Calling all TNs
Comments
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Good morning ladies,
Boy, this is a busy thread. I am having a hard time keeping up with it. I wanted to share with you girls that yesterday I had my first fill. I am excited! PS said every two weeks . Yay! I am a little bit sore , but it is manageable. I posted new picture on forum. I will see my BC onc today. It has been over a month that I last saw her. I hope everything is ok.
Have a great day ladies.
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Well its finally official, got my HER2/neu result and its negative so I am TN.
I met with my oncologist for the first time today, she has no preference as to chemo first or surgery first. So -I'm opting for surgery first. So now I have to truck my tired ass back to the surgeon.. onc ordered a CT scan, bone scan and some blood work as baselines. Surgeon is out this week in conferences - Onc talked to surgeon's nurse so hoping they get going on scheduling so we can do the surgery ASAP. Feels like this has been going on forever.
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Hi Donna,
I participated in the trial at Stanford you asked about in your post. I was diagnosed on May 5, 2010 and my local oncologist suggested the study. Unfortunately, my tumor went from 2 cm to 6.5 while undergoing the treatments. Dr. Telli had me stop the trial and I went immediately to surgery. No node involvement...so who knows...maybe the PARP took cancer out of the nodes and was successful that way as the doctors were all shocked I had 0 positive nodes. I then started chemo locally with my oncologist (with recommendations made in consult with Dr. Telli) I've now completed four rounds of AC. Started Taxol with horrible allergic reaction and had to be switched to Abraxane. Also, doing radiation concurrently with the Abraxane. If I were doing this over would I do the trial....absolutely. It gave us information about the tumor and knowledge of what class of chemo that didn't work.So, neo-adjuvant therapy is good in that way. Hopefully, others will benefit from my participation. Are you BRCA positive or negative? I'm negative and I think the PARP is more successful in BRCA positive patients.
All the best to you,
DDG1
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99Sporty,
Please read my post directed at Susan. I would highly recommend neo-adjuvant chemotherapy. My oncologist and TNBC oncologist at Stanford both recommended this to me. There is no way to know how your tumor cells respond to the chemo if you take it out first. If you have neo-advuvant therapy you KNOW how the tumor responds. This way you can do a second round of chemo of a different category if the first type of chemo wasn't successful. I recommend you get a second opinion from an oncologist, and hopefully one that has experience with TNBC.
Hope this helps,
DDG1
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Well sporty..you are one of us for sure now...I've been reading up on HER and yes..they do have drugs for it now...but it is highly aggressive too...I was weakly positive for HER..I think 2% so no herceptin for me...
I know TN is aggressive...but..on the other hand..you have to take herception for like a year...and if you read about the tamoxifin...some women have tons of side effects.
Personally...I like being drug free...after chemo..we tn's can just heal...I like walking and running, I like drinking my green tea. ..I like not popping pills every day...(except for my vitamins)...
I'm hurting though today..ran into the door frame of my closet...full speed...with my foot..ouch....maybe not be running tomorrow!
Monika..good to hear from you and glad things are going well...it's exciting isn't it..to get back to normal..
MBJ....I don't always agree with things that may cause breast cancer..but I kind of agree with you on the stress thing...I think stress may cause something to happen..not sure what..but something...in our bodies. I try not to stress myself out so much as before..but it is not easy.
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DDG1 - I don't feel any one of us can tell someone else with bc that they SHOULD have neo -adjuvant chemo. That was the choice you and your doctors made. However, that does not necessarily mean it is the right choice for everyone. There are many factors to take into consideration and we, as participants on these boards, do not know everything about each other, and should respect the choices each of us make.
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What is pCR? I've never heard of that term.
monisch - sorry to hear that the puppy bite would be so bad. One of my cats accientally scratched me with her back paw. I was soooo afraid it was going to get infected. I'm so glad it all worked out in the end, but how scary!!!
Swanny - I had 10 treatments so far. 23 left to go.
Ironically, I saw the news about Elizabeth Edwards, while I was waiting for radiation. Everyone in the room stopped what they were doing when the news came on about her. Cancer sucks!!!
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Hi All,
Had a bit of a meltdown yesterday (via email) with a friend that was treated for TNBC last year. Bottom line is I was SOOO frustrated trying to find a surgeon that I could get an appointment with to get a port installed. The surgeon that did my biopsy wouldn't schedule a port placement until she met with me to go over the MRI (that has to be redone) and discuss doing surgery pre-chemo. I tried to explain that I was set on neoadjuvant but got nowhere....my wonderful friend then called her surgeon (that I had wanted to see but couldn't get in b/c she wasn't taking new patients). Her surgeon's office called me today with an appointment for Monday! Very happy about that.
DDG1 - I hope you are seeing response to the AC/T protocol since the other didn't work on your tumor (but maybe the nodes?). I don't yet have BRCA info - waiting for my appointment with the genetics folks later this week. I too have read that BRCA+ seems to respond better to the PARP inhibitors (although I didn't book mark the study I read and now I can't find it again....been reading LOTS, maybe too much...).
Kittycat - pCR is a 'pathologically complete response' - no cancer left after neoadjuvant chemo. Seems as there is a bit of variability in what different pathologists define as pCR, but it's apparently a really good sign for those that choose neoadjuvant chemo.
Swanny - thanks for sharing your perspective on the study....I think if I turn out to be BRCA+ I would definitely choose to do it. I'm not sure how long those test results take though, and the study that is enrolling now doesn't allow participants to have had any other chemo prior to the study....how long did those of you out there with BRCA tests have to wait for results? I am going nuts waiting to start doing something - knowing it's in there,dividing and growing unchecked....just ready to start something and DD A/C + Taxol seems like the current standard of treatment....I wasn't expecting to have choices! Trying to relax and move forward.
MonikaV - is 'fill' reconstruction terminology? I haven't read much about that yet...been focused on treatment. Can I ask - if you need radiation do you have it before or after recon? Wasn't sure if the recon would interfere with radiation and/or if radiation could cause problems and it's better to be done with it before recon? Just curious.
Hope everyone fighting SE's and stress has a peaceful night.
Donna
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I was in my car when I heard the news about Elizabeth Edwards. Cancer sucks and no one should still be dying from this disease. Cancer so sucks.
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gillyone: I agree that no one should tell anyone else what their treatment should be, as we are all different. I did read after having my own neoadjuvent chemo that this is becoming more of the norm as they are having better outcomes with TN's doing chemo first. It isn't always necessary though, especially if it's easy to get to and no lymph nodes are involved. I didn't have a choice. I think as long as you get all the scans and MRI's and they can easily clear the margins, it's fine to do chemo afterwards. Some get it before and after. We are all so different.
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dlcw - fill is a term they use for recon, if you get the tissue expanders. They inject saline into the implants until you get to the desired size (or the size your body/ tissue can take). I found the fills to be painful, but the good news is that my nerve endings healed fast. Most women that have mastectomies (and or recon) don't have to get radiation. However... I had a bilateral mastectomy and recon last year. Then, 8 months later got re-diagnosed with bc (thank you TNBC). Anyway, I am currently undergoing radiation and have completed chemo (AC/T). They usually don't do rads with recon because of the port with the TE's. I already had my exchange implants put in, so it's not an issue for me. I just have to worry about capsular contracture (hardening of the capsule around the implant). I heard that the PARP was more successful for BRCA positive patients (the onco I met at Sloan Kettering mentioned this). That's something for me to remember, since I'm BRCA1+. I'm glad you are getting your port placed!!! YAY!!!
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MBJ: Do you know of any clinical studies comparing 3 or 5 year outcomes of TNs who did neoadjuvent versus adjuvent therapy? That research would be very helpful, but I'm not aware of any data as yet. I do know that relapse rates are very low in women who have shown complete pCR in neoadjuvent... but that's not the same comparison. (Whether to neo or not wasn't a decision I had to make as I didn't know my TN status until after surgery, still I do wonder...)
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Hi all, I have not been on for a while, hope you are all doing well. I am still doing radiation, 7 more to go after the blistering heals. Hoping to get back to it next Monday and finish before Christmas. Does anyone know the statistics for mets after mastectomy? I am starting to have anxiety about mets. Dont know why, probably because a good family friend just died of liver cancer (diagnosed three months ago and died on Thanksgiving day) and a good friend of mine's mother was just diagnosed with mets and given 3-4 months. This disease really sucks. I know they say that bone mets cause pain. My knee has been killing me for 2 weeks and my doctor said give it another week and then come in if it still hurts. I might have just twisted it. It is not a constant pain but is on the inside of my knee and I am petrified that it is mets. Does anyone think there is anything to worry about? Should I get this checked? I must sound crazy...
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Neoadjuvant chemo for TN's articles: http://www.springerlink.com/content/x0q2712638628051/
http://cme.medscape.com/viewarticle/569483
JenC: So sorry to hear of your friend and of your loss. I worry off and on yet all of the time about mets. I have a very dear friend who's BC returned in her bones (back and neck) and her liver. She is going through one of the clinical trials right now. You should know that when she had neoadjuvant chemo, her tumors disintegrated into her blood stream and she refused to do chemo afterwards. She had AC & T. I had TC. Everyone is different but it is a constant threat to all of us and the best thing to do is to be hyper aware of your body and let your dr's know what is going on but to also follow their advice. I hope you just injured yourself and that it heals up quickly. Also, if you have had an injury there before or anywhere else in the body, now is the time you will start noticing pain there again, especially in winter. Hugs.
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I've been MIA due to chemo kicking my butt, but I've been reading along. I wanted to add my 2 cents to the neo-adjuvant discussion.
My oncologist prefers neo-adjuvant for TN for exactly the reasons that have been discussed. She uses it as a tool to get TNs as close to pCR as possible, and has personally had better outcomes with her TNs over the past few years. The statistics haven't caught up to this yet, however.
I'm a good example of how she handles it - we started off with standard treatment, DD AC to be followed by DD T. We did an MRI after the AC and found I had a "partial response" - my tumors had shrunk 50%, and my lymph nodes were down "significantly higher" than 50%. But she wasn't happy with this, so she added Carboplatin to my Taxol, and I'm doing 12 weeks of that (much easier on me!). After 1 treatment, I can already feel changes in my tumor, which bodes well for down the road.
She is also fighting with my insurance company to get 4 doses of Avastin added in, just for an extra kick.
So, while studies have shown that there is no difference in outcome between neo- and adjuvant chemo, it is my opinion that for TNs, neo is usually the better choice so that we can have treatment altered to be more effective if necessary.
I hope this doesn't come off badly - everyone has to make their own choices, and work with their doctors! I am node positive, and I think that can alter treatment choices as well.
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Unfortunately, I wasn't given a choice and didn't know enough then to ask! I didn't even get my TN status until after my BMX.
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MBJ - Thanks for the info and I am so sorry about your friend and hopefully she will do good. Can never tell with this disease. I am gonna give it one week for the knee and call on Monday if no change. Better to be safe than sorry right:)
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TifJ - I'm so sorry, I hope I didn't come off as insulting or upsetting!!!
With clear nodes, I think doctors are more inclined to get the tumor out asap. We just happened to know my nodal status because it was pretty clear on my biopsy that 4 were enlarged, so he checked them along with the tumors.
I probably would have pushed for surgery first myself if I had been all clear. Even adjuvantly, I'm sure your treatments were the gold standard, which still have great success with TNs!!
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Suze 35- No offense taken! I really wish I was given a choice-I don't know that it would have affected my choice, but it's always nice to be given options. Also, I am having tx 3 (of 4) tomorrow and I haven't even had my appt. with the genetic doctor yet. It was originally Nov. 3, but I had so much diarrhea I couldn't go-so it was rescheduled for Dec. 15th. Wouldn't it make sense to know all this before surgery? If I am positive I would have opted for a prophy Bmx on the other side. I think I was so blindsided in the beginning and didn't have enough info to ask these questions. I am comfortable with my TC treatment though, but there's always that thought-did I do enough?
Take care, Tiffany
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MBJ: Thanks for the info.
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Thanks Tiffany :-). Did you have a biopsy done before your surgery? I was told my hormone status based on that and a FISH test (my HER2neu was iffy). I agree - the process really needs to be better streamlined so that we can make informed decisions. I consider myself lucky in that everyone reacted FAST - I was biopsied, diagnosed, had my second opinion, genetically tested, and started chemo within 2 weeks of me finding the lump. That should be standard of care for ALL of us.
I'm sorry to hear you had problems with diarrhea - that sucks! I had a few days of that with the AC, and literally couldn't leave the house, even though it was a good day. I totally understand. Yay on coming to your last treatment! As for doing enough, I'm the type of person who would probably do TOO much - I'm sure even if I get a pCR, I'll be begging for chemo after surgery "just in case" lol.
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Got an e-mail from the Triple Negative Breast Cancer Foundation. It mentioned a new study so I thought I would post it:
Other Symposium highlights included a research presentation by Andres Forero, MD, of the University of Alabama at Birmingham Comprehensive Cancer Center. Dr. Forero shared recent findings of his team's ongoing work to develop a targeted therapy for triple negative breast cancer. The team, along with 14 of the 16 members of the Translational Breast Cancer Research Consortium, will soon open a Phase II clinical trial using TRA-8, an antibody that targets the human death receptor 5, plus Abraxane to treat metastatic TNBC.
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Suze- yes, I had a biopsy, but my BS said she preferred to wait on the path reports from surgery before announcing receptor status. Maybe that is just her opinion. She is one of the most highly respected BS in Kansas City-I trust her, but wish she had suggested genetic testing before surgery. Oh, well-I guess no sense in griping about it now-what's done is done and I will deal with anything else as it comes along!!
I can't believe you had everything done so quickly! I had to wait a week between mamo and MRI. A week between MRI and Biopsy. 3 weeks between biopsy and surgery. Seems to be the norm around here.
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My daughter was diagnosed in Feb 2008,had surgery,not in nodes there was a bit he couldn't get but thought chemmo and 6 weeks radiation would fix it,Feb 2010 it is back in her neck, between her breasts all her lymp nodes,she did chemmo again also went on PARP trial,they took her of trial end of Sept as she collapsed with fluid around her heart,since finishing chemmo it has also come back in the right breast,she was told it is inoperable,her docter wants her to do more chemmo ...another one....so far she has refused and is doing vitamin c injections,she has had 3 so far,last week she had 1.2 litre of fluid removed from her lungs,she has to see dr on Tuesday to decide about chemmo,which she has been told will only give her a few weeks or months,they dont know,she says she the 3 lots of chemmo have done nothing except kill all her good cells and all the other side effects.....chemmo is poison...she is 39....there is something wrong in this world when so many people are getting cancer and we except it as the norm instead of getting pissed of and demanding answers....NO MONEY IN A CURE!!!!!!!! hope you don't mind a good whinge,good luck to you all.
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MonikaV: Sounds like your first fill went well. I need to check out the picture forum to learn about reconstuction.
dlcw: I feel like surgeons are often quick to rush you to surgery and don't always encourage patients to have neoadjuvant chemo. Mine did suggest neo, but once it started working, she wanted me to stop and do surgery. I told her no, I want to finish chemo.
Suze35: Sounds like you have a great oncologist. I agree with you, neoadjuvant can be a great tool for triple negative patients, especially those of us who have large tumors and/or node involvement (locally advanced). I had at least one positive enlarged node and after chemo, they were all negative. I went from stage 2B to stage 1a. Triple negative patients are more likely to get a pCR, which corresponds with an excellent prognosis, from what I hear. I am hoping with new chemo drugs, the pCR rate will end up even higher, like 45 percent .
I hope you have great success with the Carboplatin, and hope you end up with a pCR.
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Tif - I think everything just fell into place quickly for me - my GYN squeezed me in the day after I found the lump, and sent me right over for an U/S (Friday). The poor radiologist thought I already knew I had cancer! Everything just steamrolled from that point. The only thing that came later was my PET scan, which I had the Monday after starting chemo. It is still a blur - and will probably come back as a very traumatic two weeks when I am through treatment :-(.
I am thankful EVERY day for how fast and wonderful all of my care providers have been. And it sounds like you feel the same about your BS - which is so important! I am going to a different surgeon than the one I first consulted with because I wasn't thrilled with her at first, and her port placement was awful - traumatic surgery and she left a permanent stitch sticking up poking at me painfully, ugh.
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Lynn18 - thank you so much for the kind words and encouragement.
MJB - thanks for those links!
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I had my port placed by a sugeon at my cancer center- who does only port placement! The procedure was very easy-no problems. My incision lines are minimal, but I am still anxious to get it out after chemo!
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Nervous I am having pains in my right knee and a temporal headache for most of the day. I did hit my knee a while ago, but I am still asking questions. I am taking nothing for granted. Maybe my mind is playing tricks on me and wondering since I heard about Elizabeth Edwards.
Urghhhhh! Venting!
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Fighter- that just sucks having to worry about every little thing. I see my onc tomorrow (tx 3) and I want to ask him about my bmx scar. I feel a small knot underneath the scar. Could it just be scar tissue? I have mentioned before that it feels like there is space between my scar and the expander-so when I push on the little knot it seems to disappear. Any thoughts anyone?
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