Lung Cancer, now Brain Cancer

Grammasangel
Grammasangel Member Posts: 3
in Lung Cancer #1
I am really looking for info from people who have had similar experiences and hoping to gain insight that cannot be found on a "medical" website or from the doctors we are forced to deal with. My grandmother was diagnosed with Stage 4 lung cancer in May of 2011. Since that time, she went through Chemo and Radiation successfully until the last "triple dose" chemo sessions that nearly killed her. She had her last treatments in October. She had a her entire right lung removed and they were supposedly keeping an eye on a smaller node in her left lung. She began to get stronger, breathing was getting better, but she had a lingering cough. The doctors put her on a steroid that she took for a few weeks. Her last day on the steroids was Christmas day of 2011. The next day she began to decline rapidly. By New Year's weekend she was in the hospital. They told us that the cancer had moved into her brain and she now had three tumors. They were providing pallative care and were giving us several different prognosis but no one seemed to know anything for sure and they were treating her as though she was a goner for sure. After four days of doctors and nurses who had their heads up their rears, they finally told us they were going to do something. They decided to put her through another radiation gauntlet. Full brain radiation. She is already having cognitive difficulties and I am afraid of the horrendous side effects produced by full brain radiation, both acute and future. Does anyone have any experiences they can share with me? I am just not sure what to expect and I want to be there for her as much as possible and be able to give her knowledge so that she, too, will know what to expect. The doctors are of no help whatsoever so I am turning to a like-minded community for help. Thanks in advance.

Comments

  • dennycee
    dennycee Member Posts: 857 Member
    #2
    My mom's wbr experience
    may be different from yours but the similarities may be more important. It is true that there will be some confusion (maybe a lot). Left untreated those 3 spots will grow. Mom experienced excruciating, debilitating, paralyzing pain. WBR brought an end to that pain so she could function. Those cognitive disabilities she is experiencing may be caused by those tumors and, if they are they could get worse. I can send you my private email and phone if you would like to talk.
  • Dapsterd
    Dapsterd Member Posts: 291
    #3
    Lung/Brain
    Hello There!

    I am 48 yr old male with stage IV lung cancer, it is stage IV because 3 tumors where discovered in the brain in Nov. 2011. It is still lung cancer, even though it is in the brain now.
    There may be alternatives to WBR (whole brain radiation).
    I had one tumor surgically removed, the other two where gamma-knife, you should ask about this.

    There must be a good reason why they cant do the gamma-knife, it is much less trouble overall.

    Dave
  • padbergroup931
    padbergroup931 Member Posts: 1
    #4
    Dapsterd said:

    Lung/Brain
    Hello There!

    I am 48 yr old male with stage IV lung cancer, it is stage IV because 3 tumors where discovered in the brain in Nov. 2011. It is still lung cancer, even though it is in the brain now.
    There may be alternatives to WBR (whole brain radiation).
    I had one tumor surgically removed, the other two where gamma-knife, you should ask about this.

    There must be a good reason why they cant do the gamma-knife, it is much less trouble overall.

    Dave

    Believe yourself
    Hi there, believe yourself. You can get better. Lung cancer can be treated very well. - auto loan calculator
  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    #5
    I agree with Dave
    look also into gamma-knife.
    My Mom is stage 4 had brain surgery and WBR, however she is experiencing a little short of a year later confusion etc...Definitely look into all your options.

    I know the feeling of sitting in the hospital and just wondering is this one going to have an answer today??
    Get 2nd opinion if you can.
    Continue to stay positive and fight the fight!!
    God Bless
  • Grammasangel
    Grammasangel Member Posts: 3
    #6
    sleepless in jersey said:

    I agree with Dave
    look also into gamma-knife.
    My Mom is stage 4 had brain surgery and WBR, however she is experiencing a little short of a year later confusion etc...Definitely look into all your options.

    I know the feeling of sitting in the hospital and just wondering is this one going to have an answer today??
    Get 2nd opinion if you can.
    Continue to stay positive and fight the fight!!
    God Bless

    Thanks and Update
    Thanks to everyone who posted a response. We are trying to stay positive. Gramma has undergone the full brain radiation. They told us they could only remove one tumor of the three in her brain and they still have yet to address the lung cancer in her remaining left lung. I asked her many doctors about the gamma-knife, I found many reports that WBR is now considered a last ditch effort if better methods fail, but her doctors seemed oblivious to the newer technology. They basically said they don't know much and I was left wondering how they even drove themselves to work and shuddered at the thought. She has Kaiser, and I am sad to report that their "medical expertise" has done nothing but made her situation worse. We have tried to convince her to go elsewhere to at least get a second opinion, however, her reasoning seems to be going now and she doesn't want to go anywhere else although she admits she does not trust the doctors either. They have also started to take her off of steroids (the only thing keeping the swelling of the tumors down) and now we are worried about the horrendous steroid side-effects of those. The best part is that Kaiser informed us that they won't be doing another scan of her brain for at least 3 months and we will "...know if it worked if she gets better. If she gets worse, it didn't work." Wow, I didn't know Medical schools gave out degrees in Cracker Jack's boxes, obviously that's where these people got theirs. I am sorry to be on a soapbox here, but this is all very frustrating. Again, I really appreciate all of your feedback. I am very grateful for the CSN, it makes this a millimeter easier to deal with. We will keep fighting and staying positive, thanks again!
  • amron
    amron Member Posts: 15
    #7
    padbergroup931 said:

    Believe yourself
    Hi there, believe yourself. You can get better. Lung cancer can be treated very well. - auto loan calculator

    mother has stage 4 lung cancer and brain
    Hi, i am new here. I feel like it would help me and my family in dealing with my moms condition in joining here. I cry like evryday, I live here in Canada but my mom and 2 sisters were in the Philippines. Last Januar, my mom was diagnosed with stage 4 lung cancer that spreads to her brain. As of now she's doing okey, the only thing that is bothering her is the pain in her lower back. Is there realy a survivor for lung cancer? It would really make me happy if someone out there would write to me about their battle with these horrible sickness. Please help me...im having panic attacks everyday just the thought of loosing her. We don't want to give up, but we don't have enough money especially for her medications.
  • mamacita5
    mamacita5 Member Posts: 254 Member
    #8
    Grammasangel said:

    Thanks and Update
    Thanks to everyone who posted a response. We are trying to stay positive. Gramma has undergone the full brain radiation. They told us they could only remove one tumor of the three in her brain and they still have yet to address the lung cancer in her remaining left lung. I asked her many doctors about the gamma-knife, I found many reports that WBR is now considered a last ditch effort if better methods fail, but her doctors seemed oblivious to the newer technology. They basically said they don't know much and I was left wondering how they even drove themselves to work and shuddered at the thought. She has Kaiser, and I am sad to report that their "medical expertise" has done nothing but made her situation worse. We have tried to convince her to go elsewhere to at least get a second opinion, however, her reasoning seems to be going now and she doesn't want to go anywhere else although she admits she does not trust the doctors either. They have also started to take her off of steroids (the only thing keeping the swelling of the tumors down) and now we are worried about the horrendous steroid side-effects of those. The best part is that Kaiser informed us that they won't be doing another scan of her brain for at least 3 months and we will "...know if it worked if she gets better. If she gets worse, it didn't work." Wow, I didn't know Medical schools gave out degrees in Cracker Jack's boxes, obviously that's where these people got theirs. I am sorry to be on a soapbox here, but this is all very frustrating. Again, I really appreciate all of your feedback. I am very grateful for the CSN, it makes this a millimeter easier to deal with. We will keep fighting and staying positive, thanks again!

    So Sorry to hear about your Gramma.
    I am sorry to hear about the experience you are having with Kaiser. I am also a Kaiser patient in San Diego County and have received nothing but top notch treatment. It may be time to ask for a new oncologist. I wish your Gramma the very best and hope that you will find an oncologist you can trust.
  • Grammasangel
    Grammasangel Member Posts: 3
    #9
    mamacita5 said:

    So Sorry to hear about your Gramma.
    I am sorry to hear about the experience you are having with Kaiser. I am also a Kaiser patient in San Diego County and have received nothing but top notch treatment. It may be time to ask for a new oncologist. I wish your Gramma the very best and hope that you will find an oncologist you can trust.

    Struggling to Cope- a warning about family
    Its been a few months since I have been on. My grandma passed away February 17th of this year and I have had a tremendous time dealing with it. She was more of a mother to me than my mom and she was my best friend. I lived with her for the past 12 years of my life. She helped me get through school and we did everything together. The Whole Brain Radiation did not help. And the cancer in her left lung turned out to be a rapidly growing type that was not the same as the original cancer in her right lung (which had been snuffed out and removed). I am not writing here, though, to be sad. Instead, I want to let everyone know how much your posts helped me. I didn't feel alone and I gained alot of insight from all of you on the CSN.
    Something I hadn't realized was how destructive the situation would be on my whole family. Grandma was the center of our world and when she got sick, we all rallied together and supported her. My mom took care of her once Kaiser released her to die at home because they decided to not do anything else to help her. So, my mom ended up going off the deep end when my grandma really needed care. She kept trying to take days off, which is acceptable, but she wanted them when other relatives were working and could not be there for my gram. I was not physically capable of handling some of gram's needs, she weighed about the same as me and rolling her, etc was very challenging for us both.
    My mother's selfishness got so bad that she started to tell me not to encourage gramma to keep fighting. "Just let her go" she kept telling me. I would rebut "She doesn't want to go, she wants to fight." I told my gram from the beginning that I would support her either way, stay and fight or let go. After gramma passed, my mom then set to spending all her energy trying to get all of the money she could from my grandma's estate. It got to the point where she allowed her fiancee to physically threaten me in order to intimidate me out of my grandma's house, which had been my home for 12 years and where she lived for 32. She wanted in so she could rip everything out and remodel it so she can sell it. This was a shock for my whole family. No one thought that any of us would get greedy. Grandma worked hard her whole life and we all got way more than what we deserved.
    I write this to give an insight, I did not think this would happen. We are a tightly knit family. I moved out of state over one weekend and have ceased contact with my mother. I am a loving, caring, and forgiving person but she crossed a line that can not be overlooked. It is truly a sad thing when someone "copes" by trying to take as much as they can from others and she feels justified because she took care of my gram for a month. I took care of her for 12 years and all I want is my gramma back. Please be weary of people, you will notice small signs from those who will lose it. Don't ignore those signs, like I did. Be diligent. And stand by your sick loved one, they need you. Don't give up and don't let them give up. Even though my gramma didn't make it, I still believe that this is a survivable disease. Its ok to cry, its ok to feel overwhelmed, and its ok to share those feelings. We all put on a brave front, but it isn't necessary. You are scared, and they are scared too. Support each other no matter what, and you will get through it.

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