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Help!! Stopping treatment

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

I have a question to all. What happens if you stop treatment after only a few treatments?Doesyou just go back to feeling normal or are there bad side effects from stopping? Does anyone know or has anyone quit? I am having a hard time with the side effects and I am currently cancer free. I also found out how expensive the treatments are and my Insurance is not sure they will pay. My doctor told me with the surgery alone I have a 80% servival rate. I had surgery on Feb 21 2010 and I had colon cancer Stage III B . My Doctor got all the cancer. Please help, I have to make a dicsion this week.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Hi,
I was also a 3B dx May 20, 2008. I also had pretty serious side effects with chemo- was hospitalized 3 times for a week each time- once I had a blood infection and was nueropenic, then my mouth so swollen I couldn't talk- he couldn't even get a tough depressor in there to look at it- they were concerned that the swelling would cut off my breathing. It didn't, thank God. The last time I was so dehydrated I kept fainting- hit the cabinet two timess on the way down, man my face was bruised. I was in a week for fluids- and actually continued on fluids the rest of my chemo time, 2 months. With each red flag my onc cut the oxil, the last hospitalization he said, "patty you don't have to hit me over the head with a brick, you are NOW done with oxil". At the time I was in isolation and felt like I had been hit by a car, but still managed to smile and whisper, "yippee". I still got 5FU- which was like a walk on the beach after oxil.

I also was told that I was cancer free after my resection. It was never told to me as though I was cured and see ya. My 6 months of chemo was MY best shot at no reoccurance, to get every one last bit of floating cancer cells done and outta me. That was my best chance at a full recovery. And I took it, and as sick as I was- and I have some permanent damage in my hands and feet due to neuropathy- I have no regrets and absolutely no doubt that I did the right thing. I am now 2 years cancer free.

There are others on the board with some different views. I would encourage you to face what you need to do for yourself (whatever that decision is) without fear or doubts, but with information and courage. Whatever you do, believe in it.

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

whatever decision you make you dont want to look back and say to yourself "what if?" also you have to believe with no shadow of doubt the decision you make is the correct one for you. your surgery can be a complete success however the worry is what if there are 'systemic cancer cells' still in your body? these systemic cells are what can become a metastasis so the logical protocol is to still have chemotherapy even after a successful surgery. the one organ that transports more blood then any other is the liver. this is where most the time these pesky cells attach and grow. you may also come to a conclusion the chemotherapy your taking now is causing irreversable consequences and stopping and or changing to something different is what's dictated for you. now there's no guarantee either way but additional knowledge is what will help you make this important decision.

ed

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I am sorry to hear about the difficulties you are having with your chemo program. This is a significant medical decision which should really be made in close consultation with your oncologist. What is his/her recommendation? If you are not comfortable with his/her recommendation you should be seeking another opinion from another qualified oncologist.

Chemo is regularly prescribed for advanced stages of Colon Cancer (stage 3 and 4) because it has been shown to improve survival. This, for many of the reasons that Ed mentions in his note.

If it is a question of side-effects, oncologists will normally alter the dose to reduce the problems. If it is a question of finances, you should fight it out with your insurance firm because it sounds like you are getting the standard medical care for your stage and disease.

You will get a wide variety of input and advice from this site. Much of it will be contradictory and you may find that it does not make the decision making process any easier.

In the end it is your decision. If you are committed to making it an informed one I would encourage you to work with your medical team to become better informed about the nature of your particular diagnosis, the reasons chemo is being prescribed, the options for reducing the side-effects, and the implications of discontinuing treatment.

Whatever you decide, I wish you continued health and wellness... Rob; in Vancouver

thready's picture
thready
Posts: 475
Joined: Sep 2009

Sue,
I am sorry that chemo is causing problems. Our group of drugs are particularly difficult, not easy at all.

I am a IIIB and did chemo-folfox, I wanted the best chance possible to beat this thing. I had problems, the neuropathy, nausea, chemo brain, etc-etc-etc. At the beginning of treatment #10 I had an allergic reaction to the Oxaliplatin and so the rest of the treatments were just 5fu and Leucovorian. The 5fu and leucovorian was the standard treatment until Oxaliplatin came along. You might ask your onc about just doing the 5fu and leucovorian, the oxaliplatin is the real budget buster (actually none of this stuff is cheap), and there are less side effects when you take away the oxaliplatin. Ask you doctor also how the change might affect your possible outcome.

One other thing, if you don't know you might want to ask your doctor also if you are getting folfox-4 or folfox-6. I had a second opinion with a doctor at the University Hospital here and he said that folfox-4 was very appropriate, that the clinical information did not show an advantage to folfox-6. He said it just caused more problems. I am not sure if all that is true but was his take on it anyway. BTW I did folfox-4 and still had plenty to deal with.

Now on to the money thing. I am wondering why your insurance won't pay for your treatments? If they don't or if they cut the amount they are/or should pay I would file a complaint with the insurance and your states insurance board. I know there are people hear that have had to claw their way through the insurance red tape to get things done but they have had success. There are also agencies and the drug companies themselves that can help, so please don't make the decision on economics alone, it just means you have to be your own advocate as you go through treatment. You need to think cure here and focus on the long term.

Ed is right in saying not matter what decision you make you have to just charge ahead and not look back, his advise is good for all of us. If you decide to stop chemo you might ask the advice of other here about alternative treatments. I did not do alternative treatments, but now am juicing, eating organic, following a Mediterranean type diet, take my vitamins-D and B's, and also trying to get my exercise done daily.

Please also know that no matter what you decide we are here for you.
Best wishes,
Jan

zenmonk
Posts: 198
Joined: Nov 2009

I have been off for a few months and still have terrible side effects. Nausea, neuropothy all that good stuff. everyone would be different I suppose but they still linger for me.

John23
Posts: 1832
Joined: Jan 2007

Ask your oncologist some questions, like:

1. Can you tell me -for certain- if I have single cancer cells in my body, floating around?
2. Can chemotherapy kill a -single- cancer cell.or cells that are not growing together?
3. Can you tell me if I take chemo, how many cancer cells it has killed, afterward?
4. Will taking chemotherapy guarantee me against future cancer?
5. Will you guarantee me that chemotherapy will not cause a second, different cancer?
6. Will you guarantee that chemo will not cause me to have any other permanent neurological damage?

I took the time to do so, with two different oncologists; Not one
answer was a "yes".

Both took the time to explain that chemotherapy works by killing any cell
that is growing faster than this surrounding cells. That is the reason they
have different chemicals for cancer cells that are growing in different places.

A colon cell grows at a different speed than a lung cell, so a colon cancer
cell that is growing faster than the cells in the colon, may be growing much
slower than the cells of a lung. The chemicals used to kill a colon cancer
won't do much once that colon cancer cell has taken residence in the lung.

I asked both a simple question.... if I had chemotherapy prior to having
colon cancer, as a preventative medicine, could have I avoided having
colon cancer? Both said no, that if it worked that easy, it'd be given to
everyone arbitrarily.

Taking chemotherapy as preventative medicine, really hasn't been proved
to do what some physicians are attempting to claim it will. The chemicals
simply weren't designed to work in some sort of a preventative mode.

Immunotherapy is the only means to work in a preventative mode, as
any vaccine would be. There is nothing on the market as yet, to work
preventively.

The bottom line, is that you should do what -you alone- feel is the
right thing to do. You have to let your instincts guide you, not ramblings
of industrial hype, and other's opinions.

If I did chemo and I am here three plus years later, they would attribute it to the chemo.
If I did chemo and am now dying anyway, they would say I gave it my best try.

If I did an alternative and am here three plus years later, they would attribute it to sheer luck.
If I did an alternative and am now dying, they would say I was foolish for not doing chemo.

It's the semantics; the prejudiced ideals of the medical community, that does
more to stifle progress, than to help those that need help.

There are other ways to help your body fight cancer, and there are
many right here, that are living proof of it.

Of course, that would be only our opinion...............

Don't be afraid of making your -own- choices, and setting your -own- destiny.

You were given survival instincts and clear intuition for your well-being at birth....
Use it.

Better health to you..

John

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

I would have gone to three, or four, or five, or a different state.
Not once did I hear anything even remotely close to that.

I doubt I would have believed it no matter who told me YES to any of those either but that's me. I agree, you usually can't go wrong when you follow your intuition and common sense. The only guarantee in life is that one day it will end by some method.
Oh, and taxes....

geotina's picture
geotina
Posts: 2070
Joined: Oct 2009

Have your doc's office get in touch with your insurance and settle the insurance issues. I have no idea why any health insurance would not pay for chemotherapy treatments. Truthfully, I have never heard of that. Now fighting for a treatment not specific to colorectal I have heard of but standard treatments, no. Our oncologist office handles all insurance issues, like the clerk said, "you have enough to deal with, I deal with insurance all day".

As far as stopping treatment, I would think long and hard about that one. Yes, the side effects are no walk in the park but cancer is no walk in the park. I would hate for you to quit, walk away from treatment thinking ok, all done and then in six months have a bad scan.

Your doctor said you are cancer free, personal opinion only, maybe he may be jumping the gun on that because it is very early in your journey. Maybe no evidence of active disease. Colorectal cancer has a very high recurrence rate so doing all you can now is probably in your best interest. I thought that surgery with no chemo for a Stage III was around 50%.

Anyway, good luck in whatever you decide to do. It is a very tough decision and one you alone can make.

Wishing you the best - Tina

thready's picture
thready
Posts: 475
Joined: Sep 2009

Hey Sue,
I was thinking about your situation, and I have question. Why do you have the make a decision this week? Can you take the treatments one at a time? Say, o.k I will do the next one and then see how it goes.

Also, I wanted you to know that after surgery I was not going to do chemo, but I was encouraged to come here and ask what everyone thought, well I got an ear full, respectfully they were all correct in their responses, so off to chemo I went. Then after treatment #6 I was going to be done. I had had it with all the side effects and the time and tole it was taking, but with the help of a persistent family I continued, and as of 4/14/10 all is history. So it can be done.

Take care,
Jan

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

First Sue, I'm not sure about that 80% with surgery alone for Stage IIIB. It's my understand the numbers were around 50% for Stage III with surgery alone. I was 58 at the time of dx with no other health issues, no daily meds, proper weight and that's what I was told.

The 80% sounds more like what chances of no recurrence should be WITH chemo. You might want to verify that.

What kind of insurance doesn't pay for chemo?

iluvmms's picture
iluvmms
Posts: 133
Joined: Aug 2009

I understand where you are coming from. I had a liver resection 6 weeks ago and they want me to do 6 months of chemo now. I hate the thought of it, but I would hate myself more if I didn't do everything possible to get rid of any extra cells floating around, so I guess I will do it. But it is very depressing! I hate the neuropothy. I still have problems from the first batch.

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Hi Diane,
I went for my first session yesterday. I had 3 bags of medication in the hospital and then
I am receiving medication from a unit around my waist. My medications are Oxaliplatin and Florouracil. I returned to work today. The only side effects so far are everything that I eat taste like tin, touching cold things and drinking anything cold is out. I drink water room temperature or warm. I am trying to eat more for I had lost 14 pounds between my surgeries and beginning chemotherapy. I 'll let you know how I feel after my disconnect tomorrow. Do symptoms increase with the number of sessions that you have? I will be going for treatment every two weeks. Thanks for the advice.
Peace and Blessings,
Karen

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

My oncologist also told me that I had an 80% with surgery alone. That was verified by patients that had declined chemo in a study, I believe, was done at the Uni of Utah. He worked there for years before coming here. The problem lies then, am I a 80% person or a 20% person? I didn't want to take the chance that I was a 20% person and still have cancer cells floating around. I voted for the chemo. Personally, and I'm NOT saying you should do the same thing, is talk to my onc about my horrible side effects and what can be done about that. Extend the infusion time or cut down the dosage? I'm also cancer free according to my CT scan, but I just can't trust that just yet. Maybe a few years after chemo, yes... right now, even though a CT can't pick up on a tumor or an enlarged lymph node, I just can't trust my body.

I'm also a III B. I do believe that my surgeon got all the cancer, but am I really sure? No. I'm not. I also had horrible side effects. Mostly from the oxaliplatin. The neuropathy was horrible. The swallowing, the jaw pain, the whole dang drug. I called it "Satan in a bag". I still think it is. I had a reaction to it on treatment #7. No more oxi for me and I don't miss it one bit. I still do the 5-FU and the leucovorin. They are a walk in the park compared to the oxi. I never was nauseous, but I did sleep for days on end. Had to wear gloves to get milk out of the fridge, to wear warm, wool socks so my feet didn't tingle and burn. It sucked. I'll be honest... it totally sucks to be on oxi.

I have 3 treatments left out of the 12 they prescribed me. I don't regret one thing about doing chemo. I think I did what was right for me. I'm in debt up to my ears because they gave me neulasta (an injection on my last day) to help keep my white blood cell count up. This shot was close to $6000 a shot. Yes, that is six THOUSAND dollars a shot. My insurance has been wonderful about paying, but my share of that shot was still over $600 a month. Not as much as my mortgage, but close. I'll be paying him for years, but I don't care, he doesn't care. It's my health, and he's totally fine with that. I have no fulfilled my out of pocket charges. My insurance will have to pay everything 100% except for office visits which are $20. I'm good with that. I have no idea what kind of insurance you have. The only one I can think of that would screw you like this is Blue Cross/Blue Shield. My onc told me they screw him every chance they get. My daughter has BC/BS. She regrets having them.

Whatever you decide, Sue, I wish you nothing but good health and happiness.

Love and Hugs,

Holly

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Sue,

I do not want you to be misinformed about the potential benefits of adjuvant chemotherapy for stage 3 survivors.

A recent study reviewed the results of 18 clinical trials involving over 20,000 stage 2 and 3 colon cancer patients. It found that those stage 3 patients who received chemo after surgery had a 10% improvement in overall survival. Adjuvant chemo also significantly reduced the possibility of an early recurrence.

From the report...
"Finally,these analyses clearly demonstrate that in untreated patients, the risk of recurrence is dominated by the early postsurgical period, in particular the first 2 years. The clear major benefit of adjuvant therapy is to significantly and meaningfully reduce this risk of early recurrence by approximately 40%."

http://www.medscape.com/viewarticle/587852
http://jco.ascopubs.org/cgi/content/full/27/6/872

It is not my intention to "bamboozle" you with statistics or "industry hype". Those of us who have chosen to receive chemotherapy, and there are many of us on this site, have done so because it is proven to significantly reduce recurrences and to improve overall survival. This is why it is the standard of care. Is it guaranteed? By no means! There are few guarantees in this world of cancer. To expect such from our doctors is not only unrealistic, it is to seriously misunderstand the very nature of this horrible disease.

Regrettably, I am not personally able to boast of a cure by any method. I am stage 4 and have experienced 2 recurrences in the past 6 years. Such is the nature of this beast in its advanced stages. I have however enjoyed two 2-year "recurrence free" periods after receiving adjuvant chemo.

I would again encourage you to discuss this matter with you medical team. While we here may have our own strong opinions about what does, or does not work , we are none of us physicians, oncologists, TCM practitioners, or otherwise qualified to render competent medical advice or recommendations. Sometimes we need to be reminded of this.

Your medical team are those who are most familiar with your own specific situation and those who are best qualified to support you in your decision making. If you do not trust them, or if you want another opinion, go to another cancer center. You owe it to yourself to get the best standard of care available.

Be well... Rob; in Vancouver

"Our intuitive instincts serve us best when they are supported by accurate information and competent advice."

geotina's picture
geotina
Posts: 2070
Joined: Oct 2009

Yes Rob is right, sigh, again. Please take the posts you read as our opinion or experience, which you asked for. That being said, you and your medical team are the best ones to discuss this thoroughly and the ultimate decision is yours to make. Hopefully, the opinions/experiences of the members of this board are of value to you.

Tina

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

Well I went to the onc yesterday and he said I was having a very bad reaction to the treatment, so he changed my treatment to Comptosar, same schedule every two weeks for 10 more treatments and I will still have the 5FU. He said I should do better with this, not as many bad side effects. Is anyone on this med? I would like some feed back if I can get it. Thank you all for you support and well wishes.

Sue

standbyme's picture
standbyme
Posts: 41
Joined: Sep 2008

Campostar,also known as irinotecan, combined with 5FU is folfiri. My husband had his 40th treatment of folfiri yesterday. Although everyone is different he has had no major side effects other then tiredness. Even that is not disabling, he just has to nap and take it easy. I hope you have the same luck with it he has.

Judy

munchkin07
Posts: 1
Joined: Sep 2008

I've been on Oxylplatin and am now on Camptosar...the Camptosar is much easier to tolerate as far as side effects. I do experience mouth sore, fatigue, and nausea, but the nausea is much less than with the Oxyl. Also no cold sensitivity or numbness like before.

Lifeisajourney
Posts: 217
Joined: Apr 2010

I only have my experience to tell you and everyone is different. I was stage3B, had surgery right away, port and started chemo Folfox, within 6 weeks. After 7th infusion, my body just couldn't do it anymore, put in hospital, had spinal tap, liver biopsy, got blood, everything came back ok, no visible sign of cancer, but I will alway worry about those 3 nodes out of 30 that were positive. Onc took me off chemo, said I was having worst reaction he had seen. I was intially, thankful, but still scared, he said I could not do same chemo, but if things happened, he had other options. It took about 6 months till I felt near normal, but other than chemo brain and neuro in feet/hands, I am doing fine. Dx 12/08, off chemo since 5/09. So far so good, but that is just my story. It is such a personal decision. I think ,should I be doing something else, but have to trust my oncol. I am down to 3 month visits with bloodwork and had last c scan 4/1/10. He said we may go to yearly scans, scares me to death, but scans cause issues too, good luck in whatever decision you make, we are all so different in our reactions. Pat

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