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Afraid

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

I know I have posted several messages and I am new to all of this, but some of the discussions and responses I have read really have made me very afraid of what I am facing.

Again, I have Stage II colon cancer with no lymph node involvement no spreading according to my path report dated July 06. I was told by my surgeon and my ono doctor that FLOFOX Regime of Oxiplatin, Lecvoron and 5FU every other week for 6 months would be a good idea for insurance, precautionary and survival rate so I agreed to chemo and start my treatment on 18 August. Finished my third treatment on 15 Sept.

Some of the discussions and chats have indicated that people with my exact cancer I have gotten additional tumors in the lungs, breast, bladder, etc and that additional cancer has shown up during chemo and right after chemo.

I really need TRUE stories of indivudals that have my exact cancer and chemo regime and to let me know what has happened so far.

I pray to God every day to give me strength to get through this because I am sooo afraid.

Thank you for taking the time to read this.

jams67's picture
jams67
Posts: 927
Joined: May 2006

Sounds like you have God in your corner. That is a big start on having less fear. One of the things that helped me most was realizing that we as humans are all terminal. There are many people who are healthy who will die today, and have had no warning. We all have to be prepared. Just use the times you feel good to enjoy life as much as you can everyday. jams

AuthorUnknown
Posts: 1560
Joined: May 2006

Hello,

I understand your fear. I don't want to scare you more. My opinion about chemo is that it can help to cure cancer but it can also kiil by causing deadly side effects, secondary cancer, etc. Cancer may still come back even with the chemo.

Here is my story. I am a caregiver for my mother 68 years old who was diagnosed with II stage colon cancer in February of this year. She has the alzheimers type dimentia and so I, as her conservator, am making all medical decisions for her. Tumor was resected, lymph nodes were not affected, tumor spread to the bladder because of the proximity to it, the bladder was resected and restructured.

She recovered quite nicely from the surgery. The oncologist told us that there is only 10% more chance of not recurring if she does chemo.

I decided to give her a chance. She took chemo in the form of the oral pill Xeloda. Her liver functions were immediately very highly elevated. So, from the very beginning the threat of liver failure came up. She waited for some time before continiung chemo. After 2nd round, liver functions were up again, her whole health was in the terrible condition, it affected her brain, she was getting increasingly weak. And then she has got very severe pneumonia as the result of chemo. She almost died from this pneumonia. She also had acute renal failure which was put under control.

After all this, I have stopped chemo for my mother. In my mind, it is not worth it especially for the II stage. It can cure cancer but it can create secondary cancer, it can create side effects that can kill, and it causes a lot of unnecessary suffering.

My mother has recovered and feels fine again. Her brain functions are back to the level they were before chemo, meaning that she is lucid again. We are now in the "wait and see" mode.

When cancer happens, it means that something is really wrong in the body and one needs to look at the root of the problem and not just try to fix by making patches. Diet is in the root of the problem.

I urge both of you to look into alternative methods of treating cancer, of looking into changing the diet. There are couple of people on this board who cured themselves with alternative methods after having III and even IV stage.

Please look into finding a good naturopathic doctor.

I urge you to look into these 2 books: "Beating cancer with nutrition" by Patrick Quillan and "Outsmart your cancer" by Tanya Harter Pierce.

I hope it helps. You can e-mail me any time if you want to talk more about it.

Best wishes,

Eleonora

Sunriver's picture
Sunriver
Posts: 50
Joined: Sep 2006

Hi Nudgie,

I have the same thing that you have - Stage 2 with no lymph. You are a little ahead of me as my chemo doesn't start until late in October. Although there are no guarentees we have a good chance of getting rid of the cancer once and for all.

I have started taking a multi vitamin, B-complex, Glutamine and protine powder as I have read that they help with overall health and chemo. I have been walking and I play to start exercising on a regular basis soon. Everything I have read indicates that exercise is a bit help.

I would be happy to let you know how I am doing and I would be interested in how you are doing. As I am sure you have read there a a lot of folks with a much worse prognosis than us and many of them are doing well.

All the best...Mark

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Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi Nudgie -

You have to take my input in context - I am Stage IV, though currently NED (no evidence of disease). But Stage IV is a very different animal from your Stage II disease - I mean there isn't any Stage V!.

As Stage II I know there are many issues regarding whether or not to do the chemo or not - other Stage II folks can chime in on their decisions. For me, there was really no choice and chemo was a good choice. Not fun, but not terrible. I've tried to make lifestyle changes but I don't think those alone would have gotten rid of a biopsied liver met - which I had and which is no longer present.

So, your situation is scary. But in the CRC world it is pretty good and 5FU/Xeloda + oxaliplatin has a pretty good track record. The oxaliplatin is more likely to cause negative side effects than the 5FU. And if it does, you are in a pretty good position. You can give up the oxaliplatin if side effects warrant it and feel pretty safe in your decision, being Stage II. And, please note, that while oxaliplatin is not exactly a fun drug, the negative side effects are not always hugely bad. My blood counts never dropped at all, for example. I had cold sensitivity, peripheral neuropathy for a few days after infusion, hideous numbness in the infususion arm (no port) for a couple of days after treatment, vague nausea well controlled by Compazine, but no long term effects. So chemo will not necessarily be a hideous experience for you.

All that said, statistically (I ignore stats, by the way) you will have a better outcome than us Stage IV folks, but because of your overall better prognosis being Stage II, you can afford to try chemo and then back off if it no longer seems right.

Take care (and I know how afraid you are)
Betsy

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Nudgie:

A fellow Stage II here, uh, make that a girl stage II :) Dx Dec 05, surgery and 6 months FOLFOX. Been there, done that, now NED and living healthier than ever, and happier, knowing that I've beaten the beast once.

Fear never dominated my thinking. I figure that if my time is up in the cosmic scheme of things then there is nothing I can do about it. But for every day I live to see another day, rain or shine, I will not spend more than 3 seconds thinking about death and dying. I try to fill every day with positive thinking, lots of fresh fruits and veggies and make sure that I do something nice for someone everyday to refill my karma bowl. There are lots of good survival stories out there and equal number of unfortunate storis too. The thing to remember is that each individual is different, what happens to others don't necessarily apply to you.

You're doing the right thing by adopting an aggressive course of treatment. The chemo will do a lot to nail those odd stray cancer cells which might lurked inside of your body after surgery. And being a stage II, the odds are really great on your side. Don't don't worry yourself sick, for you can weaken your immunity with worrying, and your immunity is the one thing that protects you around the clock.

Best of luck with the rest of your chemo! Nail those little creepy crawlies hard!

Cheers,
Ying

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello Nudgie,

I'm guessing just about every survivor experiences fear of more cancer and worse, even death. Sadly many actually do experience these. My mom is a four time, stage IV survivor and she says that she can't help but wait for the other shoe to drop, meaning more cancer. Now that I'm living through my own stage III colon cancer and HNPCC diagnosis I better understand her feelings and yours.

Fear can actually be a healthy emotion if it triggers the "fight" response. Maybe you could use your fear to inspire you to fight hard, to be confident that you are doing the right thing in terms of treatment, of which only you, your family and your doctors can decide, and to look forward to everyday that you can wake up and live your life, even if it is with cancer. In so doing perhaps you might discover something positive during your journey.

I'm learning to appreciate that the time and money rat race I was in before my diagnosis is far less important than my family and friends, and thus I'm learning how good it feels to open my heart and my mind to what is truly important in life. Recently during a rough time with my second round of chemo that landed me in the hospital my dearest friend reminded me to look for the silver linings of everything I'm going through...I hate my cancer, but I'm happy to discover new silver linings everyday by having faith, being confident, staying positive and being open to the joys of living. I will try hard to not waste another minute!

Something else to think about - cancer and chemo treats everyone differently so try not to get too tangled up by scary stories of tough battles. It sounds like you have a good prognosis at stage II with chemo, but maybe you could talk to your onc about when you should get a PET scan. Perhaps he/she might schedule one early if it will relieve anxiety.

I hope this helps...sending you my best thoughts and prayers.

Katie

Patrusha
Posts: 488
Joined: Jun 2006

Geez, Nudgie, hope I didn't add to your distress with my talk about finding out I was DPD Enzyme deficient. You've had three treatments so you are definitely not deficient or you'd know by now. Is the chemo going well so far? Have your side effects been manageable?

I have your exact stage of cancer and chemo regimen. Had the surgery, got it all, no lymph nodes involved... but they highly recommended the chemo because of my age (49) and tumor characteristics. Did you know that until the last couple of years they didn't even "offer" chemo for Stage II? This is a more recent development because out of 100 people who did surgery alone, about 11 of them would have a recurrence. (I am citing statistics, again, for stage II folks with no lymph node involvement). So, going by that, you already have an 89% percent chance of beating this thing just having had the surgery.

The debate on chemo for Stage II is fast and furious. That's why I am in a study to see if people with our exact stage of the beast do better than those who just have surgery alone. OK. So if I had an 89% chance of beating it with the surgery alone, why am I going the chemical route? Cuz I've been convinced that perhaps my odds will increase to 100%! Will I make myself sicker and cause myself new cancers by taking the chemo? I guess there are arguments on both sides but as far as I know, there is no valid research (that dreaded R word) to show conclusively that chemo causes more cancer, at least I haven't found the studies that would indicate that.

For myself, I feel comfortable that I will do myself more good than harm with the chemo and so I'm going for it! If I have to stop it along the way because of my DPD enzme deficiency or any other reason, so be it. Then I will do as I do now: pray and thank God for protecting me and hope I am in that 89% who would make it anyway without the chemo. I'm also seeing a naturpathic doctor tomorrow to see what I can do to help my body handle the chemo and keep my immune system strong throughought this ordeal.

And WHAT IF...... thoughts of liver and lung mets swim through my head, too, on a daily basis. I just put them aside as best as I can and remember that I've met many people here who had had those things, dealt with them and are presently NED. If that happens to me, I'll deal with it then. Until then, as me dear old departed mother used to say, "don't borrow trouble from tomorrow for today has enough of its own."

Keep your chin up! Hugs...

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