need help w/ chemo info !!!!!

Melissa1971 · February 2009

Hi Ladies,

I went to see my medical oncologist for the first time yesterday. It was information overload. I need some help deciphering the info and making a decision about joining a clinical trial I qualify for.

I am TN, Stage 1, tumor was 1.8 cm and high grade, clean sentinal node and clear margins. I had a lumpectomy,I am 37 y.o

My onc, who came highly recommended said she can start my chemo next Friday (I was diagnosed about 4 weeks ago). Her suggested "chemo cocktail" is 6 cycles of

TC: docetaxel (Taxotere) and cyclophosphamide.

She also said I qualify for a national study w/ the closest participating hospital being about 2 hours from home...not really a big deal. The trial is divided into 3 groups and you either have to be node positive or high risk for reaccurance (me).

The trials Gold Standard is 4 cycles of AC and 12 weeks of T...this is for everyone, but another grouop would get that plusAvaston every 3 weeks for 4 cycles, and the third group would get the Avaston for an extended period.

I want to get started asap and need to make a decision over the weekend. Please share any infornation that you may have.

I need to call my onc. and ask more questions that have come up. For instance..why is her chemo regimin different that the base study?

Thanks for your help!

FloridaLady · February 2009

Welcome Melissa,

I do find it odd your doctor is not giving you "A" with her chemo combo. Most of us (90% in the US) get this on the first round. If she would give you this outside of the trial. The question would be only about the Avastin. A little easier choice to make. For Avastin... there just isn't enough information right now to tell if it helps early stage bc patients. This has been in trial for only a year or so in larger studies. Avastin does not have major side effects for most people, so I would not be afraid to doing this trial.

I would ask her your question of why she is so different. If she will not give you A... I would consider the trial. I don't think her protocol is aggressive enough. Just my thoughts...I hope you find the answer soon so you can start treatment and get it behind you.

Flalady

Mimsi · February 2009

Melissa,

I had TC only for triple negative from 11-07 to 2-08. I had the same size tumor you did but it was very agressive (Grade 3 on nucleus growth, mitachrondia division, and one other as well as 9 on a scale of 1-9 on invasiveness). My doctor told me my particular tumor had a really nasty biology. She had a study at the time that 2000 triple negatives were being enrolled in. It matched TC against TAC . The smaller studies that led to this study indicated that TC could be just as effective for triple negatives as the TAC without the risk to the heart. She said she gave me dense dose (more each time) and it was on a 3 week cycle of 4 administrations. This was to kill any cells that may have strayed into my blood stream. The real risk for me and for you as well is for it to invade liver, lung, bone or brain. She said it took over a million cells to "see" the tumor on a scan so we needed to kill any stray cells. I feel good about the regimen that I went under. I did lots of research on this. One of the well known triple negative researchers (Lisa Carey from UNC) reviewed my doctors recommendations and concurred. One doctor at Duke said she might not give me chemo at all so I did not go back to her!
I think TC would be fine. The Avastin is something that I was told had not yet (last year) been tried on early stage triple negatives, but was to be soon. I don't know the results for that.

VickiG · February 2009

Are you sure it's TC and not TAC that your onc is suggesting? My first go-round I had 6 cycles of TAC.

Mimsi, next wk I'm meeting w/ Dr. Carey! Hoping to come away w/ new ideas for my future txs.

Melissa1971 · February 2009

Well I have done a lot of research since that appt. and I did speak to my onc. about my findings.

We changed my regimin from the original (posted earlier) to AC and Taxon. I will now be getting dose dense treatments every 2 weeks . AC for the first 8 weeks and then the T for the last 8 weeks. I asked her why she didn't suggest this originally and she said because it can cause heart issues but since my tumor was on my right breast and there would be any radiation on y left it shouldn't be a problem. I am somewhat concerned that she wasn't being so aggressive initially THIS IS MY LIFE!!!!!!!!! She is supposed to be the top breast cancer onc. in town. I am seeing another onc. on Tuesday for a second opinion.

debk55 · February 2009

Hi Melissa,

I too am TN and my tumor was bigger and my nodes were clear I had a mastectomy with great margins. I decided to do the trial as I wanted to do every possible upfront to stop a reoccurance if possible. The Avastin has not been proven to help in early stage but, I did not want to learn in 1-2 years that is was helpful and I did not do the trial given the chance. I think it is a personal choice but my onc did reccomend that I think about it seriously due to me being TN. But, He did say it is a trial and there is no proof yet that it will help. And I have had only some sinus issues with the (?avastin/placebo) and I do not know yet i am getting it or not, I should find out in 3 weeks I think I am due to the sinus issues. I would do the trial again but that is just my personal choice. You do get more infusions but the Taxol is weekly and not as hard as the every 2 weeks.

Good Luck with your decision & whatever you decide will be right for you, Deb:)

Melissa1971 · February 2009

Deb,

Where are you doing the trial? I would be going to IU (Indianapolis). Do you think that you are getting more attention going through a trail. Are they doing more scans/ bloodwork, etc. because of the data that they are keeping? I need to make this decision asap. I am just so overwhelmed with everything. My doctor wasn't pushing me in any direction re the study.

debk55 · February 2009

Melissa,

I do have a clinicail trial nurse that is following me along with my onc. She asks alot of questions every week but I don't know if the onc would ask the same if she was not there. They did do an echo at the end of A/C to see if any heart damage with it & that is paid for by the study as it is not usually done. I think that that is the only extra test other than the blood work before each chemo which is normal before chemo. I think they follow you more after the study but not sure about that as the onc did not say how he would follow me if not in the study.

I am going to St Joseph Hosp in Ann Arbor and it is about 1 1/2 hour drive for me I hope this helps. There is a thread for this study it is in the Help me get thru treatment section and the listing is E5103 trial. It is 1 month longer on chemo but as I said I think the weekly taxols are easier on you and after 6 taxols my hair is growing some.I have a friend who had the taxols every 2 weeks and hers did not start to grow til 6-8 weeksafter her taxol stopped and she had alot more SE from the taxol than I have had. But, that could be just different people reacting differently.

Again good luck with you decision Deb

FloridaLady · February 2009

I did not get any more test while in my drug trial...actually they did less of them at MDA Houston while I was there. They told me a PET scan had NO value in research???? So I would come home and have my regular oncologist run my reports. The told me the a ultra sound was a stupid device that had know value??? The hand could shake and change the report??? These are the tools they still track my disease with and so far been right every time.

I did get a earing test because the drug was known too damage hearing. And it did. I think it depends on who is doing the trial and what stage the trial level is on. I was Phase I and they only worried about how damaging the drug was not if it helped me.

You do get a chance to ask all this questions before you sign up for the trial.

Flalady

need help w/ chemo info !!!!!

Comments

Categories