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Old 05-02-2012, 03:10 PM   #1
Kathleen09
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ACTH vs TCH chemo - thoughts welcome

Hi everyone,
My sister met with her Oncologist for the first time yesterday to review her pathology report and talk about her chemo treatment plan options. He suggested TCH for her - I would love feedback from those on that regimen...even if it's unpleasant, it's ok don't worry I can take it. She can take it too I promise. She's so amazing and so strong - it's really an inspiration. We just want to know everything we can about both options that's all. I would also love any feedback you have on your feelings of AC-TH vs TCH. Her Dr was wonderful and said it was her choice and that he was comfortable with both of them. I told her I'd come on to this site and ask you all what you thought - she can't wait to hear from you and wanted me to thank you all for your thoughts. So thank you so much on behalf of my sister.
Kathleen
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Old 05-02-2012, 03:22 PM   #2
chekmark
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Re: ACTH vs TCH chemo - thoughts welcome

Kathleen,
What a great sister you are to do the homework for your sister. Support is so important. I can only comment on the TCH cocktail. I found it unpleasant but doable. I worked and only missed 1 day from side effects from chemo. I missed a total of maybe 2 weeks all together and that was due to surgeries. I would have my treatment on thursdays, would feel fine on friday and by saturday would feel pretty crappy thru all of sunday and sometimes on monday. By tuesday I was bouncing back but was a hermit due to my immune system and white blood count. I avoided crowds and didn't have any set back at alls. I work in a doctors office so I kept my office door shut alot and used alot of purel. I think the TCH is standard of care and I think you have normally 6 treatments of that and only 4 of the other. I am told both are comparable. I hope all goes well for her. Someone will chime in I am sure on the other. Good luck and god bless you both. Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 05-02-2012, 07:36 PM   #3
JillaryJill
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Re: ACTH vs TCH chemo - thoughts welcome

Hi Kathleen,
Thank you for being a patient advocate for your sister. She needs you right now. I can ditto Darlene's reply. TCH chemo on Thursdays, worked remotely through the wireless network at the chemo center. Pumped up on steroids, Thursday, the day of treatment and Friday....Saturday & Sunday on the couch watching movies, eating clear broth soups. Monday back to work. Neulasta shot kept my white blood cell counts good, did not miss a treatment. In regards to TCH, ACTH, my onc who is from a large teaching hospital in Chicago and is quite renowned regarding her work with Her2 patients...has adopted TCH as her standard of care. She told me the chemo regimen is less toxic with the same results. There is also some info on the web, statements by Dr. Slamon regarding TCH vs. ACTH. He leans towards the TCH regimen. The smaller community hospital where I sought out my first opinion for treatment suggested the ACTH regimen, but also offered TCH. I was so scared at the time, I did not research it thoroughly but went with my "intuition" and the recommendation of the teaching hospital. I have read a great deal about the 2 regimens since then and it seems TCH is the standard of care. I feel good about my decision. Good luck to your sister! Jill
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 05-03-2012, 05:18 AM   #4
Cheryl D
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Re: ACTH vs TCH chemo - thoughts welcome

G'day there, just thought I'd give you a quick reply.
I too did the TCH route and it was horrible, I could not work, walk or for that much do anything but it was the best for me and many others here in Australia receive the same treatment.
She just needs to be prepared incase it is a horror ride for her as it was me but I hope to goodness she gets the smooth waters and an uneventful journey.
What a great sister you are to have, mine was there for my first round and the fears and tears were taken away with her there, I am sure you shall be the same so goodluck and best wishes to her and cheers to you my dear, what a treasure sisters are.
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Old 05-03-2012, 09:41 AM   #5
teresamd0906
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Re: ACTH vs TCH chemo - thoughts welcome

I did the TCH for 6 treatments then 52 weekly treatments of Herceptin. I had no problem with either of them. Except for losing my hair! The first couple of treatments left me kinda puny feeling and achy but with the last 4 treatments I didn't have any problems at all. I would do it all over again if I had to. Good luck to your sister!
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Old 05-03-2012, 09:52 AM   #6
Kathleen09
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Re: ACTH vs TCH chemo - thoughts welcome

Thank you all so very much. You input has been so helpful and we really appreciate it. Blessings to all of you!
Kathleen
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Old 05-04-2012, 03:49 PM   #7
Deb33
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Re: ACTH vs TCH chemo - thoughts welcome

I had a little of everything - TCH to begin but still had alot of node involvement so followed up with Adriamycin and Xeloda. Honestly I think everyone is different with the side effects they experience. I was diligent with icing my fingernails and toenails during the TCH treatments and never lost a nail. I also worked with a Naturopath and took alot of Onc approved supplements, had B12 shots each week and seemed to live on wheatgrass to keep my bloodcount up. I eventually began to manage side effects with Acupunture. All in all, its doable - a few rough days and lots of good ones. The hair loss sucks so make sure your sister splurges on a wig she likes so she can still feel like she looks ok.
Its easy to get really overwhelmed by the year ahead - try to keep her mind on day to day and remind her that she is blessed to have such effective treatments available. She is much stronger then she thinks.
She'll be added to our prayers.
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11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 05-04-2012, 04:28 PM   #8
chrisy
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Re: ACTH vs TCH chemo - thoughts welcome

I did TCH for 6 cycles (the T was taxol) then maintained on H alone.

I did surprisingly well on TCH, with the proper premeds, I never experienced any nausea or seriously low blood counts. I did have some neuropathy and fatigue, especially towards the end. I guess I'm saying to you and your sister, don't claim any side effects until you actually get them. She might do better than you think.

As for TCH v s ACTH, it is a hot topic of debate among the top researchers, with no lesser figure than Dennis Slamon ( the "father" of herceptin) feeling strongly that most women can get the same befitting e long run from TCH as from ACTH, and most her2+ women can be spared the additional toxicity of adriMycin. So either choice is reasonable.

Your sister is lucky to have you in the ring with her!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 05-05-2012, 12:10 AM   #9
KsGal
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Re: ACTH vs TCH chemo - thoughts welcome

I do think the side effects are different from person to person. I am getting ready for my last TCH treatment in a couple weeks. I think the steroids have given me more side effects than the chemo, honestly.

I have never thrown up or felt nauseous. I had my kids shave my head, and then never lost my hair. It has grown back to a couple inches now..although it is a different texture than before. No nail difficulties. The side effects I DO have are fatigue, some scalp soreness the first few treatments, and sores in my mouth that develop about five days out and last about a week i.e. sores in the corners of my mouth, on my tongue or even in my nose (UGH!). Also just general muscle achiness, but not sure if that is chemo or Neulasta. I work 45 hours a week, and have not missed a day of work yet, but I do take three days off the weeks I get the chemo. At any rate, I found this to be a very doable combination, and understand it to be the regimen of choice. It has worked really well for me (I am stage IV with multiple liver metastases). I only have one tumor left visible on scans, and it is pretty small. I sure hope this works as well for your sister. Lots of love and prayers coming your way.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-05-2012, 02:34 AM   #10
stephib
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Re: ACTH vs TCH chemo - thoughts welcome

I just wanted to chime in that I'm on the AC-TH regimen and have had minimal side effects. I've finished AC and am halfway through Taxol. I'll continue with the Herceptin for the remainder of a year once the Taxol is completed. I am 34 years old and my heart continues to do fine. I'm not entirely sure why my oncologist (who I love) chose AC-TH, but I think because of my age he wanted to give me everything I could handle in the hopes of keeping this cancer gone forever. I'm slightly ER+ PR- and obviously Her2 positive. I had no node involvement and chose to have a double mastectomy. I've been able to continue teaching and though I've had days I feel "yucky", I've never had a day that made me regret the chemo. Good luck to you and your sister; mine has been amazing for me
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Old 05-05-2012, 05:46 PM   #11
Jean
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Re: ACTH vs TCH chemo - thoughts welcome

Kathleen,
What was your sister's stage?
Where there nodes involved?
This is very important.

For the most part early stage patients stage 1
with no node involvement is a good cadidate for TCH.

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 05-06-2012, 05:23 PM   #12
Kathleen09
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Re: ACTH vs TCH chemo - thoughts welcome

Hi Jean,

She is stage II, 4 nodes and 1 is very slightly out of the casing. She is ER/PR+.
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Old 05-07-2012, 06:37 AM   #13
vballmom
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Re: ACTH vs TCH chemo - thoughts welcome

I will start ACTH at the end of the month and am interested in thoughts on this, too. I have a positive node and am Stage IIA. I'm weakly ER+ (20-30%) and PR+ 1-2% and had a UMX and SNB with two nodes removed.

My oncologist feels that the research supports the AC-TH protocol and that there is a lot more tried and true data for it. I have not sought out a second opinion, because so far my case doesn't seem that unusual and his recommendation certainly seems reasonable.

Jean, does the node involvement make a difference?

Thanks in advance.
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Old 05-07-2012, 07:10 AM   #14
rhondalea
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Re: ACTH vs TCH chemo - thoughts welcome

You should probably read this:

http://health.usnews.com/health-news...er-more-safely

The study was reported in the 10/6/2011 issue of NEJM. I chose to link the above news article because it offers the alternate point of view along with the study results.

I received ACTH, and I'm still happy with that choice*, but there is no doubt that anthracyclines can increase the potential for heart problems late in the game. Anthracyclines also increase the risk of acquiring acute myelogenous leukemia, but the risk is relatively low.

(*The study was published after I had completed the AC portion of my treatment. I haven't asked my doctor if her protocol for HER2 has changed on account of the study.)
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
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Old 05-07-2012, 07:23 AM   #15
vballmom
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Re: ACTH vs TCH chemo - thoughts welcome

Thanks, Rhondalea. I plan to stay with what he recommends unless my scans indicate any heart issues. Still waiting for my MUGA, CT/PET scan results.
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Old 05-08-2012, 06:06 PM   #16
'lizbeth
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Re: ACTH vs TCH chemo - thoughts welcome

I chose the TCH option. I had stage IIb, 3 positive nodes, and cancer that had spread to the skin of the nipple. I am 3 1/2 years out from finishing chemo and still NED. I took a TOP2a test to see if adriamycin would be effective. I don't think the test gained acceptance in the medical community.

Personally I am not a fan of extremely toxic chemotherapy. If I had the option I would have chosen Abraxane - because I miss my thick hair. But I avoided Adriamycin because of concerns of heart damage.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 05-08-2012, 06:41 PM   #17
karen z
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Re: ACTH vs TCH chemo - thoughts welcome

Check out the new Patterns of Care (Part 2) thread for some info.
KZ
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