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Back in the dance. Took some time off to think about turnips.

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

I really liked that turnip story. Needed time to let my head rest (it didn't really but it wasn't constant). Back at Sloan this week finally. Got my pill scrip for chemo. We're going for 5FU (lol you know exactly what I was thinking when I heard those letters . . yeah you can say that again!) and low dose radiation every day (except weekends) for 5-1/2 weeks at the Sloan 53rd annex which is 11 blocks from my job. I'll either go before work or at lunch. Does anyone have an opinion on pills vs. port and what time of the day is best for chemo? Pills seem odd, I don't know why and I would imagine that first thing in the morning is not the best idea because you're setting yourself up to be sick the whole day. Unless they offer a 7:00pm appt., I'd have to do my lunch hour which I can make fairly late. I meet with the radiation oncologist to figure this all out on Thursday. I haven't done any research on it yet. I've been tired from trying to make up all the missed work. I'm working 10 hour days plus travel time. Pooped. Pun intentended.

Annabelle41415's picture
Annabelle41415
Posts: 4230
Joined: Feb 2009

I've done the oral Xeloda and you are supposed to take it with food. I'm not a breakfast person so eating something in the morning was hard for me. A piece of bread was all that I'd eat, but never got sick on them but it all depends on your doses too. My radiation was for 6 weeks and I'm sure it wasn't low dose because it burned my anus and inside of rectum where I'd shed the skin from inside. I'm sure that you will be able to handle both though as a lot of people do. Radiation does make you tired and with the Xeloda you can get the hand and foot problems, but it never happened for me. Good luck with what you decide.

Km

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Welcome back, Helen. I've never been low enough in my treatments to be able to go on pills, so I can't say which is better. As for an infusion through a port, it's not something you can do on your lunch break. Infusion takes about 3 - 4 hours depending on the amount of meds they have to administer. The side effects are also accumulative, so a first you'll probably feel fine after an infusion but then you'll become more and more tired and what I think of as "foggy." I usually get infusion on Tuesdays and then wear the pump for 48 hours. So from Tuesday morning when the sedatives start to kick in until Friday or even Saturday I'm very tired, have difficulty thinking and get confused pretty easily. It would be a very difficult thing for me to try to work for those days after treatment.

But, no matter how bad the side effects are, the alternative is much worse.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I don't think I've heard of anyone getting chemo. infusion while getting radiation (I could be wrong, and I probably am). But, what your getting seems to be the norm.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

If you got a large sucker tumour they want to fry.
I did and they did and well the pain was life changing, look at me now.

No wonder I try a few things to avoid that, I would be mad not too.

The 6 week is called long course therapy, the short course is 10 days.

Hugs,
Pete

danker
Posts: 735
Joined: Apr 2012

I too had 5 weeks of radiation Monday thru Friday. My 5fu ( I agree with you) was delivered at 1 1/4 cc an hour 24/7 with a chemo pump to my port. If you get bottom burned, try RADIAGELavailable. at walmart. Diarrhea was my only side effect, which was (and continues to)be controlled with LOMOTIL. THE DR HAS TO PRESCRIBE IT. After a 6week rest I had th resection needing an iliostomy. 7 weeks withe the bag before the takedown. Developed fistula needing bag for 6 more weeks, But fistula healed itself from the inside out. The following year colonoscopy found me NED, Another year has gone by living a normal life.,still NED. You too can do it being much youger than me.
The best of luck to you.

smokeyjoe
Posts: 1428
Joined: Feb 2011

There ya go danker proved me WRONG!!!

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

I'm so glad you are NED year two=) That's fantastic!

steved
Posts: 836
Joined: Apr 2004

I did 5FU infusions previously before oral capecitabine (xeloda) was available and did it alone as well as in combination with radiotherapy. I did manage to work throughout as, if I remember right (was 8 years back), the 5FU was an iv push so just had a line put in each time. I also did the 5fu ball where it slowly infuses over a week through a PICC line though don't think that is what you are talking about.
I have also had many cycles of oral capecitabine (xeloda) and am still on it. I seem to tolerate it well- am a bit tired but then I have cancer and take loads of opiate pain killers so hard to know what causes that (as well as having two kids and a full time job so I think feeling tired is fairly normal). Otherwise I don't massively notice much. Others do get more affected but you may not.
As for radiotherapy- is an odd experience of popping in lying down, getting zapped and leaving feeling no different. the effects do build in tmie and for again it was mainly tiredness. However again it wasn't so bad as to stop me donig much and still managed to work.

Find out the details of the regime on offer and the common side effects but don't plan on getting them- it is very variable, you are fairly young and active and I would hope may find you can fundtin well on the treatment. do make contingencies in case you do get side effectsbut don't assume they are inevitable. My preference for convenience is the tablets- yes it feel like something that goes iv should be more efffective but there is no evidence taht is so.

steve

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

Hey Steve, I'm already tired from all the overtime I (used to) do (although they're allowing me to make up hours so sometimes I'm working 10 hours straight through) so I figure I'll be a walking zombie (I've actually been tired for years, it's my normal) but thankfully my workgroup has offered to hide me in the walk in closet and let me sleep. Also I have an emergency I can't go home tonight pickup system in place with 2 drivers, I'll ask my sister to be 3. My only thing is I am the side effect queen! I don't take medications because of it. Most of the time when I take meds, the side effects are worse than the actual illness so this is going to be interesting. I even still take amoxicillin as an antibiotic because of it. I'll just have to deal obviously. I'm going to keep a few sets of clothes at work. One of the lawyers where I work just pulled it off and he gave me a few tips about extra clothes, a bottle of Imodium at all times, keep a gallon water container filled and he is out for surgery so he said I can go to his office and sleep under his desk because his door has a lock. I really hope this is doable. Thankfully I also have no problem saying to someone on the train, I'm sick can I please have your seat. I've given up my seat plenty of times so I figure now it's my turn.

It's weird how an IV seems more like you are actually healing yourself. Placebo effect. You want to see it going in your body so you can feel like you're truly helping yourself. Tomorrow I go to get full details so I guess pills it is!

Coppercent
Posts: 142
Joined: Jan 2012

Helen, I did the Xeloda pills with my radiation although I could have done the 5FU IV. The 5FU is IV and the Xeloda is pill form of the 5FU. The 5FU would have been carrying around a pump of chemo 24/7 Monday through Friday and for me that seemed too inconvenient if the Xeloda would work too. I took the Xeloda pills two times a day. They have to be taken within 30 minutes of a meal/food and the doses have to be 12 hours apart. So while I was doing radiation Monday through Friday, I started the Xeloda at 7:00pm on Sunday evening then took my last dose on Friday morning at 7:00am. I set my phone alarm to tell me to eat at 6:30pm and 6:30am so I could take my daily doses at 7:00pm and 7:00am. It was only for 6 weeks so anything is doable for that amount of time. I then had my radiation appointments at 4:00pm after work each day. I had to adjust my work schedule to go in early so I could get off early. I was extremely fortunate and had no side effects but I will say I was pretty anal about doing all of the preventative stuff! I went to the health food store and bought sugar free cranberry juice and drank that twice a day. I also bought tons of lemons and drank lemon juice through out the day. I was lax with my lemon juice about the 5th week and had issues with burning on urination. But as soon as I started drinking my lemon water again the burning stopped! I also used the Udder Cream on my hands and feet daily. I would lotion up my feet really well at night put on some socks so I did not have any of the hand/foot syndrome. I put Udder Cream on my hands at least 4 times a day. I was fortunate that I did not have any fatique or nausea through the 6 weeks of chemoradiation. But my oncologists believes on keeping life normal and continuing work. He also told me I needed to exercise at least an hour everyday and to eat a healthy diet. Not sure if I was lucky with not having side effects or if all of the preventative stuff worked. I can tell you I had only told my two bosses about my cancer diagnosis. No one else at work knew. Just didn't want cancer taking over my life. When I went out for surgery the rest of the staff had to be told. They were shocked that I had just went through 6 weeks of chemoradiation because they said they would never had known if they had not been told. After I had my surgery I did end up on 5FU. I would go in on a Wednesday, get IV fluids then they gave me a bolus of 5FU and I went home with the pump of 5FU and came back Friday to have the pump disconnected. It really wasn't that bad. You get used it it. Good luck with your radiologist appointment. You will learn a lot then and understand the whole process. I have an awesome oncologist and he said a normal routine, exercise, healthy eating and a positive attitude would get me through successfully.

deb824
Posts: 21
Joined: May 2012

Helen,
Bill took Xeloda while doing his radiation. His only side effect was being tired. Good luck!

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

Okay check list.. Sugar free cranberry juice. I hate cranberry juice but I'm sure that's for UTIs and those hurt like heck. I happen to work somewhere with a huge, hot meal selection as well as a sandwich and salad station, and you name it they got it drinks right down to fresh lemons cafeteria although they don't have much sugarfree. I've been eating oatmeal every day for over a month. Udder cream. I have never heard of Udder cream but I'll find it. I type for a living so my hands are very important and my ride home is 1-1/2 hours so my feet too. I'm great with being obsessive compulsive to avoid side effects. Last surgery I dutifully drank 64 ounces of water a day and ate what I was told. Went through the recovery pretty easily. I did cheat and do yard work. Caused unnecessary pain, I won't do that again, lesson learned. Thanks for the tips. I'm going to go in smiling like I always do and hopefully come out that way too. I even smiled before my last surgery and smiled maybe 5 hours after. Of course that smile could have been the morphine. Even fake smiles are supposed to make your body think you're okay. I read the smile theory years ago and I've used it ever since. I'm sure I'll look like a nut smiling at my appt. tomorrow. Exercise is harder. I'm already using my lunch hour to go to Sloan. If I feel well enough, maybe I can walk over. That's the only way I can see squeezing it in. Were you able to exercise with the chemo/rad?

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Look for a tin of Bag Balm - it is greasy but effective. Slather it on your feet especially...3x a day if you can.....morning / when you get in from work / when you go to bed. Put socks on afterwards to hold the moisture in. If you get started on it right from the start, you may be able to stave off some of the toxicity effects.

Xeloda is very hard on the feet....a little tender on the fingertips...I type too, but mostly feet....mine split wide open and I would peel husks off my heels and feet....so bad at one point I could barely wear shoes or stand up.....walking was very difficult.

My onc never told me what to expect - one of the reasons I stay on this board and try and help people like you - so you have a heads up and hopefully won't go through what I did.

I was reactive due to lack of disclosure....and it took a long time for my feet to stop peeling and cracking and start to heal back up.

CVS or Walgreens, and I think Walmart will carry this brand.....

Craig

omrhill
Posts: 125
Joined: May 2012

I'm happy to send you two barely used tins of bag balm. It works. Very well. But the scent doesn't sit well with me. And i'm not usually bothered with stuff like that at all. Someone says that Burts Bees makes a balm that works almost as well. Seriously - if you'd like me to mail them to you, send me a pm.

steved
Posts: 836
Joined: Apr 2004

Be cautious about deciding before that you will have side effects- it clearly increases the likelihood you will eg 'I will be a walking zombie', 'I am the side effect queen'. In truth there is little that you can do about preventing side effects- the only proven changable predictor of side effecs is mental attitude to tehm before treatment starts. Doing your best to plan not to get them and then dealing with them if they arise is a better starting position.
'Can you exercise on chemoradiotherapy'- ultimately you can do what you like. The fatigue I found wasn't helped by lying around resting too much and in fact could be 'pushed through' so I found going to the gym made me less tired and lying around at home 'being tired' made me more tired. It is very individual but a good positive mental attitude (which I do truly believe you have- like the smile theory, it truly does work) goes a long way in smoothing this rough journey.

steve

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I tried a whole variety of different things. Aloe lotions, Bag Balm, Udderly Smooth and many others but they would all sting and burn the cracks in my skin. Then when I went to Arizona and stopped to see the staff at my old cancer center someone recommended Aquaphor. This has no dyes, fragrances, alcohol or preservatives and I can use it on my skin no matter how raw it is. Because of the name, I'm guessing that it's a water based ointment rather than a petroleum based one. Since I've started using it, the cracks and splits on my hands and feet have started to heal a lot faster.

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

Gracias, I'm now also going to get oxyplatin starting Monday. MRI yesterday yielded bad results. It's progressing very fast and so we're going to fight back very hard. I'm going to pick up the Udder cream this weekend and I'll put it on right away. I'm so unbelievably confused by what is what. My understanding was radiation was the need for the cream, good to know I need it for the chemo also. Was told to pick up special gloves. I guess I have to stop wearing my flip flops, they are killer on the bottoms of the feet. I'll go get a new pair of sneakers since mine are a year and a half old. Anything else you can think of, please share. I'm going to try to stay ahead of this stuff so I can keep working to the best of my ability. Some wonderful people in my life. My coworker bought me a week on the LIRR (cushy train) to work, I've used that already. Now my other coworker bought me a week's trip on the subway. They are such loving people. I feel so lucky to have people who care about me in my life. They're even all offering to cover me at work and hide me from the supervisors.

Coppercent
Posts: 142
Joined: Jan 2012

The Udderly Smooth body cream works really well and the smell is not that bad. You get it at Wal Mart or the dollar store. In Wal Mart it is not by the other creams, it is near the pharmacy. You may have to ask for it. The container has the "cow spots" on it. I got my first tube when I went to the Xeloda training and I think it was provided by the drug company that makes Xeloda. I am on a computer all day and the thought of having issues with my fingers scared me a little but I have not had any problems. Though I think the Xeloda does something to your finger tips because I have an iPhone and it is not as sensitive to my touch as it used to be. I had thought it was my phone but I was using my son's one day and had the same issue. Weird I know but I have stopped questioning. I saw another patient that was on Xeloda and had not used the cream and his hands looked so sore. They were peeling like he had a sunburn and it started to peel. I hate cranberry juice so the non-sweet is even worse. I was like a small child and held my nose! I exercised through out all of my treatments. May have walked a little slower and not as long on some days though but I always got out and attempted it. The only time I did not get to exercise was when I got an infection and ended up in the hospital. Before I was admitted I could hardly walk to the bathroom. Good luck! I know you will do well.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Xeloada pills are convenient, no doubt
Pack an emergency kit to keep w/you to and from work.
I have a pair of cotton gloves to wear at night if my hands get cracked and peel. I. found. it tolerable and the week off the pills they would heal.
Aquaphor, Neutrogena, and Udder Cream are great but I think aquaphor ointment has healing properties.
If you can take walks or bike rides its so good for the soul!
I did have variable bowel movements that become regular and immodium helps.
Line up all the necessities and some good books and magazines too, for pampering yourself.

Helen321's picture
Helen321
Posts: 749
Joined: May 2012

Thanks, I will 100% pick up that cream this weekend. My fingers are my bread and butter! The good news in all of this is that the 4 months of chemo pushes my surgery back and my second surgery will fall in feb/march and my STD resets in March so now if the addition of oxyplatin makes me sick, I can take time off. Or if I have problems with the rad, I can stop working. Life works out, sometimes I forget that. You just have to let it. Good for you with the exercise. That's very impressive. I hope to have the same results.

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