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Experience of others

Guest mch566

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Guest mch566

Hi to all,

I was diagnosed in April NSCLC IV (9cm x 7cm left lung)and found some support here in the initial devastation. Now I have sold my home in CA, moved to FL. I'm at a hotel, but will be in a home after the 18th.

Scheduled for Lee Moffett Cancer Center Fri AM. I had radiation treatment to relieve pain in spine and left clavicle from bone mets and sadly, brain lesions are also evident. So far no degradation in breathing, no cough etc. In fact pulmonary function test was normal when adjusted for weight (i'm over).

I am taking a mild steroid to reduce risk of brain swelling and I am also on MScontin for pain relief. The radiation with the pain relief has me feeling normal.

My big question before I see and start any chemo therapy...how can I possibly be dying of cancer, when I feel so good - I'm sleeping, I have an occaisional headache, and an occaisional mild ache in my arm or leg. The first oncologist told me 1 year - because I'm young and reasonably healthy...I'm 55, and overweight, but otherwise no health problems. As long as we ignore the elephant in the room.

Anyway, thankfully, my family has been with me, sisters disrupting their lives to accommodate my needs, everyone is doing all they can.

I guess I'm writing to hear of others experience. I mean a sore arm started this ordeal. I'm not in denial...the tumor is real and very large. Just curious.

Regards to all.


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Hi Mary, that is why you and I are Stage IV. Unfortunately with lung cancer symptoms do not appear until it is often too late. I also felt fine, just a slight tickle in the throat. It is a real sneaky disease and quite often you feel worse with the chemo than you did with out it.


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Hi, Mary, I was thinking about you...........glad to see you posting.

Hope you are settled soon and I remember you had insurance concerns..........

We are keeping you in prayer........

We have no answers for your questions......we are all on the same bumpy road.........we are NOT dying we are living every day...........

Stay in touch

Pat and Brian

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Hi Mary.

I know what jimben is talking about. I didn't have any real symptoms either. I felt fine when I was dx with stage IIIb disease. And it is also true that the treatments knocked me on my backside. But, I am still around to gripe about it! :P

I am glad that you have family around to help over the bumps. Any other questions that you can think of just ask away. That is what we're here for.

Let us know what your plans are, okay?

Cindi o'h

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Dear Mary, My husband is also living with stage IV nsclc. It has been 6 months and except for the first few weeks he has never missed a day of work unless he couldn't schedule his chemo around his days off. We live in a new world and many of the statistics that you read (and doctors quote) were compiled in an earlier day when there were very few options and much more guess work. Don't despair and don't think you have only a year to live! My husband had 13 mets to the brain alone and all were taken out with Gamma Knife which I know they offer at the Moffit Center. I'm glad you feel so well! Embrace your health and become a believer.


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Hi, Mary. My wife's problem also started with her arm. First, it was loss of function in the left hand, and then pain in the hand and arm. The main tumor was on her upper spine. She originally had 5 bone mets, and clear (!) lungs at diagnosis. She was given 9 months and is now more than 2 1/2 years out. She has had several bouts with the beast and has beat it back each time so far. Right now, she is doing fine. Best to you. Don

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I too, have had just about the same experiences you have had. I am also 55. Mine was a slight cough.

I had to ask for an xray, to find out what the problem was. I felt great !!!

A little tired, that we blamed on fuid retention. So we increased the water pills.

I too was told that I was dying, I had 3 months to 1 year to live. I was devistated, I felt GREAT. How could that be?

My daughter found this sight and I found the encouragement I needed to fight the BEAST!

I do chemo every Tuesday. So far I've been dealing pretty well. A little tired, my blood count dropped, so we took a week off the chemo. Everyone has different reaction to the chemo's. They have so many different meds to deal with the side effects of chemo.

I also do radiation every day for 38 days.

I had stereotatic radiosurgery on a brain met on May 24th.

I hate this disease! Most of us have the same systems - none.

Hang in there - you have support here. Sounds like you have support there at home too. That is so important.

There is NO WAY we are dying of this disease - WE are LIVING with the disease.

Read some of the stories of the survivors!!! They are wonderfull. They give ME hope. They give me the will to fight.

Keep in touch with us - we really do care.


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