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341 - 360 of 365 Comments Last updated Aug 21, 2013

Since: Dec 12

Clearwater, FL

#366 Dec 15, 2012
CLEARLY chemotherapy works. According to this, I have a 94% chance of survival. That's really good odds for such a devastating illness -- worth, frankly, thinner hair and eyelashes.

http://www.biosciencetechnology.com/news/2012...
babes

Athens, Greece

#367 Dec 16, 2012
[For patients with ER-positive disease, five-year disease-free survival was 70 percent for those who received chemotherapy versus 69 percent for those who did not
this is from your link...
what about the secondary cancers ,leukemia etc.due to chemotherapy?

Circulating tumor cells predicted recurrence, death in patients with early-stage breast cancer

Fri, 2010-12-10 11:41

by
EurekAlert

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SAN ANTONIO The presence of one to four circulating tumor cells (CTCs) in the blood of early-stage breast cancer patients almost doubled patient's risk of cancer relapse and death, and five or more CTCs increased recurrence by 400 percent and death by 300 percent, according to Phase III results of the SUCCESS trial. These cells were found in patients after surgery but before chemotherapy treatment.

Results of this study were presented at the 33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium, held Dec. 8-12, 2010, and demonstrate the value of CTCs in early breast cancer, independent of estrogen-receptor or HER2 status and before use of adjuvant therapy.

The benefit of using CTCs to predict risk for recurrence and death in metastatic breast cancer patients has been shown in a number of studies, and use of a CTC test in metastatic breast cancer has been approved by the Food and Drug Administration.

The CTCs found in this study are likely evidence that a tumor is shedding breast cancer cells, said lead researcher Brigitte Rack, M.D., head of the department of gynecological oncology at the Women's Hospital at the University of Munich, Germany. "The CTCs might have been released from the primary tumor before these patients underwent surgery, and the expression of stem cell markers on disseminated tumors cells has been shown by several groups."

Survival of these CTCs after chemotherapy further suggests they are cancer stem cells, Rack added.

Researchers with this study are testing the effectiveness of two different chemotherapy regimens and extended adjuvant bisphosphonate treatment in early breast cancer. SUCCESS' efficacy data are expected to be released next year.

Results of this study showed that 21.5 percent of patients had one or more CTC in their blood before the start of adjuvant treatment. These patients were more frequently node-positive, but no other linkage could be made with tumor size or grade or HER2 status.

Breast cancer recurred in 114 patients, and 66 patients died. Being CTC-positive was a significant independent predictor for both disease-free and overall survival. Patients with one to four CTCs had an 88 percent increased risk of early breast cancer recurrence and a 91 percent increased risk of death from breast cancer, according to Rack.

Prognosis was worse in patients with five or more CTCs; these patients had a fourfold risk of cancer recurrence and a threefold risk for death from the disease.

"Our study suggests testing CTCs may prove to be important to help individualize therapy for early-stage breast cancer where no measurable tumor is present," she said. "Patients who seem to be at high risk due to CTC may benefit from additional treatment options, and those that don't have CTCs may be spared side effects of some treatments."

She added, however, that prospectively randomized trials are necessary to show an improvement of survival based on CTC diagnostics. Trials testing this notion are either ongoing or about to start in Europe and the United States, according to Rack.

Since: Dec 12

Clearwater, FL

#368 Dec 16, 2012
Actually it's circulating CELLS, not tumors, and it increases the liklihood of a spread but is not a guarantee. Just because the cell is in the bloodstream does not mean it will find a home.

In addition, looking at circulating cells ignores the more common mode of spread, which is lymph nodes.

while there are increased risks of other cancers from chemotherapy, those risks are low. And the 70% and 69% survival rates were for those with RECURRENT cancer, not someone like me who had non-recurrent. For someone like me, localized and non-recurring, the survival rate for hormone-positive cancer was a stunning (to me) 94%. Mine was also herceptin-sensitive, so that complicates it some. We know Herceptin increases survival rates, but they don't yet have the long-term statistics on survival for that. So mine isn't simple, and nothing is as simple as you explained it.

And, by the way, I personally knew a wonderful woman who survived the breast cancer only to develop lymphoma, possibly (but not guaranteed, as you surely know) from the chemotherapy.

It's an EDUCATED gamble I took. We don't know everything there is to know yet about any of the breast cancers ("breast cancer" is a type of disease, not a disease itself), so we do the best we can.

And, for those who don't know, research studies will ALWAYS end with a call for more research. There is a *rational* and *important* reason for this. If anyone wants me to explain I will, but I will wait for a (polite) invitation to do so first. It's actually important knowledge that IMO all who have to make decisions based on research should know.
babes

Athens, Greece

#369 Dec 17, 2012
"It's an EDUCATED gamble I took. We don't know everything there is to know yet about any of the breast cancers ("breast cancer" is a type of disease, not a disease itself), so we do the best we can."
I agree with this Charlotte and I wish all the best to all of us..
Gail Perry

Tampa, FL

#370 Dec 17, 2012
Babes, I really think that two hundred years from now people will shake their heads in wonder at the ways we had to treat breast cancer, but there are new discoveries every day. I think it was only a year ago that they found stem cells in breast cancer, and now they can analyze them.
A couple of years ago they discovered that it's important to sample larger lumps in several places because one part might be benign while another part is cancerous. I know someone that happened to, and fortunately, her surgeon knew that research was "in the works." She was only 38, but he sampled that lump in three places, and by doing so, he saved her life.
Now they've recently found out that a tumor can be "triple negative" but contain some hormone-positive cells, which may explain how some triple negative cancer suddenly turns positive. They've found that some people with triple negative may still benefit from the miracle non-chemo treatment of the century so far -- Herceptin.
There's still so much to learn. We can only act based on the information we have. I am sure you know this, but for others, your oncologist has something you won't have -- the big picture of *all* the research. He or she will know how one individual study fits into that larger picture, and he or she won't make recommendations based on just one piece of research.
That's why I couldn't give the woman who kept "jumping" me one cite. One cite is useless without the larger picture.
So is one test. Don't assume your cancer is going to spread based on circulating cells. Those cells most often lodge in the bones. If you keep your bones strong, they either won't get in, or won't find a place weak enough to develop in. Strong bones means a significantly smaller risk of your cancer spreading to your bones -- and that's the place it's most likely to spread to. That's why they often use Zometa or other bone-strengthening drug as part of breast cancer treatment.

Since: Dec 12

Clearwater, FL

#371 Dec 20, 2012
Look at this: they've found Herceptin-sensitive stem cells in supposedly triple-negative tumor tissue:

http://www.medilexicon.com/medicalnews.php...

In other cases they have found hormone-sensitive stem cells in supposedly triple-negative tumor tissue.

I say again PLEASE DO NOT MAKE MEDICAL DECISIONS BASED ON WHAT YOU FIND ONLINE. Our oncologists have actually known about this research long before it was published. They have their own, advanced pipeline and know about the likely results of groundbreaking research before it gets down to the rest of us. Not once but twice the fact that my oncologist had that information, I got treatment before most people -- including his highly trained oncology nurses -- knew. He gets this stuff on CD's and listens to it on his drive to work. He is constantly gathering new information.

This means that MORE of us will receive MORE information.

That means MORE side effects.

This is how it is. And, we are NOT going to change all the oncologists out there. Some of them will still withhold information about side effects in the hope that we won't experience them and will have the needed treatment.

That means WE must ask. We MUST insist on ALL the information -- including what prompted this thread -- that it is a FACT that hair does not always grow back, and does not always grow back completely.

The side effects can be devastating, but we are going to have to pull up our big girl panties and weigh the risk vs the benefits. That's just how it is.

The research I just linked up there is actually GOOD news for women with triple negative cancer. It means there may be more treatment options. Maybe the death rate for that very common form of breast cancer will actually go down.

But some people have very significant side effects from Herceptin or the other treatment, Tykirb. I received Herceptin and I did not. However, I did from AI's -- side effects that were really tough to deal with. But I know other women who did not react that way.

We can't know ahead of time, and right now all we can do is play the odds -- BUT YOU DO THAT BEST BY INSISTING ON ALL THE INFORMATION. If your doctor doesn't trust you with that -- get a second opinion.
choko

Aurora, CO

#372 Dec 20, 2012
Charlotte Schmidt wrote:
Look at this: they've found Herceptin-sensitive stem cells in supposedly triple-negative tumor tissue:
http://www.medilexicon.com/medicalnews.php...
In other cases they have found hormone-sensitive stem cells in supposedly triple-negative tumor tissue.
I say again PLEASE DO NOT MAKE MEDICAL DECISIONS BASED ON WHAT YOU FIND ONLINE. Our oncologists have actually known about this research long before it was published. They have their own, advanced pipeline and know about the likely results of groundbreaking research before it gets down to the rest of us. Not once but twice the fact that my oncologist had that information, I got treatment before most people -- including his highly trained oncology nurses -- knew. He gets this stuff on CD's and listens to it on his drive to work. He is constantly gathering new information.
This means that MORE of us will receive MORE information.
That means MORE side effects.
This is how it is. And, we are NOT going to change all the oncologists out there. Some of them will still withhold information about side effects in the hope that we won't experience them and will have the needed treatment.
That means WE must ask. We MUST insist on ALL the information -- including what prompted this thread -- that it is a FACT that hair does not always grow back, and does not always grow back completely.
The side effects can be devastating, but we are going to have to pull up our big girl panties and weigh the risk vs the benefits. That's just how it is.
The research I just linked up there is actually GOOD news for women with triple negative cancer. It means there may be more treatment options. Maybe the death rate for that very common form of breast cancer will actually go down.
But some people have very significant side effects from Herceptin or the other treatment, Tykirb. I received Herceptin and I did not. However, I did from AI's -- side effects that were really tough to deal with. But I know other women who did not react that way.
We can't know ahead of time, and right now all we can do is play the odds -- BUT YOU DO THAT BEST BY INSISTING ON ALL THE INFORMATION. If your doctor doesn't trust you with that -- get a second opinion.
Thank you for the civil dialog;however, I believe that the majority of women on this forum HAVE pulled up their big girl panties. In fact, all the women on this forum pulled up their big girl panties when they were told their diagnosis, then braved and endured the medical treatment that they were prescribed.
It is more the issue of being informed of the possibility of permanent hair loss and being given the statistics of this devastating side effect so one could possibly opt for another course of treatment.
Thanks again.

Since: Dec 12

Clearwater, FL

#373 Dec 20, 2012
choko wrote:
<quoted text>
Thank you for the civil dialog;however, I believe that the majority of women on this forum HAVE pulled up their big girl panties. In fact, all the women on this forum pulled up their big girl panties when they were told their diagnosis, then braved and endured the medical treatment that they were prescribed.
It is more the issue of being informed of the possibility of permanent hair loss and being given the statistics of this devastating side effect so one could possibly opt for another course of treatment.
Thanks again.
I'm sorry, but at this point the hair thing is old news. It really IS time to get over it. I had side effects, serious ones, from another non-chemo treatment that wasn't in the literature ... yet. But I knew that treatments for cancer could have serious side effects, and I knew that anger would not take me to any good place.

My hair is thin. My eyelashes are very thing. But I'm alive and have good reason to expect to die of something other than breast cancer. If I hadn't been told this could happen, that would be the only thing that would have changed. I'd still be alive.

When I had taxotere, it WAS believed that permanent hair loss was rare. So nothing much would have changed for me. I just see no point in staying angry about it. Maybe it's a glass half full vs. empty thing.
choko

Aurora, CO

#374 Dec 20, 2012
Charlotte Schmidt wrote:
<quoted text>
I'm sorry, but at this point the hair thing is old news. It really IS time to get over it. I had side effects, serious ones, from another non-chemo treatment that wasn't in the literature ... yet. But I knew that treatments for cancer could have serious side effects, and I knew that anger would not take me to any good place.
My hair is thin. My eyelashes are very thing. But I'm alive and have good reason to expect to die of something other than breast cancer. If I hadn't been told this could happen, that would be the only thing that would have changed. I'd still be alive.
When I had taxotere, it WAS believed that permanent hair loss was rare. So nothing much would have changed for me. I just see no point in staying angry about it. Maybe it's a glass half full vs. empty thing.

Well...it is not old for me...maybe it is for you. Being given the CHOICE is what makes the difference. You are entitled to your opinion, as everyone is. Just dont tell me or ANY woman to pull up big girl panties when they feel a certain animosity about not being informed and not being given a choice of treatment that would decrease chances of permanent hair loss.
Additionally, ALL women on this forum are glad to be alive...that is a given.
Again, thank you for your response.
Gail Perry

Clearwater, FL

#375 Dec 21, 2012
choko wrote:
<quoted text>
Well...it is not old for me...maybe it is for you. Being given the CHOICE is what makes the difference. You are entitled to your opinion, as everyone is. Just dont tell me or ANY woman to pull up big girl panties when they feel a certain animosity about not being informed and not being given a choice of treatment that would decrease chances of permanent hair loss.
Additionally, ALL women on this forum are glad to be alive...that is a given.
Again, thank you for your response.
Sorry, but it's called "free speech" and I'll say what I think. You are so busy getting angry at EVERYONE who either doesn't say what you want them to say or who doesn't say it exactly as you thought you should that any discussion turns into a bickerfest.

You're angry. That's the core thing, and *then* you find things to blame your anger on -- you didn't have things explained to you (it really was in the literature I was given, and the doctor mentioned it also), and you're so busy getting angry at people here that you don't notice that I have experienced the problem you're hollering about also.

You weren't "offered" a choice? No, your doctor made what he or she thought was the best recommendation to you. I have posted this before: the answer is to get a second opinion, which has been standard medical advice for at least fifty years. My doctor actually recommended taxol, not taxotere, but I got on line and rapidly found out that taxol was more likely to cause neuropathy than taxotere. Since I have CP, that could have been very serious for me. I got a second opinion, which confirmed that taxotere was less likely to cause neuropathy.

Nevertheless, after the 11th of 12 treatments I noticed neuropathy in the front quarter of my foot -- big toe and a significant surrounding area. I refused the 12th treatment. I told the doctor he would have to show me the research demonstrating that 5 months plus one week of chemo was more effective than five months, and effective enough to risk more neuropathy.

His NURSES were very upset that I declined treatment, but he was not. I think part of the problem is that too often, treatment is managed by (highly trained in my case) nurses. They're still nurses, not doctors. None of them mentioned listening to CD's of new and promising research that hadn't been published yet, what my doctor did.

But I got to choose taxotere over taxol because I was an active part of planning my treatment. I listened to what the doctor said; I learned to double check everything the nurses told me. They were very often wrong, and that's the truth.

It can be very hard to be this proactive when you're staring down cancer. I know that. If you can't do it, you need to bring an advocate with you.

You always had the choice. But getting angry doesn't give one power. It causes people to dismiss that angry person as difficult to work with.

I acted as an advocate for a friend who was going through a very difficult and dangerous pregnancy. It was absolutely remarkable the things she seemed to hear but did not afterwards. Her baby was checked for EVERYTHING in detailed ultrasounds, including, at about six months gestation, heart defects -- a very detailed and specialized ultrasound. They happily told them that her heart was fine and reminded her that they had found nothing wrong with the baby at all.

At lunch afterwards, she said -- what did they say about her heart? I don't remember.

People don't want to hear that they're part of the problem, but when anger takes over, you're part of your own problem.

Since: Dec 12

Saint Louis, MO

#377 Dec 23, 2012
Wow. That was just really ugly.
Reyze

Saint Joseph, MO

#378 Jan 27, 2013
Shirley, I have permanent hair loss also from taxotore. If there is a class action lawsuit I would like to join it.
carolyn lynch

Lynchburg, TN

#379 May 5, 2013
I took taxotere 3 years ago, 6 treatments, left mastectomy,lemph nodes removed, I could not take femura, I have severe pain in my feet and legs, my eyelashes have not grown back enough, my hair which was thick is now very thin and barely covers my head, if given the choice again I would not take chemo, I do not know if the surgery was enough to save my life or not, but the way I feel now is not much of a life anyway.
carolyn lynch

Lynchburg, TN

#380 May 5, 2013
I was told there was a possibility I would lose my hair, but that it would grow back, it hasn't, it is a weird color, spotty, but at least it doesn't hurt like it did during treatment, but my toenails hurt, and my fingernails.

Since: Feb 10

Clearwater, FL

#381 May 9, 2013
Sometimes your hair comes in a different color, or curly where it used to be straight.

Mine came in curlier than it had been as an adult, almost as curly as it was as a child (and that was *extremely* curly).

So if it's just coming in, give it time. Mine came in BLACK at first, and I'm a natural blonde. The black part stayed black and I just had it cut off.
Shelley

Euless, TX

#382 May 25, 2013
I've just had a scalp biopsy performed this past week. I took Taxotere and I am now suffering with hair not growing back. The dermatologist that I went to told me he sees people all the time with this exact same problem. Commo, denominator=Taxotere.

Since: Feb 10

Clearwater, FL

#383 May 27, 2013
Shelley wrote:
I've just had a scalp biopsy performed this past week. I took Taxotere and I am now suffering with hair not growing back. The dermatologist that I went to told me he sees people all the time with this exact same problem. Commo, denominator=Taxotere.
I took Taxotere because it was less likely to cause permanant neurological damage. I already was born with cerebral palsy and didn't need any more. My hair is thinner, but while I had transient numbness in my feet (I refused the last treatment beause of that), it was still the best choice for me.

Are you taking AI's? They very significantly affected me, keeping the hair from growing back. So I reallyl don't know which is to blame now -- the Taxotere or the AI's.
marta_hungary

Szolnok, Hungary

#384 Jun 22, 2013
Hi Shirley
I read your artical in DailyMail, I have the same problem, after 3 years of TAC Chemoth (received in 2010) and I'm still suffering permanent hairloss.
I would like to join to you and know the latest findigs in these topic.
bozokimarta@gmail.com
best
Marta from Hungary
(56 y. old)
shirley wrote:
Hi Elaine, we are a large group of ladies suffering with problem. If you would like to joing our emiling list so you can keep up to date with what we are finding out!!! and other research please email me and i can add you. The group is growing in numbers by the day.
I understand completely how you feel.
shirleyledlie@hotmail.com
hope to hear from you and anyone else with this problem.
Lisa Dumaine

Winnipeg, Canada

#385 Jul 25, 2013
I was given Docetaxal in 2010 and finished my treatment in December of that year. I was NEVER told about the potential for permanent hair loss and the irony is that in January of 2011, they found another tumour in my other breast. So, not only did the chemo fail completely, but the medical system CHOSE not to disclose vital information that should have been my right to receive. After 3 years I have a very thin covering of hair all over my head that was hard won ... to say the least. To make a long story short I found a naturopath that does blood contrast work and found out that the chemo was still in my body 1 1/2 years later (sitting on top of my kidneys and liver). I was also extremely anaemic and incapable of properly digesting nutrients. I had to detox and am taking many supplements. It's growing now and although I have a long way to go before I can go hatless again, I have hope. If anyone is interested in hearing how I was able to get my hair back (and hopefully a lot more to come), I would gladly give details.
Lastly, if anyone writing in this blog does not truly understand the heartache and shock of finding out you will never be truly the same again, be kind. This is devastating and this kind of betrayal (and yes, I said betrayal), lasts a lifetime.
babes

Athens, Greece

#386 Jul 26, 2013
Dear Lisa,
I totally agree with your statement that if anyone writing doew not understand the heartache and shock of finding out you will never be the same again...be kind...
This betrayal should not be continued.Every woman should be entitled to a written consent mentioning every single side-effect of the drugs used for chemo.
All this about how important it is to be alive..is of no use when it comes to the respect one should have of the personality of an individual and of the importance of being given the freedom of choice.
I did not suffer from hair loss although I took Taxotere but I thing you should share this information about getting your hair back with us.
I simply took some vitamin B supplements..that was all I did.
Love and respect to every one in this blog who understands how devastating the whole thing can be for an individual..

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