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Folfox - 12 rounds - Not sure I can do this

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

Hi Everyone- 

 

I wanted to create a separate topic, but I am really struggling with the Folfox treatment.  

 

A bit of background... Diagnosed in March 2020, surgery in April.  Started Foxflox on June 1st, receiving treatment every 2 weeks.  

 

At first, I was devastated by the diagnosis.  But then my hopes were high after a successful surgery.  I went into the chemo, having what I felt like was a  strong body, mind and spirit.  Now after 6 rounds, I just feel so weak, exhausted, beat up and beat down.  I am also having unresolved neuropathy in my hands and feet. 

 

I guess I need some encouragement and just to connect.  Thank you for listening.  

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Do not let it get too bad - unless it already has, because there is a good chance you will suffer from it for the rest of your long life.  I speak as an example, and there are several here, who will also say the same. 

I hope that you have a good relationship with your Oncologist, as you need to talk to him about exactly how you are feeling, especially the neuropathy.   The fatigue, weakness and many of the other things you are experiencing, will go away, once treatment is over, but the neuropathy may haunt you every day. 

I think I mentioned before, that I had nine treatments of FOLFOX. I had radiation and 24/7 5FU, and as a Stage IV patient I have surpassed their five year prognosis and heading into my seventh year. It can be done, but you have to fight all the way. 

I remember - mostly because I did a video blog for myslef, during treament - saying more than once 'I just want to be me, again'.  I did not recognise myself any more. Like you, I was beat up and beat down.  It does get better, I promise you. 

So, chin up and ride the storm out. Talk with your Onc about your neuropathy and ALL that you are experiencing both physical and emotional. Stick with us, here, and we will stick with you. Ride the strom with you. 

Tru

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

Hi Tru

 

Thank you for your reply. Thank you for sharing your story.  It is a rough treatment for sure. I am supposed to have 12 rounds of Folfox.  Not sure how far I will make it... just one treatment at a time. Thank you for your compassion and love.

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Hi, folfox is rough stuff.  Make sure you are not getting any folic acid in your diet.  It is toxic to you at this time.

I have no experience with nueropathy so can't help you out there.

Tueffel
Posts: 108
Joined: Feb 2020

That is interesting and I did not know that. What happens if you "overdose" the folic acid? Does it decrease the efficiency of the chemo? I need to ask this because our family is eating at the moment a lot of tomatoes and salad which have folic acid...

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

You are eating natural folates in whole foods like tomatoes, salad greens.  Folic acid is an additive to foods.  Not sure if folic acid decreases chemo effectiveness, probably not but it can make YOU sick enough to stop chemo. 

myAZmountain's picture
myAZmountain
Posts: 344
Joined: Apr 2018

AIDIY--are you on Avastin and the 5FU pump as well? I think I had more advers efects from the Avastin than anything else. Tell your oncologist right away about the neuropathy,they can reduce the dose. I had to take 6-8 week breaks between rounds 3 -6 and 7-9 for infected /clotted ports with no bad outcome--tumors actually shrunk the most during the first 3 rounds. Oncologist at Mayo Phoenix told me their protocol is only 8 rounds --many are thinking that fewer rounds are just as effective. I was never shy about complaining of the side affects and making them reduce the dosages. Eventually got to the point that I would rather let the cancer do its thing than do any more chemo and I stopped after 9 infusions, no evidence of active disease since ( will be 2 years in November) 

Tom M.
Posts: 158
Joined: May 2019

You can do this, I know you can. The Folfox is killing cancer cells. Feeling beat down is normal, I was tired allot too. You are half way done, only 6 to go. Stay focused on you kicking this in the backside. You are in my thoughts and prayers as you go on.

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

Oh, I'm so sorry you are going through this.  I've been there and it's hard to sometimes get through the day.  Please, let your doctor know about the neuropathy.  My doctor wouldn't listen to me when and now I've got permanent damage where I'm on medication every day.  They are able to reduce the Oxy if you can tolerate it.  Don't give up hope, as you have us here.  It is very common for you not to have energy and just feel like crap.  It's also normal for you to have highs and lows, tired and normal, acceptance and denial.  It's just a rollercoaster of emotions and you are on that now.  Just make sure you are your best advocate when it comes to how you feel and your concerns.  Always post questions here, as we will help you get through this.

Kim

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

I am so sorry you have had to experience this. Thank you for giving love, hope and guidance to others. Your posts are a gift. Yes, a roller coaster of emotions is what I am going through.

 

Thank you for supporting me.  Have a beautiful day friend.

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

NOTE: This is not meant as a discouragement!

More than 10 years later, I am still dealing with neuropathy in my hands and feet.  It is not as severe (painful or draining) as in the beginning, but still something I have to deal with every day.  It used to be a major deal, now it is a small thing.  A very small thing.

The chemo is definitely a downer.  I would cocoon up (wrap up in a down comforter - in the middle of august) and not move until sometime Sunday afternoon when the chemo funk would lessen.  The only highlight and ray of hope through that rough patch was when my visiting nurse would come to remove the pump on Friday afternoon.  I wanted to marry her, my wife said no.  We managed.  By this time I lost over 100 lbs and the doctor kept threatening to keep me in the hospital if I didn't start to gain some weight.

I skipped my 12th round of treatment as it was really affecting my quality of life.  My onc (Yay Dr. Lisitra!) showed me a site that basically showed my stage three cancer rate of survival moved from 92% to 90% given my selected treatment protocol (folfox).  Then he said this to me about statistics, "Rick, the important thing to know about statistics is this - If you are on this side of the line, no matter what you do or do not do, you are going to die, and if you are on this side of the line, no matter what you do or do not do, you are going to live."  Two things from that convo so long ago.  One - cancer is complicated.  Two - you must own your decisions, not your doctors, the hospital or family, and friends who may have influenced your decisions along the way. Three (I know I said two thing - I lied) - You are beautiful and wonderfully made - you are living without a part of you they just cut out - in my case my whole colon.  AWESOME! Four (bonus take-away #2!) - it is nice to have someone there, by your side to advocate for you when you can't either because you are too emotionally down or high on morphine, etc.  I had two such people.  I was totally blessed and undeserved to have both my wife, Sally and my best friend, Willy by my side the whole time. Find that someone if you don't have at least one.

All that to say - it is a horrid experience and no one should have to go through it.  But, having gone through it and out the other side, I can tell you this - LIFE is good.  I am able to enjoy 13 grandkids I was not sure I was even going to see and at 60 I can still work hard (though the aches and pains last longer, come quicker, and never really heal the same as when I was young) and I have been enjoying "old age."  I was pretty sure while going through chemo I was not going to even see old age.  You can do it.  And like Home Depot - we can help!  Even if by only being there virtually.

 

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

I just want to thank all of you for taking the time to listen, share your stories and offer encouragement.  It really means so much to have found you all. 

 

I will be seeing for doctor tomorrow for what should be round 7.  I will be telling him again about the neuropathy.  I have mentioned it before... and he just said " Well let's keep going." I have a good relationship with my oncologist.. he is very kind and has lauged and cried with me. I am going to be very assertive that my neuropathy needs to be addressed.  Either by postponing my chemo or reducing the amount... I am not sure which is best or standard protocol?

 

To answer some questions... I don't believe I am on Avastin.  I go in for my infusion of Folfox (Folinic Acid, Oxyplatin, and 5FU).  From what I have been told I am on a pretty high dose, I need to find the paperwork that lists the exact amount of each infusion.  And then I have the 5FU pump for 46 hours. 

 

I find it very interesting that some clinics recommend a lesser amount of rounds.  It seems like should be a best practice that is implemented? 

 

Thank you again for your support.  I am very thankful for this community.  

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

The oxi is often the culprit in neuropathy, and the dosage can certainly be maniputlated (or skipped or eliminated).  Sometimes when you tell them you are considering stopping chemo altogether, they suddenly become more flexible on modifying the dosage.  It is a difficult decision, as you want to be doing all that you can do, but you also want to preserve a certain quality of life.  It is a very difficult and personal matter.  I think I recall you saying you were 3c, and that is likely why the oncologist is taking an aggressive approach.  But you are the one who controls your medical treatment and only you can decide how much and how long you will accept it.  Good luck!

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

I just want to say thank you again for the kind words. 

 

I had my oncology appointment and the Dr. seemed very concerned about my nueropathy. He lowered my dosage, and he said he would lower again if symptoms did not resolve. Dr. was very happy that I completed 6 rounds at my original dose. 

I am at my infusion, and I am hopeful that my other symptoms won't be so bad with the lower dose. 

Thank you for taking the time to listen

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

Here is a bit I wrote from 4 years ago.  Basically when my neuropathy would not resolve between sessions, I was done with the OX part of the mix.  Studies were looking reducing the treatments from 12 to 6.  My neuropathy got pretty bad.  When I was done with the Ox part, playing guitar was impossible.  Was like having novcaine on my fingers.  :)  About a year and a half later it was like a switch was thrown, and it resolved a lot after improving little by little.  I have since had another 26 rounds of FOLFORI and started on chemo pills a few months back.  And those are working :)  Good luck with it - it is not easy but to me it has been worth it without a doubt.  I am Stage IV and when disagnosed the 5 year survival rate was 10%.  I am 5-1/2 years in and in better health than most people other than the cancer :)

The way it was explained to me was that each things adds some percentage to the overall effectiveness of treatment (though I was only on 12 treatment cycle).  So, and these are not the actual numbers, if 5FU reduces the chances of a reoccurance to 50%, adding the Oxaliplatin would reduce the chances to 40%.  Again, those are not the acutal numbers.  From what I recall I was told overall the treatment reduces a 50-60% chance down to 25-30% chance.  My oncologist also does not use the Oxaliplatin in all 12 sessions.  The most he will do is 10 out of the 12 because the neourpathy risk in doing 12 outweighs the cancer fighing benefits.  He wanted a minimum of 8.  I was able to get that far.  Sessions 7 & 8 was where the peripheral neuropathy kicked in for me and he said it snowballs and is not linear, so he tapped me out.  He mentioned there are studies of only doing 6 treatments overall and not 12.  Others have mentioned that doctors in Japan (I think) only use 6 treatments.  

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

Hi! 

Thank you for this post.  It is very informative.... and very interesting that some places only recommend 6 treatments.  My neuropathy kicked in at round 6, and I am definitely glad the Oxyplatin was reduced.  My neuropathy for round 7 has greatly improved. 

 

I am so sorry you are going through this too, but thank you so much for sharing your story. 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Hi, one other thought is maybe get the onc to slow down the rate of oxa infusion from 2 hrs to 4 or 6 hrs.  

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

Slowing down helped me when I went on FOLFORI in terms of reaction/feeling poorly.  I think they may have also done it when I was on FOLXFOX, but can't quite remember.  But without a doubt it made a big difference on FOLFORI

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

There has been great response with the addition of celebrex (anti-inflammatory, COX-2 inhibitor) for neuropathy.  Research Dr. Lin and the ADAPT protocol and history of how it evolved in colorectal cancer treatment.  I wish I had known about it when on folfox!

zx10guy
Posts: 266
Joined: Dec 2013

Some points.  The other members had covered a lot of good information.  As have been stated, the Oxali can be reduced or eliminated all together while still going through the main bulk of the chemo treatment.  To emphasize, 5FU is the main workhorse chemo drug in the FOLFOX treatment.  It's not Oxali.  Oxali is an additive to enhance the treatment to get a few percentage points more effectiveness.  Some information about Oxali.  Why it is a cause of neuropathy is because Oxali has platinum in it.  It's a heavy metal that attacks nerves.  It starts at the nerve endings and works its way in.  This is why your extremities are the first to experience symptoms.  It is very important you discuss signs of neuropathy and how prolonged they are.  As had been said by the members, the neuropathy can get severe and be permanent.  If this is addressed early, the symptoms can be temporary or at least mild.  I still have some mild neuropathy at the bottoms of my feet 7 years after my last chemo treatment.

Celebrex.  I tried it and couldn't stay on it.  Your oncologist would probably be monitoring for this.  But my liver enzymes shot up when I went on Celebrex during chemo treatment.  My doc pulled me from using Celebrex because of this.  So be careful if you go down this route.  In addition, I don't know if anything has changed but there is a chance Celebrex won't be covered by your insurance.  As far as I know, Celebrex hasn't been officially recognized to be a therapy for cancer.  At the time I took it, it certainly wasn't.  I had to pay out of pocket and at that time I had to go name brand as no generics were available.  I paid $370 for a little over a month's supply.

Recovering from symptoms.  I did this inadvertently but there was science behind why this was helpful for me.  Unfortunately the best resource that explained this was Tom Marsilje's online blog.  He wrote an article about fasting during chemo.  Sadly he passed away a few years ago and his blog page has been taken down.  It was a wealth of information as Tom was a cancer drug researcher.  He was also interviewed for the PBS special on cancer called the Emperor of All Maladies.  From what I remember, there was mounting evidence and research that fasting just before starting a treatment cycle and during resulted in better effectiveness of the chemo treatment and faster recovery.  I know when the nausea hit, I was eating very little during my infusions.  I quickly discovered that my recovery took only a day or two versus almost a week.  I also started the anti-nausea meds the day before going in for my infusions.  You want the anti nausea meds in your blood stream to get ahead of any nausea before the symptoms start.

And has been stated, the reduction of cycles from 12 to 6 has been green lit as an approved treatment regiment as there appeared to be enough evidence from a clinical trial to show there was no reduction in effectiveness and outcome with reducing the cyles.

Hope you get through this.

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

wow. I was under the impression that the Oxaliplatin was the main cancer drug and the Folinic Acid and 5FU were in addition to increase the effectiveness. I am now having neuropathy in both my hands and feet so I will keep discussing this with my doctor. 

Could you please let me know the details of the fast? I am currently receiving my treatments on Monday and not feeling better until Friday.  I would think getting all these infusions on an empty stomach would cause horrible nausea? But I am open to anything that will help with this treatment.

 

Thank you for your support.

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

I semi fasted,minimal carbs for 24-48 hrs before infusion.  I wouldn't think you would want to not eat at all for a day or two due to weight loss which is not good in itself.  I would say eat healthy, low to no folic acid and low carb before infusion.

Yes, Oxa only gives a  3-5% advantage maybe.  5FU is the workhorse!  

Horney
Posts: 2
Joined: Aug 2020

I chose not to take this drug ... the side effects seem unbearable ... is there something else that you could try?

 

zx10guy
Posts: 266
Joined: Dec 2013

No.  5FU is a first line drug and FOLFOX with Oxali is the standard first line treatment.  No one is going to use Erbitux, Vectibix and other drugs as first line.  These are used when there is metastatic disease.  And even then, those drugs are used in combination with 5FU.

You said you chose not to do FOLFOX as it SEEMED to be unbearable.  Did you ever get FOLFOX treatment or did you base your decision on what you've read.  There are many people that sail through FOLFOX without issues.  Everyone is different and you won't know how your body will respond until you actually go through it.  What did you end up using as treatment if you didn't do FOLFOX?

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

Capecitabine (Xeloda) with or without oxaliplatin may be an alternative.

zx10guy
Posts: 266
Joined: Dec 2013

Xeloda is an alternative.  But it's still 5FU in capsule form.  For those unfamiliar, 5FU can be delivered in two ways:  IV injection or capsule.  So far I haven't seen any clear definitive reason why one is picked over another. With the IV method, you have to deal with carrying around the 46 hour drip bag after the in clinic infusion/BOLUS.  With Xeloda if I remmber correctly, you have to do a two week dosage course and then it's a week off.  With the IV option, many typically opt for a power port which is implanted into your chest.  It requires periodic flushing and other things.  I hated mine but I've been told it's better than a PICC line in your arm or doing a straight IV injection everytime; especially with Oxali which I understand burns like crazy during a normal IV injection.

Xeloda has specific side effects called hand/foot syndrome which is severe cracking of the skin.

Paige1138
Posts: 8
Joined: Apr 2020

I had surgery in March and started chemo 6 weeks after. My protocol is Folfox - my premeds are anti nausea drugs and dexamethasone. I currently have 3 sessions left. I had an interruption to my treatments when I got a MRSA blood infection in my port (Long story). I had it removed and a new port was placed after 6 weeks of IV antibiotics at home. I think that gap held off some of the neuropathy side effects. I had only completed one cycle of 2 chemos. Lately my diarrhea has gotten worse and starting to have bleeding/skin breakdown. My surgeon has prescribed some ointments - we will see if they help. My oncologist adjusted my treatment - with my 5FU pump connection she d/c'ed the bolus I receive before being hooked up. I told the nurse last time the neuropathy is getting worse and my fingertips are numb. They will adjust the oxaliplatin next week. Be open with your oncologist and know things can get better and be changed. I have actually gained over 15lbs with my treatment - the nurses keep telling me not to worry about it. They say it is the steroids and lack of activity since I am on disability bc I can't work while in treatment. My MRSA infection and Covid risk make it too difficult to work in a health care setting right now. 

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Just chipping in, late I know, as I'm one who did the 12 treatments of Folfox [without Avastin] and came through relatively unscathed. I was weaker and slower, but I worked through it, thankfully it ran Dec.-May, as the SoCal heat would have gotton to me. I had the hand and foot stuff for almost 2 years after, and may have a tiny residual amount, but I can't tell, as I already had a neurological disorder. The hot and cold sensitivity went away right after treatment ended. Good luck with your treatment, and welcome................................................Dave

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