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New Member & metronomic question

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cfworley5 View Drop Down
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Joined: Apr 23 2018
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    Posted: Apr 23 2018 at 3:37pm
Hello All,
I'm a new member and a 54yo RN who was diagnosed w/stage IIB (grade 3) TNBC (infiltrating ductal) on 12/1/17.    Genetic testing revealed only a CHEK2 mutation, no others.
My husband is an MD oral surgeon who immediately started drinking from the internet firehose after diagnosis...we found Dr. Moss' site (cancerdecisions.com)-- for those of you who haven't looked, please consider investing in his breast cancer report, it is worth 10 times the cost. He's been building and updating his reports (not only breast ca but an exhaustive list of others) for 40 years and they are packed full of literature references; he critically evaluates CAM (complementary/alternative medicine) and conventional (NCI/NCCN) approaches with the same zeal.
His report led us to further reading that CONVINCED us of the benefit of a ketogenic diet (ready Miriam Kalamian's book, Keto for Cancer), extended overnight fasting, 24-36 water-only Fast around chemo infusion days, and a long list of supplements. 
We also encourage everyone to read Travis Cristofferson's book, Tripping Over The Truth.
Dr. Moss' report also convinced us to persue chemosensitivity testing through Dr. Nagourney's lab in Long Beach (nagourneycancerinstitute.com)
, which showed particular sensitivity to carboplatin and taxol.  Since December we've been very concerned about the long-term risks of all chemo agents, adriamycin in particular; but we were unable (a few months ago) to find any reputable clinicians who offered a lower-dose metronomic approach (as opposed to MTD/dose-dense).
While my local hem-onc initially recommend AC first (4 cycles each 2 wks apart) followed by 12 wks of taxol, the chemosensitivity results persuaded him to flip the schedule and to start with the taxol (as well as adding the carboplatin).  *Side note*--has anyone else wondered why so many oncologists believe in a weekly/metronomic schedule for Taxol but not for the other agents?  My carboplatin was infused every 3 wks--on same day as the 1st, 4th, 7th, and 10th taxol infusion days.
Anyway.... I'm on the latter side of a 4 week "Break", after my 12th taxol infusion on 4/3/18.  I'm scheduled to start an 8 week (4 cycles q2wk) course of adriamycin & cytoxan on May 1st.
Thanks to some new contacts my husband (mac) was able to find 3 second opinion options; we had phone consults with them earlier this month --the first two were Dr. Mark Rosenberg (amtcare.com) in Boca Raton and Dr. Nick Chen (www.seattleintegrativecancercenter.com) in Seattle.  Both of these docs encourage (and administer) metronomic chemotx as opposed to MTD/conventional, though they differ in dosage strength and number of weekly infusions.  Dr. Chen actually recommended using Epirubicin instead of doxorubicin (adriamycin). 
I was impressed with both, but a bit more with Dr. Chen.
We flew to Baton Rouge last week for a 2nd opinion with a surgical oncologist who we really liked-- he used his in-office ultrasound to examine me and saw significant shrinkage of both the breast tumors and the axillary nodes; he suggested we stay with the MCD/dose-dense plan (though he finds the anti-angiogenesis and immune-supportive aspect of metronomic chemo very appealing)-- since I was able to tolerate the 12wks of taxol/CP so well (praise God), he believes I should do as well with the AC.

But it still scares us.
Understandably we are VERY drawn to the appeal of less intense side effects, lower long-term risk of new malignancies (of different cell origin), as well as to the anti-angiogenic effects that metronomic chemotx has been shown to offer.  We've learned that there are some very promising publications out there showing the benefit of lower dose metronomic chemotx, but almost all (not quite all) of it is in the stage 4/metastatic setting, and not with folks like me who are newly diagnosed and in the neoadjuvant stage.
From what we have read it seems safe to state that patients with early stage TNBC who achieve pCR after neoadj chemotx have excellent survival while those who have residual disease are at a higher risk for recurrence. One source we read states that every clinical trial examining distant recurrence–free survival as a function of pathologic response to neoadjuvant chemotherapy has observed that individuals who achieve pCR have a greater than 90% rate of distant recurrence–free survival.
Not surprisingly, this is the group we want to join! :-)
​We want SO much to reach a level of assurance/confidence that metronomic chemo will enable us to reach a pCR in this neoadj period! 
Perhaps we don't even have to know that MC is more likely than MTD conventional chemo to help us reach that goal.  We would settle for equivalence in efficacy, given all the advantages of Metronomic--- but we just don't know. 
We feel like we have to make a decision in the next 48 hrs.
Has anyone out there used metronomic/weekly lower dose chemotx in their neoadjuvant/pre-surgery period?
So sorry for this very long first-time post!
Grace and Peace to you all,
-Candice
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Warriorkat View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 5:11pm
Hi Candace,
I was diagnosed 1/4/18 also stage 2B. My medonc is at a teaching hospital so not as flexible with protocols as I had hoped. I did the traditional AC in 4 rounds and now will be on round 4 of 12 of Taxol tomorrow. Because of the success so far with decreasing cyst size on US and significant quality changes on palpation as well as my teetering WBC we are not adding in Carboplatin.

I’m working with a nutritionist/functional medicine practitioner who is also a licensed acupuncturist/TCM herbalist) who looks much more closely at my blood work and has me on supplements, herbs and different foods to get me through chemo. He has trained with an integrative oncologist and is working now with a medonc who does use different dosing schedules (I didn’t consult though because it’s all out of pocket). I’d just want to have outcome data with similar diagnoses for the metronomic approach before going that route. If the data supports it then go for it.

That said, I managed through AC with few major effects. After round 1 which I did by the book with Zofran and 12 mg dexamethasone - I managed rounds 2-4 with no
nausea (so no Zofran) and a small dose dexamethasone as I was drinking licorice tea with potentiates the steroids. I did lose my appetite and had heartburn and slow digestion and several days of significant fatigue after the steroids wore off each cycle but I got through it. I had some SOB and heart flutters as well. My WBC and RBC counts dropped. My RBC is recovering slightly but the Taxol seems to be pushing my WBC down further.

It sounds like you are way ahead of the game with several second opinions and have much more info than many. I continue to fast 24 hours prechemo (though take fluids including teas,water, and miso or bone broth). With the AC I needed to eat soon after the infusion began but with Taxol can continue the fast several hours post infusion. I’m otherwise on a mostly plant based diet eliminating wheat and most dairy- though allow myself bread and cheese here and there just because it gets me through not having much of an appetite. Once chemo is done it will be easier to be stricter with my diet choices though I’m off sugar, wine, and coffee.

I did not take Tumeric with the Cyclophosphamide as one study indicated it could compromise the effectiveness (though2 other studies disagreed). I’m on it now though with Taxol as it does seem to boost the apoptosis effect.

Just do your homework- which it sounds like you have- and then go with your gut. We all have to make our own decisions as hard as it can be and trust ourselves. Best of luck on your journey.
Gratefully,
Kat
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 5:40pm
90%??? Shedang, I'll take that!
I was one of the lucky few that got a PCR this time, unfortunately it's not the norm, do they say 10%? They told me something like that. The bummer is, there's no way, no test, that accurately tells you that you've achieved it or not - You only know when you get your surgical pathology. My last scan showed 20% of my original tumor was still there. I tolerated AC and Taxo! Well 9 years ago, but this time I got very sick on Taxol and Carboplatin. I was just too sick to do more chemo at that point. My MD Anderson Dr wanted me to do a lot more chemo, my local Dr said I was done, and that I might already have PCR, that it may be scar tissue and the tumor bed showing on the scan. I did not believe it for a minute, but opted to have a mastectomy and not do more chemo. Thank God I did, but it all feels like a crap shoot when you're in the thick of it. I worry that the way we talk about the PCR these days, it sets women up for devastating disappointment and massive stress and anxiety when it's not achieved. And it's like 80-90% of women in our position that are dealing with it.
FWIW, I was planning on doing Xeloda for 6 months after surgery, if I'd not gotten the full response.
Way to go on seeking all those opinions!I got 2nd opinions both times. At the end of all the opinions, you just have to go with your gut. Do that, then do your best to let it go - don't second guess and no regrets. You're doing great so far with your decisions, Trust your decisions going forward as well.
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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