Officially joined the FOLFOX bandwagon

[LeeT]

So today was my first FOLFOX tx. Dr. said that spike in CEA and extreme abdominal pain was most likely caused by the cancer. My last FOLFIRI tx did reduce ANC (?)/ liver function test quite a bit- so reduced the swelling but because of my last CT scan which was a bit iffy they thought it time to switch to plan B. My ALK Phosphates though were in the 500's (supposed to be 40) and onc says this show some irritation/ blockage of liver ducts (not sure if i have all the terminology correct). This could explain the constant feeling of being full- even though I may be hungry I feel full and after eating "too much" my liver pains. I asked about plan C and this will be Erbitux and something else- after testing to see if I am a "Kras Mutant" or not. They were not keen on switching me to Xeloda as they want to keep as a back up- plus I would have to pay for this (only 20% as my health benefits would cover 80%). I also asked about HIPEC and "hot chemo" but these are still experimental in Canada and considered non traditional...something he said we can explore at a later date.
My infusion was unremarkable and got in and out in record time- even headed for "All you can eat sushi"...managed to gorge myself on that (ate till my liver hurt ) but had to skip the yummy green tea ice cream All the nurses and Dr's warned me about the neuropathy and cold sensitivity- since it was -25 out today they were especially worried about this.
I managed to avoid the "throat closing" but the tingling in the fingers started immediately- not too comfortable typing this. I am going to see my ND next week to discuss some alternative and natural remedies for this..she has had some success in treating neuropathy with herbs and acupuncture.
I feel a bit better than I usually did after FOLFIRI- not so dizzy and tired..but could still be on a steroid high.....did come home for a rest. I am looking forward to not having the constant nose bleeds and runny nose from the Avastin.
I will have to see how the rest of the week treats me and what side effects I get- I am confident that this will work and deal with the side effects as they come...cause without this I guess I would be "toast" (hope this saying does not offend anyone).

[fritts44]

Holy Cow -- minus 25 degrees!! And I complain about my cold sensitivity here in Atlanta when it dips below 45!

Did you have nausea with the Folfiri? Make sure you take the anti-nausea meds with Folfox before the nausea comes on -- I learned that the hard way last round. I never did get rid of it.

I hope the side effects stay minimal with you!

Lee F.

[disco nap]

Welcome to FOLFOX - Ask to have the Calcium/Magnesium infusion before and after your infusion - it may help with neuropathy - I've been having it since TX#5 or so although my neuropathy is really kicking in now that I'm approaching TX#12. It's fairly normal in Ontario to have it. My ultra-conservative onc brought it up before I even knew it was a possibility. It will add about 1 hour to your day.

Also re: hIPEC - I have heard many Ontarians have had it in Buffalo, and ironically enough OHIP apparently covers it. Someone on this board (forget who) has went through this process and can hopefully chime in on this.

FOLFOX is very tolerable - you'll do great! Drink lots of fluids, try to stay active and bundle up and keep warm. The worst days are the ones after the 5FUpump is disconnected and the Dexamethasone wears off. I gained 20 pounds (and counting!) on FOLFOX.

The best part is when you are nearing the last few rounds it will be warm out so that will be easier on you I think. Finishing round 12 in -25 degrees is LE SUCK!

[kbrown2b]

I don't know where my first post went, but oh well Here goes again, so if my original shows up... ooops

HEy Girl... i am sooo happy that you are staying so positive, and that you and your dr. really "talked" about a plan . I only had yuckiness on folfox during the first 2 rounds.. but never experienced any nausea...

I want you to know that I think about you and your little man everyday!! keep your chin up and know we are all here for you..

We will always be "shitty sisters"....

love ya
kelley

[LeeT]

Lee F- Yip a whopping -25 (with the windchill) today and for the next few days but luckily they are calling for a "balmy" spell this weekend of 2 or 3 'C. My hubby suggested buying an automatic started for my car to avoid the cold sensitivity....me likey this idea...starting my car from the comfort of my living room- lifes little joys! A little nauseous this evening after eating something but took a pill right away. I was not too nauseous on FOLFIRI so hoping the same for this protocol.
Disco Nap: I asked my Dr. about the calcium infusion and they said it was something that they used to do but did not see any great results so they stopped, however if this gets worse I will definitely readdress this with them. OHIP "rocks" if they will pay for HIPEC in Buffalo...hey maybe I can fly out of there afterwards for a cheap vacation somewhere, maybe they will pay for it too- need to get out of the cold could count as a medical expense in our case? Oh and I can definitely do with the 20 pounds- is this from being hungry and eating or just the oxi that adds the weight. I am about 12 pounds underweight and battling to add on.

oh well onwards and upwards, planning a quiet weekend to recover but then after that going to kick some CRC butt!

[disco nap]

HaHa, you'd be surprised what I plan on claiming as a medical expense this year. I travelled for treatment in the beginning to a hospital near my family, then switched to a closer hospital to where I live (just like getting a second opinion and it was worth it!)

Odd that your onc won't do the Cal/Mag - my onc was so stingy with drugs and extras, and even he went for it. I didn't care if it worked or not, I liked the idea of having something "good" going into my veins on infusion day. I get benadryl also due to a minor allergic reaction during TX#6 so it's a loooong day.

If I recall your location correctly, you aren't far from some major hospitals - have you considered having a consult at one of them? I've had three really good oncs look at my case now and each of them has added something positive to my treatment process, whether it be new and different drugs, or a refreshed attitude.

[Bill5107]

Hey! At -25, have you tried to toss a cup of boiling water in the air to see if it turns to snow like the Youtube videos show?

[LeeT]

So it has warmed up here and was a balmy 2 C today...get your shorts out! So I have finished my chemo week with a few bumps in the road. As mentioned before the infusion was nothing too bad and felt really good Tuesday and most of Wednesday- left work early and went for a long nap. Thursday was pump removal day- again the morning felt good but was waiting for the crash. After my pump removal I climbed into my pj's and snuggled my pillow. Woke up at 5pm with a fever of 101...waited the half hour went up to 101.3 and then after a while up to 102.5...yes I was procrastinating to go the hospital - it was cold out and I was in my jammies already! Finally went to the local hospital (which is only a block away) but was rather hesitant as one of the on call Dr.s is Dr. No Personality and have dealt with him before for my son and a friend has had the same experience with him. Being my luck he was on duty! The nurses were really good and seemed to know what to do- masks on and a private room for me. Dr. comes in and asks what my problem is- explain chemo patient, fever more than 101 for more than an hour (this was almost two hours after I had first taken temp), give him the sheet that they gave me in Onc explaining the procedures to follow. He asks what he is supposed to do "I dunno?" This has never happened before but I guess you need to take a blood sample to check WBC....he replies "well the lab is closed, what am I supposed to do if you are neutropenic?"..."Again I don't know- that is why I am here". I think he wanted to give me some tylenol and send me home....which at this stage was more than happy to do. Finally he got up and left and by the actions figured he "called a friend for some answers"- who must have told him you can't just send her out without tests etc. 30min later the on call lab tech came in did blood work, blood cultures. Dr. No Personality came back felt, pokes and prodded. Luckily my WBC was good and my fever slowly started to come down. He did mention an antibiotic regiment he could try but that would involve me staying overnight and he did not think the hospital is the best place for me with all the superbugs etc. - first smart thing he said all night! Monitored me, gave some tylenol and when my temp was back to normal sent me home with a "good luck".
Anyhoo stayed home on Friday with liver pain which I am thinking is caused my constipation/ gas...I had no bm on Wed or Thurs despite drinking almost half a bottle of Milk of magnesium and handfuls (not literally) of senokot...nothing moved and after gorging myself on sushi on Tuesday figured I might have a sushi blockage Finally on Friday the reverse...I had a relationship with my loo that day- could not even drink a glass of water without keeping it in. Not sure if it was all the laxatives I took or the FOLFOX taking revenge?
Needless to say I was drained on Friday and lost about 2 lbs- which I can't afford.

So that was week one on FOLFOX...hopefully my next infusion I can beat the constipation by starting the senokot the night before chemo...any other advice would be most welcome--- and probably avoid all you can eat sushi would be a good idea (but it was so yummy at the time).
I still can't eat as have a full feeling all the time. I get hungry but after a few bites am full and my "liver" starts hurting- does anyone else experience this? I am on a liquid smoothie diet and am only weighing 104lbs - down from 120lbs. Oh and I crave orange juice and oranges all the time...only thing that appeals to me!

[CRguy]

Love your "take" on things and your sense of humour, so here is Dr. CRguy's prescription for you...

1. Avoid Dr. NO Personality, as his head is already in the proper location to do his OWN colonoscopy.

2. Temper your need to fulfill advertised requirements of any "all you CAN eat" sushifest.

3. Report any humorous findings immediately to the ColonClub.

4. Immediately start feeling better !

5. Repeat Step # 4 until you have perfected it.

6. When in doubt...refer to step # 4 !!!!

7. IF it has "... warmed up here and was a balmy 2 C today..." please book the next flight to Vancouver (sorry couldn't resist !!) BUT bring your raincoat, boots and possibly a life raft

8. Give yourself a HUGE pat on the back AND virtual hugs.....You Are A Trooper !

Many Cheers fellow canuckian
In Harmony on the Journey
CRguy

(( PS on a semi-serious note, yes the Vitamin C thing, which may be your orange juice craving, I found very obvious...was always looking for and cooking with citrus, despite taking mega C doses orally...listen to your body ! ))

[LeeT]

Hey CR Guy,
Thanks for the prescription a hell of a lot better than "two tylenols and a good luck".
I would be in Vancouver in a heart beat, will pack wellies and life raft- may steal those floatable devices from under the plane seat for extra measure. I love Vancouver and they have sooooo many great sushi places on Robson Street...hey I am supposed to be avoiding that- maybe not a great idea after all (I have no power to resist the draw of fresh sashimi) Maybe should head to Florida instead and indulge in some oranges straight from the tree....or Italy for some blood oranges!

Feeling a bit better today- a balmy 3 C today...spring is on it's way!

[CRguy]

Ok so now you're talking like an honourary Lotuslander...Robson name droppin' and all. I'll stay clear of the "raw" plates but blood oranges...I am IN !

Enjoy your heat wave and Happy Valentine's Day to the rest of the great white north.

Cheers
CRguy

[fritts44]

Ugh...sorry you ended up with Mr Personality -- he does not sound like he exudes confidence!

I've only had 2 rounds of Folfox (going in Wed for #3), but in my first 2 rounds, my bathroom habits are what you described (except I have a bag, so my "bag habits"). Constipation while being infused, then about 15 hours of diarrhea on disconnect day.

I've been thinking about doing a little Miralax while being infused to see if it lessens the diarrhea on disconnect day, but I'm too scared to try it! I work on those days, then my diarrhea day is Sat while I'm at home, so I may just keep this schedule so I dont have to worry about blowing out bags at work!

I hope you feel better & your fever has gone down! How's the cold sensitivity and neuropathy? I hope it's not too bad with you.

Lee F