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lroppe
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Topic: Taxol versus AC?? Posted: Dec 27 2008 at 3:59pm |
Hello Sisters!
This coming week, I will do my fourth and FINAL installment of the AC cocktail. YAY! Woohoo!! If I were drinking, I'd pop champagne! Let's do that again: WOOHOO!!! Next, I will move on to four rounds of Taxol every two weeks. (No woohoo for that.) Has anyone had experience with Taxol, particularly in comparison to AC? I just want to know what's coming. My doc (whom I loooooooooooove) says Taxol is not as bad as AC but let's face it, he's never personally had the chemo. I'd like to know the scoop from my warrior sisters who've been there! Anyone have any words of wisdom for me? Happy New Year to all. May we all have new strength and good news in the coming year. OXOXOXOX Laura
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Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation
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trip2
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Posted: Dec 27 2008 at 4:36pm |
Hi Laura
Well I am sure you have heard this before but we are all different. My daughter worked thru Taxol and barely complained. Me on the other hand had alot of bone pain in my legs.
I'm sure the other gals will jump in, it is just hard to say.
Good luck to you,
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Stage 2 2003
Stage 1 2007
BRCA 1+
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ziggy0
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Joined: Dec 21 2008
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Points: 75
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Posted: Dec 27 2008 at 4:45pm |
Hi Laura. I'm Jackie (ziggy0) from Boulder, Colorado. I too had AC and then Taxol. Unlike you I had not had a lumpectomy first--I had neoadjuvant therapy before surgery as the lump was too close to the muscle. The tumor responded wonderfully (much better than I) to the AC and by the end of that treatment was invisible to the touch.
The following is something your doctor should know. Perhaps he or she still has the tumor and can test it. Because while I was on Taxol my tumor came back. It had had no prior exposure, yet by the third of 12 planned weekly treatments I felt a ball-bearing sized, hard lump right where the other tumor had been. Unconvinced, my oncologist said we'd 'keep an eye on it'. By the next week, after the Taxol infusion, his PA ordered an ultrasound, and that confirmed that the rapidly enlarging tumor was indeed back.
Had I had a lumpectomy prior, we would not have known that I was not responding to the Taxol. Can your oncologist test to see if your tumor is responsive to Taxol? I think this is very important.
BTW, although the Taxol treatment was not effective, its side effects were in full force. Although I felt much better than when on AC I lost the remainder of my body hair, a few fingernails turned yellow, and a couple of them are likely going to separate from the nail bed and come off. These side effects are variable, but there is no reason to undergo them unless your tumor is responsive to Taxol. This was my experience only, of course, but as most Taxol treatment is done adjuvantly (after surgery), who knows how many instances of resistance go unnoticed? Best of luck to you, Laura, and please for your own sake try very hard to have that checked.
--jackie
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Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks
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ziggy0
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Posted: Dec 27 2008 at 4:50pm |
Postscript, Laura. I am currently on gemcitabine/carboplatin days 1 and 8, still neoadjuvantly, and the tumor seems to be responding to that, getting smaller and softer. (Whew.) I will have the lumpectomy, probably, early next year.
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Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks
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Lauriejn
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Posted: Dec 27 2008 at 5:04pm |
Hi Laura. I'm currently on Taxol (w/Avastin) and have had only indigestion as the complaint. The joint pain Pam wrote about is common and the ONC nurses recommended I take glutamine (10 grams/3x daily for 3 days- begin 1 day after tx and 100 mg vit B6 3x/day and motrin continually to counter the pain)
Good luck! Laurie
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Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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lroppe
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Posted: Dec 27 2008 at 6:56pm |
Thank you Pam and Jackie for your replies - the women on this site are so prompt and helpful, as always. Jackie, I am so so sorry that your tumor came back. That is so hard, so awful. I can see why you are not a fan of Taxol. My doc took out my lump totally and completely with clear margins before chemo (and one lymph node was positive with .22 mm). The tissue is no longer available. The upside is, according to me (and this is not verifiable, of course, and sheerly positive thinking), I tell myself everyday that the surgery took out the cancer completely, and chemo is just insurance. On the other hand, if there were any rogue cells out there floating around and planning a party in there after surgery, there is no way to know if the chemo is working. That's really scary. I really don't have anything to do but do the most rigorous treatment I can (mainly for peace of mind so I never wonder what if), and then just see what happens. My doctor (who is a sweetheart) looked me in the eye once when I was weepy and he said "Listen to me, Laura. We are going to cure you. You are going to do this and move on, and never look back. You will raise your daughters, and never do this again." I know he's not capable of this guarantee, and certainly that is not the doctor in him talking, that was the cheerleader, but I've decided that he is right and that's what I've got to believe, or else this whole chemo journey is just so unpleasant. So, I feel I really must forge ahead with the Taxol. The truth is, the docs don't know what the heck works or not, for sure, do they, they are just going on statistics. Scary. One thing I will do at the next appointment, though, is I am going to grill him on the efficacy of Taxol, and why he's recommending it, and why we are going through this second chapter. I feel a renewed commitment to get more info, so I truly do appreciate your post, Jackie. Thank you so very much. Pam, thank you for the heads up, and as you say, I must always remember that we are all so different. But it's still good to know others' experience, I feel forewarned is forearmed. I wish you all the best. XO Laura
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Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation
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lroppe
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Posted: Dec 27 2008 at 6:57pm |
Jackie, Just read your post script! That is fantastic news! I am THRILLED to hear your tumor is responding. WONDERFUL! :-)
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Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation
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cweed
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Posted: Dec 28 2008 at 6:53am |
Hi Laura,
Taxol was definitely easier for me (I had AC too). It is different though, a couple of days of leg/bone aches that after a few treatments is predictible in your schedule. Also, I went through times where everything tasted like metal ... so I was eating cake and I said, "why bother?" I'm taking in calories and I'm only getting texture, not the great taste of chocolate!"
In all, it was easier for me than the AC, but I did know I was still in treatment. No nausea for me, just a bit achy.
Go get 'em! You're on the home stretch.
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Cathy, Winter Park FL
Dx 12/05
3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b
Double mast
AC+T, dose dense
radiation
NED!!
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ziggy0
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Posted: Dec 28 2008 at 8:59am |
Hey Laura--After I posted last night I had some second thoughts, hoping I had not sounded too hysterically against Taxol. Just because it did not work for me does not mean that it won't for you, and I certainly was not meaning to throw a scare into anyone--We've all had enough of those, I'm sure. After all, a well-respected oncology doctor here in Colorado told me that 90% of tumors (whether or not they're TN I don't know) respond to Taxol.
But even if he did mean that 90% of TNBCs respond to Taxol I would have to wonder what they are basing that statistic on, since the vast majority of tumors are removed before chemo with Taxol and, as in your case, most are either not available for testing or will not be tested (if there is a test) for responsiveness. In other words if they base that statistic only on the ones that they know for sure did respond but in fact in most cases they don't really know, then how often are early recurrences actually enabled by resistance to one or more adjuvant chemo drugs?
I have to wonder why more chemo is not done neoadjuvantly, so that we can see a response. I realize that a lot of women just want to get that cancer cut out of them as fast as possible, but it is really nice to know that the orange-black invader is getting pummeled by the stuff that also pummels me!
Of course by not having the lumpectomy when the tumor returned under Taxol I was also taking the chance that progression would continue unabated under gemcitabine/carboplatin. There just aren't many easy answers.
Best to you, Laura.
--jackie
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Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks
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GodsGirl35
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Posted: Dec 28 2008 at 9:52am |
Hi Cathy,
I noticed you live in Winter Park, Florida. I live in Winter Garden. I just finished Chemo and have my sirgery in 11 days-I have elcted to do a bilateral masectomy. Then i have radiation. I have been researching my diagnosis and I have become highly concerned with reoccurrance. I was fine until this past month when I began not feeling like th etaxol was doing what it was supposed to since I didnt have really bad pain or side effects. What is it that you do or know that helps calm you and not worry. I am a single mom of a 10 and 7 year old and so want to be around for my kids.
Thanks for your time,
Tisha
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daffodil
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Posted: Dec 28 2008 at 11:48am |
Hi Laura,
This is my first posting as I have just registered. I am from Australia and had a lumpectomy in 2006 followed by AC, radiation and then moved on to Taxol.
Like you I was told that it was easier to cope with than AC, however, this was not so. I was to have Taxol once a week over 12 weeks but managed only two lots.
After the second lot I developed a rash from head to toe and started to have heart palpitations.
As there was no lymph node involvement with my TNBC I decided in consultation with the doctors to cease the Taxol treatment. So far so good.
Regards
Daffodil
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cweed
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Posted: Dec 28 2008 at 2:06pm |
Hi Tisha,
Time helps with the worry, and it is definitely a process to get to where you accept that the worry not only doesn't help, it actually may hurt ... so for me I had to go through that cycle ... being worried that I was worried!
In time, I came to believe that I was doing everything I could to prevent recurrence and that was all I could do. You do get to a point where it isn't on your mind all the time ... but again, it takes time and it is a process.
As for not having bad side effects, my oncologist says it doesn't mean a thing. Just means you are fortunate and are your body is handling it well.
I'll separately look to private message you with my information locally. If you want to chat more before your surgery let me know.
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Cathy, Winter Park FL
Dx 12/05
3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b
Double mast
AC+T, dose dense
radiation
NED!!
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GodsGirl35
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Posted: Dec 28 2008 at 3:05pm |
Thanks Cathy, that would be great! Also, thanks for your time.
Tish
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trip2
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Posted: Dec 28 2008 at 4:11pm |
Hi Daffodil and welcome.
My gosh I am sorry to hear about that rash you had with the Taxol!
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Stage 2 2003
Stage 1 2007
BRCA 1+
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kirby
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Posted: Dec 28 2008 at 4:48pm |
Tish, Laura and some of you new ones out there,
I like to post on occasion to let you know some hope and positive stories. I was dx before they were doing neoadjuvant tx and before they figured out TN. I had only 4 tx of AC...that was protocol then...and it will be 8 years since I found my tumor, Jan. of 2001.
Tish, I too, was & still am a single parent and know the difficulties of remaining strong and keeping things normal for the kids. My youngest will graduate from high school this spring.
Good luck to you all.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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daffodil
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Posted: Dec 29 2008 at 12:03pm |
Hi Pam,
Thank you for the response. Yep the rash was pretty bad and itched for about two weeks.
The whole time of treatment seems like a blur and as though it was happening to someone else - I guess because I didn't have time to focus on me as I was the primary carer for my 87 year old mum who lived with me.
Mum passed away in August 2007 and I hit the wall of depression shortly thereafter.
After counselling I feel okay and now have time to focus on me. Glad I found this forum as it is very difficult to get any information about TNBC. Next time I visit my doctors I will be armed with questions based on what I am learning here.
Regards
Sandra
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Nancy
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Posted: Dec 29 2008 at 3:53pm |
Hi there Sandra,
Anoher gal from down under! We have a few gals on the site from Australia.
I am sorry to hear that you lost your mum. My mom was 87 when she passed in 2000. I can well see why you "hit the wall of depression".
We are glad that you have joined us, and there have been other gals who have had bad reactions to the Taxol. I remember when English Jan thought she was going to die while receiving the infusion. That's a pretty potent med. My daughter Lori had the Taxotere, and that was right along with the AC.
Have you checked out the TNBC News, Resouces & Tips forum? Pam posts links there every day which are so informative. You could have volumes of info and your doctors won't know what hit them next visit
They say that many docs are frequent visitors on this site, and are amazed at the dialogue of the women here Just wish they would post at times and tell us what they have leraned by reading
Please continue to post and I know that you will also have many suggestions for the new gals.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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ChrissieD
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Posted: Dec 30 2008 at 2:17pm |
Hi Laura -
I am a couple days ahead of you in treatment...I had my last AC yesterday and begin Taxol (X 4) in week after next. I was lucky to have minimal side effects from AC (hair - gone; fatigue - came to stay due to chemo and chemo induced Anemia). I have been told by all the nurses and 2 oncs in the office the side effects of taxol are differnt than AC. Specifically potential for allergic reaction the day of infusion (but there is decadron and lots of benedryl for that); bone pain following infusion; and it is likely I will lose my eyebrows and eyelashes (although this could happen after the 4th treatment). Some say maybe not as they have not even thinned with AC. I am also seeing a naturopath who gave me a supplement to try to counteract the possible neuropathy (?) which can be caused by Taxol too. He reasured though with the 4 infusions it is not likely to stick around even if it developes during treatment. The nurses suggested B vitamins so I am going to start taking those as well.
I found with AC the fear leading up to treatment was not nearly what the treatment was - scary yes, but I am strong and can make it through.
You mentioned questioning whether you need Taxol - I went to Dana Farber for a 2nd opinion. I am stage I but tnbc is aggressive and I wanted to be sure that I was doing everything I could to be done with this cancer thing and living to a ripe old age. ACX4 with TaxolX4 was what the onc there told me was the protocol for neoadjuvant treatment. My onc told me the same thing when I first saw him too. I was told it was the big gun protocol to ensure any floating micromets left and did not find a home. Do your research and talk with your doctor and be comfortable with the treatment plan.
Best of luck to you. Here is to hoping Taxol is gentle and doable for us both!!
Chrissie
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39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3
ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09
God is carrying me through !
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lroppe
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Posted: Dec 30 2008 at 9:47pm |
Hi Chrissie,
Wow, we are really on the same path, aren't we!? Not only are we twins in chemo, my kids are also 6 and 8.5 years old! I am technically a Stage II but the 1 lymph node with cancer was .22 mm -- considered a micrometastasis. Still, it's a lymph positive, but it's just about as small a positive lymph node as you can find. So, can we still be twins?!
Congrats on your last AC! I hope you are feeling ok today. I get my infusions on Thursdays and Saturdays are actually the hardest day for me. So, I am sending you healing vibes for the next few days. We shall see about the Taxol. I will do it, I trust my doc is giving me the best advice available, but I just am getting fatigued with this whole thing. Even though I will be possibly having new side effects, maybe the change of scenery so to speak will at least lessen the emotion fatigue. As far as physical fatigue, I, too, have been hit hard due to chemo-induced anemia. I have my last AC tomorrow and will find out before infusion how bad the anemia has gotten re my counts. Hopefully, if it's really low, the problem can be solved with an injection and that's that.
I struggled to defeat acute nausea with AC. It was just a constant battle, even with the Emend and all sorts of other "premium" drugs. I am hopeful that nausea is not on the menu with Taxol.
I too lost my hair on AC but my eyebrows and eyelashes have stuck around. I am bracing for their departure with Taxol, but you never know. Chrissie, I am sure hoping we don't have any sort of allergic reaction. That would be a bummer. I am sending you my biggest hug.
Despite the whining in this post (which on rare occasion feels nice to do), I too feel like I am very strong and can handle this. I have learned new strength through this whole experience, and I know I can move mountains. I know you can, too. I just won't necessarily sing "The hills are alive with the sound of music . . ." while I am moving those mountains!! Occasionally, I just get cranky. But I always move forward and I am typically in good spirits. I am glad to see you have discovered this perseverance as well.
I hope you will keep me posted by PM or post about your Taxol experience, and please know that I am rooting you on.
Much love,
Laura
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Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation
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mainsailset
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Posted: Dec 31 2008 at 7:34am |
I started off with Taxol 1x a week and boosted with Sutent pill form daily in Sept. Finished 4 weeks ago and have now had 3 AC treatments.
As we all find out, the side effects don't all arrive on day one but keep layering on day after day, subtle sometimes and life threatening others.
Yep, I got the rash, named it after my ex-brother in law and it too went away.
Other side effects were loose joints, but no pain, lots of sinus issues with bloody nose etc., lots of heartburn, elevated BP, eyesight impaired and eyes were running all the time, neuropathy...couldn't eat anything and lost 30 lbs. My tumor after 6 weeks had shrunk from a hard mass to a soft mass that was only 44% of it's original size. Important to note that my tumor was growing like a weed in spring so I have to give credit to the Taxol/Sutent that they not only stopped the growth but reversed it.
AC seems to be a different beast. My onc gave me almost 10 days off to recuperate inbetween the Tax & AC. That was certainly a good choice. My Most of the T/Sutent side effects have left town.
So far what has changed with the AC is that I only urinate at night, had bouts of constipation even though I'm drinking 3 qts of water a day. It has impacted my blood counts, anemic, low on white, low on Protein and calcium. After only 3 treatments I can't give a full AC account but I am so far finding it easier to tolerate.
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