Any advice?

Tonya36

I have posted on here before about having difficulty choosing a chemo cocktail.  Onc gave me a choice of EC x4 and Taxotere x12 or Taxotere/Carboplatin x6.  I went to Duke yesterday for a second opinion and spoke to a  breast cancer specialist (Dr. Kimmick).  She is not happy with either plan of action.  She says they are not using the Carboplatin on triple negatives in the early stage of breast cancer yet.  She says not enough studies on the TN's.  Maybe in 4 to 5 years but not right now.  As far as the other plan...well my onc said the Epirubicin has a 2% less chance of heart damage than Adriamycin and thats why he gives it.  Duke says that is true but Epirubicin has a higher chance of leukemia and once you develop leukemia AFTER chemo it is much harder to treat.  She also brought me a copy of a study from the New England Medical Journal put out in 2007 that says that the weekly Taxotere has proven to be more toxic than Taxol and the weekly is not more effective than the dose dense.  Needless to say her plan is AC x4 and Taxol x4.  I am so CONFUSED.  She was very nice and very intelligen.  She was spitting studies out off the top of her head for me to tell my local onc.  The problem is that Duke is out of my Insurance network and I cannot afford tx there not to mention it is 4 hours away.  So now I am going to my onc on Monday and give him this info and hope he is receptive to it and can help me.  I don't want to insult his intelligence or education but I want the best and most agressive tx I can get.  I don't really know how he will react to this and what if he refuses to do it?  Do I just take what he says because there is noone else local to really go to.  So many hard decisions.  Does anyone have any input or suggestions on this?  I have seen where some people have had this combo of AC +T.  Have you had good results?  Has anyone had the weekly Taxotere with good results?  What about the epirubicin?  I would appreciate anything you ladies have to say.  Thank you.

 Tonya

CalGal

Tonya -

You defnitely did the right thing to get a 2nd opinion!   While it has given you additional good information, I know it makes the decision more difficult.  Hopefully, your local onc is open to this discussion.  I've been fortunate in that my onc's have been open to that, and for me, if not, I would have changed onc's. 

Just in case your onc isn't open to the discusion and/or changing treatment, are their other onc's at the local treatment center?   If it comes to it, don't let the fear of hurting an onc's feelings deter you from doing what is best for you!

On my initial bc, I had bi-lateral lump's, clear SNB and 38x rad'tn on the invasive side.   I did not do chemo until I had recurr bc and mets.   I'm also a BRCA1 trip neg.  That said, I never had chemo as an "early stage" patient.

My onc proposed 4 AC, then 4 Taxol and then a scan.   I went into research-mode and felt that dose dense AC was better for me.   I also wanted scans BEFORE doing the next chemo.   She agreed to both.   For me, the AC worked fantastically!  (The hair loss sucks).  But, during the delay for outside opinions to push my HMO to do a liver biopsy, my tumor became visible!  The AC immediately knocked it down and reduced my liver mets.  Per an outside onc, he rec'd additional AC, so I did 2 more for a total of 6.  Scan again.  

Per my continued research, I thought Taxotere & Carboplatin was a better option for me than just 4 Taxol.   My onc reluctantly agreed as she had had two patients who had severe reactions to the Taxotere.  Let me add, that between AC and RFA (radio-frequency ablation, which I also had to fight for), my recurr bc and liver mets were gone!  I did the additional chemo anyways as additional protection. 

Oddly, my MUGA scan was higher after I did the dd AC!  

Let me add that there are 3 chemos in the taxane family, Taxol, Taxotere & Abraxane.   The advantage of the Abraxane is that you don't need a steroid (Decadron or Dexamethasone) as a pre-med!  You might also want to bring that up. 

You're on the right track to be trying to figure out the best option for you!   Its hard ... there is no one right answer.  Maybe a 3rd opinion would help ...

Best to you,

CalGal 

FloridaLady

Hi Tonya,

I did dose dense Taxotere with my first round of chemo, along with Adrian. But I was Stage IIIC at dx.  I did not have that many side effects. I think the biggest thing you are going to run into, is standard treatment for early stage bc and you must do the best understood protocol's first.  I think insurance is controlling a lot of this.  Why give you the more expensive chemo's that do not have the research together yet that they work any better. TN drugs are still in the experimental stages. I was just told again by my onc. that they are out five to six years before they know if we are being treated with the best drugs, dose and number of times tx is given. Also you must have be Stage IV to receive Abraxane. Carbo is also 2nd or 3rd line in the protocol's right now. I find it interesting they are offering it to you.  If it was me...I would do Taxotere and Carbo. 

Early stage bc the treatments are pretty standard unless you have health issues that keep you from taking the standard chemo mix.  There is no proof yet if dose or frequency makes that much different in treatment response, but there could be a difference with side effects, and that is why they are moving away from dose dense treatments. Plus the big thing too remember with TN is... that we each could have a different disease makeup.  Just because it worked or did work for me, does not mean you will respond the same way.  TN is just a generic word for undefined bc.

Tonya, Please remember your disease was found early and this is the most important thing. None of us ever have a guarantee that our treatment worked, even if we had all the best doctor and they got together and agreed.  They can not know how your body will respond to a drug or treatment.  So please do not 2nd guess every step of this journey.  The biggest thing about cancer is you have so little control.  You have to find a doctor who you feel is willing to discuss with you options and just jump in to treatment, so you can get back to your "life". 

I hope you find peace and a doctor who is like mine...a good friend and someone is willing to do the research, and not be so full of pride he can't pick up the phone and ask another doctor for additional information. 

Flalady

jeriss

Tonya,

I have a really good onc, however, like you and most everyone I got a second opinion. My second op agreed with my onc. Dr. Dekker, offered me four options for treatment, 1. TAC, 2. TC, 3. AC-T, 4. FEC+T. He preferred TC or AC-T but left the choice up to me. After much research, I decided on TC. I read two articles on TC adjuvant chemo being superior for operable breast cancer, you might want to review those articles at www.medscape.com/viewarticle/519565 or professional.cancerconsultants.com. Also, there is Johns Hopkins breast cancer forum, "Ask the Expert".  I pray you will find the answer that will put you at ease...hang in there.

Jeris

Tonya36

I appreciate all the replies.  Sorry to be so late in getting back to you but I have kind of just been getting ready for everything to start and trying to get my mind where it needs to be.  I spoke with my local onc on Monday about my visit with Duke.  He was very receptive to what I had to say and actually spent close to an hour with me.  His attitude was totally different this time and I was impressed with him and his demeanor.  He admitted that there wasn't any proof on the Taxotere/Carboplatin and that there are studies going on right now.  They will not have proof for probably 4-6 more years on how well it will do with TN cancer.  He is hoping for the best and he has seen it work along with the Herceptin on the Her2 neu girls so they are hoping it will work as well with us but no real proof yet.  I showed him the article given to me by Duke about Taxol weekly being better and less toxic than the Taxotere weekly and he knew they lady that did the study and was impressed.  He wanted to keep it and follow up on it.  I made the decision to go ahead with the EC x4 and T x12.  My mother and father both had heart problems and the heart damage scares me.  He says the Epirubicin is not that much higher than the Adriamycin and the efficacy of the two drugs is the same.  He told me it was my choice as to which I wanted and I went for the least heart damage.  I hope it is correct.  It is hard having no control but that is what I have had to face the past few days.  I don't know the future and all I can do is pray this is correct.  Bottom line is whatever God wants to happen will happen no matter which choice I make so I can only do what I think is right and let him have the rest.

 All that being said I had my first tx yesterday.  I didn't have any reactions.  It was slow I was there from 0930 til 2:30.  They had to give me iron because I am slightly anemic and he wants that nipped in the bud now.  I will have iron every week from here on out to try to not get transfusions.  I did ask him about the procrit making the cancer grow and he doesn't seem to think there are enough studies on it yet and he still uses it but he told me if I am uncomfortable with it then we will just do transfusions.  Its my choice.  He is just there to make sure I have as easy a time as possible and to try and make me well.  I was impressed.  He actually came through the chemo room yesterday and approached me about the Duke article and said it brought some things to his attention and he thinks he will start using Taxol more.  He thanked me for my research.  Very nice I thought.  Anyway, the chemo nurses were great and it went much smoother than I thought.  I got home and took a nap and woke up very nauseas.  Ate some soup and just stayed queasy for a few hours.  Nausea started again and I ate a baked potato and back to queasy.  I went to sleep and slept from 10:00 til 4:00 and woke up feeling great.  I went back today for my Neulasta and was told that I may be in bed for the next 3 days with flu like symptoms but I am hoping for the best.  I know it will kick in soon but hopefully not too bad yet.  I thank you all for your replies and hope to talk to you all soon.  Hope everyone is doing well.  Flalady I think of you often.  You have been very sweet to me.  God bless you all.

Tonya

FloridaLady

Tonya,

What a lovely report of your experience.  God is in control right off the bat...a great doctor who will listen to you.  Now that you have a great start with him, and one who will respect you and knows you are going to be involved every step of the way. I'm so happy for you!  Make him your friend...I'm not kidding, if they like you they are more involved in your treatment.  I know this is hard to believe, but I found it true... more than once.

Try different foods during and after chemo. (The days should get shorter...the first one they put it in slower to see how you respond.)  It helped me to drink chocolate milk.  I think it helped coat the stomach.  I have been lucky...never once had nausea. I eat during chemo and go to lunch after chemo. I know your tired after a long chemo day, but try and stay up for a few hours after chemo.  I have found it helps...not sure why.  My thought is it gives it time to move through your system and keeps the lungs clear longer.  I found if I laid down when I got home, I would get fluid in my lungs and my voice would get horse.  I also felt a little queasy.  I'm hyper even right after chemo because of the steroids.  I hope you got something to help you sleep, you will probably need it.  Also have a stash of pain meds just in case.  Also remember to watch your temperature that it does not go to high.  God Bless and pray each treatment goes easier for you.

Flalady

jeriss

Hi Tonya,

I am happy to hear that you made your decision and have made it through your first treatment...that's one down! I pray God continues to keep you strong during this process. Great research also, it is important that we become as knowledgeable as possible without making ourselves crazy, it also will help someone else in the same predicament.

I have had no serious side effects to date with the exception of insomnia, I cannot get to sleep! Yesterday my doctor prescribed Ambien but it didn't work...oh well, if that is all I have to worry about I thank God. Again, thanks for the update, we will survive!

Hugs and Blessings,

Jeris

jason222

Hi Tonya,

My mum is currently going through the same treatment plan as yours.
She is currently on AC x 4 and Taxol x 12 (but with carboplatin) as well.

I also tried to ask around in the board and did some research,and the AC dose dense and weekly taxol seems to be a good protocol for the triple negative. You may also want to consider asking your oncologist about adding carboplatin during the taxol treatment too since he wanted to use carboplatin initially. Just a thought.