Calling all TNs
Comments
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I had 4 A/C, one taxol and 3 taxoteres.
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I had 4 ac and 4 taxol (isn't taxol about the same as taxotere) once every two weeks....I think I had alot...they said they threw it at me because they knew that I could take it...since I'm still fairly young (49 at the time of diagnosis)...I used to get a cold or two but I never ever got the flu or anything..nothing...
On another note..talking with a friend/co-worker today..she has had numerous back surgeries, has to have a hysterectomy, has 4 young boys, marriage in trouble (her husband is an ass) and now she has a "spot" in her breast..she said it is deep in the breast..after a mammo and ultrasound she is seeing a breast doctor next Friday..she was in tears..she is also in so much pain from her back and now this..my heart goes out to her...she is young..45 or around there...her mom is just finishing up herceptin. We talked about the "why me..why not me" question...she said that she has to be there for her boys...I hate this...I just told her that IF it is something that she is not going to die tomorrow. I just hate it that she has to go through this along with everything else...
Thanks for letting me vent...this is just bothering me.
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- I had 4 A/Cs, every other week, and then 12 taxols, once a week. My hair started coming back halfway through the taxols.
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Fighter..so your onc said that we tn's are getting more treatments than previous tn's? I wonder when they added the taxanes to treatments. A co-worker of mine is also tn..7 years out now..she had a single masectomy..plus 4 AC's..3 weeks apart..she is absolutely fine..she is my rock...every time I get a little down I think of her. Her tumor was 1.2 cm.
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Titan: So sorry to hear about your friend. I hope she does okay. Please let us know what happens. Hugs.
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TItan:
Am hoping there is nothing in your friend's breast. God knows, she's got a plate full already. Please tell her she's got a lot of us wishing her some good news.
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Linda and MBJ..I will tell her...I gave her a copy of the Birad's score information and she was going to look at her report..her doctor said it was "ductal"..which I take it to mean that whatever it is is still in the ducts...which would be a good thing..
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The step-by-steps in my case were biopsy, a preliminary diagnosis and then surgery, finally treatment. Do you guys agree that treatment should only be given once a full scope of the disease is determined, which is by the pathology report? Someone I know recently got her MRI results and her doctor has already told her that she will get a lumpectomy and radiation. Her tumor is 1.7 cm and there is a suspicious area in her axillary, however, she had had a prior surgery in the axilla so they are not sure if it is cancer or just scar formation. I wondered how the doctor can determine the treatment only after an MRI. They need to look at the receptor status and the extent of the tumor from the pathology report, before they can decide that she will forego chemo. Are you guys in agreement with me? I am worried about her as she belongs to a hospital which, in my opinion, is the worst, they almost don't care and really delay everything. I am praying that she gets the proper treatment.
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I'm having 4 rounds of TC... one more to go here. Not sure why some have 6 rounds, but my tumor was 3 mm, no lympho/vascular invasion. Maybe I'm an oddball, but I have stubble that started growing back in on my head after the second round. It seems to be more in some areas than others, but something is definitely growing... and it's that white/almost transparent color.
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Lovelyface: I agree with you! The first hospital I went to was City of Hope and they were going to radiate me without the pathology report and I never had lymph node involvement nor did I need it because I had to have an MX. I would advise her to get 3 opinions. Insurance covers this!
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I am having 6 TAC, #5 this coming tuesday, 3 weeks apart, Then surgery, The onc and BS are both still talking about more chemo (? what kind) after surgery, then rads. THEN we will talk about recon. I did have lymph node involvement on the biopsy and 2 nodes were mentioned on the PET scan.
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Hi Beccad - probably a dumb question, but what is TAC? Is it the same as ACT? or is it different drugs? I'm going to do a 'traditional' chemo after I finish the trial I'm on and I was assuming ACT was what TN with nodes got but it seems like there's some variability.
dlcw
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dlcw..I didn't have node involvement but I had the AC...plus the T! plus 33 rads...I consider myself total chemoed and zapped...mostly I feel good about this...
Lovelyface..when i was first diagnosed by BS said i would probably have just rads....maybe chemo.....I think it is up the oncologist to decide based on the path report.
I love my BS..but when it comes to treatment the Oncologist is the one that I rely on the most for everything... the Onc's are the ones trained in cancer and it's treatment..though my BS gives a great breast exam and he was on the one who took out my lump with excellent margins...I think I love them both..
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taxotere/adriamycin/cytoxin Not sure if I spelled them right. That is how my onc spelled them out to me. I don't know if that is the same or not. I think when the T is at the end it is Taxol. Does somebody smarter know?
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I had AC X 4 (Adriamycin/Cytoxin) and then T (taxol) X 4, every two weeks, also referred to as dose dense.
Titan - I was wondering if yours was also dose dense, or was it every 3 weeks. I got 23 rads, not 33, wondering why.
Today, I have read somewhere that drugs such as Tamoxifen or Aridimex can worsen some cancers. In my opinion, I was very low on estrogen before my cancer began due to menopause, and now they want to give me aridimex, which reduces your estrogen even more. I am so scared to take this drug, what if my cancer comes back due to the drug. No one, not even the researches know why we get triple negative cancer. At least with estrogen positive they can tell, but with negative. I personally believe that whoever is low on estrogen, they are the ones who get TN due to my experiences. I am really scared to take aridimex or even tamoxifen, don't know what to do. All the docs I have seen are in favor of me taking anti-hormone therapy even if there is any positivity. In my case it is 5% progesterone positive, which is really regarded as negative.
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Lovelyface: If you are looking for alternatives to doing the hormone therapy, then you really should go to breastcancerchoices.org
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I too had TC x4. My onco told me she has never heard of doing 6 rounds of it. I told her I knew someone who was doing it and she seemed very surprised. Later I mentioned that friend being involved in a clinical trial and she said that may be why they did 6 - so that the overall length of treatment was comparable to others in the study. It seems that most do 4, but I occasionally see mention of 6 rounds here and I personally know someone who did 6.
I was also told that TC is not as aggressive as AC + T. Per my onco, TC is equal to or better than AC, but there have been no studies of it as compared to AC + T. I found this confusing as the "T" that makes AC+T is a taxane, as is taxotere in the TC, so logic (lol . . . no logic in cancer) would seem to dictate they are comparable. I also thought I read somewhere that taxotere is stronger than taxol, but I could be wrong about that.
My onco would have insisted on AC+T if I had positive nodes. As long as they were negative, she gave me the choice of the two. I was afraid of the heart issues with adriamycin (sp?), so I went with TC. Plus it was shorter.
As some of us have commented before, each bit of information seems to have a countervailing point of view. I have no knowledge of disease or health issues beyond cancer. Are other diseases as much of a crap shoot as this one?!
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Ladies, my hair finally started falling out last night...So today died it blue, cut a mohawk, and then shaved it off...Emotional, but nice to just get it over with!!! Tired of worrying about it...My DH also cut his too...
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Oh, Moe, it is emotional, isn't it. Anyone who says "its just hair, it will grow back" has never been through it. I cried for hours when mine came out. It shedded lightly for 3 days then all came out in one shampoo. God, it was horrible. But I have not cried about it since. . . it was surprisingly easy to get over it.
The picture of you and your husband with your shaved heads is adorable.
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Great pic Moe! YOU and your DH are awesome looking! You look as sexy as hell...the glasses just top it off....When I was bald (yes..you will have your hair back sooner than you think)...my DH's friends though it was sexy..heck..my DH thought it was sexy...Once I got used to being bald..I would take my wig off (with friends)..and just relax...they didn't think anything of it... my kids were even OK with it after awhile...
One night a cute little boy scout stopped at our house to sell us popcorn and I bought some and talked to him...(forgot to throw on the wig)... I still wonder if I freaked him out; however, I really don't think it is such a big deal anymore...with breast cancer awareness..when you see a bald woman, people don't react like they used too...they know what this woman is going through.and I think they admire us.
Oh..and LL..I had dose dense..every 2 weeks....28 rads were normal ones..7 were boosts..for a total of 35...(instead of 33 which I previously stated).
Hmm..so some oncs don't do the act except for node involvement? I guess I was given the big, big guns..oh well..I think I'm glad
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MBJ - thanks much for the referral to the website. I am going to check it out.
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Hi Ladies!
Melissa
I love love love your pic
You and DH look amazing!
Tuesday is the big day for me. Port placement, heart scans and first chemo (A/C). I think I'm ready. DH got me a nice bag filled with stuff to take to chemo (learned from the boards here!) He also got me 8 bracelets (showing in my profile pic) so that I can remove one after each chemo session.
Have a great weekend everyone!0 -
Titan - My onco does not reserve ACT for nodes only, but in the absence of nodes, she is okay with either TC or ACT. I think she would have preferred that I do the ACT, but I chose TC and she was "comfortable with that." I vaguely remember her saying something about the benefits of anthracylines, but I was hell bent on not doing those because of the risk of heart SEs.
I think I am only doing 30 rads - five of which are boosts. Maybe I am remembering that incorrectly. I will have to ask about that. Seems like most are 35.
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Melissa great picture. What a supportive husband!!!
slc - will be thinking of you on Tuesday.
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Let me edit myself. My mind is gone. My ONC said we will be the first group of TN's with more survivors than previous groups. So I hope that makes everyone feel a little better. As far as treatment goes I was just curious as to way we all don't have a standard practice of care w/ additions to address certain individual needs.
Thrush is really kicking my butt this time around. Any suggestions??
Hope your friend situation works out for the best.
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irr4993: My ONC said the risk of heart problems later in life was too great from the (red devil), and think about it heart problems is the number one killer.
The six rounds of TC is the trial. Your treated as if your stage 4 w/ hopes of a better outcome. That's why I was wondering why a lot of us newbies aren't getting this option, or at least know of this option.
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I'm glad that we were given everything possible!
Good luck on Tuesday slcst12! We will be thinking of you! Great idea with the bracelets!
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Fighter: Thank you for the great information. I vaguely recal my Onc telling me the same things but it feels like so long ago. I received the 6 x TC when they thought I was Stage III and this was on order of the BS I fired, my Onc thought it was overkill.
Titan: I have to assume they gave you the big guns because you had a lumpectomy not a mastectomy. Maybe they would have gone with TC with an MX in your case had you gone that route.
Melissa: Cutting one's hair off is so emotional--it's the only time it hit me that I was really sick. I love that your DH cut his too! That is sooooo awesome! Since I had already bought a wig and wasn't planning on going anywhere bald I guess my DH didn't thin that was necessary. You look awfully cute without hair and so does your DH! And a Blue Mohawk! It's kind of like reliving your not so punk youth, huh? Hugs! It does get easier once it's off and you are done with it. Come join us on the Hair, Hair, Hair thread ifyou haven't already.
slcst: Love your new avatar! What a great way to go about having chemo. We will all be sending you good thoughts!
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Lovelyface: Come to the Hair, Hair, Hair thread. There is a woman who posted today that her Onc allowed her to go off the Arimidex because her hormone postive response was so little and the side effects were so high.
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MBJ- typically I don't think lumpectomy vs. mx would have anything to do with choosing ACT vs. TC. It's the zero nodes that usually does it. My onc (and others too) have all stated that using ACT with early stage no nodes is akin to swatting a fly with a bazooka. The risk (of the A) does not outweigh the benefit of just TC.
MSK recommended ACT as their first choice (due to the TN aspect) but were OK with TC as a "second suitable choice". My (local) onc definitively stated his preference for TC alone due to the cardio toxicity of A. I'm very glad he did, as heart problems down the road (possibly years later) were not something I wanted to add to my list of ongoing worries. I have to admit I was a bit nervous deciding against MSK's "first choice", but the heart issues really concerned me (not to mention the thought of a port, which really personified the "I AM SICK" mentality).
I feel SO lucky to have avoided lymphedema and neuropathy with my treatments, and hope to stay that way. After a decidedly unlucky cancer diagnosis I feel lucky indeed to have thus far avoided the miserable SEs of treatment.
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