A new triple negative friend

OK. Some good news. I received a detailed response from the one of the authors of the article on radiotope markers (what a wonderful gesture that was on her part), who assured me that the one marker I got during biopsy should be more than sufficient for the needle localization procedure prior to lumpectomy. That was a great relief. She also added that a good response to the chemo is also a very good prognostic factor despite the high grade (3) and the ER- status. She also said that they typically see more recurrences in patients younger than 35, so being 47 is not 'young' for them but that's a good thing for triple negative (that was another relief). I was impressed that a doctor/researcher I didn't know will write a very detailed response to my query and provide me with very specific information about my case. After all, there are some doctors who do care for you even if they are not going to get paid or have you as their patient. There is hope!

I was wondering when did you remove your port whether you had neo-adjuvant or adjuvant. My oncologist suggested to wait 6 months after radiation to remove it (I think he is being cautious) and I am willing to wait that long but I'm wodering whether you had a different experience. Of course I realize that it will also depend on the outcome of the pathology report at surgery (recall that I'm doing pre-operative treatment for those new to the list with the last treatment on January 17th followed by lumpectomy, Feb. 6th). Thank you in advance for your input.

Hi, all.



I was just reading the latest journal article in Histopathology (January 2008, vol. 52, Issue 1, 108-118) that reviewed triple-negatives and the main point that was made by the authors was that although triple negative tumors are thought to be all basal like (that typically have the poorest short-term prognosis but respond very well to neo-adjuvant), they are not. ("There is indisputable evidence that the group of triple-negative cancers is heterogenous and does not comprise a 'single entity'"). They found that when they examined a cohort of triple negative tumors, only 56-84% expressed CK5/6 and EGFR (Epidermal Growth Factors) that are typically associated with basal type. The rest were what they referred to as "normal breast-like cancers" that have a "slightly better prognosis" and tend "not to respond to neoadjuvant chemotherapy in the same fashion as basal-like cancers do". So where does that leave us? Unfortunately, the authors claimed that outside of research, no diagnostic tests for these markers are done so doctors (and patients) don't know what subtype of triple negative they are dealing with to match the treatment. Obviously, we need more information and we need it fast but that explains the different experiences some of have us had had with different protocols. I know I'm not teling you much with any concrete piece of advice but if anyone can go to a teaching cancer center, that may be the venue to request more testing and more options presented to you. It is true that carboplatin and cisplatin are being currently tested for metastatic triple negatives and BRCA1 carriers in clinical trials in Great Britain and at Harvard but to hear an oncologist say that 'cisplatin is not used' is far from the truth... Christina

Hi, Taysia and Cookie.

First of all, good luck with your lumpectomy tomorrow, Cookie (mine is on Feb. 6th).  Please let us know how it went.

I think you are right to assume that, Cookie.  When I asked a major researcher/surgeon's opinion at a teaching cancer center whether I should have carboplatin instead of taxotere (it is a second generation drug that is supposed to cause less trouble with neuropathy but in a study that compared the two: Taxol and taxotere, both of them were equivalent) if I test positive for BRCA1 mutation (I knew of the clinical trials that were specifically targetting carboplatin for BRCA carriers for metastatic bc), he told me that the efficacy of carboplatin is still to be determined for metastatic cancer, and since I was responding so well to the first line of defence, there was no need for the switch (I ended testing negative for BRCA).  "If we find it to be effective for the advanced stage, we would move it down to early bc", he said.

The article's title I cited is "Triple negative tumours: a critical review" by J S Reis-Filho and A N J Tutt.  Since it is published by Blackwell is was not free but I was able to get a free PDF file through my institution and I'll be happy to e-mail it to you if you don't have access to it.

MD Anderson is considered to be on the cutting-edge of research so I think probing the oncologist a little more won't hurt.  Again, a lot is going on with triple negative and metastatic research but early breast cancer is not as much on the horizon yet.  However, that doesn't mean that we should not ask for any protocol that we want and in some cases, like Sadie's and Twink's, we have seen that it WAS the second line of effective defence for them.  --Christina 

What a wonderful story, Cookie. ( I e-mailed you the article).



I also wanted to add one more dimension to how a decision for a protocol is reached. Some oncologists have to demonstrate medical necessity for not using a particular chemo drug or to have another drug added because otherwise the insurance will not cover and pay for it...On the other hand, we have all read stories in this forum of doctors who were willing to go the extra mile for their patients even if the clinical trial data was not available yet. Just because we don't have concrete evidence based on phase II or III trials, that doesn't mean we shouldn't be asking for what makes sense to us or what we believe in. Afterall, it is our life. --Christina

Sadie,

That's useful information to know about diet and pet scan and not just for you.  I'm curious whether they did let you have it.  No matter though, I hope you will get an A+.

Hi, Sadie.



Glad to hear that you had your tests. I'm sure everything will be perfect. As for me, I'm on an emotional roller coaster. Some days I feel certain for my decision to go with lumpectomy, other days I come across a reading and doubt myself, but I'm still leaning towards my original decision. Of course I can always blame Taxotere that forced me into amenorrhea with the wonderful side-effects of hot flushes and mood swings:-). Well, soon enough my dilemma will be a non-issue and then I'd have to contain myself till I find out about the margins in the full-pathology report... When did you remove your port, Sadie? Was it your choice or the oncologist's? Thank you in advance. Fondly, Christina

Hi, Cookie.

That's wonderful news that you had no lymph node involvement and that you got clear margins.  I'm sorry to hear that you didn't sleep last night.  I thought they are supposed to give you some pain medication so that you can get through the night.  Don't hesitate to ask for some or for more effective ones.  Sleep is very important to recovery everybody says.  Did they give you any exercises to do to regain full motion of your arm?  Good luck with your doctor tomorrow.  I'm hoping they will give you some time to heal before they start the chemo so maybe you'll be able to go to AZ, but as you said, your health is the most important thing.  Best, Christina 

Hi, Poteet.



Thanks for the information. I stopped the Repliva because it was causing constipation and before that I was not having any trouble but my iron level dropped today before my last treatment (hurray!) to 29.6 for the first time. Did you have any side-effects with your dosage? I'd like to minimize the iron deficiency before my upcoming surgery if possible but I don't want to have the side-effect that I had (and supposedly repliva was far superior than any other anemia drug in terms of side-effects...).

Best, Christina.