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Old 03-25-2001, 06:43 PM   #1
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Sue Harwood HB User
Unhappy Non-Small Cell Lung Cancer

I need a miracle!!! My 65 year old husband, Steve, has Non-Small Cell Lung Cancer in the lining of his right lung. He had chemo off & on for 11 months. Last time was 11/00. It was decided to stop & go after quality of life as chemo did no good & he did not react well to it. We were told that it is starting to spread to the casing around the lung. As far as we know, it has not yet spread anywhere else. He has stopped working, wants quality of life, but is still not feeling good. Does not sleep at night, has pain which we are trying to control through hospice visits, gets very short of breath & is using an Option I Converter machine as well as portable oxygen tanks. The drugs have slowed him down, & feels crummy most of the time. I've tried some herbal therapy, but hospice doesn't want me to any longer as it could interfere with the performance of the pain drugs, etc.
I want to find an alternative clinic or doctor who thinks he can save Steve. I'm not good on the internet & have found no useful answers. Any guidance would be very much appreciated. I have read about a couple clinics that help terminal cancer patients, but I don't know how to find them. Thank you for anything you can tell me. Sue

------------------
Sue
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Old 03-26-2001, 06:15 AM   #2
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rosilita1 HB User
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sue,
while i do beleive in miracles i beleive they come from not earthly sources. if you think alternative therapy is going to cure your husbands c ancer and someone tries to tell you that. they are taking you for a ride. lung cancer no matter what type, is terribly agressive.your husband is young at 65 by todays standards. if he wants to fight still he should be given a chance.i understand its hard to know how to research on the internet. all you have to do is contact a big " university of" hospital. such as university of michigan , wisconsin exc. a cancer counselor will tell you many of them are trying new angiogensis drugs such as iressa which are aimed at controlling the cancer with very little effect on the patients quality of life. since your husband already tried 'standard' chemo he would qualify for that type of trial.since he is over 65 its is covered by medicare. good luck to you whatever you do. by the way there has been some sucess with drugs as iressa due to the makeup of nonsmall cell lung cancer because its a very homogenous cancer (meaning it requires a lot of blood supply to keep growing)

 
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Old 03-26-2001, 06:34 PM   #3
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Sue Harwood HB User
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Rosilita:

Thank you for your message! I will try what you said & appreciate very much your suggestions. Hopefully, some time soon, I will be able to let you know that we had very good luck from your input. Thanks again!

Sue
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Old 04-03-2001, 07:55 PM   #4
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J Elaine Bultemeier HB User
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Sue,
My husband has just started 3rd month of Iressa. He is being treated at M.D.Anderson Cancer Center in Houston. The trip is hard on him (650 miles from our home), and he was extremely tired first couple of days after return this time. However, yesterday he took care of some chores/projects/errands and today he was up before me to go fishing with a neighbor. He was tired when got home, but after nap on couch, he is now watching TV. I compared today with a month ago, and can sincerely say my husband is better. He went fishing with same neighbor last month, and when returned was exhausted. Every day is different, and we are starting to accept the fact that his condition can change radically at any time. He was diagnosed 3/8/2000 with Stage IV Lung Cancer in lower right lobe. It had spread thru entire right lung, lining, liver, and spine from Dec-Jan 2001. While we pray that God will intercede with a miracle, we continue to do what God's medical helpers here on earth advise. God Bless. Elaine

[This message has been edited by J Elaine Bultemeier (edited 04-03-2001).]

 
Old 04-04-2001, 06:42 PM   #5
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Sue Harwood HB User
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J. Elaine:

Thank you for your information. My husband is extremely fatigued the last few days. Does nothing but sleep during the day & eat a little bit. Rarely sleeps at night - up & down all night long. I will see what I can come up with for Iressa. Good luck to you & your husband. I know what a challenge this all is to each of us. Like you said, we pray that God will perform a miracle for our loved ones - soon!!! It's so hard to watch them suffer & we can do so little!!!
Thank you!!! Sue H.
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Old 04-30-2001, 11:32 AM   #6
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marge112 HB User
Talking

I'm posting for the first time. My husband has Stage IV Lung Cancer. He was diagnosed on 12/99. He has gone through a number of Chemo Therapies. Initially he did very well. Tumors on Lung had schrunk as well has his tumor on the liver. Then lung tumor started to grow. After next Chemo tumors again got smaller, than at a later exam, tumors became stable.

We are just hanging in there. Hoping for time and hoping for research to come up with a better therapy for this most devastating disease.

All I can say to all of you is to keep the faith. Try to keep your spirits up. We keep setting goals. This past year we went on a cruise, and my husband was able to attend our son's wedding. Now we are looking forward to our anniversary on May 18th. So, I just keep setting up milestones, and he keeps meeting them.

I hope you get this message, as I haven't been able to sign on before. I will check again tomorrow.

Marge

 
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Old 04-30-2001, 05:11 PM   #7
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Sue Harwood HB User
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Thank you Marge! My husband is getting worse and it is hard to feel so helpless. I hope you have good luck. Have to go now, he is calling. Thank you! Sue
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Old 05-01-2001, 12:17 PM   #8
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marge112 HB User
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Sue,

I'm sorry your husband is not feeling so good these days. I guess it's the way of this disease. We have our ups and downs, mostly downs. My husband just got home from having Chemo. Terry is 58 years old. I feel guilty because I can't stay home and take care of him, as I have to work in order to have medical coverage for him.

I just called him at home and he told me he was very nauseaus. He hadn't had Chemo the last two weeks because his blood cell count was very low. However, it picked up sufficiently for the Dr. to agree to give him Chemo this week. Sometimes I feel so defeated. The Chemo takes so much out of him, and we haven't had one remission yet.

It seems to me that they are experimenting with our loved ones. I'm sorry for ranting, it's just good to correspondent with someone who can relate.

Take care of yourself and Good Luck

Marge

 
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Old 05-01-2001, 01:34 PM   #9
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Sue Harwood HB User
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Marge:

Contact me any time you want. I do know how you feel. However, I am very lucky because my company decided to downsize and I retired at the end of the year after 30 years with my company & luckily Steve turned 65 last November & went on Medicare so he is covered for most everything - thank the good lord!

All his children are grown with families of their own in the Seattle area, so we are alone in Orange County California. But, it's a great family & they have been visiting a great deal these past few months. We have a lot of prayers going for us, I just wish they would work & make him a lot stronger. We are both afraid he is going down hill fast. Too many things are happening in the negative. But, we keep on being practical & holding out hope for that Miracle!

Steve had chemo from 1/00 to 11/00 and quit because he reacted badly to it & it was not doing him any good. I have tried several herbal & alternative therapies, but nothing has worked the miracle we need. His non-small cell lung cancer started in the right lung lining & last cat scan showed it was spreading into the casing around the lung. That was a couple of months ago & has probably spread further because he gets pains in several different areas. By the way, we are working with hospice for pain medication, hospital bed, oxygen, etc. You might look into hospice to see if they can help your husband become more comfortable, etc. Medicare pays for Steve, but maybe your insurance would pay for your husband. Worth a try!

Got to go - keep in touch & best wishes for complete success for you both!

Sue H.
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Old 05-03-2001, 08:03 AM   #10
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Hi Sue,

Thanks for your reply. Terry is feeling a little weak today, but no pain thank God. He is probably going to have a CAT scan in a couple of weeks and then we'll know if he has had a positive response from his Chemo.

His Dr. has been treating him quite agressively, and so far he has been able to handle the therapy.

I try not to think of the future. I'm literally taking one step at a time. I don't know if that's the best approach, but it seems to be what we can handle now.

As far as Hospice, I have contacted them. I will be attending a support group which they have every other Saturday. I know they are a wonderful organization as I used to work for them in the fundraising end.

How is weather out in California? Here in Florida is starting to get hot. We have had a water shortage, but I expect that will reverse itself soon with Hurricane Season at the horizon.

Take care and good luck.

Marge

 
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Old 05-03-2001, 10:23 PM   #11
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Sue Harwood HB User
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Hi!
Nice to chat with you. Good luck on the cat scan. Steve needs me shortly so this will be short. I started him on an alternative liquid today I've heard good things about. I will let you know in a few weeks if it has helped. It's called Poly-MVA and is very expensive, but if it works, money is no object. I just don't tell him what I spend. His worst problems right now are no appetite & tiredness. But, he is still able to get around on his own feet, I just ask for him to use the wheelchair now & then when he's tired and not dizzy, etc. This new therapy is supposed to help with his appetite & build up his strength. Wish us good luck! And the same to you!

Bye for now. Thank you! Sue H.
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Old 05-07-2001, 05:18 AM   #12
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Michael01 HB User
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Sue, there's a place in West Palm Beach, Florida called Hippocrates. Give them a call and see if they can help your husband.

 
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Old 05-07-2001, 01:03 PM   #13
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Hi Sue,

Hope things are going well with the POLY-MVA. I looked it up on the internet also. Let me know how it works for your husband. I don't think you ever mentoned what state disease your husband has, but my husband has state 4, it has metastisized to the Liver.

Iressa seems to be the new drup they are trying. May'be they will put Terry on that when he is finished with this Chemo.

I just read the post from Michael, wouldn't it have been great if we had known, or if the test had been available for our husbands.

But we must keep positive.

Have a good day
Marge

 
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Old 05-10-2001, 08:57 PM   #14
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Shawna Newton HB User
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J. Elaine,

My grandmother was just diagnosed with stage IIIb or IV non small cell lung cancer. It is squamous cell carcinoma. She is currently doing chemo and radiation but what I would like to ask is should we be at MD Anderson? We live in Texas, pretty far from Houston but we will go if need be. Her doctors in Fort Worth have such differing oppinions that it is hard to know what the best options are. I just need some help. I know MD Anderson is the best but I also wonder if they are doing all they can for her here. If you have any suggestions for me please let me know. What made your father pick MD Anderson being so far away? Thank you and good luck to yall.
Shawna

 
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Old 06-18-2004, 03:39 PM   #15
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VaLady06 HB User
Re: Non-Small Cell Lung Cancer

Quote:
Originally Posted by Sue Harwood
I need a miracle!!! My 65 year old husband, Steve, has Non-Small Cell Lung Cancer in the lining of his right lung. He had chemo off & on for 11 months. Last time was 11/00. It was decided to stop & go after quality of life as chemo did no good & he did not react well to it. We were told that it is starting to spread to the casing around the lung. As far as we know, it has not yet spread anywhere else. He has stopped working, wants quality of life, but is still not feeling good. Does not sleep at night, has pain which we are trying to control through hospice visits, gets very short of breath & is using an Option I Converter machine as well as portable oxygen tanks. The drugs have slowed him down, & feels crummy most of the time. I've tried some herbal therapy, but hospice doesn't want me to any longer as it could interfere with the performance of the pain drugs, etc.
I want to find an alternative clinic or doctor who thinks he can save Steve. I'm not good on the internet & have found no useful answers. Any guidance would be very much appreciated. I have read about a couple clinics that help terminal cancer patients, but I don't know how to find them. Thank you for anything you can tell me. Sue

------------------
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