Hope this doesnt upset anyone not my intention. Personal decision on my behalf and have thought long and hard about this issue.....Am open to any thoughts and ideas all of you may share. Unfortunately we are all in this club together which we never intended to join. Living with 1 lung has been a real challenge due to cancer. Age 54 in the fitness industry and such a shock............................Stage 1 B but thats only a #..11 cem tumor which ended up taking my lung. Doc said it was the largest tumor he has ever seen (moffit So Fla) Just had my last scan on Wed. everything AOK..Think the stress level of having to go back every 3 months may compromise my immune system. With that said should it come back in my existing lung its over anyway. So. Whats the point Kim
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Advise ..... No more treatments!!!
- By Kammy7
- Posted September 26, 2009 at 4:18 pm · 23 replies
- In Non-small cell lung cancer - Stage I
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Decadron Breast cancer Pain Tarceva Lung cancer Folic acid Stress
23 replies
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- Newest first
- By cards7up
- Posted September 26, 2009 at 6:27 pm
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I'm sorry your feeling this way, but as you say, it's your choice. We only want to see people want to fight and live if they have a chance. Hopefully, you will stay NED. Do you take folic acid and get B12 shots. Both of these are recommended to help with side effects and build immune system. I'm sure you know this since you're in the fitness business. Maybe you should see a therapist to help you deal with the stress. I wish you the best. Take care, JC
- By cuddles53
- Posted September 26, 2009 at 7:24 pm
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I think you have a good point here, if it comes back in the remaining lung, but... wait a minuter here... if it does come back in the remaining lung, why not take a treatment to kill the little cancer cells? if they catch it early enough there are treatments you can take right? There are definitely some vaccines coming out in the near future, if you can keep the cancer away a little longer... these vacines may be out, I think they are gonna be cures for some of us. Not all of us, we each still seem to require different methods, but I do think these vaccines, and the immunotherapies are going to show a big improvement in survival time, and not just a few years either, so you could do it for that reason, to hang out a while longer,and wait for the cure to come. You are right it is up to you, and I am not sure in your situation what I would do either, but it is my opinion that I( think you will deal okay with the stress of going for the scans every 3 months, we all do live with it, and it is stressful yes, but then we go and get the everything is stable, and you know another 3 months you may be good. good luck, I am hoping you choose to stay onboard here, but if you don't, I will love you anyeway. You are one of us.
God bless Sandy
- By brooklyn1
- Posted September 26, 2009 at 7:42 pm
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Hi, Kim,
Though I am not fighting cancer in my own body, my husband is. Our world changed overnight last February. He has Stage IV NSCLC, and has chosen to use holistic approach of wheat grass and raw vegetable, sprout and juice diet. Though he did have gamma knife for his brain tumor in April, and it is gone, the steroid he was on, Decadron, compromised his immune system. He lost his muscle, and began to undo all the success he initially had controlling his tumor growth.
Last week we found out his scan showed some good - the lung and upper lymph tumors were large, but not active, but the bad news was the adrenal and lower abdominal tumors were active and growing. His doctor recommended he take mild chemo, alimta, as he felt the diet treatment was not working.
After much reflection, my husband decided to maintain his raw food diet, but add fish for protein to his diet , as he has lost significant weight - 60 lbs - and is now 140. He has made a choice, which is to continue to fight with all his might - but not to use conventional treatments.
He hates the scans, as everyone here does, but they do give a barometer to know how the battle is going, and when to revisit options that might be available. We have no guarantee this is a good choice, or that it will work, but we are trying nonetheless. I am afraid, and I cry often with worry and fear, but I support his with all my heart.
No one can make this decision for you, but I fear you have given up hope, which is one of the most essential weapons to survive this at your disposal. I know you are young, and with one lung your surgery has probably had a drastic impact on life as you knew it.
Cancer sucks, it is a beast, and it is treacherous, but you may have so much more to your life than waiting for the other shoe to drop. And it will, for everyone, at some time or other. I feel such exhaustion and defeat in your words, like this was a really bad day, or many days, and you hit bottom. I am so sorry you have been through so much, which you have. You ask What is the point? to the scans? to trying? to living? That is the question you alone can answer.
But if you can, read some of the other posts on this site, and I know you will have so many responses filled with such love and wisdom from others here who have been where you are. I hope you can move on from this moment with a faith that tomorrow will be better, you will get stronger, and there are many people who need a leader in the fitness world who has faced the worst and triumphed.
Take care of yourself, take a deep breath, give yourself a hug from me.
Always, Peggy
- By doing-ok
- Posted September 26, 2009 at 8:22 pm
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Hi Kim,
I am being followed with my inoperable stage 3 nsclc dx 8/08 by Moffitt in Tampa.
I have two ways in which I can answer you question.
#1) Yes, going every 3 months can be stressful but I try not to think about it until a few days before the appointments. I just know how wonderful I feel when the results come back with nothing new was found or things are getting smaller. Now I have 2 1/2 months of some peace of mind.
#2) Not being checked and pray that it doesn't come back. I am not wanting to be a bearer of bad news, but incase you don't know, it does not have to come back as lung cancer. This ugly monster can show it ugly head just about anywhere it wants.
Needless to say I have chosen #1. As I said earlier, my cancer is inoperable, so I am living with this every day. I have gone thru all the chemo and radiation I can have. I am now on Tarceva and I am very fortunate to still be living an almost normal life.
Also, IF things should start changing or it shows up somewhere else, I want to be ready for it and not give it the years I gave this one.
Remember, knowledge is strength.
Well, this is just my opinion and you know what they say about opinions...lol
What ever you decide,we are here for you and support your decision because we are all kindred souls here with the same goal.
Barb
- By penny53
- Posted September 26, 2009 at 8:42 pm
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Hi Kim I'm 53 with one lung and yes it really changed my life. I'm not into fitness, but I sure like to walk. I can't walk when it's to windy, humid, hot or cold. I can't dance around my kitchen with my grandkids. I have trouble fishing for more than an hour and going to our cabin because of the exhustion. I was worring all the time about it coming back and also wrote on this site. I think we all think what would we do if it came back. It's like we want to be prepared, so we spend alot of time on this instead of enjoying the life we have now. I did need an increase in my antidepressants, but it may never come back, so I think I won't worry till it does if ever. Of course, maybe tomorrow I could be writing about the same thing. Please take care of yourself.
Penny
- By tansy
- Posted September 26, 2009 at 8:47 pm
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Hi Kim,
Sounds like you've been through the wringer in a short period of time. I can understand not wanting any more treatment, or stress related to treatment!
Since you're looking for feedback, why make any final decisions now? Live, love, laugh. The disease may never return. Or, it may and then at that time in your life you can make decisions. My point is, you're wrung out. Recuperate. Nurture yourself.
Cross that decision bridge only if you come to it in the future.
Tansy
- By beckylynn
- Posted September 26, 2009 at 9:52 pm
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Hi Kim,
Look into what you feel will boost your immune system the best. If you haven't read this book plz go and get it from the library PH MIRACLE LIVING by Dr.Robert Young. He really explains how the body works and can heal itself. I feel this will help your chances of not having a reoccurence.
Cancer runs in my family. My oldest sister is right now battling this disease. I try to do the PH protocol in an effort to prevent disease.
Remember, none of us are getting out of here alive. None of us know when the good lord will call us home, we can only live the best life we can that we are proud of and he will be proud of. In the end we will live in our father's house, where there is no pain or suffering.
All we can do is "LIVE", while we are still here.
Becky :)
- By cuddles53
- Posted September 26, 2009 at 9:57 pm
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You have got such great feedback from all of these fine folks on this site. I wanted to read again what others might say to you. They never cease to amaze me these fine people we have on here, and in our group. All so caring, and such knowledge that comes from their words. I hope you now have some more insight into what you should do. It sounds like the best thing to me from what I have read to you is, why waste time thinking or worrying about it right now? Wait and see, maybe you are just having a hit rock bottom kind of day, I have had many myself. In the morning things may seem all different and you have a change of heart. I find this is the case for me with this disease.
God blesess again.
Sandy
- By brooklyn1
- Posted September 27, 2009 at 12:01 am
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Hi, Kim,
I forgot to mention my husband is considering taking LDN - low dose naltrexone - to keep the tumors from growing. Many here have had good results, and it has almost no side effects. You can research it and find more discussions about it here. Maybe it is a way to be proactive. Just a thought. Here is a link if you are interested:
http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
All the best - Peg
- By gemhk
- Posted September 27, 2009 at 4:03 am
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Hello,
Yes I agree getting on LDN as soon as possible is very wise. I wish I knew about it sooner but thankful I was told about it when I did.
Conventional treatment failed me putting me in "terminal" status being told months to live. I have been only on LDN now for over 2 1/2 years.
It is "not" a cure but can stop/slow disease to make cancer manageable so one can "live" with cancer.
By all means, please look into taking LDN. Many take LDN just as a preventative, my husband does.
Dee
http://www.ldn4cancer.com
- By cuddles53
- Posted September 27, 2009 at 7:39 am
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Dear Dee,
I am not sure if you are the lady who at one time sent me a list of physicians in my area who writes the prescriptins for the LDN? I am tryign to find doctors again who write the prescriptions. i can't locate this anyplace,. i think it is lost in my computer file someplace. Also I had another lady asking me all about ti she wants tog et put on it but i couldn't remember who exactly or where exactly i found out how to get the drug? Any information you have on heo to get it would be helpful.
Thanks ?Sandy
- By gemhk
- Posted September 27, 2009 at 7:48 am
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Yes I am the same person.
I just forwarded my earlier email to you sent July 3, 2009 with list of doctors for your area.
It is the same email with regular list of prescribers.
Dee
- By Rubie
- Posted September 27, 2009 at 10:38 am
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Hi Kim,
We all have those fears, how is your breathing, were you a former smoker. I smoked for 40 years and my tumor was the size of a quarter, is that big for a tumour? When I went for my 6 week checkup the doctor said the cancer was gone but I have to go back in Dec. for another checkup. I will probably be stressed out because I am now.
I also have moved to 2 different houses in 1 year, just before my closing date at my last house I went for a checkup and they told me I had lung cancer so we went to live with our son until after my operation and we moved into a house I hate 2 months later because my husband couldn't stand living at my sons. I should have taken a stand and said it was too early and we should have looked around more. I am still sore, so I probably compromised my recovery. Are you exercising. I have been going for walks but now the weather is getting cold here. Are you working now and how long has it been since you were operated on?
I don't like this house but we paid too much for it and can't afford to sell. We are on a fixed income as my husband is 70 and I don't even know if we can afford to pay the taxes in town. If I could have seen the future I would have kept our house in the country as the taxes there were low. But I have to stop thinking this way as I am living in the past and thats not good. The doctor has me on antidepressents to get help get me through this. And to make things worse my nerves were so bad I did smoke again after my operation but not now. I live with the fear everyday its going to come back. And you are right if it comes back in my other lung I have had it. Sorry to sound so bleak but that's my story. I guess its true with smokers you are one puff away from smoking again. I should hate the things for what they put me through. By the way my breathing is not the best and I am not back at work yet as I work in a dairies and so hot in the summer I don't know if I can take it. I was operated on April 28 of this year. Keep in touch ok. I will be 60 in December.
Good Luck!
Ruby
- By Hilltopnana
- Posted September 27, 2009 at 11:33 am
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Hi..I have decided no treatments too..that doesn't mean I am not fighting..actually, I am fighting harder..everything I eat, breathe and think has to do with fighting. I fight every minute of every day. I am trying to keep my immune system strong, and add to it, not take strength away by deluging it with Poison. I really believe, that the body is the most amazing machine ever known to man (or woman), and putting it back in tune is the best chance of survival. That is my choice, hopefully, I am thinking along the right lines.
- By Granny888
- Posted September 27, 2009 at 1:38 pm
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Hi, Kim,
You decide what's right for you, and changing your mind -- now or later -- is a woman's perogative.
A lot has changed, though it doesn't always seem like it, in cancer care. That can continue.
Also, consider your 3-month scans. My doctor is at the opposite end -- no scans unless you have symptoms. This doesn't mean you have to worry about all symptoms, we are all usually super-aware and even more so when we have set scans. I go for something in-between, maybe 4-6 months in early years, longer in later years. Some graduate to once a year.
So, take your break, even if it means no more treatments. Take serious pain seriously and have it checked out, that's what you would do anyway.
I have to argue to get scans, and they are all positive -- but I don't insist on 2 months, 3 months, I go somewhere inbetween pain (who isn't in pain?) and what others have found to be scheduled. Every scan has a side effect anyway. We'll be here, to support, whatever your decision.
- By AliceL
- Posted September 27, 2009 at 1:46 pm
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When I had my lung removed in 1998, and was worried about cancer in my remaining lung, the doctor said "why would you even want to know since there's nothing you could do about it anyway." Today, I would like to wring that doctor's neck. I'm sure he meant well, but I took his words to heart and when they did very little follow-up after the first year or so, I didn't question or complain. It is now over 11 years later and I'm dx Stage 3. I don't allow myself to dwell on it, but there is the thought that if I had insisted on better screening perhaps they would have found the new tumor at Stage 1. Granted, I could not have my lung removed again, but wouldn't I have had a better chance of chemo/rad/cyberknife killing off the cancer at Stage 1 than at Stage 3? I hate the scans as much as anyone, but if I could go back in time I would have insisted on them - I never had one. I too hope you stay NED, but if not wouldn't you want to have the best chance possible?
- By Kammy7
- Posted September 27, 2009 at 3:04 pm
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Hi everyone My heart is just about breaking from all of your kind and caring thoughts. You are all so courages and inspiring souls and thank you for responding. Lost my lung in Nov 08 and caught a virus 2 weeks ago. 1st time sick since having my lung out and think Ive been having an emotional meltdown. My other reason for not wanting to go back is the fact that the chemo was horrible. They decided to give me high dose and I would lay on the bathroom floor for hours. I guess because I had breast cancer before (that chemo was a breeze) they wanted to sock it to me. Lost most of my hearing, eyesight, nueropathy of my feet (balance) and almost all of my hair. Im so afraid to express these feeling because I dont want anyone to not get treatment because of my experience. Most people get thru chemo beautifully without issues. Still working as a personal trainer and love my clients and my job. Think the hard part is every twist and turn short of breath and its hard to forget the reality of the situation. Am going to take your amazing wisdom, sit tight, and continue with my scan. Very few have walked in our shoes and dont understand. Therefore if I can continue to reach out to all of you I would be very humbled My love, support, and friendship to all of you Kim.
- By claires
- Posted September 27, 2009 at 3:37 pm
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Yes, it is easy to get depressed, entirely natural. I lived comfortably with one lung for 12 years following removal of the other at two different times. And then, d-n, it did recur and I am stage 1v, and have been so, stable for two years with alimta. I can't argue wi th your feelings, but my concern (for me) is that it is not easy to die when one is not full of disease, and I'm not, nor are you. I hope tomorrow is a better day for you.
- By Kammy7
- Posted September 27, 2009 at 4:57 pm
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Please believe my honesty in writing this. Dont want to share my feelings with my children, parents, friends, clients, ex hub. Dont want to be a burden and nontheless nobody would understand anyway. Know that you are all going thru your own journey. Thank you for traveling down my road Kim
- By Celia123
- Posted September 28, 2009 at 10:37 am
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Kim, I am so glad you have heard from Dee about Low Dose Naltrexone, I was diagnosed with inoperable NSCLC nearly four years ago, given 6 - 12 months to live. I went on to Iscador first as I was having surgery unrelated to cancer, as soon as I could I got onto the LDN and am here now to tell the tale...... I call it the wonder drug......
Celia
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