Lung cancer with brain metastes

silm0209
silm0209 Member Posts: 9
edited March 2014 in Lung Cancer #1
Hello all,
I'm new to this board today and I'm sorry if I'm posting in the wrong section - I;ve no posted in brain cancer as well as lung cancer!

After several months of headaches which have got progressivley worse my close friend had a scan this week to be given the devastating news she has a tumor on her brain.

On Wednesday an MRI confirmed she also had a tumor on her lung. Today she goes for a biopsy.

However, drs have told her that they are certain it is cancer and the tumor on the brain is secondary to the lung.

We are obviously devastated and in shock. She is 35 years old with small children and only had a few headaches.

Drs won't given any more information until after the biopsy. However I have done the terrible thing of 'googling' and can not find any positive outcomes so far.

I;m hoping that by coming to the survivors network I may find somebody who has lived through this so we have a little hope that it is possible.

Thank you in advance

Comments

  • stayingcalm
    stayingcalm Member Posts: 650
    It's scary
    Hi silm,

    Is is most definitely scary to get news like this! All I can tell you is from my own experience, although my brain tumor didn't show up until I had been on a clinical trial drug for my lung cancer for a couple of years. The drug couldn't pass the blood/brain barrier and so didn't protect my brain from the stray cancer cells that like to go there ;P

    Surgery removed the main brain tumor - contrary to popular belief, brain surgery is pretty simple, for the patient, anyway! I went home 2 days after. I eventually had WBR (whole brain radiation) to get rid of lingering cancer cells. That's a whole other story, and if the time comes for that for your friend, there are alternatives out there that she might prefer.

    Tell her to make sure the docs send out tissue from the tumor to check for at least the EGFR and ALK mutations, so her doc will know if drugs like Tarceva and Crizotinib (in trials, still) are likely to work for her. It's also possible to have a tumor assay done, where the biopsy material is checked to see what chemotherapy drugs have more chance of working for her. I'm not sure how many insurance companies cover that, however...

    I went on Tarceva after brain surgery, which worked very well for me, put me in remission. I've just recently been told I have a nodule on my lung, but we've upped my tarceva dosage schedule (it's a pill) to everyday, and we'll see. I'm not worrying ;-)

    That's the story. I was dx 5 years ago, still kicking, still working, still making Thanksgiving dinners. I'm not inclined to go out and run a mile, but that's because I also have COPD ;-)

    I just want you and your friend to know it's not the end of the world, even if it seems that way!

    Best wishes and hopes,
    stayingcalm
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member

    It's scary
    Hi silm,

    Is is most definitely scary to get news like this! All I can tell you is from my own experience, although my brain tumor didn't show up until I had been on a clinical trial drug for my lung cancer for a couple of years. The drug couldn't pass the blood/brain barrier and so didn't protect my brain from the stray cancer cells that like to go there ;P

    Surgery removed the main brain tumor - contrary to popular belief, brain surgery is pretty simple, for the patient, anyway! I went home 2 days after. I eventually had WBR (whole brain radiation) to get rid of lingering cancer cells. That's a whole other story, and if the time comes for that for your friend, there are alternatives out there that she might prefer.

    Tell her to make sure the docs send out tissue from the tumor to check for at least the EGFR and ALK mutations, so her doc will know if drugs like Tarceva and Crizotinib (in trials, still) are likely to work for her. It's also possible to have a tumor assay done, where the biopsy material is checked to see what chemotherapy drugs have more chance of working for her. I'm not sure how many insurance companies cover that, however...

    I went on Tarceva after brain surgery, which worked very well for me, put me in remission. I've just recently been told I have a nodule on my lung, but we've upped my tarceva dosage schedule (it's a pill) to everyday, and we'll see. I'm not worrying ;-)

    That's the story. I was dx 5 years ago, still kicking, still working, still making Thanksgiving dinners. I'm not inclined to go out and run a mile, but that's because I also have COPD ;-)

    I just want you and your friend to know it's not the end of the world, even if it seems that way!

    Best wishes and hopes,
    stayingcalm

    Stayingcalm (Debbie) i want
    Stayingcalm (Debbie) i want to say your information, support, time and energey to the members here in Lung and Brain cancer boards is very much appreciated and your own battle with advanced NSCLC for the last 5 years provides inspiration to so many. Were lucky to have you.

    Steve
  • hope0310
    hope0310 Member Posts: 320

    Stayingcalm (Debbie) i want
    Stayingcalm (Debbie) i want to say your information, support, time and energey to the members here in Lung and Brain cancer boards is very much appreciated and your own battle with advanced NSCLC for the last 5 years provides inspiration to so many. Were lucky to have you.

    Steve

    Any updates?
    Hey slim, just wondering if your friend has gotten further test/diagnosis....
  • silm0209
    silm0209 Member Posts: 9
    hope0310 said:

    Any updates?
    Hey slim, just wondering if your friend has gotten further test/diagnosis....

    hi
    yesterday she went to

    hi
    yesterday she went to meet with her oncologist for the first time. He had he biopsy results. it is lung cancer that has spread to her brain. Next week she will undergo brain surgery to try and remove the tumor. then she will have radiation to the brain to try and kill any stray cancer cells.
    drs are more concerned about the 2 tumors on her lung (both in same side of lung) they will give her chemotherapy after the brain surgery.
    I think it is positive they are doing surgery and have a plan - but she has lost all hope
    it is devastating
    thank you for asking x
  • silm0209
    silm0209 Member Posts: 9

    It's scary
    Hi silm,

    Is is most definitely scary to get news like this! All I can tell you is from my own experience, although my brain tumor didn't show up until I had been on a clinical trial drug for my lung cancer for a couple of years. The drug couldn't pass the blood/brain barrier and so didn't protect my brain from the stray cancer cells that like to go there ;P

    Surgery removed the main brain tumor - contrary to popular belief, brain surgery is pretty simple, for the patient, anyway! I went home 2 days after. I eventually had WBR (whole brain radiation) to get rid of lingering cancer cells. That's a whole other story, and if the time comes for that for your friend, there are alternatives out there that she might prefer.

    Tell her to make sure the docs send out tissue from the tumor to check for at least the EGFR and ALK mutations, so her doc will know if drugs like Tarceva and Crizotinib (in trials, still) are likely to work for her. It's also possible to have a tumor assay done, where the biopsy material is checked to see what chemotherapy drugs have more chance of working for her. I'm not sure how many insurance companies cover that, however...

    I went on Tarceva after brain surgery, which worked very well for me, put me in remission. I've just recently been told I have a nodule on my lung, but we've upped my tarceva dosage schedule (it's a pill) to everyday, and we'll see. I'm not worrying ;-)

    That's the story. I was dx 5 years ago, still kicking, still working, still making Thanksgiving dinners. I'm not inclined to go out and run a mile, but that's because I also have COPD ;-)

    I just want you and your friend to know it's not the end of the world, even if it seems that way!

    Best wishes and hopes,
    stayingcalm

    Thank you!!! stayingcalm x
    Thank you!!! Thank you for sharing your story and giving us hope. She will undergo brain surgery next week then radiation to her head, then chemo for her lung
    I pray she will also be with us in 5 years time xxxx
  • silm0209
    silm0209 Member Posts: 9

    Stayingcalm (Debbie) i want
    Stayingcalm (Debbie) i want to say your information, support, time and energey to the members here in Lung and Brain cancer boards is very much appreciated and your own battle with advanced NSCLC for the last 5 years provides inspiration to so many. Were lucky to have you.

    Steve

    .

    .
  • hope0310
    hope0310 Member Posts: 320
    silm0209 said:

    Thank you!!! stayingcalm x
    Thank you!!! Thank you for sharing your story and giving us hope. She will undergo brain surgery next week then radiation to her head, then chemo for her lung
    I pray she will also be with us in 5 years time xxxx

    Moving forward...
    Good, there is a plan!!! With only being the one tumor and surgery an option, is a good thing. Like Deb said, brain surgery is no big deal. (hard to believe huh!?)

    Try to surround her with positive people, attitude is half the battle!!

    Be good to yourself!
    Elysia
  • cwilder
    cwilder Member Posts: 6
    silm0209 said:

    hi
    yesterday she went to

    hi
    yesterday she went to meet with her oncologist for the first time. He had he biopsy results. it is lung cancer that has spread to her brain. Next week she will undergo brain surgery to try and remove the tumor. then she will have radiation to the brain to try and kill any stray cancer cells.
    drs are more concerned about the 2 tumors on her lung (both in same side of lung) they will give her chemotherapy after the brain surgery.
    I think it is positive they are doing surgery and have a plan - but she has lost all hope
    it is devastating
    thank you for asking x

    What stage is your friends
    What stage is your friends cancer? My sister is stage 2b lung cancer and just finished her 2 chemo treatment and will get another cat scan on the 8th. Has the cancer in her lung passed to the lining of her lung?
  • david f
    david f Member Posts: 12
    lung and brain tumors
    Slim, my wife was diagnosed exactly as your friend. She had surgury for the brain tumor followed by 3 weeks of radiation. It is now completely gone according to the MRI she had on Nov 22. She was diagnosed with brain and lung cancer on June2. After the radiation treatment she underwent 4 chemo sessions using taxtol and avastin (spelling). According to the Ct scan done last Monday the tumor in her lung was reduced by half. The doctor was very excited to see that.
    The next treatment she will have is a phase two clinical study of Imetelstat. That is a maintence drug that is being tested at our Cancer center and shows pretty good promise for success on dilling of the cancer cells by attacking and enzyme called telomerase. We will find out more specifics on it tomorrow.
    I hope this gives you some positive hope for your friend.
    Dave
  • nanaof7
    nanaof7 Member Posts: 127
    david f said:

    lung and brain tumors
    Slim, my wife was diagnosed exactly as your friend. She had surgury for the brain tumor followed by 3 weeks of radiation. It is now completely gone according to the MRI she had on Nov 22. She was diagnosed with brain and lung cancer on June2. After the radiation treatment she underwent 4 chemo sessions using taxtol and avastin (spelling). According to the Ct scan done last Monday the tumor in her lung was reduced by half. The doctor was very excited to see that.
    The next treatment she will have is a phase two clinical study of Imetelstat. That is a maintence drug that is being tested at our Cancer center and shows pretty good promise for success on dilling of the cancer cells by attacking and enzyme called telomerase. We will find out more specifics on it tomorrow.
    I hope this gives you some positive hope for your friend.
    Dave

    never give up
    to make it short dx with lung cancer last year had surgery chemo and radiation 1 year later 3 brain mets given 3-6 months to live stage 4 now almost cancer free NEVER GIVE UP this site showed me not to believe statistics so many people on here have a suvivors story thats what kept my spirits up and got me through this so much positive feedback on this site
  • Lisa958
    Lisa958 Member Posts: 5
    Brain tumor/Lung tumors
    Slim0209,

    I am sorry to hear about your friend. Cancer is such a terrible disease, and I really wish they would either give out the cure, or find treatments that target only the cancer cells.

    The following is what my husband went through.

    My husband's first diagnosis with cancer was in June 2000. Stage 4 Melanoma. He had a mole, which had grown and spread the cells along his left upper arm. Surgery was done but at that time, there wasn't a lot of treatments for that stage of the disease. However, his surgeon was acquainted with a specialist in Pittsburgh, PA, who was doing clinical trials. Rodney decided to participate. After one year of the treatments and all the follow up tests, doctors appointments, etc., it appeared the clinical trial was working.

    In November 2010, he started complaining of headaches and kept dropping things. Finally he went to the ER and they diagnosed him with a brain tumor, which he had surgery to remove in December 2009. Pathology showed it as a secondary tumor. It took a month to find the primary tumors. Two small tumors, sitting on the lymph node, in his right lung. Finally, in February 2010, they started radiation therapy on the brain. In March, they started chemotherapy treatments. In August 2010, his PET scan showed the lung tumors were shrinking, so they put him on 4 more cycles of chemo. Then he started going numb on his right side, then falling. An MRI showed the brain tumor had returned. On 10/28/10, he had the brain tumor removed, and 5 gliodel wafers inserted, to kill of any lingering cells. He did well afterwards, but had a bit of problem with his short term memory and really bad headaches, which the doctors said had to do with brain swelling from the wafers and once the wafers dissolved completely, the headaches should go away. On 12/20/10, I came home from work, found him on the floor, trying to get up. He had fallen several times trying to get to the telephone to call 911. He was admitted to the hospital and on Christmas Eve we were given the news: the brain tumor was coming back; no more chemo, radiation, surgery...it was now quality, not quantity of life. On 12/31/10, I brought my husband home, under hospice care. I watched the life slowly seep away from him, and on 1/7/11, I was in our bedroom with him, when he passed. Until the very end, he was fighting it, he really had a lot to live for and I am really angry that cancer took him from us, at such an early age.

    All I can suggest is to keep a positive attitude, get second opinions, and ask the doctors any question that comes to mind, no matter how silly it may sound to you. Ask anyway.

    This is not easy to write, but it shows that you can survive the disease. Rodney was a 10 year survivor, before it came back.
  • z
    z Member Posts: 1,411 Member
    Lisa958 said:

    Brain tumor/Lung tumors
    Slim0209,

    I am sorry to hear about your friend. Cancer is such a terrible disease, and I really wish they would either give out the cure, or find treatments that target only the cancer cells.

    The following is what my husband went through.

    My husband's first diagnosis with cancer was in June 2000. Stage 4 Melanoma. He had a mole, which had grown and spread the cells along his left upper arm. Surgery was done but at that time, there wasn't a lot of treatments for that stage of the disease. However, his surgeon was acquainted with a specialist in Pittsburgh, PA, who was doing clinical trials. Rodney decided to participate. After one year of the treatments and all the follow up tests, doctors appointments, etc., it appeared the clinical trial was working.

    In November 2010, he started complaining of headaches and kept dropping things. Finally he went to the ER and they diagnosed him with a brain tumor, which he had surgery to remove in December 2009. Pathology showed it as a secondary tumor. It took a month to find the primary tumors. Two small tumors, sitting on the lymph node, in his right lung. Finally, in February 2010, they started radiation therapy on the brain. In March, they started chemotherapy treatments. In August 2010, his PET scan showed the lung tumors were shrinking, so they put him on 4 more cycles of chemo. Then he started going numb on his right side, then falling. An MRI showed the brain tumor had returned. On 10/28/10, he had the brain tumor removed, and 5 gliodel wafers inserted, to kill of any lingering cells. He did well afterwards, but had a bit of problem with his short term memory and really bad headaches, which the doctors said had to do with brain swelling from the wafers and once the wafers dissolved completely, the headaches should go away. On 12/20/10, I came home from work, found him on the floor, trying to get up. He had fallen several times trying to get to the telephone to call 911. He was admitted to the hospital and on Christmas Eve we were given the news: the brain tumor was coming back; no more chemo, radiation, surgery...it was now quality, not quantity of life. On 12/31/10, I brought my husband home, under hospice care. I watched the life slowly seep away from him, and on 1/7/11, I was in our bedroom with him, when he passed. Until the very end, he was fighting it, he really had a lot to live for and I am really angry that cancer took him from us, at such an early age.

    All I can suggest is to keep a positive attitude, get second opinions, and ask the doctors any question that comes to mind, no matter how silly it may sound to you. Ask anyway.

    This is not easy to write, but it shows that you can survive the disease. Rodney was a 10 year survivor, before it came back.

    Lisa
    Hello Lisa,

    I'm so sorry for your loss. I agree a cure or a way to treat just the cancer cells. Thank you for sharing your story, that cancer is treatable and your husband survived 10 years with a stage 4 cancer, as it does offer hope to us. I wish you well Lori.
  • Lisa958
    Lisa958 Member Posts: 5
    Lung/Brain
    I know what you mean about "googling"...I did it too and was more upset about what I found out, regarding positive outcomes, than I was about my husband's diagnosis.

    I do want to stress that keeping as positive outlook as possible, getting a second opinion regarding diagnosis and treatment, and taking things a day at a time really do help. Trust me, I have been there, as a spouse, taking care of my husband. I think that is why he survived as long as he did. He also kept busy, even though he couldn't go back to work, he did things around our home to help keep his mind off it, although he said it was always in the back of his mind.

    I will pray for you and your friend. Prayers do help.

    Take care.
  • Lisa958
    Lisa958 Member Posts: 5
    z said:

    Lisa
    Hello Lisa,

    I'm so sorry for your loss. I agree a cure or a way to treat just the cancer cells. Thank you for sharing your story, that cancer is treatable and your husband survived 10 years with a stage 4 cancer, as it does offer hope to us. I wish you well Lori.

    Z
    Thank you Z. I was lucky to have had him all this time after his initial diagnosis. I pray others on here have better luck, that they get a whole lifetime after diagnosis/treatment. I wish you well, also.
  • silm0209
    silm0209 Member Posts: 9
    Lisa958 said:

    Lung/Brain
    I know what you mean about "googling"...I did it too and was more upset about what I found out, regarding positive outcomes, than I was about my husband's diagnosis.

    I do want to stress that keeping as positive outlook as possible, getting a second opinion regarding diagnosis and treatment, and taking things a day at a time really do help. Trust me, I have been there, as a spouse, taking care of my husband. I think that is why he survived as long as he did. He also kept busy, even though he couldn't go back to work, he did things around our home to help keep his mind off it, although he said it was always in the back of his mind.

    I will pray for you and your friend. Prayers do help.

    Take care.

    Thank you all so much for
    Thank you all so much for your replies and sharing your stories.
    My friend has completed radio after brain surgery and is now on cycle 2 of chemo. Having a scan on her lungs next week just to see whats going on it there.
    She is very positive and has not given up at all.
    I pray for you all and your families xxx
  • It's scary
    Hi silm,

    Is is most definitely scary to get news like this! All I can tell you is from my own experience, although my brain tumor didn't show up until I had been on a clinical trial drug for my lung cancer for a couple of years. The drug couldn't pass the blood/brain barrier and so didn't protect my brain from the stray cancer cells that like to go there ;P

    Surgery removed the main brain tumor - contrary to popular belief, brain surgery is pretty simple, for the patient, anyway! I went home 2 days after. I eventually had WBR (whole brain radiation) to get rid of lingering cancer cells. That's a whole other story, and if the time comes for that for your friend, there are alternatives out there that she might prefer.

    Tell her to make sure the docs send out tissue from the tumor to check for at least the EGFR and ALK mutations, so her doc will know if drugs like Tarceva and Crizotinib (in trials, still) are likely to work for her. It's also possible to have a tumor assay done, where the biopsy material is checked to see what chemotherapy drugs have more chance of working for her. I'm not sure how many insurance companies cover that, however...

    I went on Tarceva after brain surgery, which worked very well for me, put me in remission. I've just recently been told I have a nodule on my lung, but we've upped my tarceva dosage schedule (it's a pill) to everyday, and we'll see. I'm not worrying ;-)

    That's the story. I was dx 5 years ago, still kicking, still working, still making Thanksgiving dinners. I'm not inclined to go out and run a mile, but that's because I also have COPD ;-)

    I just want you and your friend to know it's not the end of the world, even if it seems that way!

    Best wishes and hopes,
    stayingcalm

    mutation tests
    Hi Stayingcalm
    My Mom had the mutation test I believe and the Doc states she tested neg. that she could not go on Tarceva and that she would be on cisplatin and alimpta. Went for 2nd opinion at sloan and they sugg. carboplatin and alimpta so the Doc changed the chemo to what sloan sugg. and insight on this?
    Mom had nsclc- lung, brain,spine and pelvis...
    Had wbr and 1 tx of chemo so far.
    Thanks...Sleeplessinjersey
  • 3Mana
    3Mana Member Posts: 811
    Common
    HI,
    All I know is that when my husband was diagnosed last January, 2010, he had been diagnosed with lung cancer which by the way never showed up on a chest x-ray. Weird, huh? Anyhow they also said he had to have a brain scan bacause it's common for the brain to be involved with lung cancer. He had a brain scan and sure enough he had lesions. But had 2 weeks of radiation which greatly reduced the lesions. Unfortunately, he had 2 chemo treatments, one of which included Avastin. He had a rare side effect from Avastin and died on March 25th.
    Good luck to you & your friend. Hope she does okay with whatever treatment she has.
    "Carole"