I am classified as Stage IIA, I did not have any lymph node involvement, and it was absent in my margins, it states indeterminate for Lymphatic or small vessel invasion and absent for venous or large vessel invasion. It extended to the subserosa of my colon wall. My Petscan showed no mets to the liver.
I am having terrible side affects to chemo, including:
tingling in hands and feet and lips
severe senstitivity to cold
tongue and neck swelling off and on
red pin point spots on my legs, arms and chest
my fingers and toes have started constricting
the week of chemo, the 2nd day I start having buring upon urination and feel like I am getting a sinus infection
when I swallow it feels like a knot in my throat but sometimes it feels worse like a knife.
bone and joint pain off an on
I can deal with the fatigue, nausea and diahrrea I know that is expected, as well as the tingling and senstivity to cold.
I had my second cyle this week, I got the leucovorin and oxaliplatin in office and came home with a 5FU pump. They put me on Lorazempan and Zofran for nausea.
I went home that night and had to call the ambulance, by 10 pm, I was freezing and my face was hot, the EMT stated it felt like I had a temp of 104, but it was only registering at 96.3, my heart rate was 136, I was in a lot of bone and joint pain and very week.
My stomach has been bloated and I am very tender all over, I just saw my GI doc yesterday about the blood I'd passed via rectum last week,, he wants me to have a CT scan which won't be until next Wednesday.
I am to meet with two oncologists on Monday, so they can figure out what to do about me and in terms of treatment.
I am venting here, but I wonder, why do I need to do the chemo since I was stage II and yes it's genetic.
My GI doc was surprised to hear I was doing chemo when it was Stage IIa.
Part of me wants to do it, but the side affects are killing me softly.
Then the other part says well if it comes back in a year, it's your fought.
I just posted on another post, and have said it before... only YOU know your body best. I ended up stopping my adjuvant chemo because the aggressive dosing they put me on was literally killing me. I was scaring myself, my wife, my kids... I had chemoradiation prior to the resection and still had 6/10 positive nodes. It was an EXTREMELY difficult choice, but ONLY MINE to make... and fortunately, despite ALL THE SIDE EFFECTS, it appears to have been the right choice (knock on wood). When you reach a point when you feel that the chemo is doing more harm than good, it's time to reassess your therapy regimen. It DOESN'T make you a failure... there are MANY, MANY people who cannot complete chemo regimens. DO NOT BLAME YOURSELF, and LISTEN to what your body says. Our bodies are very smart, problem is, we DON'T listen to ourselves!
I agree w/ CD - you have to make that decision because if GOD FORBID there was something scary down the road you need to feel OK knowing that you did all that you could do... I was taken off chemo infusions early, so I know how you are feeling. You want to fight this evil disease, but your body is screaming ENOUGH ALREADY! I would listen to your oncologists...tell them everything you are feeling. With me, we first took out the oxy, then had to take it all out. I was still not willing to just give up so we decided to give the Xeloda a try and that has worked VERY well for ME. Maybe you can present that as an option to consider.
This is a tough road...and you have been through a lot. Let your doctors help you make the decision that is best for you and your tired body.
Thanks Cats and CD, we are going to discuss options about new therapy regimens, and what I may or may not be allergic too, he thinks the Oxi, I don't want any part of it. The problem is, now I feel like I have to do everything to prevent this from coming back.
But like CD said, only I can make this decision, and I have been there through the first time and this time, I feel chemo is doing more harm than good for me, I mean all these wicked lasting side affects?
I am just not there yet to where I can say I can live with the consequences if it does come back, I will still feel like it's my fought.
I think you already stated it, "I feel chemo is doing more harm than good for me..." Your body is telling you what you need to do, and THAT'S OK. I had an accupuncturist who used to work in an oncologist's office. She did believe in chemo and western medicine, but also in Eastern Medicine. She said how SO many times she would see people who were thriving doing Western and Eastern medicine, and that she swears that those people who were literally being torn down by chemo and not listening to their bodies were the ones that literally ended up killing themselves. She swore to me that she believed with all her heart that had they "listened to their bodies" and stopped when their bodies told them it was time to stop, they would have lived and thrived. Her arguement seemed so convincing, I don't know whether it had merit, but she did say how she watched those who listened to their bodies thrive and live a fruitful life. Might be worth considering at least a change to the regimen.
Food for thought. I know what a difficult decision it is. For me, I LITERALLY felt as though I was dying. Again, Christy... only YOU can make that decision. Talk to your doctors and your partner, get their opinions and make a decision. I think if you do this and ask what the statistics are if you can complete the regimen, weigh the pros and cons... how much better off will you be?
ATTITUDE IS EVERYTHING!
The Following User Says Thank You to CancerDad For This Useful Post: 4reality (04-27-2012)
Thanks CD-you're right. I have been wallowing over this all week and weekend. I have decided that I am not going to continue chemotherapy. It is doing me more harm than good, when I had that allergic reaction, which they say is quite rare, only 1% of people actually get it, I felt that was God's way of telling me to stop. I kept asking him for guidance on what to do, whether or not I should discontinue, whether or not to continue, etc., I really thought that night when I had that reaction, that if I had went to sleep I wouldn't wake up the next morning.
The doctors only suggest it because they have no data to prove other wise for stage II patients, there is a 2-3% chance it could help me, in what I've found on the web. There isn't a lot of data out there for chemo for stage II patients, and particularly genetic colon cancer cases. I've spoken with three oncologists, all they can tell me is that they'd recommend it. My GI doc was surprised when I told him I was on chemo and it didn't go to the lymph nodes.
I feel like it's doing me more harm than good. I am having to take all these antibiotics because of catching sinus infections and UTI's then steriods because of the reaction, etc., my poor body is all out of wack. I am medicating my medication and I am sick of it.
I've found a common ground, that I've done what I could, I've had the total colectomy, I am getting the genetic testing done, and will probably have an elective hysterectomy soon, I am going to change my diet and exercise more. I have put it in God's hands.
I'm just across the river from you, on the VA side of the Potomac.
Sorry to hear about your bad experience with chemo. I was scared to death before mine started. I just wanted to let you know there are alternative treatments out there. There is something called Insulin Potentiation Therapy. I don't know if I've spelled it right or not, but you can type IPT in a search engine and find out info on it. Also, there is another site www.ehoxsey.com that gives some good info about herbal tonics, vitamins, minerals, and diet.
Best of luck to you, Let us know what you decide to do.
while the prospect of stopping chemo is a scary one, damn ~ it sure sounds like your body is trying to tell you something. Maybe there's another chemo regimen out ther, or maybe (as others have said) you do not need chemo.
It's not a guessing game, but the inherent amount of variables that go along with a treatment like this have to cause a person to wonder what the right course of action truly is.
I am sorry that you experienced so many side effects. It sounds miserable and scarey and I agree, your body may be telling you something. I know that you had a hard decision to make and had to make the best one for yourself. Take good care of yourself and I will continue to keep you in my thoughts and prayers.
Hi guys, I talked with my oncologist this week, and he feels "I shouldn't give up just yet". I hate it when doctors, nurses, anyone in general thinks that just because you're chosing not to do chemo that you're giving up, that's not the case at all. I just feel like maybe this stuff isn't for me. I mean c'mon, they don't want to touch this stuff with their hands, yet they're putting it in my body!
He suggested we try 5FU, which isn't my favorite either, stop the Oxaliplatin, the Leucovorin is just a filler, so I will get that first, then a 5FU bolus, instead of having that pump that's 46 hours to take home. If that doesn't work, we were going to try the Xeloda pills for a round. I can't take the Zofran because he's not sure that I wasn't having a reaction to that either. Compazine doesn't work, Phenergran used to, but 25mg wasn't doing anything for me. It's the nausea that irks me the most, then the senstivity to cold, which hopefully knocking out the Oxaliplatin I wouldn't have to worry about.
My surgeon states I have a 5-10% chance of it coming back in the rectum, yet when I talked with him last he stated that I have an increased risk of it coming back because it's genetic and of my family hx. My oncologist states I have a 20-30% chance of it coming back, then I have a 60% chance of endometrial cancer. My gyno doesn't want to do the prophaylatic screening that should be done for someone with my genetic disposition. So they feel any chemo that I could take that would reduce those chances is good for me. However, I feel if I've had my entire colon removed, and am going to have a hysterectomy, probably sooner than later, because now I have a mass on the left ovary, that I will be fine without chemo. My body is already there, I just have to get my mind to the point, where I will be fine and won't feel like kicking myself if this indeed does come back at some point.
My mom did succumb to this disease, and everyone in her family that has had it did, except her older sister, who is now almost 8 years cancer free, so I do have hope. My father has been fighting cancer for 12 years now too.
I am just venting here, so thanks for listening. I guess I am just ready to get on with my life, and I don't want to be held up by chemo and it's side affects. Plus, I can't help but thinking this is doing me more harm than good. Every time I show up for a cycle, even though Monday will only be the 3rd I am amazed that I have returned.
There usually isn't much nausea with 5FU, mine was very mild and keeping something in my stomach, small frequent snacks took care of it. I had no mouth sores but some people get them from bolus 5FU. Sucking on ice or a popsicle while you are getting the bolus is supposed to prevent mouth sores.
You know what makes me really pissy about this whole chemo situation. I tell them I am nauseated when I am getting it, and they say well the pre-meds should have took care of that, which is dexamethasone, according to my research, this stuff has inactive ingredients such as calcium phosphate, lactose, and magnesium. I never given anything other than that, which doesn't make much sense to me, additionally, you would want those ingredients to be active, so that they can help with the offset of the Oxaliplatin because of it affecting the neurological senses. I also don't understand why I have to take 600 hours of chemo when a friend of mine was diagnosed with breast cancer, stage I, had an entire mastectomy and was on chemo for 8 hours over a period of 2 months, I guess it's stronger. Then I saw on another post of how the oncologists have told the patients to make sure they're using condoms with their partners, etc., however, I was not told of any such precaution, I don't know if it's because my partner is a woman or not.
Christy, I think you owe it to yourself to at least try the 5FU treatment. I am going for my 9th treatment today, and so far, it hasn't been that bad. (Knocking on lots of wood!!) I get it once a week, bolus shot, it takes all of 5 minutes. I do take anti-nausea meds for a few days after, but, I think I do it because I am on insulin, and I don't want to get nauseaus after an insulin injection and not be able to eat something to cover it. But, I really don't think I need to do that, it just makes me feel better about it mentally. Believe me, I know exactly how you're feeling about chemo! It royally sucks! But the alternative is worse. In my case, I was stage 3, 3 pos. lymph nodes, and they were able to remove the tumor. But the thought of stray cancer cells floating around my body scared me enough to do the chemo, even though the doctors gave me a good prognosis even if I chose not to do chemo.....that 15% extra made me go through with it. I did not want FolFox because I already have diabetic neuropathy, and I didn't want to risk making it worse. From what I have read, Oxaliplatin is some pretty wicked stuff....5FU isn't as bad. So please think it over, like I said before, you owe it to yourself to at least try. And, as far a sexual situations, I was not told anything about that either, but, nothing awful has happened to my husband yet......