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Anyone have ACT Chemo Treatment?

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    Posted: Sep 03 2009 at 7:16am
Is there anyone here that has gone through ACT Chemo treatment?  My original oncologist wanted me to do 4 treatments of CT Chemo but when I got my second opinion, the new oncologist strongly recommended ACT Chemo and more sessions-- 4 of AC and then 4 of T.
 
Has anyone gone through the same treatment that can share some insight?  I'm choosing to do it every two weeks rather than every 3 weeks (Dr. recommended that also).  I realize everyone is different, but can anyone share their story with me, either in a post or private message?
 
I'll be 32 when I receive the treatment, healthy otherwise with the exception of BC and migraines.  I am stage 2a and had a lumpectomy.  The 2nd oncologist is also strongly recommending that after chemo is done, that I go back to have another surgery to make the margins clear.  Prior to that I'm taking a genetic test to see if I have the genes BRCA1 and BRCA2.
 
I have to admit, I'm still somewhat of a newbie.  I just got diagnosed July 31st.  If I have either gene mentioned above, that gives me higher risk for ovarian cancer and breast cancer reaccurance, correct?  If I choose to have a double mesectomy after chemo (and get implants) does that rid my chances of having breast cancer again?  The cancer never metasicized, no lymph node involvement.  Or is there still opportunity to develop something after you have implants?
 
PS--If I have the gene, I'm planning on removing my ovaries once I am clear and had a baby through IVF.  I'm harvesting my eggs to freeze embryos in the coming weeks.
 
Any insights you can share would be great.  Wink
 
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You'll find that a lot of us here had the exact same chemo, dense dose AC x4, T x4 - every 2 weeks on the whole thing.  You can ask us ANYTHING and we'll be happy to answer the best we can.  Deep breaths, one thing at a time.  Everyone kept telling me waiting was the hardest part - and it is!  It sounds like you are doing all the right things, asking all the right questions. 
 
Are you married?
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!
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I am married.  My first chemo starts on our 2nd wedding anniversary.  We've been together for 7 years total.  My husband is handling my BC worse than me.  He truly loves me though.
 
Because chemo sessions are closer together, how bad does the body get hit compared to them being spaced 3 weeks apart?  Did you feel that once you starting feeling better another chemo session started up, or did you have times that you felt ok in between sessions?  My attitude towards BC is whatever it takes I'll do it. 
 
I'm getting my hair cut two weeks from today and having a "hip hat" made in Tampa using my real hair.  I'm getting a wig that day as well.
 
The only reason why I'm waiting to start chemo (last week in Sept) is because of the fertility treatment.  I have to harvest those eggs.  My husband and I were supposed to start a family next year(the regular way).  Obviously that will have to wait, but as long as my uterus is ok after chemo, I should be able to have a baby with the embryos.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 8:44am
Girlpower,

Do ask your doc if they can do the Taxol weekly over 12 weeks instead of biweekly over 8 weeks. The 4 cycles of AC would still be biweekly. There is research that indicates that to be 3-4% better in terms of overall and disease free survival.

Prophylactic removal of both breasts and ovaries substantially reduce your chances of getting breast and ovarian cancer. However, there is still a 2-3% chance of getting breast cancer in the very little tissue left.

Love,

Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Is Taxol the same as Taxotere?  Taxotere is what I would be getting (generic name Docetaxel).
 
Thank you all for your info.  Pink%20Ribbon
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 9:58am
Taxotere is Taxol's cousin. They are both in the Taxane family and work in very similar ways.

In a head to head study weekly Taxol had the best results, followed by triweekly Taxotere followed by triweekly Taxol followed by weekly Taxotere. The differences between DFS rates were like 1-3% between the 4 regimens.

Do ask the doc why she chose 2 weekly Taxotere for you over weekly Taxol. Believe it or not, often times it is just convenient for the doc and/or patient to get chemo 4 times than 12 times. If you can get 12 weekly dosage, go for it.

PS: Corrected errors in my old post to prevent future readers from being misled.





Edited by unklezwifeonty - Feb 02 2010 at 9:15pm
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 10:06am
Originally posted by girlpower731 girlpower731 wrote:

Is there anyone here that has gone through ACT Chemo treatment?  My original oncologist wanted me to do 4 treatments of CT Chemo but when I got my second opinion, the new oncologist strongly recommended ACT Chemo and more sessions-- 4 of AC and then 4 of T.......


The jury is still out on whether Adriamycin (A) helps for TNBC and if so, how much and whether it s worth the risk of heart damage and other side effects. Ask the original oncologist (or both of them!) why they recommended the treatment plan they recommended. The answer would educate us all. Some doctors give vague answers some times like "research has shown" or "it is the best treatment for you". Ask for copies of research papers to back their claims.

Here is one meta-analysis study that indicates that Adriamycin may be ineffective for HER2 negative BC. There are other meta-analysis studies too.

http://www.cancer.gov/clinicaltrials/results/HER2-anthracycline0108

And recently a Phase III Clinical Trial (NSABP 46) was started for HER2 negative BC which will compare TAC vs. TC vs. TC and Avastin. They usually don't use regimens in Phase III clinical trials that they have reasons to believe would reduce your chances, so I suspect TC is almost as good as TAC. This trial is:

http://clinicaltrials.gov/ct2/show/NCT00887536

Edited by unklezwifeonty - Sep 03 2009 at 10:25am
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Freaked out now Girlpower?  I would recommend you see two oncologists and get two opinions - second opinions are important!  Take a tape recorder and record your appointments - then play them back later and make notes.  Your decision will come to you. 
 
Here's to hoping you come back negative on the mutation, then the ovaries can just stay put and you won't have to go thru the additional surgeries.  Odds are you will be negative, although it's still good to do the harvest, as this put me into full blown menapause.  You might get your periods back since you are younger (I was 45), but better safe!
 
I'm very glad I did the every 2 weeks and got it over with.  My onc said the 12 week sked didn't offer me any big  difference (1% not being big), the only reason to do it would be if I couldn't tolerate the higher every other week dose.  It wasn't fun, but I made it and got it all behind me that much faster.  The sooner I finished the better for my teenage son that suffers from a chronic illness.  It was completely "doable" as you will hear everyone say!  Re
 
On the A/C I felt bad for a week at a time - so I felt ok a week at a time.  Taxol I was able to function better, with a shorter down time.   To really feel better you have to get it behind you - so that's another plus to every two weeks instead of 3 - it's over quicker. 
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!
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Believe it or not, I'm actually not freaked out.  I'm ok with everything.  I went to this local wig store and tried on some more wigs.  The thing about wigs, they never look as good on you as they do the model (or at least that's how I feel about myself right now).  But then again, I still have a full head of hair so it's not fitting me right.  Two more weeks and the hair is getting chopped!!!
 
Thanks unklezwifeonty for the links.  I'll print those out tonight, read them and bring them to my oncologist appointment tomorrow.
 
So you think 12 weekly doses of taxol with biweekly of AC (4 total) will be ok for a body to handle?  Was this what you did?
 
Kellyless--the reason for the frozen embryos is because aside from this whole BC thing and having chemo, my mom's side have menapause prior to 40yr old.  1% of women in the US hit menapause prior to 40, that being my family included.  My mom was 37, my aunt 36 and my grandmother 38.  So I needed to do this to keep my sanity.  If I don't get my period after the treatment (oncologist said 25% of premenapausal women do not within 2 years of ending chemo treatmentand that's usually a cutoff point), I'll still be able to use the embryos in my body with the help of the fertility doctor.  That's something I never new prior to being in this situation. 
 
On a slightly different topic, has anyone that has menapause ever use bio-identical hormones?  It was on the Dr. Phil Show, his wife uses it. 
 
So do you all think it's possible to work flex hours during all this, I'm thinking a couple months into the treatment (still in chemo though)?  I'm not talking 40 hours a week, it would definitely have to have flexible hours in case I'm not well.  What are your thoughts?
 
 
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Originally posted by girlpower731 girlpower731 wrote:

........So do you all think it's possible to work flex hours during all this, I'm thinking a couple months into the treatment (still in chemo though)?  I'm not talking 40 hours a week, it would definitely have to have flexible hours in case I'm not well.  What are your thoughts?


I am also considering flex hours from home. It should be possible 2-4 days per cycle depending on how I handle it and it would probably help with the recovery by diverting the mind somewhere else. I'd recommend that you work from home as opposed to going to work. The natural immunity weakens hugely due to the depletion of white blood cells (wbc), even after they give you neulasta shots to make the wbc count go up. Do still to watch out for any symptoms.

I think you have the right flexible attitude and acceptance of your disease to manage it fine.

Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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I just saw my oncologist and she is recommending the Adreamycin/Cytoxan every 3 weeks 4 times, then taxol every 3 weeks 4 times...I also will have a muga scan and PET scan. I am having a port put in next Friday. We talked about all options and well, I guess this is the best one. My tumor was originally thought to be 2cm...it's actually 4.5cm x 4 cm. I guess 2 lymph nodes are involved. We won't even talk surgery until I have chemo.
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All the docs I've seen say NO WAY to any hormones, bioidentical or not.  It's not worth the risk to take anything hormonal, not even black cohosh (an herbal remedy that has estrogen).  Oprah has caught a lot of flak for pushing the bioidenticals - very controversial. 
 
I am lucky that I work from home - usually full time.  I would take off 4 days for every A/C - 3 for Taxol - or so, not the same very time.  The anemia made me really tired, I didn't have a lot of stamina.  Working from home I didn't have to worry about germs either, big bonus. 
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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 5:31pm
Dear girlpower,
 
Yes you can take biodentical hormones, but you have to find a doctor who is willing to work with you after a dx of bc. My Lori has been on BHRT since early June and as she said finally has her life back after bc. She researched thye BHRT for months before looking for a doctor/antiaging clinic.
 
Sunris just posted a thread on that yesterday to which no one replied. There have been many discussions on BHRT, and it always comes down to the fact that the oncs say no! Well, they need to become more educated in the antiaging field of medicine.
 
As Lori said, it is not her responsibility to educate them, it is theirs, as more people, both women and men are looking for quality of life without taking drugs which only compound the problems. Lori was willing to sign a waiver with her doctor to get the biodenticals, but it was not necessary.
 
Donna...user name sibu is also on them and Dawn...user name Sunris will be taking them also. Lori finished all her treatments in January of 2008, and even though she changed her diet drastically, and continued her exercise routine faithfully, was still feeling as though she did not have the quality of life that she wanted...and deserved. Her husband is also taking BHRT.
 
I doubt that you could take the BHRT while on chemo, but when you are finished with treatments, (or even now), you should definitely research this field of medicine. If you want more info on the BHRT, just send me a private message.
 
There have been many threads discussing BHRT, and you can do a search to read them.
Hugs,
Nancy
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DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 5:33pm
Originally posted by Frankenboob Frankenboob wrote:

I just saw my oncologist and she is recommending the Adreamycin/Cytoxan every 3 weeks 4 times, then taxol every 3 weeks 4 times........


Frankie,

Curious why your oncologist did not recommend the:

1. AC every 2 weeks 4 times and then T every 1 week 12 times?

2. AC every 2 weeks 4 times, then T every 2 weeks 4 times.

Both these regimens are known to be more effective and tolerated better than the one your oncologist recommended. Did you talk about these 2 options? What about Taxotere and C every 3 weeks (no Adriamycin at all)?

Love


Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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I'd definitely ask your employer if you can work flex hours.  Do you have the option to work from home?  I had a bilateral mastectomy on 6/30 and started chemo on 7/23 (T/C every 3 weeks X 4).  During all this, I've been able to work from home.  I have online access to my work computer (Logmein.com).  It's been great because I haven't had to go into the office and be around a lot of people and I can work on my schedule based upon how I feel.  There's no rush to get up in the morning, get dressed and drive to work, etc.  I work with all women and they have been very supportive and protective of me.  I hope your employer can give you the flexibility you need.  Good luck with your treatments.

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

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I had 4 DD AC every two weeks and was supposed to have the 4 DD Taxol every two weeks, but after my first taxol I developed neuropathy pretty bad and onc was very alarmed (fingertips and bottoms of feet).  She then switched me to Taxotere for the last three rounds every three weeks as it is supposed to be more gentle on the neuropathy.  She was right.  I have my last taxotere on the 9th then on to rads 4 wks later.  I wish you the best of everything.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 4:00pm
Today I visited an oncologist who was very nice and very clear in recommending:

4 Biweekly Cycles of AC => 12 Weekly Cycles of T

I was already sold on this regimen for ACT.

As far as Adriamycin is concerned, she indicated that the indirectly collected data that Adriamycin does not work for TNBC has not convinced many oncologists. Apparently, most oncologists are not willing to treat TNBC using just TC, which IS one of the regimens in the standard of care and oncologists can not be sued for using that regimen.


Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 4:21pm
While I appreciate your respect for your oncologist, and what you wish to believe, please also have that same respect for those of us whose oncologists do not feel as your oncologist .  Thousands of us have recently and are continuing to undergo AC and 4 doses of either Taxol or Taxotere and have confidence in our oncologists and our futures.  There are many papers stating AC is a first line of defense for TNBC.  INHO, you are doing a grave injustice to all the women who have had the ACT regime, as well as the TC regime.  While you may certainly have your opinion, please do remember that it is only your opinion based on what you have been told.  It is not written in concrete, and if it was, it would be the only treatment used by all oncologists, which it most certainly is not.
 
Linda


Edited by LRM216 - Sep 04 2009 at 4:23pm
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 5:05pm
Dear Linda,

I agree with you that the treatment recommended by my onco today is not written in concrete. I was just sharing what she told me was the best treatment for me from the standard of care treatments available today. She also strongly suggested that I seriously consider trial ECOG 5103 which has 2 arms that add Avastin to ACT.

I also agree with you that this is not the only treatment available to oncologists. It would be tragic if it were.

I am not a medically trained person. From the little that I have read on the internet and heard from doctors, I believe that for TNBC, the different regimens that people are getting, e.g. TAC, TC, CMF, TFAC, CEF, Platinums, +/- Avastin, etc. as well as the different schedule variations of ACT are all viable regimens out of which the oncologist selects the ones for the particular patient, their exact disease, stage, node status, their age, menopausal state, heart and other medical conditions, convenience, comfort factor, etc.

Maybe I should have added all these caveats to my email. I am sorry I didn't and I am also sorry that I came across as undermining confidence in your oncologists.

Love

Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 5:15pm
Thank you, and I wish you all the best with your treatment and hope your journey is smooth and uneventful.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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