Chemo without Herceptin

BBLady

Chemo without Herceptin

BBLady

Hi

I was diagnosed with invasive ductal adenocarcinoma the end of April.  Had a mastectomy in May.  Tumor was 4mm with calcifications up to 2cm around it.  ER- PR- Her2/neu+, grade 3 with no lymph nodes involved.  My oncologist is recommending Cytoxan and Taxotere for 4 rounds.  Is anyone on that combination without the Herceptin?  He said I'm in a gray area as to whether or not I even need chemo, but is recommending it "for a cure".  I have lots of questions:  Should I do the chemo?  Is Taxotere and Cytoxan a good combination?  Do I need Herceptin?  And, when do the side effects hit - I've heard the first 72 hours are the worst, is that true?

Any help or encouragement would be appreciated!

Thanks!

Cathy-CA

It sounds like you need to have another conversation with your oncologist.  There are computer models available that take into account your personal variables (such as age, health and pathology) and provide an analysis of how chemo changes your odds of recurrence.  If you weren't given this, ask the onc for it.  This information should help you decide whether or not you feel chemo is worth it.  In my case, the model showed chemo making a very significant difference, which made the decision easy.

I am surprised your onc is not recommending Herceptin given that you are grade 3, but this is a question best answered by the onc.  Also, this may be a case where it is worth getting a second opinion given that you are hormone receptor negative.  That means chemo and Herceptin are really the key treatment options beyond surgery.

Taxotere and Cytoxan is a pretty standard combination.  I did Taxotere with carboplatin just because that is what the major Herceptin study used as the chemo combo with Herceptin.  You will sometimes see Taxol used instead of Taxotere, as well.

As far as side effects, I think a lot of us find the first 24-48 hours to not be a problem and then things hit about 48 hours out.  One of the reasons for this is that you will probably be given oral steroids to take for several days and may, also, have an infusion of steroids.  The steroids are to prevent allergic reactions, but they tend to give you energy which means the day of and day after chemo you feel like conquering the world.  Of course, everyone is different, so it's hard to predict.  I finished about a month ago and had very few problems with chemo.  However, there are plenty of people participating on these boards that had a different and less pleasant experience.   There are a lot of meds available to help manage side effects, so chemo is not the grueling ordeal it was even a few years ago for most people.

Ask lots of questions here and of your medical team.  You want to be comfortable with whatever you ultimately decide and that means getting the facts you need to make a good decision.

BBLady

Cathy-CA:  Thanks for the info.  Looks like your dx is/was very similar to mine.  My doc says I have a 85-90% chance of making it to 10 years without a recurrence and chemo will up that to about 92%.  Did you get different stats for recurrence??

suemed8749

Hi BB:

As you can see, my dx is pretty much the same as CathyCa's, and I'm in the middle of 6 treatments of taxol/carboplatin/herceptin. My experience has been much like hers - other than the lovely bald look I'm currently sporting, my side effects have been minimal. I have a neulasta shot 24 hours after treatment (for white blood cell count) and that makes me ache for a few days, but honestly, it's been far easier than I ever anticipated. (Oh yeah - constipation/diarrhea are problems at times, but again, can be controlled with otc drugs.)

I agree - you need to discus these questions with your onc. Best wishes to you as you consider your options -

Sue

Cathy-CA

Hi BB,

Yes, my stats were different than yours, which made my decision easier.  My stats were 55% with no further treatment and 77% with chemo.  Herceptin adds another 11% (50% improvement than from chemo alone), so 88% by doing both.  But, my tumor was 2.4 cm rather than a small tumor with calcification. 

Cathy

Kerry1000

I would speak again with your onc. or get a second opinion.  I'm saying this because it doesn't seem to make sense to do chemo w/out Herceptin if you're Her2-neu positive, unless you have some heart or other issues.  Herceptin adds greatly to survival stats. and has minimal side effects (yes, there is that risk of heart problems which you need to factor into it, but permanent problems are relatively rare and you are monitored for them while on treatment).

The calculations can be found online, I think the URL is www.adjunctive.com or something similar.  It says its for doctors but I'm not an MD and had no trouble with the process.  My diagnosis is pretty close to yours and my 10-year survival rate was also about 92% after chemo, Herceptin, and rads (I needed rads as I had one micromet in a node and decided against full dissection).  Survival w/out treatment was about 50%.  Chemo added the most benefit.

I wish you all the best.  Remember that most oncs. think that "your first shot is your best shot" and to hit the cancer as hard as possible.  Please investigate before turning down (or allowing anyone else to turn you down for) treatments that can determine your lifespan.  Thinking of you,

Kerry 

BBLady

I took your suggestions and have a consult with my oncologist on Tuesday.  Hopefully, I'll get the answers I need, because he wants to start my chemo this week.  I am really not looking forward to it!  Thanks for all your help.

mary6204

I would ask lots of question or better yet get a second opinion.  Why wouldn't they want you to have herceptin if your her2+??  I was also in a gray area, but I chose to do it.  It's not fun, but I would be scared to death about reoccurances if I didn't.  I've had 4 out of 6 TCH treatments (taxotere, carboplatin and herceptin).

For me and most woman I've talked to on this "recipe"  the symptoms don't hit us until after 72 hours.  I am fine until day 4 or 5 and then I get severe nausea, however, not too many woman have my problem.  Lots of woman on this do pretty well.  Good luck, Mary

mimi1030

My mom was dx with Stage 1 in 2004, she had 2cm of DCIS however in there she had 4mm of IDC.  She had complete mastectomy as she wanted to be agressive as possible with it.  She is Her2+++ and Grade 1 (yes they double checked the Grade 1 with Her2 positivity and it was Grade 1) They told her that she probably wouldn't need chemo, then the tumor board decided to do chemo as herceptin was not available to early stagers in 2004.  So she did 4 round of A/C.  No Herceptin.  They told her less than 2% chance of reoccurance, in Sept 07 she was dx with mets to the bones and liver.  So, I am very shocked to see that your Onc is not recommending Herceptin with a Grade 3 Her2+++ cancer.  I would question that.  My mom is getting herceptin now as she is stage 4 and will be on it indefintiely.

I wish you well,

Hugs,

Michelle

AlaskaAngel

Hi,

It remains to be seen whether doing Herceptin alone is the best idea rather than chemo alone. I was treated with chemo before Herceptin was available so have never received Herceptin, but I am strongly ER+ and PR+ as well as HER2+++ and those like me tend to benefit more from hormonal treatment than from chemotherapy. If I were ER/PR negative or under 40 years old I would definitely want Herceptin whether I did chemo or not. 

AlaskaAngel

BBLady

Hi

Talked with my oncologist on Tuesday, who had presented my case to our tumor board  and an oncologist at Vanderbilt University.  All agreed that I should do chemo just as a precaution, but felt due to my stats that heceptin risk was not worth the only 1-2% increase.  (Without herceptin said I should still be around 94-95%).  Because I do have mitral valve prolapse.  So, I've decided to just do the TC.  It's really scary trying to weigh benefits and risk...