The Colon Club

Posted: **Sat Feb 10, 2018 12:53 pm**

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.

Posted: **Sat Feb 10, 2018 1:12 pm**

Good luck with your treatment. Let the docs know your side effects so they can be taken care of right away. You'll do fine

Posted: **Sat Feb 10, 2018 2:59 pm**

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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
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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..
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
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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
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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.
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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
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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)
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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/
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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
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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-

Posted: **Sat Feb 10, 2018 5:12 pm**

Just the next step in beating this disease! Good luck! You got this

Posted: **Sat Feb 10, 2018 9:22 pm**

For me it was a lot better once I got one under my belt. There wasn't a fear of the unknown anymore and I could focus on getting through the next 6 months. 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!

Posted: **Sat Feb 10, 2018 11:36 pm**

I know how you feel. Getting the port was a huge step for me, too. I was nervous until I finished that first infusion. On the upside, if it is a power port, you can use it for the IV contrast when you get a scan.

Posted: **Sun Feb 11, 2018 9:03 pm**

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!

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.

Posted: **Sun Feb 11, 2018 9:17 pm**

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.

It was a nightmare. They tried over and over and had to give up on one arm. Then they had to try more than once to succeed in the other arm. Then my vein got inflamed and parts of my arm felt numb afterwards.

After I got my port in it was literally "1,2,3 ok it's in". I have a huge problem with needles and I never would have made it through 6 months of chemo without my port.

Posted: **Mon Feb 12, 2018 11:18 am**

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.

I think its quite normal to experience pre-treatement anxiety. I know I had it, and most people report the same with good reason.
Usually if there is going to be an big issue with the chemo it happens sooner rather than later. A lot of times during the first infusion.
So it's quite normal to feel some fear of the unknown until you've got a couple treatments under the belt.

As for the port. Chemo is rough on even the best of veins. The port is really the best way to go. It will also serve other purposes.
Your routine blood draws for example and even upcoming CT scans or colonoscopies - they can use the port instead of needing to break a vein.

drink lots of water, and then even more water.
best of luck to you!

Posted: **Mon Feb 12, 2018 11:35 am**

I hope your chemo goes well!*hugs*

Posted: **Mon Feb 12, 2018 1:48 pm**

Good luck Jenn. I am a few weeks behind you. Wishing you all the best. You can rock this!
S

Posted: **Mon Feb 12, 2018 3:35 pm**

I love my port. I can not tell you how many times,IV's have had to be moved on me because they fail.

It is a weird place to be poked. I asked for an RX of lidocaine and those clear plastic bandages they use over the port. 30-40 minutes before chemo, labs, whatever...I put the lidocaine on. I swear, you barely feel it.

Best of luck! I also get hydration 4 days after disconnect. They also recently added anti nausea medicine to the drip. Who knew? Keep everyone up to date on any changing solutions and chances are, they have something to help you. I have finished 8 of a scheduled 12, so am in the home stretch. Once you pass that 1/2 Mark, I think it becomes emotionally easier.

Posted: **Tue Feb 13, 2018 7:22 am**

Best advise drink upto 4 or 5 liters of water.
Stay away from raw foods and dairy products as easy to get upset stomach.
If you have any irregular heart beat, take it seriously and report to your doctor immediately. 5FU can cause heart related issues.
Best of luck.

Posted: **Wed Feb 14, 2018 1:09 pm**

Sitting in the room now, the last lil drips going through...
Had a nap while hubby stretched his legs.
Ooops, getting the loud empty beep!.
Next, I guess I get hooked up to the one I go home with...

So far, So good. I'll keep y'all updated, thanks so much for your support.

Posted: **Wed Feb 14, 2018 9:44 pm**

Oh funny, fuuu-neeey, very freakin funny. :roll:

Hot flashes and cold sensitivity at the same damn time.
Really cute, ha ha ha, laugh it up, Universe! That was a good one. Ha ha ha.

But I got me a fancy lace fan, like freakin Scarlett O'Harra, so

raspberry to you, tryin ta mess with me!

sorry guy's and gals, but that was just stupid crazy, made mad, and laugh at the same time :mrgreen:

The Colon Club

Just got real, y'all

Just got real, y'all

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FOLFOX

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