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First Folfox treatment

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Had my first Folfox treatment yesterday.  So far so good.  Get the pack off tomorrow at noon.  I slept pretty good considering the steroids in there.  Did experience that weird jaw sensation when biting the first time.  Thanks to the forum, I knew that was normal and didn't freak out.  Cold drinks are a no no so nipped that pretty quick.  I heard the symptoms usually start after the pack comes off so praying for minimal effects. Thanks to everyone for all the tips/suggestions.  May the force be with me!!  Kiss

 

Cyn

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

I've been waiting to hear from you, even though I knew your day would go well. Half of the battle is attitude, and you seem to have that in spades.

As you know, I too had my chemo yesterday and my take-away chemo will be unhooked around noon on Friday too. 

I swear, we're on the same track.  What time zone are you in? I'm Pacific. 

What were you staged as? 

Don't think too much about what other side effects you may experience. Enjoy the now, and face them when they get there. 

Have a great day. And DON'T forget to pick up your bag when you get up. I've dragged mine to the floor a few times. 

 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I forgot we're on the same schedule.  Yeah for us!  I'm in Central time zone.  Staged at 3B. 

I was freaking out sleeping with that fanny pack so I just kept it hooked to me all night long.  It wasn't a problem since I was able to sleep on my left side.  Can't wait to get it off on Friday so I can take a shower!  Sponge baths are icky.  Have a great day!!

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

And don't forget to stay hydrated...that's the one mistake a lot of us made in the beginning, and it often ends in a trip to the ER.  And speaking of that, I learned that if you do get dehydrated, you can usually go into your infusion center and get IV fluids.  I didn't know that, waited too long, and landed in ER.  Not fun.  Much better to go in early if you feel like you're having trouble getting enough fluids.  Hugs~AA

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Ana,

I'm a big water drink anyway so have been chugging that down.  Don't want to get dehydrated.  I ended up buying a Brita water bottle and have been filling it with lukewarm tap water so that's helping a lot.

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

nor any drop to drink. (The Rhyme of the Ancient Mariner. Samule Taylor Coleridge)

I pop my filtered water in the microwave for 30 seconds. Perfect!

I also drink hot milk, hot apple juice with mulled spices, hot Cranberry juice with Allspice berried and cinnamon.  

I find that having a selection of different hot drinks to choose from helps me keep my fluids up.

 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Good idea about the hots drinks.  I love Sleepytime tea at night.

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Hey! This is to all of you, I'm still trying to learn my way around the site, but I just wanted to chime in on the water topic....You all probably already know (I didn't, as I don't know A LOT of things, still learning) that "Alkaline Water" is suppose to be the best thing to drink. I had never even heard of it, but I've been reading "The PH Miracle" by Robert O. Young, & it talks about how important having the right PH amount in the water you drink is. It recommends having a PH of 9.5. I found some jugs of water at Kroger, it's called "Hydrate" (how appropriate Laughing),it has a high PH of 9+, it says it hydrates 6 times faster, says it's "Alkaline Ionized Water", it acts as an effective antioxidant, reduces acid buildup in the body, & increases the body's alkalinity. A friend of mine told me about the PH Miracle book & it really is amazing. I'm not gonna try to push it on anyone, obviously you can use your own judgement, but "I" feel that it's something worth looking into. Anyway, I just wanted to share the thing about the water. Hope this helps. Kris

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Any idea how to find it in Maine?

Judy

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

No, I don't....I just happened to run across it at the grocery store. I'd say they sell it at the health food stores though. You can also buy PH Drops to add to your water to make it have the right amount of PH. I've only seen those online, but again I bet the health food stores sell them. I'm gonna be checking around here to see if I can find the drops, because the gallon of water I bought was almost $4.00. (can't afford that!) Good luck & please let me know if you find it! Kris

coloCan
Posts: 1845
Joined: Oct 2009

not ,as each response is unique to each of us). If you can,try to do some exercise or activity and not just watch tv or internet(which i was ignorant of during my own tx)I tried to avoid people under assumption that my immune system was declining and didn't want to catch nothing from others. make sure you have emergency contact number to call if necessary at any time and learn what controls on pump do and how to discontent....when drinking,nothing cold, i would try to aim liquid down middle of mouth to avoid touching sides that caused strange feelings

wts's picture
wts
Posts: 36
Joined: Jun 2012

I'm on the same schedule. I get unhooked tomorrow at 2:30. I get some other meds today and my pump refilled. I'm on treatment 5.  The drinking enough is what I have issues with. I always drink cold stuff but not now! Ussually I can drink cold drinks again around the Wed-Fri after I'm unhooked. I just get really tired the Friday I get unhooked and am tired over the weekend.

wts's picture
wts
Posts: 36
Joined: Jun 2012

I'm on the same schedule. I get unhooked tomorrow at 2:30. I get some other meds today and my pump refilled. I'm on treatment 5.  The drinking enough is what I have issues with. I always drink cold stuff but not now! Ussually I can drink cold drinks again around the Wed-Fri after I'm unhooked. I just get really tired the Friday I get unhooked and am tired over the weekend.

maglets's picture
maglets
Posts: 2403
Joined: Jun 2006

there you go!!!! you did it....proud of you.  I think in some ways that first one is so bad just because you are nervous and do not know what to expect.  Symptoms may get worse and may not but you have numero uno down and behind you.  Sometimes on chemo the taste of water will start to not appeal....then you get to be creative with all sorts of room temp things to drink...like adding a little lemon or lime or soda.  Some people have found ginger ale and some others have like orange soda....but AA is right....the nurses always told me that the patients who stay hydrated do way better.....

all the very best and a big hug.....mags

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Thanks Mags.  I heard the water taste could get worse later.  We've got lots of juices and gatorade so I'll probably hit those later.  Got to remember to keep them out of the fridge though.  One down, 11 more to go! 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

There are a bunch of us on the same schedule!  Have you noticed you always get tired on the Friday they unhook it or just the later treatments?  I hate not being able to drink cold drinks.  I'm going to miss my Coke iccee's!! 

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

My first treatment I didn't get tired intil the Saturday. The second, I got tired on the Thrusday so I was expecting that today, but instead I am full of energy. 

Variety is the spice of life, so play around with hot drinks that take you fancy. As you can see by my post above, I love to use spices in my juices. I've pulled out my Christmas Wassail recipes.

The heartburn is definitely the worst side effect for me. Metal mouth and fuzzy tongue isn't nice, but oh, how I could live without the heartburn, especially at night. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I have definitely experienced the fuzzy tongue.  Does that hang around forever?  I'd rather have heartburn than the nausea though.  Hope I don't get either.  At the clinic, the nurse said there is one lady on Folfox and has had like 10 treatments and not one single symptom.  I want to be her!  lol

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

My tongue clears up about five or six days after treatment so far. What happens as the treatments progress reamains to be seen. 

I take my vitals and look at my tongue every day. I also keep a notebook, jot down what I'm experiencing.  I've been keeping a video diary too (love my Apple), good days and bad. 

I want to be that lady your nurse told you about. I wonder what her secret is. 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Congrats on your first treatment.  I just did number 15 yesterday, and also get my pump off tomorrow.  That makes 4 of us on the same schedule...  I didn't notice any worse side affects after my first treatment, with the exception of neuropathy setting in around tx #8 or 9.  In fact, I am at work now and have worked every Thursday and Friday after chemo since tx#1, and many days come in Wednesday after getting chemo.  IMHO, the keys are to stay active, stay hydrated, and eat as well as possible.  Also, if you feel the least bit nauseous, take a compazine ASAP.  Don't wait until you are actually getting sick.

Tedd

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Tedd,

I plan on going back to work Feb. 25th which is six weeks after my surgery.  I'm hoping I'll just miss work the day I get the chemo.  Friday when I get the pack off, hopefully I'll have Sat. and Sunday to recoop.  Where I work is very understanding if I miss so that's okay.  I'm ready to go back and start being a little more active.  It's a desk job but just to get out of the house will help I'm sure. 

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Yay for you!!!!! Now the "what to expect" feeling is over, and you can get rid of that anxiety for the next visit.

I too was dx Stage 3 rectal, and that was in Spring 2009. I am currently NED (no evidence of disease) so I can say that it was all worth it.

I hope the whole process is as easy on you as it can be. Keep in mind that some days may feel like one step forward, two steps back, but in the end, you are making progress :)

Your Friend in California~

Tommycat

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Tommycat,

Thank you.  So happy for you that you're NED!!  Kiss

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Get in the habit now of rinsing yourmouth frequently with warm water into which you've added about a tsp of equal parts salt/baking soda.  This will help to avoid mouth sores.  I did that at least 4 times a day, both during and between chemo cycles.  Mouth sores are no fun.

I also found using plastic utensils or wooden chopsticks were easier on my cold-sensitive hands than metal flatware.

For the "First Bite" syndrome, I'd take a pea-sized bit of bread or tapioca - just something to get past the pain (which was equally bad no matter how large a bite of food.)  It's easier to spit out, if need be (if the pain is too severe, which mine was.)

Good luck!  You'll do fine with this, tho it's no fun.  We'll all be cheering you on.

 

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

Just anted to second the suggestion to keep a diary.  It really helped me (bad memory).  I kept track of the food I ate, (what worked, what didn't), my mood, sleep patterns, etc.  It helped me to remember what worked during each two week cycle. 

Best, Vita

swordranch's picture
swordranch
Posts: 35
Joined: Feb 2013

Hi all, I am new to the site so if I am not following etiquette please let me know.  I was diagnosed March 1 2012, rectal.  Lymph node involvement.  7 week pre surgery chemo/radiation.  Big, bad surgery in July.  Petscan showed lymph nodes were clear at the time so they only took out part of them...petscan wrong 100% removed were still involved when the path came back so they assume what was left was also still involved.  The surgeon found pelvic wall involvement as well that had grown while I was having the first round of chemo/rad.  So not a very good prognosis.  Started chemo again in August, 12 treatments, down to one left.  Handled pretty well (some tiredness, some narly pain for a few days each time) until the last month, neuropathy exploded, hands and feet, much more tired, much more pain etc.   Ready to be done!!! Last treatment scheduled the 26th through the 28th of this month.  CT March 11th, results the 15th...wish me luck!  My infusions are 200 miles away, my surgeon 400 miles away, so done a bit of traveling in the last year.  Husband is also dealing with stage 4 prostate cancer diagnosed at 55. The same age that I was diagnosed... Bummer.  Looking for people that have had radical APR, permanent colostomy that nothing fits, very sunken and retracted, as well as  herniated.

I remain positive!!! and confident!!!

Laura

 

janie1
Posts: 753
Joined: Apr 2011

I see that you have specific questions about APR and colostomy.
Please don't hesitate to start a new topic so that you get answers to your questions. There are very experienced people here that can help. Just put in your topic line something to draw their attention to, like "questions on APR and colostomy".
Not everyone here has those, so you want to catch the attention of those who do, so that they can jump in and help you.
You are very far away from your doctors so you will benefit from an internet forum like this.

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

I am so sorry to hear that both you and your husband are suffereing this journey. That has to be so hard. 

"Ready to be done" Oh, I hear you, but i'm only on treatment #3.

I also have to travel 300 miles round trip. All of my Doctor's are in the big city. I'm so glad that I am on a two week schedule (until the raditation).

Good luck.

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

I'm glad it's going we'll for you.  I was one of the lucky ones too, just the cold and jaw pain, and oh, in case you get them sometimes a twitching of an eye, or cramping of hands or legs, not a painful cramping, but they would sometimes draw in (my hands) and my legs would not quite behave right but it does go away after a few minutes.

may the force remain strong in you, LOL.

Winter Marie

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I love your attitude and happy, smiling face! Glad Folfox is going well for you so far. My daughter said it was like her teeth and mouth were "wearing sweaters." She wore gloves all the time, even in the house. Best wishes!

Sandy

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