Anyone out there living with stage 4 lung cancer?

Posted by nursed2075 @nursed2075, Mar 10, 2020

Is anyone living with stg4 lung cancer? How are they doing?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Are people in this group able to recommend doctors for stage 4 adenocarcinoma? Doctoring at Mayo Rochester. Continued uneasy feelings about the doc we've been assigned. Thanks.

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Good morning. I’ve had two that I really like at the Mayo in Rochester. One I have I is Dr. Pranitha Prodduturvar. The first time I had her she had read me charts (she couldn’t have known everything going on with me and up to date what was going on with me) explained and showed me charts what I had and what was left. I have stage 4 turmoil adenocarcinoma cancer. Tumor had spread from right lung to liver, stomach and left long. Was told I had 3 months to maybe 2 years. That was 2 years ago March 15, 2019. Only bad times was after chemo would get sick. Quit chemo after 6 months and on keytruda every 21 days since. Also had osteoporosis before cancer and treatments weaken bones which causes bones to be fragile. Fractured 4 ribs since different times. My fault as was told that I shouldn’t lift over 5 lbs which I did.
Feel good 95% of the time. My comment would be to ask supervisor that you just don’t feel comfortable with your Dr and see if you can’t get different one.

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@carlies

Are people in this group able to recommend doctors for stage 4 adenocarcinoma? Doctoring at Mayo Rochester. Continued uneasy feelings about the doc we've been assigned. Thanks.

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Carlies, it is important that you feel confident in the care you are getting. I agree with @richcolleen that you may wish to talk someone about your experience. I suggest contacting the Office of Patient Experience:

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

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@crawdad

Hello,my wife has stage 4 lung cancer. She was having head aches and dizzy spells when she fell and broke her tibia they did a ct scan and found a brain tumer and had that removed ,after lab work they discovered it came from her lung . It was small cell lung cancer since her diagnoses she has had 15 radiation treatments to her brain and so far 12 rounds of chemo. As of 7/23/2021 she has been in the hospital with pneumonia they or giving her platelets. Also her o2 levels will fall any where from 80 to 50 and i dont know how i can help her.We are raising 4 grand kids she is only 53 and I am 57 I would be greatfull for any hlp or support. Thank you

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Hi Crawdad, How is your wife doing? How are you doing? You may be too busy to answer those questions right now. Just know that I'm thinking of you and your family.

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Yes I have stage4 and I’m a survivor almost 4 years.

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Good Day All! I am rather new in my journey. Diagnosed with Stage 4 adenocarcinona nsclc Aug 3rd. T1,n1, m1 to pleura. My Onc started me on Alitalia, Carboplatin and Keytruda. I had my 2nd infusion yesterday. So far I have had little side affects other than weakness for the first few days after treatment and some constipaion which I handled with a chug of Miralax. I got some good news yesterday if there is any in this diagnosis. I got genomic testing results back and have the EGFR mutation. I’m going to finish two more infusions of the above chemo combination, get a chest ct scan to document progress and go from chemo to a targeted therapy pill which he stated earlier would be Tagresso if the EGFR came back positive. Although it means I will go on a different rollercoaster ride of not knowing what lies ahead, I consider this good news. Time is time and I’m grateful for it. My Onc told me the most common side effects are diarrhea and dry skin/rashes. The chemo has benefited me on a therapeutic level with the pleura involved I’ve so far had 4 thoracentis procedures to relieve the fluid build up. He feels the chemo will dry that up in the next few weeks it will reduce and stop. My actual tumor is rather small at .43 of an inch. It’s the darn pleura that’s got me. 😉

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@jannad

Good Day All! I am rather new in my journey. Diagnosed with Stage 4 adenocarcinona nsclc Aug 3rd. T1,n1, m1 to pleura. My Onc started me on Alitalia, Carboplatin and Keytruda. I had my 2nd infusion yesterday. So far I have had little side affects other than weakness for the first few days after treatment and some constipaion which I handled with a chug of Miralax. I got some good news yesterday if there is any in this diagnosis. I got genomic testing results back and have the EGFR mutation. I’m going to finish two more infusions of the above chemo combination, get a chest ct scan to document progress and go from chemo to a targeted therapy pill which he stated earlier would be Tagresso if the EGFR came back positive. Although it means I will go on a different rollercoaster ride of not knowing what lies ahead, I consider this good news. Time is time and I’m grateful for it. My Onc told me the most common side effects are diarrhea and dry skin/rashes. The chemo has benefited me on a therapeutic level with the pleura involved I’ve so far had 4 thoracentis procedures to relieve the fluid build up. He feels the chemo will dry that up in the next few weeks it will reduce and stop. My actual tumor is rather small at .43 of an inch. It’s the darn pleura that’s got me. 😉

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@jannad, Good morning!, stage IV lung cancer is a cruel diagnosis, having a targetable gene mutation does help. Obviously each case is unique, but many respond well to the targeted therapies. I’m hoping that you do too!, only time will tell. It sounds like you are in good hands, take care, get rid of that pluera and you’ll start feeling better!

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@lls8000

@jannad, Good morning!, stage IV lung cancer is a cruel diagnosis, having a targetable gene mutation does help. Obviously each case is unique, but many respond well to the targeted therapies. I’m hoping that you do too!, only time will tell. It sounds like you are in good hands, take care, get rid of that pluera and you’ll start feeling better!

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Thank you, I received news during my infusion on Monday that I have the EGRF mutation and after two more infusions and a chest ct scan to see where I am I will be changing to a pill most likely Tagrisso for more targeted therapy. I take this as good news and will prepare myself for a new roller coaster ride. I’ve not had much side effects from the infusion treatments but on Friday will have my 5th thoracentesis and my Onc feels I will probably need at least one more after that. I am doing well other than that and am back to getting some exercise on my elliptical to keep my lungs strong. 😂

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My sister was recently diagnosed with Stage 4 Lung Cancer. Doing chemo & radiation. Dr. blatantly told her today she had 1 year to live as if he was treating a cold! I refuse to believe that. She is fighting for her life! What kind of Dr. says such things with no compassion and this newest diagnosis????!!! We're not taking this sitting down! Any direction, comments or guidance are welcome...please!

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@mblnyc

My sister was recently diagnosed with Stage 4 Lung Cancer. Doing chemo & radiation. Dr. blatantly told her today she had 1 year to live as if he was treating a cold! I refuse to believe that. She is fighting for her life! What kind of Dr. says such things with no compassion and this newest diagnosis????!!! We're not taking this sitting down! Any direction, comments or guidance are welcome...please!

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The early days of diagnosis are so difficult. Sorry that your family had that experience with the oncologist.
There are so many types of lung cancer, many treatment options, and just as many differences in outcomes.
I would make sure that her team is having a biomarker test run. The result can help to drive treatment plans. None of us come with an expiration date stamped on our foreheads!, take care, hugs, Lisa

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