TCh vs. ACTh

Hi Erica,  We must have kids the same age.  My daughter just left this week to go back to school and I feel like I missed alot of time with her because I had to go for rads one month she was here and follow-ups, Herceptin infusions, etc. the rest of the time.  Anyway, next summer will be better!  I now have a disagreement between my docs about whether to get a lymphedema therapist or not.  My surgeon, who I saw today, said she does not think breast massage for swelling is a good idea that it will go away on its own in time and the less manipulation to the breast, the better. She also doesn't feel that my arm is swollen ... says that the measurments can be different from time to time because they take them in a slightly different place.  Yesterday, I saw my gynecologist for my yearly checkup and she said I should go to a lymphedema therapist!  Yikes, I'm confused!  Take care, Mary Ann

Hi Binney and Erica,  Thanks for the advice, Binney.  It makes sense to at least see what is involved with the therapy and make my decision then.  Hope all is well with both of you!

I'm in Boston and am receiving TCH.

Hi Ifasano44 I was also given the option of either acth  or tch. I chose TCH . One of my positive nodes had extranodal extensions. I listened to an audio that for me was very convincing. It was by a Dr. Kathy Miller. If you go to Breast Cancer Update 2, 2008, then off to the side hit on audio. Then scroll down past Kathy Miller M.D. She says she is increasingly giving her patients who have five or more positive nodes and are her +  TCH. I found this discussion very convincing for me. One of the five doctors at my hospital, who discussed my case wanted to give me TCH. I was also told that topo11 was not really available. I also read somewhere that if your getting herceptin , you don't need adriamycin. So why risk the heart side effects. I finished chemo aug 6th. Am now doing rads in two weeks. The best to you. Making the decision was the very hardest part for me. Once you decide, you will breathe easier. I also think chemo se are easier with TCH. For me it was not too bad. Most days I was fine. Except for a few days of metal taste in my mouth. Never really had any bad nausea. Just keep alot of peppermints around-they help with the taste. During chemo I was actually able to work a part time job. Even did a lot of walking for exercise. All the best to you.You will be fine.I hope you have someone to help with the babies . There will be a few days after chemo when you just do not feel quite right. I know evryone is different, but It seems most people get through TCH pretty well.

Ifasano44,

It's been awhile since I did the research.  I am node negative but decided to go with TCH without the TOPO information.  Most all of what I read made me comfortable with the decision.  Once you make it just don't look back.  I did have to have a blood transfusion after cycle 4.  Would recommend you store some of your own blood especially if you don't like the risks associated with procrit.  That is the one kernel of wisdom I like to give and is what I'd do if I had to do it all over again.  If you just take the Procrit when they tell you to you will most likely avoid the need for a transfusion.  Most of the oncologists will tell you Procrit is fine and you should not worry about it.  But why take the risk if you don't have to.  My good friend's daughter is a match for her and she gave blood for her use.  I do know of individuals who made it through without the need for Procrit but that is highly  unusual.  

Only 3 more rads and 1 more Herceptin to go and I'm through!  Wohoo!!!

 E 

Erica, Wow, you are almost done, congrats! I can't wait till I'm there.  Thanks for all the info, I start Wed so we will see how it goes!  Thanks!

jc135,

You have done all the research that I did and I agree it is confusing and overwhelming.  I liked the idea I was opting for a gentler approach.  Our bodies are tough but let's face it this does take a toll on your body and for me secondary cancers are a concern too.  Why drop an atomic bomb when a guided missile might solve the problem.  I think Herceptin is so good that the chemo stuff is just a useful adjunct.  I also took very seriously the fact that TCH started out with Herceptin and the AC-TH only gives it after the AC--and for some women if their heart function is compromised they must wait quite awhile to get to the H part...  Anyhow you have to do what you feel comfortable with.  

 Happy Weekend.  Tomorrow is my last Herceptin--my doctor says 26 weeks of Herceptin is as good as a year.  Tomorrow is my 26th treatment...

 Good luck to all, 

E 

jc135,

My oncologist is a researcher and knows all the studies out there.  He says the Europeans get the same results with 26 treatments and based on the statistics it is certainly "as good" and all that is needed.  He doesn't believe in giving more than is needed so he doesn't follow the crowds.  He is a very well respected oncologist in our area.  He says if it is as effective he doesn't want to give more than this as it could do more harm than good.  Herceptin does have heart risks.  Anyway, that is his approach and I have the utmost confidence in him.  That is the important thing.  

My last treatment was today...I am now on a 10 year follow-up plan...tomorrow I have no doctors appointments!  Wow, what will I ever do with all my free time--I have been wanting this problem for a long time! 

Hugs,

E 

flash,

I think a lot of the people doing TCH are pioneers in a new era of breast cancer treatment.  I think a lot of women are looking harder at other aspects of the protocols other than "mortality" outcomes.  They are starting to consider more and more quality of life outcomes.  I considered TCH even though it doesn't have as long a track record as the AC counterpart not only for quality of life after treatment but also quality of life during treatment.  If you just look at survival statistics and if TCH even comes close to AC more and more women especially women with early stage breast cancers are starting to opt for TCH because of these other quality of life issues.  It's not a question of whether women can tolerate it but do they even want to try not knowing what there outcomes will be.  They are looking for safer alternatives.  TCH is that hope that there may be a safer alternative.  I'm just glad there is a viable option now as for HER/2 + patients there was never much hope before.

Hugs to all whichever approach you feel comfortable with, it is a very personal decision each woman must make for herself.

E 

jc135,

I think everyone is different.  That said I went into my TCH with my "TCH buddy".  We talked a lot during our treatments and compared notes.  We both sort of thought we were lucky because we didn't experience much of this at all.  There may have been a few days here and there when I remember things tasting a bit "metallic" sometimes water tasting off.  Sometimes having to ask my husband when we were in a restaurant about whether he shared the same problems with the tastes of dishes (sometimes he said "no, it's not your tastebuds this really is bad!"...The problem with this is we are largely basing our expectations on what others say and this may not be the case for us.  I think I have to agree I have heard more horror stories about AC and truth be told I'm not sure I believe them.  I believe I could have tolerated AC just fine--TCH isn't exactly a piece of cake either.  I had to have a blood transfusion in the midst of my treatment.  I probably would have tolerated AC also.  One thing I can say is even on my worst day I could watch a movie and enjoy it.  Not read a book but watch a movie.  I have a friend doing AC now and she seems to be doing quite well--sort of like I was on TCH.  She seems to be out and about and doing moderate excercise, going to the beach on weekends, etc.  So, I'm really getting confused about quality of life during treatment--maybe not much difference.  But maybe a bit more nausea with AC?  Hard to say unless I had to do both to compare...I hope never to have to do that! This is an interesting discussion as a lot of the SE's reported by others probably influence our decisions--I was concerned about all the bad tastes and not eating my favorite foods but the fact is I was enjoying all my favorite foods and my complaint lies more in the direction of the steroids always wanting me to have food in my stomach so I gained weight--around 10 pounds.  Looking forward to getting this off but it will not be easy.  I do have tremendous energy and did have pretty much throughout.  I was working out at the gym all the way through and sometimes still had a very decent energy level.  Not sure this is true for AC but I don't know.  

Hope this helps, this is a very difficult question...

 E 

Thank you Erica, that is heartening to know that you handled it so well and that you had energy (most of the time) to do things, and were able to enjoy food! I can't believe you actually gained weight, I've been pigging out on all my favorites for the last few weeks, in expectation that I will probably loose a ton of weight on chemo from not wanting to eat. I am actually what many call a "foodie" and along with travel, quality eating, dining out,  (and wine--which I expect not to drink during chemo either) is part of the joy of living to me, so I have been really bummed about this taste thing. Its great that both you and your friend were able to enjoy food to some extent, that gives me some hope  

I am heartened too that you were able to go to the gym. Although, I'm a little hesitant to go there as it seems (even when healthy) that it is a mecca for catching colds etc. I never caught so many colds as when I joined the gym, even though i use Purell before and after touching the equipment.  I may look into buying an exercise bike for home.

 As you say, everyone reacts differently. I know that before my mastectomy I was expecting all sorts of issues but I sailed through that and felt pretty fine within a couple of days. Never even took anything other than plain tylenol for pain!

Lfasano44, good luck with your treatments! I will start in about two weeks (a bit of a delay because my drain was in for three weeks and they want to wait two weeks from the removal to start, to be sure its healed completely.) I will be looking forward to hearing how you are faring.

How does everyone feel about the 10% that Slomen refers too who definitely [those that are her2 positive and have the topo 2 gene (that there is STILL no national -or standardized -testing for]benefit - and ONLY - from an adriamycin based chemotherapy?  Making the decision to go AC-TH or TCH was agonizing for me.  Further, I think it's ridiculous that in so many instances the oncologist leaves the decision in our hands!  I didn't go to medical school for 8 years.  I don't understand - except in very clear cut instances - why these chemo docs have us make the choice.  Does anyone think it might be so that they are not accountable later?  I hate to be negative - but when this all started for me, I NEVER thought I would have to weigh the plus and negs of my treatment and make a decision based on background I just don't have.  And don't get me wrong - I'm not stupid.

 Anyway, I think it would be an excellent forum topic for BC.org to have a discussion of the plus and negatives of non-Adriamycin based chemo - and also on why it is taking so long for topomorase 2 gene to be standard test for breast cancer diagnosed women.  (Sorry, might be mispelling topo here - but I don't have time to look up.)

 Thank you.

TCH stands for Taxotere, Carboplatin, and Herceptin.  In my case - and I definitely don't know if it's the case for all TCH receivers, I'm having 6 cycles of the TCH every 3 weeks.  Followed by Herceptin alone for an entire year, still in 3 week increments.

EGAL, wow, hang in there.  It sounds like you've been through alot.  I wish you all the very best.

JC135:

 If you've already made your decision stick with it and be comfortable.  I'm half way through TCH and wish I would have chosen AC-TH - just to be on the safe side.  I'd rather die of heart problems than cancer basically.  But the quality of life while you are alive IS probably the most important thing.  Also, only 5% of the woman treated with "A" based regimes develop heart problems that last.  So in light of all of the cardiotoxicity talk, I don't understand this percentage isn't kept in mind.  My doctor was definitely pushing toward TCH.  Re: your tastebuds question.  I only loose I'd say about 50% of my ability to taste for about a week/week in half after infusion.   People don't really loose that much weight with chemo anymore, because they've found drugs to make the sides effect much more tolerable (Emend, Kytril, Decadron) - so although I don't think any woman should worry about her weight - especially now - you'll be able to eat and relish the food most of the time.  As I've mentioned, I've 3 rounds through my 6 rounds of TCH (with full year of Herceptin) and I've only lost about 5 pounds.

All the best to you.

johnwayne:  As you can see from my previous posts, I started TCH last week. My onc is Dr. Bill Gradishar in Chicago and is known as an expert in the bc field.  I honestly don't feel that these docs would lay it in our hands if they weren't confident that both treatments were fine for us.  My local onc feels the same way.  I have to be confident in both their opinions and my own because I know myself and they know how to treat what is wrong with me.  I think you should just look forward with the TCH and not wish you had done the other because what good does it do you now?  I have 3 kids under 6, believe me I did not enter into this lightly, I will do anything to get rid of this nightmare.