Newbie...just started Folfox

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JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Wed Mar 08, 2017 4:40 am

Another big "Thank you!" to everyone who has taken time to respond to my post!

A few people have asked about my treatment. I am on 12 cycles of Folfox over 6 months, so each fortnight. I go to the hospital on day 1 for the following infusions:
Day 1
Pre-meds of of Solumedrol (120gm), then Kytril (120gm)
Oxaliplatine (85 mg/m3)
Levofolinate de Calcium (100mg/m3) (These 2 meds go in together over 2 hours)
Fluoro-uracile (400mg/m3) (5FU) for 10 minutes
Then the pump is connected and I get 600 mg/m3 5FU this way through over 22 hours at home.

Day 2
Levofolinate de Calcium (100mg/m3)
5FU (400mg/m2)
both in together over 2 hours
Then pump again with 600mg/m3 over the next 22 hours at home

The local nurse comes to disconnect the pump around midday on Day 3.

Today I am in 8 days since my last chemo and feeling quite good really! My positivity is back, I am doing everything that I was doing before the chemo and the neuropathy is now tolerable outside with good gloves. I'm making the most of this good week and trying to plan better for next week...more dishes prepared and in the freezer...making a prawn curry, some pasties and a quiche today! Tomorrow going to our dance group..extra exercise and seeing friends, both great for morale! It feels sooo good to be well again!

Judi xxx

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Sat Mar 11, 2017 7:45 am

Back again as my second Folfox approaches... It's been a good week but thinking about Monday is spoiling the weekend. This week I have been dancing and been walking with friends and pretty much done my "normal" stuff but am niw dreading a repeat of last session.
I suppose being on here is probably not a good idea but it feels like a safe haven as you've all been where​ I find myself... Ok I say to myself ." smile and do something to distract yourself"!

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ANDRETEXAS
Posts: 527
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Newbie...just started Folfox

Postby ANDRETEXAS » Sat Mar 11, 2017 12:40 pm

Two things you should do....stay positive and try to exercise (walking, running, etc) every day. You may get more tired as the weeks go on, but try to keep active. My oncologist thinks exercise is one of the important things to do while on chemo and afterward....
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT

ONE DAY AT A TIME !

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horizon
Posts: 1343
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Re: Newbie...just started Folfox

Postby horizon » Sat Mar 11, 2017 3:54 pm

JudiB wrote:Back again as my second Folfox approaches... It's been a good week but thinking about Monday is spoiling the weekend. This week I have been dancing and been walking with friends and pretty much done my "normal" stuff but am niw dreading a repeat of last session.
I suppose being on here is probably not a good idea but it feels like a safe haven as you've all been where​ I find myself... Ok I say to myself ." smile and do something to distract yourself"!


I remember that feeling well. That week before an infusion I had no pills or anything else to do. Just as I was starting to feel really normal again it was time for another infusion. I took the mindset of enduring it for the best chances of killing the monster I was dealing with.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 5 years NED). Is this real life?

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Mon Mar 13, 2017 8:03 am

Had day 1 of second Folfox today and pump us going now till​ tomorrows session. The nurse said that I can take both the Emend (day 2 dose) plus start the Prednisolone at the same time in the morning. I can also begin the Primperan this evening so... everything is crossed that this week goes better than the one after my last treatment! The nurse also said that there is another med they can give me if the sickness breaks through.
It all felt better going today so..we'll see what tomorrow brings!
Going out foe a good walk this afternoon... The sun is shinning so it's a good day ..even with this horrible stuff pumping round my body!

Thank you again to everyone who responded and I hope you too are enjoying today! Xxxx

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LPL
Posts: 129
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newbie...just started Folfox

Postby LPL » Mon Mar 13, 2017 3:42 pm

Hi Judi,

Sounds like you are getting good advice and additional help/alternatives to make you feel OK this 2nd time :)
My hubby reacted really bad to the steroids (as I mentioned before) and that made it impossible for him to exercise (very tired and had to be close to a bathroom) but when the hyperglycemia was taken care of, he could start to excercise and I'm sure the exercise, daily walks with our dog, helped my hubby get through the chemo without too much problems. (He did get peripheral neuropathy though and they stopped the 'Oxi' for his last 3 chemos.) Many have mentioned the importance of exercise, as a good 'antidote' while on chemo and also after. I do believe that is true!

Hubby had no problem with apetite/nausia when on chemo but If You should experience 'no apetite' - and in need of protein so not to lose muscles - I can share that I was advised by a pharmacy in Bordeaux (where my hubby is treated) that many Doctors there obviosly recommend a product called " Nutricia Fortimel" after surgeries. http://www.nutricia.fr/nos-produits/nut ... ein-200ml/ It was for sure Not my husband's favorit food... (some variants did go down better then others though) - but he did add this extra protein while he was healing from surgeries, he knew it was important.

Thinking of You and hoping #2 will be easy for you !
Kind regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

TXLiz
Posts: 109
Joined: Thu Sep 22, 2016 3:31 pm

Re: Newbie...just started Folfox

Postby TXLiz » Mon Mar 13, 2017 4:50 pm

I know it is awful. It super sucks.

Try not to think about the whole 6 months at once. Try to take it a treatment at a time.

We just moved to our first home, have land for our little farm, husband retired from military after almost 30 years. It's so frustrating life goes on around you and you are in the valley fighting.

My best wishes to you. It's a fight for sure. When you are low, think of all of us rooting for you, and going through the same thing. You may feel alone, but surely are not.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1

justin case
Posts: 4104
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Newbie...just started Folfox

Postby justin case » Mon Mar 13, 2017 5:38 pm

Lee wrote:Are you on the pump or the pills?

For me, I was on the pump and here are a few things that helped me.

Drink tons of water a day or two prior to infusion. Dehydration could bring on a hold of other problems including nausea.

On way to infusion, I always ate an egg cheese breakfast sandwich. Figured the eggs gave me protein and bread gave me carbs. While on chemo, eat small meals several times a day vs 3 meals a day. Eat what sound/feels good. Even if that means junk food. For me, food in stomach kept nausea at bay. So don't worry about eating healthy while on chemo. Sometimes supplement your diet with Ensure or something like that can help with vitamins and minerals.

The one thing I really want to stress, again eat and drink ONLY what sounds or feels good. If you force (gag) something down, you could risk the chance of getting an inversion to that food or water. I am so grateful to my chemo nurse. She noticed I was gagging water down. Told me to stop drinking water, PERIOD, until after I finished my chemo treatment. Drink soda, OJ, whatever sounds good. Today I can drink water (love it) without issues.

One I ate a Boca burger. Was sick of it when i finished it, will never eat one again.

Food will taste metallic after awhile, know that is normal.

Tell your Dr of your reaction.

Make sure the Onc is giving you med PRIOR to infusion to help control the nausea. There is also some pill that some people take prior to infusion that helps with nausea. Not sure of name. Dr should know.

Ginger is suppose to be good to control nausea. Ginger snap cookies, Ginger Ale, Ginger root, etc.

Hope this helps some, there is nothing worse than nausea.

Lee

I ate before infusions, and drank coffee... it's not cold !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Tue Mar 14, 2017 1:28 pm

More thanks for your ideas and support.
Today, day 2 better with meds holding off the sickness .. just! Trying to eat as think it will help. Can't wait to get rid of the pump tomorrow.
As suggested, I tried ginger last time ....always helped before but not anymore for sone reason. Think the sea bands are helping though Plan to keep them on until sure the nausea is no longer lurking in the background!
Will see how it goes tonight and tomorrow.
Judi xx

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LPL
Posts: 129
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newbie...just started Folfox

Postby LPL » Tue Mar 14, 2017 4:18 pm

Hi Judi,

Sounds good, like you are coping :)
You said before " The local nurse comes to disconnect the pump"
That is a good moment - Yes? Soon it is tomorrow..
And I believe it is not in every country that the nurse comes to our home and does that :wink:
All the best to you /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Lee
Posts: 4560
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newbie...just started Folfox

Postby Lee » Tue Mar 14, 2017 8:33 pm

justin case wrote:I ate before infusions, and drank coffee... it's not cold !


My bro nut, I drank coffee too. No problems, it was the OJ that had me throwing up in the bathroom during infusion. Maybe because it was cold :D . Would not touch the stuff again for a long time.

Judi, find a way to stay ahead of the nausea.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Wed Mar 15, 2017 4:01 am

Thanks everyone! Just holding back the​ nausea, waiting for nurse to come . Just 1 more hour before I say "goodbye!" to this horrible pump!
Still managing to feed the alpacas and clear poo from the paddocks... It's so good for the soul to be around the alpacas but had to come in early as feel the nausea lurking!
Soon be free again....till next time!
Xxx :D :D

jens22
Posts: 984
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Newbie...just started Folfox

Postby jens22 » Wed Mar 15, 2017 5:13 pm

Let your chemo nurses and doctor know that you were very nauseasted. They can order you pre chemo meds and Give you something that you can use if you get nauseasted at home. Not being bale to take fluids makes chemo very scary and dangerous....Those drugs are avaiable for a reason. Also I found that Ginger candy helped.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans.....5 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 52 Mom of 3 boys.

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Fri Mar 17, 2017 2:15 am

Awoke today and nausea has passed....it feels soooo good! I hate moping around feeling sick and trying to do some normal stuff but beaten back by fatigue and nausea. The neuropathy has been worse this time and even with 2 pairs of gloves and a warm day, it cuts through!
It's my birthday next week which is great as I should feel good! Hope to dance this weekend and maybe a walk, plus some overdue halter training ce, on a young alpaca so....some days of normality coming up!
Two Folfox down.....not counting how many still to follow though.... That's just too scary to think about until I get some more under ny belt!
I hope other folks on here are going to have a good day too..... Sending you all lots of hugs abd positive thoughts.
Xxxx

JudiB
Posts: 21
Joined: Sun Mar 05, 2017 5:30 am

Re: Newbie...just started Folfox

Postby JudiB » Fri Mar 17, 2017 5:18 am

Just had a horrible scare. I had been outside and when I came in my chin suddenly seemed to seize and the muscles made the skin wrinkle up very tightly. My tongue also went funny making it hard to speak. I rubbedmy chin and it has eased off but I still have a tightness across my chin. My chin felt cold. I have noticed a few times that my tongue doesn't seem right when I talk, sort of feels bigger and gets in the way. Has anyone else had this happen, is it "normal" stuff with Folfox?


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