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Looking for Stories for those who had lung cancer spread to brain and spine.


daisy48

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 As I'm not going thru this but my mother is  and I'm looking for some info on this  as mom symptoms are coughing during eating, losing voice, losing ability to write and having some balance issues as my mom just found out about this  almost two week ago  so I was wondering if  there  were any success stories as she is going thru chemo and went thru radiation. Also , since their is family history of cancer and I plan to see a genetic counselor to ask  him about finding out possibly  screen myself  due to genetic/hereditary  of cancer so what questions should I  ask when I do  talk  to that counselor.

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Daisy,

Welcome here.

In summary, yes there are success stories for folks who have lung cancer with tumors spread to the brain and spine. This is Stage IV disease and most have the brain and spine metastasis treated with "precision radiation" (types: SBRD, IGRT, IMRT or similar) while the lung tumor is treated with fractional general radiation. Here is information about radiation for treating lung cancer. Then chemotherapy is administered, either conventional or targeted therapy or immunotherapy depending on the type of lung cancer and the presence of tumor mutations or immunotherapy indicators. These tumor mutations and immunotherapy indicators are discovered during a laboratory test of biopsy tissue generally performed after the histology diagnosis is made. Here is information about biomarker testing. This is important and opens the door to using new targeted therapies or immunotherapy as treatments. Please ensure your mom has had this important testing.

I know, that is a lot to take in but even today, the newly diagnosed often do not receive biomarker testing. These new treatment techniques depend on biomarker testing results so the most important thing you can do for your mother at this point is ask her doctors if her tumor material was sent for laboratory biomarker testing.

I'm not an expert in genetic heritage and lung cancer association. Here is a paper written no this topic for your information.

As for success stories, I was diagnosed in February 2004 at Stage IIIB, with non small cell squamous cell lung cancer, that progressed to Stage IV after surgery. I've had every form of treatment except immunotherapy. If I can live, so can your mother.

Stay the course.

Tom

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Daisy, loss of my voice is what led to my Stage IIIB EGFR+ NSCLC In October 2019. After 2 mis-diagnoses, it was determined that my left vocal cord was permanently paralyzed by the tumor in my left lung. I had a bulk injection of Teflon into my vocal cord in November 2019 and I have some sort of voice now. 

Tom has given you great advice. I can tell you that there are Stage IV survivors out there doing well thanks to targeted therapies for their particular genetic mutation, combined with precision radiation. I personally have taken a targeted therapy since March 2020 and today am NED (No Evidence of Disease). My genetic mutation was acquired and not inherited (or what they call germline). 

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  • 1 month later...

They are only doing chemotherapy for my mom lung cancer  and the radiation they did was on the brain which was the gamma knife. She  had two chemos , 1 gamma knife on her brain and a linear accelerator on her spine.  Mom's been thinking  her time is going to be up that she's already setting up like death plans like 'cremations' obituaries' and speaking to  the funeral director along with the pastor of church.    Also, on Tues, my mom rebroke her spine again another compression fracture due to her first compression fracture was how she found out she had cancer in may when her spine showed spots  so they did the full ct scan on May 7  and that was when she found out  she was with cancer then all of sudden she's just been making  even saying I want memorial brochures  this size   . Also, my during her second spine fracture found out that she now has fluid around her heart  and  the  dr won't be treating the fluid around her heart as she has had fluid around her heart and then she set up  to get her cremation appointment set up  and today she was having it  all set up even paid for so did any of you get fluid around your heart with  the lung , brain and spine cancer ?

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Daisy,

Did any of us have fluid around the heart, lung and or brain or spine cancer? A short answer to all is yes. I had fluid around my lung on several occasions and it was drained by port installed by a surgeon. Sometimes this fluid is removed with a long needle. It is relatively common with lung cancer and the condition is called a pleural effusion. There are many causes for effusions, which in the case of a pleural effusion, is irritation between the outer wall of the lung and the interior chest wall. Lung cancer typically causes this.

I've never had fluid around the heart but I know lung cancer survivors who've had this. Again there can be many causes for this symptom and often the fluid is drained surgically or with a needle.

Again, many of us have had lung cancer metastasis to the brain and or spine. The most common treatment for these tumors is radiation like the type your mother had.

You mom had stage IV lung cancer but you haven't told us the type of lung cancer. It might be Small Cell or Non Small Cell. The non small cell variety is further broken down to three subtypes: squamous cell, large cell and adenocarcinoma. Do you know which of these types your mother has?

Stay the course.

Tom

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Welcome. First off, there arw so many treatment options today. Based on your description of your mom's treatment so far it's pretty vanilla. That's a good thing. One, it has a good chance of working and second there is so many more treatments available.

As far as your moms feelings. IMO she is doing the wise thing. Upon my diagnosis one of my first tasks was to organize my affairs in preperation for the worst. It made me feel better when I was done. That was 16 months ago.

Peace

Tom

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When I was so sick from treatments, my husband and my sister looked for a nursing home for me and also spoke with a hospice provider, just in case. Our wills and trust, power of attorney and advance directive have been in place since we moved to California. So we now feel like we're well prepared when the time comes for either one of us. Prepaying for arrangements is a fine idea too. Perhaps doing all this makes your mother feel that she has control over her life, and I can understand that. 

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4 hours ago, Judy M2 said:

When I was so sick from treatments, my husband and my sister looked for a nursing home for me and also spoke with a hospice provider, just in case. Our wills and trust, power of attorney and advance directive have been in place since we moved to California. So we now feel like we're well prepared when the time comes for either one of us. Prepaying for arrangements is a fine idea too. Perhaps doing all this makes your mother feel that she has control over her life, and I can understand that. 

Best part? She dies have control now.

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