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Thank You All

Brenda3.16
Posts: 211
Joined: May 2009

Hi. I would like to thank everyone of you for being an inspiration to me since March 2009. I was 42 years old and DX with Stage 4 cc mets to liver and lung. I went through a month of terror not eating, sleeping or living. I was terrified and felt hopeless. I went to Sloan-Kettering and had a very netative Dr. Luckily my local (45mins away vs 2 1/2 hours like NY)oncologists gave me some hope. Stumbling upon theese boards changed the whole focus of my life. I finally found hope. There were people who were living life with Satge 4 cancer and many who were beating it!!! This what just what I needed to see after I had read and heard all the depressing statistics. I have been visiting this board a few times a week since March. I share with my mother and sister everything about all of you. My sister has been reading the boards and recently started posting (amyb15). We talk about the members of this board like they are our friends.

I don't know why it took me so long to join in. I am quiet and a private person by nature, and I really don't like to write. I felt I needed to post now and thank all of you for changing my life and outlook on this disease.

I have a 14 year old daughter and my main concern has always been her. I worry about what would happen to her if anything happens to me.

I have had chemo since March of 2009. Folfox March-July. 5 fu July-Sept. Xeloda Sept to now. I have tolerated the cheom quite well. I have been able to work pretty much full time as teacher. I feel so fortunate. I love my job. I have remained active , exercising, working and running my 14 year old daughter around.

Surgery was mentioned at Sloan in the beginning, after chemo shrank things. I had a good resposne to folfox. Liver mets shrank a lot. Lung mets are very tiny 3mm largest. They have not changed. They did not light up on Pet Scan. I just had VATS procedure last week to make sure Lung Mets were cancer. They were. I meet with local oncologist today. We will go over results from last CT and talk about what to do next. If lung nodules were not cancer, I think surgery was an option. Now it probably is not. I may be put on a different chemo drug. I love the Xeloda. I have had no side effects from it. My life has been as normal as it can be.

I want to switch from Sloan-Ketterin to another large facility. This has been a decision that I have been agonizing over for months. I know it an amazing place, that people travel to from all over the world. People from the town I live in go here because it is realitively close(2 1/2 hours). I just have not felt comfortable here from my first visit. My local oncologists refers people to Sloan all the time and has been happy with them in the past. He has not been happy with many things that have happened in my case.

I hope that I can be a support to all of you now. I will not post as much as many of you do, because I normally don't have a lot of time. I have been off work for a week due to VATS surgery. I go back tomorrow.

My photo is my cat. My sister amyb15 has a picture of me on her posts. I tried to change the picture of my cat to another picture, but it kept bringing the cat photo back ! I haven't figured out a lot of the mechanics of the board !

Thank you all again. I can't even beging to express how much you all mean to me.

Brenda

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I see YOU, Brenda! I'm glad you decided to join in the conversation! Let us know what you need answered or discussed.

I'm glad that the board has been a help to you already, and now that we can exchange thoughts and wishes, I think you'll feel it's even more of a blessing.

*hugs*
Gail

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

First of all...you were sucessful changing the pic...I don't think the one displaying for me is a cat...lol...and I know cats as I have two!

So glad you have joined in.

I am only starting this process, but one thing I do know...you gotta like and feel comfortable with your health care team...if not, move on until you find one who suits you. Just like a pair of shoes...may fit another perfectly, but not you, so don't be afraid to change.

Wishing you the best in your search and with your treatments.

Marie

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Brenda,

First, we ARE your friends. I have many friends that I've never met IRL. I'm glad your sister is here as well - Hi Amy!

If you aren't comfortable at Sloan, either get another onc there or go somewhere else. I moved around several times until I found the right 'fit' for me. Then, my onc had to be out for a couple of months so I saw someone else in the same facility. She questioned everything my onc had done and planned to do. She tried to change my treatment plan. I didn't like her at all as my onc although she was very thorough and had read my entire chart of many inches. I could hardly wait for my onc to come back and almost left a place that I love.

Do what you need to do. Yes, this is your doctors JOB, but it's your LIFE. Big difference.

Hugs,

Kimby

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome, Brenda,

It is great to see you post. I hope you get as much out of this board as I do!

Brenda3.16
Posts: 211
Joined: May 2009

Thanks for all of the quick responses. I saw my local oncologist this morning. We went over the results of my VATS procedure, which I knew the lung nodules were cancer from the surgeon yesterday. He is going to add Avastin to the Xeloda that I am allready taking. I have not tried Avastin yet. He is saying to put the surgery on the back burner for now. He agreed that I should switch from Sloan to another big facility at this point. He is going to contact the University of Maryland or John Hopkins.

Thanks for the support about switching doctors. It is a huge decision that I have been agonizing over for months !

Brenda

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Just wanted to give you a shout out!! Sounds like you have great control over your DX and that is what I have learned here. YOU are the boss..... good luck and if I can ever lend an ear.... I have 2 :)))

Jennie

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Jennie. I found your story very inspiring. Your success with chemo was amazing. I am hoping that with the addition of my new drug, I might see some great results.

Brenda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Sometimes changing horses in mid-stream is not a good thing - but changing doctors in the middle of a cancer battle sure can be.

I did the same thing and it altered the course of my life for the better - at least at this point, I'm always open now to something else if things start to go funny.

Avastin with Xeloda is a good 1-2 punch and will strengthen the effectiveness of the medicines. FYI - keep an eye on how your heart is beating after you take the Avastin for awhile - I think I'm not typical with this, but I took it 8-months and began to develop a "skip" in my heartbeat and would find myself "catching" my heart on the upswing when you breathe in - never happened before Avastin, but after many months, the condition developed - and it continues to this day.

I've read information that Avastin can (over time) lead to congestive heart failure, but it made no mention to how much time that was - just monitor yourself and report to the onc how you're feeling.

Glad you came on board - lots of good help here - best of luck - you're doin' great!
-Craig

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Craig. My sister and I both loved your TV appearance. It is great that you got to be part of something that is cutting edge. I had the VATS procedure done last wed to do 2 biopsies. It was a lot more involved than I realized. I loved the picture of your dog with you. My cat has been hanging out on the couch with me all week.

Thanks for the information on the Avastin. My dr said the side effects are usually tolerable, so I am praying for the best.

I have loved reading you posts over the past few months. You are an excellent writer. You posts are always fun to read.

Brenda

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brenda- welcome!
I've spoken w/ your sister via PM's & so I'm glad to see you now posting!
You amaze me that you're teaching full time! That's great that you have been able to keep up with that. I do hope you are able to get enough rest, though! Your sister probably told you that I was also a teacher, but stopped teaching upon my diagnosis. I've considered going back a few times, but something always popped up & so I didn't. I had thought more recently about going back half time (job sharing), but I would worry about leaving a teaching partner high and dry if I had to take off again. Also- this may sound bad, but I'm currently getting 80% of my salary on retirement disability and so if I went back half time, my income would drop to 50% and then I'd also be working! I actually have job protection & that I still have until this June to let my district know if I'm coming back or not. We'll see about that!

I'm glad your VATS surgery went well & that you've got a plan going soon with your oncologist. I'll be interested in hearing about that.

You take care!!
Lisa

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Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hi Brenda,
Thanks for posting. I sat on the sidelines and only read for a while too. Posting - participating - is so much more rewarding and meaningful. I used to teach 3rd grade but had to start this year on medical leave. How do you continue to teach? You must some kind of super woman. At the very least you are one of my new heros. You give me hope that one day I will be able to return to teaching. For now, like Lisa, I'm stuck drawing disability and not able to teach even part time. My oncologist doesn't even want me to tutor or volunteer because of exposure to germs.
By the way - love the tie dye in the picture with your sister.
Take care.
Roger

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Gracie and Roger. It was nice to hear from both of you. When I was on Folfox I did get down a little. I did that from March till July 09. The three months in the spring that I was doing that I took off 3 days of work every other week. I would spend Wed at the doctors getting tx then Fri would return to get pump off. Sat I would be really tired and would rest. Sunday I felt fine again. I could have worked on Thur but I didn't want to walk around in the middle school with my pump on. I teach 7th grade Math. I was lucky I had a lot of sick time saved. Now that I am on Xeloda I don't have to miss anytime. I still have some Neuropathy from the Oxy but it is tolerable. My doctor told me to try L-Carnitine and it seems to help. I try to exercise ,(walk fast with one of my friends and sister) as much as I can. We usually do 2.5 miles 3 or 4 times a week while our kids are at activities. I really think that has helped me to feel better. I force myself to go even when I don't feel like it. We also have fun becuase we talk the whole time.

Roger I'm glad you like the tie dye. They are Tshirts that our middle school band wore to a competition at Hershey park last year. I went as a chaperone. My daughter is in the band. she plays the trumpet and guitar. My sister and I loved you story behind your user name of crow. We also have a lot of crows. Did you ever hear of Roger Vandergift (spelling ?) He has an amazing story of surviving Stage 4 cc . He attributes it to attitude and visualization. Teaching 3rd grade must have been rewarding. That is a great age. Both of my oncologists said use common sense about germs but working was fine. It has helped me keep my sanity. I don't have a lot of time to worry about my self. I return to work tomorrow after a week off from my VATS surgery, so I won't have as much time to post, which I will miss.

Great to hear from you both.

Brenda

Brenda

papajedi's picture
papajedi
Posts: 110
Joined: Oct 2009

Wow you can work!! That is so good, I had 10 rounds of Folfox and had a great scan Dec14, my onc took me off chemo:) We will evaluate end of Feb. You have our love, support and prayers for continued triumph!!!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Welcome to the board but I sure wish you did not have to be here. You were diagnosed about the same time my husband was, via colonoscopy, March, 09. He also has mets to liver and lungs. His treatment was a little different, besides the whole Folfox thing he received Avastin from the start. He did all 12 treatments and, like you, continued to work the whole time, including taking that fannie pack and pump to work. He has had an excellent response. He is now on what I call "chemo light", 5FU and Leucovorin every week adding the Avastin every other week. Hopefully, he continues on the path he is now on. Anyway, I talk to much so welcome again and I look forward to your future posts. Tina

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