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Old 07-22-2005, 08:22 AM   #1
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rwatson908 HB User
My wife has NSCLC, stage IV

My wife is 51 and was dx with NSCLC, stage 4 in mid-April 05. They found a 5x8 cm tumor(primary) in the left lower lobe, lymph node involvement in the medistienum and left axillary and in her spine at L-1,3,4, and sacrum. Her CEA was 167.3. She smoked and has since quite, has respiratory symptoms with some emphymsa. By the way please excuse the spelling. To date she has recieved chemo 5 or 6 rounds of Carboplatin and Taxol and 8 rounds of radiation for her spine. Doctor said the radiation was to stop the progression, none noted at time of treatment, into her spine.
CT after the third round showed the tumor is smaller, 5 cm and the LL lobe is collasped and has encapsulated the tumor. They said this is good???
Her appetite is slowing abit, and she has lost a few pounds. White and red count is maintained with injections every two weeks.
The Docs say she is incurable, no surgery option.
Please advise your opinion and experience, I have been reading the postings and I think they are a great opportunity to express ours fears and concerns. Thanks to you all.

 
Old 07-22-2005, 05:30 PM   #2
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Wink Re: My wife has NSCLC, stage IV

I wish I had a ton of encouraging things to offer you as I too am dealing with Stage IV NSCLC in my 81 yr old mother. Mom has done carboplatin and taxol with some improvement next came Tarceva which has given us 7 months of great times and she has felt so wonderful. ( and I will be forever thankful for) At this point she is a 13 month survivor and alot of it has been her attitude that she was not going to just let the cancer win without a fight inspite of the doctor telling her he could not offer her a cure and in my opinion he has not considered alot of things because of her age. But don't be fooled by age as she was an 80 yr old with no health issues, active and sharp as a tack before the cancer. In our experience the doctor is very stuck on protocols.."well we don't do that in stage lV" yet the survivors I have read about that made it 3 + yrs were able to talk a doctor into stepping outside of protocols and hey they are showing there can be benefit. Check out women against Lung cancer..Lori Monroes story it should make you good and angry to see what she has gone through to get the treatment she wanted and when she wrote it she was a 3.5 yr survivor ( WALC ,Women Against Lung Cancer: A Professional Alliance for Education and Research). If there is no cure shouldn't doctors be willing to try more if that is what a patient wants as yes maybe it will kill them but you are telling them they are going to die anyway and hey maybe it will buy them more time.As for my mom I would not press for surgery as that is a very rough surgery and having worked in a hospital for 24 yrs I know her chances of surviving that type of surgery would not be good.But I have read several stories similar to Lori's involving younger women and surgery in stage IV.I think my mom's doctor is a bit prejudice when it comes to elderly people and I know he is amazed to see her doing as well as she has been doing: however even good times have to end and we see him for last weeks CT results on Monday. In May her CT showed a slight increase in the size of a few liver mets and her CEA was 20 in June the CEA was 70 so we will learn come Monday what we are facing. Am I frightened ..you bet as I am not ready to face loosing her yet. I discussed with her doctor last time that if the only growth we see is in the liver mets would it be worth it having a cyberknife procedure at USF or Stanford and getting rid of them and got the "well that is not the protocol with stage lV" lecture so if this CT supports the fact it is a few liver mets I say srew him I am going to get her records and send them to the cyberknife guys as how could it not help to get something that is growing and destroying healthy liver cells out if there? What I think I am trying to say is don't put 100% blind faith in doctors as they do not even consider nutrition as part of cancer treatment and I think that is a HUGE mistake.! Best of luck to you and your wife on this most difficult journey. JanMarie

 
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Old 07-22-2005, 07:30 PM   #3
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Michael01 HB User
Re: My wife has NSCLC, stage IV

There's a book out called Beating Cancer With Nutrition. Do a search. You also need to look at a Macrobotic Diet and the Kushi Institute. It's widely believe that cancer feeds on sugar so this must be eliminated including natural such as fruit and juices. I have read several testimonals on cancer patients achieving success with the Macrobotic Diet including Janet E. Vitt a RN who had advanced lung cancer and is now cured. Since conventional medicine can't help look elsewhere. There's a reputable clinic in Mexico that has a good success rate using a Nutritional Approach but forget the name. It's now being run by the Grandson of the Founder. There's also a doctor in NYC that has had success with a Nutritional approach called Dr. Gonzalez who's located in Murray Hill Section of Manhattan. I have lots of other information but can't post websites.

 
Old 07-23-2005, 04:16 AM   #4
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Re: My wife has NSCLC, stage IV

Thanks Mike for the info. I will start today with the search. R

 
Old 07-27-2005, 05:36 PM   #5
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Janmarie2 HB User
Re: My wife has NSCLC, stage IV

Hello, Just thought I would tell you what happened at my mom's visit with her oncologist. The CT did show that two liver mets are increasing in size so she will probably be starting chemo again.The doctor feels the Tarceva is no longer helping . I brought up cyberknife again and when he started to give me the "that is not protocol for stageIV" I told him from cancer patient's posts or stories I have read people that did not step out side the protocols generally died sooner then those that took a risk. He next told me that cyberknife was not done outside the brain and spine. At that news I knew he did not really know anything about Cyberknife and that the ball was in my court so decided to push until he finally did admit (which he did) that he knows nothing about it and that his speciality is chemo not radiology. I hate to say it but it felt good to finally have him admit that to me .It surprizes me that oncology has become so specialized that it takes a radiology oncologist to know what treatments there are outside chemo! Anyway because we are dealing with Kaiser we have to go through them to seek approval for possible cyberknife if we hope to have any of it paid by them so I got him to refer us to the Kaiser radiology oncologist who we will see next week. I am expecting a big battle again as I know Kaiser does not usually refer patients to doctors outside their own system and they do not do cyberknife so I expect him to try to talk us into RFA if he feels she would benefit from either.Anyway to any of you reading this please do not assume your doctor knows every treatment available as that may not be true and don't be afraid to question them on things. As for my mom I think the news came as a big blow. I could tell by the spring in her step and her cheerful attitude that she was feeling that because she is still feeling so good that there was no way the cancer could be growing again so it hit her pretty hard. Hopefully chemo can halt the growth and we can get the cyberknife done or get to at least see what the actual cyberknife doctors say as if they say she is not a candidate then at least we know our true options and later will not be thinking " what if..". It is a shame that one has to battle the health care system when you are busy battling a loved ones illness. I too have the book Beating cancer with Nutrition..great book! Best wishes to all of you in your battle with Lung cancer.

Last edited by Janmarie2; 07-27-2005 at 05:36 PM.

 
Old 07-28-2005, 03:04 AM   #6
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rwatson908 HB User
Re: My wife has NSCLC, stage IV

Thank you for the info, I too am sorry for your ordeal with our"advanced" health care system.
My wife's last lab results are down, her white count is down- 2. No raw veggies, avoid people who are sick or have been exposed to illness, can't work, fever of 100.4 or greater must notify doc. She generally is feeling better, appettite is better. Last of the 6 rounds is next week, might be delayed. Typically her white went down the week following Chemo, this time it went down the second week, any thoughts. Thanks to you all and may God Bless. R

 
Old 08-03-2005, 08:46 AM   #7
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Re: My wife has NSCLC, stage IV

I do hope that your wife's white blood count is back up. Towards the end of her first line chemo my mom's WBC would bottom out but somehow it always came back up in time for the next chemo. Do becareful as when they stopped my mom's chemo they doctor told her go out and have fun, go on a vacation and enjoy life but she felt so rotten she wondered why he said that and as we later learned she had a pneumonia and urinary tract infection which was why she felt so bad. We only found those because she had a persistant low grade fever and at her appointment I demanded an answer to why she had the fever as I felt she had the above. The fever wasn't high enough to cause the doctor concern and he was willing to write off how she felt to the cancer itself probably progressing! You have to be the advocate if you think something is wrong make them check it out. My mom will be starting 2nd line chemo, Alimta,next week.She still feels so good so it is hard to think we will soon be back in chemoland but at least she has had a break from chemo as her last chemo ended in Oct. Thus I feel she may be entering this chemo even stronger then she was when she started the first chemo. We are still looking into the cyberknife for the liver mets and see the Kaiser Radiology oncologist tomorrow, a bright ray of hope is one of the cyberknife guys at Stanford told me that Stanford has a contract with Kaiser so he feels they should be willing to cover it if she is a candidate so we shall see what happens tomorrow .If any of you reading this could say a little prayer that Kaiser allows us to check this out we will appreciate it. A friend of my mom's signed her up for CURE magazine it is free for cancer patients and is all about cancer she has gotten two issues and they are very informative so may be worth checking out. I hope your wife is able to have some great time while off the chemo and is able to build her immune system back up.On the Tarceva since Jan. my mom has had some great times that I did not think we would be seeing again when she started the chemo last week so hang in there and know I have added her to my prayers. JanMarie

 
Old 08-04-2005, 04:02 AM   #8
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rwatson908 HB User
Re: My wife has NSCLC, stage IV

Thanks JanMarie for sharing your comments and thoughts. Yes, my wife's white count climbed in time for the Chemo, 7000. Last night the discomfort started and as expected it is worse this morning, this course usually continues until sometime Sunday. She keeps saying this is the last time, I can do this, she is brave and head strong.
Three weeks from Tuesday another chest CT, I pray it will be negative. Then the Radiation Onocologist checks the status of the post radiation of her spine(4 areas).
I pray for comfort and peace to all, "**********". May God bless you all. Ron

 
Old 08-06-2005, 09:38 AM   #9
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Re: My wife has NSCLC, stage IV

my husband 58 was told Sept 4-04 he had lv stage nsclc & bone cancer- he has taken all kinds chemo and radation and nothing has worked -- started tarceva in March Dr. stop it last of July. wants to start him on alimta 8-11-05- please remember us in your prayers. huntsville alabama

Last edited by kammy; 08-06-2005 at 12:20 PM.

 
Old 08-06-2005, 02:21 PM   #10
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Re: My wife has NSCLC, stage IV

Kammy, My mom will be starting Alimta on 8-10 so just a day ahead of your husband. I will pray that they both see good results without alot of side effects.Keep us posted on how he does and know that there are way too many of us on this journey too.Lets all pray that someone from these pages shows the doctors that fighting when you are NSCLC Stage IV is well worth it as doctors seem to just write it off to non curable and if people do not try new things which often means pushing the doctors outside of the given protocol it will stay non curable.My thoughts will be with you and your husband as he and my mom start on Alimta. When my friend started on treatment for hodgkins lymphoma last Dec. my mom's advice to her was don't loose your sense of humor and as her first post treatment CT comes back clear of the lymphoma she still recalls that advice as being the best! Best wishes to you and to you and your wife too Ron. JanMarie

 
Old 08-08-2005, 02:13 PM   #11
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Re: My wife has NSCLC, stage IV

Quote:
Originally Posted by Janmarie2
Kammy, My mom will be starting Alimta on 8-10 so just a day ahead of your husband. I will pray that they both see good results without alot of side effects.Keep us posted on how he does and know that there are way too many of us on this journey too.Lets all pray that someone from these pages shows the doctors that fighting when you are NSCLC Stage IV is well worth it as doctors seem to just write it off to non curable and if people do not try new things which often means pushing the doctors outside of the given protocol it will stay non curable.My thoughts will be with you and your husband as he and my mom start on Alimta. When my friend started on treatment for hodgkins lymphoma last Dec. my mom's advice to her was don't loose your sense of humor and as her first post treatment CT comes back clear of the lymphoma she still recalls that advice as being the best! Best wishes to you and to you and your wife too Ron. JanMarie

 
Old 08-08-2005, 02:28 PM   #12
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Re: My wife has NSCLC, stage IV

Janmarie2 thanks for your reply- lets just pray that all goes well with your mother and my husband. he is real weak now is not eating . just drinking ensure- he wants to take these treatments said he had to much to live for to not take them--- said the lord is not thru with me yet-he is still working on me. we have 2 sons & 3 grandchildren. just pray everyday that the lord will answer our prayers.

 
Old 08-12-2005, 05:17 PM   #13
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Re: My wife has NSCLC, stage IV

Kammy, I thought about you and your husband yesterday and sent good thoughts your way.I hope his first dose of Alimta went well. How is he doing? My Mom had her first dose of Alimta on Wed. and so far so good. She has had no nausea, has been eating well, went to work Thursday morning and went out shopping this AM which is Friday. I had to leave for home this AM to work the weekend but called to check on her this afternoon and let her know I made it home ok as being a typical mother she worries about that! She did say she was tired but she had trouble sleeping last night so I expected to hear that. I figure if she makes it through the weekend without any bad side effects that she should do fine until the next dose then it is wait and see again. She has no plans on giving up anytime soon thou I think the Peter Jennings death shook her up some. We filled out a questionnaire for the cyberknife doctor at Stanford so now we wait and see what happens there. I hope your husband is doing well and that he too has a quiet , uneventful weekend. Let me know how he is doing . . Ron, How is your wife doing? Tell her I send her my best wishes and hope she is seeing some positive results from her treatment. I hope that you and she also have a quiet uneventful weekend. Best wishes to everyone trapped in this awful journey. JanMarie

 
Old 08-15-2005, 12:01 PM   #14
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Re: My wife has NSCLC, stage IV

JanMarie- My husband is so weak after the alimta- he just want eat--Dr. gave him medicine to make he eat but he is so weak he does want to eat. he has gone from 204 to 139 since last sept. the dr. gave him b-12 shot and bone strengther with the chem- but it just seem not give he any energy.i just pray the lord will give he energy and power to take the chem. how often does your mother take this chem--- he's every 21 days. kammy

 
Old 08-16-2005, 12:07 PM   #15
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Re: My wife has NSCLC, stage IV

Kammy, My mom will also be getting the alimta every 21 days as long as her blood counts allow it.She has been feeling quite fatigued over the weekend and had not slept well but says she slept better last night, also having problems with constipation which makes her uncomfortable but it has not stopped her as she is at work this AM and is eating ok. I am very sorry to hear that your husband is having a rough time and I hope he is able to start eating more and gets some strength back. I would say the big plus on my mom's side is having not had any chemo for the past nine months as that allowed her to build up strength since she had no problems with Tarceva. I feel she is starting this chemo much stronger then she did with the last chemo. Keep me posted on how your husband is doing, I will pray for him, Take care, JanMarie

 
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