Newly diagnosed firefighter--need advice on Folfox and Immunopower

icfire

I'm 40 years old, and was diagnosed with colon cancer on the 15th of July. I had a colon resection on the 27th, and the tumor was removed, with one lymph node affected, which makes me a IIIA. I started on Folfox6. I had the oxyalapatin (sp) today, with a pump in a fanny pack of 5FU for 46 hours. I am looking for any ideas, suggestions, etc, on keeping side effects under control. I feel okay today-kind of funny, but not really sick or anything.
I am returning to work in two weeks, as a firefighter. Anyone else out there maintained the ability to do a physically demanding job while taking Folfox?
And if this is what my 40's are like, God help me when I hit 50!
Also, I've received an order of Immunopower--just started looking into it, and went ahead and ordered it. I haven't started taking it yet, because I wanted to let my oncologist take a look at ingredients, etc. Anyone been taking Immunopower and had good results/bad results? Thanks for any answers!

lhsteer

Hi I am doing the folfox with fanny pack 48 hours combination started avastin with it too, I do it every 2 weeks. I didn't start having any side affects until 3 session then it is the tingling in toes and fingers real sensitive to cold I was not able to go back to work I would suggest get a lot of rest, drink a lot of juice berry, and get those ensure drinks need to keep weight up so eat as much as you can even small meals, but all day long> where are you from? if I may ask I go to the University of Iowa Cancer center, Iowa City, Iowa. anyhow you can email me at lhsteer@aol.com I would be glad to give you all the info I have my best friend is an epidemologist specialist and colon cancer is your field she works for the cancer institute out of D.C. she has been there from day one with me even my surgery which was an emergency she flew in for it, met with docs and keeps up with my prognosis and even calls dr. to find out what is going on so any thing I can help you with let me know. just email me karen

tkd3g

Hello there. I have the a similar diagnosis(rectal CA) and pretty much the same course of treatment ( as do many here on the board).

I just had my 2nd treatment last Monday. I experienced some side effects the next day. Mostly the tingling when touching cold things. Washing fruits and veggies for meals. Taking things out of the fridge and freezer.Solution- Wear gloves and wash things in warm water.

I also had a strange sensation in my throat. Kind of like a sore throat but a bit sharper. This happened when I drank cold or even room temp. liquids. Solution - drink only warm liquids the first 3 days after treatment, then I can have room temp. Not cold. If you forget and drink something cold - drink something warm to hot right away and that throat feeling will go away. ( it is a scary feeling - but that is all it is , a feeling. You can still breathe, nothing is closing up or anything. It is just the nerves in your throat that are stimulated by the cold)

I get tired on the second and third days. Solution- rest when you can. But make sure you do some exercise. Walk if nothing else. I makes you feel much better.

I have not gotten sick to my stomach, but felt a kind of sick feeling down there. I just try to keep some food in my belly. Usually ends up being bread or crackers. That last a couple of days.

Sometimes I get a metallic taste in my mouth. Solution- those round red and white peppermints. You know, the ones that have been around for ever. They get the taste out and if you feel sick, they help setttle your stomach. ( and 1 will last you over an hour!) I live on those things!! ( sorry, Em )

Well, those have been my experiences for the last 2 treatments. Everyone is different, so you may or may not get any or all of these side effects.

I have been taking martial arts now for 3 years. I go back and work out when ever I can. I know that it is the surgery that is holding me back, not the Oxyplatin. My suggestion, for what it's worth, is see how you feel. I haven't been sick or overly tired on this treatment. If you need to rest, try and get it. They have pills for the nausea, shots for low blood counts and a whole host of other stuff to help you thru this. Do what you need to feel as good as you can. Talk to the oncologist about any concerns.

And your thoughts on eating healthy are excellent. It will keep your strength up and give you the energy to fight this thing.

Best of luck to you. Great group of people here.

BTW - you firefighters are great. I live here in New York and have a great respect for all you do for us.

Barb

kangatoo

tkd3g said:

Hello there. I have the a similar diagnosis(rectal CA) and pretty much the same course of treatment ( as do many here on the board).

I just had my 2nd treatment last Monday. I experienced some side effects the next day. Mostly the tingling when touching cold things. Washing fruits and veggies for meals. Taking things out of the fridge and freezer.Solution- Wear gloves and wash things in warm water.

I also had a strange sensation in my throat. Kind of like a sore throat but a bit sharper. This happened when I drank cold or even room temp. liquids. Solution - drink only warm liquids the first 3 days after treatment, then I can have room temp. Not cold. If you forget and drink something cold - drink something warm to hot right away and that throat feeling will go away. ( it is a scary feeling - but that is all it is , a feeling. You can still breathe, nothing is closing up or anything. It is just the nerves in your throat that are stimulated by the cold)

I get tired on the second and third days. Solution- rest when you can. But make sure you do some exercise. Walk if nothing else. I makes you feel much better.

I have not gotten sick to my stomach, but felt a kind of sick feeling down there. I just try to keep some food in my belly. Usually ends up being bread or crackers. That last a couple of days.

Sometimes I get a metallic taste in my mouth. Solution- those round red and white peppermints. You know, the ones that have been around for ever. They get the taste out and if you feel sick, they help setttle your stomach. ( and 1 will last you over an hour!) I live on those things!! ( sorry, Em )

Well, those have been my experiences for the last 2 treatments. Everyone is different, so you may or may not get any or all of these side effects.

I have been taking martial arts now for 3 years. I go back and work out when ever I can. I know that it is the surgery that is holding me back, not the Oxyplatin. My suggestion, for what it's worth, is see how you feel. I haven't been sick or overly tired on this treatment. If you need to rest, try and get it. They have pills for the nausea, shots for low blood counts and a whole host of other stuff to help you thru this. Do what you need to feel as good as you can. Talk to the oncologist about any concerns.

And your thoughts on eating healthy are excellent. It will keep your strength up and give you the energy to fight this thing.

Best of luck to you. Great group of people here.

BTW - you firefighters are great. I live here in New York and have a great respect for all you do for us.

Barb

Welcome to the group icfire--and a great bunch of people too!
Just a note or two from me.
Although you will be given meds. if you suffer vomiting or nausea the "sicky" feeling often remains(as Barb said). I drank "room temperature" FLAT ginger beer which helped heaps. Also if you get the horrid metallic taste try chewing on "crystallized ginger" lollies.
(Emily will kill me for saying this 'cos she is against sugar--sorry Em!)
But they do help greatly.
Everyone is different re side effects so guess you will have to wait and see--but we do hope you cope ok.
Our very best--take care--b safe--kanga n Jen

2bhealed

kangatoo said:

Welcome to the group icfire--and a great bunch of people too!
Just a note or two from me.
Although you will be given meds. if you suffer vomiting or nausea the "sicky" feeling often remains(as Barb said). I drank "room temperature" FLAT ginger beer which helped heaps. Also if you get the horrid metallic taste try chewing on "crystallized ginger" lollies.
(Emily will kill me for saying this 'cos she is against sugar--sorry Em!)
But they do help greatly.
Everyone is different re side effects so guess you will have to wait and see--but we do hope you cope ok.
Our very best--take care--b safe--kanga n Jen

Hi there!

Welcome to the semi-colons.

I better respond here since you may wonder why barb and kanga are apologizing to me about the sugar! heehee

Cancer feeds on sugar so it is imperative to avoid sugar while you have active cancer....so read the labels and I suggest finding something other than Ensure to get your nutrients...such as fresh organic veggie juices full of live enzymes and green powders. (www.discountjuicers.com www.gardenoflifeusa.com)

I cannot give you any advice on what to do for the chemo since I did not do any. I was Stage 3 lymph pos zero mets but said NO to chemo and have done it all by Eastern Medicine (alternative to Western) and by using Western diagnostics. I am on a different healing path.

But if you do research you will find out about the sugar--that isn't an "alternative" theory--it's the truth. But as I said since I didn't do any chemo I cannot know how hard it is to find something for the nausea or the metallic taste.

Kanga is right for using ginger but the pure root grated in herbal tea would be better than the sugar lollies (sorry kanga) same for the peppermints.

I would highly recommend finding a naturopathic doctor who is knowledgable about cancer nutrition to help you manuever through this cancer gig.

We are here for you...any time...venting and ranting and whining are permitted. And the need to cry? well kanga is our poster child! :-)

peace, emily who is sipping her green tea as she writes this (which was recommended by her oncologist!)

2bhealed

2bhealed said:

Hi there!

Welcome to the semi-colons.

I better respond here since you may wonder why barb and kanga are apologizing to me about the sugar! heehee

Cancer feeds on sugar so it is imperative to avoid sugar while you have active cancer....so read the labels and I suggest finding something other than Ensure to get your nutrients...such as fresh organic veggie juices full of live enzymes and green powders. (www.discountjuicers.com www.gardenoflifeusa.com)

I cannot give you any advice on what to do for the chemo since I did not do any. I was Stage 3 lymph pos zero mets but said NO to chemo and have done it all by Eastern Medicine (alternative to Western) and by using Western diagnostics. I am on a different healing path.

But if you do research you will find out about the sugar--that isn't an "alternative" theory--it's the truth. But as I said since I didn't do any chemo I cannot know how hard it is to find something for the nausea or the metallic taste.

Kanga is right for using ginger but the pure root grated in herbal tea would be better than the sugar lollies (sorry kanga) same for the peppermints.

I would highly recommend finding a naturopathic doctor who is knowledgable about cancer nutrition to help you manuever through this cancer gig.

We are here for you...any time...venting and ranting and whining are permitted. And the need to cry? well kanga is our poster child! :-)

peace, emily who is sipping her green tea as she writes this (which was recommended by her oncologist!)

ps

If my memory serves me correctly nanuk (one of our semi-colons) did Folfox and he takes the Immunopower too. He is having surgery but if you email him here I am sure he will respond.

peace, emily

Btrcup

Hi ic, my hubby is 42 years old and was dx with Stage IV with mets to omentum & 13 out of 21 lymph nodes. He started chemo (Oxy, 5FU, Avastin & Leuko) in Apr and in July scans showed no evidence of disease. The only problem he is having now is neuropathy. He has no feelings in fingers & toes. This is a side effect of Oxyiliaplatin. If your onc gave you the regimen of B6, tums & mallox, please take this seriously. My hubby DID NOT, and now his neuropathy may be permanent (no way of know at this time).

Good luck and our prayers and with you.

Linda (Baltimore)

Unknown

Hi, my husband Bert was diagnosed last July (2003) with stage IIIc right colon cancer...had tumor removed, clear margins, but 4 nodes involved.

Started 5fu/leucavorin in August...only side effect was fatigue, diarrhea (big time to the point where it landed him in the hospital with a colon infection for 10 days in October), and extremely dry hands/feet. We both thought the the treatment that Bert was receiving was just not aggressive enough (high recurrence risk due to 4 nodes) but unfortunately, his insurance didn't cover treatment including Oxaliplatin, so I added him to my PPO and we researched and came up with another, much more aggressive onc who in January 2004 took over and put Bert on 5fu/leuc/oxal...administered much in the same way that you are getting yours.

To make a long story long (haha), he had less problems with this regime that the other one and never missed a day of work and he does not have a sit-down job either....it's go, go, go, with a lot of stress thrown in for good measure. Fatigue, yup maybe a day or two which usually hit on weekends (he got his treatment every other Thursday), dry hands and feet (tons of ointments...Bag Balm...helped that), minor neuropathy (sensitivity to cold and tingling/numbness of hands and feet) only about two or three days right after treatment, and he pretty much sailed through.

Chemo reactions/side effects are as individual and the individuals who are receiving the treatment. You may have none at all, you may have a few, you may have many. For the most part, it sounds like you are healthy otherwise and, although I am no doctor, will probably handle it pretty well.

As far as taking something to bolster the immune system, Bert's oncologist didn't want him taking anything other than a regular multi-vitamin and garlic supplements...that's it. Prior to treatment, Bert took many different supplements for the immune system, but they were all discontinued, on Doc's orders, once chemo started. Theory being that they would interfere with the chemo's strength in doing its job. There are many different opinions out there and controversy still rages about this subject, but it came down to trusting our oncologist and his way of fighting this beast and so we listened. Today, Bert is off chemo as was told that within two weeks of getting off, go ahead and start all the supplements again....to help in keeping the beast at bay.

Monika

nanuk

Hi IC: as a firefighter, you know the importance of water..drink, drink, drink, during your chemo to stay hydrated.
Also I had Folfox 6 Jan thru May 2004, took immunopower, and allthough I had the side effects,
my blood counts bounced back to more or less normal 2 weeks after chemo. Another unproven drug
is celebrex-it seems to be complementary to chemo, and the Dr's think it acts on the cancer-not sure how, but the only caviat is run it by your doctor to make sure you both are on the same wavelength-I'm a patient, not a doctor. Oh, and don't forget to juice..(carrots, celery, parsley,
apples, ginger root,spinach, and anything else you like.. Bud

juliababy

unknown said:

Hi, my husband Bert was diagnosed last July (2003) with stage IIIc right colon cancer...had tumor removed, clear margins, but 4 nodes involved.

Started 5fu/leucavorin in August...only side effect was fatigue, diarrhea (big time to the point where it landed him in the hospital with a colon infection for 10 days in October), and extremely dry hands/feet. We both thought the the treatment that Bert was receiving was just not aggressive enough (high recurrence risk due to 4 nodes) but unfortunately, his insurance didn't cover treatment including Oxaliplatin, so I added him to my PPO and we researched and came up with another, much more aggressive onc who in January 2004 took over and put Bert on 5fu/leuc/oxal...administered much in the same way that you are getting yours.

To make a long story long (haha), he had less problems with this regime that the other one and never missed a day of work and he does not have a sit-down job either....it's go, go, go, with a lot of stress thrown in for good measure. Fatigue, yup maybe a day or two which usually hit on weekends (he got his treatment every other Thursday), dry hands and feet (tons of ointments...Bag Balm...helped that), minor neuropathy (sensitivity to cold and tingling/numbness of hands and feet) only about two or three days right after treatment, and he pretty much sailed through.

Chemo reactions/side effects are as individual and the individuals who are receiving the treatment. You may have none at all, you may have a few, you may have many. For the most part, it sounds like you are healthy otherwise and, although I am no doctor, will probably handle it pretty well.

As far as taking something to bolster the immune system, Bert's oncologist didn't want him taking anything other than a regular multi-vitamin and garlic supplements...that's it. Prior to treatment, Bert took many different supplements for the immune system, but they were all discontinued, on Doc's orders, once chemo started. Theory being that they would interfere with the chemo's strength in doing its job. There are many different opinions out there and controversy still rages about this subject, but it came down to trusting our oncologist and his way of fighting this beast and so we listened. Today, Bert is off chemo as was told that within two weeks of getting off, go ahead and start all the supplements again....to help in keeping the beast at bay.

Monika

Hi Monika,

our situation sounds very alike. The only difference is that the patient is my father, who just turned 63 years old last month (august 26), who was also diagnosed in July of this year, July 7th to be exact, had surgery on July 30th to remove a 4cm malignant right colon mass with metastasis to 5 nodes. My dad will be starting treatment either the 14th or 15th of this month and his wonderful oncologist (whom I've known for about 15 years now, since I work at the hospital that my dad is being treated) is also planning to treat this aggressively. The oncologist has decided to put him on a clinical trial study that will include the standard 5fu/leu/ and then either, depending on which group he gets selected for, oxyplantin, irontecan or a combination of both. I am basically writing you b/c again, our loved ones situation sound very different and I am extremely HAPPY that your hubby is doing so well. I just hope and pray now that my dear dad will manage well through chemo and more importantly will survive this devasting disease. To make matters worse, I work in Pathology, so I am reminded daily of this whole mess.