TCh vs. ACTh

My first diagnosis in 2005 for a 7mm infiltrating cancer was nothing short of a miracle. I just had a dogged radiologist who wasn't satisfied that it was "nothing" or "something to watch." I had ultrasound and then a stereotactic biopsy (under ultrasound so they could find the site) and then left in a marker where they took the specimen. Pathology showed it was a cancer. I had a lumpectomy followed by radiation, followed by tamoxifen. I had mammograms every 6 months for 2 years and since there was no evidence of change, that went to annual. This was considered to be the conservative approach because there weren't conclusive tests even in 2005 to determine whether or not I should definitely have chemo.  On the very next mammogram at 3 years, i had what we hoped was just scar tissue, but was a recurrence of the original cancer. So, I had a mastectomy and tram reconstruction in June and have been doing TCH since July. Three years ago TCH was not the protocol, but since Herceptin has become the therapy of choice. I didn't respond to hormone therapy (tamoxifen) so hopefully the H will do the trick.  Taxotere and carboplatin are are being used as cleanup for those microcells that somehow survived through the radiation last time. 

I had to do my research about TCH because of the long history of data using AC. My family has a strong link to leukemia, and AC increases that risk, so that's why I campaigned for TC. My oncodoc saw the benefit either way, H being the most important piece of that.

I also asked about the topo II  link, but found there was no way to test definitively for it right now. I still think I made the right choice with TCH. I'm three rounds into TCH now, and managing. I get Herceptin in between each week, but after round 6, i get H every 21 days until next July. Herceptin hasn't been any problem alone, thankfully. I will feel better protected with it, and this was not an option I would have had in 2005. Medical science is moving so fast! 

We can only look ahead and be positive. You are among friends who really do understand what you are going through in body and spirit!  Take care.  Gail 

Just for the record, I've made my decision to go with TCH...based on my own research and also in part by the encouraging comments here. lfasano44, thank you for providing the name of your oncologist (and I looked him up!), because it is encouraging to me to hear of another top specialist recommending TCH. I agree with you, that they wouldn't put it in our hands if they felt there was one with a clear-cut advantage.

Hi everyone, I just got back from a fun trip to Boston.  My Onc who is considered one of the best in the area recommended AC-TH for me.  Well, I did a lot of research on my own and what I found made me feel uncomfortable with this protocol and made me prefer TCH.  So I wrote him an agonizing letter thinking he would want me to go with his approach and his approach only.  I was floored because shortly after I delivered the letter I got a call from his office and they said that he was fine with my choice--he applauded me for my research and ability to understand and said he thought I would do equally well with either one!  Was I ever relieved!  He doesn't have many people in his practice that even want to get involved in the decision making so I guess he was surprised when he read my letter!  I was so happy that he was wholeheartedly supporting my preference and decision. 

Hugs to all,

E

By the way, I got a cool T-shirt in Boston that i wear.  It gets a lot of comments...It says, "Wicked Pissah with Boston underneath in smaller letters.  Was I ever surprised when I found out it actually means something like Totally Awesome.  Too funny! 

Thank you all.  Tuesday is round 4 of TCH for me and the regime has been surprisingly tolerable.  You all are a great source of comfort and information.  I hope to be as helpful as you one day.

MaryAnn, good to hear from you!  I too have the tingling toes.  It gets pretty bad sometimes when I work out on the tread mill and particularly with tennis shoes.  Sandals seem to be better for me.  I was told to wait about 6 months out and see if it gets better otherwise I just ignore it.  I am still getting massage and the therapist showed me how to do it myself.  Trick is to massage the scar tissue with your fingertips.  She said the scar tissue buildup makes it harder for the fluid to drain out of the breast.  I do notice after the massage it is softer so I will start doing it myself.  I hope you find some good help in your area.  I do think it will get better--the massage should help.  Did you find a therapist?  Take care all!

Erica 

MaryAnn, well it sounds like they could solve your problem by draining it--might take a couple of sessions.  I read up a little on seromas.  It is interesting and maybe the massage would not work, I don't know.  This pocket of fluid may not be something that the lymph system could absorb.  I'm sure they will help you through this although I know it is aggravating.  My breast seems ok except for all the scar tissue that I am forming.  The therapist says the scar tissue hampers draining so she keeps working and showed me how to do it myself.  It has helped.  I hope they do something to  help you rather than just say stick it out for months and months and give antibiotics.  However, I did read that draining it can actually lead to infection.  So if there is no infection right now maybe that is what they are concerned about.  Glad you are otherwise feeling good.  Let us know how they treat this....I guess it is not at all a rare occurance and just another of those nuisances we must put up with.  This too shall pass--the sooner the better!

 Hugs,

E 

Good luck everyone with your TCH.  I finished 6 rounds of TCH January 2007, and had to stop the Herceptin in May 2007. it's now been almost 2years with NO recurrance.  I DID have the TOPOII test, and I started TCH when practically NO one did on this board.  Other than "sewer mouth" for a few days each cycle, it was VERY doable.

MaryAnn, I have a seroma too... and have had it aspirated a couple times.  It feels like s golf ball in my boob. But, it seems to fill up slowly and if it causes pain, I go talk to my surgeon. Otherwise I ignore it.  Good luck with yours.

Hi, my name is Carolyn and i am starting chemo on Dec 1 and I admit I am a bit freaked out! I am trying to learn everything that I can about the treatment that I will have, TCH, which led me to this site. Reading your posts have given me a lot of encouragement that I can and will get through this whole experience with a sense of humor and a great education on a subject I never even considered relevant to my life. Ha! The last month has been a rollercoaster ride of emotions and it is great to read posts that reflect the same concerns and fears that I am facing. You are all amazing, strong women who are taking an active role in your treatment and I thank you for your courage and your honesty. Take care.

Carolyn

I am starting TCH in Dec. (12/12)  every 3 weeks 4x ---

I have been posting on other HER2 sites regarding my flip flop on Her2 +status (the oncotype results showed HER-)  and my oncotype score 16.    My oncologist with my approval is treating me as Her2+ but switched from ACTH to TCH.  I feel releived to make a decision  and it is good to know that there are less s/e than in some of the other regimes. 

 I am so thankful for this site... by the way my code word for this experience is the BC roller coaster  taking an active role , researching  is my way of dealing with this.

Hi MaryAnn and you newcomers!  

 I have a funny story to tell re rollercoasters.  I was 2 weeks out from radiation and it was my daughter's 10th birthday.  She wanted to go to Busch Gardens and I rode with her on her first roller coaster ride.  She liked it so much she wanted to do every roller coaster ride in the park and they have 5 different coasters.  We did all 5 together to celebrate.  I have a photo of me and my daughter on one of the rides.  Had a great time but 2 days later my breast lymphedema is back really bad.  After another month of lymphedema massage my radiologist sent me to a surgeon--she was concerned about all the lymphedema in that breast plus she ordered my bilateral diagnostic mammogram and an ultrasound early just to make sure all was OK.  The good news, the mammogram came back fine but the ultrasound showed what they said was a cyst.  So when I got to the surgeon he said this "cyst" was a seroma.  So I probably had this all along but the roller coaster rides worsened it.  Today it is getting back--the surgeon said she could drain it for me but since it was not causing me any pain I just said I'd wait and see.  She told me if it started to get painful or looked larger in my future exams she would drain it for me.  So now I have a seroma too for sure.  The surgeon said the massage is OK with the seroma-- I am doing it myself now.  Welcome to the seroma club-- this must be quite common.  I don't advise you to go on any real roller coaster rides!

Hugs,

Erica2 

Hi Erica,  Yes it does seem as if seroma's are more common then most would think.  I've had one since my orignal surgery which was 1-3-06.  Its a large one.  About 7 x 4 x 6.  It's really long and they keep checking it with ultrasound and I have to laugh...they always put on the report "Slowly resolving seroma".  (HELLO...SLOWLY...yea...almost 3 yrs now...and it hasn't gotten much smaller since the say they first measured it.)  I'm not sure how much slower it can get.  hahaha

Mine is painful even though my surgeon tells me they aren't suppose to be.  (I don't care what they are suppose to be...I only know what mine is...and it HURTS.)  lol  He's a idiot at times.  He tells me I must be confusing it with "pressure" build up.  Yes...I feel  the pressure...but it also has sharp pains that run through it off and on...and a burning sensation that actually hurts.  Its pretty big and super hard to the touch.  I've gotten him to drain it twice for me.  He doesn't like to do it because of risk of infection which I understand.  But soon...I have to have it drain it at least once more because it it driving me crazy.  It such a relief when its drained...just wish it would stay that way.

Since yours isn't bothering you I agree that you might as well leave it alone.  I just strongly suggest no more roller coasters.  lol  In fact...I think I'll make sure I stay off of them...heaven forbid mine gets any larger.  Thanks for the warning.  Who would of thunk it.  lol

Chelee

MaryAnn -- I think all medical treatments are a bit regionalized based onjewellerywhat the big research hospitals in the area are doing. Dr. Slamon is head of research at the Geffen Cancer Center at UCLA, so it wouldn't surprise me to hear that UCLA is only doing TCH. diamonds I'm in CA and will be doing TCH, but my onc (who did her training at UCLA) originally wanted ACTH because she felt it was more proven. I was not offered an option when treatment was first presented. It was only when I did my own research and came back saying I wanted more information on why she wasn't considering TCH that she said if I felt more comfortable with TCH she was fine with that instead. So, I would say her interpretation of the data is that ACTH is a slightly surer bet,body jewelry but the data coming out of BCIRG006 is promising enough that she's willing to prescribe TCH.