Chemo or No Chemo?
Comments
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Kathy....I just sent you a PM
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Thanks, Sheila. I sent you a Reply in PM.
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KATHY Here is your previous post with all the links updated:
An hour ago KathyS7 wrote:
Okay, I think I've got it. See if you can read these:
http://www.sciencedaily.com/releases/2010/02/100223132017.htm
http://erc.endocrinology-journals.org/content/16/4/1091.full#T2
http://weill.cornell.edu/news/releases/nyp_health/nyp_health_2006/estrogen-receptor-status-.shtml
http://www.doctorslounge.com/index.php/articles/page/297
http://www.ncbi.nlm.nih.gov/pubmed/21472434
http://jnci.oxfordjournals.org/content/89/22/1652.full
I found this info from a chat room participant:
Chemo vs No Chemo w/Oncotype Score of 21
LeesaAnn, it's true we all have to get as much info as possible and make the decision of chemo or no chemo and hopefully live with that decision..My onco score was 21 and after doing a lot of research about chemo benefit vs side effects from chemo, I decided no chemo...On the websiteOncotypedx.com...the below info under the tab "Managed Care Organizations" then go to Unmet Need In Early-Stage Breast Cancer..the info I copied below helped me make my decision...But please get all your own info to make your decision...For each patient, this benefit must be weighed against the risk of adverse events. Chemotherapy-related adverse events occur in almost all patients and more than 1 in 10 women experience a serious or life-threatening event.4 Between 1 in 100 to 1 in 500 women actually die from side effects related to the administration of chemotherapy. Late adverse effects of chemotherapy also occur, including development of second primary cancers in more than 1 in 20 women and cognitive dysfunction, or so-called "chemo-fog." Other adverse effects include ovarian failure, cardio-toxicity, nausea and hair loss. As Paik et al. concluded, "the likelihood of 10-year distant recurrence in patients treated with tamoxifen alone is about 15%, at least 85% of patients would be over-treated with chemotherapy if it were offered to everyone."2
Here's the full article referred to:
http://www.oncotypedx.com/en-US/Breast/ManagedCareOrgs/UnmetNeed.aspxhttp://www.lef.org/magazine/mag98/jan-feature98.htm?source=search&key=death%20from%20chemotherapy
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Kathy - PR status is not a significant prognostic indicator. As far as medical science is currently aware PR status does not impact upon treatment options or mortality. I am treated at one of the best teaching hospitals in the UK and they don't even bother to test tumours for PR status anymore.
In all honesty I am staggered that anyone with locally advanced cancer is even questioning having chemotherapy.
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Thank you, Linda! I have sent a technical request into breastcancer.org to see if they can help. I'm just simply not getting the same options as everyone else. But this really helps.
There are two more articles at the bottom that could use the underline. The last article is one of the most compelling to me.
Thanks for all your help!
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On a lighter topic -
Does anyone have any thoughts on whether or not coffee is bad for cancer?
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Kathy - I am a coffee lover. I think it's fine
. In moderation. I can't do more than 1 cup of caffeinated since it keeps me awake but I get a water-processed decaf from Jeremiah's Pick that is very tasty! I think the research out there has gone both ways. -
I drink one big cup a day. I don't think it's a problem.
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Oh, good. I love coffee, too. I think moderation is the key. We girls gotta have something to get us through this! Thanks!
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Kathy ~ I just wanted to say I applaud you for doing your research, asking questions, and searching for opinions.
You appear to be well aware of the risks of not taking chemo...and the risks of taking chemo. Only you can determine which side of the fence you want to jump over to.
Since you sound like you have decided not to do chemo, I just wanted to offer support. Nothing is guaranteed with BC ....you could do chemo and still end up Stage IV.
If you (and your onc) feel that the AI's are the best weapon in your particular case, then go for it and don't ever look back.

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Kathy, I do not have the energy to read all your links. But I browsed several of them. Some deal with chemos other than taxols and they do not necessarily say that chemo "doesn't work." One says, for example, that neo-adjuvant chemo won't always get a complete response in ER+ cancers. However, less than "complete" can still be very good. My ER+, lobular tumor went from 5cm+ to a few milimeters by 1.2cm with neo-adjuvant chemo.
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Susan - Thank you so much for an alternative response. In this daunting sea of information, it's always nice to recieve a compliment and at least get an "A" for effort!
Momine - Thanks for the good news about chemo working on your lobular! What chemo did your MO give to you? We seem to be very similar in diagnosis.
And thanks to everyone for helping so much! I am actually starting to lean more towards the chemo now, after hearing from all of you.
Although I can't respond to each individual's every comment, please know that I am taking in every word and thought behind it. I cannot express how much this means to me.
Some of you are so incredibly bright for seeing into all the details and pointing out things that have just eluded me. There is no way to measure the value of all your caring comments, but they each create a thread leading me to a path I can choose and live with, no matter what the outcome.
Hopefully, I will have some very good news to bring back after my "second opinion" visit to one of the nation's top 1% MO's this coming Tuesday. My husband and I will be travelling to Ohio State University's James Cancer Center to see a top research oncologist. I'd like to ask him what he knows of Taxol and ER+ as a mix. He ought to know.
I will give you a full report. Love and hugs, Kathy



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Kathy, I had 4 treatments with FEC before surgery and 4 taxoteres after surgery. It is extremely difficult for me to think that my up to date onc, who is certified both here and in the US would put me through the taxotere for no reason. Especially since it seems to be pretty common treatment.
What I don't know and maybe someone here does, is whether there is a difference between taxotere and taxol. -
Momine - Thanks for the update. I would have to agree with you that they must have their reasons for what they prescribe for each of us.
I believe that Taxol and Taxotere are considered part of the same taxane family.
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Taxol is derived from th bark of yew trees in the Pacific Northwest (OR, WA, BC). Taxotere is derived from the Eurpoean yew.
I'm ER+ and I did Taxol after surgery. -
Momine and Kicks - Did either of you have neuropathy?
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I had no neuropathy.
I did start having problems keeping my K (potassium) level up in the normal rqange about !/2 way through Taxol. It's still a 'probblem' now but K pills take care of it. -
Yea!!! Any other side effects?
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Kathy, I did have some neuropathy. Mostly in my fingertips. I still have a tiny bit, 3 months later. but it is decreasing and comes and goes anyway. I am able to knit and sew, cook etc. I had a bunch of other fun SEs, but most just lasted a few days. I am not going to try to kid you that chemo is fun. It is probably one of the more difficult things I have done in my life. Still, it was six months ( I had 8 TXs) and now it is over.
Also, I managed to take long walks almost all the way through, I saw friends, went out to dinners with my dh, went to Paris, studied, did some work etc. My life was not perfect, but I did have a life. -
Momine - Thanks. That sounds both realistic and promising.
Did anybody lose their nails?
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Kathy...I also had 4 DD Taxol...
After the last treatment my toes were tingling but not numb....... few days later it was gone.
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I was completely and utterly exhausted on Taxol - basically existed on the couch in front of TV. BUT Hubby and Son took over all house and barn care so I didn't have to do anything so I didn't.
Did not loose nails though they didin't look that great but OPI Nail Envy kept them together. Well I did loose 1/2 of one big toe nail as it turned black while on A/C but Dr T insisted I had injured it - not chemo. He was probably right - I first noticed it after I had run a Powder Puff Mud Bog which was 2 days after 2nd A/C. -
Kathy, my nails got discolored ( brown spots) and one of the toenails still looks pretty gnarly. However, none has fallen off and the discolored stuff on the finger nails has grown out already. Some people do lose nails, but I did not, mmy mother did not afer six taxotere TXs and my aunt's nails also stayed on through six taxoteres.
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Kathy - I had 4 servings of dose dense Taxol and did not get neuropathy, and I am a diabetic so I'm a bit more susceptible to it. I used Acetyl L-carnitine, L Glutamine and Vit B6 to prevent it. There are clinical trials underway using Acetyl L-carnitine to prevent neuropathy from Taxanes. And I had no problems with my nails, other than they were soft for a few months. I think Taxotere is harder on nails than Taxol.
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LuvRVing - I think your situation is also similar to mine. I appreciate learning of your experience and how you handled it with the help of supplements. What was the worst part of it for you?
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Kathy - I think the anticipation was worse than the rest of the process, to be honest. I had worked up in my mind that I would find chemo absolutely debilitating, and that it would trash me completely. Yet I knew I had to do it (remember, I passed on it the first time around). Looking back, I think the worst was some fatigue and not feeling quite up to par. Yet, I never felt so bad that I stayed away from family and friends. I had treatment on Wednesdays and we went out to eat every Friday night, just as we've always done. We had family, including the grandkids, over every weekend including the weekends right after treatments. I didn't wait on them - they took care of themselves. But it was so great to have them around. My appetite was not great and I lost about 5 pounds, not a big deal.
I was extremely diligent about drinking 96 ounces of fluids (including soups, juicy fruits and veggies, popsicles, etc) each and every day. I really think that made a huge difference.
There is a pill for almost every side effect except fatigue and hair loss. I accepted that I needed the help and took whatever would keep me comfortable. I knew it was only for a while.
I mentioned this before but it was a few pages earlier in this thread. I have been keeping a blog and there are pictures of my journey, including getting the first dose of Adriamycin. You can find more information about my chemo journey at:
http://www.mch-breastcancer.blogspot.com/
Also, I highly recommend you read one of the past monthly chemo discussion threads. It will be very helpful for you to read about the whole experience and how people fared. If you want to read the ones that track my chemo, here are the names of the threads:
June 2011 A/C & T Groupies Unite!
Jun 2011 chemo
Both of these can be found under the forum: Chemotherapy - Before, During and After
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Kathy - I just wanted to put my two cents worth in, too. I had lumpectomy prior to chemo as my tumor was only 1.9cm. I was first diagnosed with Stage IIb because of lymph node involvement. During my pre-chemo scans it was discovered I had lung mets so I became stage IV from the get go. I just finished 6 rounds of Taxotere, Carboplatin and Herceptin. After my 3rd treatment I had a repeat scan that showed my largest met (1cm) had shrunk by over half (4mm) and the small ones have disappeared! I am ER+ and PR+. I have another scan this coming week to see what the next step is. The decision is yours of course, but I am proof that Taxanes do work on ER+ breast cancer!
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I was on weekly taxol per MDAnderson protocol. And it wasn't bad at all. I started Acetyl L Carnatine and L-glutamine and a multivitamin at week 5 (could have started earlier). I have no neuropathy and my nails were just fine. I lost hair up until week 6 and then it stopped falling out and started growing back. i would say I had 40% hair density on the weekly taxol. Taxol wasn't bad, except for the tiredness. I was still able to keep up with my toddler (though a little slower) on the taxol. No nausea, vomitting, diahrea... ect. Goo dluck with the decision, you have lots of support here.
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Oh, wow! You ladies just take my breath away!
LuvRVing - You are amazing! I love to read your posts. You are such an example for us all. I am just so glad you have unselfishly devoted your time to this thread. You are helping me to see things from a whole new perspective.
Kelloggs - Yea!!! Taxanes have worked on you!! And you are here to tell the story! Thank you for your "two cents". Quite valuable, I'd say!
MiniMacsMom - Love, love, love to hear your story. I decided even if you're stretching the truth for me (which I know you are not), I still love hearing your story! Those are the thoughts I'd like to go into this with. Thank you!
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KathyS7--could you expand upon and explain your reference to treatment in Germany? "Of course, there's Germany." I would love to hear more about it.
Let me second all of the other ladies above who have said that Taxol is doable. I did 4 DD Taxol and had minimal SEs. I had some strange and annoying nerve pains in my legs for 3-4 days after, but that's about it. Oh, and my nails turned grey on Christmas Day and then cleared up. For awhile, it looked like 2 or 3 nails were going to lift away from the bed, but they did not. My final chemo was 1/11/2012, and all effects are gone. I feel terrific, and I've had BMX and 2 weeks of radiation since then.
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