TCH: X4 vs. X6 ???

[DLL]

I am on the 3rd of 4 TCH treatments (every three weeks). I am concerned that most (all?) posters I see on this bulletin board who are on the TCH regimen are having 6 treatments.

I asked my oncologist about this, and she said those with 6 treatments are probably node-positive (I am node-negative), so that is the difference. But I'm not so sure that statement is validated by what I am seeing on the posts on this bulletin board. Hmm... Is my oncologist making a mistake? I want to get the maximum protection from chemo. Should I be pushing hard for 6? (Not that I love chemo and wouldn't be delighted to be done at 4, but after going this far, I don't want to leave a crack in the door if 6 treatments would close it!!)

Can anyone share any wisdom (or research?) on 4 treatments vs. 6 treatments of TCH? And I'd love to hear from others who were/are similarly scheduled for only 4 treatments of TCH (and what the rationale or research was for that decision). THANKS so much!

DLL: Age 47, Dx 7/2008, IDC, 1.1cm, Stage Ib, Grade 2, 0/4 nodes, ER+/PR+, HER2+, pre-menopause; otherwise in good health! :-)

P.S. The C in TCH is carboplatin.

P.S.S. I am aware that the NCCN Practice Guidelines call for 6 cycles of TCH. But those were published in January of this year, so I'm wondering if there has been some new research or protocols that suggest 4 is enough in certain cases (and, if so, which cases)???

[Jackie07]

Sounded like your doctor is following a new protocol based on the FinHer study that 11 weeks of Herceptin can achieve 98% of the effect of one full year.

Since yours is a grade 2 and mine is a grade 3 (faster growing), I wonder if that is also a factor for your doctor's decision.

The more important thing is to keep close watch of your 'scar'. My 'recurrence' was growing out of the left over tumor and for four years it was deemed to be 'scar tissue'. So please pay close attention and do your self exam frequently. My follow-up mammagram had always been painful because there was tumor there still. But everybody misdiagnosed it and I did not demand an answer soon enough.

[Chelee]

DLL, I did TCH and did have 6 cycles...but I was node positive. That being said it seems to me that most if not all that get TCH do have six treatments. (Anyone that knows different feel free to correct me.)

It's been a while since I finished my chemo so things could have changed...but I am surprised I have not heard of this?

I would feel exactly as you do...I would want the full six treatments regardless if I had negative nodes. As you know her2 bc is more aggressive so I would want to hit it as hard as possible the first time around. The only way to have complete piece of mind is to know you went after it as hard as possible when you had a chance. And as far as I know the standard is six cycles of TCH regardless of node status. Speaking for myself I would push my oncologist for the last two.

I give you alot of credit for doing your home work and being so proactive...that's so important when going through something like this. You are on the right track so keep it up. Give you oncologist a call and talk to him/her about your concerns.

Chelee

[Lori R]

DLL,

You are seeing the power of the wonderful ,experienced people on this board!!!

While I can't provide specific guidance in regards to the 4 vs 6 rounds of TCH. (I had 6 rounds of T&H)....

I can support Chelee's words of wisdom....Push your Dr. If it will provide you with years of reassurance, go for the gusto. (I believe that coming out swinging has been the preferred approach of most on the board)

It was through the support of this site that I challenged my Dr. to receive radiation. She had pretty much told me radiation wasn't given to women that were metastatic. After I said that I wanted it, to her credit, when I returned for my next visit she was on board 100%.

So....if you are up for another couple rounds of the ride...my vote is to "go for it".

Good for you for educating yourself and actually having an opinion!!! So many patients don't know enough to ask.

Keep us posted!! Lori

[Becky]

Most folks on this board know I keep up even though I have been done with treatment for years. I have NOT heard of 4 TCH treatments or any studies on doing less than 6. I would ask your oncologist to forward those studies to you and tell her that you have not heard of less than 6 and would like to know what the standard of care with TCH is. Also, are you getting the full year of Herceptin (herceptin to continue alone until one yr?).

I do want to state that I keep up and may have missed things so approach your onc in a nice manner but I am sure someone on this board would have picked up on any new early bc protocol (and I have gone to the big shows and seen the most up to date studies).

[duga35]

I also had 6 rounds of TCH and was node negative. In fact, after about the 4th or 5th round I asked my doctor if I could just quit because the side effects that I had were very severe, and I was sure that there couldn't be any bad cells left after going thru that, and he advised me not to stop.

Good luck to you!

[kcherub]

As you can see from my stats, my diagnosis was very similar to yours, and I was scheduled for 6.

I agree with Becky...ask to see studies on 4 vs. 6 because you can't find anything about it yourself.

Take care,

[Jean]

To tag on...node negative...6 TCH treatments
this was advised by Dr.Slamon....

I think you are wise to question!
Best of luck.
Jean

[Lien]

Dear DLL,

Reading your path statistics I think that perhaps you would not have received chemo at all in Europe. An Austrian research group found that for ER/PR + women, hormone tx was just as effective, sometimes even more effective than chemo.

Having said that, you obviously feel you are not getting optimal tx. You should discuss this with your onc. Perhaps she weighed the pro's and cons without explaining them to you? I think you are entitled to have your say in this. You may want to consider having a second opinion.

I decided on hormonal tx when the oncology panel that reviewed my case didn't think it was necessary. I asked for a second opinion and the onc at the Dutch National Cancer Intstitute gave me my options, showed me what my odds were in Adjuvant online, and told me that I would have to decide for myself.

I felt that, because my youngest child was only 3 when I was diagnosed, and my 8 yr old was having behavioral problems, I had to do anything to up my chances of seeing them grow up.

Ofcourse, there are no guarantees. Anybody can have a recurrence. I know a woman who had mets to the liver 12 years ago, who has been NED for years. I know a woman who was diagnosed with a more favorable path report at the same time as I was, who had more aggressive tx, who developed mets within a year.

You have to do what feels best to you.

Hugs

Jacqueline

[BonnieR]

I only had 4 doses of TCH. (Now this thread is scaring me!)

There was alot of discussion about my course of treatment. I was in a "grey" area because my cancer was "small" albeit aggressive. I got 3 opinions, all different. One very accredited oncologist/researcher said I needed NO treatment and thought any chemo would be OVER treating me. Another recommended TCH "Without the carboplatin"! My own onc inititally was going to administer Herceptin alone. After my Oncotype came back highly positive we decided to do the full boat.
But we stopped at 4 doses because of her concern about permanent neuropathy and other side effects. She felt I had a sufficient course as long as we continued for a year of Herceptin. I feel I got the best of both worlds. I hope.

['lizbeth]

I was node positive, with 6 treatments of TH (I opted out of C). Just had a Pet scan with no evidence of cancer critters.

'lizbeth

[Rich66]

'lizbeth,
I love that your post is laden with obscure medicalese yet ends with "critters" ;)

[CindyE]

I had only 4 treatments of chemo and was node negative. I didn't have Carbo though. I was told only 4 rather than 6 as nodes were clear.

[Sherryg683]

My friend who had the reoccurance is on ACH, which is very similar to taxotere is doing 4 rounds. Our oncologist recommended 6 because that is what is the standard. She went to Sloan Kettering in New York for a second opinion and was told 4 treatments would be enough. I had 5 treatments of Taxotere Xeloda and Herceptin, I was scheduled for 6 but when my scans showed I was NED after 5, he said that I could stop the Taxotere and Xeloda. I offered to do one more but he said it wasn't necessary...sherryg683

[talbrig13]

I had 10 TCH every 2 weeks from Feb 07 until Jun 07...then Herceptin alone until Feb 08 every 3 weeks. I believe my onc tailored my treatment to minimize side effects.

[Mariposa]

Only about 1 to two months ago I talked with a lady sceduled for 6 (I think FEC) After the fourth she stopped due to the fact while she was given the fourth she had a leak in the porth a cath so of course she had serious troubles. They investigated afterwards the portacath and couldn't find the problem. So the onc advised not to take the risk having the two last ones, since the more chance to survive was only and it is so stupid because I don't really remember it. It was ridiculous low. I think it was 0,7%. I for sure will ask this again.

[rebecca0623]

I was node negative and am having 6 rounds of TCH. One oncologist wanted me to do this with avastin despite being node negative with a 1.2 cm tumor (small she said) but she said node negative does not mean certainly negative, just may be too small to detect. I opted out of the avastin.

[DLL]

Thanks, everyone, for your helpful comments! After talking with my oncologist about my concerns, we've decided to extend my treatments from 4 to 6, more for my peace of mind than anything! Apparently this is kind of an unsettled area for node-negative HER2'ers, at least among some oncologists. I will have treatment #4 next Monday. Onward!

[Chelee]

I'm glad your going to get you six cycles. In the long run I think you will be so glad you did. You can look at those last two cycles of chemo as added insurance to kick "it" into the twilight zone. There are alot of node negative women on the boards and it seems most all of them had 6 treatments regardless. So this should help you rest easier at night when your finished.

I'm glad you were proactive in your care. Hang in there...it won't be long now and this will all be behind you.

Chelee

[Paris]

I'm glad you were able to come to a decision. It is so tough to come up with the "right" solution. We are making critical life decisions based on ever changing research. The best we can do is educate ourselves as best we can which you were smart in doing and then hoping it was the right choice. We are looking at studies from past years and who knows what the studies will show in future years? You just have to find a way to keep your chin up and stay hopeful.

As for me I did four rounds of taxotere and cytoxan followed by one year of herceptin which turned out to be only 12 rounds. Perhaps if you do carboplatin you need the six rounds? Like one of the other posters felt, it is scary to see all the six round people and not many four round. I saw two oncs who had the same treatment protocol one of whom was involved in the clinical trials for herceptin so I was/am confident in his philosophy. In a way I'm glad I didn't do six rounds because I broke out in an very bad case of hives after round three and I was on so many drugs to keep it under control I would hate to think what it would have been like to have to do the two additional rounds.

[DianneS]

I am node negative but had a grade 3, 2.1 cm tumor so I am scheduled to have 6 TC sessions and I think 11? Herceptin treatments along with the TC.

Reading what some of you who have taken TCH it sounds like it's going to be tough. I had a reaction to the first treatment of Taxotere last Thurs - tight chest, flushed face, swelling of face, and got 50mg Benadryl which helped right away. I had taken the Dexamethazone the day before and morning of treatment. But no one told me to take a Benadryl tab that night and I was pretty puffy in my face.

I'm wondering if the TCH is really that much easier on the body, compared to the AC treatment?

Also, my first onc said having a grade 3 tumor was equal to having 3 positive nodes. Another highly regarded breast cancer specialist onc said 'not necessarily'. So who is right? I was so happy about having no positive nodes.

Diannes

[Lien]

Hi DianneS,

I don't know about chemo, because I didn't have any. I do think your onc is being overly symplistic. As far as I know, Grade 3 means that the cells are very different from normal cells. This may mean that they are more likely to spread, but I'm not sure about that. Your onc could be right.

The fact that there is no cancer in the nodes, means that it hasn't spread yet. I've heard about much smaller tumors that had spread, so apparently, yours isn't a really fast spreader.

Do you know if there was any lymph- or vascular invastion? This means that cancer cells got into the vascular or lymphatic system within the breast. That could point to an ability to spread.

You are getting chemo to kill those stray cells, if they have escaped already. So you are taking care of that. Being Her2 positive used to be viewed as prognostically worse, but with Herceptin I think that's no longer the case. With your path report and this treatment you have an excellent chance of not ever seeing your cancer return.

I wish doctors would realize what impact their words can have on a patients' state of mind. They should ask themselves what they want to achieve by saying these things.

Please go back to being happy about your nodal status. I had grade 3 and clean nodes, almost 5 years ago now. I'm NED.

[Lien]

I meant to write: lymph- or vascular invasion.

Jacqueline

[DianneS]

Hi Lien,

The path report said no vascular invasion and all my lymphs were negative (8 taken in total). Supposedly there is no cancer but it's that one stray cell that could cause problems.

I'm happy to know that you didn't need chemo! Lucky is something I am not.

What was the size of your tumor? And I assume you are her2 positive?

I think, from reading lots of posts that this whole thing is a crap shoot. Some people with small tumors get a recurrence and others with larger ones don't. Or the reverse can be true. I know Herceptin is supposed to make a difference but there is so much that they don't know about it. I was just reading on a post here somewhere how Herceptin can cause some women to go from her2 + to her2 -. Not knowing my prognosis after 10 years (or even 5) is stressful and makes it hard to keep positive, for me at least. Having just coped with a life threatening illness (brain aneurysm) 2 years ago I'm drained emotionally and ticked off that I have to deal with yet MORE. I can't even find anyone who is 10 years her2 pos and doing well! How can I be positive knowing that?

It's enough to have to face chemo, but to go through it with absolutely no guarantees that you'll come out the other end in better shape is enough to make me consider doing nothing. That's where I'm at now.

Diannes

[Lien]

Hi Dianne,

It's quite normal to feel this way soon after diagnosis. Especially when you've had to deal with a prior heath disaster (or near disatster). I know; I'd been in a car crash a few years prior to my diagnosis. But believe me, it gets easier with every year that passes. Now you have to get through treatment first. Your path report sounds very encouraging to me. The chemo will quite likely take care of any stray cancer cells.

In the Netherlands, where I live, 80% of breastcancer patients survive at least 5 years. That's including those with advanced disease. I think you have every chance to live a long, healthy life after this. If you would like to know the odds of surviving this, you can ask your doctor to run your path report data through Adjuvant! an online prognostic tool. Or if s/he doesn't want to do that, give me a shout and I'll do it for you. My doc gave me his password a few years ago.

About Luck: I have no idea what that is. People who hear my life story are amazed that I am still here. There's been a lot of bad luck in my family. I've learnt the hard way to be happy regardless. It's not easy. But as far as we know we have only one life, and it's up to us to make the best of it. I've been depressed and scared and angry and frustrated. But I'm at a better place now, that I'm almost 5 years out from diagnosis. Believe me, those feelings you are dealing with right now will pass.

If you feel your doctor isn't supportive or if you feel s/he isn't giving you the right info, go for a second opinion. Or a third, if you have to. Find the doctor who will work with you in this batte against cancer. Would you hire a plumber who doesn't seem to be right for the job? I bet you wouldn't. So why not shop around for a good doctor?

As for not finding any women with Her2+ disease who survived 10 years: they don't need the online resources. They have moved on. They probably think about breastcancer every now and then, but less with every year that passes. They have other things to occupy their minds. I personally know quite a few. I even know a few women who have survived Stage IV disease and have been NED (no evidence of disease) for over ten years.

It's a crap shoot, but your odds are quite good! Hang onto that, get through the chemo and come to this site everytime you need to vent, chat, cry for help, or just plain cry.

You can do it!

Hugs

Jacqueline

PS. My cancer info is in my signature below:

[DianneS]

Lien,

I'm sorry you've had to go through so much! Life just is not fair, for sure. I forgot to mention that I had both ovaries removed just 9 months ago for a benign cyst. Three surgeries in two years is a bit much. Also, my mom died 8 weeks after I had the brain surgery which was a double wallop.

I hear what you're saying about survivors. I know they are out there and I think it would be terrific if some of them would communicate with people who are just starting out on this journey. This is a scary breast cancer and sometimes just hearing from women who have come out the other end of this ordeal intact can be so heartening.

The first onc gave me about 70% because he hadn't figured in Herceptin. They use Adjuvant also but I guess it helps if they know HOW to use it!
My current oncologist - the second one I spoke to, gave me 80% of no recurrence in 10 years. She's a fantastic woman (google Karen Gelmon in Vancouver, British Columbia, Canada). She writes the protocols that other oncs use here & has co-authored quite a few books about breast cancer. She is quite ticked that the onc - or the oncs chemo nurse who administered the treatment screwed up so she is admitting me to hosp so she can do it herself.

It seems to me, and I won't name names here, that there are several women on this forum who had negative nodes and unfortunately had a recurrence anyway. If the researchers don't quite know what triggers her2 how can they cure us?

Also, I know that Herceptin works 'in about 50% of cases'. How do I know if it is working?

As you see, I am a sceptic! I like to know facts and her2 is still such an unknown.

If you don't mind my asking - how did you feel generally in between treatments? Just wondering what the TCH will do to me. Did you have treatments every 3 weeks?

Diannes

[DianneS]

Lien,

Oh, forgot to ask -

How did you do on Herceptin? Any heart issues during or after?

What is the Netherlands doing regarding breast cancer? Those are great percentages for 5 years after being dx with this stuff. Is that all breast ca including her2 pos?

Diannes

[Lien]

Hugs

Jacqueline

[Lien]

Something went wrong there. I typed out a whole post and only the Hugs showed up! Now ofcourse, that's the most important part, but still... ;-))

I didn't get Herceptin or chemo. I'm on Zoladex, to put my ovaries to sleep, and Arimidex.

Like I said, people on this forum are the ones who don't do well, mostly. They post here because they continue to fight cancer. It's part of their lives. If you go to the BreastCancer Discussion List http://bclist.petebevin.com/ and look at the archives, you will see that many, many there do well. They have become friends over time and stay on, even though they haven't recurred for years and years.

The Dutch statistics include Her2 positive BC.

Perhaps you are seeing things less positively because you have been through so many scares recently. Would you consider counselling to help you get through this? I know it helped me a lot. It made me see things in a different, more positive light. Which made it easier to deal with things. For me the hardest part was after I finished radiation tx. I felt like I wasn't doing anything to keep the cancer at bay. So I went back to my doc. and asked about hormonal therapy. They said I probably wouldn't need it, but that I could have it if I wanted to. So I decided to do it and feel much better about my future. Just being able to take action made me feel like I was more in control of what was happening to me.

You beat all the previous health issues; you can beat this one too!

Hugs

Jacqueline