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1st Chemo Done

Annabelle41415's picture
Annabelle41415
Posts: 6210
Joined: Feb 2009

Monday and Tuesday went in for 4-5 hour infusion and went home with pump. 20 hours first day and 22 hours second day and this morning had the pump removed. Boy when they say it will last 22 hours they count right down to the minute.

Monday I felt some slight sensitivity to cold in the throat due to the oxi and a little yesterday and today nothing. I felt light headed 3 times so far but passed very quickly.

Yesterday I didn't drink enough water and my stomach was getting upset along with "Bella" my stoma. She didn't like anything that was going on and let me know it. I should have known to drink more, but just didn't. They have volunteers there that would get you what you wanted like water, juice, they even had baked goods, hot chocolate, etc.

Had only two private rooms and I believe 5 single beds. All had tv's with direct TV.

Does drinking more water help flush the chemo through, but if so, is that good because then it seems like you wouldn't get the chemo effect if you drink the water and flush it through your system that fast.

I have 8 treatments (4 months) of mop up chemo. Glad I'm doing it because it is a short time to go through treatments to make sure that I can get it all in 4 months just in case a cell got loose. Surgeon didn't think any escaped and said they he got really good clean margins, got all the cancer and said that surgery went exceptionally well and cancer was barely there in the pathology report, but said with any amount of cancer left, it is better to do this than just assume.

Woke up this morning and couldn't walk very well because it hurt so much in the anal area and found out that the whole "inside bottom area" is swollen from top to bottom, blistered and red from laying on that chair for over 4 hours for two days in a row. With the extensive surgery I had and just going to the surgeon last week and him telling me it is still so swollen down there, well now it's swollen inside and out - bummer.

Let me know what to expect from here. I have Zofran, Oxaliplatin, Decadron, Levo - Leucovorin, 5FU.

Thanks for your input and please keep me in your prayers as I start yet another journey through this battle to kick my cancer to the curb and in the gutter for good.

Hugs!

Kim

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I'm so sorry you are going through all this! Ouch...what a complete pain in the bum! Both figuratively and literally! You have had to deal with more than your share already.

Don't worry about 'washing out' the chemo. It isn't going through your stomach, remember? You won't be able to dilute it no matter how much you drink. Staying hydrated is VERY important and can lessen symptoms. It is so important to not let yourself dehydrate. They will need to give IV fluids and you'll either be stuck in that chair a couple of hours longer or they'll admit you to the hospital - so DRINK!

Thank you so much for updating us. I've been thinking of you this week and you remain in my prayers. Hugs.

Kimby

Edited to add: I forgot to say that not all of your fluids need to come from beverages. I have really enjoyed soups since my original diagnosis - not so much before. I have found that when people ask to help, they really want something to do. I have a freezer full of homemade soups that have been made for me by friends. I freeze it in small containers and pull it out to nuke for lunch or snacks. Tastes great, soothes my tummy and keeps me hydrated. Watermelon is wonderful for hydration and tummy control. I craved watermelon on Oxi. An extra bag of saline is a good solution but I never wanted to stick around at infusion for that. :)

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Your on your way! Yes, stay very hydrated, I was told by doctor and nurses to drinks lots of water, and a high calorie, high protein diet. Will they let you get up when you get your chemo? I was able to walk around with the IV pole if I wanted, and I did, could not take those hard plastic lounge chairs they had where I went. Have you tried or seen the lambskin pads you can get to lie your butt area on? They are used in nursing homes a lot, especially for people prone to bed sores, something like that may help you too. Try to sip on liquids and snack if you can when getting the chemo, it helped me, whatever you find you can tolerate. Hope your behind gets better quick and you tolerate the chemo good. One little thing I did was put a pair of gloves on the fridge to use when getting something cold out of it. You'll get more helpful hints as things come up during the chemo. The nurses there have a lot of good information and experience too.
Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry you're so swollen and in pain. I hope you will be given an answer on a way to make that situation better!

*hugs*
Gail

kmygil
Posts: 881
Joined: Feb 2007

Hi Kim,

I'm so sorry you are swollen and in pain. Hopefully this will pass quickly. If not, perhaps your doc can help you out in some way. I won't recommend ice packs due to the oxaliplatin---been there, done that, as in flinging a frozen roast halfway across the supermarket:-)

However, YES! STAY HYDRATED! If you have to do it by drinking warm tea or something, do it! I got into bad trouble by not staying hydrated, so always keep that in the forefront of your mind. Nutrition is a must, as well. I don't know what you can process at this point, but try to make sure that whatever you eat has maximum nutritional value.

Zofran for nausea, Oxaliplatin/5FU + Leucovorin for cancer. I don't know what Decadron is. I'm sure you've read all about the oxaliplatin--try to stay away from anything cold; this includes touching, drinking, eating etc until you have recovered from the tx. Keep gloves handy by the refrigerator/freezer. Don't shop frozen foods without your gloves! Try not to breathe cold air (luckily it's Spring!) The effects of the chemo are cumulative; be honest with your doc regarding any neuropathy effects before each tx. Ignoring these can make the fx permanent.

I know you're going to do well, Kim! You are a fighter! I am keeping you in my prayers.

HUGS!
Kirsten

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

is a mild steroid that helps the anti-nausea drugs kick in. I have it every time. I even take it orally sometimes the 3 or 4 days after chemo stops.

Lisa, as everyone says HYDRATE. I do hydrate myself, but for some reason my body doesn't absorb it well. Starting day 3 I have to have them hang the saline...it takes an extra 2 1/2 hours, but it sure helps me.

I am off to Day 4 today...no vomiting yet! The Emend really works...

Hang in there. {{{{hugs}}}} Vicki

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Yes...as all have stated....drink water, water, water! You may even try drinking with a straw (if that helps your mouth from the cold sensation).

These are some things (tips) I did while on Oxil. Eating with plastic untensils was better for me (so the metal wouldn't hit my tongue). There is a possibility of muscle cramps...all over. calves of legs, hands, mouth. I found out that when the Oxil was pumped into me at a slower rate, I didn't cramp as bad. Ask you Nurses or Doctor about this. Don't be alarmed when this happens. I was using the "mouse" (computer) one day and took my hand off (the mouse) and my hand stayed in the postition for a few seconds. That was weird. Stuff like might happen but don't be alarmed.

You'll be experiencing all kinds of different things. Tell your doctor and nurses about EVERYTHING all time...Okay? That is important.

You can get through this. You are the hero!

Claudia
Stage III
NED for 2 years

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

Just keep us aware of everyday feelings and we'll head them off as best we can , even try to get ahead of the game for you....if Bella starts acting funny either Immodium to stop the runs or Miralax in a powder form to make ya go. There will be many things come up and I'll try as Im sure will everyone else to make it as pleasant as possible for ya.....Hang in there...

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

I actually had chemo for the first time last Wednesday since my surgery, and the first time with a colostomy! Man, diarrhea in a bag is not fun, here I am still trying to get the hang of this, and keeping clean at the same time, it's a chore, but glad you got through it, and hope you're feeling good today! The diarrhea finally went away (I'm on Folfiri) and it's been more better now. We can do this :)

Hugsss!
~Donna

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

See, nothing to be scared of! Sorry to hear about the sore bum, hopefully that will be better by the next time. I'm just really glad you made it through the rest ok. I actually thought the decadron was almost my favorite part - if I didn't have the pump attached I could have painted the garage while on that stuff! But I did get lots of small projects done on that first night - paperwork, cleaning out cabinets and such, Nick thought I was crazy! Like everyone else says, the chemo is cumulative, so between the 3rd and 5th treatment, some of those side effects seem to hang on a little longer, and at least with me, each time I had different things happen. The only constant was the cold feet and hands. I am a week out of the last treatment, and my hands still bug me, even in 95 degrees if the wind blows. I;m still tired, but not as bad, and my mouth is still bugging me. Other than that, all is well, and again - really glad to see that you made it through number one so well, I never doubted you wouldn't!

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

Kim,
If the nausea gets worse try the next step "Anzemet" then if that doesn't cut it try "Emend"...That is the Daddy Rabbit for Nausea I think...They save that for last normally for the cost mostly ...$100/pill w/o insurance..3 pill pack was $27 for me with insurance so it is expensive....but well worth it...it helped me more than anything but I still had a rough time , rougher than most with nausea...I didn't keep myself very hydrated either...Keep the chin up...it will go by fast now..... :)

Annabelle41415's picture
Annabelle41415
Posts: 6210
Joined: Feb 2009

Thank you all for your comments. Nausea is not even present today. I really do think that the main thing was the dehydration from the ileostomy and the chemo so I'm glad you all reinforced that fact for me. Next time I will know for sure. I have something called compazine for nausea and haven't had to take it yet.

Wow that Emend does sound expensive. That's probably why it is the best on the market.

Feeling better than I thought I would so I'm glad.

Thanks for all your support everyone. It means a lot.

Kim

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

You just make sure that if you get the least bit nauseated take one...Thats what they are there for .......and the oxi...keep on the lookout for cold sensitivity...I tolerated about 55* and up...watch for the tingling that you may start getting in your fingertips and toes. Make sure it goes away completely before the next treatment.(Neuropathy)..Keep the Onc informed of any tingling at all and if it gets worse...If the oxi kicks in where cold drinks are intolerable try Sunkist Orange or Ocean Spray Crangrape..(I haven't had a yeast infection yet......just kidding...LOL) but those 2 drinks are good at room temps....if Compazine quits working try Zofran, then Anzemet, then the Emend...

If I got constipated I drank Nestea with Lemon in the 2 liter bottle and WHOAAAAA !!!...LETS GET READY TO RUMBLEEEEEEEEEE !!!!!!!!!!

So hang in there girl 1 down and just a few more to go........ :)

Annabelle41415's picture
Annabelle41415
Posts: 6210
Joined: Feb 2009

I didn't know that the neuropathy is supposed to go away before next treatment. I will definitely keep note of that. Also, wonderful suggestion on the Sunkist Orange because I was wondering what you could drink that would be tolerable at room temperature.

I did notice Monday, Tuesday that output was much thicker than it normally should be and I don't think that's a good thing for an ileostomy (but I'm new to that part as well). With the Nestea, that has caffeine in it so is that ok? I still drink coffee, but thought with an ileostomy I was supposed to limit caffeine. I don't always do what they tell me anyway :)

Hugs! Kim

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

I was kinda joking about the Nestea. But it really happened to me...I tried it once and it did taste great but it did start the rumbling and in about 1 minute my constipation was GONEEEEE. I would get a jump start on the constipation though...If you think it is getting thicker (and I have never seen an illeostomy so you will have to judge that on your own) my onc prescribed me a powder form of Miralax which I would take 2 days before I started chemo and continue on for 2 days after chemo was completed...But, thats my Dr so yours may be different...just ask or call him if any problems or discomfort arises...
As far as the tingling..The constant tingling didn't start with me if Im not mistaken until about the 7th round and then it would still be around when my next treatment started...so just make the Onc and all Nurses aware of how it goes each trip. My tips of my fingers are getting better but it is a very slow process regrowing nerves endings and damage done could possible become irreversible but not if it doesn't go to far. My feet (toes actually) are pretty numb but its nothing I can't handle. It simply feels as if your feet are getting cold but in all actuality they are warm...
These are just small prices to pay for the end result so keep that in mind as you sail through these treatments..There is a light at the end of the tunnel...and it will be done before you know it...
I am a coffee-holic so I couldn't drink it after my treatment because it changed the smell of it so much...I had chemo on Mon-Wed and it was Saturday before I could drink my coffee again....so the cold thing didn't interfere with my drinks all that much...But I did find that spicy foods the spicier the better were more tolerable for me than anything..I think it simply overwhelmed the chemo aftertaste...
One more thing then you can have your ears back...LOL...if you feel sick and get sick, we mostly all do or did...its a lot to take into a system and not have your body try to fight it off...so if ya gotta throw up, don't try to make excuses for it just let her rip and keep in your mind that THIS WILL NOT STOP ME FROM BECOMING NED...and trudge on sister......It is quite possible though that you will have no side effects at all.....good luck and I hope I didn't scare ya to death.....just stuff to be on the lookout for......... Hang on Sis, your doin great.......

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Kim -

Glad you are surviving your first treatment.

When I was on similar drugs (Xeloda/oxaliplatin/Avastin) I found that being proactive with the Compazine really helped. It's great that you are not feeling any nausea, but if you start to even feel a slight amount, take it and then keep taking it to stay ahead of the curve. For me this was only really necessary the first week of treatment, but I did much better when I took the Compazine regularly that first week. I was able to do fine without Zofran or Anzemet or Emend. Everyone is different, but Compazine is a pretty harmless drug, so don't be afraid to use it.

Good luck,
Betsy
Diagnosed Stage IV, liver met 5/2005

qwe
Posts: 125
Joined: Jan 2009

Hi Kim
Hope you are feeling better I already know about your
case it was so good talking to you on the phone please keep me up dated through E-mail I wanted to come hear and support you. Have a good day girl friend.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

you made it! the first one is scariest and now it's behind you...no pun intended.

You have lots of oxy advice so that is good. I just kept switching drinks from green tea, pink grapefruit juice and the my daughter suggested drinking boxes because they can sit beside your bed at room temp. They really helped me on first and second nights after the oxy and decadron...I tried orange juice and apple....just flip open in the night at room temp and they were good.

I'm so happy your nausea is good so far.....like Sherrie said things may start to accumulate around 4 and 5 but by then you'll be a pro and know lots of tips to cope.

Congrats.....ONE down

Hugs
~mags

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