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Update --now stage IV

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Hello Family! IIIB NSCLC--now stage IV, I was NED for about 6 months and doing good, then the three brain mets came. The Surgeon team removed one 1" tumor, gamma-knifed one and are waiting till about january-ish for for a another MRI and suggest the 3rd to grow larger, then it can be addressed.

Still NED on rest of body acccording to a PET last month! Kind of worried about the Mets to the brain though. Still have a 6" scar/scab on back of head from the surgery 7 weeks ago.

Any thoughts?

Brother Dave

z's picture
z
Posts: 1261
Joined: May 2009

Hello Dave, I am sorry you are stage IV, but the fact that you have been able to treat the mets is a good sign and I hope that you will get that last one treated and be done with the cancer. There is a person on Inspire named G who is stage IV, and had brain mets and has now shown ned for 12 years after being treated for the brain mets. I hope that you will visit Inspire and find him. It just shows me that these mets can be addressed and you can have a good outcome. His user ID stage4survivor. I wish you the best. Lori

Here is part of his journal which addresses the brain mets.

11/2000: large brain met regrew, had GammaKnife on all 3 brain mets

I refused full court press for WBR
No supplements, no diet, no nothing since 11/2000

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Thanx Z!.....I will look at Inspire. Getting a bit worried these days, but should be ok !! Stage III was one thing, but now IV ? Crazy!

Thanx
Dave

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Take it one stage at a time. :)

I know its serious, but we always tried to find the levity.

In all seriousness, the other quote that I like as it pertains to you is...

"Worrying does not take away tommorrow's troubles, but it does take away today's happiness.

Do look at Inspire, and keep posting.

Ben

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

keep u all posted

Dave

z's picture
z
Posts: 1261
Joined: May 2009

Have a great vacation, and I am so glad everything is clear. I am only sending postive thoughts for your mri. Lori

grannylove
Posts: 183
Joined: Apr 2011

Have a great and relaxing time on vac Dave! Much deserved. We have your back and will do all the worrying for you so nothing for you to do, but have a good time! The ocean has great healing properties and toes in the warm sand is like icing on a cake. Glad to hear the lung and lymphs are clear.....now all you need is the same for the brain! Positive vibes coming your way for a good MRI! Cheryl

kado4
Posts: 80
Joined: Jul 2011

Hello Dave...I just wanted to say, have a great vacation in Florida.How great for you to be in florida this time of year...cold and dreary here in ohio...anyway...enjoy yourself,enjoy life..it is meant to be lived!!....Will keep positive thoughts and prayers for you.

Sincerely,Cathy (kado)

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Three weeks in Florida is just what the doctor ordered :) It will do your spirit wonders to get down there in the sun and warm temps and will help you relax and forget about your current problems.

Will keep you in my prayers for your scan on the 13th.

Life is good so get out there and enjoy it!!
Glenna

medi_2's picture
medi_2
Posts: 507
Joined: Aug 2009

Bring a sweater or two...
Cheers!
Medi

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Dave, how did they find them? Did you have symptoms? PET or do they do a regular brain MRI on you?

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Will find out about brain MRI on Tuesday Jan 17th, then Pet/Ct of whole body again late Jan.
I guess I am on a two-month or so scan cycle these days.

I found out about the mets dues to headaches, especially in the morning, and nausea/vomitting at the end, and "light" fatigue. So after about 3 weeks of headaches and a real bad day, and then the nausea, I went in the emergency room and the MRI showed the 3 tumors.
After surgery and gamma knife, they did a full body pet/ct, which was clear of visual cancer.

So this is why I am going to walk the beach and frolic in the sun, because we never know how long we have!!

I will write on Wed (because I will spend night at Motor City Casino Tuesday!!) and let all know about the brain.

Thanx all again.
Dave

z's picture
z
Posts: 1261
Joined: May 2009

Sending all positive vibes your way. I hope you win at the Casino, that sounds like fun.

I wish you well. Lori

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

Have a great trip.

cathy

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Yeah, I agree........go have a blast. I hope you can find comfort and peace while you are there. The same ole stuff will be here when you get back. Highest thoughts going out to you!!!!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Have a wonderful time at the casino!!

Thinking positive thoughts that all will be well on the latest MRI.

Stay strong,
Glenna

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Good Morning All!

Well....this week I found out I have a new 2cm tumor on left side of cerebrum this time, Tumor Board is concerned the cancer is very active-it grew to this size in 3 months. I will undergo Gamma Knife next week as well as a full body Pet/Ct---hope cancer is not back and elsewhere because the gamma knife should take care of the brain quite well.

The Board is talking maybe a clinical trial on a chemo pill that will cross the blood/brain barrier and keep future Mets at bay. We finally pulled out of my Onc that she thinks two years of life left for me is about right, that will get me 3.5 years from DX.

At 48 yr old, I feel I will be on the far end of any experience/statistics, and go farther!!!

WBR does looks like a very last alternative as far as I am concerned, too many issues with that.

Keep you posted next week. Life is good !!

Your friend---_Dave

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Good Morning All!

Well....this week I found out I have a new 2cm tumor on left side of cerebrum this time, Tumor Board is concerned the cancer is very active-it grew to this size in 3 months. I will undergo Gamma Knife next week as well as a full body Pet/Ct---hope cancer is not back and elsewhere because the gamma knife should take care of the brain quite well.

The Board is talking maybe a clinical trial on a chemo pill that will cross the blood/brain barrier and keep future Mets at bay. We finally pulled out of my Onc that she thinks two years of life left for me is about right, that will get me 3.5 years from DX.

At 48 yr old, I feel I will be on the far end of any experience/statistics, and go farther!!!

WBR does looks like a very last alternative as far as I am concerned, too many issues with that.

Keep you posted next week. Life is good !!

Your friend---_Dave

iola_s_mom_is_so_brave's picture
iola_s_mom_is_s...
Posts: 16
Joined: Jan 2012

So good to see you here! haha...keep positive thoughts, Dave.
I admire you and will tell 'life is good' to my mom :-D
All best wishes.

-iola

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