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Seeking advice....

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

At what point does the benefits of chemo/radiation outway the side effects??? Here's my story...Let me preface this by saying that I have been very fortunate up to this point, and I am greatful. Last December I was dx w/ crc and liver mets. Since then I have undergone 9 rounds of folfox and a recent round of 5fu w/lucevorin, a resection surgery on May 24th, and I started chemoradiation last week. Since all of this has started, I have seen my liver lesions disappear (after the first 3 cycles)and the primary tumor shrink from 2.5 to 1.8. After my resection and primary tumor removal, my surgeon told me that everything looked great. Absolutely no residual on my liver, my colon looked and felt great, the 11 lymph nodes that were removed all came back clean and I had 8 wks of no chemo, I felt wonderful!!!
Back to reality, I recently restarted chemo (4wks ago) I have had 2 cycles since then and I started radiation last week. I FEEL LIKE CRAP!!! WORSE THAN EVER... Here is my problem...I was told by the Rad Onc that my latest CT scan was clean. So why all this treatment? I know there could be microscopic cancer cells lurking about, but they are no assurances that this extra treatment will help me. I am confused, I am sure the oncologists want the best for me, but when is enough enuf??? Comments welcomed:o)

bsrules
Posts: 296
Joined: Mar 2004

Hello!!!

I don't have an answer for you but I wish my husband was where you are right now. What I think Bob would of done was talk to your Oncologist to ask them why the continuation of treatments. Get as much information about this before you stop treatments if that is what you want to do. It is totally your decision and no one elses!!!! Just make sure you get all the facts first!!!

I am very happy for you that your test results are coming back well!!!! Keep kicking this Monsters Butt!!!

Best Wishes!!

Sue

CAMaura
Posts: 719
Joined: Feb 2005

Hi there,
So sorry that you are feeling horribly. I would do a couple of things. First off, tell the doc just how poorly you feel. I haven't had radiation, but I hear of side effects.....there may be some meds to help with this. Secondly, I would take a look at your bloodwork. Your system may be having a hard time with handling all of the chemicals. I had to stop chemo because my liver was impacted by the Folfox.....but there are people who makle it thorugh and go on to have more. It just didn't work for me. Honour your feelings of how horrible you feel. If you don't get any recovery - if the body isn't rebounding at all - I would talk to you doc. The dosages might be changed; the timing of the chemo might be changed - any number of things.
Best of luck to you and know that you are incredibly strong to be undertaking this in the first place.
Cheers,
Maura

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

You raise some excellent questions, and thank goodness you had such an excellent response to your initial rounds of chemo.
If you have had successful surgical removal of your tumor, what is it that they are radiating? And all of the nodes were clear? I wonder if they are still worried, as you said, about microscopic cells, and it seems that there must have been some route of spread to get to liver mets? Can you ask your oncologist for additional time to review all your treatment plans and explain the rationale? Your doc should be able to actively help you weigh the benefits vs the side effects!
Sorry you feel like crap; hope you get some answers re: the treatment and help with the side effects ASAP. Keep us posted. Judy

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

hi Buster,

Your question is a good one. I asked a similar one myself when I was contemplating doing/not doing the advised adjuvant chemo.

Refresh your memory: I was Stage 3 lymph pos zero mets.

I was advised to do 5-FU. Before my feet hit the hospital floor I was researching the prospect of chemo with a wonderful book Questioning Chemo by Dr. Ralph Moss who was a former researcher with Memorial Sloan-Kettering. He has quite a resume. The book was an eye opener!! The chemo industry is just that--an industry. When chemo was first used the doctors promoting it were considered quacks! That's right. QUACKS!!

But the business proved too profitable to shush for too long so eventually the industry was successful in turning the tide of popular opinion. The sad fact is that there has been very little improvement over the years in treatment options. They want you to think so.

Colon cancer is 80% of the time dietary related. So why oh why oh why do the doctors not start there?? Well, that's a rhetorical question I know. What profit drives a doctor to tell you to buy a juicer and 25 pounds of carrots and have at it. You just may get healthier than ever and then they would be out of business pretty quick.

Instead they want to inject and zap and cut and then "manage" the fall-out that comes with that.

In my four years of remaining cancer free after choosing to only have the surgery to remove my tumor I have never been hospitalized for diarrhea or dehydration, I have not had to take medication for nausea nor do I suffer from neuropathy or mouth sores nor do I fear secondary cancers from radiation or the chance of luekemia from the chemo. Neither my heart nor my kidneys have suffered potential damage from chemo. My hair did not thin.

The Alternative route does not guarantee that my cancer will never come back. No one's treatment does. And like chemo, not everyone responds as well and heals. Some die. Same as chemo. But I have never felt better in my life and aside from the initial detoxing phase when I was fatigued and got pnuemonia, I never say "I feel like crap and worse than ever".

I say, start researching alternatives and empower yourself. If oncologists really truly want whats best for you then they would NOT serve donuts at the chemo clinics like the one I visited for a second opinion!! It was then and there that I knew my answer. If they couldn't even get a simple thing like nutrition right how then was I supposed to entrust my life to their hands???

I didn't.

As it is, my oncologist is juicing for HIS colon cancer. That, beyond anything, is my most satisfying moment--when my oncologist told me that "juicing works!" :-)

peace, emily who is thankful every single day that she did not do the chemo (5% of 5-FU patients die after the FIRST treatment).

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Hi Buster,
First up I am glad that at this point you are ca free. I had an aggressive st 3 colon tumour with six bad nodes. It was surgically removed and ct scans showed no evidence of mets,but both my surgeon and oncologist both felt that they were inevitible with the level of aggression and lymph involvement. I was in two minds about chemo because financially I couldn't really afford it and basically I was scared of the stuff. I discussed my fears with my oncologist , he actually waived his standard charge and bulk billed me and in response to my fears his advice was that my immune system couldn't fight the first cancer so why should any susequent ones be any different. I had 48 sessions of chemo 10 of 5fu leuc and 38 of 5fu levamisol after the first ten made me too sick. How do I feel now ,well I'm not sorry I had the chemo. Did it work ? I don't know ,what i do know is that once I made up my mind to follow my chosen path I made myself a promise that there would be no regrets and no what ifs. I had my cea tested last week and at 7 years and 7 mos it was less than 1 ,so far so good ,I have my scopes on a regular basis and have had a few polyps removed before they caused trouble. You asked for advice,I don't think that you can take advice in these circumstances . I and others have told you our stories so that you have all the information ,but it is a personal decision and my only real advice is whatever you choose ,no regrets,good luck Ron.

HisJoy's picture
HisJoy
Posts: 115
Joined: Feb 2005

Hi! I, too, was told that I had a very aggressive form of colon cancer. Was yours signet ring cell?? I hear that this is less than 1/10 of 1 percent of all colon cancers.

May I ask if you used diet as an alternative treatment to keep the cancer at bay? I am in chemo now, and the side effects have been minimal, but when I finish with this in Sept, I'd like to really adjust my diet....whole wheat, raw fruits and veggies - that kind of thing, but am interested in any other alternate-type of treatment to stay healthy.

Thanks!
Bonny Buffington (check out my webpage...my handle is Hisjoy in here)

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Ron:
I talked with the Rad/Onc today and he gave me some stats. CRC patients with CRC T3, which is what I have, have a 33% chance of the cancer returning. CRC patients with CRC T3 who opt for chemoradiation have a 15% chance of the cancer returning. That stat was enough to convince me to stay on the treatment.
Again, thanks for the kind words...
Buster

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

enough is when you say enough..there seem to be as many answers out there as there are practioners; it eventually boils down to quality VS quantity, I guess..Emily makes her point well, so do the others. so you are left with you..as Ron clearly states, it is ultimately your decision and your consequences. I really don't think anyone has the answer, but a 2nd opinion might be in order-maybe from a dr that is located in a clinic that specializes in complimentary/Alternative medicine? You might want to do some reading on Adjuvant therapy , survival rates, etc-they have a lot of very readable-(not science speak) material at the life Extension site-(www.lef.org) The section on Adjuvant therapy is esp. good, and might help you in making your decision. If nothing else, you will probably wonder why your doctor isn't explaining all the choices.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

here's the specific link:
http://search.lef.org/src-cgi-bin/MsmGo.exe?grab_id=23&EXTRA_ARG=&CFGNAME=MssFind%2Ecfg&host_id=42&page_id=16384256&query=cancer+adjuvant+therapy&hiword=adjuvant+therapy+cancer+

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Thanks Bud for that very interesting site.

Buster. I guess at the end of the day the choice is yours. Just as there are many here who have chosen different pathways you need to I guess weigh up all the information you can get out of your oncologist then form an opinion as to the best course ...for you. The choices are there and have never been easy for any of us but ultimately you are the one in control of your body. Whichever direction you take understand that we know the feeling only too well.
All the best from oz, kanga n Jen

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