Has there been any update at all on this study since 2007? I am scheduled to begin taxol and will not if it is truly ineffective in my type of cancer. I would appreciate any assistance with this question so very much.
I've looked for an update disputing this information, but can't find anything - which doesn't mean updated information isn't out there somewhere - simply that I didn't find anything. Take a look at this Web page from Komen for the Cure Web site; it cites that 2007 info. and not sure if it's an update (despite the page heading of "latest headlines.") I'd at least print out this article and bring it to your oncologist; see what s/he says, OK? Sorry I can't be of better help to you here - PJH
Thank you so much for your quick reply. Now, what would you do, knowing this information about that study, if you were hormone positive and her 2 negative, had a mastectomy because the cancer was muti-centric with one positive node,stage 2B, had the A/C part of the ACT, and scheduled for 12 weekly doses of taxol? Would you take the taxol?
1) Remember, I'm not a doctor; no medical training, so this is personal opinion.
2) I'd ask my oncologist what he thinks of the study;
3) I'd Google around and see if there's any updated information;
4) I'd ask if the Oncotype DX test is a possibility at this point, to help decide;
5) I'd ask my oncologist how much my recurrence risk would be lowered by doing taxol. 3%? 6%? 1%?
6) Then I'd go with my gut, and NEVER LOOK BACK. No second guessing. Taxol apparently isn't nearly as challenging as what you've already been through; many women describe it as a "piece of cake" after AC. However, it does come with the risk of neuropathy in the hands and feet, which many women find incredibly annoying... I know, tough decision. And only you can make it. Best of luck- PJH
I ha breast cancer 7 years ago and had a lumpectomy,chemo and radiation. I attended annual check ups and on my 6th year expected an "all clear" and discharge but the Gynocolist discovered thatI had an ovarian cancer with metastesies in my liver lung, and pelvic bones and it took 47 weekly infusions of Taxol and 2 of Carboplatinum to get my cancers into a stable condition- that is no activity and no more secondaries. I had all of the usual side effects including pins and needles in my feet and fingers and also loss of sensation in my toes, feet and fingers. It is now 11 weeks since my last chemo and my body is recovering but I still can't walk without my rollater or use my fingerstips, I don't know if they will ever recover but I am still alive and would like to stay that way for as long as I can. If I had known how severe the side effects were going to be would I still have accepted the treatment? The answer is " Yes" and I intend to make the best of my suitation. I am also taking complementary therapy- Vitamen B complex, Essiac Tea and various other herbs and vitamens to try to help my body and prevent the cancer from becoming active again.
It's good to hear that despite this new cancer, the treatments have worked. Trouble with nerve damage in the hands and feet is not unusual after Taxol, but it gets better with time for many. The B vitamins you are taking are often prescribed for nerve damage. Check with your doctors to be sure the dosages are appropriate for you. Some people find that exercise like walking or knitting helps the nerve pain. I wish you the best as you move on with your recovery.
I am currently struggling with whether or not to pursue 4 rounds of Taxol following 4 rounds of AC treatment. My tumor is < 1 cm, Stage IIB, Grade 1 with 1/11 lymph nodes showing 2.5 mm. My Estrogen and Progesterone receptivity is high -- 90+%. I have one more round of AC to go but when I broached foregoing the Taxol with my Oncologist she was not happy. I told her I had read the research on Taxol and I know that there are clinical studies currently recruiting women with my profile to study arms that do not provide chemotherapy but instead go right to radiation and Tamoxifen/AIs. I'm already concerned that I have done the AC when there is controversy about whether Adriamycin is even effect with HER-2 negative tumors. I'd rather stop the Taxol treatments and focus on lifestyle changes like losing weight and getting more exercise which have proved to be effective. I'm scheduled to go back and talk to her again in 2 weeks after the last AC but I'm really on the fence? Anyone else been in this scenario recently?
Tough one, Chris. Sorry you're having to make this decision. What it boils down to is, the data is in for how much extra protection the Taxol gives you, vs. AC alone. AC alone was the tried and true protocol up to a few years ago; Taxol is relatively new. So I'd think the data could be accessed, showing risk of recurrence with Taxol vs. without. And you're looking for absolute risk - not relative. Maybe the risk of recurrence without Taxol is 10% (I'm making this up); maybe with Taxol, it's 8%. That means the relative risk of recurrence with Taxol is 20% better than without. The ABSOLUTE difference in risk is only 2%. So make sure your oncologist is clear on that.
The other thing is, Taxol can come with lifelong side effects: neuropathy (pain/tingling in the hands and/or feet). It's not a given, but a significant percentage of women experience this. How much are you willing to risk in side effects for how much lowered recurrence risk? That's the question; and only you can answer it.
I've found docs are always willing to put us through the toughest treatments, those most likely to prevent recurrence; but they seem to have a hard time weighing the lasting side effects, and how they change your life. They figure, "Well,you're alive - isn't that good enough?" Yes, and... if the benefit of the particular drug was just 2%, I most probably would have been alive anyway, without the side effects.
As I said, tough decision. Do you feel lucky? Are you someone NOT into hindsight and second-guessing? Best of luck as you figure this out, and come on back here anytime you need to chat. We're here for you. PJH
Chris, I'm sure there must be data on how much adding Taxol to AC helps prevent recurrence. I'm in the first wave of non-metastatic patients who received Taxol. I'm pretty sure the studies that led to its FDA approval for non-metastatic use came out in 1998. As a person who believes Taxol was key to saving her life but who has neuropathy from it, I can sympathize with your decision. I wasn't eligible for any of the hormonal treatments, so Taxol was the way to go for me. You will want to run the numbers with your oncologist, but I think that because you have some other treatment options, skipping Taxol makes some sense. If part of your reason for skipping Taxol is that you have had lots of AC side effects, you should know that most people find Taxol easier to tolerate than AC.
Thank you PJ and Phyllis for offering your thoughts on my decision. I have had significant side effects with AC including 4 weeks of severe laryngitis and incapacitating Hand and Foot Syndrome (HFS) which has left three of my fingers without feeling -- I hope temporarily. I think getting HFS with AC is fairly unusual. Given that HFS is a noted SE of Taxol and it carries the potential for serious neuropathy coupled with the controversy about the benefits of Taxol for HR+ women, I think I've decided to finish the last round of AC next week and not pursue the Taxol. I did get a second opinion from an ONC who is older than my doc and has seen a lot of serious SEs over many years. He was much more concerned with my current SEs and concerned about what the Taxol might bring. Phyllis, if I were ER/PR- I would be thinking very differently about this decision. But I'm not -- and as we all know that has nothing to do with luck and everything to do with the nature of this disease. I feel good about my decision and eager to get into the next phase of treatment and better living. Thank you both again. I have really learned to treasure BC survivors like you who are so generous with their insights and wisdom.
Chris, for what it's worth - I would have made the same decision, in your shoes. In the 10 years since chemo, I've seen how it can affect your life permanently; and unless it was going to make a huge difference, I'd opt out - like you're doing. Best of luck to you - and I hope the path gets a little less rocky now... PJH
I just got taken off Taxol after half of my 12 scheduled weekly infusions plus Herceptin. I am HER-2/Neu, ER/PR +. I had terrible joint and bone pain, vision issues, neuropathy in hands and feet, lost 4 toenails, and have 8 fingernails that are raised from the nail beds and my onc said I will most likely lose them. I walk like a 90 year old woman, and I'm only 65. The neuropathy is getting worse, rather than better since stopping Taxol.
Now I've been told to start taking Arimidex daily for the next 5 years, and continue Herceptin once every 3 weeks for a total of 12 months. I have read of some horrifying accounts of permanent side effects from Arimidex and am very reluctant to start taking the samples given me 2 weeks ago.
If my side effects are compounded by adding Arimidex and it impacts my quality of life, I would much rather forego the Arimidex and deal with the cancer if it does recurr. I am not looking forward to being sick every day for the next 5 years just to be considered a "cancer survivor."
You and PJ have given me some excellent advice in the past, and I'm hoping you can help me work through this issue. My next appt. is in 6 days and I'd like to have all the info I can get before telling my onc I am not taking that stuff. I read it has gasoline and glycol in it. Why would I want to put gas or antifreeze in my body?
Misty, I took Arimidex for 5 years, and had minimal side effects; a bit of stiffness and minor pain in the morning which soon dissipated with normal exercise. The question is, with all the issues the Taxol has given you - if you start Arimidex now, how will you know what pains are coming from the chemo, and which (potentially) from the Arimidex?
If it were me, I'd wait a couple of months for the Taxol side effects to either disappear, or not disappear. If they go away, then when you start Arimidex you'll really be able to blame any new pain on this new drug. If the Taxol side effects remain, then it'll be more difficult to determine if Arimidex is precipitating any further pain.
As for whether to even give it a try - I would. Why dismiss it, with its ability to help prevent recurrence, without even trying it? Other peoples' experience won't be yours; we all have our own reactions (or non-reactions) to drugs. You may be lucky and not feel a thing from Arimidex - which you'd never know, unless you try it. If it does prove problematic, you can always stop taking it; but you will at least have had some extra protection in the interim. Good luck - tough decision, I know... PJH
Your suggestion to wait a little longer before starting Arimidex is pretty much what I've been thinking, myself. I want to get past the Taxol side effects first--if, of course, they're not permanent. I guess my big worry is that I'm more succeptable than some to experiencing side effects and was afraid I was asking for trouble with Arimidex. I had read all the bad stories, but nothing from women who had better experiences with Arimidex.
I'm willing to give it a try, but will decide later whether it's tolerable or not. I would like to get rid of the neuropathy first, if for no other reason than to give Arimidex a fair trial. I hope my onc will understand and work with me on this issue. I've come this far and would not want to just give up. I will be having the conversation I should have had two weeks ago when I go in again next week.
Thanks for your input. I really needed an unbiased opinion, and yours has given me hope that I can get through this. I was close to throwing in the towel, but your way makes more sense.
It helps to hash things out like this, Misty; to hear from someone outside your immediate situation. As I understand the statistics, about 20% of women have significant side effects from Arimidex; and, as always, you'll hear a LOT more from those 20% than from the 80% who do just fine on it. I'm glad you're willing to consider giving it a try.
And I hope the neuropathy abates; sometimes it takes quite awhile for that to happen, and for some women, a certain degree of neuropathy is permanent. I hope you DO get over it, and quickly.
I don't think there's such a thing as being "susceptible to side effects;" I think each drug you take will be a new scenario. So, hopefully, you'll be in that 80% of women who take an AI without it barely causing a ripple in their everyday life. Best wishes - PJH
Misty, I'm sorry that you are having so much trouble with neuropathy. You might want to read this article about neuropathy. I would recommend seeing a neurologist about the neuropathy. There are quite a few medications and vitamins that can help neuropathy, and a neurologist is the doctor with the expertise to help you choose the best one for you. For some Taxol patients, neuropathy is a short-lived problem that goes away on its own. I'm one of the people who still have it years later. It took me several years before I consulted a neurologist, and I wish I had done it right away.
As PJ says, there is no reason to think that because you had problems with Taxol, you would have trouble with Arimidex. You can give it a try and discontinue it if you have troublesome side effects.
Throughout this whole cancer ordeal, I've found your site to be the most helpful. A few months ago my computer crashed during a storm and I wasn't able to get to your site. Finally got the computer straightened out, but the link I had to your site was missing. I've been trying for almost three weeks to find your site again and finally found a response I had saved. I was almost panicky because I wanted to run this Arimidex issue by you.
That's how much I appreciate your site and the helpful input you've given me. Thanks for being there!
Thanks, Phyllis. I just read your article and the comments it generated. Wish I'd seen this sooner as it's very informative. I'm thankful that my onc pulled me off Taxol after 6 of 12 weeks because of too many side effects. I was glad to see that many women find the neuropathy to worsen after discontinuing Taxol because I'm having that issue now myself.
In addition to the neuropathy and nail loss, I also had developed a bad "rash" on my right leg. By the next week it had affected the other leg, too, and seemed to be getting worse. Then I got it on my face. My onc told me that this gets progressively worse and becomes a much darker red than mine was. When she discontinued my Taxol she prescribed a steroid for the rash, which cleared it up in about a week.
I've been thinking about making an appt. with my neurologist, whom I haven't seen in over 5 years. So glad you mentioned this and I am going to schedule an appointment ASAP.
Thanks so much for your input.
Have just finished 4 AC and had one T treatment. Had a rough time with it. Read your article and others noting that T is not effective for estrogen positive breast cancer and may even be dangerous neoadjuvantly. My tumor has shrunk so that it is not visible on ultrasound and we are waiting for MRI to go forward with surgery. I told my oncologist that I do not want to do any more T treatments. She said that I need to find another oncologist in that case. I was appalled. I am still having side effects form the treatment I have had, and still have a port in, and need some follow up care. I do not want to not have an oncologist, but cannot agree to any more chemo. What to do?
Delores, I'm surprised at your oncologist's attitude because ultimately she works for you. Please keep in mind that the date of the original article above is now four years old, so your oncologist may have new data not available at that time. It sounds like you need to have a heart-to-heart discussion with her about why she feels so strongly about your taking Taxol. She knows your medical history and should be up on the latest studies that apply to you. Perhaps she feels that if you don't have confidence in her suggestions, it is time to find a new doctor. If after she gives you all the reasons she thinks the Taxol is so crucial for your survival, you still want to skip it, then it is time to get a new oncologist--one who will support you in making your own decisions after you get all the information that applies to you.
hello there!
i was recently contacted for a reearch study on breast cancer as i was unable to participate and i thought to forward this info to ladies who may be interested. They are looking for ladies who have her2- and have taken or currently still taking taxol, taxotere, or abraxane. i have provided the contact and few details below. its pretty interesting, worth taking a look at.
Metastatic Breast Cancer research Study
New York NY and also Nationwide
60 min participation
All participants are paid an incentive $100-$150
elliottbenson.com
Hi - I'm trying to find out if this is legitimate; when I tried to click on links breastcancer.org and Komen had posted to it, they were broken - which makes me suspicious. So ladies, caveat emptor, but here's more complete information if you're interested - PJH
"We would like to invite patients of Metastatic Breast Cancer to participate in an important research study. It begins March 27th, 2012 and runs through April 10th, 2012. We are looking for patients who reside near New York, NY to participate in an in-person interview and patients who reside Nationwide to participate in telephone interviews. The research study will take approximately 60 minutes of your time. Each patient, who participates, will be provided an incentive in appreciation for their time and opinions. If you are interested, or know of anyone who may be interested, please contact Elliott Benson at 916.325.1670 or email invitation@elliottbenson.com. Elliott Benson is a Sacramento-based Market Research firm. For more information about our company, please visit our website at www.elliottbenson.com."
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PJH
Eight Breast Cancer Symptoms: When To Worry 
Ten Breast Cancer Myths Debunked 
Eat to Live: 10 Things to Know About Breast Cancer and Nutrition 
When Breast Cancer Returns: 10 Things to Know About Metastatic Breast Cancer 
The New England Journal of Medicine editorial comment made by Ann Moore of the Weill Cornell Medical College, could not have been stated with any more precision that the "one-size-fits-all" approach to breast cancer treatment is coming to an end, and should come to an end. Also, oncologists do have a responsibility to their patients to be aware of the University of Michigan report.
As we enter the era of "personalized" medicine, it is time to take a fresh look at how we evaluate treatments for cancer patients. More emphasis should be put on matching treatment to the patient. Patients would certainly have a better chance of success had their cancer been chemo-sensitive rather than chemo-resistant, where it is more apparent that chemotherapy improves the survival of patient, and where identifying the most effective chemotherapy would be more likely to improve survival.
The academic center-based oncologists are misguided in not recognizing that they continue to try and mate a notoriously heterogeneous disease into "one-size-fits-all" treatments. They predominately devote their clinical trial resources into trying to identify the best treatment for the "average" patient, in the face of evidence that this approach is non-productive. However, such unsuccessful experiments will never be viewed as such by the people whose careers are supported by these kinds of experiments.
The methods of cancer medicine during the last thirty some years are coming to haunt the "one-size-fits-all" establishment. Technologies, developed over the last twenty years by private researchers, hold the key to solving some of the problems confronting a healthcare system that is seeking ways to best allocate available resources while accomplishing the critical task of matching individual patients with the treatments most likely to benefit them.
Survival in metastatic breast cancer hasn't improved substantially in thirty years. Improvements in overall survival for all patients are owing largely to a marked trend for earlier diagnosis and surgical technique. Even this doesn't mean that many more patients are being cured. If you diagnose someone earlier in the course of disease, of course they'll live longer from the time of diagnosis. This is what's known as lead bias.
There have been truly minuscule improvements as a result of adjuvant chemotherapy and the net benefit to the community of breast cancer patients in the real world isn't all that clear. And the criticism remains: All of the clinical trials resources have gone toward driving a square peg (one size fits all chemotherapy) into a round hole (notoriously heterogeneous disease).