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cancerloss's Message Board Messages

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First, I commend you for your loving support for your husband! This journey is a tough one...real tough. My sisters and I have been on it with our mother. She battled the same cancer with the same exact mets. She was told by some of her doctors that she had to have WBR and soon. She had managed to beat the cancer for almost a year, but when she had to switch chemo after an allergic reaction, the cancer spread to her brain. She had only pinpoint spots, however, according to CT scan. We thought she had to have it to preserve her life. That seemed to be the emphasis anyway. Our mother rushed around and handled legal matters the week before she began WBR. She was fully ambulatory and had her full mental capacity. She was scared and didn't want to have the WBR. Turns out her fears were realized, unfortunately. In less than a week after WBR started, she could no longer write her name. She became very quiet and unable to walk without assistance. Soon after that, she had what was apparently a seizure because her dental bridge feel out. She began to curl her hands inward. Within a month of the start of WBR, she passed. The irony is that they told us if she not have the WBR, she would probably only live less than 3 months. With WBR, she did not quite make it to a month after treatment. My sisters and I decided that had we been better informed about the potential damage of WBR, we would not have encouraged our mother to undergo it. She couldn't get out of bed just a week after WBR and so her quality of life was greatly impacted. Her loss of cognitive and communicative abilities was unbearable. She was 74 years old. WBR was recommended for most at the time in 2008. Since that time, caution is now given for treatment of the elderly with WBR. The advantages do not necessarily outweigh the disadvantages. We wished she had not had WBR. I'm thinking that your husband is quite a bit younger. If so, he may be able to handle the treatment without such a dramatic impact. I wish you the best as you make that decision. Perhaps your husband can go with his gut on whether to do it or not. My mother went against her gut as everyone around her pushed her toward WBR treatment. We were told that WBR would cause extreme fatigue and require a few weeks, maybe a few months recovery. We never imagined the decline would be so rapid.

On Feb 06, 2013 12:23 AM MikeBronx526 wrote:

I'm new to this. I am 20 years old. And 3 weeks ago I lost my mother to lung cancer. Her battle was 16 months long and I'm just so damn mad and angry and sad I don't know what else to say. She was my best friend. She had a nice fight and I was with her every step of the fight. She caught phuenomia December 22 and missed christmas and died 2 weeks later. I feel so lost and confused. Have many of you lost your mom or dad to cancer ? How do you cope ? It's all I think about
My sisters and I lost our mom to lung cancer with mets. It took us a good three years to come out of the daze. Now that is has been five years, it is easier. However, every few months, strong feelings resurface. I suspect this will continue indefinitely. We accept it. It was so very hard for the first year or so. It's as if you walk around in a surreal state. You want to pick up the phone and call your loved one, but then you realize you can't. Time will help memories replace the pain. It will get easier...
My mother had lung adenocarcinoma with mets to her brain. There were pinpoint spots diffusely dispersed in her brain according to one test on her brain. Despite her own strong reservations about whole brain radiation, she conceded to WBR and radiation of her affected lung. The doctors suggested that these procedures were imperative to preserve her life.. Within a few days of the whole brain radiation, she had serious changes in her physical condition. She had been fully ambulatory but could not walk without a trembling gait afterwards. Although she had no cognitive impairment prior to whole brain radiation, she could not sign her name after less than a week! She could not communicate! My mother was a shell of her former self. Her partial dental plate came out of her mouth soon after WBR. She apparently had been having seizures. She began to display signs of a stroke victim with curling upper limbs, inability to speak or walk, and inability to respond to her environment. In addition after a CT scan follow-up on her lung, it was noted that the radiation to her lung damaged her good lung tissue. Her breathing became far more labored than it had been before radiation to her lung. She couldn't lie flat and breathe. When my mother screamed and displayed a look of extreme terror when lying flat for the whole brain radiation, the radiologist told us he couldn't treat her if she wouldn't cooperate and lie down! He ordered a sedative for her panic symptoms which was given. Almost immediately, my mother experienced periods of apnea and had to have an equivalent of Narcan or face a full code situation! As we watched our mother's condition deteriorate quickly after these radiation procedures, my sisters and I insisted on the CT scan follow-up. My mother's attending general medical physician, Dr. Earle F. Mazyck in Dothan, Alabama, finally complied. He acted like it was a bother and waste of time. In addition to the radiation-induced damage in her lungs, the CT scan revealed a pulmonary embolism. No one knows how long it had been in her lung. The radiology oncologist, Dr. Steven H. Stokes in Dothan, Alabama, said the cognitive impairment and stroke-like symptoms were caused by her disease process! Later, Dr. Steven Stokes said it was all just palliative treatment anyway. He did no tests to find out what negative impact the whole brain radiation had done to her brain. Her stroke-like symptoms were not addressed. My mother died less than a month after whole brain radiation and lung radiation were administered! Had the doctors written her off...after all she had terminal cancer anyway...and hastened her death by the use of these extremely dangerous procedures? My sisters and I believe so! If your loved one is elderly, RUN...not walk...from whole brain radiation!

On May 20, 2008 12:00 AM Mclfighter wrote:

My mother-in-law is about to have whole brain radiation (begins next week) for a metastatic brain tumor that came from esophageal cancer. She first had the brain tumor on her cerebellum in January and it was resected and completely removed. We chose not to do whole brain radiation because we were not convinced that the benefits outweighed the negatives, but 2 months after her surgery, the tumor was back and at its original size.... which is pretty much unheard of!

So, now we have to do whole brain radiation and we are nervous. Have any of you had whole brain radiation or know someone that did? What were the major side effects and complications that were experienced? Did it keep the tumor from recurring?

Thanks!!

Lia

My mother had lung adenocarcinoma with mets to her brain. There were pinpoint spots diffusely dispersed in her brain according to one test on her brain. Despite her own strong reservations about whole brain radiation, she conceded to WBR and radiation of her affected lung. The doctors suggested that these procedures were imperative to preserve her life.. Within a few days of the whole brain radiation, she had serious changes in her physical condition. She had been fully ambulatory but could not walk without a trembling gait afterwards. Although she had no cognitive impairment prior to whole brain radiation, she could not sign her name after less than a week! She could not communicate! My mother was a shell of her former self. Her partial dental plate came out of her mouth soon after WBR. She apparently had been having seizures. She began to display signs of a stroke victim with curling upper limbs, inability to speak or walk, and inability to respond to her environment. In addition after a CT scan follow-up on her lung, it was noted that the radiation to her lung damaged her good lung tissue. Her breathing became far more labored than it had been before radiation to her lung. She couldn't lie flat and breathe. When my mother screamed and displayed a look of extreme terror when lying flat for the whole brain radiation, the radiologist told us he couldn't treat her if she wouldn't cooperate and lie down! He ordered a sedative for her panic symptoms which was given. Almost immediately, my mother experienced periods of apnea and had to have an equivalent of Narcan or face a full code situation! As we watched our mother's condition deteriorate quickly after these radiation procedures, my sisters and I insisted on the CT scan follow-up. My mother's attending general medical physician, Dr. Earle F. Mazyck in Dothan, Alabama, finally complied. He acted like it was a bother and waste of time. In addition to the radiation-induced damage in her lungs, the CT scan revealed a pulmonary embolism. No one knows how long it had been in her lung. The radiology oncologist, Dr. Steven H. Stokes in Dothan, Alabama, said the cognitive impairment and stroke-like symptoms were caused by her disease process! Later, Dr. Steven Stokes said it was all just palliative treatment anyway. He did no tests to find out what negative impact the whole brain radiation had done to her brain. Her stroke-like symptoms were not addressed. My mother died less than a month after whole brain radiation and lung radiation were administered! Had the doctors written her off...after all she had terminal cancer anyway...and hastened her death by the use of these extremely dangerous procedures? My sisters and I believe so! If your loved one is elderly, RUN...not walk...from whole brain radiation!

On May 22, 2008 12:00 AM bbrenda3 wrote:

My father passed in November 2008 from brain cancer he was 68. We choose whole brain radiation and I regret it. My father lay bed ridden for 3 months unable to speak and acted like a 4 year old. The doctors tell us it is because of the radiation that he is acting this way. My father died with no signs of a tumor on his MRI but the radiation killed him. If we would have only known.

Brenda

My mother had lung adenocarcinoma with mets to her brain. There were pinpoint spots diffusely dispersed in her brain according to one test on her brain. Despite her own strong reservations about whole brain radiation, she conceded to WBR and radiation of her affected lung. The doctors suggested that these procedures were imperative to preserve her life.. Within a few days of the whole brain radiation, she had serious changes in her physical condition. She had been fully ambulatory but could not walk without a trembling gait afterwards. Although she had no cognitive impairment prior to whole brain radiation, she could not sign her name after less than a week! She could not communicate! My mother was a shell of her former self. Her partial dental plate came out of her mouth soon after WBR. She apparently had been having seizures. She began to display signs of a stroke victim with curling upper limbs, inability to speak or walk, and inability to respond to her environment. In addition after a CT scan follow-up on her lung, it was noted that the radiation to her lung damaged her good lung tissue. Her breathing became far more labored than it had been before radiation to her lung. She couldn't lie flat and breathe. When my mother screamed and displayed a look of extreme terror when lying flat for the whole brain radiation, the radiologist told us he couldn't treat her if she wouldn't cooperate and lie down! He ordered a sedative for her panic symptoms which was given. Almost immediately, my mother experienced periods of apnea and had to have an equivalent of Narcan or face a full code situation! As we watched our mother's condition deteriorate quickly after these radiation procedures, my sisters and I insisted on the CT scan follow-up. My mother's attending general medical physician, Dr. Earle F. Mazyck in Dothan, Alabama, finally complied. He acted like it was a bother and waste of time. In addition to the radiation-induced damage in her lungs, the CT scan revealed a pulmonary embolism. No one knows how long it had been in her lung. The radiology oncologist, Dr. Steven H. Stokes in Dothan, Alabama, said the cognitive impairment and stroke-like symptoms were caused by her disease process! Later, Dr. Steven Stokes said it was all just palliative treatment anyway. He did no tests to find out what negative impact the whole brain radiation had done to her brain. Her stroke-like symptoms were not addressed. My mother died less than a month after whole brain radiation and lung radiation were administered! Had the doctors written her off...after all she had terminal cancer anyway...and hastened her death by the use of these extremely dangerous procedures? My sisters and I believe so! If your loved one is elderly, RUN...not walk...from whole brain radiation!

On May 20, 2008 12:00 AM Sam38 wrote:

side effects we encountered was softening of the brain and brain swelling 1 year later which caused my spouse's death earlier this month it was so upsetting to be told after the fact about this little secret.
My mother had lung adenocarcinoma with mets to her brain. There were pinpoint spots diffusely dispersed in her brain according to one test on her brain. Despite her own strong reservations about whole brain radiation, she conceded to WBR and radiation of her affected lung. The doctors suggested that these procedures were imperative to preserve her life.. Within a few days of the whole brain radiation, she had serious changes in her physical condition. She had been fully ambulatory but could not walk without a trembling gait afterwards. Although she had no cognitive impairment prior to whole brain radiation, she could not sign her name after less than a week! She could not communicate! My mother was a shell of her former self. Her partial dental plate came out of her mouth soon after WBR. She apparently had been having seizures. She began to display signs of a stroke victim with curling upper limbs, inability to speak or walk, and inability to respond to her environment. In addition after a CT scan follow-up on her lung, it was noted that the radiation to her lung damaged her good lung tissue. Her breathing became far more labored than it had been before radiation to her lung. She couldn't lie flat and breathe. When my mother screamed and displayed a look of extreme terror when lying flat for the whole brain radiation, the radiologist told us he couldn't treat her if she wouldn't cooperate and lie down! He ordered a sedative for her panic symptoms which was given. Almost immediately, my mother experienced periods of apnea and had to have an equivalent of Narcan or face a full code situation! As we watched our mother's condition deteriorate quickly after these radiation procedures, my sisters and I insisted on the CT scan follow-up. My mother's attending general medical physician, Dr. Earle F. Mazyck in Dothan, Alabama, finally complied. He acted like it was a bother and waste of time. In addition to the radiation-induced damage in her lungs, the CT scan revealed a pulmonary embolism. No one knows how long it had been in her lung. The radiology oncologist, Dr. Steven H. Stokes in Dothan, Alabama, said the cognitive impairment and stroke-like symptoms were caused by her disease process! Later, Dr. Steven Stokes said it was all just palliative treatment anyway. He did no tests to find out what negative impact the whole brain radiation had done to her brain. Her stroke-like symptoms were not addressed. My mother died less than a month after whole brain radiation and lung radiation were administered! Had the doctors written her off...after all she had terminal cancer anyway...and hastened her death by the use of these extremely dangerous procedures? My sisters and I believe so! If your loved one is elderly, RUN...not walk...from whole brain radiation!
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Brain Cancer, Lung Cancer - Adenocarcinoma
Radiation, Support

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