Made my decision.....

MJay · December 2004

Hi all~ Thanks so much for all of your input. There is nothing like getting advice and words of encouragement from those who have walked the walk.
My pain and nausea were so bad last night that
I finally decided that I am going to stop chemo treatments. I am going to get all my tests done to see if there is anything anywhere and then make my decisions from there. If they told me they found more I would maybe decide to stay on treatment or I would look for something else...maybe something more natural. I don't know... haven't decided that far.

Last night the pains and nausea were so bad that I just said, "That's it." I was told this 5 FU/ leuko is supposed to be well tolerated. I have so many side effects I can't possibly list them all unless I carry a list in my pocket and write them down as they come. I was told that the effects would NOT be cumulative... mine definitely are. This round is so much worse than the last. I can only imagine what the next round will be like.

I have tons of help at home. My hubby has been carrying the load for 8 months now. When I told him my decision last night he supported me. He didn't even have the look in his eye that he gave me after the first treatment when I said I wasn't going back. Then his mouth said, "It is your body...." but his eyes said, "Like hell!" This time he just gave me a big hug and kiss and said I will support you 100%.

I don't know if I am making the right decision. Time will only tell. My instincts tell me this is right for me. I am at peace where as before I felt I had this big heavy load hanging over my head. I would have liked to have finished so I could have "checked all the blocks" but this time I can't. And sometimes, "checking all the blocks" isn't the best thing to do.

Cancer is scary. Its natural to want to do everything in your power to fight it. If someone could guarantee that it wouldn't come back if I did the last two treatments, I would try my best to get through it. (Even though I know in my heart I will land in the hospital if I do). But this whole thing is one big crap shoot. I have to put my faith in myself and the higher powers that be and move on.

I will of course keep everyone posted. I can't live without this site. It has been such a tremendous help!!!

MJay

kerry · December 2004

MJay,

I too was on 5FU/Leuk and CPT-11. They made me sicker than I have ever been in my life. I continued and finished my treatment. I had abdominal pains, high liver enzymes, fever of 102, chills, gas - you name it, I had it. Nausea out the gazoo - literally. I know your decision has been made with much thought, I also said that after going through all of that, if it ever came back I was NOT going to take more chemo.

Well, it came back on me. Guess what, I am taking more chemo - but a different mix. Instead of 5FU/Leuk, they have put me on pills - Xeloda. I have less nausea, less diahrrea, don't feel quite so yucky (don't get me wrong, I do have yucky days). Maybe you should check with your doc. and see what he/she says.

We will all stand by your decision and be here for you all the way. I just wanted to give you some of my thoughts. I don't know what stage you were diagnosed, your age, etc. I just know that I want to put up the best fight I can.

Kerry

P.S. Read Andrea's post "A Christmas Gift". She has a wonderful message about "The Strength of the Human Spirit". It really hit home with me.

2bhealed · December 2004

hi MJay,

Cancer is scary..but you know the chemo scared me more than the cancer!

According to "Questioning Chemo" by Dr. Ralph Moss 5% of patients receiving 5-FU/Leucovorin don't live past the first treatment!! The cancer didn't kill them the chemo did! I had a feeling I would fall into that 5%. I'm allergic to Tylenol for crying out loud! No doctor I ever went to has heard of anyone being allergic to Tylenol! I get that comment every time. "What?? You're allergic to tylenol??? That's rare."

When stopping your chemo it's not as if you have to stop "treatments" for cancer. There are plenty of things you can do that are beneficial to killing cancer cells.....such as:

medicinal mushrooms--maitake fractionated mushrooms

anti-oxidants--blueberries for instance--the more colorful the better
vitamins and supplements
massage (talk about relaxing)
digestive enzymes

Have you read Beating Cancer With Nutrition by Patrick Quillin?

Your treatments could be as close as your vitamin cupboard and with no side effects either......except increased health and wellness.

Your body was telling you it was time. You are honoring it and I applaud you for that.

I hope you bounce back quickly and that the side effects are not long term.

peace, emily who has never regretted her decision

fedester · December 2004

mj,
good luck with your decision,you have a great husband by your side. like em said there are many other options out there. we are here for you 24/7.
all the best
bruce

Moesimo · December 2004

I support your decision.I was so sick from chemo that i ended up in the hosp. and on IV fluids for 3 weeks. I wanted to continue, but was told the effects are cummulative and I would get sicker and that some people die from chemo. It has been 18 mos. since my surgery and so far no return of the cancer. My CEA yesterday was 1.7. I will have a CT and colonscopy next week and surgery on 1/14 for a permanent colostomy. I am sooo scared. I keep telling myself,it could be worse.

Good luck with your decision and keep us posted.

Maureen

Moesimo · December 2004

I support your decision.I was so sick from chemo that i ended up in the hosp. and on IV fluids for 3 weeks. I wanted to continue, but was told the effects are cummulative and I would get sicker and that some people die from chemo. It has been 18 mos. since my surgery and so far no return of the cancer. My CEA yesterday was 1.7. I will have a CT and colonscopy next week and surgery on 1/14 for a permanent colostomy. I am sooo scared. I keep telling myself,it could be worse.

Good luck with your decision and keep us posted.

Maureen

MJay · December 2004

Moesimo said:
I support your decision.I was so sick from chemo that i ended up in the hosp. and on IV fluids for 3 weeks. I wanted to continue, but was told the effects are cummulative and I would get sicker and that some people die from chemo. It has been 18 mos. since my surgery and so far no return of the cancer. My CEA yesterday was 1.7. I will have a CT and colonscopy next week and surgery on 1/14 for a permanent colostomy. I am sooo scared. I keep telling myself,it could be worse.

Good luck with your decision and keep us posted.

Maureen

Maureen-- I think I asked you this before... what are you most scared of?? The surgery or life with a colostomy?

I never batted my eye at the surgery... I simply absolutely positively did not want the colostomy. I am glad I did not know what the surgery was going to be like.. I would've ran for the hills. BUT... and this is a big BUT (hah! pardon the pun)... I had so much more done than just the colostomy surgery. And looking back the other parts of the surgery were worse than the removal of the rectum/anus and thus the colostomy.

The colostomy is not the big deal I was making it out to be. You just adapt. If you adapted to cancer then you can adapt to a bag on your belly. It isn't fun.... I will never delude you to that... but it is do-able. I am willing to answer any and all questions.... so many people have seen my private parts that I no longer have much modesty.

IF you want to talk in person I will even call you. It is scary... any change is and this is no small change. And you are right... it could be worse. But don't you get sick of saying that all the time? I sure do. But I keep saying it and saying it and saying it.

MJ

MJay · December 2004

2bhealed said:
hi MJay,

Cancer is scary..but you know the chemo scared me more than the cancer!

According to "Questioning Chemo" by Dr. Ralph Moss 5% of patients receiving 5-FU/Leucovorin don't live past the first treatment!! The cancer didn't kill them the chemo did! I had a feeling I would fall into that 5%. I'm allergic to Tylenol for crying out loud! No doctor I ever went to has heard of anyone being allergic to Tylenol! I get that comment every time. "What?? You're allergic to tylenol??? That's rare."

When stopping your chemo it's not as if you have to stop "treatments" for cancer. There are plenty of things you can do that are beneficial to killing cancer cells.....such as:

medicinal mushrooms--maitake fractionated mushrooms

anti-oxidants--blueberries for instance--the more colorful the better
vitamins and supplements
massage (talk about relaxing)
digestive enzymes

Have you read Beating Cancer With Nutrition by Patrick Quillin?

Your treatments could be as close as your vitamin cupboard and with no side effects either......except increased health and wellness.

Your body was telling you it was time. You are honoring it and I applaud you for that.

I hope you bounce back quickly and that the side effects are not long term.

peace, emily who has never regretted her decision

Thanks Em. I have been leaning to tackling this disease the Au Naturel way. A long time ago when I was diagnosed with clinical depression I tried the various pharmacuticals without any luck. I would either throw them up or they would have the opposite affect and I would have anxiety attacks worse than before. So I opted to try St. Johns Wort. It worked fabulous for me.

I am listening to my body again and was thinking maybe for me the answer is in the more natural kind of things. So... thank you for your suggestion of the book. I am going to go get it.

Have you read "Patient Heal Thyself" by Jordan Rubin? Was wondering your thoughts on that book?

Mjay

andreae · December 2004

Dear MJay,

Just wanted to put in my two cents. Cancer can kill you. Chemotherapy can just as readily kill you. The diarrhea and vomiting can result in dehydration, febrile neutropenia, low platelets, anemia, secondary malignancies caused by chemotherapy, anaphylactic shock... My father nearly died from his chemo on many seperate occasions - infection, kidney failure, ect. A friend of mine passed away from leukemia last spring. The leukemia was a DIRECT result from his chemotherapy regime. He was in remission from his primary cancer, Ewing's sarcoma. Your fears are well-fouded, chemo is dangerous. Despite knowing and acknowledgeing all the facts, I have been on chemotherapy non-stop for two years (5FU/leucovorin, CPT-11/5FU/leucovorin, oxaliplatin/Xeloda). I firmly believe in randomized, double-blind trials. If the trials say a benefit is shown, I'll do it. But that's me - the hard core scientist. Follow your heart and your body, they will know what to do. Good luck and keep us posted.

Lots of love,
Andrea

grandma047 · December 2004

MJay, I think you made a wise choice. I have so many side effects still from the chemo, radiation and surgery, that they won't even start my chemo yet. My bottom still isn't healed after 7 months. Chemo doctor won't do anything until I'm healed. Sometimes, I think that all these side effects are happening for a reason. Maybe chemo again is not in my future. It's a hard choice and one I haven't completely made myself yet. I admire your strength in your decision. Just hang tough and I know you'll beat this monster.
I'll say a prayer for you.
Love and prayers, Judy(grandma047)

Moesimo · December 2004

MJay said:
Maureen-- I think I asked you this before... what are you most scared of?? The surgery or life with a colostomy?

I never batted my eye at the surgery... I simply absolutely positively did not want the colostomy. I am glad I did not know what the surgery was going to be like.. I would've ran for the hills. BUT... and this is a big BUT (hah! pardon the pun)... I had so much more done than just the colostomy surgery. And looking back the other parts of the surgery were worse than the removal of the rectum/anus and thus the colostomy.

The colostomy is not the big deal I was making it out to be. You just adapt. If you adapted to cancer then you can adapt to a bag on your belly. It isn't fun.... I will never delude you to that... but it is do-able. I am willing to answer any and all questions.... so many people have seen my private parts that I no longer have much modesty.

IF you want to talk in person I will even call you. It is scary... any change is and this is no small change. And you are right... it could be worse. But don't you get sick of saying that all the time? I sure do. But I keep saying it and saying it and saying it.

MJ

MJay,
I sent you an email through this site.
Maureen

ron50 · December 2004

Hi MJay,
i was dx st 3 6 lymphs pos and a "frightfully" aggressive tumour. After the removal of the ca I was visited by an oncologist who has become a good friend . We discussed the pro's and cons of chemo and I made the point that I thought my immune system could handle any remaining ca cells . He looked me in the eye and said"well it didn't last time". So I had 5Fu and leucovorin For two months. It came very close to killing me due to bowel osmossis and impending renal failure. I was given the option of giving up and stopping or trying something else. I went onto 5fu and levamisol for the remaining 38 weekly sessions. I suffered badly through them and on several occassions was given the option of stopping. I chose to continue. On jan21st 2005 it will be my 7th anniversary clear and free of ca. If you think that I am being critical of your decision to quit chemo you would be quite wrong. I support you fully in your decision. I didn't stay on chemo for the sake of just doing it ,I did it because i chose that path and I truly believed it would work. Have faith In your choice have no doubts and no regrets, good luck and good health,Ron.

Moesimo · December 2004

MJay, I just thought of something else.
When I was told to stop my chemo by 2 docs, I asked the surgeon what if my cancer came back. He said, "If I were you, I would stop the chemo and not look back. If the cancer comes back, you have to think that you made the BEST DECISION at that time."
Maureen

spongebob · December 2004

MJay -

I am sure you feel much better now that you have finally made your decision. I'm sure you feel empowered - and you should.

We know our bodies better than any doctor or piece of machinery or lab test. We know when there's something wrong and we know when to quit doing some things - like chemo.

It is just as important to have life in your years as it is to have years in your life.

You made the decision that your body told you to make - that was the right decision for you. Although I'm not certain that treating your cancer in the nude (au naturel as you mentioned to Emily) will help - although your husband probably won't mind!

Seriously, though, there are many holistic ways to treat your cancer and not mess with chemo. You're on the right path and with Emily onyour side, you have a perfect mentor!

Be well.

- SpongeBob

aspaysia · December 2004

I just polished off a big honking piece of Belgian chocolate noisette (hazelnuts to all the French impaired) It was the last of my edible Christmas gifts. I felt no guilt although some people think that is part of the fun. Back in the olden days when I was in high school my best friend and I decided that chocolate did absolutely no harm. Only thinking it was bad for you was harmful.
If you believe in the course you are taking reguarding chemo, it will work. Have faith. And eat some Cote D'or while you are at it.
Your naughty friend, Aspaysia

2bhealed · December 2004

MJay said:
Thanks Em. I have been leaning to tackling this disease the Au Naturel way. A long time ago when I was diagnosed with clinical depression I tried the various pharmacuticals without any luck. I would either throw them up or they would have the opposite affect and I would have anxiety attacks worse than before. So I opted to try St. Johns Wort. It worked fabulous for me.

I am listening to my body again and was thinking maybe for me the answer is in the more natural kind of things. So... thank you for your suggestion of the book. I am going to go get it.

Have you read "Patient Heal Thyself" by Jordan Rubin? Was wondering your thoughts on that book?

Mjay

Hey MJay,

No I have not read that book. Do you recommend it? I can borrow it from my chiropractor. I have his The Makers Diet which I think has THE BEST info regarding intestinal health that I have read yet. Even if you don't follow the diet plan, he gives the reader a wealth of knowledge in a way that no one else had for me.

I really agonized over my decision at the beginning only because I knew I would get a lot of flack from folks. And I did from some....but those closest to me see the bennies of going this way....especially those who knew what my sister went through.

Every body responds so differently. I have friends who never even got nauseous during pregnancy and I barely got my head off the toilet for about 7 months of the 9 during my first baby. Ok, I know this is so much different, but my point is physiology is unique to each person and your body is telling you enough!! The important thing is that you are actually listening. So often we ignore what our body it telling us....ie...it's constipated (NOT a normal state I don't care what doctors say we should have 3 BM's a day), or there is a persistent pain, or blood in our poop, and we just ignore the signs. Then ooops it's too late a tumor is there. dang.

Keep me posted. I can send you my protocol if you have a mac. (appleworks)

peace, emily who should have listened when her hinder was going in spasms

Kanort · December 2004

Dear MJay,

I'm sorry that your chemo regimen has caused so many severe side effects. Please know that we support your decision. Emily is a great resource for the natural approach.

Keep us posted on your progress.

Kay

nanuk · December 2004

It's nice to see someone take charge of their treatment and have the courage of their conviction regardless of the choice. What's maddening to me is that I know people on both sides of the fence, and inbetween regarding their adherence to conventional/alternative tx; there are successes and failures in all approaches.
What remains clearis that no one can make the choice for us-it is ours and ours alone..it's just possible that a cancer patient will discover the "CURE" before the establishment does..a pro-active patient has much more at stake than their practitioners. Please share your progress. Bud

taraHK · December 2004

Hi MJay,
Of course I fully support you. I think it is vitally important to feel and know that we are the masters of our own bodies and medical decisions. And, as others have said, nobody else knows your body like you do. Thinking of you.
Tara

jeanl · December 2004

MJay
I'm right where you are - dx. Dec. 31 with stage 3C and have had chemo since March - two different protocols and finally this month said that's it. Had all the problems associated with the meds. including three hospitalizations. As I am an oncology nurse it has been a tough decision but after 29,820 mg. of 5 Fu over the last nine months am done. We have to listen to ourselves and will live with our decisions. May 2005 be kind to us all and plan on enjoying this New Years as can't remeber much of last year. Jean

scouty · December 2004

MJay,

I too made that very difficult decision to stop chemo. I did after 8 months just this past November. I found a local Naturopathic Doctor that I trusted and let her tell me how to fight this beast without the chemo side effects. I juice twice a day and am eating really good foods (amazingly enough, alot of the foods that I love are the exact same ones that my body needs). I take about 20 pills daily (mostly with meals). Some are to rid my body of toxins, others to built up my immune system, and others to help my blood (chemo gave me high blood pressure). The first month was really interesting. I was real tired and smelled worse then my dog. I was detoxing big time. I still smell bad but not as bad as before. Everyday, I feel a little better and the chemo side effects are waning.

I go back in for test January 14th and will be a basket case by then. I am really scared. If this approach is not working, I don't know what I will do next but I do know that I will not go back on chemo like I was before.

Find someone to help you come up with your regime. That is key. What I do is for my particular situation (Stage IV with mets to liver and lungs and very high blood pressure).

The most amazing thing about my decision was about a month after I stopped the chemo, my 80 year old Dad had a mild stroke and we found out the week before Christmas he needed assisted living. My older sister and I flew into action and found a great place, fixed up his suite so it was almost like his house with all his toys, and got him moved in 4 days. We are still going through the transition phases with him but he is doing remarkably well. I would never have been able to do what I did for him had I still been on chemo. It was the best Christmas I have ever had!!!!!! We have a date tomorrow to watch North Carolina play in a football bowl game and he is very excited.

Continue to listen to your body, heart and soul. I think the thing I am enjoying the most now that I have been off chemo almost 2 months is getting my brain back. It is attached to my soul and I missed it terribly.

Let me know if you have any questions and I will try to help anyway I can. Emily helped me immensely (and still does). She is my hero!!!!!

Lisa P.

Made my decision.....

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