FOLFOX Treatment Diary

[DocSavage]

So here is an interesting side effect that I hadn't mentioned before. I gain about 4 or 5 lbs after infusion day - it appears that the steroids cause fluid retention. Then about two days after the pump is d/c'd I start peeing like the proverbial race horse and my weight goes back down. I have not correlated what it does to my blood pressure. Although it is also interesting I have not had to take my BP meds since starting treatment. In fact the opposite problem has been low blood pressure.

Anyway - is this fluid retention any of you fellow travelers have noticed?

-Andy

[Marylandmaniac]

So here is an interesting side effect that I hadn't mentioned before. I gain about 4 or 5 lbs after infusion day - it appears that the steroids cause fluid retention. Then about two days after the pump is d/c'd I start peeing like the proverbial race horse and my weight goes back down. I have not correlated what it does to my blood pressure. Although it is also interesting I have not had to take my BP meds since starting treatment. In fact the opposite problem has been low blood pressure.

Anyway - is this fluid retention any of you fellow travelers have noticed?

-Andy

Hi Andy,

I am on round 3 of FOLFOX. I flipped out when they weighed me after round 2. My weight went up 5 lbs and I was shocked. Since I was diagnosed I have gained 10 pounds. WTH??? I thought the one good thing out of all this would be losing a few pounds. My doctor thinks I am nuts and is happy that I am gaining and not losing weight. I am sure some is fluid/steroid induced but some is also from not working out as much as I used to and pretty much eating what appeals to me especially when I am feeling a bit yucky. This round I am noticing some muscle twitching in calves and am worried cramps are coming. Eating a banana and taking L-glutamine in hopes that I can head this off. Feeling ok but staying ahead with nausea medicine just in case. Cold sensitivity back and keeping my gloves right by the frig.

Thank you for doing the diary. It helps to read what you and others experience and how you dealt with it.

[DocSavage]

Treatment #7 was pretty much the same old stuff with a few things thrown in to keep it 'interesting'. I really noticed the neuropathy after this treatment. It is hard to describe - not really tingling like your fingers and toes falling asleep. It is a strange sensation of numbness that is not over all. There is still feeling but distinct numbness with certain pressures. It's in the tips of my fingers and from the balls of my feet to the toes.

The cold sensitivity is more acute and has not abated as fast as before. The 'dire rear' is as expected with no cramps. I am eating lomotil and imodium like tic-tacs. There is also a kind of background quesiness but it is controllable with zofran every 8 hours or so. My appetite is so-so but weight is holding fairly steady. WIth the scalded feeling in my mouth food is not very appetizing. Somebody said that everything tastes like cardboard and I would have to say that is a good description.

So I thought I was sailing into #8. I told the Oncologist about the neuropathy and he said he would d/c the oxaliplatin for a while. I said its not that bad yet but he doesn't want it get bad.

Then he read my blood work and said well your neutrophils are bit low so let's wait until Monday and they will surely rebound. A little chemo vacation is nice but now it pushes my last treatment into December. Oh well. Monday comes and what do you know neutrophil count has dropped even lower. Shesh... I asked if it was time for neulasta but he says let's try again on Wednesday. So I have been eating steak and drinking Guinness Stout and we shall see tomorrow. Given this extra week the neuropathy is about 90% resolved and my mouth is better but not normal.

A bit of good news - I had a CT scan with contrast this week and while I have not read the report myself the Dr. said there is no evidence of metastatic spread and the non diagnostic hypodensities have not changed at all. So I am thinking all is well. It doesn't let me off the hook for the next 5 treatments...

[juliej]

First of all, excellent news about the CT scan! News like that can make the neuropathy, 'dire rear', and nausea easier to handle.

I agree with your doc about d/c the oxaliplatin. What you're experiencing now isn't the whole effect. Neuropathy often gets worse for a few weeks after stopping oxaliplatin so you need to be very careful in gauging exactly how bad it is to avoid permanent nerve damage.

Love your neutrophils-raising strategy -- steak and Guinness! Low WBC is common at this point in treatment. Be cautious around people with colds or the flu.

[DocSavage]

Well - my neutrophils have come up considerably but they want to wait one more week before resuming treatments. Its nice to feel more normal but I just want to get on with it. I know its for the best as I dont want get so run down that I get sick at every turn...

This pushes the end date into December. No Neulasta needed at least. I will try Nutella to see if that works...

-Andy

[juliej]

No Neulasta needed at least. I will try Nutella to see if that works...

Nuelasta... Nutella... what's in a name?

They opened a Nutella bar at Eataly's in NYC. You can get brioche, saccottino, crostatina, crepes - almost anything - filled or slathered with Nutella. There's always a line of addicts at the counter when I walk by.

[DocSavage]

Well let me catch up... I am not sure what worked the best, the Nutella, the Guinness and steak or just the tincture of time but my blood work came back normal which allowed me to have treatment #8. It was nice to be off for almost a month and my wife said it was nice to have her sweet husband back but it has pushed my last treatment into December and even better I have a treatment on my birthday in November.

Anyway number 8 was a walk in the park compared to the past with no Oxaliplatin and just the 5-FU along with the adjuncts. I say walk in the park - only 3 days of the 'dire rear', still have the taste change/burned mouth, but no neuropathy or cold sensitivity so there is that.

I still get the tremor, hypervigilance and reflux from the steroids but have learned how to counter with ativan and cimetidine proactively.

It was interesting to note that when my neutrophils reached their nadir how tired I was all the time - naps were not just cat naps but really deep sleep.

[DocSavage]

Now on to the next installment -

Treatment #9 - because my neuropathy resolved during my chemo holiday the Dr. decided to put the Oxaliplatin back in and said we would see what happened. I think because of the gap it has been much less intense than I expected although still not much fun. The cold sensitivity is back but not quite as bad as before. The neuropathy is back as well and a bit different this time. There is a wave of tingling that comes and goes. It is mostly in my feet from the ball of the foot out towards the toes. My mental state is pretty good as I only have three more to go!

I have not had much nausea or 'dire rear' but that usually doesn't start until the Wednesday after the infusion.

I asked when I could get the port taken out as I hate that thing - everytime I brush against it I am reminded of what is going on. The Doc said six weeks after the last treatment I would have a CT scan. If it is clear then out comes the port. Trying not to get to excited as there is still a row to hoe here. I hope to feel good enough to enjoy Thanksgiving with the kids and grandkids....

[justin case]

I will be 61 in a few months, and I believe Folfox was very helpful, to make that a great achievement. There are more unpleasant things in life, than some of the discomfort Chemo can cause. Your bright outlook on the road to recovery is inspiring, and as every knows me here, a few beers don't hurt ! You have the demeanor to beat this trouble, and I'm in your corner (for what that is worth )
Michael

[DocSavage]

FInished cycle 10 and 11. Nothing new to report other than the fatigue seems to be worse on the couple of days after the pump is removed. Even simple things tend to get me either winded, light headed and/sleepy. I find I have to be quite careful when standing up or getting out of bed. I actually passed out once jumping up from bed - I never had that happen before. It was a good thing it was on the carpet and I didn't hit my head. As soon as I hit the floor I woke up and said to myself 'that was weird'. My wife heard the thump and asked if I was ok. I said that I felt the need for a very short nap - on the floor. After that incident I have really been aware of getting upright and being as careful as possible

The holiday off oxaliplatin helped with the neuropathy but it is back and seems to be a bit worse. Before it was more just a off feeling - a sort of numbness in my hands and feet. Now it is full blown tingling and numbness like you just came in from the cold. The cold sensitivity is also more acute, just getting things out of the fridge sets it off like I was touching something extremely cold. Even walking outside barefoot to get the paper is like walking through snow. In addition I can tell my typing (never the best) is affected as well.

This cycle also has a bit more quesiness - it is controlled pretty well by zofran, however it does make it hard to eat even though I feel hungry. I can't really tell if I am just so tired of the whole thing or if it really is side effects.

Only one more treatment on December 14th - then pump off December 16th! My wife and I are going to go someplace nice after that for a celebration. Although I guess we should wait until most of the side effects have dissipated so as have fun....

[DocSavage]

I am currently sitting in the infusion center getting my #12 of 12 treatment! I thought I might not be getting the oxaliplatin today because the neuropathy is pretty bad - but they are doing it anyway.

The dexamethasone has been run in and I can feel the jitters starting - or perhaps its the three cups of coffee.

The current plan is in 6 weeks I will have a CT scan. If that is clear I get the port out and then we go back to the life that was regularly scheduled. At least that is my hope

-Andy

[SEWHAPPY]

Congratulations on reaching #12! I start #1 in two weeks and it has been helpful to read your experience. Thanks!

[DocSavage]

Sew -

Looking back through the lens of rose colored glasses it wasn't so bad once I got into the rhythm. In retrospect the third treatment was the worst with bad diarrhea and stomach cramps If I had called the Oncologist office sooner I would have been made more comfortable sooner. So that one was on me for trying to be tough. I learned better living through chemistry is a viable solution - i.e. take the drugs the docs prescribe!

Most of the other side effects in my mind are more aggrivations than real problems once I could recognize them for what they were. This site and its denizens certainly helped there.

After you have pooped in places you never would have thought you would ever - nothing much can bother you

-Andy

[LeonW]

getting my #12 of 12 treatment! . . in 6 weeks I will have a CT scan . . . get the port out and then we go back to the life that was regularly scheduled

Congrats with 12 of 12. Enjoy the break. You'll soon feel better.

. . If I had called the Oncologist office sooner I would have been made more comfortable sooner. So that one was on me for trying to be tough. I learned better living through chemistry is a viable solution - i.e. take the drugs the docs prescribe!

Been there, have done same. If I'd known about this board earlier, I would have informed my onc much earlier. Let's continue to spread the word.

Most of the other side effects in my mind are more aggrivations than real problems once I could recognize them for what they were. This site and its denizens certainly helped there.

(italics are mine - LW)

wise words
take care / congrats again
L

[DocSavage]

Leon -

Reading between the lines on your sig - I think I really had it easy - you are one bad ass!

-Andy