Need help with Chemo...

katfinn · April 2011

Hello,

I'm new to this site and have lots of questions but my immidate question is: What type of chemo do you think I should have? I'd love to hear from both women who were recently diagnosed and those that have made it for years. (my doc told me that Avastin was just taken off the market by the FDA)

I had a lumpetomy last month - Triple Negative (although we are still waiting for the FISH teast to be sure on the HER2 status) - stage 1 - sentinel lymph node was cancer free - Grade 2/3 and the tumor was 1.3 cm (one margin was very small 1 mm).

I was originally told that I would only need radiation but now chemo is in order. I saw two oncologists last week. One wants 3 months of Taxotere and Cytoxan while the other wants 3 months of Adriamycin and Cytoxan but he would like me to continue with both for antoher 3 months and add Pacitaxel for the second half of the treatments.

I realized that these docs simply go to the NCCN web site to get their Rx. I guess I thought they would come up with a specific chemo cocktail just for me. So does everyone get pretty much the same drugs until they see how you react to them? I can see that there are several other adjuvant regimens listed on the NCCN site. Do they pull from them if you have side effects?

What did your doc prescribe and how are you doing today?

Also has anyone investigated the ISCA (International Strategic Cancer Alliance)? I'm guessing that our docs wouldn't support this and it is expensive but they provide the type of treatment that I thought all cancer patients received. They provide you with a caretaker who helps you sort through all the different doctors information before you make any big decisions. They also order many more specific blood and tumor tests to determine what your cancer will react to before they prescribe toxic drugs. They are not simply "alternative" from what I can tell but incorporate natural treatments along with chemical drugs and chemo.

I was surprized when a doctor from the ISCA actually returned my call and asked me to send him my pathology report. I probably won't go this route as I don't want to have any regrets but it does sound logical. I think that Suzanne Somers talks about this place in her book (which probably turns most of our docs off).

I appreciate any help you can provide. And please list the names of your drugs as I am having trouble figuring out what the abbreviations mean. Embarassed

Thanks so much. This is a great venue for help!

christina1961 · April 2011

I can't offer any advice or any long term results yet! and I am at least a stage 2 - tumor was 2.6 cm, possibly node involvement but did not show up on MRI or ultrasound - I am doing chemo prior to surgery and am receiving Epirubicin (we are out of Adriamycin here due to shortage), Cytoxan, and Taxotere. I am getting treatments every 21 days for a total of 7 treatments. So far the tumor has shrunk in response to the two treatments so far. I see the oncologist tomorrow and will know how much more it shrunk.

I went to two different doctors prior to treatment - both highly respected in my mid-size city - one was going to do Cytoxan and Taxotere every 21 days x 6 and the one I chose wanted to include the Epirubicin or Adriamycin. I am in good health, good cardiac function so I went with the stronger treatment. I am tolerating the treatment pretty well, working in between but taking about a week off following each treatment.

Good luck with your decision - whatever decision you make will be the right one for you. It sounds like you are very proactive and that is great!! <Hugs>

Danni1 · April 2011

I have IBC and I'm triple negative. Other than the cancer, I am in good health and had a cardiac function test. I had a 21 day cycle of adriamycin and cytoxan for several months last spring and then in the summer switched to taxol for a few months. I had a bilateral mastectomy in Sept and radiation in Oct and Nov. They thought they got it all and then in January found that it had spread to some of my lymph nodes. I am now on gemcitabine, carboplatin and a trial drug called iniparib. I just had a CT scan and I met with the oncolgist this Tuesday to see if this new chemo is working.

I went with the stronger treatment (the ACT) the first time around too. I was able to work everyday except chemo day and sometimes the day after. They have really good drugs to help you deal with the side effects. You will loose your hair with these drugs but it comes back fairly quickly. However, you have to be in good health in the first place before you can take them. The GCI treatment I am on now is much easier on me and I won't loose my hair. I don't know how effective they are yet and I don't know if they are letting any new people on the Iniparib. Just know that you will make the right decision and take the best drugs for you. I'll be sending positive thoughts your way.

Wiosna · April 2011

This is what I just wrote on a stage IV thread.

I had 3 cycles of FEC for first diagnosis that had no result or side effects whatsoever except hair falling out. With the recurrence I'm now doing six cycles of Carboplatin and Taxotere (I went to NYC and found an onc there who recommended this - New Zealand onc said it was only used for ovarian cancer).

The first cycle worked really well for the inflammation. The next two cycles didn't seem to do anything but the fourth cycle worked again. Surgeon jumped in at this stage and I'm now recovering from mastectomy and skin graft and having final two chemo's. It's not much fun.

I don't know what will work for you but I do know that in the States they have a lot more drugs to choose from than in NZ where I live. Get a few opinions and then go with your gut, it's the best we can do!

Luah · April 2011

katfinn: Sorry you have to be here, but you will find lots of ideas and inspriation on this forum. One thing, though, is none of us is your doctor, nor do we walk in your shoes, so it's pretty tough (and not really helpful or appropriate) to advise you on what chemo regimen.

What I can say is that both AC-T and TC regimes are commonly used for triple negative. I think most women here would consider the first to be a more aggressive approach, but TC is very effective and appropriate for certain pathologies (smaller tumours, lower grade, no node involvement). Adriamyacin can be hard on the heart, so for some women that is a consideration. Ask your oncs very penetrating questions about why they are recommending the regime -- ask them about the risks and benefits -- and why they recommend it over another... then see how you feel about it. Good luck.

Did your surgeon say anything about further surgey to improve the narrow margin? In my case, it wasn't possible because the tumour was deep and my BS had taken all she could, so I had pretty intense rads to compensate. Something else to ask about...

katfinn · April 2011

Thank you ladies. I feel that I have a much better understanding of my choices now. I met with my gyno today and she was helpful. She too was concerned about the A/C treatment because of the heart implications. I did ask that onc why he wanted to use the A/C and T combo but he just said that he had better results with it. I'm hoping that T/C will be enough for me although I know that it has other side effects. I'm concerned about my fingers as my job keeps me on a computer all day.

Do they ever add Taxol to the T/C treatment?

She wants me to see another onc to see what he/she suggests. She also wants me to feel confident with someone and I really didn't feel good about either of the other oncs.

I wish you all the best on your journey!

dawn31337 · April 2011

To say your oncologist simply went to NCCN to determine your treatment is insulting. To ask patients what chemo is right, is frankly shortsighted and irresponsible. The people on these boards are *patients* - we have by and large not been to medical school. Your best prospect is to consult medical professionals and not make your decisions based on the experience of other patients - although that certainly gives you some ideas of questions to ask.

I had 4 rounds of dose dense AC followed by 4 rounds of dose dense Taxol. IMHO Suzanne Somers is a flake and has no business giving medical advice. Sharing her experiences is fine, and if you choose to listen to a lay person rather than a doctor, that's also fine, but seriously questionable in my book. We survivors who have lived through this have every right to share our experiences, but that doesn't make us doctors. It seems to me you are new to this and new to these boards. Beware of patients who believe they are doctors, and there are plenty of them. Get 2nd and 3rd MEDICAL opinions and use what you have learned on these boards to ask questions of actual professionals.

Nordy · April 2011

Dawn - you do have a point (several actually)... but maybe a little harsh for katfinn who is new here and quite possibly very overwhelmed with everything?

katfinn - Most experienced oncologists do not just look up a regimen on a website. Good MD's are that way because they have developed critical thinking and logic somewhere along the way. They know from their past experiences with different medications what has worked for their patients. Sure, the NCCN may have a guideline... so does MD Anderson - and that may be a jumping off point for some MD's, but please don't think that their ability to make decisions stops there. An important thing to remember, is although we may all have the same diagnosis of triple negative - we are not all the same. Who knows why some people respond to one type of treatment while others don't. Oncotype testing may help take some of the guess work out of things, but other than that, your MD's have to go by what has been successful for them in their practice. If you are concerned about the conflicting treatments - it is time for a third opinion. Maybe the third oncologist will recommend the same treatment program as one of the other two... and that may help make your decision easier. Dawn is right in that we are not MD's on this board. We cannot and SHOULD NOT be telling you what type of chemo to have. We can share our experiences with chemo and what did or did not work for us... but that is not to say that that particular treatment program would (or would not) work for you. Please keep researching your suggested treatment protocols and discuss all your concerns with your MD. Then pick the MD and protocol that you feel will be in your best interest. Good luck and hang in there.

yellowdoglady · April 2011

Welcome, Sweetie!

I took six rounds of Taxotare and Cytoxin at three week intervals, then 35 shots of radiation. I'm two and a half years out from diagnosis and just came up clean on a PET/CT, so things are looking up. Like many, my family history would not permit the A thing, but I was told that it is very harsh and the benefits are small compared to the risk if you have anything going on there.

Just be sure that you can talk to your oncologist and get what will serve you best. Most of us with TNBC respond very well to chemo and go on to live happily ever after. Get some nice head scarves or some temporary hair if you want that. Get some family and friends on board to lend a hand around the house or sit with you during treatment. It isn't the worst thing you will ever do, but it is a challenge. Just remember that hair grows back and usually cancer does not. You may be tired and you may not want to eat at times. So get a lot of sleep when you need it and stock up on things you like to eat that are not much trouble to prepare. I worked through it all with a day off here and there, but that varies from person to person. Some, like me, want to keep things normal above all else. Others like to focus on rest and healing. There is no right or wrong answer here. Just see what feels right for you and then hold to your chemo schedule if at all possible.

Good luck to you! And remember that most of us do just fine if we do our work to get rid of that beastie.

poptart · April 2011

Do they ever add Taxol to the T/C treatment?

The T is Taxotere, another taxane like Taxol.

I had dose dense AC+T (8 cycles 2 weeks a part). I also had a heart function test before starting adriamycin. I had my chemo a few years ago. I think I have read somewhere that doing the T before AC has better results. I was node negative and had a mastectomy, small amount of invasive cancer, but I did have a close margin (1 mm) close to some dcis that was in the mix. I had 36 radiation treatments, im, chest wall, axilla.

Here is the study below - you may want to ask the doctor about it. I know some people do TC for early stage triple negative as well. I have even heard of carboplatin being used in early stage tnbc. Isn't carboplatin what is used in her2+ bc?

Chemotherapy Sequence Affects Early Breast Cancer Outcomes

Elsevier Global Medical News. 2011 Jan 7, B Jancin

SAN ANTONIO (EGMN) - The sequence in which paclitaxel and anthracyclines are given for treatment of early breast cancer makes a big difference in long-term outcomes.

That's the conclusion reached in what is believed to be the largest-ever retrospective study of the clinical impact of the sequencing of taxanes and anthracyclines. The study involved 3,010 early breast cancer patients who were treated during 1994-2009 and entered into the prospective online database at the University of Texas M.D. Anderson Cancer Center, Houston.

The clear winner was paclitaxel, followed by anthracycline-based therapy with 5-fluorouracil, doxorubicin (Adriamycin), and cyclophosphamide or 5-fluorouracil, epirubicin, and cyclophosphamide, Dr. Ricardo H. Alvarez reported at the San Antonio Breast Cancer Symposium.

Starting with paclitaxel rather than an anthracycline-first regimen led to better long-term results in the settings of adjuvant chemotherapy and primary systemic (or neoadjuvant) therapy.

The adjuvant chemotherapy analysis included 1,596 women, three-quarters of whom received paclitaxel followed by anthracyclines. The 5-year relapse-free survival rate with this regimen was 88.8%, compared with 79.5% when anthracyclines were followed by paclitaxel. The 10-year relapse-free survival rates were 81.8% and 73.5%, respectively.

Five-year overall survival was 93.1% with paclitaxel followed by anthracyclines, compared with 83.2% for the reverse. The 10-year overall survival rates were 83.9% and 65.6%, respectively.

In a multivariate analysis that was stratified for potential confounders, including age, clinical stage, hormone receptor status, tumor grade, and era of diagnosis, the anthracyclines-first sequence was associated with a 67% increased risk of relapse (P less than .0001) and a 2.5-fold greater risk of mortality (P = .001), according to Dr. Alvarez, a medical oncologist at M.D. Anderson.

Among 1,414 patients who underwent neoadjuvant therapy, the 5-year relapse-free survival rate was 79.0% with the paclitaxel-first regimen vs. 61.2% with the anthracyclines-first regimen. Ten-year relapse-free survival occurred in 61.7% and 50.5%, respectively, of these patients.

Overall survival was 84.2% and 66.2% at 5 and 10 years, respectively, in patients who received paclitaxel followed by anthracyclines, compared with 71.3% and 53.4% in those who got anthracyclines first.

In a multivariate analysis, the anthracyclines-followed-by-paclitaxel sequence of neoadjuvant chemotherapy was associated with an adjusted 49% higher risk of relapse (P = .01) and a nonsignificant 28% increase in risk of all-cause mortality (P = .17), compared with the paclitaxel-first strategy.

The mechanism that accounts for the increased efficacy of taxane-first regimens for treatment of breast cancer is unclear, according to Dr. Alvarez.

Nordy · April 2011

Poptart - thank you for supplying that study. When I was going through chemo - my MD did the Taxol first then the AC (he attends MD Anderson's symposiums every year and utilizes a lot of their protocol). My friend's brother-in-law is an onc at Sloan Kettering in NYC. At the time, he told me that they preferred to do AC first and follow it with Taxotere. I am SO, SO glad for my MD using the regimine he did!!! I also had a girlfriend (also TN) that was 5 years out at the time and her doc followed the exact same sequence as my doc was doing... so I thought that was a good sign!

Need help with Chemo...

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