It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Lung Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-22-2005, 09:18 PM   #1
Member
(female)
 
Join Date: Mar 2004
Posts: 70
ScarlettA HB User
I have so many questions about nsclc

Someone I love very much is battling nsclc. He is 70 years old, and was diagnosed in December of 2004, after ct scans, biopsy and x-rays. The doc said that the tumor was huge, and that because of it's size, and his age, they did not recommend surgery. He started radiation around the first part of February, and just finished a total of 33 treatments. He does not want to do chemo, because he is convinced that it won't do any good at this point.

The last radiation treatment was exactly one week ago, and I'm shocked at how fast he seems to have gone down hill in just one week. He's unable to eat more than a taste of anything, is weak and exhausted and has lost about 5 more lbs. 45 lbs altogether. When I saw him yesterday, he could barely get up from the chair and move across the room. I also noticed that his speech seemed very hesitant, and he acted like he was sedated, but he wasn't. His eyes were rolling back into his head. He's not taking any medications at all! Refuses to take anything the doc has suggested. I am surprised, but grateful, that he has had absolutely no pain whatsoever. There was never any pain from the very beginning, which is probably why he didn't have a clue that anything was wrong until it was too late.

Do you think he is extremely debilitated from the radiation, or do you think that it did no good, and he is getting worse? What are the signs if the cancer has met'd to other parts of the body? When I saw him yesterday, I was fighting back the tears, because I didn't think he could possibly even live through the night. However, when I talked to him on the phone today, he said he felt better. I don't know what to expect tomorrow, when I will see him again. Thanks to anyone who reads this.

 
Sponsors Lightbulb
   
Old 03-23-2005, 08:55 PM   #2
Junior Member
(female)
 
Join Date: Aug 2001
Location: GA, USA
Posts: 40
RitaB HB User
Re: I have so many questions about nsclc

Unfortunately, nsclc has many faces, as do the reactions to treatments. My sister who has nsclc was declared terminal last June and all treatments were stopped and she was given up to 6 mos. We didn't think she would still be with us but she is. After treatments were stopped, it seems as if the progression of the cancer did too (but we know it didn't), so it must have been the treatments (which for her did not do anything) that made her feel so bad. Though, she tires very easily now and can't drive b/c last May it was discovered on her brain as well, she still goes to church with her husband, go out to eat, go grocery shopping, occasionally take in a movie as well as a short trip out of town. Bottom line, radiation definitely affects you as well as your appetite and taste. Attention like just sitting with him and talking and when he feels like it, take him places is the very best gift you can give him right now. My heart truly goes out to you.

RitaB

 
Old 03-24-2005, 09:19 AM   #3
Member
(female)
 
Join Date: Mar 2004
Posts: 70
ScarlettA HB User
Re: I have so many questions about nsclc

Rita - It's wonderful that your sister has survived, and is still doing reasonably well. Unfortunately, it's not the quality of life she had before, but it sounds like she has adjusted, and is still able to get out and do things.
I saw my friend yesterday, and I'm truly stunned at how quickly his health is continuing to deteriorate. His attitude is not good, and he is repeating the same things over and over. Mainly: "why is this happening"? Why doesn't my food have any taste? Why aren't I getting better"? Why didn't the radiation work"?
He's also very short tempered and angry: doesn't want to be touched, and doesn't want to talk about anything except his illness. He never smiles or laughs, or shows an interest in anything going on around him or in the world. Not that I think he has anything to laugh about, but I am surprised at how his personality seems to have changed.
I'll go back to see him tomorrow (Friday) but over the Easter weekend, his adult children will be there, so I won't see him until Monday.
Thank you for responding to my message. I really appreciate it so much. I hope your sister continues to do as well as she has been doing.

Last edited by ScarlettA; 03-24-2005 at 09:21 AM.

 
Old 03-24-2005, 06:35 PM   #4
Junior Member
 
Join Date: May 2003
Location: Richmond Va
Posts: 18
VaLady06 HB User
Re: I have so many questions about nsclc

Quote:
Originally Posted by ScarlettA
Rita - It's wonderful that your sister has survived, and is still doing reasonably well. Unfortunately, it's not the quality of life she had before, but it sounds like she has adjusted, and is still able to get out and do things.
I saw my friend yesterday, and I'm truly stunned at how quickly his health is continuing to deteriorate. His attitude is not good, and he is repeating the same things over and over. Mainly: "why is this happening"? Why doesn't my food have any taste? Why aren't I getting better"? Why didn't the radiation work"?
He's also very short tempered and angry: doesn't want to be touched, and doesn't want to talk about anything except his illness. He never smiles or laughs, or shows an interest in anything going on around him or in the world. Not that I think he has anything to laugh about, but I am surprised at how his personality seems to have changed.
I'll go back to see him tomorrow (Friday) but over the Easter weekend, his adult children will be there, so I won't see him until Monday.
Thank you for responding to my message. I really appreciate it so much. I hope your sister continues to do as well as she has been doing.

 
Old 03-24-2005, 06:40 PM   #5
Junior Member
 
Join Date: May 2003
Location: Richmond Va
Posts: 18
VaLady06 HB User
Re: I have so many questions about nsclc

I have a friend who is going through the same symptons from the radiation. She drinks alot of milk shakes and ensure, which seems to help a bit. Her doctor told her to drink 3 cups of essiac green tea a day and you would not believe how great it makes her feel. She is also on the diet of cottage cheese and flax oil mixed together. This is a diet from a doctor who has cured cancer. She said she will try anything at this point, but shes doing good and shes getting her energy back too. I hope this info helps a little. By the way my friend is 75.

 
Old 04-06-2005, 02:51 AM   #6
Newbie
(female)
 
Join Date: Apr 2005
Posts: 4
neraida HB User
Re: I have so many questions about nsclc

Get a juicer and place in it all kinds of fruits and vegetables. This will help with energy and weight gain. Symptoms of weakness come after radiation treatment is complete. Check all blood count weekly. Insist on it. There are meds for WBC - neupogen and RBC - procrit. But nothing for low platelett count. My father also has Lung cancer that has spread. But he has not lost 1 pound since he was diagnosed a year and a half ago. Try it. Good Luck.

 
Old 04-06-2005, 07:38 AM   #7
Junior Member
 
Join Date: Oct 2004
Posts: 35
SOCA HB User
Re: I have so many questions about nsclc

Quote:
Originally Posted by RitaB
Unfortunately, nsclc has many faces, as do the reactions to treatments. My sister who has nsclc was declared terminal last June and all treatments were stopped and she was given up to 6 mos. We didn't think she would still be with us but she is. After treatments were stopped, it seems as if the progression of the cancer did too (but we know it didn't), so it must have been the treatments (which for her did not do anything) that made her feel so bad. Though, she tires very easily now and can't drive b/c last May it was discovered on her brain as well, she still goes to church with her husband, go out to eat, go grocery shopping, occasionally take in a movie as well as a short trip out of town. Bottom line, radiation definitely affects you as well as your appetite and taste. Attention like just sitting with him and talking and when he feels like it, take him places is the very best gift you can give him right now. My heart truly goes out to you.

RitaB
This just goes to show how little is REALLY understood about cancer. And, how much of this tx is REALLY effective or not ? As time goes by there is less and less definitve information being offered to us by the treating physicians. I'm noticing that conversations are being dominated by words like LUCK, PRAYER, MIRACLE, etc. to explain current medical circumstances. We just saw my wife's rad onc. By far, he's always been the most vocal and informative of the medical bunch. At this last visit he didn't offer a single explanation for anything that is currently happening. He just kept shrugging his shoulders and repeated at least three times that my wife's current condition makes no sense medically and that she is extremely LUCKY to be doing so well. He said straight out that he can't take credit for any of this.

 
Old 04-06-2005, 03:50 PM   #8
Member
(female)
 
Join Date: Mar 2004
Posts: 70
ScarlettA HB User
Re: I have so many questions about nsclc

Yes, I agree that the docs are incredibly non-committal. They do use the word "hope" alot. They don't like to answer a question with a solid explanation. They also seem to pass-the-buck between doctors. You start out with a Primary Care physician, then you see the Pulmonologist or lung specialist. Then it's off to the Radiologist. Then you see the Oncologist, to discuss chemo. You ask the the lung doc a question, and he says to talk to the radiologist. You ask the radiologist a question, and he says he doesn't know, and that you have to ask the oncologist. And all along, you're still seeing the Primary. I'm wondering ... do these doctors ever get together and exchange information about a specific patient?

My friend, being treated for nsclc, asked his pulmonologist if maybe he could have a ct scan done to see if the tumor has shrunk since radiation. The doc's reply was that my friend should ask the radiologist. (He's finished with radiation.) So my friend now won't ask anyone. Also, I'm wondering if the tumor has met'd to any other part of the body? No one else seems to be concerned, or has suggested having any scans to take a look. It would make sense to me to check out the parts of the body where it would be most likely to spread, so that they can zap it early on?

I can see where really assertive patients probably get the best treatment. Unfortunately my friend is not assertive or demanding. He tends to sit back and not question or complain about anything having to do with his treatment. I think he's given up hope.

 
Old 04-07-2005, 07:12 AM   #9
Junior Member
 
Join Date: Oct 2004
Posts: 35
SOCA HB User
Re: I have so many questions about nsclc

Quote:
Originally Posted by ScarlettA
Yes, I agree that the docs are incredibly non-committal. They do use the word "hope" alot. They don't like to answer a question with a solid explanation. They also seem to pass-the-buck between doctors. You start out with a Primary Care physician, then you see the Pulmonologist or lung specialist. Then it's off to the Radiologist. Then you see the Oncologist, to discuss chemo. You ask the the lung doc a question, and he says to talk to the radiologist. You ask the radiologist a question, and he says he doesn't know, and that you have to ask the oncologist. And all along, you're still seeing the Primary. I'm wondering ... do these doctors ever get together and exchange information about a specific patient?

My friend, being treated for nsclc, asked his pulmonologist if maybe he could have a ct scan done to see if the tumor has shrunk since radiation. The doc's reply was that my friend should ask the radiologist. (He's finished with radiation.) So my friend now won't ask anyone. Also, I'm wondering if the tumor has met'd to any other part of the body? No one else seems to be concerned, or has suggested having any scans to take a look. It would make sense to me to check out the parts of the body where it would be most likely to spread, so that they can zap it early on?

I can see where really assertive patients probably get the best treatment. Unfortunately my friend is not assertive or demanding. He tends to sit back and not question or complain about anything having to do with his treatment. I think he's given up hope.
Well stated and based on my experience all very true. And, the more doctors that enter the picture the more fragmented the care becomes.

 
Old 05-06-2005, 02:22 PM   #10
Junior Member
(male)
 
Join Date: May 2005
Posts: 33
sportzjunkee25 HB User
Re: I have so many questions about nsclc

I'm pretty much in agreeance with everyone here,,,,,my mom has nsclc and had radiation first which the side effects were horrible....after a few months she was fine and bounced back....then she started on gemzar and once again horrible side effects....at this point we didnt know whether the cancer was killing her or the treatments.......after gemzar she tried tarceva and it was just like before.....needless to say hospice is involved now and my mom doesnt want any more treatments.....it made her feel worse than just having the cancer.....In my opinion everything they try is just experimental...what works on one person may not work on another......the doctors just go down the line of medications until they get one that works....I want my mom around as long as possible but it's too hard to see her suffer....anyone with nsclc my heart and prayers go out to you

 
Old 05-06-2005, 05:31 PM   #11
Senior Veteran
(female)
 
Join Date: May 2005
Location: Evansville IN
Posts: 504
rockie HB User
Re: I have so many questions about nsclc

Hi Scarlett, thank you for replying to my post. I wish I could reach out to your friend and wipe away that horrible disease. If there were a magic wand, poof....all cancers gone. All MS gone. All Diabetes gone...and on and on....not money, fame or riches. Just no more illnesses. I will pray for you and ask God for love and strenght for you and your friend and his family.

Take care...hubby just now beginning to feel a little sick ...going to check on him

Rockie

 
Old 05-11-2005, 06:03 AM   #12
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Rochester, NY USA
Posts: 957
sawbuck44 HB Usersawbuck44 HB Usersawbuck44 HB User
Re: I have so many questions about nsclc

My brother had nsclc and survived 9 months. He was told 1 to 5 years. The last time he was in the hospital he was puffing up mostly his face. I asked the doctor why and he could not (or would not) give me an answer. He just said very blatently, 'I don't know.' I really got angry at that because if your a cancer doctor, you have seen this before. When my brother finished radiation, he also did not want to be touched but that was because his skin was very sensitive from the radiation. He was frustrated because he couldn't swallow anything. He also had a lot of shakes and ensure. It is a frustrating disease because there are so many slight variations and reasons why one patient with the same thing may do better than another.

My brother's was inoperable and he also had chemo. They did not mention Iressa until the day they told him he only had a few weeks left and that was just 'thrown' out there. Even though my brother knew it was inoperable he asked his doctor again and of course the doctor said not an option.

I would only say to be very understanding of his anger and pain. Find a way to keep communicating with him. Talk about things that you've always talked about. He is feeling very lonely right now no matter how many people are around.

The other thing is the timeframe given. The last conversation the doctor had with my brother, I was fortunate to be there, my brother asked him how long he had. The doctor said 2 weeks to 2 months. The next day they told us he had only a few days then they put him in hospice where he passed on a few hours later.

Most of the time during his illness, I took it too lightly. I thought he'd be okay...he wasn't that sick. Now I wish I would have spent even more time with him than I did. I just pray that others can see more clearly and know how much they are needed.
__________________
If you open the door even a little bit - the devil will fling it open. Keep it closed with prayer.

Last edited by sawbuck44; 05-11-2005 at 06:07 AM.

 
Old 05-12-2005, 01:46 AM   #13
Newbie
(male)
 
Join Date: May 2005
Posts: 1
forjillo HB User
Re: I have so many questions about nsclc

My Mum is 61 years old & had a 2cm tumor removed 7 months agofrom her left upper lung lobe NSCLC & we were told it was 100% successful. Today we were all devastated at the news that the the cancer has returned & that she has stage 3 ?? the doc says she could expect to live 12 - 18 months. We are all completely in shock to say the least & desperate to find out some answers & would love to hear from people out there with similar experiences. We have so many questions that seem to be too hard to get definitive answers on. She is due to start Chemo in 1 week. How will she feel ??? Are we better of trying alternatives like b17 or is it all crap??? Can she lead a quality life with her 2 young grand kids & one due in 6 months ? We are so scared what is going to happen next ?????

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
More Questions on NSCLC chemo HELLASRULES Cancer: Lung 5 03-29-2007 11:52 PM
Chemotherapy Drug Questions HELLASRULES Chemotherapy 23 02-19-2007 03:29 PM
stage 1V nsclc...brain mets....unreal story and need advice and help too angelmama39 Cancer: Lung 15 09-14-2006 04:13 AM
Surgery for stage lV NSCLC plumb Cancer: Lung 3 08-11-2006 07:15 AM
Pain, Pain Lots of Pain NSCLC Stage IVB pjoi4 Cancer: Lung 4 06-29-2006 05:53 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ativan
Decadron
Iressa
Methadone
Morphine
  Oxycontin Prednisone
Procrit
Tarceva
Tylenol




TOP THANKED CONTRIBUTORS



Kimslos (22), LeisaH (13), renee_ky (9), conan1017 (9), Janmarie2 (8), rockie (7), tuckygal (7), flintrock (6), pbj11 (6), snoopy63 (6)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (905), Titchou (848), janewhite1 (823), Gabriel (759), ladybud (754), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 03:54 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!