New Posts New Posts RSS Feed - Adjuvant therapy for residual disease?
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Adjuvant therapy for residual disease?

 Post Reply Post Reply Page  <123>
Author
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2016 at 8:46am
Hi Ima,

I also have about a month to decide....radiation ends mid-February, but I'm seeing my oncologist February 27th and will decide that day.

Interesting/so funny your oncologist wants you to do it and you are the hesitant one, and I have the opposite--I want to do it and my oncologist is hesitant! LOL  Maybe we should switch doctors ;-).

I agree about the tolerability and the option to just stop--this is part of why I think I should push for it.  I don't see a real downside in starting it.  First of all, even in the study in Japan, less than 50% of the women completed the full 8 doses at recommended dosage level, and they STILL saw these results.  From what I've read, the biggest side effects are hand/foot syndrome (which I know in severe cases can be awful, but if not severe, seems manageable), diarrhea (yuck), and low blood counts.  I don't see much in terms of long-term damaging side effects (and--yippee!--no hair loss, so our hair could grow back!).  Is there a reason it's harmful to start and not complete treatment?  Like with antibiotics?  I don't think so?  So it just seems like a good idea to try it and if it's awful, then stop.

I hear what you are saying about wanting to even further dissect the results within node-negative TNBC patients.  I think you are talking about percentage shrinkage....that they don't really seem to account for this.  The RCB calculator doesn't take into account your starting point, just the absolute amount of residual cancer.  So it treats a woman who shrinks from 10 cm to 1 cm the same as a woman who shrinks from 1.2 cm to 1 cm, even though there is logic to suggest the first woman had a more impressive response.  I don't know why this isn't part of the calculation and whether or not it should be.  There must be some reason they leave it out of the calculation, since I presume they aren't dummies, but it seems logical that percentage shrinkage would be a factor.  Maybe it's just too difficult to accurately measure volume shrinkage?  The calculator does include "% cellularity" of the residual tumor, but that's just based on the final residual tumor, not change.

If you don't mind sharing, are you at Dana Farber?  I see that you are in the Boston area. I am very happy with my oncologist in Rhode Island, but since I'm having trouble with this decision, I am thinking about going back to Dana Farber for a 2nd opinion.  (I went to DF for a 2nd opinion in the beginning of this diagnosis, and was thrilled that they suggested exactly the same as my RI doctor, so I didn't feel the need to keep driving to Boston!  So I just went up there once, but could go back this month).

Bethie, I will try to call you later today!  I got your message, but have been swamped, sorry, and the time zone difference has thrown me off ;-).

Good luck and thanks, everyone!

Tulips

Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
ImaJ View Drop Down
Groupie
Groupie
Avatar

Joined: Jul 20 2015
Location: Newton, MA
Status: Offline
Points: 68
Post Options Post Options   Thanks (0) Thanks(0)   Quote ImaJ Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2016 at 10:36pm
Hi Tulips,

So I am getting my treatment at Newton Wellesley Hospital in Newton, and just like you I got a second opinion at Dana Farber after being diagnosed.  Since they recommended the same treatment as my NW oncologist I decided to stay at NW since it is way easier for me logistically.  I had picked NW because of a a surgeon there who came highly recommended.  But I too would be very curious to hear what the team at Dana Farber says about this new study.  I understand that Dana Farber, although active in the research department, is not necessarily the hospital that is first to try new treatments, so I wonder if they would lean towards waiting until more data is out.  But who knows!

Can you remind me why your doctor is hesitant about adding Xeloda.  My doctor definitely wants it to be my decision, but interestingly she did not recommend Carboplatin be added to my Taxol because of my BRCA negative status, and actually the oncologist at Dana Farber agreed with that.  What was the reason they added that to your treatment?  And did you start with Taxol/Carbo and then AC?  I remember reading about reversing the order but forget what the benefits were supposed to be.  

And yes I was talking about percentage shrinkage, wish it was included, but you are probably right in that the measurements seem not that reliable.  E.g. my tumor was 3.5cm with an ultrasound, but jumped up to 7cm with the MRI, which is why I am now told the initial tumor was somewhere around 5cm.  Is there any info about when they will report more data?

If you do go to Dana Farber would you mind sharing what their recommendation is?

Thanks Tulips!

ImaJ 
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 9:58am
Hi everyone!

ImaJ:  My oncologist is very big into research and research ethics.  He has been the lead investigator in a major TNBC trial involving carboplatin, and a participating investigator in many other research trials.  As such, I think he doesn't really believe in throwing medicines at the problem willy-nilly, even if logic suggests they could possibly help, without solid proof from studies (he will cite loads of examples of things that really, really seemed likely to work, but once the trials were done, turned out not to help and were therefore needlessly toxic and harmful).  He would not give me the carboplatin in my neoadjuvant chemo outside of a clinical trial (that's what I initially wanted to do).  But he explained that he personally couldn't do that; if he did, that would imply that he really believed/knew that carboplatin is the better option, and therefore it would be unethical for him to have other patients participate in trials where they would either get carboplatin or placebo (on top of AC/T)--if he knew placebo to be the inferior choice, he shouldn't allow anyone into that trial.  I'm not explaining it well, but it made sense to me.  I think you can be by-the-book researchers, or a little more flexible, and my doctor is more of a by-the-book researcher.  Just as what you said about Dana Farber above (that they are active in research but not the first to try new treatments), I think that is common among the big research hospitals.  So I had my carboplatin as part of a clinical trial.  We know that I received the carboplatin based on my blood count reactions (I had carbo every 3 weeks and there was a clear plummeting in my blood counts every 3 weeks that matched up with the carbo), but I don't know if I received veliparib or a placebo as the other part of the study.

So, you asked why he is hesitant about adding Xeloda.  I consider my doctor brilliant, completely, completely, completely on top of all the research (he has a crazy encyclopedic knowledge of every article written--no matter what I ask him, he answers spot-on, and will quote studies with their journal publication dates/authors for me to go read, all memorized), but he doesn't like the idea of deviating from truly proven medicines, because he emphasizes that he is weighing the certainty of the toxicity of the medicine vs. the uncertainty that it might help.  So I think before the December presentation of Dr. Toi's findings, there really was possibly no evidence of adjuvant chemo helping in our situation.  Now this new study is compelling, but to a certain extent it contradicts some prior research, so I think he would like to see additional studies confirm these findings.  The doses of capecitabine that the women had in the study were higher than most women in the US can tolerate,  the node-negative women didn't see a huge benefit, the neoadjuvant treatment that the participants had were not entirely consistent with the protocol we have here so may cause the results of the adjuvant chemo to be different, possibly some other questions, etc.  I understand why he would want more confirmation and additional studies, but hey, I don't have 10 years to wait for those studies!  I think if I was RCB3, he would find it more compelling, but he says I was just barely RCB2, close to RCB1, so he see my prognosis more favorably than I do.  He puts a lot of emphasis on the node-negative part (but I think doctors would emphasize whichever is the sunniest part of your diagnosis to make you feel better--for someone else there might be a different factor to emphasize).  I think he thinks I'm likely to be fine.  But "likely to be fine" (not his words, I think he said I have a "reasonably good prognosis") isn't too reassuring to me.

I guess that I'm caught up in wanting to do everything I possibly can, and I am encouraged by thinking that capecitabine doesn't seem like it has the worst side effect profile, and I also figure if I'm miserable, I can stop it.  So I'm pretty hung up on trying it.  I believe my oncologist told me at our last meeting that he does not recommend it, but there have been times where he has been willing to prescribe something that he didn't fully recommend, and let's talk about it when we meet in late February.  Perhaps he's hoping I'll be burned out from radiation and will want to drop it ;-), but I also think he wanted some time to discuss this with other colleagues and try to re-watch the presentation (he was there for it in person) or otherwise learn more about this study.  I really wish he and I were on the same page, because I doubt myself somewhat since he clearly doesn't think it's a great idea for me.  So confusing!!!!!!

Laika_in_Space:  I misread one of the posts and thought it came from ImaJ, I didn't mean to ignore you!  Just noticed that you had your last chemo a few days ago--congratulations!!!  And good luck with your upcoming surgery.  I hope you have no need to think about additional adjuvant chemo--my fingers are crossed for a perfect pCR for you.

Thanks everyone,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
ag23 View Drop Down
Newbie
Newbie


Joined: Jan 21 2016
Location: Boston
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote ag23 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 11:14am
This is an interesting dialogue...it's one that I just had with my MO this week.

I'm 36 with two kids (11 months and 4 years ) and was diagnosed in October (BRAC-).  Although I'm TN, I was found to have about 30% PR receptors present.  So, I'm an odd case I guess.

I just finished 4 rounds of AC and 3 rounds of Taxol. Unfortunately we are skipping the last round of Taxol because my tumor has not responded well.  "Shrunk" from about 2.3 to 2.1 cm.  Obviously this has me very concerned because I know a bad response to chemo does not bode well for me long term.  They are trying to schedule the mastectomy ASAP, hopefully in the next 3 weeks. 

I asked her about adding carboplatin since there has been some encouraging news, but they decided against this (it's not their standard treatment for TN) and go to surgery.  My MO discussed trying to get into a trial for Cisplatin or Xeloda following surgery.  From what I'm reading though, it doesn't sound like either has yielded great results.  Please tell me I'm not destined to have this cancer reappear since chemo didn't work for me.  I'm not even sure I could get accepted into a trial - was already kicked out of one because of those darn PR receptors.

What else should I be considering?  I feel so hopeless and powerless at this point.

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13470
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 11:38am
ag23,

I'm so sorry it doesn't look like the neoadjuvant chemo has responded to your tumor.  There are many options for you to consider after mastectomy.  If you can't get into a clinical trial, can you ask about Carboplatin/Gemzar?  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
ag23 View Drop Down
Newbie
Newbie


Joined: Jan 21 2016
Location: Boston
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote ag23 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 11:47am
Thank you.

I have asked about Carboplatin, and my MO doesn't consider this as an option.  It seems like my hospital doesn't typically use this in TN treatment.  But, if I cannot get into the trial, I would think that there is something they could do to get it to me - some sort of exception.  I was interested in trying it before the surgery so I would know if it worked, but they are emphatic about moving the surgery up to ASAP.
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 1:01pm
Hi AG23,

So sorry you are dealing with this!  

It is my understanding that there are doctors who are more flexible about using non-Standard-of-Care medicines.  For example, there are definitely many, many doctors who will prescribe carboplatin, although this is not SOC, and I have a friend in Massachusetts, who was Stage 3, whose doctor said if she didn't get a pCR, they would use capecitabine after her mastectomy if she was RCB2 or RCB3 (yay--she found out last week she got a pCR).  He had told her this back in November, before the study even came out of Japan showing that capecitabine/Xeloda could be effective in our situations.  So clearly, there are doctors who will do this.  I think you *may* be more likely to find them at non-research-based hospitals.  So if you want more, you might seek a 2nd opinion at a totally different kind of hospital than where you are.

So your MO doesn't see carboplatin as a good option for you, but does she have other ideas instead?  I have to say, I am BRCA negative, and I don't think the carboplatin I took did much for me.  My tumor had a so-so response (shrunk from 2.2 cm to .8 cm), and I guess it's hard to say which parts of my regimen were most/least effective, but my hunch is that the Taxol was the best of my medicines for me.  So anyway, I guess what I'm saying is that if I were you, of course I'd want to be doing more, but I don't think it's clear that carboplatin is the top option for BRCA negatives (although, you'll see if read a bunch, there are people who are BRCA negative but still exhibit BRCAness, and it may help them).  Maybe the Gemzar, or maybe capecitabine(Xeloda)?  I wonder what your MO thought of the new study out of Japan regarding capecitabine in TNBC.   Or the copper depletion medicine?  Or something?  I think there are supposed to be trials for immunotherapy drugs?  Good luck!!  I wish I had more helpful information!
Tulips
PS Also, keep in mind always that there are many, many people who only had chemo after surgery, and they have no idea if their chemo "worked."  And even if it didn't "work", a large proportion of those people are just fine.  I do like to think that eating healthy and exercising are some of our tools to prevent recurrence.  Also, since you were PR+ it seems, wouldn't you be eligible for some of the hormone medications that prevent recurrence?  Are you TNBC, or ER-/PR+/Her2-?  You might have more options based on the progesterone piece.
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
ag23 View Drop Down
Newbie
Newbie


Joined: Jan 21 2016
Location: Boston
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote ag23 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 1:54pm
Thank you, Tulips!  If you want to write me every day to tell me that people who don't respond well to chemo may still do well long-term, feel free :o)  I LOVE hearing that and so need it these days.

They are classifying my tumor as TN, but they do plan on performing some additional tests once the tumor comes out.  I guess it's strange to have only PR receptors, as usually ER and PR are tied together somehow?  Anyway, from what I've read, some doctors say any PR is positive, but my team is considering it "weakly positive" but still triple negative.  I'm interested to see what they find when the test the little nugget after surgery.  I wish they would allow us to set the nugget on fire or throw it in the ocean :o)  I dream about that!
Back to Top
ImaJ View Drop Down
Groupie
Groupie
Avatar

Joined: Jul 20 2015
Location: Newton, MA
Status: Offline
Points: 68
Post Options Post Options   Thanks (0) Thanks(0)   Quote ImaJ Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2016 at 11:05pm
ag23, I understand your concern.  I wonder if you would qualify for some studies or trials at Dana Farber.  When I spoke with them they had one for TNBC that did Cisplatin or Carboplatin with radiation.  I know you are getting a mastectomy, but do you mind telling us why they are recommending that over a lumpectomy.  Only asking because I believe it has been established that getting a lumpectomy plus radiation gives better results, I guess unless you are BRCA positive?  Am I wrong about this?  And then I was just talking to my surgeon on Tuesday and she mentioned as we were talking about the importance of radiation how there is more evidence now to support this, that lumpectomy plus radiation gives better results than a mastectomy.

I hope it goes well whatever you do xxxx

ImaJ    
Back to Top
ImaJ View Drop Down
Groupie
Groupie
Avatar

Joined: Jul 20 2015
Location: Newton, MA
Status: Offline
Points: 68
Post Options Post Options   Thanks (0) Thanks(0)   Quote ImaJ Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2016 at 12:00am
Tulips, I heard from two doctors today, one is an oncologist (a friend of a friend) in Wisconsin, and the other one is a general medicine doctor at a local hospital, and both of them read the study results.  They both argue, perhaps as expected, that in order for this to become standard of care here there would have to be an independent study done in the US.  But more importantly they point out that as far as they can see in the results there is not enough evidence to say that triple negative node negative patients are receiving more than 12% rise in 5 year DFS, that there are too many variables.  The study mentions too that more work needs to be done in TNBC subgroups, so we can guess that is referring to node status and perhaps RCB status.

My General MD friend also points out that even if my rise in DFS was 30% with Xeloda, based on my HR- status, and say I am currently at 85%, that would only bring me up to 89.5% DFS, which I wouldn't throw out the window, but it just seems so dependent on so many variables.  And that is probably giving me a higher rise than is realistic given I am node negative and it is really unclear from reading the study how to tease out exactly how those variables would change the outcome of the study.

In other words I am feeling more like we just don't know enough.  I am going to sit on all this info and digest.  I am not sure what percentage point in expected DFS improvement will make me go for Xeloda, if it has to be more than 5%, or if it doesn't matter as long as there will be some improvement.  Just have to sleep on it, and I have time.  I am going to e-mail my oncologist to voice all those concerns and see what she knows that I don't.  After all she was at the conference.  Speaking of which, do you happen to have a link to the audio you mentioned?

Thanks for thinking this through with me!  It helps that you are leaning in the other direction, gives me the necessary things to think through Thumbs Up

ImaJ
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2016 at 12:10pm
I also got a "curbside" opinion from an oncologist friend-of-friend at Duke.  She said that at this point, she would not recommend additional treatment, but found the study presented at San Antonio compelling, and if the patient (i.e., me!) was insistent, she would consider capecitabine.   And then the other oncologist, my friend's MO, would prescribe capecitabine in the case of RCB2/3.  So it looks like there is a mixed bag of how MOs would handle this, although I'm sure everyone wishes that additional studies were already completed and confirming!  Sure would be great if there was consistency.

I really hope to hear back from Dr. Toi or his group, but maybe that's unlikely.  I'm leaning toward thinking that logically the response we should expect based on that study is much greater than 12%.  2/3 of the overall patients in that study were ER+/PR+/Her2-, but those are also more likely to be node-negative than the TNBC cancers (because TNBC grows more quickly, it is less likely to be caught at the node-negative stage vs. the ER+ cases).  Therefore, it is logical to assume that LESS than 1/3 of the node negative patients were TNBC, and so the node-negative results (the 12%) would be heavily skewed towards the ER+ patients.  The ER+ patients overall had only a 16% response (vs. 42% for TNBC), and that 16% is awfully close to the 12%.  I believe that the node-negatives were made up of a lot of ER+ patients, and that the TNBC people (at all node stages) would have responses closer to the overall 42% rate.

At first, I had some false logic that made me think that it made sense that node negative people might have a lesser response because maybe their prognosis was good enough to begin with, so you wouldn't see much of an improvement.  But then *DUH!  LIGHTBULB!*, I realized that what we are talking about is a percentage improvement over the existing risk.  So yes, the absolute number of percentage points improvement would be less in the case of node negative patients, because perhaps their starting risk of recurrence may be just 20% vs. people with ypN3 might have a 50%+ risk, and x% of 20% is much smaller than x% of 50%.  But there is no real logical reason to think that the percentage improvement would be drastically lower based on node status.  Whereas it is logical to think that the percentage improvement would more drastically differ between TNBC vs. ER+.  Oh wow, I know this isn't making sense the way I'm describing it.  But I guess that in the absence of additional data from Dr. Toi, it strikes me as way more logical that our response would more likely mimic the overall TNBC response (42%) vs. the node-negative response (12%), esp since the node-negative group was primarily comprised of ER+ patients.

So then the important question is, what is our recurrence risk for RCB2 node-negative TNBC (without capecitabine).  It looks like your oncologist told you 15% (which I like!).  Mine said 20-25% for me, but everything I read from studies on the internet leads me to think it is greater than that (unless my doctor is talking about a very short time period, like my risk in the next 2 years, which some studies only go out to).  But as a 45 year old, I am not just interested in surviving 2 years ;-).  I would love to think it is 15%, and maybe I can convince myself of that.  Because my interest in additional chemo really is affected by thinking the risk is 15% vs. 30%!  Totally different stories in my mind.

Wow, I can't wait to make this decision and have it behind me, one way or the other!

Sorry for this ramble.  But it is helping me to think it through together also!  The devil's advocate back-and-forth I think brings out more of the pros/cons for each side!!

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2016 at 8:02pm
Tulips Said, "PS Also, keep in mind always that there are many, many people who only had chemo after surgery, and they have no idea if their chemo "worked."  And even if it didn't "work", a large proportion of those people are just fine.  I do like to think that eating healthy and exercising are some of our tools to prevent recurrence"
 
Just thought I'd say - That would be me!  I had chemo after lumpectomy/axilla excision surgery, 2.2cm grade 3 spread to the lymph node. AC x4, T x4 + radiation.  I've been honest here about the "healthy eating and excercise" in that I've not done anything drastically different.  I've never been a _bad_ eater or a couch potato, but I still eat meat about 4 meals a week, eat sweets of some sort at 1 to 2 times a week.  I walk almost every day and do yoga twice a week - I did all of that before, tho.  I drink less, probably 1-2 cocktails or glasses of wine every 2-3 weeks.  So - living a normal life really.  I'm 52 and was 6 years NED last September. 

My heart aches reading about the tough decisions y'all are making - it's just gut wrenching and stressful and UGH.   I just wanted to say hello, I'm keeping you in my thoughts and YES - you can beat this!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
Syers38 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 02 2015
Location: Uk
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Syers38 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2016 at 3:41pm
Hi Beth
Just reading through your post ,I finished treatment end of October . I'm interested in vascular invasion my oncologist mentioned this to me at start of treatment . I had a massive meltdown thinking that was it or me but she reasurred me it was fine as I had clear margins and was taken with lumpectomy .. In uk we don't get a copy of our report I think they don't tell us everything ...should we be worried about this . My stress levels are up and down by the minute .hope you don't mind me butting in .. I'm going to discuss wth my surgeon on next visit . Love Jan xx
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3611
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2016 at 5:31pm
Dear Jan,
What stage were you when diagnosed?  What chemo regimen did you do?  Vascular invasion is a possibility and that is why the chemo is sooooo important.  It is to kill any cancer cells that may have escaped into the vascular system.  It is a fear that most all of us triple negative sisters have.  The stress you are experiencing is "dare I say it" normal for us TN girls.  I am a nine year survivor, but I remember having the exact stress you are describing.  I wish you the best and pray that you can take encouragement from my post. 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
Back to Top
Syers38 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 02 2015
Location: Uk
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Syers38 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2016 at 4:51am
Hi again
I had 3 cycles of EC and 9 weekly taxol .. I had a 3 cm Tumor grade 3 no lymph node involvement..
I feel like an old woman with aches and pains after treatment .. I hate having Tnbc I think about it everyday .. I do try and be positive but I find it overwhelming sometimes .. Every ache and pain I think it's spread some were else ...
I know all us TN sisters are all probably have same feelings .. So glad you have come so far .. I love to hear survivor stories ...
Did you do anything different to stop reaccurance eg diet , exercise   ..
Have a lovely day
Love Jan xxxx
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2016 at 2:36pm
Yes I wanted to pipe in and thank Kelly and Lillie and Donna and our other longer-term survivors for chiming in.  It really helps!

I definitely feel that once this decision is made (about doing additional adjuvant chemo or not), I will focus on the positive again.  Right now while i have a choice to make, I'm trying to be as analytical as possible, and not just focus on the positive, but once my decision is made it will be time to focus on the positive!  

And I do feel like I've cleaned up my act eating/exercise-wise (was pretty good before, but much better now), so that bodes well for our overall health, too!  Once we beat this TNBC, we will grow to be those fabulous 90 year old marathoners and mountain climbers who are healthier than teenagers ;-)

Good luck to all, and if anyone has further input on doing extra treatment after non-pCR, I'm sure we'd all love to hear it!

Thanks,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
tnbc1984 View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 29 2015
Location: Canada
Status: Offline
Points: 20
Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2016 at 10:22pm
I finished chemo in October and also had residual disease. The residual was 2cm but less than 1% was invasive (the rest was DCIS or dead tumor), no vascular invasion. I don't know what that would be on the RCB index as they do not seem to be as familiar with it in Canada. If anyone can help out, that would be great. 

Based on everything I have read, I was pushing for adjuvant Carboplatin. I have seen 2 Oncologists at different hospitals and both have said no for the same reasons you listed, weighing additional benefit vs. toxicity. I am half way through 30 rounds of radiation then I guess after that it will be healthy eating and exercise for me to prevent recurrance.
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 389
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2016 at 2:21pm
Hi TNBC1984,

It sounds like most of your tumor is gone, and that's great and it probably makes perfect sense for you to be done if the 2 opinions were in agreement.

Below is the link to the MD Anderson RCB calculator.  If you have a copy of your pathology report, it probably has the information you need to compute your RCB.  It does take into account the % cellularity, the % DCIS, the size of the tumor bed, etc.
http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=jsconvert3

I believe that recent studies indicate that if you have an RCB of 1, that your prognosis is every bit as good as RCB 0 (pCR).

Good luck with your radiation!  I went for #26 of 33 today (2 more whole breast radiations, followed by 5 boosts).  My skin is pinkish but not a bit painful, and overall holding up great.  Much better than I expected at this point--I wish the same for you.

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
Bethie View Drop Down
Groupie
Groupie
Avatar

Joined: Aug 12 2015
Location: San Diego
Status: Offline
Points: 40
Post Options Post Options   Thanks (0) Thanks(0)   Quote Bethie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2016 at 5:30pm
So sorry for being absent so long. I made the mistake of going back to work full time and it has cut into my "research" time. I have vowed not to do any kind of research in the evenings since my attitude stinks at that time and I don't want to make things worse.Confused
I am trying to catch up on things on this lovely Sunday afternoon and just read everyone's responses and info. You are a wealth of information and I thank you all! 

Tulips - you are so well read and I value you input so much. I am having difficulty interpreting my path report onto the residual cancer burden calculator. I am not sure what all I am looking at on it to tell the truth. 

My update is that I am doing well with my radiation treatments. They started me on 8 rounds of HDR Accuboost treatments that are now followed by 25 "regular" treatments. They are going well and I have 21 more to go of those. In the mean time I have been desperately searching as to whom I should get my second opinion from. I have been looking for a doctor that is at the top of their game with TNBC. I am willing to fly anywhere in the US to get this. I am still interested in Xeloda. I met with another TNBC patient in San Diego who is also being treated at UCSD (from another Dr at a different location). Our situations are about as similar as you can get and her doctor told her she would do Xeloda after radiation (she is about 1 month behind me). Mine told me that I was "finished" with chemo but after pushing for adjuvant therapy offered me 12 weekly doses of carboplatin in order to monitor my blood counts. I believe I have overwhelmed her with research and questions so I have decided to do all of my research and then get in touch with her again. 

I am open to suggestions for second opinions with this whole adjuvant thing. Maybe even more than one more? I was considering Dr Wilde here in SD as one of them. 

Thank you again for all of the input, you are all so wonderful!

Back to Top
Dporter View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 31 2016
Location: LA
Status: Offline
Points: 28
Post Options Post Options   Thanks (0) Thanks(0)   Quote Dporter Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2016 at 6:51pm
I am following your conversations and thank you for the information. I finished 12 weekly taxol followed by 4 DD AC treatments on jan 19th. I just had a lumpectomy on feb 18th. My tumor did respond to the chemo and I will get my pathology report on friday the 26th. I am also interested in the possibility of adjunct chemo if the cancer is still present. I will research the possibilities before going.
Thnaks,
Debbie
Dx TNBC 7/15; age 52; stage 2, grade 3, BRCA negative; Taxol weekly x 12, DD AC x4 completed 1/19/16
Back to Top
 Post Reply Post Reply Page  <123>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.