Anyone on just Taxotere and Cytoxan?
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Drea, I ended up on Taxotere & Cytoxan (which I've completed) at my request, basically. I had 4 treatments of TC, at 3-wk intervals. My last tx was June 4 '08.
My first onco wanted to give me Adriamycin & Cytoxan (AC). He said that almost automatically, and would not discuss any alternatives. I didn't dispute his recommendation that I get chemo. My 1.8 cm IDC was grade 2 and ER+ but PR- (and HER2-), but my Oncotype score was 26, which is at the upper end of the "intermediate risk" range. I did not have any positive nodes.
So, I had readied myself to the possibility that I would need chemo, but I was hoping there would be some justifications or rationalization given. I was concerned about some of the long-term cardiac effects of Adriamycin. I told my onco I had a heart valve problem and asked if he wanted to see my test results, but he brushed that off as "unimportant" without even looking at the results. He said there was no reason to use anything other than AC. I fired him a few days later, for a combination of factors involving communication skills.
My second onco also said AC was her first choice for me. I asked her about TC, because of my heart valve problem, and she asked for some details about the cardiac testing. She said she would want a MUGA or a repeat echocardiogram before starting the AC anyway, just to be sure. She mentioned there were a few other cardiac issues that would make her more inclined to choose TC instead of AC. It turned out that my medical history, though not serious, was enough to cause her to reconsider her recommendation and approve Taxotere & Cytoxan for me. She noted that there was some evidence it might actually work better than AC.
It sucks to be looking at this situation all over again, doesn't it--especially when you thought you had moved aggressively the first time. I hope your Oncotype score is low low low. Otherwise, be assured that TC is do-able.
otter
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Drea,
My impression is that they push the Adriamycin more with younger patients. My Onco said he would insist upon it if it were his wife--for maximum protection. But I think there's less evidence that it adds anything to the mix with older women, and also more older women have these heart issues.
Did you not do chemo before at the time of your bi lateral mastectomy?
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I saw an interesting debate (online) between breast CA docs on taxotere vs adriamycin, and more docs preferred TC due to less severe possible complications. It was a small sample of docs, but since I have a family history of heart arrythmia I didn't want to take chances.
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I am 38 - and my Onco score was 53. They chose the TC route from the start, I had never even heard of adriamycin. I am thankful they chose what they did, because my heart has been a little erratic with these 2 drugs. There have been a few days when I exerted myself at all my heart would beat rapidly and I would get short of breath. That has passed thank God, but I imagine TX2 will get it going again : (
Hope you all are having a great weekend!
~Sherry
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Sherry, I've been monitoring my BP several times a day, as I've stopped taking my BP meds for awhile (the chemo seems to be lowering it on its own and if I take the medication it gets too low). So I've noticed my pulse shoots way up too, around days 8 - 10. I don't think this is anything serious (like heart damage). I think it just indicates that your red blood cells are low from the chemo and you're anemic. It usually resolves in a few days.
Lani, do you have the URL for that debate about Adriamycin vs T-C? I'd kind of like to read that and I have a friend who is trying to talk Kaiser into giving her T-C. Maybe this would provide some ammunition for her.
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Hi Drea,
I understand the dilemma you are going through. I thought after my biopsy 4/08 that I had a small grade 1 IDC with a low Ki-67 and that there would be no nodes involved. I decided on a BM so I would not have to go through radiation. It turned out I had 1 positive node out of 22 which changed the picture completely. My margins were all good. My surgeon said I needed to go to a onco and the one I saw recommended AC+T and also wanted me in a clinical trial with Avastin. I am healthy so the onco thought the adriamycin would not damage my heart. If I had any heart problems it would come out in 20 years and by them we would not be sure if it was the adriamycin, genetics or lifestyle. I was not comfortable with that and researched on line that TC is just as effective as AC+T. I went for a second opinion and this onco recommended TC right off the bat for 6 cycles. In mid June I found out that Oncotype Dx is now being offered to women who are node positive. I had my surgeon order the test which came back 11, low risk for recurrence My second onco heard the results and said this is new frontier for chemotherapy and oncologists. He discussed my case with his colleages and he felt I still should do chemo but only 4 cycles of TC. I wanted the extra insurance in order to rid my body of any pirate cancer cells. I had my first treatment 7/10. I felt very tired, foggy in the brain, dizzy at times, no appetite and terrible constipation. One week after the cycle my blood work showed I was neutropenic and had 3 daily shots of neupogen. By day 13 my hair started falling out but I started feeling like myself, just tired. I work and try to live my life like before. My second treatment is this Thursday. The doctors are not sure what to do with the oncotype dx for node postive women. You need to arm yourself with as much info as you can find about your particular cancer. Soon chemo will be tailored to each individual's specific type of cancer. This will decrease the side effects and mortality from the treatments. I did research through google and found many studies to confirm my decision making. Good luck.
Charlotte
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Thank you all so much for the great input!
Otter, yes it definitely sucks to be dealing with this when I was so aggressive in treating my little bitty spot of DCIS in one breast! I not only had a bilat mastectomy, but bilat sentinel node bx, which is thought by many to be overkill for DCIS or prophylactic mastectomy. It turned out I had two more little bitty spots of DCIS in my left breast -- one suspected (due to faint calcifications on mammo), one unsuspected, which was actually in my nipple (which is rare) -- and ADH in my right breast. So I knew I did the right thing. My nodes were negative, and I had the NCI read my slides for a second path report to confirm that there was no microinvasion, wide margins, etc. And they did. I felt very strongly that I was ALL DONE with bc! Of course, bad things happen, no matter what you do, so it is what it is, and I'm doing pretty well now just coping with the realities and making decisions, etc. But it's safe to say that I am thoroughly irked.
Sandra, no I didn't do chemo before -- nobody (I don't think) recommends chemo or hormonal therapy or radition for isolated "pure" (ie no invasive disease) DCIS that has been removed by mastectomy with wide margins. Sort of by definition, DCIS shouldn't be able to go anywhere. Since mastectomy is no longer an option, this time I get to do all three! That is very interesting about Adriamycin for younger women... My onc seemed to be suggesting Taxotere in part because she didn't want to give me heart problems at 37 that I would have to deal with the rest of my life. I'll have to look into that -- thanks!
Lani, I would also love to see the online debate about AC vs TC, if you can find it (I know it's hard to keep track of all the stuff you find online, though!).
Sherry, I agree with Sandra -- increased pulse and shortness of breath probably does not suggest heart damage, just your cardiovascular & respiratory system trying to deal with (temporary) chemo-related changes. I'm sure it's scary though.
Charlotte, wow, sounds like quite a rollercoaster for you! I had heard that Oncotype is being offered to women with just a couple of positive nodes now -- amazing. Although I would never dream of complaining that I have early stage ER+ PR+ cancer, it does make these decisions complicated -- you don't want to overtreat and make yourself sick for no reason, but of course you want to know you've done everything you can to keep from having a recurrence!
Best,
Drea
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Here's one of several I've seen...be reassured!
http://professional.cancerconsultants.com/oncology_main_news.aspx?id=35701
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Kim1965- I am day 20 from tx-1 and like you have really had no side effects other than a little achy the day after neulasta (day 3), and hair loss of course. That started about two days ago with a few strands each time i ran my fingers through it. now it's lots of strands, but I have very thick hair. I figure in a day or two I'll buzz it. It's kinda weird but the hair thing was a little reassurring that the chemo was actually doing its thing. The complete absence of other s/e's was beginning to make me wonder.
I have treatment #2 tomorrow.
By the way 1965 was a great year. 8/11/1965
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I have really low blood pressure to begin with, so that may be part of my problem. I think the last time I checked it was 98/58. The nurse asked if I was ok - but I told her that's just me.
Someone mentioned the Oncotype Test, I just wanted to tell you that they recently started testing more people with that. They tested me and I am triple negative. I think it still says that it is only for ER+ people on their website, but I haven't checked it since I was looking for info.
They gave me a 53, but I wonder what exactly they compared it to - since they hadn't been checking tri negs before.
I hope you all have a good week - good luck on #2 irishbrae- I'm right behind you - #2 on Tuesday!
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Hi Irish -
I'm on day 13 and just this morning I noticed the stands that you were referring to coming out when I run my fingers through my hair. Pretty freaky. I figure that I'll be getting my head shaved in a few days. Right now I have long straight blonde hair. I spent a fortune on a human hair wig with a lace front and I have to tell you....it looks EXACTLY like my natural hair. For those of you who haven't heard of lace front....the hair on the wig is hand tied allover, but in the front of the wig that frames the face, the hair is tied to a frame of lace (looks like mesh). It makes the hair appear to be growing right out of your head (as opposed to non-lace front wigs where, if you pull the hair back, you see a "band-like" appearance). I've also learned that you can get these types of wigs bonded to your head with some type of adhesive that keeps in in-tact for a few weeks. You can get in the shower and wash and blow dry your hair like normal. I'm not sure that I'll go that route, but I thought I would put it out there for others to learn of this option.
My next treatment is Aug 5th. I hoping that my side effects are minimal. With treatment number one...if I didn't know better, I would have thought that they put water in those chemo bags...not a single side effect. I feel completely normal.
Regarding oncotypes..I was a record breaker at a whopping score of 65. For those that are curious, go to the HER2+ thread and read the High Oncotype Horror thread.
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Regarding Kaiser and TC -- I was treated with TC at Kaiser (finished 7 wks ago). We discussed AC-T but when I asked what they thought about the research at UCLA regarding A not being that effective for Her2- patients I was immediately offered TC as an option.
Taxotere also lowered my blood pressure significantly. Pre-surgery I was running about 135/85 (I was a little anxious), after the first chemo it was more like 105/70. In fact, when I went to the ER with a fever they wouldn't let me out until I proved I could walk around without falling over since my pressure was so low!
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catlover- I've done my best to find reasons to laugh during all of this. I loved your "foobs" comment. I think when people hug me they are surprised at how hard the foobs are.
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I buzzed my hair tonight and it feels GREAT! I go for tx 2 tomorrow.
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Otter, thanks again for the information about Neulasta. As usual, very helpful. Guess I better keep watch over my temp carefully with the next treatment. This time there were no problems. I'm also going to check out the local ACS office and see what freebies I can scrounge!
Charlotte, It sounds like you are extremely calm and methodical in sorting through all this data and using what you know to make good decisions. Having a positive node must have been a real bolt out of the blue when everything else looked so favorable. Darn!. With 22 nodes taken, are you having any problems with lymphedema? Good luck through your T-C regimen. Sounds like you have what it takes to deal with anything that comes along though.
Drea, Thanks for clarifying your original diagnosis. And after all that good sense and doing the right thing, it still comes back? Ain't no justice in this world, that's for sure.
Revcat, I am SO interested to hear you were able to talk Kaiser into T-C. I passed this info on to my friend, who is not having much success talking them into T-C at this point. I don't know what her HER-2 status is or how relevant your case is to hers, but it should at least give her some hope that they can be reasoned with. Also very interesting to hear that I am not the only person that has experienced a lowering of BP on Taxotere. In my case it has been kind of a good thing (except for the first few days when I was still taking Lisinopril and almost fainted a few times). I could find no mention of this possibility in the literature I was provided and my Onco PA was no help.
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Hi Sandra,
It was a shock to wake up after surgery and hear from my family that 22 nodes were removed and 1 was positive for cancer. I think I started cursing real loud and then decided I will deal with this too. No signs of lymphadema. I went for physical therapy and saw a lymphadema specialist who taught me exercises to do for the rest of my life. I also ordered a arm sleeve to wear whenever I need to especially when flying. I plan to fly 8/9, 10 days after my second chemo tx. I hope I will not become neutropenic again. I will be getting neulasta this time the day after chemo. My blood pressures have been running lower than usual which I attribute to the taxotere. My hemoglobin, hematocrit, platelets, red blood cells were lowered after the chemo which will cause lower blood pressure and increase your heart rate. It is the body's way of compensating when the blood chemistry is changed.
Charlotte
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Sarah, I will try to look for the link. I got sidelined with weakness, dizziness, nausea, and finally a trip to the ER yesterday for fever and neutropenia despite a Neulasta shot. Sicker than I can ever recall being. Better today, though, so I guess I'm not going to die after all.
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Irish -
Did you hair hang on for 20 days? I'm thinking of buzzing mine tomorrow (day 14). I could probably hang on to it for a few more days, but I just want to get it overwith.
Kim
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Lani, So sorry to hear about the rough weekend you had, especially the nausea, which should be avoidable. And here you started out so optimistic. Did you receive adequate medication for nausea during your treatment and afterwards?
It seems like a lot of us get the perilous dip in WBC with the first treatment, but this seems to improve with the subsequent treatments, so let's hope that will prove true for you next time around, but I am so sorry to hear you have been so ill. Let's hope you recover quickly.
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kim1965- I wouldn't say it really hung on for a full 20, I just had really thick hair, so I had a lot to lose. On day 16 if I ran my hands through it to put it in a pony tail I got 8 or 10 strands. By day 17 it was twice as much and by 18 alot. I treated very carefully on day 19 and just kept it back because my daughter was having a sleepover and I figured it would be easier for her not to have to explain.
When I buzzed it on day 20 I felt so good to take control of the situation and It's actually kinda cute. I leftt about 1/4" and its still thick enough that I don't have bald patches. when they show up i guess i'll buzz it completely. I had my #2 treatment this morning and saw several young women who were completely bald and It made me feel better. I think maybe bald can be beautiful! But thank goodness it is temporary!
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I'm visiting my parents and once again I forgot to post this week's TC schedule. Here it is, based on my notes. Let me know if there are changes or mistakes:
Mon. July 28: Irishbrae (#2), AMANN (#2)
Tues. July 29: karebear43 (#4-done!), danismom (#4-done!), JulieC (#4-done!), deecsw (#4 ACdd-done!), Gina_M (#2), SDM (#2), sherri38 (#2 dd)
Wed. July 30: Lenny (#6-done!), MsKarin (#4-done!), tkone (#2), IndyHusband (his wife) (#1)
Thurs. July 31: MoinTexas (#3), Bonnie02 (#3), Charlotte27 (#2), SherriM (#2), kbuskirk (#2), MoonChild (#2)
Fri. Aug. 1: lalani (#2), mbutterfly (#2)
++++++++++
otter
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I'm on for tomorrow too
Hope it goes well for all : )
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I'm posting this link again for those who are still looking--it has a clear article about TC vs TAC or AC:
http://professional.cancerconsultants.com/oncology_main_news.aspx?id=35701
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Sherry, I missed the fact that your TC regimen is dose-dense (every 2 wks instead of every 3 wks). I corrected the schedule for this week. Are you getting 4 treatments, or will it be 6?
catlover, the results in the 2005 abstract you cited have since been published in the Journal of Clinical Oncology. The abstract of that JCO paper is accessible, but the entire article probably requires a subscription or library access: http://jco.ascopubs.org/cgi/content/abstract/24/34/5381
And, here's a press release containing updated (2007) results from that same study on Taxotere vs. Adriamycin: http://www.medpagetoday.com/MeetingCoverage/SABCSMeeting/tb/7689
The Taxotere story is continuing to look good, except for the immediate (short-term) SE's, of course!
otter
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Drea, I'm sorry you have to deal with this again and although rather late with this but if you need more input, I had Taxotere and Cytoxan at the recommendation of my breast (only) onco. She also sent me for a second opinion with another breast (only) onco at (well respected) Yale New Haven in CT who said T&C without a doubt. My DX is similar to yours although I was negative for the BRAC gene which surprised both of them. I had bc in 2003 and once again this year - other side - and choose to have a bilat mast.in March.
I found the TC tolerable. I had the usual oral and lower GI se's. Never any nausea. A flare up of an old nemesis eye inflammation was my worst problem and I haven't heard from anyone else on this board who experienced the same.
Right now, I have to admit, I'm exhausted - the most exhaustion I've experienced. And weak. Had blood work yesterday and I'm still slightly anemic. The onco doesn't want to see me for another month and it seems taking extra iron probably wouldn't remedy the situation. I also understand that anemia can cause the shortness of breath I'm experiencing with fewer red blood cells to carry the oxygen. I didn't discuss this with the onco but did a little reading. Has anyone out there had their anemia treated? I didn't get my numbers but last labs 5 weeks ago before the last infusion, hemoglobin was 10.5 and RBC was 3.43.
otter, thanks once again for the class update and cheers for all those finishing this week.
Sandy
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Hi Everyone,
I'm on day #12 of my 2nd Tx. I've had pretty much the same symptoms as the first. No acne-like breakouts, so that was good. The nausea/heartburn seems to be the worst of it for me. It's tolerable, but lasts like 10 days. Argh! I'm so glad I kept a daily diary of my symptoms. I'm pretty much mirroring the last cycle. Last cycle around day 11/12, I got this weird eye thing. It felt like conjunctivits. My eye was sticky-like, then it resolved and was more like a dry eye spot in the center of my eye. It's doing that again. Weird.
Has anyone gotten a rash at the infusion site of the Taxotere? Sunday afternoon I noticed I had a 4-inch line of rash at the infusion site. It didn't hurt at all, but looked pretty inflamed. It didn't go away, so I called the doc and went in to show them. She said it was from the Taxotere. She wasn't alarmed and just told me to take Motrin for a couple of days.
(I should add that there was a little 'incident' at my last tx. The 'cap' wasn't on the IV properly and the Taxotere was dripping extremely slow. A different nurse checked on it and said, "Oh no, it looks like the cap isn't on properly and I just have to flush it with saline." I do think some of the Taxotere extravasated outside of the vein because I was bruised at the stick site, but there was a 'line' that extended for about an inch from each side of the stick site. Ironically, the rash looks similar, but it's longer and wider.)
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Regarding my previous post - make that the BRCA gene
Sandy
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chloekat, I had an area the size of a quarter around the infusion site which looked like a burn after only one of my tx's . My onco asked if the taxotere had spilled but I didn't think so. It didn't hurt but it did peel.
Sandy
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Sandy, lol, I just finished editing my post and see that you have a similar eye issue. Sounds like we're having similar happenings. If your Onc asked if there was a spill, I'll bet there was since the incident I had makes me wonder. I get a little anxious because I just want to do this thing right and don't want anything to interfere with the schedule or dosage. Sometimes, I feel like I'm going crazy trying to be so 'on top of things'.
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chloekat, what a coincidence about your eye as well as the "spill". It isn't funny but it sure is strange. I've had a long history of scleritis but after tx #2, it swelled shut, was extremely painful and after ct scans of my orbits, I was on oral steroids for 17 days. I saw an ophthalmic surgeon and an iritis specialist. Neither of them nor my onco would conclude it was the taxotere but we discussed stopping tx after 2 infusions. I did finish the 4 tx's but it flared up again after #4. I finished another course of pred. Hoping and praying for the best now that chemo if finished. The interesting part is that my inflammation is often treated with cytoxan but in greater doses.
Praying for the best for you also.
Sandy
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