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STAGE 4 LUNG Cancer - three cycles in...


johnny_cubert

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In late April my 58 year old mother was diagnosed with stage IV lung cancer. (non small cell)

I am at Dubuque Internal Medicine's oncology center -- my mother is receiving her fourth cycle -- we are getting a cocktail which includes Avastin and Carboplatin and Paclitaxel - and zometa and steroids.

The doctor met with us to talk about the full body bone scan done this week in comparison with the one done before treatment began. The news was not bad, but it didn't seem good.

He said that the cancer hasn't spread, that it has stabilized (not his word, I'm sure) the tumors in her lung have gotten smaller but not much else has happened with the various spots where the cancer exists. He said that it may have effected the cancer we can't see...

It's hard not to take this news negatively. We don't want miracles, but his presentation was really difficult to take. (He speaks very loudly and as if he has just drank three cups of coffee -- he always has a white ball of spit sticking to his lips as he speaks. Dry mouth????) I don't love him. I wish I was in Chicago with the doctor we met with first.

Three weeks ago we left this office feeling really good -- we were told that my mother's body was taking the chemo very well and that she would be going six cycles instead of three. That seemed like good news.

Today it seems like whatever we do it's only going to keep alive in this same condition as long as we continue treatments.... what happens when we finish these six cycles??

I know that when we finish these cycles, we shall go to Chicago for a comparison of the body scans and have a second opinion.

When stage four lung cancer involves the bones, can one live for a few years, enjoying life? Is it all worth it? Today I am very sad.

HERSTORY - of Georgia....

AUGUST 2007

felt funny in chest, doc said it was her heart, and she wasn't sick enough for any exploratory tests

JANUARY 2008

was told by doctor she had pneumonia, and treated for such

APRIL 2008 -

14th - turns 58, coughed up a little blood

(finally, a sympton to justify a test)

24th - doc told her no hope, stage iv lung cancer

26th - horrific pain in lower back, emergency room

29th - to Chicago for second opinion

told there is always hope, and statistics...

but it is terminal

MAY 2008-

1 - full body bone scan / MRI

2 - new local doctor - Dr. Herman suggests

chemo plan of Taxil, Carbo, and Avastin

plus zometa (bone strengthener, & steroid)

told cancer is on skull, but not in brain

it is on lower spine, in lungs, in blood,

and various other places.... told the tumor

on liver is to be ignored...

6 - Chicago doctors suggest radiation treatment

to lower spine, to shrink tumors, chemo later

Local Doc says, treat pain with Morphine and

to attack the body's cancer with chemo plan

7 - PORT put in, Chemo treatment started

8 - felt great, went shopping...

9 - felt lousy, in pain, not hungry, won't drink

10 - same as 9

11 - Mother's Day, came downstairs, but tired early,

stayed in bed throughout the afternoon

16 - shopped again!

19 - family flew up and visited, naps in afternoon

21 - aggrevated back, two days of horrible pain

22 - 27 WEAK

28 - 2nd Chemo treatment

JUNE

3 - lost ten pounds since chemo started

discovers popscicle do the trick

and pancakes and pasta with butter

13 - gained five pounds

18 - third round chemo

JULY

7 - full body scan

9 - fourth treatment - gained 8 pounds!

scan shows very small decrease in size of tumors in lung

not much of a change anywhere else

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(((( Johnny))))

I know the results were not as you had hoped they would be, but I have to tell you that stable with Stage 4 lung cancer is a GOOD thing. There has been no spread, and that is what we shoot for. We always want to receive the news that there has been shrinkage but sometimes that takes a while. Hopefully, with the next set of scans, there will be.

I have Stage 4 LC and now going into my 22nd month since dx. I really do feel good altho I do have a few other problems going on. I do what I want to do (albeit a bit slower) and am really enjoying life. I have bone mets and to be honest, the Zometa I was on did such a good job with them that I am no longer on it. So to answer your questions, yes, bone mets are doable. Have you asked why she is not on something like Zometa??? That is a bone strengthener that they give along with chemo.

I am sorry you do not like your present onc and maybe that means that you should be asking for a second opinion. Liking and Trusting your doc is a huge thing. Never be afraid to ask for a second opinion.

Good luck and please keep us posted. Your mom is very lucky to have you by her side through all this.

Hugs - Patti B.

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Johhny

First of all around here stable is GOOD news! I know that you hope for the best possible scenario - but stable is really good !!

Second - I agree with Patti about the doctor - the first thought I had when I read your post was - "gotta change docs" - I think liking your doctor - feeling comfortable with him/her makes a huge difference. I didn't like my first doctor at all - no specific reason really, well, I did feel he was stuck in a rut treatment wise, - but my doctor now is approachable, knowledgeable, positive and ready to fight for as much time as he can get me.

Third - I have stage IV with mets to the spine. I was also in great pain but that was 19 months ago - I am sitting here now with my bathing suit on ready to jump in the pool for a swim, then maybe a walk on the beach after which I think I will do some weeding. Next week I plan a day in NYC with friends. So to answer your question - yes you can live for a few years and enjoy life -

I know this is all very overwhelming for you - I know you will be sad, and scared and angry -

but have hope, have faith - and fight - your mom is so blessed to have you -

peace

janet :D:D

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hey Johnny. Thanks for the update. I agree with others...unfortunately stable is good news..and there are many stable success stories here so hopefully others will post.

get rid of that doc with the dry mouth! yuck! I like your sense of humour....important through all of this....need a doc with one as well. Important to like your doctor.

Hopefully now you can tell your mom and others that this is actually good news...and take a deep breath, and keep moving on.

take good care

Sandra

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Johnny, Tell your mom I'm older than she and I was "stable" after two rounds of Avastin/Carboplatin/Taxol but in remission after six. Hang in there. I was really disappointed too and said "stable" wasn't good enough for me. I believe that attitude can be a real plus and I'm living proof.

Judy on the Rancocas River

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Hi Johnny,

I wanted to respond to your last question of "Is it all worth it?". I can tell you from experience that it most certainly is. I learned, from the people on this board, that everyday is precious. I wondered the same thing about my sister. I hated to see her in pain and I wondered if it was worth it for her. I got a pretty good talking to from the great folks on this board. They reminded me that ONE more birthday, ONE more Halloween, ONE more Thanksgiving, One more Christmas, ONE more grandbaby being born, ONE more memory was all worth it in the end.

As long as your Mom wants to continue treatments, be there for her and enjoy every minute with her...as we all should EVERYDAY with our loved ones.

I will pray that your Mom gets wonderful results with her next scans.

Love to you,

Bobby

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Johnny:

Only your mother can say whether it was all worth it, but most of us do say that, no matter how difficult adjusting to our "new normal" may be.

As to "stable," I agree with all others that stable is good (consider the alternative).

Hang in there, Johnny. It's not over by a long shot!

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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Johnny:

Only your mother can say whether it was all worth it, but most of us do say that, no matter how difficult adjusting to our "new normal" may be.

As to "stable," I agree with all others that stable is good (consider the alternative).

Hang in there, Johnny. It's not over by a long shot!

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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