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Dad diagnosed with Stage 4 lung cancer that has spread to brain and other places

laurenr
Posts: 12
Joined: Apr 2009

My dad, who is 69 years old, and quit smoking 25 years ago, and has been a health nut ever since, including riding in the MS 150 10-15 years, started feeling strange. He told us on March 20, 2009 that he was having memory problems and problems walking and keeping his balance. We agreed that we would take him to a doctor on Monday, March 23, however, he fell down on Sunday, March 22, and could not get back up for a few minutes. We took him to ER at 8 a.m. and by 10:30, were hit with the shocking news that he had cancer in his brain, which led them to run more tests, where they located a 14 cm mass in his lung and spots in his other lung, adrenal gland, and liver. The ER doctor basically made it sound like he would not be leaving the hospital. He was admitted, we met with an oncologist who said she would be starting him on radiation for the brain on Wednesday, March 25. When my dad asked about his prognosis, she said it was an average of 6 months, which hit us all hard. However, he is a fighter so we all agreed to fight with him. He just finished 10 radiation treatments and starts chemo next Wednesday, April 15. He will have 3 drugs, 3 in week 1, 2 in week 2 and 1 in week 3, and will repeat this treatment cycle for 6 times total, 18 weeks in all. His oncologists have been great, they never once said that there was nothing they could do.

The radiation has made him very tired and his hair is almost gone now, and he is very emotional, of course. We cook whatever he wants so we can keep his weight up. Even at his healthiest, at 5'10", he only weighed about 145, and right now he's about 138, but we're trying hard to keep him strong. Hopefully, all his years of eating well and exercising daily will help him during this time.

This website and the stories I've read have been very helpful. I've told him that he has no expiration date and that miracles do happen, and he agrees and plans to keep fighting. Some people have told us that we should do no treatments and let him live his life. My dad is not like that though. He has to fight, no matter how exhausted or sad he is, and he will continue fighting. My brother and sister and I have banded together and are doing everything we can to support each other and him and stay as positive as possible. We cry with each other, and we let him cry whenever he wants, and we try to remember that things happen for a reason.

Good luck to everyone out there fighting this fight and those who are supporting the people fighting this fight. May a cure be found soon.

dreamsraih's picture
dreamsraih
Posts: 5
Joined: Apr 2009

you are very positive and that is the best way to be my moms 63 and your story sounds just like mine my mom has stage 4 small cell carcinoma and the cancer has spread everywhere the doctors are not that good but we continue to fight

laurenr
Posts: 12
Joined: Apr 2009

Thanks for your kind thoughts and words. When was your mom diagnosed and what was her prognosis? They are telling us that if the chemo helps at all, he might have a year, but if it doesn't help (after the next scans in 6 weeks), he has 4 to 6 months. They are just numbers but I like to compare. Dad had his first chemo today and did really well. So far. We pray constantly. Thank you.

GAILLI
Posts: 2
Joined: May 2009

My sister who is 61 had a similar situation as your father. She was falling down at work and her memory was affected. We took her to the ER and they did a cat scan and then a lung xray and it showed that she had lung cancer that spread to her brain. She has several lesions on her brain and she saw a Neuro Oncologist that wants her to start radiation treatments. As far as the lung is concerned,they recommend that she get chemo/radiation therapy but they want to wait until her radiation treatments are finished. She is going for a consultation with the radiologist and we will know more after her appointment. She has a positive attitude and she seems to be handling it well. SHe was told that if she does nothing, she will have 6 months, if she has the treatment, she will have a year, maybe 2. We are not happy with her oncologist - we are in the process of finding another one. I know that we have a long road ahead of us and all we can do is keep strong for one another. I wish you and your family well.

laurenr
Posts: 12
Joined: Apr 2009

I wish you and your family well too. Dad was diagnosed on March 22 with lung cancer spread to brain and other areas. They started radiation on March 25, 10 treatments over a 2 week period. One week later, he started chemo and this Tuesday, we are having scans done again to see the progress. They do them every 6 weeks to see if the treatments are working. Dad is doing a lot better since he was diagnosed 8 weeks ago and we are very hopeful. We were told that he would have 2-4 months without the treatment, and possibly a year with the treatment. We are very hopeful. He is doing well, better memory, more strength, etc. I'm sorry you are not happy with your onco, we got lucky, maybe, as dad is pleased with her.

Again, our prayers our with you and everyone out there who is fighting this terrible fight.

GAILLI
Posts: 2
Joined: May 2009

Did you ever consider getting a second opinion on the treatment? Sloan Kettering is nearby and I don't know if it would make a difference as far as my sister is concerned. Any thoughts?

yasmin77
Posts: 1
Joined: Dec 2011

My mom who is 56 had a similar situation as your father. Three weeks ago, she fell several times, banged her head, couldn't speak, couldn't walk, very emotional, couldn't tie her shoe laces and put on her seat belt. It was devastating seeing my mother this way as I always knew her as someone who was healthy, full of energy, independent and workaholic. She is a nurse, who is by the way, the worst patient because she is very stubborn; she is used to taking care of people instead of receiving help, so often times, she refuses to get help. Two weeks ago, They did a cat scan and MRI and it showed that she a 3cm brain tumor that needed to be removed asap and 4 smaller lesions on her brain. The neurologist removed the tumor and the biopsy result said, squamous cell carcinoma lung cancer that has metastasized to her brain, lymph nodes and chest. We saw her oncologist and she was diagnosed with a Non-Small Cell Lung Cancer (NSCLC), stage 4. This is a puzzle for us because she never smoked in her entire life. The Oncologist said she has about 6 months to live if she didn't do any treatments. She has recommended for my mother to start radiation treatments and so far, she has had 3 treatments. We took the doc's advise to get a second opinion from MD Anderson Cancer Center in Texas and get the pathology report in two weeks so wish us luck. She'll do PET scan soon... The Oncologist is not 100% sure what type of lung cancer she has because she thinks my mom may have adenocarcinoma lung cancer. If she has this type and her result is positive for Epidermal Growth Factor Receptor (EGFR), then she can start taking tarceva pills and if not, then chemotherapy treatments for up to 4 months. She has a positive attitude and seems to be handling it really well. She can now speak, walk and slowly getting her old self. I am hopeful especially after finding out that the Oncologist had patients who lived for 5 years while taking tarceva. My mother is strong and I know she'll push herself to live longer as I am getting married on 3/31. She has a positive outlook and lots to look forward to like having a grandchild, hopefully, next year. We have to be strong for each other and I am so glad I found this site and have people to talk to. I wish you and your family well. Happy New Year!

laurenr
Posts: 12
Joined: Apr 2009

We did not get a second opinion officially. We were pleased with how fast they set up the treatments for dad, and with how aggressive they wanted to be.

I did go online to the Cancer Treatment Center (I'm not sure of their exact name, but they advertise on TV) and had a chat online with one of their oncologists. She said that it sounded like he was getting good care, and the treatment went along with what they would recommend.

Pitapocket
Posts: 16
Joined: May 2009

Hi, my name is Kellie and my dad also had stage 4 nsclc. I know it is a tough road, but when I read your story I realized how positive and supportive you and your siblings are with your dad. I just wanted to offer support to you, and encourage you to continue to do what you and your dad feel is right for him. My dad declined the chemo but took the radiation. When his cancer was first diagnosed it was in his lung, skull, adrenal glands, liver, spine, and pelvic area. They told him 6 months without chemo and a year or better with it. Dad lived for 8 months, but his quality of life was good up until the last month. He ended up falling and breaking his hip. Exactly one week later (October 10, 2007), we lost him. I miss him terribly each day. We were very close and he was a wonderful person. I am very proud that I got to be his daughter. Good luck to you and your dad. It sounds like you have a close relationship with him and that is a precious gift that you will always have. You are doing a good thing. You will be in my thoughts.

laurenr
Posts: 12
Joined: Apr 2009

Thank you so much for posting. It's always nice to hear someone else's story. Yes, my dad and I are very close, just like you and your dad. We count every day as a gift and we are all supporting each other and making every day as special as we can.

They gave dad 4-6 months without chemo and radiation and about 12 months with it. So far, he is handling the chemo fairly well, but he has been depressed the last couple days. It's been 8 weeks since his diagnosis and it's starting to set in that this is permanent. We have my daughter's high school graduation Thursday and we are taking him to Nebraska for his alumni banquet on Saturday. He will get to see his mom, coming from South Dakota, who he hasn't seen since November. At the time he was diagnosed, the alumni seemed so far away and I think he hoped he would be feeling much better by the time it arrived. He's doing so well, compared to when he was diagnosed, but it's still hard for him.

Today he had scans which they do every 6 weeks during chemo to see how he's responding. these are the first scans since the diagnosis so we will see if the radiation helped with his brain lesions and also to see if the chemo is helping. We are very hopeful but also very nervous. We know he's improving but I don't know how he will take the news if they tell him that the chemo is not helping. And we know that could happen.

Take care, and thanks again for posting. Please feel free to post again with any other stories or email me. lrowe@kc.rr.com. It helps to know there are others going through what we are, or who have gone through it.

joeg112
Posts: 1
Joined: Jun 2009

sorry i deleted

JonL
Posts: 1
Joined: May 2009

I read Lauren's post and it was almost a carbon copy of my dad's experience. He's 75, non-smoker for the last 20 years, daily walker and healthy by all accounts. He experienced the same symptoms of memory loss, loss of stability, unable to get up out of chair. It seemingly came out of nowhere. On Good Friday in April, we took him to the E.R and got the results of cancer that had spread to his brain.

He did 3 weeks of radiation for the brain leasions, no chemo. My mother and him decided against it. Our family is making plans for a memorable summer with him and arranging for the things that he wants to do.

Although he's not in denial of his condition, he doesn't care to talk about it much. He said its always on his mind and doesn't see the benefit of talking about it and would rather spend the time talking about something else. We all are very respectful of that, but sometimes its very hard to try to maintain a cheerful demeanor when every moment you wonder "will this be the last time we.... (fill in the blank)

I can't imagine how it must feel for him. He keeps such a positive attitude, so I want to be positive for him.

I miss him already and just hate the thought of the things to come for him.

I'm personally torn between acceptance of his condition and the desire to seek out non-traditional treatments. There is so much information on the web about miracle cures, homopathic regiments and all of the "What Your Doctor Doesn't Want You To Know About Cancer" type information. I can now appreciate the desperation people feel and the desire to dare to hope in any of these. Can anyone share some truth and reality about any of this?

Jon

laurenr
Posts: 12
Joined: Apr 2009

Hi Jon,

I hope we get some responses from people who have looked into and/or tried these non-traditional treatments. We have not tried anything with dad, as we have been extremely busy just doing the chemo and taking care of him. He is SO much better than he was 9 1/2 weeks ago when we took him to ER. The results of the scans were awesome! The brain is much improved and the lung tumor is shrinking. The oncologist says he is still terminal and incurable but the treatments are improving his quality of life, which was her main goal.

We go back and forth -- sometimes we talk about it and sometimes we don't. We kind of leave it up to dad. He's usually really positive and so we talk about things to do to make him stronger. Or we talk about things that he wants to do. Our attitude is pretty much "ok, he might be here for 6 months or he might be here for 20 years. Either way, let's live every day to the fullest and enjoy every minute." That way, we've done our best no matter what.

Dad did get weepy and emotional a week or so ago. He said he felt fine physically, he was just emotional. After previously saying no, this time he agreed to try an anti-depressant. That has helped a lot.

Hang in there, and know that you're not alone. There are lots of us out here, praying and thinking positive and doing our best to tackle this.

Lauren

medic084
Posts: 1
Joined: Jun 2009

Your comments have been inspirational. My uncle was just diagnosed with Lung cancer, both right and left and liver cancer. He has started treatments and we are hopeful he will get better. Unfortunately we dont know the prognosis, whether it is small cell or non small cell, or even the stage for that matter. He refuses to share with anyone. He has the strongest chemo treatments every 21 days, with blood work before each treatment. This leads me to believe its bad. I just wanted to share with you what an inspiration your story is to everyone. Thank you.

Kim1214
Posts: 2
Joined: Sep 2010

Lauren...

My mother in law has just been diagnosed similarly as your father. How is he doing?

Eric.Gao
Posts: 1
Joined: Nov 2010

My father in law has just been diagnosed that the lung cancer spread to his brain today.
Now,he is narcose & my wife accompany him in hospital. I seek the help via internet.It's very lucky to find all of you & your comment / stories. It will encourage us to face the further treatment,fight against the cancer. But i really want to know your situation now.Has God gave his mercy to us? I hope to get your good news.

Your reply will be highly appreciated.

God bless you!

Eric Gao
In China

MadelynJoe's picture
MadelynJoe
Posts: 96
Joined: Sep 2003

Dear Jon:

I am a 4 year nonsmall cell lung cancer survivor. I would encourage your dad to seek treatment. Lung cancer does not have to be a death sentence! Check out your options! I had a CAT scan last Thursday and I am still cancer free. There are people on this site that have been given a "terminal"/stage 4 diagnoses and have come through. Keep the faith and try to talk your dad into seeking treatment.

Best regards,

Madelyn

Rose20006
Posts: 1
Joined: Feb 2013

Hi My mom has been diagnosed with stage 4 lung cancer that has spread to the lymph nodes and now the brain as well. She is constantly confused, has memory loss, vision loss, and her motor skills are just not there anymore. She has not fallen which is great and up to now, she has not had much pain. She has had 2 strokes and it's during her stay in the hospital during her last stroke that we all found out about her cancer. That was 2 months ago. We also found out that she has a stomach aneurysm that can rupture anytime and if it does, she will have 5 or 10 minutes of dire pain and then she'll be gone. The doctors will not perform surgery on her cancer nor her aneurysm saying chances are that she will die on the table. She is refusing any kind of chemo or radiation and just wants to live out the rest of her life with family and enjoy as much as she can. We just want to do what she wants and are trying our best to support her and each other. Oh I forgot to say that she is 80 years old. She smoked for over 50 years but quit over 10 years ago.

I feel for everyone going through this and I just stumbled on this site and I think it's great.

Lori37191
Posts: 2
Joined: Nov 2010

Hi, I read your story, and it was like I was reading a copy of my life. My dad is 68 and on November 15, this year is was told he had multiple tumors in the brain. and a few days later a spot on his right top lung.
We took him to the ER on the 15th with the same symptons as your dad, dizzy, staggering, knocking stuff over. They did test and come back with the new of the brain tumors. Since then he has already had 7 radiation treatments and is doing good. He also has had 2 catscans of upper and lower body, a bone scan today and a biopsy of the spot on his lung. He has 3 radiation treatments left. The doctor has not given us any results to any test yet, we get that on December 2. We have met with two onconlogist, one that is treating the brain with radiation, and another for the spot on his lung. Dr. Patel, the one treating his lung, did say it was uncuralbe but prolongable. My dad has good spirits, but has been making final arrangements with banks, wills, ect. just in case. It seems like everything we get done, gives him a since of peace. He is optimistic. I have spoked to many people in the past 2 weeks, that had a parent or knew someone who had the same or simular to the same and has survived it and living life to its fullest. One thing I keep telling myself is that the Doctor is not God, therefore does not know the outcome of any situtation. Only God himself knows that, and he is in control. I went through this with my mom in 2006, She had ovarian cancer. carcenoma and sarcoma in the same tumor. The tumor was the size of a football and had a limb going down her leg. She chose not to do anything, no test, no radiation, no kemo. She lived 2 months. It was hard. but she did not suffer at all, except for depression. I will put your dad in my prayers, please keep us posted as to how he is doing. thanks for your story, Lori

Lori37191
Posts: 2
Joined: Nov 2010

well its been over 3 months since we found out dad had stage 4 lung cancer, which had gone to the brain and left 2 tumors there. He has has 10 radiation treatments, and 9 chemo treatments. Between each treatment he has had some severe side effects. first he got 2 blood clots in the lungs. This caused hard breathing and some pain. the put him on cumidin (a blood thinner) and sent him home after about 4 days. The cumidin level was too high and it caused internal bleeding which landed him back in the hosptial for another 7 days. He had to be given blood. He finally got to come home, but went back to the hospital with another lung blood clot, cause they lowered the cumidin level too much. since then he has had a blood clot in the leg, thrush in the mouth and loss of appetite. Dad has had no nausea, (Thank God). but his blood count is a constant check. He is getting tired and depressed. We are suppose to get the first cscan since the chemo on thursday the 24th. My hopes are high and i am asking God for a miracle. My dad is most of the time joking, and alive. I want to see him feeling good and being able to get out of bed. I am hoping there will be good news and it will give him some motivation.

MichaelLouis
Posts: 2
Joined: Jun 2012

Hello Lori,

When I read your letter, it was like reading a letter I had yet to write. My mother was diagnosed 1 week ago, and the shock of fear has completely taken over our lives. My mother is 72 years and and full of life. I was talking to my mother while driving home from work and noticed a serious problem with her speech and memory, which is very odd for my mother, because she has a great memory. I live in Washington, DC and she resides in Minnesota. I ask my younger brother to stop by the house, just to make sure that things were ok. My mother was unable to speak and didn't recognize who he was for a few moments. He rushed her to the ER where they did a scan and found 2 small tumors in her brain. They followed up with additional scans which showed cancer in her upper right lung. She had her first radiation treatment today, which has really sapped her energy. We are praying and believe that she is going to fight this and win. I want to thank you and all the others for your stories and well wishes. Please add my family and I to those prayers.

Michaell

MichaelLouis
Posts: 2
Joined: Jun 2012

Hello Lori,

When I read your letter, it was like reading a letter I had yet to write. My mother was diagnosed 1 week ago, and the shock of fear has completely taken over our lives. My mother is 72 years and and full of life. I was talking to my mother while driving home from work and noticed a serious problem with her speech and memory, which is very odd for my mother, because she has a great memory. I live in Washington, DC and she resides in Minnesota. I ask my younger brother to stop by the house, just to make sure that things were ok. My mother was unable to speak and didn't recognize who he was for a few moments. He rushed her to the ER where they did a scan and found 2 small tumors in her brain. They followed up with additional scans which showed cancer in her upper right lung. She had her first radiation treatment today, which has really sapped her energy. We are praying and believe that she is going to fight this and win. I want to thank you and all the others for your stories and well wishes. Please add my family and I to those prayers.

Michael

Teresa N
Posts: 1
Joined: Mar 2012

I just joined this and I was wondering. how is your dad. My friend and was just diagnosed with the same thing. I know the post were old, but I was hoping to find the outcome of your father.
Hope all is well, Teresa

Griggs
Posts: 1
Joined: Aug 2013

He 57 years old and hasn't smoked in years.  He is extremely agitated/angry at others and has significant memory problems - He was just dianosed last week and has yet to see an oncologist.  The doctor he did see said he had several masses on his brain.  Can cancer progress to to a late stge before you know you have it?

 

 

SBolin
Posts: 2
Joined: Aug 2013

Unfortunately yes cancer can progress to a late stage before diagnosis. My mother in law was diagnosed a month ago with Stage 4 lung cancer. The only reason we found out she had cancer was because it had metastasized to her brain. She was having symptoms very similar to a mini-stroke if you will...we took her to the ER and found out she had a brain tumor that developed due to the lung cancer. They removed the brain tumor successfully. They did this within a few days of finding the tumor. During this time they discovered the the lung tumor and determined she has stage 4 lung cancer. Prior to having symptoms that appeared to be a stroke she was perfectly fine. She even had a chest scan done within the year that did not pick up on anything abnormal. We have also learned it has spread to her lymphnodes. I am not sure why, but they will not do surgery to remove the tumor from her right lung bottom lobe. They have told us the lymphnodes that now have cancer present are inoperable. We have been given a lot of trying news, but we are very hopeful and feel positive we will get her in remission. Today was her first day of chemo and radiation. I will pray for your brother and family.

SBolin
Posts: 2
Joined: Aug 2013

Unfortunately yes cancer can progress to a late stage before diagnosis. My mother in law was diagnosed a month ago with Stage 4 lung cancer. The only reason we found out she had cancer was because it had metastasized to her brain. She was having symptoms very similar to a mini-stroke if you will...we took her to the ER and found out she had a brain tumor that developed due to the lung cancer. They removed the brain tumor successfully. They did this within a few days of finding the tumor. During this time they discovered the lung tumor and determined she has stage 4 lung cancer. Prior to having symptoms that appeared to be a stroke she was perfectly fine. She even had a chest scan within the year that did not pick up on anything abnormal. We have also learned it has spread to her lymphnodes. I am not sure why, but they will not do surgery to remove the tumor from her right lung bottom lobe. They have told us the lymphnodes are inoperable. We have been given a lot of trying news, but we are very hopeful and feel positive we will get her in remission. Today was her first day of chemo and radiation. I will pray for your brother and family.

dennycee
Posts: 667
Joined: Mar 2011

As the others said, it is possible that no symptoms may show up until stage four.  My moms nsclc was diagnosed because of brain mets.  There is a gentleman at the inspire.com website who was also diagnosed because of brain mets- her is in his 14rh year of survivorship.  

ask the dr about gamma knife for the brain mets. How many mutations did they test for?  Which onEs?  

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