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Starting Chemo - Questions

Gail78
Posts: 5
Joined: Nov 2009

My sis is starting chemo next week and has not asked any questions regarding what to expect regarding side effects. She's having 3 chemo drugs and then something called 5fu in a pump for a couple of days. What's the chemo like - does it knock you for a loop, or is it pretty mild? Hers is going to be every other week. Does she need to stay away from raw fruits and veggies? What about pets? Should she wear glasses instead of contacts? Will they do blood work to check her white count? Does she need to limit contact with people?

Any help would be much, much appreciated!

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Gail,

I am sorry to hear that your sister has to start chemo. As for possible side effects to expect, that will depend on the drugs she is on. My oncologist gave me a sheet about each drug before I started treatment & I still refer to them fairly frquently, especially if I am feeling something different. The sheets tell you what to do for various side effects & when to call the doctor or go to emergency. Before each treatment they do test my blood. If certain counts are low, they may delay treatment or give her something to boost her counts. So far I have only been delayed once. With regards to diet, it is probably a good idea to talk to her oncologist & dietician; everyone's case is different. I have a degree in nutrition but I am not expert in oncology nutrition, so I check with the experts. Please give your sister my best regards.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Hi,

Your sister should have been given more info from her doctors. I'm disappointed they haven't filled her in better. I would insist they answer these questions before she starts.

I was told not to change the litter box for the cats, but no warning to stay away from pets.

Avoid sick people - chemo drops your blood counts.

Expect some level of nausea (from mild to severe), and some level of fatigue (mild to severe), and some GI upset - constipation, diarrhea, or a combo. I find I am constipated the first 4 days, then it switches the other extreme for a day or two.

Everyone reacts differently. Some tolerate chemo well, and others really struggle. The thing is, if you speak up, they will tweak things to try and make the next treatment go easier. Make sure your sister speaks up about anything that was particularly hard for her the first treatment, before starting the second.

You haven't said for certain what drugs she will be on, other than the 5-FU. I have a feeling it may be one of the standards, FOLFOX. This is 5-FU, Leucovorin and Oxaliplatin. If she gets oxaliplatin other side effects to expect include neuropathy - some of which you want to be prepared for (especially sensitivity to cold in the hands and throat).

Here are links to good info on all three of these drugs. Make sure you find out exactly which drugs she is getting so you can look up the right ones if these are not right.

http://www.chemocare.com/bio/fluorouracil_t.asp

http://www.chemocare.com/bio/leucovorin.asp

http://www.chemocare.com/bio/oxaliplatin.asp

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Sorry you all are going thru this however you have come to a great support forum. As said above, you need to get much more information before starting chemo. Things that we wouldn't even consider as a problem can be when you're on chemo. I had very strict diet restrictions. I'm sure they will give you all the literature, but always write down every question you can think of and go over it at the visit. One thing that is very important is to get any dental work, cleaning etc. done before you start chemo. They don't want you to have to have any work done while on chemo.

This is a wonderful place for support, comfort, venting, a kick in the butt(when needed), education...you name it. This is definitely a soft place to land. You are in my prayers.

Blessings to all,

Debbie (gramma)

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

To a wonderful, humble family! I hope we can be of some help to you, you didn't state what kind of chemo your sister was getting, she would probably be getting Folfox (5fu, oxyplatin and others) or Folfiri (5fu, Irinotecan, and others) I can only tell you what my experience is, as I am on the Folfiri regimen with Avastin, which is a drug that cuts off the blood supply to the tumors, which starves it, and actually, it has shrank my liver tumors. I am Stage 4 colon cancer with liver mets.

What they do to me first when I get to the infusion center, is to draw blood for the labworks, and make sure your blood is well enough to get chemo, they do check the platelets, and WBC's and all that, bring something like a book, movies for a laptop if you have one, music, because chemo day can be long. They will access your port, and flush you, and all that kind of stuff.

They then give me something to eat, because they don't like pre-meds being given on a empty stomach. I am given anti-nausea drugs first, like Emend (which takes an hour to kick in), 3-Dexamethasones, 2 Zofrans, and compazine, but these past 2 treatments, they been giving me shots of a longer lasting Zofran, which lasts a week! I just take the dexamethasone, and compazine now.

Once the drugs kick in, that's when they hook me up to the chemo.. first the Avastin, then the Irinotecan, and yes, I have the pump, which is filled last with the 5fu, that is hooked uo to me for 46 hours, and a home health nurse comes to my house to disconnect me.

This is just the short version, but chemo isn't what it used to be, and it doesn't hurt to get it, what would be good, is if she has a port, to get a prescription for a lidocaine cream (Emla cream) which you can glob on top of the area the port is, and it numbs the skin, so she doesn't feel the needle going in, it works wonders!

The side effects are a different story, different for everyone, some people sail right through it, some don't, I was horrible the first time, because the nausea was so bad, I couldn't eat, drink or anything, I slept most of the time, but the meds they had me on didn't work at all, so that's when they started giving me the Emend, and it's been good ever since. Keep on top of the nausea, by taking the anti-nausea pills, even if you aren't queasy, every few hours, also maryjane does help the nausea ;)

The fatigue can be annoying. She may feel it more the day after she becomes unhooked from the pump...very tired, just wanting to rest, and that's ok, let her rest, it may take a few days till she starts perking back to herself, and then by the time you feel good, you have to go back for another treatment.. ugh! But she will feel better with it, chemo made me feel better, as soon as all these tumors were shrinking, and the bloating was gone. But make sure she drinks plenty of water, lots of fluid, flushes it out of her system...

I'm not sure about the eyeglass thing, I don't wear glasses, but I will say, she will be leaking from her eyes, I know I do, where you can feel the sandman coming, and it gets all dry, once I yawn, I swear, I am a puddle in my eyes it feels like lol...she may also experience leaky nose syndrome as well heehee, like me! But I don't think I'd wear contacts while chemo is on.

I did have some hair thinning, but never lost it all, didn't even lose my eyebrows or eyelashes, and I'm on like my 16th treatment soon.

I hope I been alittle help, I'm sure more will come to help you, it all depends on what chemo she is getting, and what she can handle. She will be ok, and we're here to help you all, so come on back if you need anymore help, or even just to talk!

Hugsss!
~Donna

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

I too, just got a printout of the drugs I'd be getting with a list of side effects, but I wasn't "prepared".

The first chemo treatment may be the roughest- fatigue etc. For me it was, but eventually not so bad.I got to the point where I'd just sleep the entire time.

Be prepared for a longer day than anticipated- depending on how busy the cancer center is, even though the infusion may state 240 minutes, add an hour on!

The routine for me was - BloodDraw, an hour later Oncologist Appt (she looked at blood work results then put in chemo drug order to pharmacy) then Chemo.

Some folks get nauseated and some get diarreah on various chemo drugs. Your sister will get an anti-nausea drug at chemo time. I never got nauseaus. I had a colostomy bag, lots of diarreah, but different due to my situation.

48-hour pump- I also had that- it's not so bad. Just having to get used to carrying the bag/pump around and not forgetting to bring it with you when you get up in the middle of the night to go to bathroom! I didn't shower those 2 days until after I was un-hooked.

I take it your sister had a pora-cath in her chest?

Raw veg gruit- no need to stay away from those unless they bother her directly. Same with pets.

As she accumulates more chemo in her system, she will be more suseptible as white blood cell counts go down. I had people wash hands etc when they visited. I didn't go to crowded places the first 2 months...etc

Everyone reacts differenctly to chemo, Gail. A routine and expectations will eveolve as your sister gets a few treatments udner her belt.

I was really really sick when I started, i couldn't sit up straight, was very weak etc...I remember looking at other patients all happy-go-lucky, knitting, reading, talking with their chemo buddies and I thought" wow, i hope that's ME someday"

Best to you and yur Sister..

Also, the nurses at chemo are ususally the best source of info- how to handle side effects, tips & tricks etc..

Peggy

coloCan
Posts: 1956
Joined: Oct 2009

By now you know we all respond individually to chemo (and radiation/surgery as well)and each treatment has its own side effects. My first chemo included oxy plus Xeloda and radiation and its main impact was extreme diarheaa, dehydration (at one point), moodiness, extreme fatigue, loss of appetite at times, tingling in toes at soles of feet, could not drink or touch cold items, did not have much nausea, did have weight loss, low blood counts,compromised immune system.....Also, effects were cumulative-by fifth week I thought I would die after chemo session(which happened to be my last,luckily, tho radiation continued)After rad ended, I had a time to recuperate abit and then a colostomy.Two months later and now I've just begun my second chemo treatment, this time FLOFOX with the 46 hour pump you go home affixed to and then, in my case, return to cancer center. There is much to learn from the people here who have lived thru what you are about to experience......Steve

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

My hubby just completed his fist round of chemo for colon cancer. Yes, you get blood tests before infusion and he got them the week in between. Our chemo was at the onc's office, he has a chemo suite. This is much easier than the hospital. He would get his blood test, then about 10 minutes later infusions were started if the tests were ok. The onc has a blood lab in his office also so no running around and waiting for results. He tolerated all his treatments pretty well. His anti nausea drug was Anzamet administered through the port before actual chemo drug and it worked like a charm. Never experienced nausea. Then Decadron (steroid), Oxy, 5FU, got the pump (5FU in the pump)and he was out the door in about 3 1/2 hours. On day 2 he got the 5FU again, Avastin and refill on the pump. Day 3, pump off. Many get all their drugs in one sitting but ours was over 2 days. I think someone else on the board had their drugs over 2 days and not all in 1 so maybe they will chime in. Don't know why it was over 2 days but that is how our oncologist does it. Maybe the side effects are tolerated better over 2 days rather than all in 1. Day 2 was only about 1 1/2 hours. No restrictions on pets. We have a cat. Everyone is different but George was able to continue working while getting chemo, even went to work with his pump on. The Decadron gets you a little wired so sleeping may be interrupted. Does your sister have rectal cancer or colon cancer?

Gail78
Posts: 5
Joined: Nov 2009

Thanks so much to everyone who has posted. Guess I need a bit more information from my sis/her doc! Hopefully, the doc or nurses will give info at the first treatment. Now I have
a better idea of what to ask.

My sister has rectal cancer. Is that alot different from colon cancer?

Annabelle41415's picture
Annabelle41415
Posts: 6481
Joined: Feb 2009

So sorry that you have had to find this board regarding your sister. I agree that your sister didn't get much information from the doctor. I'm hoping that someone goes with her everytime and that someone is there to take notes for her. You have come to a very caring, giving group that can only add to your sister's care and concern. There are a lot of people on here with different types of chemo so to be more specific would help. I was on the big three. Folfiri. This has more side effects than the other chemos. Be sure that she gets the regime that she is going to be on as you and her need to be prepared for the side effects, if any, to come. Tell your sister she is being thought of.

Oh just saw your post - yes treatment for colon cancer is different than rectal. She will probably be getting the Folfir. Let us know.

Get some more information if you can. Again, welcome and you have a great family here, new, but great :)

Kim

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

a chemo cocktail of Oxaliplatin/Leucovorin/5fu (the 5fu will be in a pump delivered over a 46 hr period while wearing a fanny pack)

infusions usually lasts 3.5 hrs the first day then 2.5 hrs the 2nd day then the 3rd day the pump will run out and be taken off around 1 pm...Thats if you start chemo on monday morning. You will go in and they will take off the pump which has been connected to your port (or PICC line) whichever was chosen and then flushed ( I believe the term is a bolus push) when removed.....then on the off cycle you will most likely go in for blood work to assure the counts are all good to go. WBC Platelets RBC, Hemaglobin, etc all have to be certain levels to get the treatment the following week. If your counts are low (mainly WBC) then a shot of Neulasta or a series of 2 or 3 shots of Neupagen will in a day or 2 have your counts back to normal or at least high enough to continue treatment. Side effects of Neulasta or Neupagen are lower back pain, slight headache, or just overall soreness in the joints to go away in a day or so...nothing normally very serious.
If side effects of treatment get to rough have them slow them down a bit , sometimes this lessens them. Some people have no problems at all and hopefully you are one of the lucky few that don't but keep the Dr and the nurses completely aware of how you feel. Some people have reactions to the chemo so if you feel any immediate itching then you may be having a reaction in which they will get some Benadryl epi penned into you to react immediately. They are constantly watching for anything abnormal but you need to have her stay on top of how she feels at all times, also keep a close check of how her feet and fingers and extremities are after each treatment, also no cold liquids drinking, or handling ice or even cold door knobs after a while will be painful but will pass after 2-3 weeks of being done completely with treatment. The neuropathy (nerve ending damage) is sometimes permanent so be very aware of how bad it gets and chemo is cumulative. It doesn't leave the system as fast as every 2 weeks so it accumulates in the body making side effects more and more significant each treatment.
Just let your body tell you what it needs and it will and most of all, patience, patience, patience....and keep us informed about how she is doing and we will do our best to keep the information out to you....Much love and hope for you both......Buzzard

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

HI GAIL!

If it is folfox she is starting,the oxilaplatin causes peripheral neuropathy,when ever you touch something that is cold,you get pains in your fingers,or if you drink something cold,
you get pains in your throat,Mine was with room temperature as well,I wore thin gloves covered with a pair of surgical gloves to handle food from the freezer or fridge.If you do get pain.run your hands under warm water and that should stop the pain,Bundle up good when going outside as the cold air on your skin could cause pain as well. they can give you meds for nausea.
google FOLFOX and you should come up with several websites that you can print info from.
you can buy surgical gloves (or ones just like them) at beauty supply stores,I paid $6 for a box of 100.
I'll keep her in my prayers
good luck
GOD BLESS
KATE

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

pABOUT BLOOD TESTS,
I LIVE ABOUT AN HOUR FROM THE HOSPITAL I GO TO,AND I WOULD GO,GET MY LABS,WAIT 2 HOURS,ONLY TO BE SENT HOME ,OR WAIT ANOTHER HOUR TILL THE PHARMACY MIXED THE STUFF (already 4 hours invested)Then the pre meds, the infusion, the pump being hooked up (another 4-5 hours)
Then another hour ride home
I have a quest lab near my home so I got my doctor to give me a script for weekly cbc's with diff.that way I go get my labs about 3 days before my scheduled chemo.If it's a no go,my doctor calls me the day before and I do not even bother to go in.If all is well with labs as soon as I get there they order it from the pharmacy.Chemo is tough enough and if I can figure a way to make it esier or less time consuming,I will.
the labs usually take appointments and I've never waited longer than 20 minutes

GOD BLESS
Kate
P.S. I had no problem wearing my contac lenses

Gail78
Posts: 5
Joined: Nov 2009

Tomorrow is when my sis is supposed to start her treatments. She hasn't been feeling good, cold or virus or something, so I don't know if they will go ahead or make her wait until after Thanksgiving. In a way, I hope she has to wait so she can enjoy Thanksgiving, but on the other hand she's anxious to get started. I don't think I mentioned that she's stage 4
and has a tumor on her liver. They're going to do the surgery for her liver sometime during the chemo. Is that how they usually do it? To me it would make more sense to have the liver surgery and then do chemo. But since I'm not a doc, I'm keeping my mouth shut!

Thanks for all the info!

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

...Sorry to hear about the virus bug going around, I'll tell you though, the chemo will make her feel better once she starts her treatments, and feels those tumors shrinking. I am inoperable, so I was never able to have the liver surgery, but you never know, maybe one day I will, but I have multiple mets to my liver, they explained it as like shattered glass on my liver, near arteries and vessels, so she's lucky if she can have the surgery to get those nasty tumors out. I hope she feels better by Thanksgiving, maybe being around family and all that delicious food will make her feel better, tell her to drink lots of fluids and I hope you all enjoy the holiday!

Hugsss!
~Donna

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