O Stoma Mia wrote:- Here is some information on FOLFOX for you.
- FOL-F-OX (infusion)
FOL - Folinic acid (Leucovorin) side effects
http://www.drugs.com/sfx/leucovorin-side-effects.html
http://chemocare.com/chemotherapy/drug- ... vorin.aspx
F – Fluorouracil (5-FU) side effects
http://www.drugs.com/sfx/fluorouracil-side-effects.html
http://chemocare.com/chemotherapy/drug- ... racil.aspx
OX - Oxaliplatin side effects
http://www.drugs.com/sfx/oxaliplatin-side-effects.html
http://chemocare.com/chemotherapy/drug- ... latin.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..
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
.- FOLFOX Treatment Journals - Several members have posted journals of their FOLFOX experience. Here is a link to one of them:
FOLFOX Treatment Diary
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55011
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59205&p=468320#p468320
.- 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 everthing 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 chemo/radiation therapy 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 treament 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 (FOLFOX) will be listed on the 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 Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
.- Your weight - Oxaliplatin dose is determined by patient body surface area (BSA) measured in meters squared, the formula for which requires your height and weight as input. Body Surface Area (BSA) Calculator. Be sure that they get your exact current weight, otherwise they may put the wrong dose of oxaliplatin in the syringe (i.e., don't get weighed with your pockets full of keys, cell-phone, wallet, etc, and be sure to take off your shoes and any heavy clothing). If you weigh in at a heavy weight, the dose they calculate for you may be too high, and it may amount to an overdose. A normal dose of Oxaliplatin (85mg/m2) is bad enough, and you certainly don't want to get an overdose. Also, make sure they re-weigh you properly for each new cycle of Oxaliplatin, since you may be losing weight from one week to the next, so your dose should be decreased each time according to amount of weight lost.
- Oxaliplatin side effects - Treating peripheral neuropathy by naturopathy -
Re: Oxaliplatin advice (post)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50311&p=385241#p385241
Prevention and Management of Chemotherapy-Induced-Peripheral Neuropathy in Survivors of Adult Cancers: ASCO Clinical Practice Guideline
http://jco.ascopubs.org/content/32/18/1941.full.pdf+html
Complementary Therapies for Chemo-Neuropathy: An Integrative Oncologist's Bag of Tricks
http://www.integrativeoncology-essentials.com/2013/06/complementary-therapies-for-chemo-neuropathy/
°- Note: Oxaliplatin toxicity and oxaliplatin desensitization protocols -
Oxaliplatin desensitization questions
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=35164#p246839
Allergic reaction to Oxi
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43093#p304849
Desensitization protocol for oxaliplatin
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57906&p=456018#p456018
Hypersensitivity Reactions to Oxaliplatin and the Application of a Desensitization Protocol
http://theoncologist.alphamedpress.org/content/9/5/546.full.pdf+html
°
°- Note: 5-FU toxicity and DPD deficiency (Dihydropyrimidine dehydrogenase deficiency)
Several sources indicate DPD Deficiency affects from three to eight percent of the population.
Over 11 thousand new cancer patients can expect to have some degree of DPD deficiency. Unfortunately, this is not typically discovered until a cancer patient receives some form of 5-FU.
In its most severe from, the combination of the deficiency and 5-FU toxicity has a 33% mortality rate. Thirteen hundred people die annually from 5-FU toxicity. 1300 people...if those same people were dying in plane crashes, by crazed gunmen, etc, there would be a media outrage. Instead, these are people dying quietly in hospitals and their homes.
Genetic testing is readily available but not part of the standard of care. It may not be covered under insurance plans as part of treatment. The cost of testing is relatively inexpensive. If your treatment is going to include 5-FU based, DEMAND TO BE TESTED. Pass along this information and do everything you can to make testing a standard part of the use of this dangerous drug.
Reference: http://dpd-deficiency.com/
Dihydropyrimidine dehydrogenase deficiency (DPD deficiency)
ColonClub thread: 5-FU & Xeloda Extremely Allergic-
horizon wrote: I had a bad experience my first infusion with a failed IV that completely changed my mind and got me to get a port (after input from this forum). You're already doing better than I did!
JennPixie wrote:With my tiny, uncooperative veins, there was no question. I need the port. After my first surgery, needing iv for fluids and meds, my arms were covered in bruises from all the times they had to stick, re-stick try again, lather, rinse, repete... (3 times they tried for a mid-line, and twice theyve had to bring in the ultrasound to look for a useable vein). My mom told me that i got my teeny little hide-and-seek veins from my dad. They had trouble with his veins, too.
JennPixie wrote:Well, the port is in. This just got real, y'all.
Before now, even though I spoken with the doctors, nurses, PA, and nurse navigator... chemo was still an oddly abstract idea. Not now. Now, there's a port. A place for it to go in. Very specifically for the chemo. Nothing else. This is really happening.
And damn, I'm scared.
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