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Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #1 

Had the 3-month CT scan on Tuesday, and today (Thursday), went for my usual Avastin infusion.  Saw the PA, and found out that the scan showed "Large left axillary lymph node" increased from 6mm to 1.2 cm, and "a new upper high left axillary lymph node is identified, currently measuring 1.4 X 0.7 cm, deep to the upper left pectoralis minor muscle."

Also, in spite of all the radiation to the neck, the "1.1 X 0.9 cm left posterior cervical triangle lymph node appears marginally smaller 1.0 X 0.7 cm, and the prior subtle millimeter diameter carotid sheath lymph node appears marginally smaller 0.5 cm diameter."
 
Good news is that these are still relatively small, and that "multiple smaller subcentimeter posterior cervical triangle lymph nodes have resolved".  Extra good news is that there is no evidence of disease anywhere else! Smile 
 
So, today's treatment was cancelled.  The PA was uncomfortable discussing future treatments, as she felt (and I agree) that that is for the Oncologist to review with me. She ordered a PET scan for tomorrow morning, and then I get to see the Oncologist next Wednesday. 
 
However, she did suggest (and gave me the paperwork for), a clinical trial - ACORN  ALSSMBC0804, which is IXEMPRA plus SPRYCEL.  Anyone know anything about this trial or this combination of drugs? 
 
(I asked her about Havalen, and she said that that really was a discussion for me to have with the Onc. next week.)
 
So, another question: What is (your) opinion on the most aggressive way to treat this new situation?  I'd rather give it heck now, than do dribs and drabs, not achieving anything really, except side effects...
 
Thanks, as always, for all feedback.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Primel

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La Deesse
Registered: 09/27/07
Posts: 324
Reply with quote  #2 
Hi (((((((((((Deb))))))))))))

Hopefully you'll get some more info from the forum by next week.

Thinking of you and sending hugs

Catherine
edge

Chief of Research
Registered: 10/28/07
Posts: 1,089
Reply with quote  #3 

Debris:


Glad to assist but I can't hazard  an opinion on aggressive interventions without a detailed clinical (treatment)  history to date,, and whatever pathological information (besides the fact  of ER/PR/HER2 negativity) you may have (any biomarkers).

 

However I can address your question of the ixabepilone (Ixempra) + dasatinib (Sprycel) clinical trial that was suggested.  At this time I would find this trial of insufficient promise to recommend in advanced breast  cancer. 

 

Why?  Although we have some theoretical potential of a synergy  between this mitotic inhibitor epothilone and this Src inhibitor, there is no human clinical data to support benefit in advanced BC.  Although there  was a Phase I trial of this particular regimen conducted by Sandra Swain's team at Washington Hospital Center and reported at ASCO 2010, in 11 patients with advanced solid tumors (four of  these with breast  cancer), there were only two objective responses (complete or partial responses), but these were in head and neck cancer (HNC) and pancreatic cancer and both were partial responses.  There were no objective responses in any breast cancer patient, and although there were 8 patients who are reported as achieving stable disease, this was in fact on careful examination only for a median of 95 days, with a range of 49 - 126 days, and this does not meet the protocol definition of stable disease, which must be 6 months or greater, and even if there were stable disease of requisite duration, a clinical trial with, for breast cancer, no objective - complete or partial - responses whatever is to be considered a failure, and certainly inadequate to support a recommendation. (Trials being conducted at one's institution are often suggested, as they need subjects, but although aiding in clinical trial research is commendable, my business is what matters for the patient, and what on the odds are the most promising avenues of intervention to maximize outcome, on or off-trial).



Constantine Kaniklidis

Breast Cancer  Watch

edge@evidencewatch.com

nosurrender

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Registered: 09/07/07
Posts: 7,408
Reply with quote  #4 
Hi Deb,
I am glad to see you. Also hearing that you are NED everywhere else is awesome news. I wonder if you could have those lymph nodes removed? Definitely wait until you speak with your onc. I agree with giving it heck now!
love to you
g


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Limner

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Pathfinder Angel
Registered: 10/20/08
Posts: 716
Reply with quote  #5 
"my business is what matters for the patient".  Edge, You have such heart, wit, science and soul.  I am so grateful for what you have contributed to our well-being, and how you have informed our critical decisions. 
 
Debris, great news!  Be gentle with yourself for the L o n g H a u l.
 
Love, Mary

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #6 
Edge, thank you so much for your response. Your comprehensive answer supports my initial feeling, though I had no rational explanation why I felt that way.

A really dumb question. What are biomarkers and how do I find out that data to give to you?

Thus far I have only had Taxol plus Avastin, stopping the Taxol in January due to neuropathy. My Ca27.29 went from 866 last June to 33 in March.

The new nodes in the left arm appeared since the scans in January.

My issues seem so insignificant compared to those of others with this disease, but I'm very grateful for any and all advice.

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
edge

Chief of Research
Registered: 10/28/07
Posts: 1,089
Reply with quote  #7 

Debris:


Not dumb at all:

 

Understanding Biomarkers

A  biomarker is a biological indicator, that is, a measurable substance (frequently a protein) used as an indicator of a biological state or condition. 

 

Simplifying greatly there are four categories of  biomarkers:

  1. detection biomarkers, like prostate-specific antigen (PSA) used to detect prostate cancer or CA 125 (ovarian cancer), or the "tumor biomarkers" CA 15-3 and CA 27-29 for early BC detection;
  2. diagnostic biomarkers, like BRCA1 and BRCA2 in breast cancer;
  3. prognostic biomarkers like EGFR and CK5/6 (which together allow the determination of whether a triple negative  tumor is basal or non-basal), VEGF, p53, the molecular biomarker E-Cadherin, the proliferation biomarkers KI-67 and mitosis (part of tumor grade), among others, and
  4. predictive biomarkers (of response to different therapies and agents) like the biological biomarkers ER, PR, and HER2 receptor status, p63/p73, and circulating tumor cells (CTCs); and note that in certain circumstances CA 15-3 and CA 27-29 (27.29) are also predictive (of response to therapy). 

Biomarkers are not always or consistently analyzed, but more often some have been analyzed, but not necessarily reported back to the patient. If conducted, they are generally found in the pathology report(s) which should be obtained by all patients (some oncologists also order genomic tests to ascertain certain molecular level biomarkers, but this is not common).

 

Some Commentary on Going Forward

It appears  if I am understanding this correctly that your clinical treatment history consists of  only paclitaxel (Taxol) + bevacizumab (Avastin), known widely as the (Kathy Miller) E2100 regimen, to which you appear to have been quite significantly responsive as per the falling of your predictive biomarker, the CA 27-29 levels, although there may have been some recent acquired resistance - likely I think to the taxane, namely Taxol - given modest axillary node  growth.

 

Without knowing the biomarker information, I would hazard here the following commentary:

  1. for reasons I have often and widely argued, I would not discontinue the bevacizumab (Avastin), but if viable, continue it, a strategy known as BBP (bevacizumab beyond progression);
  2. you are naive to both anthracyclines, and to third generation chemotherapy  agents, namely capecitabine (Xeloda), gemcitabine (Gemzar) and vinorelbine (Navelbine) so switching from the taxane to either (a) an anthracycline-based regimen, or (b) to a 3rd generation regimen, represents two attractive  options;
  3. a strong case could be made for capecitabine (Xeloda) given the predilection of  TNBC disease to find sanctuary in the brain: there is compelling data to  suggest  that Xeloda can cross the blood-brain barrier (BBB) and hence has the potential for being protective against CNS disease development, and is also well-known to be effective in visceral disease;

I would reserve eribulin (Halaven) and ixabepilone (Ixempra) for  later-line therapy should it be needed.  



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

edge

Chief of Research
Registered: 10/28/07
Posts: 1,089
Reply with quote  #8 

Mary:


Thanks so  much for the kind appreciation!

 

Sorry I haven't responded sooner but I've been busy chopping wood, clearing bramble, pushing small boulders around and whatnot, and chasing some darn grizzlies and black bears off the property, and well heck, I'm exhausted! Only just got a chance to get out of my plaid shirt and lumberjack boots and wash up in a stream, sudsing up with Irish Spring soap-on-rope, then shaving using a hunting knife, and slapping on some musk, mulch and moss aftershave.

 

But life for us  woodsmen-researchers was never easy.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #9 
Edge, so glad you have that sense of humor, as well as the great scientific expertise!

Well, I went to the Onc. Armed with questions, etc. He answered most of them just by reviewing my scans with me and discussing options - many the same as you suggested.

The oncologist is brisk, straight talking person, who nonetheless has a very human side. He is more than happy to go for second opinion if I want, and in this instance, said he'd go whichever way we wanted.

Anyway, while he was out of the room, calling the radiologist to confirm no radiation recommend for my current status, hubby and I talked - again - about what to do. And in the end, we asked ourselves if we trust the Dr to do the right thing for me?

When he returned, we asked him what his true, final, opinion/advice would be, and he said without hesitation that if it was him, he'd do the trial. I asked him what the endpoint was, and he said, for him, to get me the longest progression-free period with the best QoL he could.

So, I hope you can/will still give me support and advice, Edge, even though in the end I agreed to do the trial. We start this Wednesday, weekly Ixempra for 3 weeks, one week off, and daily Sprycel. I feel good about going forward, but somewhat anxious about managing the SEs. I'd very much like to post how things proceed, and hope for the continued hints, help and support that is the hallmark of this site.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
edge

Chief of Research
Registered: 10/28/07
Posts: 1,089
Reply with quote  #10 

Debris:


Absolutely!  Agreement is definitely not a prerequisite to support, and naturally the decisions are ultimately yours as they should be. Not everyone would agree with my own predilection for up-front, preemptive and aggressive therapy - and as you are not confirmably metastatic, I would be going for a cure, therapy directed at  overall survival (OS) with curative intent, not just the prolongation of progression free survival (PFS)), where I find the off-trial practice setting more flexible, but that's part and parcel of my unique therapeutic posture - nor in my many critical assessments; there is an extraordinarily wide spectrum of reasonable and well-founded opinions on optimal treatment. 

 

You and other husband sound like you have a strong and intuitive sense of trust and respect for your oncologist, and certainly ixabepilone (Ixempra) even as monotherapy is a well attested option in the arsenal of effective breast cancer regimens, so I wish you every success, and am here for any assistance I can render, anytime without qualification, as is the entire will and force of the No Surrender community!



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #11 
Edge, thank you so much for your support, and of course, everyone at No Surrender.

Today was my first infusion (and first Sprycel), so nothing to report other than the usual premed-induced sleepiness. Fingers crossed for all sorts of good outcomes.

You are all so appreciated!

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #12 
Hello, All.  Have not been able to post lately.  First getting ready for visit from sister & BiL, then enjoying their visit.  Had to say goodbye to them today for their return to South Africa, so feeling kinda sad.

Had some issues at start of Cycle 2, with low WBC and diarrhea.  Had a week's break, with Neupogen injections and then restarted last Thursday with a reduced Sprycel dosage (70 mg instead of 100mg).  Now that bowel and nausea symptoms are somewhat abated, biggest issue appears to be the neuropathy.  Number 2 infusion of Ixempra, for cycle two, is tomorrow.  Hope WBC is good, and that all goes well.

Now I'm going to try catch up on all that has been posted on this Forum, but in case I don't "see" everyone, wishing you all, the very best.

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
nosurrender

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Moderator
Registered: 09/07/07
Posts: 7,408
Reply with quote  #13 
Dear Deb,
I am so glad you had a nice visit!
I wonder if you can take Neurontin while on your current tx? That may help...
sending you lots of love,
g


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Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #14 
Hello, all.  Just a quick update.

I've been battling nausea, and finally was given the Sancuso 7-day patch to wear.  It seems to be helping, though I do still get waves of nausea from time to time.  I've been given the generic of Elavil to take at night for the neuropathy - not sure if it is helping.  I haven't had the severe pain episodes, but I certainly do still have the constant tingling/numbness - and feeling cold.

I've managed to get through two complete cycles now, and tomorrow go for the first scans since starting the trial.  Hopefully I'll get the results before the weekend - and hopefully they're GOOD!

Love to all.

Deborah.


__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
nosurrender

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Moderator
Registered: 09/07/07
Posts: 7,408
Reply with quote  #15 
Deborah, I missed this post and I apologize! How are you doing? Praying all went well!!!!
love,
g


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WE WILL PREVAIL





Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #16 
Hello, all.  Sorry I've been mia for so long.  Feeling quite fatigued, and after a busy day at the office, I just don't have the energy to post - though I do often "visit" via my iPad at night, and keep you all in my prayers.

My scans of early July showed no progression, no change in some tumors and slight reduction in others.  So, while not NED, it is at least labelled "stable" at this stage.  I'm still on the trial for another 2 cycles (at least), and will have scans again end August/early September.

My heros are Mary and Janet!  Whenever I think I'm having a tough time, I think of them and feel I have to try live up to their examples.

God Bless, all.

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Limner

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Pathfinder Angel
Registered: 10/20/08
Posts: 716
Reply with quote  #17 

So Debs - Are you on a treatment?  As if it all isn't bad enough, the tiredness is so limiting/  I listen to and watch food shows~  But I did juice today and made some purple Greek cole slaw since I am not on any other type of treatment!  Thank you for your cherished encouragement - I don't feel like a hero - I feel like I am schlepping through h my life without much purpose - though there are dear moments with family and friends - Enjoy your time off work, what ever gives you pleasure = Love, Mary 


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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

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Posts: 7,408
Reply with quote  #18 
Deb- Stable Mable lives right next door to NED!
xxxooo!


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Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #19 
Hello, friends.

Starting my fourth monthly of this regimen. Now have the nausea mostly under control, just trying to cope with the fatigue and neuropathy. I see an Integrative Dr who, I think, has done great in helping me manage SEs. One of the treatments she advisers is a weekly injection of B12 and Folic Acid. Oncologist's PA questioned the frequency recently. While I waited for a response from the IM Dr, I stopped the injections.

Well, I can certainly attest to the fact that my neuropathy has been getting steadily worse since stopping. Yesterday came the emphatic reply - do NOT stop. I am anxious to restate them on Monday.

In the meantime, something strange going on in my neck (site of recalcitrant nodes). It has been itchy , and sensitive. Small bumps are coming up, and one larger one just sort of below my ear, next to my jawbone. Onc. Says to wait for CT scan at beginning of Sept, when this cycle is done. Don't really know whether to be concerned or not.

On a lighter note, DH and I will be going to UK for "off" week at end of August. Hope the weather is good!

Love to all. It's been hard to get over Mary, and I didn't even know her as well as you all did.

God Bless us, everyone.

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Debris

Contributing Member
Registered: 07/30/10
Posts: 73
Reply with quote  #20 

SO, this regimen didn't turn out to be that great for me, from a progression point of view.  Yesterday was my Ixempra infusion day, but I didn't get any chemo after all -

It appears that there is probable metastasis to the skin in the neck area, as well as "activity" in the nodes in that area.  For this reason, the paticipation in the clinical trial has been put on hold.

The scans that were scheduled for early September were brought forward to next Tuesday, so that a more informed assessment of the current status can be made.  Until that time, I will be off any form of chemo.

We are not "shocked" by this turn of events, as it is not an unexpected course for the TNBC to follow. 

I'm not very "up" on skin mets, so have no idea what to expect, nor what sort of treatment is standard.  I do know it's kinda itchy, sensitive, sometimes sore, and feels like a tight band around my neck.  No breathing problems, though my voice seems to have changed - don't know if that is coincidental or significant.

Will post again when I know where we're going from here.

Have a great weekend, all.

Deborah.


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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
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