CHEMO OR CANCER

I don't want to seem cynical about this subject since I have had many discussions with all the wonderful people on this site about many subjects. I had a lung primary that was removed (adenocarcinoma) in Feb.
I had a metastasis ( six months later) to my right adrenal gland (adenocarcinoma) removed in Sept.
The metastasis was quick in coming after being only Stage 1 after the lung primary. I am faced with the
prospect of being decimated by long doublet chemo.
Right now, NED temporarily. Well, the lung surgeon said "cure". The metastasis surgeon said get to chemo right away. You wonder what will do you in
first. An early metastasis means a high probability that even heavy chemo doublets will not stop the beast. I remember one Doctor who wrote an article in a journal on Cancer that it's not the disease that kills most people, it's the treatment. The Quality and Quantity of LIfe. I'm 66, and want to live a lot longer but not with the long suffering that comes with chemo.
I have to try different alternatives like single agents to see what poison does work on me. After all this time and the "infusion" of research funds and today's technology only comes up with poision being injected into your veins. Gotta be a better way. Tony590

By mitziger
Posted December 6, 2008 at 5:24 pm
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I too, had my surgery at Moffitt cancer center, isn't that a wonderful place? They could not remove my lung as there were spots on the right lung too that they were not sure about whether they were malignant or not. With a wedge resection they could not check those nodules out. Did you have Dr. Somners and his wonderful arnp? I know there is more than one surgeon there and they are very good. I would go there again if need be since it is only an hour and a half drive. Good luck and God Bless

By mitziger
Posted December 6, 2008 at 5:15 pm
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I did not know your body would do that. That is wonderful, so you probably have almost full lung capacity. I knew your body made new run-offs for blood vessels but this was something new to me. Must be you exercise and do a lot to build the lung up like that. Whatever you are doing, keep it up and God Bless.

By mitziger
Posted December 6, 2008 at 5:07 pm
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You sound like me Tony, I have had 2 treatments of taxol/carboplatin and the 3rd one they changed to taxotere and carboplatin because of numbness and pain in hands and feet.. I am supposed to have 3 more even though post-op pre chemo PET showed highly unlikely to be malignant, more like inflammatory and of course the treatment has made me sick as a dog each time. I am supposed to have PET scan before next chemo which has been delayed because of blood counts and I do want it before another treatment. Each one makes me sicker, they tell me the effect is cumulative with each one and I believe it. Emend does not even help me except for 3 days and then it all breaks lose for another week or so. I have never been a wimp so can't believe it is because I am that it bothers me so bad. In fact my kids were more worried about the cancer than I was. Maybe just denial but I had to reassure them I would be ok. Do what you think is best, I wanted to say no to it but I could not for some reason so I am suffering through it. I feel so good for those who it does not affect too much as some have to have it for so long. Don't short change yourself Tony, is the way I felt. I am 75 and it has been very hard on me although I am in good health otherwise feel like this will be the ruination of me if I have to continue.

By 28forest
Posted December 6, 2008 at 3:23 pm
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Hi Tony -

I have a feeling you and I are of similar minds - not ready to die but not really up for chemo without a bit more compelling evidence of its superiority available ---- and where do we get more info?

It looks like Alimta is now approved as a sole agent for second line treatment in the EU. Also heaps of trials looking at it - as if pemtrexed ( Alimta) IS the standard of care and they are trying it in combo with other things.

I am still not clear about the effectivenes of the Avastin. My impression is that it enhanes the effectivness of some chemo - but its not clear of that is for chemos which were less efective to start, or all chemos. Trials urrently underway. ( in th mean time being prescribed)

Also no evidence as far as I know about its effectivness as maintenance drug - have you come accorss any?

I am very wary to start multiple treatments where it will not be possibly to dientagle the reactions and effectiveness ( they told me to do cisplatin, alimta avastin and continue the tarceva I have been on - YIKES!!) .

If possible - ie if things seem to be changing slowy - I'd rather try one at a time.

what do you think? want to share info?

cheers
Ruth

By andmegab
Posted December 6, 2008 at 10:25 am
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tony,

why not at least try the chemo? if it makes you feel as bad as you think it will, you can always say no more, or insist on some kind of change. not everyone reacts horribly to the chemo. for some, its no more than a minor inconvenience. take it one infusion at a time. if it gets to be too much, tell the doc, see what changes he can make or what he can do to make things more comfortable for you. they can do sooooo much more now than they used to be able to. give it a try, if its horrible, you can always say no more, and you havent lost much.

deb

By Kammy7
Posted December 5, 2008 at 1:08 pm
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Hi Tony Just a thought.....4 months of treatment is nothing compared to giving yourself another 20 or more years of living....Diagnosed with Breast cancer at age 43 Stage 1...Decided to do chemo and 10 years later Breast cancer is gone....Now I have primary lung cancer stage 1B at age 53....Left lung removed Nov 08. Went to Moffitt Tampa, Fla and had the best surgeon and care. They said chemo would up my odds from 65% to 80% not to live for 5 years but to cure it. Started chemo Wed Cysto and germaz? Taking Emend for nausea and AOK....One reason I think chemo is important if youve had one or more primary cancers the chemo also kills cells from other organs. Its kinda like making your whole body cancer free. Also really gives you pea ce of mind.....Have read and heard of to many people who did not take it at stage 1...most curable and it returned stage 4. Went to Sloan Kettering for a second opinion and they said the same thing...Listen to your inner soul...Know it will guide you in the right direction.....In my thoughts and prayers K

By Nickymoto
Posted December 2, 2008 at 5:07 am
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Dear Tony, I had chemo after
VATS surgery removing right upper lobe, because it was 1B oncologist recommended Chemo. Did 4 rounds of Chemo. Not bad, Carbo siplatin and terseteer, I know I am not sure how to spell them, I am 4 1/2 years now without any evidence of disease. I did the chemo because after consulting the list a lady who had the same surgery and did not do chemo, resulted in finding stage IV a year later. Very happy I did the chemo at the advice of this brave person sharing.

By peyz33
Posted December 1, 2008 at 10:09 am
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Hey Erin - Imagine MY surprise when I saw the actual CT scan - I was like "HUH" - is that ONE lung??? He asked me if I was running any marathons.....lol -

By erinroro
Posted December 1, 2008 at 9:43 am
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Wow Karen! I never knew that could happen - the remaining lung 'growing' and taking up the space of the one removed. That is really cool!

I hope your Thanksgiving was great!

Erin

By peyz33
Posted December 1, 2008 at 9:18 am
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Hi Doug - yes - they took out the entire right lung - happy to report that after my last CT it shows that my left lung has grown and taken over the chest cavity and is the size that both were originally - strange how the body "right's" itself. I still have a cough but my surgeon and Pulm don't seem to be too worried about that.
KP

By Dougout
Posted November 30, 2008 at 4:32 pm
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Hi Karen, Happy to hear of your success to date, keep on fighting. I havent seen this discussed yet and hope Im not to personal asking this. Did you say that you had your entire right lung removed? If so I am curious as to the quality of your ability to breath after that opperation. Hope all goes well for you.
Doug

By Ramona
Posted November 16, 2008 at 7:49 am
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Tony,
There are exerises to do should you get neuropathy. Massage of the effected area to increase circulation is often suggested as well. I also saw a podiatrist. Turns out partly I had gotten plantar faciatis.
"Natural Statagies for Cancer Patients" by Russell L. Blaylock, M. D., about $15 at some health food stores and on the net, has been invaluable to me. I
think that nutrition, supplements, hydration, Tony,
accupunture, ch gong, yoga and such are all helpful. I had side effects but from what I read not all that bad. I got neurapathy but have 100% gotten rid of it.
Hydration at all times bears repeating. You will feel better for it. That includes such things as organic chicken broth, other soups, fresh juiced veggies; Carrot with apple tastes decent. Add ginger as it is kind to your stomach and healthful.
Feel free to email me directly if you want to ask me about anything.
Understand that fear, terror, depression, mood swings, feeling alone and abandoned kind of go with the territory for most of us, certainly they have for me. Through all that we then work on focusing to stay possitive as much as possible. Consider some form of exercise, meditation, yoga, chi gong. It all helps.
R

By Tony590
Posted November 4, 2008 at 9:24 am
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Hi D: I'm glad to hear everything is back to normal with your husband. All of the side effects bother me but, hey, that goes with the territory, as they say.
You guys showed a lot of courage and it paid off.
I finally am interviewing for a nurse to help me since I'm alone during the day. Think I have one. If I am as brave as you guys, I shouldn't have a problem.
God Bless Tony590

By Tony590
Posted November 4, 2008 at 9:11 am
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Thanks Pam: I read the post by cjm. The exact same thing happened to me. It's a real shock. Thinking you are free and clear only to find out it's just the
beginning. I am struggling with my decision. I hope to make the right one. God Bless Tony590

By pambolek
Posted November 4, 2008 at 8:44 am
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tony I recommend you read today's post by cjm cancer has returned. She was also stage one with surgergy and now hers is back andsheis facing chemo. couldn't help but think of you while you are struggling with your decisions.
Pam

By D1
Posted November 3, 2008 at 8:20 pm
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Tony,
Neuropathy is nerve damage. Even though the chemo was tough, it was definitely worth it. After surgery, my husband was really fine. He had 2 of a planned 4 infusions (they stopped due to the neuropathy) and he was knocked on his back from Feb. to March....and started to be like himself March to June. And, then, he was fine....except for the neuropathy. And, we figured the numbness (feet/fingers) was here to stay, and one year later, that was gone, too. Chemo was a roll of the dice. They said he had a 70% chance to cancer free w/o chemo; they said he had an 80% to be cancer free with chemo. We took the chance for the extra chance at life. Like I said, the chemo was hard, but my husband has felt really good since then. We travel a lot....we are off to Jamaica next week. Then, the week after we return home, he is off to Germany on a business trip. It's as if he was NEVER sick. The surgeon and the onc. recommended the chemo; we deferred to their recommendation. None of us knows the future, but so far, he's 23 mos. and NED. Good luck, Tony. Be brave.

By simplyklb
Posted November 3, 2008 at 6:33 pm
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Tony,
I have watched both my parents fight lung cancer this year. Unfortunately my dad passed away on Oct. 15th this year. My mom is still fighting the beast. She went thru four rounds of Carboplatin/Taxol/Avastin. The cancer still grew. Right now, Mom is going thru both radiation and chemo (Cisplatin/VP 16). It's harsh treatment. But she is getting thru it. She's had to have extra fluids periodically. Mom's biggest problem from chemo has been fatigue. She's got a litle neuropathy in her feet and has some nausea. Wonderful anti-nausea meds help with the nausea. Mom's had to deal with some low counts. I suspect she will need a blood transfusion here soon since her hemoglobin is 8.4 as of today. I will ask people to limi their contact. Tomorrow will be fun since we have to vote... I will make her wear gloves.

Kristi

By Tony590
Posted November 3, 2008 at 6:24 pm
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Debra 1: All I can say is God Bless you. You have been through so much that it pops up out of the lines you have written. I am so glad it turned out so good for you. I will try my best. Tony590

By debra1
Posted November 3, 2008 at 5:54 pm
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Tony-
It has to be your decision and hopefully it will be the right one. I did 8 mos of platinum and irontecan for EXT. SCLC and it was in my adrenal gland also. It was hard, I worked full time for 8 months of chemo and radiation except for the first 3 weeks of treatment. I have been NED for a year now. I am not as strong as I was before chemo and radiation but working full time and living life to the fullest. My thinking was take the Drs. advice and blast the cancer with full guns. I did not worry about the side effects at the time...and now that I know the effects, I will do it again when I need to. I thank God every day that I am still here going strong..

By Tony590
Posted November 3, 2008 at 5:44 pm
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Hi Linda: It's really a disgusting disease. Now I know about neuropathy/nerve damage. Taxol is a very heavy duty drug. I don't know about Alimta but all these drugs carry with them these terrible side effects. I hope all goes well. God Bless Tony590

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