Any Triple Negative People?

heidijez · September 2010

nanny5663 said:
Triple Negative
I was really encouraged by your strength. I am 60 years old. I had a right radical mastectomy in 2006 that was diagnosed as triple negative. It was confined to a 2cm tumor and not in any lympnodes. Underwent chemo for 6 months. Other than hair loss and weakness no real problems. For four years I have been doing great then one day I have a chest cold and xrays show a very small growth. On Sept 1st I had a thorocotomy to remove part of my lungs lower right lobe. Tumor very small and no sign of any cancer in the area around it and it is triple negative. Friends and family just keep saying oh you will be fine look how easy chemo was before. It's not the chemo that scares me so but where will it show up the next time and will it be treatable. My surgery has been really painful and I will not be able to start chemo until Oct. I feel like a lost cause and don't know how to go on. Any prayers or words of encouragement you may have would be great.
Disappointed in Tennessee

don't you just love how people tell you how easy chemo was?!?!
so sorry for your new tumor - i think that is one of the scariest things about this cancer circus - not knowing where it will show up again. it's always in the back of your mind, not something you can just delete.

and i find it very interesting that people can so glibly say to you that your chemo was so easy before sot this will be a piece of cake. i think i did too good a job of trying to show a brave face to the outside world that no one realizes how horrible it was in my private little corner of the world!! like they say - walk a mile in my shoes and then we will talk!

don't give up! you can get through this! remember we are all here for you! sending you lots of hugs and prayers!!

momx4fightinit · September 2010

Triple negative and on Avastin
Just wanted to say hey and that I am a 48 year old triple negative survivor who started with stage IIa, no lymph node involvement in June 2006. I had a double mastectomy, then 4 rounds of Adriamycin/Taxol and 4 rounds of taxol. I was never really told that TNBC was "worse".....I went to my every 3 month check ups and at my 1 year check up had a CT scan. I really didn't even have "scanxiety." I thought I was DONE!! Well it spread to my right lung. After changing to a new more aggressive oncologist, I did carboplatin, taxol and Avastin(CTA). I was so thankful Avastin was released Feb 08 just in time for me to take it. It took from April till June 08 to confirm that it was indeed TNBC in my lung +CT scan/-PET....had to have biopsy....Long story short is to offer hope. After 4 rounds of CTA, they couldn't really see the tumor area any more. I did have them remove the "tumor bed." I am so thankful I did, there was still tnbc cells in there. So at this point I was dancing with NED as they say...No Evidence of Disease. We followed up with 4 more CTA rounds which ended in February 2009. I have been on avastin alone ever since and am still dancing with NED. I read through most of the posts but not sure if I saw where anyone had posted the TNBC site. http://www.tnbcfoundation.org/
It is a wealth of information. There are so many of us on that site and the YSC (young survivors coalition) site that have been doing well on Avastin for 2-3 years even. If you were diagnosed before the age of 45, this is a great source of info and support that helps us deal with issues that affect younger/premenopausal issues.....http://www.youngsurvival.org/

Finally I don't know if many of you are aware that the FDA is voting this Friday, 9/17 on whether to keep Avastin for stage 4 breast cancer patients. Because I am triple neg and NED, there are no other drugs I am eligible to take. Since we cannot take antihormonals, it is chemo or avastin and if you are NED, chemo is not indicated. If they take it away, I will have nothing. Just sit back and wait for the cancer to return and then go on chemo again. Not looking forward to this option.

A friend of mine (online) who's wife has tnbc and I started a petition to let the FDA hear from those of us who have bcancer or know someone who has bcancer who may need this drug. We have over 6000 signatures and the petition will be presented probably tues/wed this week. As much as we would like to think all this doesn't affect our children, I know it does. My 19 year old son made a youtube video to explain the AVASTIN issue.

http://www.youtube.com/watch?v=PkSZ__SvxGQ

If you feel led to try and save this drug, please consider signing our petition and passing on to your friends/family thru email, facebook, twitter, etc. This drug does seem to work really well for the TNBC population. Here is a link to another TNBC sister of mine. http://www.tampabay.com/news/health/medicine/article1118371.ece

Last but not least the petition site is: http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/

Sorry if this is too much information but don't want to be "too little, too late." I think we and our oncologist need to be making our health care decisons....Thanks again. Christi

Snowkitty · September 2010

momx4fightinit said:
Triple negative and on Avastin
Just wanted to say hey and that I am a 48 year old triple negative survivor who started with stage IIa, no lymph node involvement in June 2006. I had a double mastectomy, then 4 rounds of Adriamycin/Taxol and 4 rounds of taxol. I was never really told that TNBC was "worse".....I went to my every 3 month check ups and at my 1 year check up had a CT scan. I really didn't even have "scanxiety." I thought I was DONE!! Well it spread to my right lung. After changing to a new more aggressive oncologist, I did carboplatin, taxol and Avastin(CTA). I was so thankful Avastin was released Feb 08 just in time for me to take it. It took from April till June 08 to confirm that it was indeed TNBC in my lung +CT scan/-PET....had to have biopsy....Long story short is to offer hope. After 4 rounds of CTA, they couldn't really see the tumor area any more. I did have them remove the "tumor bed." I am so thankful I did, there was still tnbc cells in there. So at this point I was dancing with NED as they say...No Evidence of Disease. We followed up with 4 more CTA rounds which ended in February 2009. I have been on avastin alone ever since and am still dancing with NED. I read through most of the posts but not sure if I saw where anyone had posted the TNBC site. http://www.tnbcfoundation.org/
It is a wealth of information. There are so many of us on that site and the YSC (young survivors coalition) site that have been doing well on Avastin for 2-3 years even. If you were diagnosed before the age of 45, this is a great source of info and support that helps us deal with issues that affect younger/premenopausal issues.....http://www.youngsurvival.org/

Finally I don't know if many of you are aware that the FDA is voting this Friday, 9/17 on whether to keep Avastin for stage 4 breast cancer patients. Because I am triple neg and NED, there are no other drugs I am eligible to take. Since we cannot take antihormonals, it is chemo or avastin and if you are NED, chemo is not indicated. If they take it away, I will have nothing. Just sit back and wait for the cancer to return and then go on chemo again. Not looking forward to this option.

A friend of mine (online) who's wife has tnbc and I started a petition to let the FDA hear from those of us who have bcancer or know someone who has bcancer who may need this drug. We have over 6000 signatures and the petition will be presented probably tues/wed this week. As much as we would like to think all this doesn't affect our children, I know it does. My 19 year old son made a youtube video to explain the AVASTIN issue. http://www.youtube.com/watch?v=PkSZ__SvxGQ

If you feel led to try and save this drug, please consider signing our petition and passing on to your friends/family thru email, facebook, twitter, etc. This drug does seem to work really well for the TNBC population. Here is a link to another TNBC sister of mine. http://www.tampabay.com/news/health/medicine/article1118371.ece

Last but not least the petition site is: http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/

Sorry if this is too much information but don't want to be "too little, too late." I think we and our oncologist need to be making our health care decisons....Thanks again. Christi

Christi, the original post
Christi, the original post here is from April. This might not get the attention it deserves.

Why don't you make a new post with this important info. I signed #6079.

Your son did a beautiful job on the video.

Cindy

linpsu · September 2010

momx4fightinit said:
Triple negative and on Avastin
Just wanted to say hey and that I am a 48 year old triple negative survivor who started with stage IIa, no lymph node involvement in June 2006. I had a double mastectomy, then 4 rounds of Adriamycin/Taxol and 4 rounds of taxol. I was never really told that TNBC was "worse".....I went to my every 3 month check ups and at my 1 year check up had a CT scan. I really didn't even have "scanxiety." I thought I was DONE!! Well it spread to my right lung. After changing to a new more aggressive oncologist, I did carboplatin, taxol and Avastin(CTA). I was so thankful Avastin was released Feb 08 just in time for me to take it. It took from April till June 08 to confirm that it was indeed TNBC in my lung +CT scan/-PET....had to have biopsy....Long story short is to offer hope. After 4 rounds of CTA, they couldn't really see the tumor area any more. I did have them remove the "tumor bed." I am so thankful I did, there was still tnbc cells in there. So at this point I was dancing with NED as they say...No Evidence of Disease. We followed up with 4 more CTA rounds which ended in February 2009. I have been on avastin alone ever since and am still dancing with NED. I read through most of the posts but not sure if I saw where anyone had posted the TNBC site. http://www.tnbcfoundation.org/
It is a wealth of information. There are so many of us on that site and the YSC (young survivors coalition) site that have been doing well on Avastin for 2-3 years even. If you were diagnosed before the age of 45, this is a great source of info and support that helps us deal with issues that affect younger/premenopausal issues.....http://www.youngsurvival.org/

Finally I don't know if many of you are aware that the FDA is voting this Friday, 9/17 on whether to keep Avastin for stage 4 breast cancer patients. Because I am triple neg and NED, there are no other drugs I am eligible to take. Since we cannot take antihormonals, it is chemo or avastin and if you are NED, chemo is not indicated. If they take it away, I will have nothing. Just sit back and wait for the cancer to return and then go on chemo again. Not looking forward to this option.

A friend of mine (online) who's wife has tnbc and I started a petition to let the FDA hear from those of us who have bcancer or know someone who has bcancer who may need this drug. We have over 6000 signatures and the petition will be presented probably tues/wed this week. As much as we would like to think all this doesn't affect our children, I know it does. My 19 year old son made a youtube video to explain the AVASTIN issue. http://www.youtube.com/watch?v=PkSZ__SvxGQ

If you feel led to try and save this drug, please consider signing our petition and passing on to your friends/family thru email, facebook, twitter, etc. This drug does seem to work really well for the TNBC population. Here is a link to another TNBC sister of mine. http://www.tampabay.com/news/health/medicine/article1118371.ece

Last but not least the petition site is: http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/

Sorry if this is too much information but don't want to be "too little, too late." I think we and our oncologist need to be making our health care decisons....Thanks again. Christi

Video
The video made by your son was wonderful! I have tears in my eyes. I too have TNBC, stage 3C, and I want whatever arsenal of drugs is available when I need it.

chienchi · October 2010

The Curious Case of TNBC
I had TN 5 years ago right after I turned 40. I got a mammogram in Feb 2005 and it was clear. Two months later while I was out at my son's succor practice I felt burns on my face. At first I thought I had sun burns but then lupus-like rash appeared on my face and the base of my nails was red, swollen and crusted. I went to see my dermatologist with no conclusive results. Then one day I thought I had a bad cold because I was so tired with flu-like symptoms and then I felt the lump under my arm (not my breast).

I couldn't believe when the dr told me I had breast cancer because I was not overweight, and I thought only White women and old folks are more likely to have it (I'm Chinese and I immigrated to US 20 years ago). My oncologist was wonderful and I had the neoadjuvant chemotherapy consisting of carboplatin and cocetaxel first, then a mastectomy, follow by radiation. I have to say the scariest and hardest time during my cancer journey was when I was on steroid and it totally messed up my cognitive capacity: my mind was like a fast-speed computer that was never off but I couldn't function at all. Once my son asked me to make a PB & J for him and I stood there for a good 5 minutes and couldn't decide what to do next. I developed schizophrenia and thought my in-laws and my husband were in conspiracy to cut me off from the outside world. After the treatment I was very depressed for 8 months. How I wish someone would alert me about all these side effects at the time!

I was recruited as the case study for Harvard Medical School's dermatology department and I still have blizzard autoimmune symptoms on my face (lupus-like rash). If anyone out there shares the similar experience, please let me know. I was told to stay away from the sun, even the fluorescent lights. The dr. gave me Hydroxychloroquine (usually used for treating malaria) and told me it might not show any impact until 6 months or longer. Four months later, I still don't see any change and while I was in Taiwan for a family visit, my sister-in-law referred me to see a Chinese herbalist. I didn't really have high hope at first but after a week, the rashes on my face were mostly gone. Now the rashes are like an indicator of my health - whenever I felt stressed, the rashes flare up. Right now I have mammogram twice a year but I had PET scan and blood test done when I felt the needs - just like the other wrote, mammograms can't detect the cancer sells in your body and you have to be your own advocate to claim what's right for you. I hope this is somewhat helpful and I would very much like to connect with others...

chienchi · October 2010

John_32 said:
hi everyone
Thanks Diane for the good wishes. To Ken, Joe, Greg, it seems we are all members of a club we never wanted to be in. I can certainly understand some of what Ken is going through with his girlfriend's family as well. As I mentioned above, my wife seemed to have gone into some sort steroid psychosis as a result of the dexamethasone she was taking to reduce her severe brain swelling after she was diagnosed with brain metastasis. Her behavior became extremely aggressive and hostile, to the point of throwing me out of the apartment. I stayed in a hotel after that and for weeks afterward it became almost impossible to contact her as her family pretty much circled the wagons around her and were trying to cut me out of her life. Her parents are elderly immigrants from Asia, and don't seem particularly knowledgeable about the medical aspects of this diagnosis, so they took her bizarre outbursts against me as somehow rational and provoked, when in fact she was clearly out of her mind on powerful mind-altering steroids. Unfortunately, because I lost my job in this awful recession, I did not have the funds to continue staying in a hotel and my wife is now living at her parents' house-where I am persons non grata because her parents believed her crazed emotional state was the result of how I was treating her instead of the result of the numerous lesions in her brain and the dangerously high dosage of steroids that she was on. Cancer is a nightmare to begin with, but once it spreads to the brain and starts altering someone's personality, it's like you are losing the person that you love before you have actually lost them.

mood swing & personality change
Sorry to hear about you and your wife. I'll be happy to share with you my experience if you would like to talk further (see my post and you'll see). Chien-Chi

Any Triple Negative People?

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