Goodbye FOLFOX , hello Folfiri

[Marian1961]

Don't have full scan results yet but enough to know FOLFOX got scrapped today and Folfiri started. Looks like progression of liver met. I don't even know what to say.

[O Stoma Mia]

Don't have full scan results yet but enough to know FOLFOX got scrapped today and Folfiri started. Looks like progression of liver met. I don't even know what to say...

• FOL-F-IRI
  
  FOL - Folinic acid (Leucovorin) side effects
  https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_350#5
  http://www.drugs.com/sfx/leucovorin-side-effects.html
  http://chemocare.com/chemotherapy/drug-info/Leucovorin.aspx
  
  F – Fluorouracil (5-FU) side effects
  https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_260#5
  http://www.drugs.com/sfx/fluorouracil-side-effects.html
  http://chemocare.com/chemotherapy/drug-info/fluorouracil.aspx
  
  IRI - Irinotecan side effects
  http://www.mayoclinic.com/health/drug-information/DR600805/DSECTION=side-effects
  http://www.drugs.com/sfx/irinotecan-side-effects.html
  http://chemocare.com/chemotherapy/drug-info/irinotecan.aspx
  .
• Side effects log -
  _MON____TUE_____WED____THU____FRI_____SAT____SUN__
  .AM PM...AM PM....AM PM...AM PM...AM PM....AM PM...AM PM.
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Diarrhea
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Vomiting
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Nausea
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Mouth Sores
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hand-and-foot syndrome (HFS)
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fever or infection
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Stomach area pain
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Pain (other)
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fatigue
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Constipation
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Loss of appetite
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dehydration
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Skin problems
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hair loss
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dizziness
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Headache
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Insomnia
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Taste problems
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| etc..
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  .
• Medications for each side effect - For each of the major expected side effects, you should have a plan for treating the side effect at three possible levels of intensity, for example:
  
  1. Mild level - Home remedies or over-the-counter preparations
  2. Moderate level - Mild prescription medications or over-the-counter preparations
  3. Severe level - Strong prescription medications
  
  It would help to have the options identified in advance at these three levels for each major type of side effect (and approved by your doctor), although it may not be necessary to purchase everything in advance. Some products may be hard to find, so it may be wise to do some research in advance to determine where you are going to obtain the products in case you ever need them.
  
  It is important to be pro-active and start treating the problems early, as soon as they start to appear. There is a reason for this: Under chemotherapy, the immune system becomes somewhat compromised and a bit dysfunctional. It takes a bit longer for medications and treatments to take effect, so you need to start the treatments early, at the first sign of a problem. If you decide to wait until the problem becomes almost unbearable, then this might be a bit too late for your immune system to step in, catch up, and quickly solve the problem. In a way, there is no point in taking a 'macho' approach by trying to be a hero by toughing it out. Now is the time when your body needs tender loving care by giving it some form of treatment whenever something starts going wrong.
  .
• Consent form - If you have not done so already, you will need to read and sign the hospital's "Chemotherapy Informed Consent" form. This is a form that describes the major risks and benefits of the treatment procedure. I would recommend that you read your form thoroughly before you sign it, and be sure that any questions you might have are answered before you sign. Also, ask for a photocopy of the form that you have just signed. A sample template of such a form can be downloaded from the link below. Click on the link, and use the SaveAs option to save the file to the Windows Desktop. Then after the download is complete, open the file and look at its contents, in particular the section on "Risks/Side Effects of Proposed Treatment". This is where the main side effects of your treatment will be listed on the particular form that they give you to sign. Chemotherapy Consent Use and Discussion Guide
  .
• Book - I would recommend reading the following book, which gives a general introduction to chemotherapy without focusing on any particular drug. The emphasis is on how to deal with the main side effects that are common to most all chemotherapy regimens, i.e., nausea, diarrhea, fatigue, neuropathy, etc. It is a good guide for someone who has had no prior experience with chemotherapy
  "Chemotherapy Survival Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)

[Ashlee H.]

In my case, FOLFOX did very little for me. However, FOLFIRI has worked for the past 3 years. Sometimes I"m NED, and more often I am "stable". I found FOLFIRI easier than FOLFOX - although it did take me three treatments to get the pre-meds right. Hope it is as successful for you as it has been for me. - Ashlee

[Guinevere]

I've tolerated Folfiri much better than Folfox. I go for a CT on the 13th to see if it's keeping the tumors stable. Don't get discouraged. Not everyone responds to first line treatment but do to other regimens.

God bless ~
Guinevere

[Marian1961]

I'm back in my right head today. It was a huge shock. The chemo worked on the colon tumor, we already knew that because well, poop happened. But the pain in the abdomen was all but gone, something explained as the liver tumor pressing on the stomach. Huh. Guess not. It was just an unexpected gut kick. But onwards.

[Rob in PA]

I liked folfiri better. Did I just say "liked" !! Well,you know what I mean. Tolerated may be a better word

[ptfly]

folfox worked for my wife. she started folfiri this monday (several weeks after her pump surgery).
so far, so good. Seems like the majority of people find it easier than folfox.

[MilwaukeeMal]

Yep; in my case too FOLFIRI was much easier than FOLFOX. Side effects were much milder.

[skypup]

Folfiri worked well for me, but I had much more nausea. Like Ashlee said, getting the meds right takes a little attention. Good luck!

[Marian1961]

First round of Folfiri knocked him flat. He had experienced 2-3 yuck days per cycle on FOLFOX, lots of fatigue and just not feeling well. The Folfiri kept him in bed for 5 days plus another day of yuck, lots of nausea. I really wish my crystal ball worked because it is so hard to watch him feel so awful and not know if it is working.

[skypup]

That was my experience, too. I had to take zofran every 8 hours and lorazepam every 12 hours round the clock for 3-4 days to get the nausea under control. Please ask him to talk to his oncologist about how to handle the nausea -- it can be better!

[Marian1961]

Thank you! We have a meeting with the infusion tech tomorrow before the actual infusion begins. I'm hopeful they can try something else to help the nausea.

[Rob in PA]

Thank you! We have a meeting with the infusion tech tomorrow before the actual infusion begins. I'm hopeful they can try something else to help the nausea.

They tend to start you out on the cheapest anti nausea med (which isn't necessarily a bad thing) and hope that works, if not, they will try others but you have to let them know you'd like to switch.

Good luck with it.

Rob