CSN Login
Members Online: 8

You are here

Folfox7 2 down 10 to go

Tom M.
Posts: 36
Joined: May 2019

So far I have been blessed I guess. I get tired at the clinic during my treatment and a little tired for the 2days with my bag buddy. Other than that the only side effect I get is the prickly feeling on fingertips and throth. Blood counts remain good. All in all I feel pretty good. I am attacking this all with a very positive attitude. Faith, hope, and trust. I will update after each treatment. 

myAZmountain
Posts: 256
Joined: Apr 2018

Hope you can continue not having a lot of side effects--FOLFOX is cumalitive though so if you do start with neuropathy make sure you squawk loudly so they can either reduce the dose or discontinue treatments--it is supposedly still effective at lower dose and shorter duration--I have been told by 2 different oncologists their protocol is 8 treatments for Folfox but you will hear many differing opinions--best of luck during your chemo!!

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

It is good to look at this treatment with a positive attitude. I made it trough all 12 treatments of my Folfox5FU treatments over a 6 month period. You want to make sure that you keep track (diary helps) of how you are feeling during the treatment and the days in between treatments, as the effects are definitely cumulative. It is so important to communicate with your oncology doctor and nurse about how you felt in between treatments. I had the oxy reduced for treatments 10 and 11 and eliminated it for #12.

Make sure that you eat the best food that you can, even though you won't feel like it and everything tastes like aluminum foil. What I found was by eating very healthy meals (work with colors), as the chemo wore off in my system, my body was positioned to rebound by rebuilding the healthy cells (Red/White etc...).

I know that it is different for everybody, but it worked for me. I have been clean 17 months now!

Stay positive!

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

You've got a great attitude and that always helps going forward.  That's the way to come at the treatments as counting down.  It was a big help to me and had a big calendar on my wall and would mark off each one and then mark how many left and it seems good looking back to see that a certain amount was crossed off.  Hope that you continue to do well and please keep us informed as to how you are doing and if you need any advice going forward.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I hope it continues like that. It's rare but not impossible. Good luck!!

Jan

Tom M.
Posts: 36
Joined: May 2019

Completed #4 on folfox7. So far so good. Side effects are mild. I get tired at the clinic and after they remove my 2 day bag buddy. Neuropathy is slight as long as I remember no to drink anything cold. Seems to improve greatly during my full off week. Blood work always comes back great. Cea is down to 3.7 from 9.8 a month ago. I remain very positive through all this. Over all I feel pretty good. I keep people laughing when I go for my treatment day. Keeping the faith. We are not in this alone. Not only do I pray for a positive outcome, I pray for all of you as well. God bless.

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

It really is good to hear from you, and know that, on the whole, you are doing well with treatment.  REALLY happy to see the CEA # going down. Such a good sign. 

Keep on keeping on.  You'll be celebrating your last chemo before you know it. 

Tru

Steelkiwi686's picture
Steelkiwi686
Posts: 44
Joined: May 2019

Not to hijack the tread but I’m wondering whether there is a certain CEA number that represents “Good” or if when looking at CEA numbers the important thing is that’s it’s going down or staying stable ???

I’m positive the dr explained this to me way back ....when I sat in a daze at those early meetings and I keep forgetting to ask him in our recent visits due to other questions....and frankly it didn’t feel like a priority to me before and I now begin to understand its potential importance based on the threads in this group.

Thank you 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Keep the countdown going.  I'm glad that the side effects are bearable and you seem to be tolerable the treatments well.  Thanks for the update.

Kim

Tom M.
Posts: 36
Joined: May 2019

Reached the half way mark. Only 6 treatments to go. Handling all of it very well. Side effects very mild. I miss ice cold drinks. Oh well, I have to give to get. Blood counts remaining very good. Cea  continues to drop, it was 2.6 this time. Onc seems pleased. Keeping everything as is. I'm in this to win. I fully intend to be a long term survivor. God bless you my friends.

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

I love your attitude,I have the same. Yes,we are in it to win it Smile!

Wish you all the best,

Suzy

Tom M.
Posts: 36
Joined: May 2019

Thank you Suzy. 

myAZmountain
Posts: 256
Joined: Apr 2018

So glad to hear you are tolerating the dreaded FOLFOX well--do you have a scan scheduled now? Congrats on the CEA number too! Hope the next rounds are easy on you--and don't forget you can ask for dosage to be reduced if things get rough. Prayers and hugs!

Tom M.
Posts: 36
Joined: May 2019

No scan lined up as of yet. I do what they say and what I can. The infusion clinic nurses are my angles. I feel very confident about the whole process. I have from day one.

Steelkiwi686's picture
Steelkiwi686
Posts: 44
Joined: May 2019

So glad to see you’re doing well. I am enjoying seeing how you are making out.

Go You! :)

I have now been on Folfox for about a year with treatment every two weeks. I'm still going strong although disappointed I unexpectedly did not get to finish at 6 mos.  I’m mostly over that now and keep a mind set of just managing like chronic disease as JanJan says. It has helped my mind set to see things that way.  As long as the chemo is working for me, which it presently is then I am at this moment happily ready to just keep marching and doing what I’m told by my oncologist and team.

Couldn’t agree more with the nurses as angels comparison.  I absolutely love the nurses and have so much respect for their professionalism.  That thought was sealed when i had an allergic reaction and couldn’t breathe and they jumped-in and the incident was over soon. It may have been routine for them but not for me!

Anyway I feel you will be ringing that bell soon and I hope we get a picture of you smiling as you do it. 

Wishing you the best. 

Tom M.
Posts: 36
Joined: May 2019

I'm always happy and grateful to read all the positive comments on this site. We all have a special bond to one another. I pray for a good out come for all of us. All of my new friends here are in my thoughts and prayers. I cannot tell you all enough how much you mean to me. We really don't have a cancer support group where I live. This is it for me. My family and you are it. These last 2 years for us have sent us many changes in our life. God bless you all.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Half-way already is great.  It just seems like you posted this initial post a couple weeks ago.  Glad that things are going well.  So glad that we are able to lift your spirits and give you some encouragement.  There was no support group by me either so this was it.  This group helped me so much with my fears, questions and concerns.  It's hard to ask people that haven't gone through it to try and understand how you are feeling so that's why it's great that we have such a wonderful group.  God Bless you too and hope your treatment continues to go well.

Kim

Tom M.
Posts: 36
Joined: May 2019

Thanks Kim. You and Tru were my first friends here. Everyone here always has great words of encouragement. On my treatment days I keep the nurses laughing.  I have no intention of this bump in the road of my life getting to me. Just over a year ago we lost one of our sons in a accident. That being said it kinda put things into perspective for me. I have no fear of what I am going through now. We have 10 other children and I will deal with all of this by leading by example. I will keep all of you posted as the treatments continue.   God bless you all.

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

It hurts my heart to hear that you have lost a child to an accident.  

I fear the pain of losing a child is one of the hardest things to deal with. 

Bless you! 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

So sorry for your loss.  You have been through so much and losing a child has to be devestating.  This board is always in my prayers.  Prayers along with this board helped me.  Keep up the great work getting through this. 

Kim

Tom M.
Posts: 36
Joined: May 2019

Thank you for your kind word's Tru and Kim. We deal day to day with it all. Some better than others. Treatment 7 is this week. I will post the update. Take care my friends.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Just wondered how your neuropathy is feeling.  Going on 7 treatment round you are doing amazing.  Remember, if something doesn't feel right, let your doctor know.  Keep up the awesome strength you show on this board and during treatment.  You will be finished before you know it.  Good luck in #7 this week.

Kim

ellend
Posts: 83
Joined: Apr 2016

I'm glad to hear things are going well and hope it continues.

I had 8 rounds of Folfox back in 2016 - mop up chemo. I have some minor lingering neuropathy in my feet, but it isn't that bad, just a bit tingly. It is annoying when it is cold. I got very fatigued near the end of the treatments and they had to discontinue one component because my red blood count and platelets were getting very low. However, I didn't really have any serious issues. I hope that will be true for you as well.

Ellen

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

Keep on keeping on, Tom! Glad to hear you are so positive. That’s half the battle! Here’s hoping you continue to do so well. 

Im so sorry for your loss. Sending love and strength to you and your family.

k

Tom M.
Posts: 36
Joined: May 2019

Thank you Kazenmax.

Tom M.
Posts: 36
Joined: May 2019

Hi to all my friends, sorry I haven't posted for awhile. Treatment 7 went well. Same as all the others. Very mild side effects. Some tiredness and neuropathy that pretty much goes away during my off week. I'm looking forward to completing all of this and being rescanned. I haven't lost my hair, it got thinner but no one noticed. Not that that matters to me. I am grateful the treatments are going good. I'm due for a cea test next time (week from tomorrow) and oncology doc visit. As far as me having a good attitude, well I owe that to all of you. Your positive stories and words are my rock. I can't lose and I won't. Talk to all next week.  Take care,  Tom

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Wow I'm so glad you are doing so well.  Wishing you the best on your upcoming CEA test and doctor appointment.  I'm sure all will go well.  My hair thinned too but never lost it.  You are on the backside of the treatment now and can finally see the light at the end of the tunnel.  Thanks for the update.

Kim

wifetojeff69
Posts: 37
Joined: Aug 2019

It is hopeful for me to read you out look on this and how well you are doing on the folfox, praying everything will go well for my husband as well. Thanks for sharing.

Tom M.
Posts: 36
Joined: May 2019

There is always hope, and this blog is where it's at. Stay positive. It helps with everything.

sharps4590
Posts: 3
Joined: Mar 2019

Kinda late to the party but...good on you, Tom!!  Attitude and support....I do't know where I would have been without them.  It almost seems they're co-dependent.

Glad to hear your side effects are so minimal.  My neuropathy didn't start until about the 10th treatment and was worse about 2 months after completion.  Today, 7 1/2 months after complation, it appears to be getting less and less.  I can still play a pretty mean guitar!

Tom M.
Posts: 36
Joined: May 2019

Keep it up. Sounds great. Glad you can still play. Our son Anthony played a mean guitar. Very gifted for his young age.

Tom M.
Posts: 36
Joined: May 2019

My 8th treatment is this Wednesday. Looking forward to getting it done, and of course to seeing my chemo nurses. Blood work all came back good. The counts have remained very steady throughout. Cea went down again. 2.6 last month to 1.8 this time. I'm feeling really good. I will post the end of this week to update on side effects. So far so good. As I said in the past here I live in a rural area so we don't have a cancer support group. You are all my support and I love ya for it.You're an important part of attitude towards all of this. Thank you.

 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Glad that we can help.  Sounds like you are responding well with the treatment and the CEA too.  It sounds like the CEA is a good indicator for you and if it goes down - that is what you want it to do.  Good luck Wednesday.

Kim

Tom M.
Posts: 36
Joined: May 2019

Treatment 8 in the books. 4 more to go. Last one will be Oct.9 than another scan. Side effects still mild. Lucky I guess. No problems eating or getting sick. Number 9 coming in 2 weeks. I'm confident that I will finish all of this in a good way. Hoping my scan goes well. Praying for all my friends out there dealing with cancer.  Talk to all soon, take care    Tom

Tom M.
Posts: 36
Joined: May 2019

Does anyone have good advice for some hemorrhoid action going on. Thanks

beaumontdave's picture
beaumontdave
Posts: 992
Joined: Aug 2013

I had it during chemo, but Prep H handled it fine. I was religious with the petroleum jelly the for the time after surgeries and during chemo, because I tend to be rough on things if I don't think about it, and being at work with a rash really does suck.......................................................................Dave

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

I started off with a sitz bath. Soaks the area, and then dab dry, don't use paper (I have seperate cloths for the job). 

Now I have a bidet attached to the loo.  They are wonderful! 

And of course, the old diet. Keep things smooth and flowing out like soft serve ice cream, and that helps allot. That can be hard during chemo, when bowel movements can go from hard to runny in an hour. 

Oh, and try not to rush a BM, pushing just exacerbates those pesky hemmeroids. Take your time. Take some deep breaths. 

Just some ideas. 

Tru

Tom M.
Posts: 36
Joined: May 2019

Thanks my friends. Every little bit helps. 4 more treatments to complete my 12. If this is the worse of it I'm gonna make it.

Tom M.
Posts: 36
Joined: May 2019

Hi everyone, just updating. Blood counts remaining good. Cea holding steady at 1.8, on to treatment 9 of 12 tomorrow morning. Oh btw preparation h did the trick. Thanks

beaumontdave's picture
beaumontdave
Posts: 992
Joined: Aug 2013

Glad things are as comfortable as one could hope for, Tom, I had a similar experience as you with Folfox, but I didn't realize my luck until I started reading the stories here, back in '08. Ironically I finished my chemo and decided to celebrate in Vegas for my birthday, May 23rd. Hope you throw yourself a party when your done, and the CEA stays pinned down.......................................Dave

 

Tom M.
Posts: 36
Joined: May 2019

Thanks Dave. I feel very blessed for how things have been going on the dreaded folfox. Looking forward to October 9th which will be my 12th and hopefully last treatment. Then the scan and then the party.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I'm so glad you are doing the countdown as that really helps.  It stinks starting out but now you are counting down and seeing that only 4 to go and the end is so near for no more treatment.  You are rocking with this treatment and handling so well, so good for you.  Hope all went well today.

Kim

Tom M.
Posts: 36
Joined: May 2019

9 of 12 complete. On bag buddy disconnect day which was yesterday I felt extremely tired. I pretty much slept the whole day. Feeling tired today. Not sick, just tired. I'm used to moving around allot. I guess all the treatments are adding up now. Looking forward to the finish line. Thanks for all the input and advice. Will keep you all updated.  Tom

Tom M.
Posts: 36
Joined: May 2019

Feeling much better today. Looking forward to talking with oncologist next treatment. Writing all my questions down.  Wishing everyone a great Labor Day.

D_3John
Posts: 4
Joined: Sep 2019

I've been told that I have to have twelve treatments and I start on Tuesday.  I wanted to know if I should eat before I start the treatment and if so how far in advance of the treatment.  Also, I have a dog, should I be concerned?  Unfortuately, I have not had a teaching, so that I could be informed of what to expect from Folfox treatments.  So any information would be of help.

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

Welcome to the forum. 

May I suggest you start your very own thread, so that folks can reply just to you. That way, you will get all the info you need without having to shift through this thread. 

Here is the link where you can post https://csn.cancer.org/forum/128

We can fill you in on all that you shuold have been told before treatment. You have come to the right place. 

Tru

Tom M.
Posts: 36
Joined: May 2019

John, I know the many things running through your mind right now, all of us here do. So far I have completed 9 of 12. I just went into it with allot of faith and a very positive attitude. Your nurses will keep close tabs on you. Everyone responds differently. If you are fairly healthy now and are feeling good my guess is you will do fine. You will be given pre meds before chemo to combat possible side effects. Don't be afraid, my side effects are very minimal. Ask your nurses everything on your mind,jot it down if you have to. As far as eating, they feed me lunch when I go. Dog is fine, if its a jumper just protect your port. Watch the tube on your bag buddy too. Stay positive it's killing cancer. Listen to Kim and Tru. They both have a world of knowledge. Good luck. Peace be win you. You're in good hands. Your nurses are in charge now. Keep em laughing, they love it.     Tom

SoCal42's picture
SoCal42
Posts: 41
Joined: Jul 2017

I eat a small meal or snack an hour before I go in for infusions. I tend to get anticipatory nausea, so I don't want my stomach to be either too empty or too full. When I was on FOLFOX, I had a lot of the very weird neuropathy symptoms, but they usually didn't start up until right at the very end of the infusion. Some people don't get those things at all. If you are scheduled for a teaching session, they should go over the most common things to watch out for, and definitely as them all your questions. The website chemocare.com is also very helpful with summarizing drug side effects and their frequency. 

You might consider starting a brand new thread, and you can probaby get a lot more responses that way.

Tom M.
Posts: 36
Joined: May 2019

Seems like yesterday that I was saying 2 down 10 to go. Well now it's 10 down 2 to go. Everything holding good. Cea is still at 1.8. I get tired after treatment but it goes away during my full off week. Neuropathy is mild and it too subsides late in my off week. I am set up for another PET scan on October 7th. Please keep me in your prayers.      Thanks, Tom

myAZmountain
Posts: 256
Joined: Apr 2018

Hope that you continue to have just mild symptoms for the final push and that the PET scan is good in October!

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

You are almost done - keep it going as you are doing great.  Always appreciate the update.  Hope next treatment treats you well.

Kim

Pages

Subscribe to Comments for "Folfox7  2 down 10 to go"