Answers Desperately Needed

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Answers Desperately Needed

by PMCave on Sun Apr 21, 2013 03:50 PM

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I love how the medical profession just can't sometimes be honest with the patient or his or her family. My father was diagnosed with small cell lung cancer with metastatic brain disease. My dad has 11 tumors in his brain, the largest lesion has a large amount of vasogenic edema associated and is located at the right parietal lob, measures 4.5 AP x 3.5 cm transverse. Another similar large lesion at the medial aspect of the right cerebellar hemisphere measuring 1.7  cm AP x 1 cm transverse. A large ring enhancing lesion at the left temporal lobe measures 2.8 cm AP x 2.3 cm transverse. Similar lesion at the right thalamus measures 0.8 cm AP x 0.6 cm transverse.  It is felt to be metastatic disease to the brain, neck, mediastinum and hila bilaterally, adrenal glands, possibly spleen, kidneys, retroperitoneal, and pelvic nodal chains.  I just want to have a time frame and not have the run around from his group of doctors. He had his first cycle of chemo, and his blood work is low, and now I will be receiving his new results on the MRIs he has taken this week another on his brain, and now on his lumber. To top every else off he just had an echo and it stated mild left ventricular enlargement and concentric hypertrophy with preserved systolic function, and also minimal mitral valve regurgitation. Please let me know once again perhaps what his time frame can be? Thank you all!

RE: Answers Desperately Needed

by thebyrdsfriend on Mon Apr 22, 2013 12:04 PM

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     My father died one week short of a year from diagnosis of small cell lung cancer.  That was 1989, and we were told then that the chemo could not penetrate the brain membrane or the spinal cord.  Now, that was a long time ago, and many many progresses have been made.  Having said that ~ I'm not sure why you think the medical profession can't or won't be honest with the patient of his family.  There is absolutely no reason a doctor would not be honest with the patient or family.  You've gone into a lot of description of lesions, tumors, whatever, but that doesn't help a layman like me.  I am the one now who has battle non small cell lung cancer, stage 3a.  There are only 4 stages to lung cancer, and I imagine your dad is a stage 4.  

     So, what do you want the medical profession to tell you?  They have no idea how long your dad has.  We, as the average layman don't know that answer either.  There is just no way you are going to get anyone to tell you how long your dad has.  When the time comes, you will be told something like, a couple of weeks to a month or two.  That is as general usually as they get.  When they tell you it's time to call hospice, that is another clue that it won't be long.

     Instead of worrying how much time your dad has, maybe just concentrate on him.  There is no worse a feeling than to have a loved one pass, while you are researching, looking for a cure, or looking for a timeline, and not spending that time loving your loved one.  There comes a time when there are no answers, there is no cure, and there is only love left to give.  Small cell cancer is not a good diagnosis as you know, and it sounds like your dad either found this really late, or has been battling for quite some time, and it's just not responding to treatment.  But, lung cancer has no symptoms until late stages.  

     I am so sorry you have to go through this.  And, I understand wanting to know everything, but there just isn't an answer for everything.  It is just a sad situation you are in, and I hope you get to just relax, sit with your dad, and ask him all the questions you want answers to ( how did you learn to work on cars again dad?) and I hope he tells you wonderful stories.  Just give him love, love love, that is what this whole journey on earth is for ~ love.

Byrd

RE: Answers Desperately Needed

by PMCave on Sun May 05, 2013 01:58 AM

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   Thank you, and I decided to cherish every moment with my dad. I have been by his side every day since being diagnosed. One day, he told me to make some friends or to visit my neighbor so I responded that " I have only one best friend and that it is you." I already know what to expect and I was in denial, so for the rest of his time I will just be by his side.  I am sorry that you are battling lung cancer and my prayers are with you. 

RE: Answers Desperately Needed

by Pawpawbilly on Sat May 11, 2013 03:41 AM

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On Apr 21, 2013 3:50 PM PMCave wrote:

I love how the medical profession just can't sometimes be honest with the patient or his or her family. My father was diagnosed with small cell lung cancer with metastatic brain disease. My dad has 11 tumors in his brain, the largest lesion has a large amount of vasogenic edema associated and is located at the right parietal lob, measures 4.5 AP x 3.5 cm transverse. Another similar large lesion at the medial aspect of the right cerebellar hemisphere measuring 1.7  cm AP x 1 cm transverse. A large ring enhancing lesion at the left temporal lobe measures 2.8 cm AP x 2.3 cm transverse. Similar lesion at the right thalamus measures 0.8 cm AP x 0.6 cm transverse.  It is felt to be metastatic disease to the brain, neck, mediastinum and hila bilaterally, adrenal glands, possibly spleen, kidneys, retroperitoneal, and pelvic nodal chains.  I just want to have a time frame and not have the run around from his group of doctors. He had his first cycle of chemo, and his blood work is low, and now I will be receiving his new results on the MRIs he has taken this week another on his brain, and now on his lumber. To top every else off he just had an echo and it stated mild left ventricular enlargement and concentric hypertrophy with preserved systolic function, and also minimal mitral valve regurgitation. Please let me know once again perhaps what his time frame can be? Thank you all!

My husband was diagnosed one year ago on April 21,2013 with stage 4 metastatic lung cancer lesions in the brain, scapula, T7in spine, femor bone. Of course it was non operable. He is 56 years old now and never had been sick ever before this came on he just stared having headaches one weekend. If he had not had headaches he maybe would have lived maybe 6 more weeks we were told.. We started radiation on brain 14 treatments. Along with this we started chemo every 3 weeks. The drug he was taking was Alimta and every other treatment zometa for the bone was added to the Alimta. He started falling and dropping but not passing out. We took a trip to cancer treatment centers of Ameerica in Chicago and was told he was having small seizures and they put him on Keppra and this stopped them. We were told he was on the right track were we lived so we continued our treatment at home. Every three months we dis MRI on brain and the lesion have shrunk in the brain. We did pet scan last week and was told that his cancer is what they call in a stable mode. Our dr told us that Alimta was a trial drug that was started 7 years ago. People that it works for it works well and my question was is there people from 7years ago still living and the answer was YES. We are now going to continue every 4 weeks instead of every 3weeks to give him that extra week of feeling better. Nobody can say how long any one has its just getting that fight going on inside of us. Lot of prayer and just living one day at a time. But I'm here to say you can still Live with cancer life's not quit as easy but it's sill worth living

RE: Answers Desperately Needed

by thebyrdsfriend on Sat May 11, 2013 10:19 PM

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I was on Alimta and Cisplatin together in 2010.  The cisplatin is terrible, made me sicker than a dog.  The Alimta my oncologist called a "good chemo".  They are finding it is excellent as a maintenance chemo, and it doesn't make your hair fall out, or get you sick, but it does make you sleepy.  I didn't have cancer anywhere but my lung though, so my balance and whatnot was ok.  

I am just shocked I'm still alive to tell you the truth.  I was so afraid after I was diagnosed, because of my dad, and thought I wouldn't be here another year.  Well, so far I am a survivor (3 years in July), and I cherish every day!  I think I've turned into a kinder person, and I think I don't sweat the small stuff anymore.  I also seem to have an inner peace, something that just moves me to be less worried, less frantic, or less likely to let what others think affect me.

I am so glad to here your husband is doing so well with the Alimta.  I know not many were on it when I started.  I knew it was new.  AND, since being diagnosed, you wouldn't believe all the new treatments and drugs that have come out.  The statistics are from data compiled 10-15 years ago, we are the new stats!  And, from the sounds of your husband and me, we're doing pretty danged good.

Byrd

RE: Answers Desperately Needed

by Pawpawbilly on Sat May 11, 2013 11:21 PM

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On May 11, 2013 10:19 PM thebyrdsfriend wrote:

I was on Alimta and Cisplatin together in 2010.  The cisplatin is terrible, made me sicker than a dog.  The Alimta my oncologist called a "good chemo".  They are finding it is excellent as a maintenance chemo, and it doesn't make your hair fall out, or get you sick, but it does make you sleepy.  I didn't have cancer anywhere but my lung though, so my balance and whatnot was ok.  

I am just shocked I'm still alive to tell you the truth.  I was so afraid after I was diagnosed, because of my dad, and thought I wouldn't be here another year.  Well, so far I am a survivor (3 years in July), and I cherish every day!  I think I've turned into a kinder person, and I think I don't sweat the small stuff anymore.  I also seem to have an inner peace, something that just moves me to be less worried, less frantic, or less likely to let what others think affect me.

I am so glad to here your husband is doing so well with the Alimta.  I know not many were on it when I started.  I knew it was new.  AND, since being diagnosed, you wouldn't believe all the new treatments and drugs that have come out.  The statistics are from data compiled 10-15 years ago, we are the new stats!  And, from the sounds of your husband and me, we're doing pretty danged good.

Byrd

I am so glad to hear that you are doing good. Like you when he was diagnosed he thought it was going to be a quick life sentence . We know we are blessed and enjoying family and other things so much in life. He has never gotten sick on Alimta and the only time now I notice he is so tired is when they every other treatment add the zometa. Also when we went to cancer center we were also told there are hundreds of other drugs out there to be tried. He is kind of thinking about maybe returning to work the only thing is is still really doesn't drive except within our community very seldom. Also he works for a nuclear facility and would have to gone through clearance to return to this type of job. But I have to say sometimes he is a little forgetful and says things I would have never thought to come out of his mouth. The other day was so good when we talked to the oncologist after the pet scan because now he is just not waiting to die. We had not done pet scan for 9 months because he hated to do it. But finally the doctor said we really need to compare scans glad he agreed to do it. Our radiation oncologist doesn't give him a choice he schedules it every 3 months. Do you still do maintenance because we will do for life. Also both my parents died of cancer my dad had prostate and then into bone , he lived 10 years he was such a fighter. My Mom had lung cancer and she was so far advanced the same doctor my dad had said if it was his Mom he would not even start treatment. She lived only 6 weeks. This has been since 2003 and 2006 the treatment is so much advanced now.
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