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Started FOLFOX - Questions

TheLadySkye
Posts: 100
Joined: Oct 2013

After small bowel resection to remove the tumor, I began FOLFOX chemotherapy last week.  Even though I was diagnosed at Stage 2 and the surgeon was pleased with the surgery and lack of evidence of cancer in the lymph nodes and surrounding tissue, there were enough risk factors (including T4 tumor size, partial obstruction, moderately differentiated cells) for them to recommend adjuvent chemotherapy.  Right now, my biggest issues after my first treatment have been extreme tiredness, some nausea, and some pretty painful constipation.  Also kind of a strange shocking sensation in my jaw the first time I bite something and under my fingernails as my hands fully dry.

 

Are these normal things to experience during chemotherapy?  Should I expect them to get worse or will this remain about the same throughout treatment?  

 

What is the best thing I can do for the constipation?  I was given stuff for diarrhea, but not the opposite issue.  I'm drinking lots of water and some prune juice, but it's not really helping.

 

I know it's the million dollar question for everyone, but does anyone have any insight into recurrence?  That is my biggest fear throughout all of this, and it's something the doctors are not talking about in detail at this point since I'm being treated with "curative intent."  Which is awesome, but it's still something I'm terribly afraid of.  What if?

 

Any experiences you could share about this or FOLFOX would be very much appreciated.  Thank you!

lp1964's picture
lp1964
Posts: 902
Joined: Jun 2013

You have the typical side effects of Folfox. Try to ménage the constipation with diet if doesn't work ask your doctor. Don't go more than 3 days without stool. The jolt in the jaw is common. The fingertip sensitivity also, avoid touching clod things with your bare hands. This may happen in your throat too, so avoid cold drinks.

One part of the folfox will dry your hands and feet out line crazy. You need to moisterize 3-4 a day. I like Bio-oil from constco, but try other things too.

Recurrance? It's out of our hands. We can only hope. But sounds like you have a good chance by being Stage 2. Follow good diet, healthy life style, positive attitude and follow your doctors instructions.

I wish you all the best,

Laz

janderson1964's picture
janderson1964
Posts: 1784
Joined: Oct 2011

All of the side effects you are experiencing are normal.  I have experienced the same ones.

Your odds of recurring are pretty low since you are stage II. Eat and drink everything at room temperature.  Wear gloves when you have to take something out of the refrigerator. 

Trubrit's picture
Trubrit
Posts: 1633
Joined: Jan 2013

We're sorry you had to join us, but now that you're here, we're happy to help you in any way we can.

You will find a ton of wonderful advice to help you on your journey.

As my friends in the posts above said, the jaw shock and fingertip sensation are both normal. For me, they disappeared after the fourth of fifth treatment, sadly to be replaced by something else. 

We all experience different side effects though. 

I too had constipation. For me, Shredded Wheat was my biggest friend, and still are, and Carrots too. I found constipation to be terribly scary (still do) because that is how I found out I had coloerctal cancer. 

Drinking water is a positive, I'm glad you are doing that.

I think you will find out what works best for your body if you experiment with different foods. 

I kept a daily record of everything I went through during treatment. My vitals (weight, blood pressure, temperature), my bowel movements (frequency, consistency), pretty much anything my body did I wrote down, and if I had questions about certain things then I'd ask my Oncologist. Nothing was out of bounds, no matter how small or insignificant it seemed. 

Again, its been mentioned above, moisterize hands and feet regularly, as the foot and hand syndrome can be very uncomfortable. 

Another thing you may want to do, is rinse your mouth out about four times a day (twice at the least) with a mixture of warm water mixed with baking soda and salt. Its a godsend when those mouth ulcers start raising their ugly heads. And if you don't get mouth ulcers, well, you've lost nothing.  I used 1 cup warm water, 1/4 teaspoon baking soda and 1/8 teaspoon salt.

Reoccurance is a huge weight on my mind (I'm stage 3B), but its something I need to live with, and as Laz said, pretty much out of our hands if it happens or not. I plan on enjoying the time I have, though I'd be lying if I said that it doesn't worry me. I just don't let it consume me. 

Be sure and visit us often. You're amongst the finest of people. 

Good luck!

 

thxmiker's picture
thxmiker
Posts: 1255
Joined: Oct 2010

We are sending our thoughts and prayers for a positive outcome!  

 

Folfox is a dificult treatment.  You will do well.  Keep a positive out look, and understand this is for a short time in life.

 

Get a set of Ove Gloves.  They are thermal gloves to help you get things in and out of the oven.  They will be needed to retreive things in and out of the refrigerator and freezer. Else, you will feel like your hands are burning.

 

Baby Wipes and Nupercanal will be neccesities in the bathroom.  They are to ease the pain of the diarrhea. Also to protect the soft tissue damage fro the acidity. 

 

Eat often little meals.  This will be necessary due to the trips to the bathroom.   I learned to bake because I was eating all of the time.  lol   My friends and neighbors got tired of me handing them cakes and cookies all of the time. 

 

Ginger, bananas and gator aid helped me through tthe difficult times.  They refueled my body when I was depeleted. 

 

Get out and exercise.  Even when I felt depeleted, I always felt better after a walk.  I usually got 2 miles or more in, but just going aroind the block made me feel better.

 

Best Always, mike

Annabelle41415's picture
Annabelle41415
Posts: 4361
Joined: Feb 2009

Just wanted to wish you a welcome but sorry you had to join us.  All the symptoms that you have experienced are normal.  You will find a lot of knowledge here and people will help you get through this.  The chemo is nasty but if it can get out those pesky left over cells you will go through that just to get rid of it.  I'm wishing you the best going forward and come here with any questions.  As far as constipation the doctor can help with something or maybe even something OTC.  Hope you feel better soon.

Kim

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

That jaw pain - they don't warn you about it, but it is blinding!  I always started my meals with a pea-sized bite of something tiny to get past it.

I, too, was constipated and never had the diarrhea.  I started on Senna and Colace the day before each chemo treatment to help with that.  You don't want to be put in a position of having to strain.  Your skin is more tender, and I developed an anal fissure that was blindingly painful.  Talk to your dr and see about keeping Senna and Colace in your arsenal, and using it pre-emptively.  I waited until the 3rd treatment to do that, and suffered for it.  (Yes, I kept Lomotil handy at all times, but I never needed it.)

Hands - I started using plastic flatware at meals.  The metal silverware was too painful.

The joys of FolFox.  Just know that these are standard.  Keep asking questions; we'll help you through it.

Alice

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

Lots of good advice here, so not much to add, except for this:

it's totally normal to fear recurrence, whatever stage you might be.  But I think that with the passage of time, you will find that this fear gradually moves to the back of the mind.  It may never go away fully, but the longer you stay healthy (and as a stage 2, it's very likely you will stay healthy!), the less you will have this fear.

This is just imo, of course, everyone is different.  But I've found that, for me, now 2 years out from my last surgery (after multiple recurrences), the constant fear and worry is finally muted.  Not gone, but a lot less overwhelming than it once was.

Cancer is serious, life-changing stuff.  You are going to have strong emotions around it, including fear.  I don't think there's any way to avoid that in the short-term.  But in the long-term, things will get better!

Hugs and strength coming your way~AA

PS On a more practical note, when the fear got to be too much for me, I would walk, watch distracting (=stupid) TV, find a good book to read, talk to a counselor, take an anti-anxiety med (these can really be a great tool, esp in the early, adjustment stages of this journey)...you can find what works for you!

TheLadySkye
Posts: 100
Joined: Oct 2013

Thank you all for sharing your experiences.  I had my first post-chemo doc visit today and had a bit of scariness when some swelling in my leg resulted in some rather panicked tests about a possible blood clot.  Thankfully that came back negative, although they still don't know what's causing it.  The doppler showed no clots or pockets of fluid, but a good bit of soft tissue swelling.  Doc doesn't think it's the steroid or any of the meds in particular, so it remains a mystery that will hopefully resolve on it's own in short order.  

 

Second treatment on Monday.  Scary stuff :(

Nana b's picture
Nana b
Posts: 3020
Joined: May 2009

Watch the pain pills. They constipated you.  Keep child suppositories handy. I got the WORST constipation.   Hurt so bad.  Insert them and rest about 10 minutes. They should have you going.  Used mirilax or Decolax.    Food will start to taste horrible. I had to eat bland food.  Like a quesadilla of fried potatoes in a little oil and made a flour tortilla burrito. That was all I could eat. I did juice my veggIes.  Warm temp lemonaide and chamollie tea were my drinks. No Ice! 

 

I wish you the best.   In a hurry now but feel free to instant message me with any questions. 

Big hug. 

 

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