New at this
Mary
Comments
-
Same boat
HI Mary, many of us are new here. I'm Diane, from Georgia and I'm 58. I have never been sick in my life until this.
I had my surgery on Jan. 7th, 2009. I'm also Stage III and had 17 nodes removed, 5 of which showed a 'few cancer cells'. I had numerous CT scans and an ultrasound that show no involvement in any other organs, praise God! My surgeon said 'this is just going to be a minor inconvenience in your life'. I remind myself of that, often.
I'm having the triple cocktail of 2 drugs via IV (port) followed by the 46 hour infusion of 3 ounces of the other drug via a fanny pack I wear around my waist. The fanny pack weighs about 3 lbs at the most. You can wear it round your shoulder, if you'd prefer. It's attached through your port. The nurse will show you the buttons and let you hear the 'almost empty' beep and the 'Empty' beep. No big deal!
Drink lots of liquids after chemo to flush the unused stuff out of your kidneys. Moving around also helps move the chemo through your system but if you're tired, sleep!
I had loose stools for about a month after surgery and it leveled off to daily, normal bowel movements. With chemo, I generally have 2 days that I cannot go at all before returning to normal. I've seen a number of posts that mention constipation after chemo days.
Please don't assume everyone has awful side effects. I was very shaky in my arms and legs after my 2nd chemo treatment but I had number 3 yesterday, and so far, feel fine! I've not been sick to my tummy at all. You might SMELL chemo for a few days. I did that with my first two but not my 3rd. The steroids they give you before chemo, via your port, to counteract any possible side effects can cause some flushing for 24 hours or a feeling of 'coming down with a tiny chest cold'. It can also give you a burst of energy and mess with sleep, for one night. No big deal!
I do know it's possible I'll have other side effects as I near treatment number 12, but so far it's okay. I had my treatment yesterday, got home at 2:00, at our supper at 5:00 and went out shopping with hubby. (My white count dropped after treatment number 2 so we skipped a week white they rebuilt to normal, unassisted.)
Go to About.com and type in exercise survival rates and colon cancer. The Dana Farber Cancer Institute did several studies with women who were Stage III w/ lymph involvement but no cancer in other organs and the study showed You would take the number doctor gave you, subtract that from 100 and then multiply the remainder by 55%. Let's say doctor said you have an 80% chance of remaining clear of cancer. 100- 80 = 20. 20 X .55% = 11% 80 = 11 = 91% of a survival rate! Only 9 people out of 100 (and that would include those with other health concerns, etc) might not make it.
The WHO/ CDC show out of 100,000 people worldwide, only 20 die of colon cancer each year. 10.3 men and 9.7 women. That's a very low number.
Eat right. Drink Grape Juice or eat red grapes (there's also a study on Reservatol and colon cancer prevention), keep your weight DOWN and EXERCISE! All of this raises those numbers! Prayer and Positive thinking, laughter and a supportive group of family and friends can throw you right off that chart!
Again, I'm new at this and these are things that worked for me. Welcome to the board. Wish you were NOT here because I wish you'd never gone through this!
God is good, Mary. Trust HIM.
Diane0 -
Good advice
Mary,
Diane has posted some good advice for you. I just wanted to let you know that I do the FOLFOX treatments and have no side effects other than cold sensitivity. That means that for a couple of days after treatment I can't eat or drink anything really cold. I also put on light gloves when going into the freezer or handling cold food. It's no big deal. Don't be afraid of treatment.
All the best,
Amy0 -
Same boatdianetavegia said:Same boat
HI Mary, many of us are new here. I'm Diane, from Georgia and I'm 58. I have never been sick in my life until this.
I had my surgery on Jan. 7th, 2009. I'm also Stage III and had 17 nodes removed, 5 of which showed a 'few cancer cells'. I had numerous CT scans and an ultrasound that show no involvement in any other organs, praise God! My surgeon said 'this is just going to be a minor inconvenience in your life'. I remind myself of that, often.
I'm having the triple cocktail of 2 drugs via IV (port) followed by the 46 hour infusion of 3 ounces of the other drug via a fanny pack I wear around my waist. The fanny pack weighs about 3 lbs at the most. You can wear it round your shoulder, if you'd prefer. It's attached through your port. The nurse will show you the buttons and let you hear the 'almost empty' beep and the 'Empty' beep. No big deal!
Drink lots of liquids after chemo to flush the unused stuff out of your kidneys. Moving around also helps move the chemo through your system but if you're tired, sleep!
I had loose stools for about a month after surgery and it leveled off to daily, normal bowel movements. With chemo, I generally have 2 days that I cannot go at all before returning to normal. I've seen a number of posts that mention constipation after chemo days.
Please don't assume everyone has awful side effects. I was very shaky in my arms and legs after my 2nd chemo treatment but I had number 3 yesterday, and so far, feel fine! I've not been sick to my tummy at all. You might SMELL chemo for a few days. I did that with my first two but not my 3rd. The steroids they give you before chemo, via your port, to counteract any possible side effects can cause some flushing for 24 hours or a feeling of 'coming down with a tiny chest cold'. It can also give you a burst of energy and mess with sleep, for one night. No big deal!
I do know it's possible I'll have other side effects as I near treatment number 12, but so far it's okay. I had my treatment yesterday, got home at 2:00, at our supper at 5:00 and went out shopping with hubby. (My white count dropped after treatment number 2 so we skipped a week white they rebuilt to normal, unassisted.)
Go to About.com and type in exercise survival rates and colon cancer. The Dana Farber Cancer Institute did several studies with women who were Stage III w/ lymph involvement but no cancer in other organs and the study showed You would take the number doctor gave you, subtract that from 100 and then multiply the remainder by 55%. Let's say doctor said you have an 80% chance of remaining clear of cancer. 100- 80 = 20. 20 X .55% = 11% 80 = 11 = 91% of a survival rate! Only 9 people out of 100 (and that would include those with other health concerns, etc) might not make it.
The WHO/ CDC show out of 100,000 people worldwide, only 20 die of colon cancer each year. 10.3 men and 9.7 women. That's a very low number.
Eat right. Drink Grape Juice or eat red grapes (there's also a study on Reservatol and colon cancer prevention), keep your weight DOWN and EXERCISE! All of this raises those numbers! Prayer and Positive thinking, laughter and a supportive group of family and friends can throw you right off that chart!
Again, I'm new at this and these are things that worked for me. Welcome to the board. Wish you were NOT here because I wish you'd never gone through this!
God is good, Mary. Trust HIM.
Diane
Hi Diane,
Thanks for the reply. I am 60 years old and live in PA near Phillie. I have also been pretty healthy most of my life. I did battle IBS for a long time so I have a tendency to have loose stools when I adversely react to foods. I have never had surgery or been on any meds until this cancer thing.
I have been working with a nutritionist since my diagnosis around 12 Jan. I take a lot of herbs to boost my immune system, antioxidants and anti-inflammatory herbs. I can only believe that they are doing their job for me.
I have not made a decsion about which course of treatment to follow yet. I did get freaked out reading some of the comments this morning from others. Please keep me posted as to your side effects, if any, as you progress along with your treatments.
Best of luck to you.
Peace,
Mary0 -
Very similar to me
I had the same resection done with 17 nodes and 7 positive. I am currently on round 9 of Folfox-4 and and it has been tolerable. I get an infusion of Two chemo drugs on Wednesdays every other week, and then they attach a small pump for overnight and that runs until thnext day where I go back for infusion of one more chemo drug. I get (Oxilipiilatin on Wed with Leucovorin, then a Bolus of 5FU, Thursdays Leucovorin and another bolus of 5FU) of course then back on the pump for overnight infusion of 5FU. The pump sounds burdensome but it fits in my shirt pockent, I tuck in most of the tubing and go to the store or bank or anywhere. It does require that two days every other week I have to take spongebaths to keep the port area and infusion pumb for sucking in water.
I am on the ninth session, 18 weeks in and its not been terrible, its a hassle and I don't feel real great the first five or so days after chemo, but the second week I am more like myself remembers. Match all of this with good diet, reasonable activity and exercise and make sure to share even minor side effects with the team, no matter what course you take. We can beat this, you and I became survivors the day we were diagnosed. I try hard not to let this disease define me, It picked a fight with me and I am going to muster the strength to beat it back; We are all here for each other asked lots of good questions. I miss cold drinks and cold foods, the Oxiliplatin kind of takes that away most of the time
Fight with us Mary, we beat this thing alot more than anyone in the public thinks.
Mike0 -
Good Advicemom_2_3 said:Good advice
Mary,
Diane has posted some good advice for you. I just wanted to let you know that I do the FOLFOX treatments and have no side effects other than cold sensitivity. That means that for a couple of days after treatment I can't eat or drink anything really cold. I also put on light gloves when going into the freezer or handling cold food. It's no big deal. Don't be afraid of treatment.
All the best,
Amy
Hi Amy,
Thanks for the words of encouragement. You and Diane are certainly helping me to calm down a little bit this morning. How long have you been doing your chemo treatments?
Best wishes,
Mary0 -
Very Similar to meMike49 said:Very similar to me
I had the same resection done with 17 nodes and 7 positive. I am currently on round 9 of Folfox-4 and and it has been tolerable. I get an infusion of Two chemo drugs on Wednesdays every other week, and then they attach a small pump for overnight and that runs until thnext day where I go back for infusion of one more chemo drug. I get (Oxilipiilatin on Wed with Leucovorin, then a Bolus of 5FU, Thursdays Leucovorin and another bolus of 5FU) of course then back on the pump for overnight infusion of 5FU. The pump sounds burdensome but it fits in my shirt pockent, I tuck in most of the tubing and go to the store or bank or anywhere. It does require that two days every other week I have to take spongebaths to keep the port area and infusion pumb for sucking in water.
I am on the ninth session, 18 weeks in and its not been terrible, its a hassle and I don't feel real great the first five or so days after chemo, but the second week I am more like myself remembers. Match all of this with good diet, reasonable activity and exercise and make sure to share even minor side effects with the team, no matter what course you take. We can beat this, you and I became survivors the day we were diagnosed. I try hard not to let this disease define me, It picked a fight with me and I am going to muster the strength to beat it back; We are all here for each other asked lots of good questions. I miss cold drinks and cold foods, the Oxiliplatin kind of takes that away most of the time
Fight with us Mary, we beat this thing alot more than anyone in the public thinks.
Mike
Mike, Amy and Diane,
Thanks for the feedback. Just one question. Before you began your treatment did any of you have the choice of the oral method using the drug Capecitabine? If so, what made you choose the Folfox?
Thanks for your help,
Mary0 -
Was toldmkaz said:Very Similar to me
Mike, Amy and Diane,
Thanks for the feedback. Just one question. Before you began your treatment did any of you have the choice of the oral method using the drug Capecitabine? If so, what made you choose the Folfox?
Thanks for your help,
Mary
My oncologist told me this is the best for me and never offered any pills. Trust your doctor! I don't have to go in on the 2nd day for a refill. My pump runs for 46 hours.
My chemo day is 30 mins of anti nausea and steriods then 2 hours of chemo. Pump is attached and I return two days later for them to just pull out the needle and send me home.
You're very welcome!
Diane0 -
No herbals, etc!!dianetavegia said:Was told
My oncologist told me this is the best for me and never offered any pills. Trust your doctor! I don't have to go in on the 2nd day for a refill. My pump runs for 46 hours.
My chemo day is 30 mins of anti nausea and steriods then 2 hours of chemo. Pump is attached and I return two days later for them to just pull out the needle and send me home.
You're very welcome!
Diane
Mary, they will ask you to stop all herbals during chemo. Also, no large doses of other vitamins. A 'Centrum Silver' type vitamin is fine. Herbals can react and Vit. C, in large doses, can stop the chemo from getting into the cells to do their job.
I've had 3 treatments with one week off due to low white count. 7 weeks.0 -
you can do it!
From one mary to another, you are tough and you will come to the right decision for yourself. You have done the right thing by coming online for all the information you can get! Be your own advocate and find out what your options are. Then, make a decision, along with your oncology team, what will be the best for you. This allows you some modicum of control and helps in the battle; loss of control is the hardest aspect of this disease so when we can take hold, we should! Come back often and let us know how you are doing!
mary0 -
Marymkaz said:Very Similar to me
Mike, Amy and Diane,
Thanks for the feedback. Just one question. Before you began your treatment did any of you have the choice of the oral method using the drug Capecitabine? If so, what made you choose the Folfox?
Thanks for your help,
Mary
Mary,
I was not given the option of Capecitabine (XELODA) at the time of my initiation into the C-world. I had my Power Port placed within days of diagnosis and the standard of care for my situation was FOLFOX. Keep in mind that I presented as Stage IV diagnosis while you presented as Stage III. I am not overly familiar with Capecitabine but perhaps you can ask your oncologist to share with you studies concerning recurrence after one versus the other.
With the FOLFOX I go in on Monday and sit there for 2 hours while I get infused. It's comfy there. They have private areas where I go and heated blankets. I can have free lunch brought in if I want and they have internet connectivity. After 2 hours the nurse attaches a small bottle to my Power Port and I wear that in a fanny pack until Wednesday afternoon at which point my husband disconnects the port. It is very easy for him to do so and just involves him pushing saline and heparin through the IV and pulling out the needle. The worst part of treatment is not being able to have a bath (at least the way I like it, submerged to my neck...) for Monday - Wednesday afternoon. Wednesday night on disconnect days always finds me in the bathtub for 1.5 hours...
When I presented I had 5 liver lesions plus the colon tumor. The largest liver lesion was 6.2 cm. After 4 rounds of FOLFOX I was given the go-ahead for surgery but ended up getting one more round after my consultation. So I have had 5 rounds of FOLFOX in total so far. Again, no issues. The dr told me the only cumulative effect is the potential neuropathy in the fingers/toes (they tingle) which I have not experienced. It is possible that this could develop with further treatments at which point we would stop the Oxaliplatin portion of the FOLFOX and start with Irinotecan. She said that if I didn't experience nausea and bowel issues with FOLFOX at the start that it unlikely to happen with further treatments.
For me FOLFOX was a huge help as when they removed 40% of my liver they found that the 6.2 cm lesion was down to .9 cm and was 90% necrotic so I was very responsive to that particular chemo. During my liver surgery I had an HAI pump implanted which directs chemo right into my liver. I started that chemo this past Monday and it is a piece of cake. I will start FOLFOX up again on April 6 and will do an additional 6 cycles (12 times) as adjuvant chemo.
My advice to you is to go into your treatment with confidence that everything will go well. Worrying about side effects that may or may not happen will do you no good. If you experience anything there are tons of different meds to handle those side effects.
All the best Mary!!0 -
Mary
Hi, just wanted to tell you I've been finished with my chemo for almost 9 months now. I was diagnosed with stage 3 colon cancer and it was in 6 out of 9 nodes. I wasn't given an option about which chemo,my onc said that I would be getting folfox/oxi because she felt that was the best to treat the kind of cancer I had. I had a port put in my chest to make things easier since I was going to have 2-3 hours of chemo every 2 weeks and a 48 hr infusion that you go home with. I was quite freaked out about all this but it was because it was all new and I didn't really know what to expect. You always hear all these horror stories about chemo and that scared me more than my diagnosis and suegery put together! But once I had the first one I knew what was going to happen and it wasn't so scary. Sure they tell you about all the side effects that might happen, but that doesn't mean you will have them, everyone reacts differently. I'm not going to tell you what I went thru,I'm only going to tell you about the tiredness after the chemo and I don't mean sleepy tired, its the way your body feels was pretty bad. But I did continue to work thru it all, some days were better then others,but I managed.There were times that I just layed around but if that's what you need, do it! Talk to your onc about anything you feel there are plenty of different meds they can give you if, and I do stress IF, you have any side effects. GOOD LUCK!! I'm sure you'll do fine, if need be I'll be around!0 -
I'm a 10 Year Survivor - Stage 3
I was diagnosed in November 1999 with Stage 3 Colon Cancer (3 large tumors); had over a foot of my colon removed, chemo and radiation.
My treatment was the 5FU with 30 days of continuous treatment (wore a pump) while doing daily radiation.
I go for my 10 year check up next month and still thanking God for being with me. Facing cancer is the most horrifying thing I've ever had to face.
Maybe I can be the one who answers questions and helps other folks through the process.0 -
shoppergalshoppergal said:Mary
Hi, just wanted to tell you I've been finished with my chemo for almost 9 months now. I was diagnosed with stage 3 colon cancer and it was in 6 out of 9 nodes. I wasn't given an option about which chemo,my onc said that I would be getting folfox/oxi because she felt that was the best to treat the kind of cancer I had. I had a port put in my chest to make things easier since I was going to have 2-3 hours of chemo every 2 weeks and a 48 hr infusion that you go home with. I was quite freaked out about all this but it was because it was all new and I didn't really know what to expect. You always hear all these horror stories about chemo and that scared me more than my diagnosis and suegery put together! But once I had the first one I knew what was going to happen and it wasn't so scary. Sure they tell you about all the side effects that might happen, but that doesn't mean you will have them, everyone reacts differently. I'm not going to tell you what I went thru,I'm only going to tell you about the tiredness after the chemo and I don't mean sleepy tired, its the way your body feels was pretty bad. But I did continue to work thru it all, some days were better then others,but I managed.There were times that I just layed around but if that's what you need, do it! Talk to your onc about anything you feel there are plenty of different meds they can give you if, and I do stress IF, you have any side effects. GOOD LUCK!! I'm sure you'll do fine, if need be I'll be around!
Hi,
Thanks for the feedback. Everyone has been so supportive to me today. I am definitely feeling a little less freaked out now. Of course crying 3 times today has helped also. Crying is very cleansing. Now I can get down to making an intelligent decision about my treatment.
Thanks so much,
Mary0 -
just getting started
I to was scared to death when they told me what treatment I would get. I had Folfox. I also had a mediport. Hopefully you'll be one who will go thru this with very few side effects. I did, my side effects were pretty mild. They have alot of meds now for nausea, diarrhea, and pain. Check and see in your area if there are any support groups. I go to two and I find it helpful to talk to others who've been thru it. We're all here to answer any questions and to give you support. God bless. Many hugs also.0 -
Looked up what I'm getting
Fluorouracil
Levoleucovorin
Oxaliplatin
I'm keeping my mind on living and things (Heaven) above and not on 'what ifs'.
) ♥ 0 -
I freaked toomkaz said:shoppergal
Hi,
Thanks for the feedback. Everyone has been so supportive to me today. I am definitely feeling a little less freaked out now. Of course crying 3 times today has helped also. Crying is very cleansing. Now I can get down to making an intelligent decision about my treatment.
Thanks so much,
Mary
It's definately a scary thing to be told - I cried for about 2 days straight and then came up with the decision. I honestly had thought about not doing anything, but my fiance convinced me otherwise. I had a mindset of "if the surgery got it all then why chemo?" Even now, every once in a while I have a bad day and cry, you're right, it's cleansing.
Anyway, I'm coming up on number 9 (FOLFOX) next week, it hasn't been all that bad. I have had a little bit of every side effect known to man and then some (at least it feels that way), but not all of anything aside from the cold, tingly hands and feet, and they definately let you know to put the gloves on, oh and I live in Minnesota, so it's always cold here.
The people here are wonderful, ask away!0 -
New at thisdianetavegia said:Looked up what I'm getting
Fluorouracil
Levoleucovorin
Oxaliplatin
I'm keeping my mind on living and things (Heaven) above and not on 'what ifs'.) ♥
Well I haven't been on the network in a few days. My husband and I decided to make a trip down to our townhouse here in Mrytle Beach. We thought it might help me to relax and make a decision about which course of chemo treatment to follow. Oral or the Folfox. Unfortunately the more I read on line about these drugs the more frightened I become. I do have a call into my oncologist to ask a few more questions. Hopefully I'll hear from him today. I need to make a decision soon. I have to admit, I am scared to death.
Mary0 -
my two centsmkaz said:New at this
Well I haven't been on the network in a few days. My husband and I decided to make a trip down to our townhouse here in Mrytle Beach. We thought it might help me to relax and make a decision about which course of chemo treatment to follow. Oral or the Folfox. Unfortunately the more I read on line about these drugs the more frightened I become. I do have a call into my oncologist to ask a few more questions. Hopefully I'll hear from him today. I need to make a decision soon. I have to admit, I am scared to death.
Mary
Hi Mary,
My two cents worth on this issue of taking the chemo and whether it's the oral capet(can't spell it- but it's trade name is Xeloda) or the Folfox. Well... the Folfox is definitely more of a "pain" to deal with taking, but it's the more aggressive of the two treatment choices. Wouldn't you want to do everything as aggressively as possible? I'd ever hate to think that down the road you might be facing a recurrence and wondering if things could have been different if you'd done the more aggressive chemo choice of Folfox.
Not to scare you- but you want to beat this cancer beast- be aggressive to it!
You'll get through it. Folfox isn't fun, but as a few people have already testified, some people don't experience the bad side effects. Even if you do, it's temporary.
Just my thoughts on that...
Take care & God bless you-
Lisa0
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