Not curable but treatable

catman

My Dad's stage IIIb lung cancer, according to the Oncologist, is not curable but treatable. The goal is to keep it from spreading. Does this mean he will be on chemo the rest of his life? Anyone out there in the same boat?

marybear

lung cancer
hi catman my name is mary and husband was daignosed with stage 4lungcancer nscl squamos in june 13.08 could not operate the cancer spread to chest area and lymph nodes he did one chemo on august18 6 hour taxol and cisplatin was fine for a week then couldnt move a muscle got 103 fever put in hospital for 3 weeks heart floor he went into arrthymia of heart and couldnt walk very well to this day he has no more chemo our desicion started takeing tarceva only hope left for terminal lung cancer only on it 3 weeks no rash yet the rash means it is working did cat scan 3 weeks ago the primary lung tumor got larger 6cm by5cm new nodules in right lung as well now in left lung 2 there and 1 on the spleen will see if they tarceva will help shrink the lung tumors that is what its for will do another catscan in 2 months hope your dad is well what treatment did oncologist advise to do at this time

catman

Treatments
Mary - Sorry to hear about your husbands situation. I hope this Tarceva drug does the trick. The more I hear about taxol the more it sounds like it is a very harsh drug. My Dad is on Charboplatin and Gemzar. He has treatments every three weeks for six months. I guess my question is what happens after six months since it is not curable? I dont like dealing with absolutes when it comes to cancer. I believe anything is possible. Most of what Oncologist tell you is based on statistics. If someone only has a 10% chance to live, they still have a chance. Thank you for the information and I hope your husband beats this monster.

marybear

catman said:

Treatments
Mary - Sorry to hear about your husbands situation. I hope this Tarceva drug does the trick. The more I hear about taxol the more it sounds like it is a very harsh drug. My Dad is on Charboplatin and Gemzar. He has treatments every three weeks for six months. I guess my question is what happens after six months since it is not curable? I dont like dealing with absolutes when it comes to cancer. I believe anything is possible. Most of what Oncologist tell you is based on statistics. If someone only has a 10% chance to live, they still have a chance. Thank you for the information and I hope your husband beats this monster.

lung cancer
thank you catman got your message only hope now tarceva the oncologist said he hopes it will help will know in 2 months hubby getting weaker i dont thin it will help to be honest on ly the drug companies are getting richer from this diesese will keep in touch thank you good luck to your dad hope the chemo helps him my hubby would tolerate the chemo but has bad heart goes into arrythmia so fast if he didnt have heart problem could fight the cancer hope you have faith in god he will help your dad threw this keep in touch mary

rodrigud

hey Catman
My husband has stage 4 nsclc and was given a year with treatment, a year ago. He is doing well, working full time. Has Many bone mets, liver tumor etc. He took carboplatin/taxol with good results for 6 months. Decided to do 2 more treatments but cancer didn't respond. Had chemo vacation planned for 2 months but pain increased so he got 15 radiation treatments in 5 places (biggest most painful tumors). Tried waiting for 8 weeks for a new baseline PET but cancer is very active so yesterday he started Alimta. We are scheduled for 6 treatments. He has a positive attitude and refuses to give cancer the upper hand. Goes to work everyday and after treatments. His oncologist has given him meds for every contingency, eg: 4 nausea meds, one is bound to work...laxatives, stool softeners, you name it... When appetite fails he eats many small snacks a day. So a year later he is living his way. He has much pain, he gets nauseous, he has night sweats and sits on pillows sometimes...he has over 26 bone mets. But he is doing it his way and he is doing good...work hard, fight hard and have the best days you can. Prayers are with you...Rodrigud

marybear

rodrigud said:

hey Catman
My husband has stage 4 nsclc and was given a year with treatment, a year ago. He is doing well, working full time. Has Many bone mets, liver tumor etc. He took carboplatin/taxol with good results for 6 months. Decided to do 2 more treatments but cancer didn't respond. Had chemo vacation planned for 2 months but pain increased so he got 15 radiation treatments in 5 places (biggest most painful tumors). Tried waiting for 8 weeks for a new baseline PET but cancer is very active so yesterday he started Alimta. We are scheduled for 6 treatments. He has a positive attitude and refuses to give cancer the upper hand. Goes to work everyday and after treatments. His oncologist has given him meds for every contingency, eg: 4 nausea meds, one is bound to work...laxatives, stool softeners, you name it... When appetite fails he eats many small snacks a day. So a year later he is living his way. He has much pain, he gets nauseous, he has night sweats and sits on pillows sometimes...he has over 26 bone mets. But he is doing it his way and he is doing good...work hard, fight hard and have the best days you can. Prayers are with you...Rodrigud

lung cancer
hi rodrigud glad to know your husband doing well mine isnt only done one chemo ended up in hospital back in sept then heart went into arrytmia only one treatment of taxol 3hours and cisplatin 1 hour now trying tarceva for the lung cancer 3 weeks ago did 2nd cat scan tumor in lung grew 6cm by 5cm small ones in right lung and now 2 small in leftlung also one now one the spleen if the tarceva doesnt help we will be in hospice by christmas time thanks for replying he has nscle stage 4 diagnosed in june o8 only sympton weight loss as of march now down to 112 lbs from150 as of feb keep in touch rodrigud glad hubby doing ok

imakrzymama

not curable
To Catman;
My husband has the same. they called it small cell anaplastic carcinoma. I just spoke to the doctor yesterday while my husband was getting his chemo and he told me the chemo will shrink it but it will never go away. It may seem like it but will keep coming back. That was very disappointing to me but I am not telling my husband this as he is very upbeat and confident that he is doing well. That is all I can ask for. As long as he is happy, I'm happy! Just make your dad comfortable and happy. He will feel much better.

catman

What's next?
Thank you for your response. So, once it has shrunk, what next? Has the oncol said anything about the long term? Will your husband be on and off chemo the rest of his life? Have you thought about getting a second opinion? Sorry about all the questions. My Dad lives a couple hours away so I dont get a chance to go to his appointments with him to find these things out.
Thank you for the information and good luck to you and your husband

marybear

not treatable
Hi catman thanks for the post hope all is well my hubby the last 2 days is getting weaker cant stand up too long i have to go to bathroom with him he said tonight his whole body is getting weaker dont know if the tarceva is working no rash has appt next friday with oncologist but i have to reorder the tarceva buy then will try to change appt for a few days before to see if it is helping him hope your dad is feeling better when was his last cat scaan that would show if the tumors are shrinking we do one every 3 months hang in there catman

APS

NSCLC with malignat pleural effusion
I never thought I would be writing about this...but here I am. My mom was diagnosed 2 weeks ago with Non small cell lung cancer. She started having breathing problems. We went to the hospital and found out she had pleural effusion. The water tested positive for malignant nsclc. This was such a shock for someone age 62, never smoked and preaches to others about health, yoga and daily juicing.
Well, since there is no tumor they have started her on tarceva daily no chemo. She started taking it yesterday. My mom is a very very positive woman and has a lot of faith in god!!
I would LOVE to hear any success stories and people living with this horrible disease.

My prayers are out to everyone out there who is suffering with any form of cancer...

Thank you,

Diane03

marybear said:

lung cancer
hi rodrigud glad to know your husband doing well mine isnt only done one chemo ended up in hospital back in sept then heart went into arrytmia only one treatment of taxol 3hours and cisplatin 1 hour now trying tarceva for the lung cancer 3 weeks ago did 2nd cat scan tumor in lung grew 6cm by 5cm small ones in right lung and now 2 small in leftlung also one now one the spleen if the tarceva doesnt help we will be in hospice by christmas time thanks for replying he has nscle stage 4 diagnosed in june o8 only sympton weight loss as of march now down to 112 lbs from150 as of feb keep in touch rodrigud glad hubby doing ok

arrythmia
I had the same reaction during my 2nd treatment using cisplatin and taxol. I am now on gemzar and navolbine. I find out monday whether or not the tumor (s) are responding.
My left lung was 9cm and the 1 on my adrenol gland was 4cm. I was diagnosed in May 08 stage IV.
I haven't really asked the life line question of my doctor yet. I wish you and your family the best.

marybear

arrthmia
hi Diane thanks for the reply yes he did one chemo cannot do it anymore heart is only functioning at 30% capacity we are trying tarceva one month on it dont think it is helping hime will see primary tomorrow to discuss options with hospice care at home will have to make up our minds if we want to pay for another month of tarceva out of pocket now in the donut hole of insurance it cost $4,500.00 for 30 day supply hope you are doing well keep in touch good luck with your results this week

Diane03

marybear said:

arrthmia
hi Diane thanks for the reply yes he did one chemo cannot do it anymore heart is only functioning at 30% capacity we are trying tarceva one month on it dont think it is helping hime will see primary tomorrow to discuss options with hospice care at home will have to make up our minds if we want to pay for another month of tarceva out of pocket now in the donut hole of insurance it cost $4,500.00 for 30 day supply hope you are doing well keep in touch good luck with your results this week

Insurance....
You gotta love it- Wow! $4,500- did you try and contact the manufacturer of Tarceva? I know there are some studys utilizing that drug. I'm so sorry you and your family have to go through making such drastic decisions.
My scans were good news and bad- The lung tumor shrunk to 1/2 the original size. There are 3 more tumors now. 1 in the lung and 2 on the adrenol gland. New treatment starts on Wednesday.
My heart goes out to you and your family. I hope you are all doing as best as possible.
Diane

blondie1

Stage IV Non-Small Cell Adenode Carcinoma
I am a 56 year old female diagnosed with Stage IV NSCAC in June 2006. I had a tumor in each lung and involvement of the lymph nodes on both sides of the beastbone. I also had cells floating behind my tonsils. I started on Carboplatin, Taxol, and Avastin in July and continued until Nov. 2006. The treatment was grueling with horrible flu-like symptoms and severe nausea. Around the third treatment I developed neuropathy in both feet. By the last treatment I thought I truly was going to die from the treatment. But I didn't and went into remission for a year. In January of 2008 one tumor in one lung had returned. I started a regimine of Taxotere that lasted until April of 2008. The side effects were similar but not so severe. A new side effect was the loss of my toe nails and my fingernails got small ridges in them. My hair has since started to grow back with one small area on the top of my head still very sparse. My eye lashes are slower to grow back and are very skimpy. The tumor was still there at the end of treatment. Very small, but still there. It also is stable (not growing). I am on observation until November when I will get another C-Scan to see how things are going. There are a couple of very promising treatments in the trial stage - so there is always hope. My understanding is that they will try new treatments until it becomes a question of quality of life vs. treatment. Most treatments really take a toll on the body, with some of the side effects being permanent - like my neuropathy. I imagine at some point the treatment will not seem worth it. But for now I am good and have returned pretty much to normal; treatment of the neuropathy has brought some relief - but it is still there.

marybear

not treatable
hi Blondie thank you for your post we stopped tarceva as of today will not pay for it anymore concerned about your nerapathy husband still has it after 2 months how can it go away what can you do for it he has to walk with a walker his feet feel like mush and his legs get so so heavy and tired hope everything is good with you and you get stronger everday mary

dakota770

Hi Catman
Catman,

Sounds like your father and I have the same thing. Incurable means it will always be there with a chance of it coming back. The hope is to get it in remission and keep it there for as long as possible. I've only had 2 chemo treatments so far and finished my radiation to my head. Now I've started radiation on my lung.

I was just diagnosed less than 2 months ago. Acutally on Sept 1 2008. I went to the emergency room for a very bad headache and next thing I knew I was in an ambulance on my way to Grand Rapids. They had found a tumor in my brain. When I got to GR, they did a full cat scan and found the original tumor in my lung. The one in my head was operable and they operated on Sept 4. The one in my lung is inoperable because it's wrapped itself around my pulminary arterty. I will be on chemo until it is in remission. No idea how long that will be yet. After my 3rd treatment I will have another PET scan to see if the chemo is doing what it's supposed to. If it is, we keep going. If not, we switch to another medicine and see if that works better.

As for being on chemo for rest of his life, I don't think they do that. but he will have to be checked every few months after he's in remission. It will come back and the treatment starts over again. How long before it comes back is any body's guess. Some people can go years in remission. I just met a man in chemo this week who is finally in remission after being on chemo for 3 years. He refused to give up. The whole goal is to shrink it into remission. That's the best we can hope for. I say, get me in remission and I will see how long I can stay there.

Good luck with your dad. As things go on and I ask more questions, things seem to become understandable.

Diane03

dakota770 said:

Hi Catman
Catman,

Sounds like your father and I have the same thing. Incurable means it will always be there with a chance of it coming back. The hope is to get it in remission and keep it there for as long as possible. I've only had 2 chemo treatments so far and finished my radiation to my head. Now I've started radiation on my lung.

I was just diagnosed less than 2 months ago. Acutally on Sept 1 2008. I went to the emergency room for a very bad headache and next thing I knew I was in an ambulance on my way to Grand Rapids. They had found a tumor in my brain. When I got to GR, they did a full cat scan and found the original tumor in my lung. The one in my head was operable and they operated on Sept 4. The one in my lung is inoperable because it's wrapped itself around my pulminary arterty. I will be on chemo until it is in remission. No idea how long that will be yet. After my 3rd treatment I will have another PET scan to see if the chemo is doing what it's supposed to. If it is, we keep going. If not, we switch to another medicine and see if that works better.

As for being on chemo for rest of his life, I don't think they do that. but he will have to be checked every few months after he's in remission. It will come back and the treatment starts over again. How long before it comes back is any body's guess. Some people can go years in remission. I just met a man in chemo this week who is finally in remission after being on chemo for 3 years. He refused to give up. The whole goal is to shrink it into remission. That's the best we can hope for. I say, get me in remission and I will see how long I can stay there.

Good luck with your dad. As things go on and I ask more questions, things seem to become understandable.

Lung
Good luck with your chemo- I have the same- lung wrapped around my pulmonary artery. I also have it on my adrenol glands. I am being told they hope to make my cancer manageable- a chronic disease-
You're right you have to ask questions and be able to comprehend exactly what is happening.
I used to live in Livonia Michigan. Tlak about a cold winter state brrrrrrrrrrrrrrrrrrr.

Good Luck

dakota770

Diane03 said:

Lung
Good luck with your chemo- I have the same- lung wrapped around my pulmonary artery. I also have it on my adrenol glands. I am being told they hope to make my cancer manageable- a chronic disease-
You're right you have to ask questions and be able to comprehend exactly what is happening.
I used to live in Livonia Michigan. Tlak about a cold winter state brrrrrrrrrrrrrrrrrrr.

Good Luck

Hi Diane03

I used to have a girlfriend that lived in Livonia. We are on the other side of the state. We actualy get more cold and snow than you did. With Lake MI right there, we get more lake effect than you did. But the favorite saying around here is, "If you don't like the weather, wait 5 min and it will change".

As for asking questions, I do it all the time. In fact it's gotten to be kind of a joke around the center. They are learning to talk "English" to me. I insist on it. I tease the Dr's about the difference between Dr talk and English. My Dr's are getting great at drawing diagrams too. Now I get all kinds of papers about the meds they have me on for chemo, exactly where they are giving me radiation, etc. They now try to be prepared for me and it's a game to see if I can come up with a question they didn't "prepare" for.

How are you doing? Are you in remission? Or are you still in treatment? Let me know how you are doing.

Wendee

Diane03

dakota770 said:

Hi Diane03

I used to have a girlfriend that lived in Livonia. We are on the other side of the state. We actualy get more cold and snow than you did. With Lake MI right there, we get more lake effect than you did. But the favorite saying around here is, "If you don't like the weather, wait 5 min and it will change".

As for asking questions, I do it all the time. In fact it's gotten to be kind of a joke around the center. They are learning to talk "English" to me. I insist on it. I tease the Dr's about the difference between Dr talk and English. My Dr's are getting great at drawing diagrams too. Now I get all kinds of papers about the meds they have me on for chemo, exactly where they are giving me radiation, etc. They now try to be prepared for me and it's a game to see if I can come up with a question they didn't "prepare" for.

How are you doing? Are you in remission? Or are you still in treatment? Let me know how you are doing.

Wendee

Hi Wendee
I'm doing okay. I have good and bad days. Right now, for the first time in 4 months, I am feeling pretty good.
No one has ever mentioned "remission." I've been told the goal is to make it a manageable, chronic disease. Unfortunately, my body is not agreeing with the types of chemo the doctor has tried. I rejected the platin family, I am also not fond of gemzar, so today I tried Alimtar (I think)
Between 4 weeks of radiation and all of the drugs, the lung tumor has decreased to 1/2 it's original size. They hope to blow away the new tumors with the alimtar (however it's spelled). I just hope no new ones pop up during this regime of treatment and the lung continues to shrink.
I'll be thinking of you!
Be safe-
Diane

Greggriggs

blondie1 said:

Stage IV Non-Small Cell Adenode Carcinoma
I am a 56 year old female diagnosed with Stage IV NSCAC in June 2006. I had a tumor in each lung and involvement of the lymph nodes on both sides of the beastbone. I also had cells floating behind my tonsils. I started on Carboplatin, Taxol, and Avastin in July and continued until Nov. 2006. The treatment was grueling with horrible flu-like symptoms and severe nausea. Around the third treatment I developed neuropathy in both feet. By the last treatment I thought I truly was going to die from the treatment. But I didn't and went into remission for a year. In January of 2008 one tumor in one lung had returned. I started a regimine of Taxotere that lasted until April of 2008. The side effects were similar but not so severe. A new side effect was the loss of my toe nails and my fingernails got small ridges in them. My hair has since started to grow back with one small area on the top of my head still very sparse. My eye lashes are slower to grow back and are very skimpy. The tumor was still there at the end of treatment. Very small, but still there. It also is stable (not growing). I am on observation until November when I will get another C-Scan to see how things are going. There are a couple of very promising treatments in the trial stage - so there is always hope. My understanding is that they will try new treatments until it becomes a question of quality of life vs. treatment. Most treatments really take a toll on the body, with some of the side effects being permanent - like my neuropathy. I imagine at some point the treatment will not seem worth it. But for now I am good and have returned pretty much to normal; treatment of the neuropathy has brought some relief - but it is still there.

Grueling
Hi All.
I did the carbo an taxol .Some times I wonder if I did the right thing .They removed my left lung an some lymphs.
You are right blondie It sure puts the hurts on your body I dont think I had a wrinkle on me that did not hurt... It has been almost 3 years I still have pain in my feet hands an skin .
My blood is a mess nothing is normal red cells are low white cells are high sed rate is high an so on.
One thing your hair an eyebrows will grow back . I looked like a new born except for the hair on my legs never fell out whats with that???
I tried all the Meds for the neuropathy they have me on prednasone an some chemo drug called meathotrexate . it does not seem to work eathier . I think the taxol an carbo does it's damage an I don't know how long it takes to get over it if you ever do. I am 67 years old an had a pretty good life so I can't complain to much.
Thank God for Insurance God Bless you Mary hope you can get some help some where I feel so sorry for your Hubby I can not imagine what he is going through.

Good luck to all of you I always wondered why they said Cancer was a fight Now I know so all of us will have to fight back as hard as we can.
Greg

marybear

not treatable
Hi Gregg just got your post hubby ok still cant walk good damm neurpathy he is taking tarceva the once a day chemo pill got bad diahrea yesterday had to stop it now once every other day he lost his eyelashes recently been to optomologist 2 weeks ago going back on friday they are still coming out eyes are irrated dont know if this is from tarcea will find out soon hope you are well hang in there talk to yu soon mary