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Old 07-26-2007, 09:22 PM   #16
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Re: Decided on NO chemo, any suggestions

JanMarie: loved that story!! I do thank you for your response. and thank you for understanding my decision. I have taken slack for it family and friends. but I just tell them either respect my decision or dont discuss it with me. No more said. I will also look for book you mentioned. I am willing to read it and find whatever I can for those of us doing the same as I.
Thank you for your prayers too. I do appreciate it. No matter what decisions we make in life, The Lord knows when he wants to see us.

 
Old 07-26-2007, 09:38 PM   #17
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Re: Decided on NO chemo, any suggestions

I met a woman recently who told me about a supplement called Poly-MVA. (It's supposed to boost your immune system). She told me that two years ago she was diagnosed with stage !V lung cancer. Her doctor treated her with a chemo pill for symptoms only since he didn't feel there was any hope. In about 2 or 3 months she got the good news that her lung scan was clear.She takes this supplement every day. If you have any health oriented drugstores in your town they should carry it. She believes that this (along with prayer) has caused her to go in remission. My prayers and best wishes go out to you.

 
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Old 07-27-2007, 09:54 AM   #18
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Re: Decided on NO chemo, any suggestions

Hi Turbo,

Your not alone, I also decided no chemo. I have stage lV cancer of unknown primary with 7cm metastasis on lung, other mets confirmed on kidney, spine, also think there are a couple of others but am not bothering to get tested. I came to this board because of the lung met and I needed a place to talk and the people here are wonderful.

I have known about the cancer for the past year, and I am still alive! I try to eat healthy foods, no processed stuff, sleep when I need to sleep.
The other thing I do is perhaps a little odd to most and that is I do not regard the cancer as some sort of monster I need to kill. The cancer is a growth of my own cells which have got screwed up in their programming. How can I regard my own cells as a monster - I can't. So I talk to them, try to heal them, so correct the corrupted DNA via mind. Perhaps now you will think I am a little crazy, thats fine, but I truly believe it is this and my faith in God which has kept me alive this past year and so far Im looking like I will last a bit longer.

I do have pain for which I take pain killers, I have had serious weight loss, this is now slowly reversing. I am quite frail and can't go out clubbing every night or run a marathon, lol nor do I think I could work.


However I live alone and am able to take care of my needs, except heavy supermarket shopping - a friend helps with this as I don't drive.

It can be isolating not going the chemo route, people expect it and seem to think one is 'giving up' if chemo is not the choice one makes. I feel very sure that had I done chemo my quality of life would be terrible and it would kill me eventually. .

I don't have CT scans because of the high radiation, I have an x-ray a couple of times a year for the lung and spine mets and ultra sound for the kidney, there has been no change.

There are lot's of alternative remedies out there, some when examined seem just as risky as chemo - and there are many scams as well, so do be careful.

I don't come on the boards very often as I prefer not to think about the cancer too much, it can very easily become the main focus in life. I feel this is a mistake it becomes too important. I prefer to live as normally as I am able whilst I still have life, I don't want to give the end days of my life to cancer.

I wish you well,
God bless you,
Cee

 
Old 07-27-2007, 12:46 PM   #19
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Re: Decided on NO chemo, any suggestions

Thank you Cee for your response. How inspiring. I do agree with you all the way. I dont let the cancer consume my life. My search is just for "healthy" living while I can and finding just the everyday things to help it like nutrition and such. Right now, I have no pain, maintaining weight, fatigued and a horrible cough with lots of mucous but can do everyday activities. I have been called a "quitter" for not taking chemo. But it is my body and my life. Chemo was just not the route for me. If I had taken it, I feel I would have been the #1 couch potato because of nausea, vomiting, extreme fatigue and over all just plain down. That is NOT for me. I want quality of life, not quantity. I want to do what I can do while I can. I have lived my life and am at peace with MYSELF, not what other people think I SHOULD do. I always say not to criticize a person unless you have walked a mile in their shoes. That is an old Indian saying. I truly believe that.
You will be in my prayers and I do wish you the best. I am CAREFULLY looking for helpful things and researching anything I find very carefully.
Thank you.

 
Old 07-29-2007, 01:59 PM   #20
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Re: Decided on NO chemo, any suggestions

Turbo,

Once again after reading all your post here I have to say I admire you and your decision. You are not a Quitter for not doing chemo as what would you be quitting..life? You are not quitting life.You are living it complete with what it has handed you and you know what quality of life is important to you and do not want to accept less. Chemo did not make my mom sick but it did leave her very fatigued especially the 4th line agents and all she could do was sit all day and watch TV and she was so unhappy about that as she was a person that had loved life and loved staying busy doing things..heck while in her 70's she scrapped, sanded and painted the outside of my parents house! It broke my heart to see her so sad and unhappy. When she decided to stop the chemo she wanted to die ASAP rather then live life like she was .She actually got mad at the hospice doctor who said she could live for months based on her last CT. Thankfully FOR HER he was wrong and less then 6weeks later we think a pulmonary embolism did her in.

In one post you said people told you you were selfish.. they are so wrong as it is they who are selfish. They do not want to let you go and are willing to see you go through chemo to possibly have you here longer. When my mom was in the hospital and met her oncologist for the first time, he told her she might last 6 months without chemo with chemo about 1 year. I was the only one with her and believed strongly that the decision was hers and hers alone as it is her body and life . I will admitt to you that with my selfish heart I sat there and prayed she accepted the chemo as I wanted her for as long as I could have her. I knew at the time it was a selfish wish but the thought of saying goodbye to a loved one is so painful, had she chosen no treatment I would have kept my mouth shut and supported her. Yes I am glad she did chemo as we had her another 2.5 yrs and alot of it was good quality time as she responded to Tarceva and it destroyed the tumor in her lung and it never returned, instead our battle was with multiple liver mets. Of course who knows maybe she could have lasted that long with out chemo but because her breathing was so compromised as she had a pleural effusion when they found the cancer I doubt it.

I often see the selfish side of families at work, currently we have an 88 yr old and her daughters just can not say good bye to her and they are calling all the shots. She is miserable and wants to die but they will not let her instead after months in the hospital she will be moving to a subacute unit for people with trachs and ventilators as she has both. She is miserable and so depressed and unhappy and all of us wonder why can't her daughters see that? Her daughters are being selfish because they can not say good bye instead they choose to see her miserable. We see it alot as I said letting loved ones go is just too painful for some people.

No you are not a quitter or are you being selfish you are being true to who you really are and you respect the quality of your life. I am sure there are natural things that work as well as chemo. Chemo can knock lung cancer back but with advanced lung cancer that is usually all it does.

Look at Cee, heck she has made it a year and alot of people that do chemo and or radiation do not make it that long and with luck she will make it much longer. Remember that was the stastic the doctor gave my mom with chemo!

It sounds like you need the support of someone that believes in your choice being the right one for you so you have that support from me as I believe each of us has the right to decide our own treatment without others telling us what we should do as it is our life and our body. We are the ones that have to suffer any pain, fatigue or side efects of treatments and that should be our choice. Part of life is death though many like to think death is just an option, it is not it is a true part of life. No one will beat it when your time comes your time comes.

Lots of cyber hugs and prayers coming your way . JanMarie

Last edited by Janmarie2; 07-29-2007 at 10:54 PM.

 
Old 07-29-2007, 06:16 PM   #21
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Re: Decided on NO chemo, any suggestions

WowJanMarie what an inspiring story. I am sooo sorry about your mom. But you know this is exactly what I try to relate to other people around me. I want quality, not quantity of life. I am one to do very extensive research when it comes to MY well being. Ive had heart bypass and still have some inoperable blockages. This I also had to take into consideration when it came to chemo. I have the heart problem under control as of now. If I can do what I can now, I want to do it. I AM NOT one to sit and feel sorry. I do not let this illness consume me day to day. I have no immediate family around me in the state. So basically when it comes to it, I am alone. this board is helping me to find what I need to live each day to the fullest while I can. And like I said, I am at peace with myself about this. I have donated my body to science, an I have a living will so as I want no mechanical things to keep me alive. My main goal is to eat what is best for me. Do get exercise and move on. LOL...the hardest part is WHAT diet, what supplements I should take and so on. This is my search. Someone mentioned a tea here called lotus powder tea for wet lungs or pleural effusion. Im having trouble finding it. I am also waiting for a book I have coming "Beating Cancer with Nutrition". I KNOW there is no cure but if I can make everyday living better while I can, this is what I want to do.
I know it was hard for you with your mom and my heart goes out to you. Yes, people dont want to let go, but I myself know that if suffering or prolonging is worse than passing, I would rather pass on. People can take so much suffering before they just dont want it anymore. and when you lose your quality of life, it is even harder. Thank you for your prayers. Bless you for taking the time for me. I really DO appreciate it. Everyone here has been so very nice to me and believe me it helps more than they realize. Bless them all.
Prayers and hugs to you. Thank you

 
Old 07-29-2007, 06:24 PM   #22
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Re: Decided on NO chemo, any suggestions

I'm sorry I haven't been on the board for a few days...
We ordered the tea online. The brand is
Mitoku Macrobiotic dried Lotus Tea powder and dried ginger powder.
It comes on a bag with 8 oz.

 
Old 07-30-2007, 10:45 AM   #23
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Re: Decided on NO chemo, any suggestions

Hi Turbo,

No 'YOU ARE NOT A QUITTER' Don't let anyone say that and please don't believe it of yourself. You are dealing with your cancer in your own way, you are in control of your life, to some extent your death, and are free to choose to do as you wish.

At this time in your life, more than any other you have the absolute right to do as you want to do, to put yourself and your wishes first. The people in your life must learn to respect that and you. It may take time for some to do so. I have made many discoveries about the people in my life during the past year, new people have come into my life and some old faces are no longer around. Some accepted my decision immediately, others became silent for a while, and are now making contact again. I think it's difficult for them. First they have to come to terms that you have cancer, and many people don't know how to react. Then they have to come to terms that you are not having chemo.
Most people know very little about cancer, other than 'people get cancer they have chemo and their hair falls out, and with a bit of luck they are cured'. The info put out by the mainstream media. So in a way it's possible to understand their reaction. That does not mean we have to alter our choices to accommodate that reaction.

PLEASE don't let people put a downer on you because you are not doing what they want you to do. This will wear you down and right now you need your all energy for you, to maintain your quality of life for as long as you are able, and it may be a long time who knows.

I don't know what the odds are for stage lllb but the odds are often wrong. When I was diagnosed they told me three months to one year, in fact my doctors are very surprised that I am still here.

I was invited to have my kidney removed at the beginning or the year as I was getting a lot of pain, I met with the surgeon and he offered to remove the kidney the next day, and put me on interferon for the rest of my life. Then a group of medics had a meeting about the surgery would have been very complex as I have breathing problems as well. I had to decide quickly a 5 minute decision, to be made whilst standing outside the hospital, I decided against surgery, and interferon, as I 'knew' my quality of life would be destroyed.
My decision was based on the little voice inside me - I KNEW it was wrong for me to have the surgery.
Why am I telling you all this - Well it's to ask you to keep listening to that little voice inside, it knows more than we ever can know rationally. The good news is that my kidney pain has reduced over the past seven months.

Years ago my stepfather was diagnosed with colon cancer with mets in the liver. His prognosis was three months without chemo and six months with chemo. He decided against chemo, everyone thought he was crazy, depressed, giving up and so on. He lived over five years was happy and could do most things, having very few symptoms until the last month of his life.

Perhaps a lot of people decide not to have chemo, we just don't get to learn about them as there is really no meeting place and I think most medics don't want to think or talk much about that option as it's not pro-active for them.

Years ago in the 50s or 60s there was a movie, and I don't remember the name of it sorry, perhaps someone does, there was a song in the movie and one of the lines was 'I'm gonna wash that man right outa my hair' sung in the shower.
My main cancer treatment is standing in the shower singing 'I'm gonna wash that cancer right outa my bod' performed with a bit of a dance so the water hits it's target areas - daily.
Laughter is the best medicine

Good luck and don't let them bring you down. You are in my prayers,

God bless you,

Cee

 
Old 07-31-2007, 05:12 AM   #24
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Re: Decided on NO chemo, any suggestions

Thank you so much Cee for the encouraging words. THEY are very much appreciated. I can understand other peoples feelings and I respect that but I also let them know IT IS MY LIFE. Like I have said, I am at peace with myself and have no regrets on my decision on the route I have chosen. My main goal now is to boost my quality of life the best I can and hopefully can with excercise, nutrition and common sense. My oncologist doesnt seem to be into "other" methods of help. When I asked him what I could do at home for myself, the only thing he said is what I do everyday. Well duh, things need to change in some degrees as far as what my body needs and doesnt need right now. But I find it confusing as to what to decide on. Sooooo many things out there and trying to decide what is best is the confusing part. Wish they just had a list that said take this, dont take that, this is the vitamins, supplements and food you need. But it isnt that easy.
Again thank you, I do appreciate it. Bless you. You have done so well for yourself and I appreciate your time for me.

 
Old 07-31-2007, 10:43 AM   #25
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Re: Decided on NO chemo, any suggestions

Hello Turbo58 I do not have cancer but I read this site because I lost my mom to stage 4 sclc in 2005, I was her care giver. It was very hard for me to watch her go down and trying to do the right thing for her and she off course put her faith in my hands. She did have radition for the brain metastics but it only made her quality of life worse. It is my opinion and my opinion only that I wish she had lived her remaining life with quality but she wanted to fight and she did. Any way getting away from that I went to health and nutrition stores and asked them for helpful products to boost her immune system and they were great so I would suggest you go to the sourse and tell them what you are wanting and I am sure they would be most compassionate and helpful to your needs. I am not sure if I can mention names of suppliments and nutrition on this site so I won't but I'm sure you know what I mean? Also on-line books sites (I probably can't mention) but if you enter nutrition and supplements for cancer in the search bar you will come up with a large selection of books on this very topic. I have to tell you Turbo I really do admire you for your decision on taking charge of your own health in your own way, it may not be for everyone. I also admire other's in their faith and challenge with this terrible disease. There will always be opinions and disagreements with all choices, but it is yours to make. I hope you all find a health program that works for you. ((((warm hugs))))

 
Old 07-31-2007, 11:51 AM   #26
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Re: Decided on NO chemo, any suggestions

Thank you ebrena. Having this disease is hard, but attitude and wishes of the one whom has it is what I feel counts. I plan to do my best with what I have and come what may. And I will certainly post here what works for me hoping to help someone else as those who haved helped me. Its time for MY body to fight back with all I have. Hopefully, what I choose is right for me, meaning diet, supplements etc. And I do plan this weekend to get to a nutrition store and will definitely do what you suggest, ask!!! Thank you for your input. It is taken to heart and appreciated so very much. Bless you

 
Old 08-21-2007, 09:00 PM   #27
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Re: Decided on NO chemo, any suggestions

Hi. Just checking in and had a couple questions if anyone can help. I am doing okay. Taking vitamin supplements and teas. No pain. I did discover a while back another supraclavicular node swollen and a swelling on right side of neck. I had a CT scan done last week. Went to oncologist this morn. he said I had very enlarged thyroid gland. I am to see a radiologist this thurs. After the fact, which is my fault, I thought well why would they want radiation on my throat area for this? Wouldnt they just want to remove thryroid gland? Puzzles me a bit. BUT I am going to wait and see what this other dr says. I STILL refuse chemo and such. Dont even know if I want any radiation. My onc says it is pressing on trachea and keeping my airway open is more important right now. ONLY radiation to throat area. AND he also says that he would like me to take a drug called Tarceva. Some pill for cancer. Havent heard of this before but that is neither here nor there.
Has anyone heard of lung cancer spreading to thyroid gland and what is method of treatment for it? This is a little puzzling to me and want to know what I can before any decisions on anything. I feel good beside being fatigued and this awful cough.
Thanks everyone and Bless all of you. I read posts everyday and wish EVERYONE here the best.

 
Old 09-28-2007, 09:15 AM   #28
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Re: Decided on NO chemo, any suggestions Bump

Hi
Just saw your post, I don't get online very often so sorry for the delay.

Palliative radiation is I am told very effective and if you have a mass growing around the trachea may be well worth having. You could choke to death otherwise, a very frightening way to die. If it was me I would have the PRT palliative radiation therapy, for the trachea mass. It has a high success rate.

Dont know about mets to thyroid. Lot's of people here have experience of Tarceva, by bumping this post you may get a reply or do a search Jan Marie's mum was on it for a while.

Sounds like your cancer is on the move - mine does that then stops for a while. Hope that you are feeling ok within yourself.

I'm feeling tired now so must go and rest.

God bless and protect you,
Cee

 
Old 11-19-2007, 06:25 PM   #29
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Re: Decided on NO chemo, any suggestions

Turbo,
After reading your posts, just wondering how you are doing, and if you found any natural remedies helpful.
Best Wishes to you,
Sherri

 
Old 11-19-2007, 07:21 PM   #30
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Re: Decided on NO chemo, any suggestions

Hi and thank you for asking about me. I am doing fine so far. I just finished 6wks of radiation for preventive measure. Had it done to neck and chest. Neck was most important to keep airway open. It wasnt bad, some burning of skin and trouble with throat but I got thru it. THEN...came down with nasty head and chest cold. Trying to get over that now. Am to have CT scan and bone scan next month. As far as remedies, lots of vitamins and some supplements. I take Vit E, C, B12, COQ10, multi vitamin. Take Melatonin at bedtime. Among the other prescribed meds I take every day. Lots of those!!! I am fatigued easy but do every day chores. No pain. All blood work has remained normal and good. I did discover a change in one breast. Saw Dr this morn and am having mammogram tom morn. I know it is probably spreading but this I expected. Would I have been diagnosed early, say Stage I or so, I would have considered chemo. But not for me. It is not worth it to me. I am at peace with my decision. I have great Doctors, which makes things soooooo much easier. My oncologist and radiation oncologist both told me that attitude, careful nutrition and exercise can help a person more than they realize. Suggested not to go overboard with supplements but work on immune system and vit supplements. So far it has worked for me.
Again, I thank you for asking.

 
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