I have BAC

I have had BAC for 3 yrs. Mine is non surgical and I have been on chemo off and on for all that time. Thank you Linda for the courage and effort you are making for all of us. Im in. Wendy

Do you take chemo? I was told that chemo would not work. I want to try chemo, does it work for you? Have you tried Tarceva? they told me that I do not qualify for chemo. Can I take chemo? Can you help me I am confused....

 

melissa

 

On 6/6/2009 melgrigg09 wrote:

Do you take chemo? I was told that chemo would not work. I want to try chemo, does it work for you? Have you tried Tarceva? they told me that I do not qualify for chemo. Can I take chemo? Can you help me I am confused....

 

melissa

Hi Melissa, Chemo usually does work I was told as well, but I had a good response to it. I have been on it off and on for 3 yrs. The fact is they do not know much about what we have. I tried Tarceva first with no real response. Then I was on Carboplatin, Taxol and Avastin which my Dr. has great faith in. I am off now because of side effects. but I am doing OK at the moment. Did you have surgery?  By the time I was diagnosed I had it throughout my lungs and mine is the wispy infiltrate type rather than a tumor.  What is your dr. telling you as far as treatment? How are you feeling? God's blessings to you, Wendy

Where are you from? I have the tumor type. What hospitals have you been talking too? I have gone to Sloan-Kettering, I was diagnosed at St.Mary's, and I am going to Fox Chase on the 10. Are you working? I am worried about going back to work, because just trying to keep up with hospital appts, catscans, and Dr appt, I dont know how I am going to schedule work in there. I also have 3 children I am trying to keep up with as well. I have also been so exahausted that I literally have to take a nap during the day,I have not started any treatments yet. As for as treatments go Dr. Alley from St.Mary's states that the only treatment he recomends is the Tarciva. Dr. Oetting, from Sloan - Kettering, states that it may be operable, and then he brought up the Tarciva as well. I go back to see his surgen on the 29 of this month. I dont know what Fox Chase will say. So I will let you know. So what is the type you have? It sounds scarier than mine. Did you smoke? I have never smoked, I am only 30. And know I am living on a timeline, until treatment gets started. Oh well I guess I could go on forever,but write me back and let me know, and talk about yourself alittle or a lot.

MAY GOD BE WITH YOU THRU YOUR JOURNEY!!:)

MELISSA 

On 6/6/2009 mermaidme wrote:

I have had BAC for 3 yrs. Mine is non surgical and I have been on chemo off and on for all that time. Thank you Linda for the courage and effort you are making for all of us. Im in. Wendy

Wendy, What a surprise to read this!! You are welcome. You are as much a part of this push to gather BAC people to study. Now we have three people in our group to be studied! The goal is to have 50 people by the end of this year. Is anyone with BAC cancer interested in hearing more? This is exciting stuff for the future of all BAC cancer people and possible future generations. Please pass this message on to any BAC people who want to participate. Thank you. Moon and Stars or Linda

This message is for Melissa, Hi Melissa I am moon and stars and Linda. Wendy and I are friends who live in California. I did respond to your message a couple days ago. I know Sloan-Kettering is a great hospital. I had the tumor type and had it removed by the VATS procedure. It is quite amazing. It's great you are getting several opinions. I did that too. You were one of the people who responded with wanting to do something to help. That's great, but first you should take care of your situation. Feel free to contact me if you want more information on how to help or if you want to talk. --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--Take care of yourself.

 

On 6/7/2009 melgrigg09 wrote:

Where are you from? I have the tumor type. What hospitals have you been talking too? I have gone to Sloan-Kettering, I was diagnosed at St.Mary's, and I am going to Fox Chase on the 10. Are you working? I am worried about going back to work, because just trying to keep up with hospital appts, catscans, and Dr appt, I dont know how I am going to schedule work in there. I also have 3 children I am trying to keep up with as well. I have also been so exahausted that I literally have to take a nap during the day,I have not started any treatments yet. As for as treatments go Dr. Alley from St.Mary's states that the only treatment he recomends is the Tarciva. Dr. Oetting, from Sloan - Kettering, states that it may be operable, and then he brought up the Tarciva as well. I go back to see his surgen on the 29 of this month. I dont know what Fox Chase will say. So I will let you know. So what is the type you have? It sounds scarier than mine. Did you smoke? I have never smoked, I am only 30. And know I am living on a timeline, until treatment gets started. Oh well I guess I could go on forever,but write me back and let me know, and talk about yourself alittle or a lot.

MAY GOD BE WITH YOU THRU YOUR JOURNEY!!:)

MELISSA 

My sister was just diagnosed with Stage IV BAC.  We are waiting for an appointment with a doctor at the Hospital of the Univ. of PA.  We are very uptight about what an oncologist is going to say for treatment.  Any real savy aggressive doctors that will give us hope?

 

 

 

We are waiting for an appointment with an oncologist at the Hosp. of the Univ. of PA.  My sister has Stage IV bac.  Anyone offer any help with a doctor in the Philadelphia area that is very aggressive in his thinking on treating this type of cancer?

 

Kathy

 

On 6/7/2009 melgrigg09 wrote:

Where are you from? I have the tumor type. What hospitals have you been talking too? I have gone to Sloan-Kettering, I was diagnosed at St.Mary's, and I am going to Fox Chase on the 10. Are you working? I am worried about going back to work, because just trying to keep up with hospital appts, catscans, and Dr appt, I dont know how I am going to schedule work in there. I also have 3 children I am trying to keep up with as well. I have also been so exahausted that I literally have to take a nap during the day,I have not started any treatments yet. As for as treatments go Dr. Alley from St.Mary's states that the only treatment he recomends is the Tarciva. Dr. Oetting, from Sloan - Kettering, states that it may be operable, and then he brought up the Tarciva as well. I go back to see his surgen on the 29 of this month. I dont know what Fox Chase will say. So I will let you know. So what is the type you have? It sounds scarier than mine. Did you smoke? I have never smoked, I am only 30. And know I am living on a timeline, until treatment gets started. Oh well I guess I could go on forever,but write me back and let me know, and talk about yourself alittle or a lot.

MAY GOD BE WITH YOU THRU YOUR JOURNEY!!:)

MELISSA 

Hi Melissa,

I'm so sorry that you are going through this too.  I have never smoked, have been athletic my whole life, maintained my weight, vegetarian for 30 yrs, and 10 months ago was diagnosed with stage IV BAC in both lungs at age 46.  May I suggest that you go on disability, your dr. can put you on it and it will provide some $ to live on and you won't have to work anymore.  It sounds like you have an awful lot going on and are very tired and need rest.  Listen to your body, I do not push myself anymore, I feel I can't afford to do that if I'm going to live.  I went on disability as soon as I saw a pulmonologist, I didn't even know I has lung cancer at that point but I knew I was short of breath and tired. I have not gone back to work and have stayed on disability since.

 I have been in a clinical trial for Tarceva and Avastin with terrific results.  In the first 6 weekd of treatment the cancer decreased dramatically and since has remained stable (no increase, no decrease), but stable is good!  Surgery was not an option for me because it was too advanced when found. 

 If I can provide any further info I'd be more than happy to help. 

Warmest Regards,

Lisa 

 

On 6/9/2009 moon and stars wrote:

 

On 6/6/2009 mermaidme wrote:

I have had BAC for 3 yrs. Mine is non surgical and I have been on chemo off and on for all that time. Thank you Linda for the courage and effort you are making for all of us. Im in. Wendy

 

Wendy, What a surprise to read this!! You are welcome. You are as much a part of this push to gather BAC people to study. Now we have three people in our group to be studied! The goal is to have 50 people by the end of this year. Is anyone with BAC cancer interested in hearing more? This is exciting stuff for the future of all BAC cancer people and possible future generations. Please pass this message on to any BAC people who want to participate. Thank you. Moon and Stars or Linda

Can you provide more information?  I have stage IV BAC but would like to know what this study is.  Thanks!

Lisa