkers! I also can't change my contacts while this was going on (learned that the hard way). Nick came with me during my infusions also, he would go grab breakfast for us, and I would eat and drink my last cold thing before she started the oxy.

The first few were easy, but as everyone says, the stuff is cumulative, so as it goes on, the side effects stay with you a little longer, and you get a little more aggravated each time. Point being, I finished Thursday, and today my hands and feet are so cold it's hard to type! Of course our weather here isn't helping any (it was 30 something last night and I didn't turn the heat on). I keep advil PM on hand for the night I can't sleep, vicodin for the leg cramps and headaches that I got, immodium for you know what. I also had emla cream to put on the port so the stick wouldnt hurt (didn't help much). A secret that the nurse gave me was chewing on ice chips for a little while before she started the oxy, it apparently is supposed to help not get any mouth sores. I only had one, but each time the inside of my mouth swells up and feels raw. I did the ice chips once, but I have bad teeth and the cold hurt, but it did help. however they have mouth wash for that too. I also took zyrtec, for allergies since they seem to have gotten worse, and it helped with whatever itchies I had.

Kim, you'll do great, and we are all here for you!

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

The unknown can be frightening, but if this is any consolation, we are all here and most all of us have gone though chemo. It's not a whole lot of fun, but like spinach, it will help you (I almost said it's good for you - but it's what you need at this time)

I think all of the suggestions are good, books, Ipod, some places have TV's, I've brought laptops, DVD players and often just slept. I also cut my hair short but it never feel out from what I was on. Chemo is used to often kill cells that grow fast, namely the cancer cells. Hair and fingernails also grow fast so they can also be affected. Not all the time, just sometimes.

For nausea, they was a recent news article (check this board) about the effects of ginger taken before chemo and how it helps with nausea.

I'll be thinking of you Kim, you will get through this.
-phil

shoppergal
Posts: 118
Joined: Mar 2009

I believe that Buzzard explained it exactly the way it will be and there is nothing to really add!The place that I had my chemo, had TV to watch,I also brought a book and some food to eat in case I got hungry. It was always something light because I never was really able to eat much on chemo.

It's just like you said, it's the not knowing that's scary but after the first time you'll be a pro. Good luck I know you'll do fine!

Johnnybegood, I had the worst mouthsores thru out my chemo, to the point that I couldn't brush my teeth. Talk to your onc, they can give you something that's called magic mouthwash, it numbs your mouth so that it's not as painful. I would get the sores right after chemo and by the time it would get tolorable, it was time for chemo again. Just know that it does get better! Good luck!

bdee
Posts: 305
Joined: Feb 2009

I have to see my doctor first before I can go into chemo and my first day I was so scared I was crying at everything. So many people in the waiting room came over to give me a hug or just tell me their story regarding chemo. It was so nice that by the time I got to the chemo room I was prepared. Any my chemo doctor has a private suite for first time chemo users so the nurses can prepare them in private and explain all about the experience I will have.

My nails have grown longer and stronger since I started chemo. I've heard you nails fall out too, but mine haven't yet after 11 treatments.

Good luck, if you're scared when you get there, talk to other people who have gone through it or going through it. Believe me, we aren't shy about telling you our stories.

Good luck,
Debbie

rrob
Posts: 160
Joined: Nov 2007

Kim,

I remember how scared I was to start chemo, at the same time I was relieved because I felt like I was doing something to fight my cancer. Everyone reacts differently to chemo, so I am hoping you will be one of the lucky ones with very little or no side effects. The side effects I had the first treatment were muscle cramps in my legs and that strange cramp in my jaw. I did get nauseous the first day, but I think it was because I scarfed down a huge baked potato for lunch and promptly lost it before I left from my chemo! The chemo is manageable-even with side effects, it is something you can do. My description of my chemo was that it was like a friend that was helping you, but that you really hated! Just picture the chemo as your army, killing any cancer cells that may have tried to hang around after your surgery.

I would take anything that will give you comfort. Friends had given me a special bracelet when I was diagnosed and another friend had given me one that said "Believe" one one side and "Expect Miracles" on the other. I never took those bracelets off and when I would get stressed or down, I would rub them. I also took sunglasses because the bright lights in the chemo room combined with the chemo would give me a headache. I took my Ipod and a couple of good books to help pass the time. Just remember, for any side effect, your oncologist has something to make it manageable. Don't be afraid to ask. Good luck and know that everyone is thinking of you!

Rebecca

JR's picture
JR
Posts: 140
Joined: May 2009

Kim - I hope things are going well for you. I just finished my fifth treatment and things have not been nearly as bad as I expected. I get my treatments on Wed"s and my pump off on Fridays. Usually by the following Monday I am feeling like myself again. You hang in there and fight like crazy.

John

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I hope you made it through alright! It wasn't as bad as it seemed though, right? You are in my thoughts, and hope everything went smoothly.

JR, mine is the same...I go in Wednesdays, and the pump comes off on Fridays, then bedriddent most of the weekend, till at least Tuesday, I feel good today, once we feel good, then we have to get more chemo...woooppeee! But I'm one behind you in the treatment..just finished my fourth.

Hugsss!
~Donna

pamjay's picture
pamjay
Posts: 7
Joined: May 2009

Hi Kim,

I know you've already started your chemo, I just had my first session on June 1. I took my portable DVD player and DVDs of old sitcoms like Becker, Mash, Wings, etc and a couple of seasons of Becker and Newhart. These are shows I really like but have seen many times so I can easily get sleepy and doze off when watching since I know what's going to happen anyway and don't feel complelled to keep watching. Books are good as reading can sometimes be a good way to get sleepy of maybe music on an IPOD or if you are old tech in that regard just a walkman.

Good luck,
Pam

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Kim,

How did it go for you? Do you have any tips or tricks to share from your experience? I just read these posts and they were very helpful to ease my anxiety. I will be getting the Port this Wednesday (June 17). The following Tuesday, will be my first Chemo.

One concern is that my bowels are still unsettled from the surgery. Can we go potty often? Do you have to be unhooked each time?

I am packing a tote with magazines and snacks. Do you have any other suggestions?

Can we shower with this fanny pack?

Thanks to all who respond. I am just a little nervous.

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

My first chemo was actually better than I expected. Very little side effects and they went away within several hours. Second treatment the side effects lasted for five days but don't go by me because we all have different "cocktails" and it affects us differently. I'm actually going in for treatment number 3 on Tuesday.

Can't tell you about the bowels because I had an ileostomy with my surgery, but I do have to empty my bag at least once if not twice in the 4 hours I'm there. You definitely can go potty and no you don't have to be unhooked, just take the IV pole with you.

I don't shower with the fanny pack (I have it for three days) and do the complete sponge bath at the sink or in tub with fanny pack on the side. I have a long enough tube to at least put it on the edge of the tub or sink to wash.

Magazines are great along with a portable DVD player if you have it and books if you like to read. We have individual tv's, but no computer access.

At our hospital, they provide snacks and someone always brings in home made goodies and sometimes several to choose from. I actually made crumb cake to take into my hospital on Tuesday and will make brownies for Wednesday.

Being nervous is normal, and I have cried each day before my last two treatments. I'm scared too as each treatment is different, but you will do fine. Just let us know how you are feeling.

Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kim,

It sounds like you're handling things alright & you're now giving out advice! Isn't it amazing how we become stronger through all this we experience, that we can then be the "wise ones" giving out advice?!
I just had my first Avastin infusion in my new oncology office on Tuesday. It's a very nice place- bigger than the old place. Nurses are all very nice, too. The nurses were nice at my old place as well, in fact I think I'm going to go by there to take them something and say my "thanks and goodbyes", as they knew I'd be making the change, but ended up making it kind of abruptly a month sooner than we thought at the time I saw them last. It's funny how you can get that bond- they have helped me for more than a year and a half of chemo now- I will miss them- two of them in particular.

Hang in there! I remember the days of the pump. How I hated feeling so yucky with not being able to shower for those three days (can you imagine in "the olden days" how they'd go without bathing for a week?! I guess they didn't know anything different then, though)

Take care & hugs to you!
Lisa

grandma2selena's picture
grandma2selena
Posts: 200
Joined: Jun 2009

Hi Kim,

I was so scared as well to start Chemo. I didn't have the first idea of what to expect to be totally honest with you, even though I had seen so many others I just didn't know what to expect for myself.

I always took a soft blanket, well actually the Cancer Center gave me one everytime I had my Chemo, they were made by a church group and donated for all the cancer patients. Anyway that felt so good and warm and safe while I layed in the recliner.

Of course the first side affect I noticed was my taste buds were gone, which to me was very frustrating, as the food smelled and looked so good and then not to taste it was disapointing. As I stated before I really didn't fight much nausea, but had more anxieties which the Dr gave me Lorazepam for. I was in such a fog I had a difficult time reading, so I started copying my books (well the bible) word for word in a notebook, that took my mind off everything else that was going on around me and how I felt.

You sound like you are preparing yourself, which is good, in cutting your hair and removing your nails, I think preparation along with positive thinking and a strong faith, especially in yourself, is the first step to managing any affect that might come your way.

You sound very positive and hey the only thing we truly have to fear is fear itself!

God Bless and I will be keeping you in my prayers!

Debbie

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Thanks so much for your response, Kim. Your comments helped so much!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

What type of shirt should be worn for Chemo? Buttoned or Tee Shirt? Thanks.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...a button down shirt, since I have a port, and it's easier for the tubes to just come out right there in front, instead of going underneath the bottom of a T-shirt, but, it's up to you! The nurse told me it was easier for them to access the port through button down shirts though.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I will get my port tomorrow. Thanks so much for your response!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I had my first chemo treatment yesterday. It wasn’t nearly as bad as I
imagined. They had recliners all around for the patients. There were many patients. Blankets and pillows were provided. There were a lot of nurses available. Some volunteers went around offering crackers and drinks.

I have had some minor side effects such as sensitivity to cold. All drinks must be room temperature. I can handle that. I left with a fanny pack which will be a continual infusion for 46 hours. On Thursday afternoon, I will return to have it disconnected. My next appointment is on June 30. At that time, I will have the port flushed. I will also have an office visit with the oncologist.

I felt well enough to go for a short walk yesterday and to do some light shopping.

We have been juicing carrots, lemons, apples, and ginger.
My stomach is much better.

Life is good.

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

Glad to hear that your first chemo went well for you. I know it is a scary thing. Yes, we have volunteers too offering things to eat and drink. I usually bring my own water bottles since most of their drinks are either hot (coffee, tea, hot chocolate) or cold (juices, pop, etc). I have chemo infusions two days (3 1/2 hours) then go home with the pump both days and then get disconnected on third.

I felt the cold sensitivity too and it's weird not to be able to drink anything cold.

Kim

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Kim,

I had a delayed reaction to the chemo. I had some constipation with rectal bleeding. I also felt nauseau and weak. Pretty much unable to do anything but fold a few clothes and wash dishes. Have you had any changes? I have been juicing and taking ginger capsules. What do you eat? I have been having jelly toast, baked chicken and spaghetti. Thanks,
Liz

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

Awww that is a hard question. I eat what I want, but it's not always what I should. I tend to eat a lot of vegetables because it sounds good but there aren't few calories in them. I seem to stay away from proteins, carbs because my tummy feels bad trying to digest them and if I do eat something I feel so full I can't eat for 7-8 hours after. Usually the two days before chemo begins again I'm eating pretty normal, just not a lot.

I get so tired and it's only been three treatments. I have been getting very emotional lately too, like I have PMS :) but I know I don't. I also have been getting very irritable and I'm not sure if that is from chemo or not.

The two days I sit in the chair at the hospital, I always have bleeding from the rectum. Doctor told me not to worry about it and said it is due to the healing up inside. Weird it's just because of the hard chairs, but it does hurt so very bad when I sit there for so long.

Kim

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Ok. I feel better about the rectal bleeding. Thanks for your support and quick answers!

Liz

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Which veggies do not hurt your tummy? Thanks.

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

Fortunately I have no veggies that hurt my tummy. I always ate so many before surgery so eating vegetables now are no problem. Because I have an ileostomy, I can't have corn because of the hules, no popcorn either :( I hope you are feeling better. I go in tomorrow (Monday) for my 4th treatment).

Kim

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