Triple Negative Mets
My mother was diagnosed with TN BC in Dec. 05. She had a lumpectomy, chemo and radiation. No lymph nodes involved. She was just diagnosed again in November 08 with BC mets to the lungs, liver and bones. She just turned 60 in October of 08. She has just received her 3rd teatment 3 weeks on 1 week off which includes Taxotere, Zometa, and Avastin. Taxotere weekly, Avastin bi-weekly and Zometa once a month. Have any of you been diagnosed with the same type of mets and did this cocktail work for you and if so for how long. My mother will be getting a chest X-Ray this Friday I guess to see if the tumors in the lungs have shrunk or if they are still growing. I have so many questions but hate to ask them in front of my mom when we are talking to her Onc. As far as the cancer goes, is it worse to have it in the liver or lungs? I have seen others talk about the lungs being treatable but what about the liver? Since the cancer has spread to both liver and lungs at same time does this mean that her prognosis is really bad? Also, I am 36 and my sister will be 41, have any of you heard that triple negs have a higher chance of carrying the BRAC mutation gene? I am going in for a complete physical tomorrow and then will have a Mammogram scheduled soon after. I am considering getting tested for the gene. Have any of you been tested?
Comments
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Hi Survive,
Given your mother age I think that she most likely does not have BRAC mutation. I had my test done when diagnosed at age 46, and they thought I was a bit too old to have that mutation. They only performed a test since I was an Eastern European Jew.
I am sorry to hear about your mother, I hope you will hear from other people soon who were able to get into NED and stayed there for some time.
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dear survive,
your mom is so fortunate to have such a loving, proactive daughter as her advocate!
getting the answers to these questions is really important, and i'd say you should definitely get the answers from the oncologist, not rely on this board only. perhaps you can explain to the onc beforehand that you don't want to ask the questions in front of your mom, but you would like a phone consultation. or you can hand the onc the questions (or even fax them) and he/she can call you back with the answers. does your mom not want to hear these questions and answers? maybe she is like my mom, who has lung cancer, who does not want to know much - but my mom is 80. but some patients really do want to know everything. i know i do.
please also ask the onc the question about TN and the genetic testing. it might be a good time for your mom to have that testing done now so that you have more information that will help you.
it's great that you are having a physical and mammogram! early detection saved my life.
you and your family are in my thoughts. you're a wonderful daughter.
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It's not that triple negatives are more likely to be BRCA positive, but that 80% of BRCA positives are triple negative.
Given that your mother does have breast cancer, I would see if they'd give you the test - it's very expensive, so your health insurance might have to be prodded.
I got the test also because of being eastern european jew even though there was no one in my family with any history of breast cancer. If you can't get it, then you might see if your mom can be tested. If she's negative, you aren't home free, but you get some relief. If she's positive, there's no way they could deny you the test.
Good luck!
susan
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I agree. I would have your mom tested. I was tested for the same reason as Susan..eastern european Jew. I was tested at age 50 and I don't believe it's ever too late. They did tell me that since I was negative for BRACA my daughter has the same risk as any other women without the gene.
If I may ask..which chemo treatment did your mom get originally? Just wondering. I was diagnosed in Sept 2005. How did she know she had mets? Symptoms? I am not doing any scans except for breast MRI (tomorrow follow up for spot in other breast). Just wondered...
I wish you all the best. Wonderful that she has such a supportive daughter who is also her advocate.
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I also agree, the test provides useful information, and I don't think there is such a thing as "too late."
Ravdeb - keep us posted on your follow-up, I had my MRI on Thurs, and am hoping to hear good news today
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ddlatt
Thank you for your respons and advice. My mother will be asking her Onc. to allow me along with my sister and father to have access to all of her records and for him to discuss her medical information with us. I am not sure that she wants to know everything there is to know yet. I am not sure if I want to know everything yet myslef but eventually I will want to know.
I did mention the testing to her Onc. at the last visit we had together and I don't think he understood what I was asking. When I brought it up, he told me that it would not matter if she had the BRAC gene because the treatment would still be the same. I don't think he understood that I was concerned about myself and my sister. I didn't want to alarm my mom so I probably did not ask the question as well as I should have.
Thank You again for your kindness!
Love your picture by the way!
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guitargrl
You said that you were tested for the BRAC gene? Do you mind me asking if you were positive and if so what you chose to do?
I am just so thankful for this site and being able post my questions/concers and getting great responses from all of you. Thank You!!!!!!!!!!!
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ravdeb
Thank you for your response to my questions.
I believe that she was on Taxol the first time around and that was it. 4 doses along with the anti-nausea medicine and then 6 weeks of radiation.
All of her bloodwork came back normal and just by chance when she went in for her yearly with her regular Dr., her Dr. suggested that they do a chest X-ray even though she was not scheduled for her next one for 2 more months. The X-ray showed suspicious spots on her lung and so the cancer battel began again. She then had a lung biopsy which confirmed the spots were Mets to the lung. MRI and PET scan were done which the MRI showed her brain to be clear but the PET showed that the cancer had spread to 2 lymph nodes in her neck, both sides of her lungs (small tumors), her liver, her femur bone and hip bone. We did ask the Dr. how long she had if she chose not to get treatment (not that it was an option, she is a fighter) and her said 6 months. However, we never did ask how long she had if she did get treatments. I do understand that she will die from her cancer but am hoping that she will live for many years with ongoing treatment (maintence plan as they call it).
My parents have been married for 43 years and I can honestly say that I had always hoped they would die together as I don't know how one will survive without the other. My Dad has always said my Mom was the love of his life and has always treated her that way. He has never said anything hurtful to her or called her any bad names EVER!!!! It is just going to be another diffucult thing to deal with when the time comes. Hopefully not for a very long time!
Thank you again for your support and advice!
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Survive - I was negative. If I had been positive I would have had my ovaries removed. But I'm also your mom's age, not yours, so I had no expectations of reproducing any time soon.
Go for the tests and then talk to your doctors. You can't decide anything till you know your situation. Breast cancer can also run in a family that isn't BRCA positive.
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Either way, I am going to ask the Dr. if I can just have a dbl mas and have the ovaries removed. I have 3 girls and have no plans for any more children. Do you think I can just get the surgery even if I don't have BC or the BRAC gene?
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Survive
I read you said in other posts that your Mom had ER+ tumor at first and did she get PET scans 3 yrs ago? And now the mets is ER -, so it could not have been related to initial dx; maybe the ER- mets were there but too small to be detected? Did the original dx say if there was any vascular invasion? Sometimes if the nodes are negative, cells could also invade the vascular. And the chemo usually for node negative is AC not toxol. So you said your Mom had toxol, that is strange because toxol is given to work with node positive, especially considering your mom age.
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I double checked and it appears that she had Taxotere not Toxol and she has always been Triple Negative. Initially she was told that she had a small margin of positive type but mostly negative if that makes sense. With my mothers first diagnosis, we were not very proactive about finding out exactly what type etc. as we just figured breast cancer was breast cancer. We were not too concerned that it would come back to be honest. The Dr's all felt very confident that the cancer had not spread and the lumpectomy went well with clear margins.
This time around I have been researching as much info as I can.
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Taxotere is used usually for mets. So I don't really understand why the doc did not give AC? So they did not do x ray, pet scan, and bone scan at the time of first dx then?
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That is correct. What does AC stand for? They did not do a Pet Scan with her first diagnosis or a bone scan. I believe a chest X-Ray was done and that is it.
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I cannot spell it but I know most people get AC for node negative and AC Toxol for node positive. And usually they must do a PET scan, chest x ray, and bone scan as well as ultrasound for all internal organs. That's what they did to me, and all was clear. How big was your mom's tumor?
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Survive -
As the others have mentioned, you are truly a terrific daughter.
My friend has mets to her bones, spine and liver (she did have lung mets, but apparently and fortunately, the lesions seem to be gone). She is currently on Zometa and Abraxane? - she goes weekly for three weeks and then has one week off.
Concerning the BRCA test - I did have the test done and fortunately was negative for the mutation; however, my insurance company still paid for me to get a prophylactic mastectomy of my "good" breast.
FYI - A/C - adriamycin/cytoxan.
Best wishes to you, your mother and family.
Raye
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I would like to correct something...
I was scheduled for dose dense AC followed by dose dense Taxol. I started my chemo in Oct 2005. With triple negative they found that even with node negative (which I had) Taxol worked to prevent recurrence in many cases. I worked hard to get this chemo.
I ended up doing only 3 of the 4 AC treatments (got very sick) and then 12 weekly Taxol treatments followed by rads.
Some doctors prefer not to use "A" but often will use the C with the Taxol or Taxotere, I think. I've not heard of JUST Taxol but..it's tough and good on triple negs, so they say.
Interesting they caught something with a regular x-ray. I thought regular x-rays didn't show cancer spots. I get a chest x-ray once a year.
cmb35..how long does it take for you to get results? praying for good stuff for you!
thanks for the good wishes. I'm nervous!
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newalex and ravdeb
My mom's bc was described as less than a nickel size. It seems that everyone has some different story about what chemo they got and what it was mixed with. Makes a person wonder if they are getting the best cocktail or not. Trial and error I guess but don't like it.
Apparently tumors can show up on chest X-Rays as they could see some kind of spots that did not show on the X-Ray she had 4 months prior.
I don't understand why a PET scan was not ordered once the initial cancer was found along with a MRI too. If I knew then what I know now I would have been asking her Onc these questions about the tests, chemo, how many TN patients he has etc. I think every Doctor has a different protocal it seems.
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I got Taxotere & Cytoxin for triple negative, no mets. Ravdeb you are right - everyone seems to get a slightly different treatment. I've long suspected that breast cancer treatment is as much an art as a science.
That being said - good luck on your tests. We need more good news here - and given that you are at that magical 3 year mark for triple negatives ...
susan
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I had dose dense AC/T (4 rounds of adriamycin/cytoxin, followed by 4 rounds of taxol) and I had triple neg, node pos, grade 3 tumor (small 1.1cm)
I got the results, both scans were negative - woo hoo! I'm not done with the brain stuff, next step is the neurologist, but I'll take it for now. (You know how you learn to read between the lines? I think the net net is that although the brain MRI was negative for "gross abnormalities", the symptoms of facial numbness are troubling, and the concern is that the MRI just didn't pick it up. So "close monitoring and follow-up", which I think means another brain MRI in 6 months.)
Survive - I agree, it's definitely somewhere between art and science!
ravdeb - thinking about you...
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Survive,
I'm surprised her doctor is using Taxotere for recurrence of TN. Most ladies are using Abraxene or Ixempra for mets. I do know Abraxene does work for some. Was this choice of chemo do to other health concerns?
Girls you are right about it being a art (practicing medicine) after three clinic and 8 different chemos...I hate to say it all in what the new fad is going around. They seem to jump on what ever is new, in hopes it might work better than the old stuff. My doctor away's says "with TN's we just don't know enough".
Flalady
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My mom had her first bc a 2 years ago. We chose not to do chemo because the stat isn't convincing, and my mom didn't want it due to the SE. In July 08 she felt a small lump that's soft below her collar bone. She thought it's "inflammation" (the universal Chinese perception of lump) since it's not sore and it's not hard lump. By the time she told and showed me the lump in October it's about egg size. It's dx to be her first bc in mid October. Had CT, PET, Muga(?) scan and ready for AC/C before Thanksgiving. The onc retired a week before the treatment and was referred to another onc who's young and so-called "star doctor" in the department (It's Kaiser). He switched the AC to Taxotere. According to him, he said there's some new research showing TC work better on my mom's cancer (my shame, just confirmed from the onc it's triple neg... 2.5 yrs after the first dx). Be hopeful, Survive.
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You know, we never did ask about why he chose Taxotere. I guess that is a good question to ask. I had heard good things about Avastin so that was my main question to the Onc. to see if he would be using the Avastin. My mom is on cholesterol, thyroid, depression meds but that is all as far as I know. She is in relatively good health besides being overweight.
What other chemo's do you guys know that have been used for TN? I guess I would like to get a list of them all and see what he says about each one of them and why he chose Taxotere over them.
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sfbaer
So, Taxotere is what the new Onc prescribed? That does make me feel a little better. How does a person know if the treatment their Onc is giving is the right one? I guess I really need to ask more questions. As I stated earlier, my mom will be getting a chest X-Ray on Friday and we will know if the chemo is working or not. I will make a list of questions that you all have helped me put together and have my sister ask the Onc. I will not be attending this Dr. appointment as my sister has come from Seattle to help my mom and dad out and help keep my mom positive. I do not live in the same town as my parents and although it is under 100 miles each way, I feel that my sister would like to be more involved so I am handing it over to her while she is here. I guess I am just afraid that the right questions won't get asked. So, like I said, I will be asking her to ask the questions and get the answers.
Thank You !
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I would like to thank all of you who continue to respond to my posts. I can honestly say it makes me feel so much better to read what you all write. I also print out some of the posts for my mom to read. It gives her hope and as she said she just needs to be reminded that she has many years to live and that there is a teatment out there for her.
I think there is so much good information on this board.
I wish you all to live life to the fullest and keep up the fight!
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Survive - I am also on thyroid & anti-depressants (on both for years) - from what I can tell is neither is affected by the chemo. But your mom should ask her doctor if she needs to wait the four hours after taking the thyroid pills that seem to be required for so many other thyroid drug interactions.
It might just mean scheduling the chemo for the afternoon instead of the morning.
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Survive,
Yes the new onc prescribed Taxotere instead of AC that the former onc planned to go along with Cytoxan. This new oncologist is from Harvard Med followed with 6 years in UCSF. As far as I know Taxotere has one advantage over AC, particularly to my mom, is that it's not cardiotoxic. My mom has hypertension and has been on medication. Perhaps the onc was saving the AC to use along with Avastin if Taxotere doesn't work. That's just my guess. I'll see him again next Thurs, day before her second round. Tell your mom she's not alone though it doesn't make a difference of how surreal it is. We, as human beings, can't really choose how the disease tortures us, then let's choose to be positive. It doesn't have to end up in the worst scenario, nor nobody in this world can put a deadline on one's life. Let's chin up and fight the bastard!
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guitargrl
Thanks for the info on the thyroid meds. I will make sure she asks about the medication and when to take it.
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sfbaer
You really have made me feel better. I do remember that the onc did mention that some of the other chemo's were hard on a person's heart. I am thinking that maybe since my mother is overweight that he may not have wanted to add any additional stress to her heart and maybe wanted to wait and use the AC if the taxotere does not work.
I can't thank you enough for the encouraging words.
On another note, has anyone heard of a person who has not been diagnosed with BC to just have a dbl mast? I am really considering it if my doc will allow it.
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Survive,
No need to thank me. I'm almost on the exact same page as you. My mom is 62 and first dx in 06. I wasn't paying much attention on her first bc although I was with her during the whole radiation therapy time. I do feel regretful, but it's too late. I can just hope the TC combo works out perfectly. Her lump is actually smaller according to her own feeling. I see Avastin is a relatively promising bet, but the side effects seem to be to risky. My mom's hair start falling off today and she called me crying like a baby. She was ready, so I think she's just scared when she saw chunks of hair fall off in reality.
I was just through my down time yesterday. My rational side is optimistic, but the other side is worrying and desperate. I bet you are feeling the same. You are not alone~
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