CSN Login
Members Online: 7

You are here

Great news!

CSN is getting an upgrade. All of your posts will still be here, but the website will have a new look, new features and be mobile-friendly. To prepare for the changes, the site will be down briefly at the end November. We’ll continue to provide updates as we get closer.    

Need advise on Chemo!

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I took my 3rd dose of folfox on Monday. It has been a tough week, side effects are a lot worse this time. I am debating whether or not to continue after round 4 (I am sheduled for 8 rounds) I just re-read my pathology report and dont know if the chemo is doing more bad than good. The tumor was removed along with my rectum and anal canal. There was no sign of carsinoma in the margins or 4 lymph nodes that were removed. No metastasis, the Kras and braf mutation analysis negative. Stage 1. I was told by my onc that it was up to me to start the mop up chemo, i thought I should be safe than sorry however the more i read the more i am confused. Could the chemo be doing more harm to my liver and other organs than good? Any feedback would be appreciated.
Tom

coloCan
Posts: 1956
Joined: Oct 2009

As another alternative, onc can reduce or eliminate totally the oxi from the FOLFOX, which, of course, is no longer FOLFOX but its much easier on you that way, or it was for me. Did 5 doses oxi preop, but could tolerate only 4 of 8 of FOLFOX with oxi after surgery.....If you're stage I, you may not need it at all; I was/am Stage 3....steve

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Tom, my third chemo was also harder and from what I understand it will more than likely continue to get worse. I don't know how bad your symptom's are, I only know that I take my days one at a time and my sypmtoms as they come. We are at the same place with number of treatments and I know each time I have felt a new things. I don't like it. My diagnosis is different than you in that I had lymph nodes involved, half of the ones removed. I am 3C and have 12 rounds total to do. One more treatment and you are half way there if you decide to stay with the treatment. I will support either of your decisions.

Your treatment buddy, Gail

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I wish it were more definative onc leaves it up to me????? What the #$&# Do I know.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

others may have more relevant experience, i hope they comment

i think this is a big side effect to avoid,
your bloods maybe ok after 3 cycles, mine at 6 tell the chemo story, most below normal levels.

real healthy diet, no alcohol, plenty of water and milk thistle are all good things to help liver.

cheers,

pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i am like gail, 3c as well. clear margin and 3 positive nodes.
about to do 6 of 12 folfox tuesday
my folfox has been ok so far, besides little t ingles,thankyou god.
i am nervous given everyones elses problems though.

my real life friend was stage 2, no nodes positive, but was advised to 12 folfox, made about half of them and her onc pulled oxali as nerve damage not worth it. i had a second opinion from her onc, so i meet him and was impressed. so be guided by a well informed onc.
i see my onc every cycle day before hit, so we have blood test results and can adjust dose.

i hope your cure is not worse than than the illness. you sound similar to my friend.

hope you are feeling better,

pete your treatment buddy from downunder

ps do a post with side effects like alot of us
we have been refering to the treatments as the folfox express.
ie could mean a train that runs you over, or in my case a scary theme park ride.

the main thing is many of us are on the journey.
got to get up and juice, do yoga, tcm and vitamins.
maybe some or all of these are helping

Annabelle41415's picture
Annabelle41415
Posts: 6733
Joined: Feb 2009

That is a hard decision and only one that you can make. Just make sure your decision is not one of "should of, would of, could of" because you don't want to be kicking yourself, and that is for either decision. Folfox does get harder each time you get it and the third one was really hard on me too. I'm still dealing with neuropathy but it is getting much better, except when in cold weather, then my feet really bother me. Good luck on you decision.

Kim

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I will bring up the subject with my onc again next round.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Tom,

I chose to not do chemo for many reasons but here were some:

chemo induced secondary cancers
chemo induced permanent kidney and/or lung damage
chemo induced peripheral neuropathy
chemo induced leukemia

etc etc etc

That's not even counting the chemo induced diarrhea, dehydration, mouth sores, rashes, hair loss etc....

My tumor did not give off a CEA so my onc would not have had any way to measure if the chemo was working or not. Given the fact that no one in my family had survived chemo or cancer, I opted to go an alternate route using Eastern medicine (TCM), diet, yoga and many other healing modalities to heal my cancer. I was Stage III colon with 2/19 lymph pos and zero mets.

Thankfully my Mayo Clinic oncologist supported me even though I made my decision to opt out of doing any chemo.

Perhaps get a juicer and do CHEMIA (juice of the plant) instead.

Check out www.crazysexycancer.com Kris Carr has an amazing testimony about her cancer journey and juicing.

My tumor was in my sigmoid colon. I don't know anything about rectum or anal....

peace, emily

p.s. I have remained cancer free for 9 1/2 years having never done any chemo.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

This is what I was hoping to hear. Thank you I will do some research on this I really appreciate the info.
And Congrats on 9 1/2 years cancer free WOO HOO !!!
Tom

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You can click on my name to the right, and read my profile,
and the "blog" portion.

There -are- options and alternative routes to take.

Best of health,

John

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hi John,
I have read a bunch of your post's but didnt realize what treatments you have chosen. The fact that you have taken an alternate route and have been sucsessful is very interesting. I have thought for years about eating healthier and juicing however it takes such disipline I just didnt have the drive to do it. But now things have changed. Cancer will change your attitude about things. I will def do the research and talk with my onc.
Tom

John23's picture
John23
Posts: 2140
Joined: Jan 2007

While diet and exercise is important, it isn't "the cure", by any means.

Eating well and getting your immune system built up, is of primary
importance, and "juicing" can be a great path to take to do that.
Anything you can do to build that immune system up, is a major plus.

The herbs I've used are known to have anti-cancer properties.
Extensive tests on those herbs by some of the leading cancer
research centers and pharmaceutical companies bear that out.

Please note: The herbs can be used with present conventional treatments.

Did the herbs get rid of my cancer? I have absolutely no way to
prove that it has. If my cancer is gone or in remission, it can be
attributed to "sheer luck" as well as anything else. It can't be
attributed to "chemotherapy", since I did not use any, but if
I had, I'm sure they would attribute it to chemo.

I personally believe that the best way to survive, is not to
allow your body to be beaten into a pulp. The battle your body
fights should be against cancer, not against the ravages of
what they try to tell you will "cure you".

There are absolutely no guarantees with anything, Tom.

Chemotherapy and radiation are only two methods out of thousands
that have been used in an effort to beat cancer.

I cringe every time I read advice telling a cancer victim that
"you don't want to look back and wish you did something different".

It's usually said in defense of using chemotherapy and radiation,
not an alternative. There should never be a reason to "look back
and wish", because there are no guarantees that whatever route you
take will keep you alive.

The most ironic part of it all?

Once your body has become beaten down with chemical therapies
and radiation's ravages, there is very little chance that something
as safe as herbal formulas will be able to fix the intense damage.

Doing an alternative has one big benefit.... If you try it and
it doesn't work, your immune system remains at it's best, if not
better than before, and the toxic remedies can still be used if desired;
it's never too late for the "big guns".

It should be understood, that having too much of any toxic treatments
can destroy the possibility for success of using a less damaging remedy
in the future; the damaging effects of the toxic remedies can render
anything safer, useless.

Personally, I would have more reason to "look back and wish", if I
ended up in hospice after being sick from chemo and radiation for
years. It's a sobering thought.

It's not to say that I won't end up there anyway, regardless of
TCM herbs, or juice, of course. But just the idea of being sick
from treatments that could end up failing, isn't conducive to my
desire to survive against all odds. If I feel there's a "better way",
I'll take it. That should be everyone's criteria for survival; question
everything, dot the I's and cross the T's.

There are some very valid options, Tom. One only needs the courage
to learn and understand those options. It takes no courage to
believe in your own body's ability to survive; it takes trust.

People really should rely more on their own instincts, rather than the
hyperbole of the industry.

I may die of cancer, but I will be healthy until that day.

Best thoughts and wishes.

John

Lifeisajourney
Posts: 217
Joined: Apr 2010

I was stage 3b/3 positive lymph nodes out of 30. Right ascending colon. I took 7 of 12 folfox. Last treatment 5/09. Taken off due to reaction. I felt fine the day I started chemo and have never been the same since, but I am alive. Still have numb feet/leg, hands and very tired. I can not advice you what to do, but there are consequences to chemo for some people. Stage 1 is different than 3, in fact my onc probably would have not recommended it. It is a very personal decision what to do, but do have a serious conversation with your onc. Just wanted to address your question of harm from chemo. I also did not have the rectum involvement which can possibly change an onc attitude about chemo. Good luck with your decision. Pat

Lifeisajourney
Posts: 217
Joined: Apr 2010

I was stage 3b/3 positive lymph nodes out of 30. Right ascending colon. I took 7 of 12 folfox. Last treatment 5/09. Taken off due to reaction. I felt fine the day I started chemo and have never been the same since, but I am alive. Still have numb feet/leg, hands and very tired. I can not advice you what to do, but there are consequences to chemo for some people. Stage 1 is different than 3, in fact my onc probably would have not recommended it. It is a very personal decision what to do, but do have a serious conversation with your onc. Just wanted to address your question of harm from chemo. I also did not have the rectum involvement which can possibly change an onc attitude about chemo. Good luck with your decision. Pat

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Not gonna tell ya what to do...simply my choice I took.....I don't know whats best, everyone has opinions and we all hope in the end that we did or are doing the right thing. Juicing worked very well for Emily and John and they have great extended periods of NED to show that...Chemo is simply another option, one that yes the higher percentage of people do take chemo treatments, but until there is actual proof that either juicing or chemo is one better than another is proven to me then I have to walk my own path. I did chemo, but yet I did re occur, met to lung, would juicing have prevented that, no way to tell, but juicing will help you in having the healthiest body system possible, whether you do chemo or not, diet is essential to good health and juicing is good health at its finest.
In any rate, I did chemo, Folfox as well, and did 10 rounds with OXY and the last 2 without...The neuropathy in my fingers is completely gone, the toes, well, the middle 3 on each foot are still numb. It has taken over 2 years of my life after chemo and my 1st surgery to get back to where I started to feel halfway normal again. Somethings never get back to normal, but the new normal is ok too...I learn to adapt pretty quickly to most everything. Am I sorry I did the Folfox ? absolutely not...would I do it again ? absolutely, and puke as much as I did last time, but, to be sick for 2 years and still be alive was it worth it? absolutely.......if you are contemplating quitting, I simply weighed out what my life would be like with my fingers numb, then my toes numb. Could I cope with that, absolutely.....I know you didn't get any sicker than I did with it, gag, puke, couldn't eat hardly squat, everything smelled awful that was great the day before treatment, the the week after treatment started to feel better on Sunday and by the end of the 2nd week, time to start chemo again, I was gonna do just one more, and I did this each time until one day it was over, and I had done everything possible to keep it at bay. Will I do it again if I have to, I think only now because I have a family and loved ones that want me to stick around as long as possible. I never want to look back and say, "Damn" I should've........and I won't..........May your choices be the best for you for they are yours to make........and you will make the right ones.....Love and Hope for you and yours, Buzz

djm_2010
Posts: 52
Joined: Dec 2010

Hello Tom, I think it's the oxilaplatin that's causing your side effects. I am also dx with stage 1 rectal cancer but i was given by my onc xelox chemo. That is xeloda tabs for 14 days and oxaplatin iv infusion as pod every 21 days. I had my 2nd dose last Jan 13 and after that infusion I really felt bad and can't hardly walk due to the neuropathy. I also had tremors all over and really felt weak. I just take it one day at a time,now feel better and just psyche myself again for the nxt dose. I was about to be given folfox before but my doctor gave me the option of the xelox which at least I won't be admitted at the hospital for 3 days ( I really don't want to see the hospital forever ) and I would have a life and be able to work since my meds are oral. It's your decision if you want to stop your chemo but remember if by chance the cancer comes back you would have a hard tome fighting it because you might be immune to the folfox therapy. Just hang on, pray and take one day at a time. I still have 6 cycles to go and am determined to fight this cancer because my kids are still small and needs me. The one thin I hate and get more depressed abbot is my colostomy bag. I really hate it but I want to live longer and have to deal with it. Take care and God Bless you! From dina

Anonymous user (not verified)

This comment has been removed by the Moderator

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Irrigation for Colostomates is just as popular here. It's not
for everyone, since there can be problems with infection, etc.,
but you can learn how common the practice is, by going to the
UOAA website and searching.

UOAA Forum

UOAA Colostomy Irrigation

Good luck; better health!

John

Anonymous user (not verified)

This comment has been removed by the Moderator

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

It goes to the debate are there Elephants hiding in a strawberry field. Do they hide that good? or Are they never there?

I went with Chemo to increase my chances that if there is a really small tumor that got missed, then the Chemo will kick its hiney!

I am on my second round of Cancer. I have Signet Ring Cell cancer. I want it out of me or the chances lowered for reoccurrence. Chemo sucks, but the alternative is worse. I am just about to round 8 FolFox. It was a hiney kicker this last round. I know I have a few more rounds of Chemo and am over the hump.

My recomendation, is to ask for all of the side effects. The headaches, nausea, diarrhea, tingling due to tempature, etc.... All of the side effects can be reduced with care and good attitude! Stay as happy as you can. When I get down I walk the dogs or visit a friend. That helps me a lot. I have a helpful and understanding wife and that is the other side of the coin. Sometimes she is more upset about the Chemo then I am.

Best Always, mike

beachinmom
Posts: 75
Joined: May 2008

Tom...

I read what you posted closely. I usually don't come to this board, but did tonight as i am up not being able to sleep. Anyway. I was in your shoes, so I had to respond.

A few things...

---You had rectal cancer which has a much higher reoccurrence rate.
---You had far fewer (5) than the recommended number of lymph nodes removed.
---Do you know if there was lymphatic invasion, or the grade of your tumor?
---Have you been tested for lynch, or was your tumor msi high?

This has to be your choice. But, for me, i went into chemo knowing i could stop if it got too bad, but i new i would do all it took because i didn't want any regrets.

So, I was stage 1, poorly diff tumor, lympho invasion. Surgeon suggested chemo, 1 onc did, 1 onc didn't...i chose to do FOLFOX, and completed 12. Tomorrow i will have another ct to see if continue being NED.

If i were you, i would find out from your onc the answers to the questions i gave you at the top, then discuss with them. Good luck in your decision.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I appreciate your input and will ask te right questions next Monday. Thank You.
Tom

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Tom,

I don't think I can add much more to what anyone else has said... and far be it from me to tell anyone what they should/shouldn't be doing. As much as we all get a lot of support from our fellow CSN'ers, knowing that they totally understand the frustrations/fears/joys that we all go through because of this thing called "cancer", not to mention, a lot of knowledge because we all can pool our knowledge that we've learned through experience... the bottom line is, no one... doctor or fellow CSN'er can know what is the absolute best for everyone. Why? Because although these cancers show a common thread/pattern of how they work... they can also be as different as night and day, even though it's the same kind of cancer. I swear that is what is the enigma of cancer... just when you think you have it's pattern figured out, it changes. Just as soon as it works the exact same way for 10 people, it changes for the 11th person and is totally different again for the 15th person. So what worked for Person #5 does absolutely nothing for Person #15.... and none of us know what our Number is or where we fall in the pattern.

It's actually quite an eye opener when the "specialist" doesn't really have any more of an idea than the person who made an educated guest here on the CSN forum. Now, don't get me wrong... doctors/oncologists/radiologists/specialists have all been trained and specialized in medicine, surgery, radiology and all things that modern medicine has to offer. But even with all that training and experience, they still can't tell you how you are going to react/respond, or what the chances are that a particular treatment is going to ultimately be successful or not.... no more than whether my opinion would be the successful decision for you (or me). If I insisted that you finish all 8 rounds, no matter what your side affects or potential long term affects were going to be... and it turns out that you never had another recurrence, then you would hail me as one very smart cookie and might even refer others to getting my opinion. Then again, if you followed that advice and a year later, were suffering from permanent nerve damage, lack of energy AND you ended up with a recurrence, I could end up being the idiot that, "Why did I ever listen to her?? What the heck was I thinking??" Sort of the luck of the draw, no?

But I totally understand you just wanting some guidance and if possible, a definitive answer as to what the heck is the best thing for you... and whether your choice will be doing more harm or more good? I so totally get it!!

Now, having said that, I would say, go with your gut... make a decision that you, and only you, are going to be totally comfortable with. If it ends up not being the perfect decision, then don't beat yourself up about it, and don't blame yourself that it may not have been the right choice (there's nothing saying that any choices will be the perfect choice). You'll just have to do what many, many of us do over and over again.... scream, have a little hissy fit, then brush ourselves off and attack again with a new plan.

Talk to your onc... get the pros/cons of his/her recommendation for the 8 rounds. Why 8? What about taking the Oxy out and just going with the 5FU (the oxy is probably what is making these treatments so tough for you)? Will 4 rounds be as effective as 8? As 6? As 5? IF a recurrence were to occur, then what would the next plan of action be? Just arm yourself with as much info as possible. Then go to an alternative practitioner and find out what they suggest in the way of alternative treatments. Do research on your own regarding nutrition, lifestyle changes, etc. Chances are you are going to toss some of them out as things you really don't think will work for you... then again, you may say, hey, "Why not?" or "Why not incorporate both?"

No one said this journey was going to be easy... or that there was any one right answer for everyone. You will hear people here get very excited about what they are doing for themselves... and want to convert everyone to it. But unfortunately, what works for one does not necessarily work for another... hence you have to find your own perfect fit.

Just know that, as you try and work this out... we are all here behind you, even if we don't have "Tom Answers" :)

Cheryl

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Cheryl,
Thanks so much for your 2 cents. Thats exactly why I posted the question I need help. What I have learned is that I am not going to get anyone who will tell me straight up do this or do that. But I am happy that there are people who care enough to respond to the question and offer their support. When I started visiting this site I was amazed at the personal relationships that develop through the struggles of diagnosis and treatment I am now starting to feel that myself and am very grateful for it. So that said I dont expect the answer from here but the support is overhelming as you well know. Thanks Cheryl
Tom

Subscribe to Comments for "Need advise on Chemo!"