Anyone on just Taxotere and Cytoxan?
Comments
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Thanks, Lani. Short of a transfusion, is there anything (meds) they can do to boost your RBC's? I hope you do bounce back as each day goes by. Do they have to wait for RBC's to come up to a certain level before they will start rads? I am thinking ahead for myself, and also wondering if that is in the cards for you, too?
Meg
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No, Meg, they can't. The onc said one indicator in the CBC showed I had enough iron in my system. But I have considerably more energy now at 4 1/2 weeks than I did at 3 or 3 1/2, so it comes back pretty fast. I don't know about the rads. It would only be necessary to wait if the rads affected your bone marrow, which I doubt. I don't have rads as I elected for a mastectomy and will do a prophylactic one on the other side next year. I'm starting aromasin. The scary thing about it is that patients reported 14% alopecia with it. I'm so over the alopecia!
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Hi, TC warriors!
I saw a couple of posts I thought I'd answer.
Lani, I know what you mean about the progressive weakness/tiredness. I thought I was doing great until after tx #3, when the great tired hit and hung on until well into my "good" week. Then along came tx #4, and I was dog-tired for the whole 3 wks. My hemoglobin started out around 13 pre-chemo, and by the time I had bloodwork done right before my 4th tx it was down around 10. I'm sure it went lower than that after tx #4.
My onco had threatened me with an Aranesp shot (similar to Procrit), but I declined and she agreed I could probably handle the anemia. I do think it took an extra 3 or 4 wks (in addition to the usual 3) after tx #4 for me to feel halfway normal; and I was out of breath a lot longer than that.
jdfromwv, for me the severe indigestion/gastric reflux was probably the worst SE of my 1st tx. It started the day after my infusion and lasted 10 days. I was really, really miserable--I was chewing Tums and taking OTC Pepcid AC and they didn't seem to help at all. My stomach hurt so much it almost made me nauseous.
When I told my onco about it (after it was already getting better), she said she could call in a script for Protonix or something similar. Protonix, Prilosec, and Nexium are all proton pump inhibitors. For most people, they work a lot better than Pepcid and Zantac etc.
For tx #2, I started taking Prilosec OTC (the generic version = omeprazole) every morning beginning the day of my infusion. My onco said to take it at twice the OTC label dose (take 2 x 20 mg/day), and to take it as long as needed. Voila! No more heartburn/indigestion. Oh, okay--one time I ate a really greasy meal, and I had a touch of heartburn that was fixed with Tums.
So, be sure to ask for something stronger than Pepcid. There are lots better drugs.
I am now 19-1/2 weeks post-chemo, and I feel great! My hair is even growing back.
otter
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Hi everyone,
I have seen otter's hair on another board and it looks great! I can't wait until I have that much hair. My last cycle ended two weeks ago and the hair is definitely growing though - it started coming back in the last week of TC#4 for some reason (my oncologist assures me the reason isn't "chemo not working"!).
I had my exchange surgery on Monday - it was all a lot less fraught than the bilat mastectomy 6 months ago - and nice to have one more part of "the process" over with.
ilovemykids - it seems everyone's nadir (bottoming out of blood counts) is a bit different but I think days 5-7 is probably earlier than most of us. Mine bottomed out somewhere between days 10 and 14 but I may have been later than most. My counts (without neulasta/neupogen) were their worst from around days 9-17. I think the number they most(?) care about is the absolute neutrophil count (ANC) - under 1.5 is considered neutropenic (mild), .5 to 1 is moderate neutropenia, and under .5 is severe. I think the norm is not to give chemo again until you're over 1.5. My understanding is that the neulasta/neupogen doesn't keep your counts from dropping, but it shortens the period of the nadir.
Meg, I'm having the night sweats too (and sometimes day ones) - my nurse recommended something homeopathic but I haven't looked into it yet. I can look up the name though if you're interested. My oncologist said there's various things they can prescribe but there seemed to be potential negatives to each thing (e.g. one was prozac) so I'm waiting to see if it gets less bearable - I've gotten more used to it at night so it's disrupting my sleep less than at first. I started Tamoxifen two weeks ago and that can apparently make them much more intense - by and large they've stayed the same for me though.
A question - has anyone's doctor suggested/talked with you about Zometa? Is anyone taking it/planning to? It's a bisphosphonate (whatever that means) that they started giving metastatic patients with bone mets but they've now discovered that if they give it to at least some cohort of earlier stage women, there ends up being a lower incidence of both bone and other kinds of mets. My oncologist is sending me some info about it, but I was curious if anyone else had looked into it?
Hang in there all, the chemo will be over before you know it.
Hugs,
dcgirl
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HI Everyone:
I'm glad to hear that everyone is doing basically well. I felt icky from about day 3 up until day 10 with treatment #2. I continue to feel my heart through my chest when I'm laying in bed. It's not irregular but it just doesn't feel the same. I had an EKG done which showed some Axis change but said it was "probably normal for her age". With each treatment I feel like I don't want to take the next one and wonder if 2 would be as good as 4 if I decide to quit. Anyone else feel like that too?
Has anyone seen the article on NSAIDS helping to avoid recurrence of breast cancer. NSAIDS (Aspirin and Motrin) reduce inflammation and are Cox 1 & 2 inhibitors. Celebrex is a Cox 2 inhibitor and is being used in trials along with Tamoxifen or Arimidex and is showing promise. Taking Motrin every day can cause gastric or bleeding problems however the anti-cancer effect seems to be real. I was reading that there was a study done of women who had arthritis and had taken Motrin for a long period of time. It was found that these women had very little if any cases of breast cancer. You may be able to google some information about this. I'm not sure which site I found it on.
One last question..... how many of you are taking antioxidants while doing chemo? I've been hearing conflicting information on this. Thanks!
Katie xxoo
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Thanks Annie,My hair started dropping out yesterday and today it got so bad that I went to my hair dresser and had it shaved off. My daughter was told that she could go into labor any minute. I didn't want to be in the labor room with her and be shedding like a dog so I got it shaved off. I'm much more relaxed this evening than I was prior to having it shaved. Even though I was prepared mentally for being bald the hair coming out in chunks really bothered me. I got it shaved off but not before having a little fun with it first." Cancer can take my boobs and now my hair but it will not take my spirit!!!
Dx 6/25/2008, IDC, 3cm, Grade 2, 1/10 nodes, mets0 -
Otto, Wink and Unique- thanks for the advice. I will ask the onc to prescribe something stronger. I seem to be in the minority on the acidity problem. Yes Wink I am from WV. It is beautiful this time of the year. I am so glad I found this board!
Just a few thoughts I have from some of the posts. FYIs
My onc didn't prescribe the shot with my first treatment and I had a real hard time. My WBC went down to .8 and I felt lousy. The neuprogen shot was prescribed the 7th day through the 12 days finally and only then did I feel better. I had my second treatment 10/10 and the shot was started on the second day after treatment for five days. Night and day difference. I still felt lousy for five days but nothing like before. So, to make a long story short...I would ask the onc about the shot before tx 1.
I think I had caffeine withdrawal after the first treatment also. I am a coffee drinker but treatment has ended that. I am having severe reflux. So with my second treament I started drinking a litle hot tea in the morning and I haven't had any headaches this time.
I bought a real hair wig today and had it styled similar to my normal hair. I have synthetic hair also and it looks fine but for me the real stuff feels better on my head. The cap doesn't feel as baulky. Does anyone else have the same experience?
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Oregon -What a great px! My kids would have loved if I would have done that!
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Hi everyone,
Just finished reading the posts and catching up. Elizabeth, hope you're feeling better. Penny, love the hair! It's day 18 following tx#1 - next one coming up on Thursday - and although more hair than usual is in the brush each day, it's not really falling out in large quantities. I still have plenty of it. In case it does go, I have a couple of scarves and I'll stop by the local American Cancer Society office to get a free wig and more stuff if needed.
After my first tx, I had TERRIBLE heartburn/stomach pain and I also love coffee and haven't given it up. I wonder if that aggravated the problem? All of you sharing your experiences is so helpful and is really so much more valuable than the advice I get from my onc or her staff. All they can do is read from a sheet of side effects. So, thank you for the important information. I also have a tendency to be anemic and I've been wondering if chemo was going to have an effect on that.
The Lifetime show tonight on Dr. Slamon was great, and the show before it, "Why I Wore Lipstick to my Mastectomy" was wonderful, too. Has anyone read that book? I did read the HER2 book so was familiar with that story.
Take care everyone.
Teena
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Katie - I am drinking a powerful antioxidant juice called MonaVie. It is the best antioxidant juice out there right now. It's #1 ingredient is the Brazilian acai berry, and it has 18 other "super fruits" in it. Have you heard of it? You can find it at www.monavie.com. I have read that you should definitely not take antioxidants with rads, but have heard that it is beneficial with chemo. I told my onc I was drinking this juice, and she was fine with it. My plastics doc has been really impressed at the quality of my skin and the healing of my incisions following my bi-lat mast, and I attribute it to this juice. Good stuff! Have you heard otherwise?
dcgirl - Last night was the worst sleep ever! Even after a long walk and tons of yardwork yesterday! I swear I wake up every hour at least... I couldn't wait for it to get light out this morning so I could get up! I will talk to my onc about options. I don't think I can go on like this through two more treatments. I will have to take tamoxifen, too, so who knows if I will ever get a good night's sleep again! Yeikes!
Meg
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dcgirl - my onc has recommended the bisphosphonates trial for me. The coordinator of the program called me and we are to set up an appointment when I finish my chemo. It is the only thing that I can do that is proactive to reduce mets as I am a triple neg.
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This is the link for information regarding the bisphosphonate clinical trial.
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Well, I go for my last treatment tomorrow. I have not contributed much to this forum but I read it and get caught up on everyone about once a week. It seems like just yesterday that I found ya'll the night before my first go round 3 months ago. As many before and after me, I was terrified and grateful to have a forum to express it and from which to find encouragement and strength. I have had a comparably easy time of it -- but am so grateful to have recognized myself, SE's and feelings from the writings of all you brave women. I have taken away much knowledge and compassion from this group. I probably won't be checking in as frequently as I am anxious to move on, but I will never forget you all. All of my best to everyone. Fight hard -- Kick arse-- and Thank you -- signing out for awhile to move on to radiation RX and the rest of life. bonnie
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Elizabeth, it's so great to see a picture of you. You are such a pretty girl! I do hope you are feeling better than you were!
Wow, guys, am I feeling flattened by a steam roller on this second round. I'm not having the other flu like effects, just the most incredible exhaustion ever. Well, the metallic tongue taste and the constipation (took my Miralax).
Katie, I know how you are feeling about each new round, but I think all the studies are with at least four, so you can't know whether two would do you any good. You know four will - some oncs do six rounds of TC, but evidently (guess we could look it up) six doesn't show better results than four. Look into it, let us know what you find out.
Penny, LOVE THAT MOHAWK! IT ROCKS!
I still have a little hair but I think this round is going to knock the rest of it out. It's not shedding at the moment, so at least there isn't hair hair everywhere.
I think there is a controversy about antioxidants that they not only make your cells stronger, they make the cancer cells stronger, too. I don't know if I buy this but I did go down from my normal 1500mg of Vitamin C to more like 400mg.
Bonnie Lee ~ CONGRATULATIONS GETTING THRU IT! YOU GO GIRL!
Wink, that trial is randomized to three arms. Are all three biphosphanates? The drugs listed were Zoledronate, Clodronate, or Ibandronate.0 -
Hello,
Unique - Thank you so much for the compliment. It really lifted my spirits.
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I asked my onc about bisphosphonates on Friday. She seemed to think the trial was closed now, and if she prescribes off-label (before the FDA approves it) it will cost $2000 per infusion. She thinks it will be approved for treatment of early BC within 9 months or so, based on some favorable reports at the BC conference in San Antonio this June. It will involve an infusion once every 3 months.
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Margaret --
Has your onc. prescribed decadron?
Mine did, 2 the day before, 2 the day of, and 2 the day after chemo. I could never sleep while taking that. They said it would speed up absorption of the chemo, but I didn't realize it's a cortizone drug, and it's Speed to the endth degree. Talking to myself all day and night, making hundreds of lists, couldn't stop talking. I finally realized it, and then my doc said I could to down to 1 each of those days. It helped a lot. I couldn't tell where you are in your chemo cycle.
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Hi Bee- I am taking decamethasone (same as decadron right?) for 4 days beginning the day prior to infusion. I have an infusion tomorrow, so I started the decadron today. Ativan tonight, for sure. What I think is contributing the most to my sleep issues is that the chemo has put me into menopause and the night sweats are waking me up every 45 minutes or so. I am 49 (very soon to be 50..Yeikes!) and I haven't gotten a period since starting my first Tx on Sept. 8. Tomorrow is my third Tx and I am wondering if the menopausal side effects will continue to get worse. I am taking Celexa, which is an anti-anxiety drug that is also supposed to help with meno symptoms. I was taking it in the morning, but someone suggested I take it in the evening to see if it helps with the night sweats. We'll see.
I know what you mean about the steroid, but I think I am okay with the dosage... My onc told me the steroid was for nausea, but your comment about the absorption has me curious. Maybe it's use is two-fold. Anyone else have info on that?
Wishing the best for everyone having a Tx this week...
Meg
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Katie2u,
I took NSAIDS for 10 years or more,finally had to go off of them because they did cause bleeding.I was throwing up blood,so they made me get off of them.I had been off of them over 10 years and was diagnosed this year with BC,so they sure didn't stop me from getting it.I now have it in all my medical records that i'm allergic to them.I'm also allergic to statin drugs and quinine.
Kathi
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Annie & Lani - I just talked to the coordinator early in September. She told me that we would start several weeks after my last treatment (she was thinking that I had six and it would be in January). I will try to get in touch with her tomorrow. Annie, all three are biphosphonates, they are bone-strengthening drugs like Boniva (sp?).
Meg - I hope that all goes well for you tomorrow; I'll be thinking about you. My 3rd tx in on Thursday. I turned 50 in May and was pre-menopausal (had hyst @ 40, left ovaries, FSH was still low prior to surg). I've not had any night sweats, but have practically swooned from hot flash at work.
Penny- loved the mohawk! Wish I would have thought of doing that - I wonder if I would have been sent home from work? LOL
Teena - when is your next tx? My hair has stopped falling out (shaved it because it was so patchy) and is actually starting to grow again. My eyebrows & eyelashes have stopped shedding (and yes, there are some left). Didn't lose all of my hair "south of the border" and it looks like I'm going to have to shave my legs soon. What's up with that? I even rolled my head with one of the sticky lint rollers and nothing came out.
Bonnie - congratulations!
Meg - I often wonder if I'll ever sleep like a baby too. My husbands right next to me, slap asleep with all of the lights on and me clicking away on the computer - I'm soooo envious!
JD - I have both a human hair wig & a synthetic one; I much prefer the human hair one because I can style it just like my own, old hair
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Kathi: Wow, thanks for your story on the NSAIDS. I'm allergic to Statins too and came off after 3 days.
Annie: I'm sure I'll go in for round 3 but it seems like I'm looking for an excuse not to. I'm actually meeting with a Chinese doctor in NY on Tuesday who has a Phd from Harvard and practiced at Sloan Kettering.... I"m flying up from Florida. His specialty is Chinese Herbs and a woman in South Florida swears he cured her chest wall mets twice. I'm going for input on preventative when chemotherapy is finished.
Meg: Funny you mentioned MonaVie. When I got diagnosed I was working in California as a travel nurse and as I was ready to leave back to the East Coast, when a co-worker of mine gave me a full bottle. After taking the first dose I felt a little funny... almost like I was allergic to something in it and I was afraid to take it again. I've heard many good things about it though.
Meg and DCGirl: I am having the night sweats too. I'm almost glad that I am getting them because I want those ovaries to shut down once and for all!! I do not need any extra Estrogen. I'm also avoiding milk since even the organic kind contains lots of Estrogen as cows are milked when they are pregnant and there's no getting around it. I am drinking Rice Milk now and getting used to it. My dietician told me to take Psyssilium Husk Powder twice daily because as you eat and the bile kicks in, the husk powder pulls the estrogen out of your body. I haven't been taking twice daily but usually once a day.
Hope everyone has a good week!
xxoo Katie
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Katie, glad to hear that you're hanging in there. I felt the same after my 2nd treatment. I wondered if I could really put myself through it two more times. I remember when he was talking me into doing chemo, my onc told me since it was a preventive measure to try it and if it was too bad I could always stop. Guess that was in the back of my mind. But, I am going to try my best to finish what I have started.
Bonnie, congratulations and I wish you the very very best with the rest of your life!
Chris
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Katie: I know what you mean - I'm trying to view the hot flashes as a good sign the estrogen is getting shut down. I'm only 40 so it may not last but I'm hoping I only have to do the menopause thing once!
Meg: I've had a couple of really bad nights but not every night - it has gotten better. See what your doctor says though - if they can help you, go for it. I've heard for some people they last around 6 weeks - or peak then - but for others it can be a lot longer (yikes). I was just finishing my period when I started TC in mid-July; haven't gotten it since. I didn't get the flashes until the second cycle and they got a bit worse with #3 and #4. Now they seem to be less at night (though I still have them...) but I'm getting them from time to time during the day now. Fun, fun, fun...
Lani/Wink/Annie: there was a report at ESCO (Euro version of ASCO) in mid-Sept re bisphosphonates that my oncologist told me about. I think he said it would involve Zometa every six months and would be NZ $600 (about US $400 these days) a shot. I'll report in when I get more info from him.
Take care all!
Meredith (aka dcgirl)
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Hi Everyone!
Deanna--sorry if you've been worried about me. I've been reading the posts but just kind of too distracted to respond. For some reason (chemo brain?) I forgot all about posting the schedule for last week. I didn't have a computer in Sedona, and didn't really plan ahead for the fact that I would not be returning home until very late Monday night. My apologies to those of you who had treatments last week. That included (I think): Sherrie1964 (#3), Rickster (#3), samiam (#3), iowagirl (#3), ilovemykids (#1), unique(#2), and rseaw22 (#2). If I missed someone, please let me know. Hope you are recovering. I know some of you had a hard time.
I'm now 7 1/2 weeks past my last chemo infusion and doing really great. Feel my normal energetic self, no strange tastes, and started at the gym right before I left on my trip. I'm enjoying it and am trying to either do the gym or walk at least 4 times a week. This is a major, major life change for this couch potato, but have to get ready for the slopes.
With regard to low WBCs and anemia: these were major problems for me during chemo and with them, fever and debilitating fatigue. Otherwise my SEs were fairly minor--mostly sore mouth and teeth, earache, some minor acid reflux, and insomnia) and I tolerated chemo fairly well. I forget how low the hematocrit fell, but, as in Lani's case, the docs were threatening possible transfusion. Fortunately, the bloodwork done at 4 1/2 wks post-chemo was most encouraging and almost normal. I have to get it checked one more time before my (hopefully) last Onco f/u appt on Nov 14th, but I can't imagine anything abnormal, since I am so ridiculously peppy now. My energy level may have something to do with the fact that I am sleeping so much better now that all the stress is over.
I've also started Femara, and so far can't say I'm noticing any SEs from it, but I understand these may take awhile to express themselves (oh, joy). Anyway, for now, life is velly, velly good! So, below is the schedule for the week. Now is as good a time as any to ask if any of you kind souls would consider taking this schedule posting chore over for me--as I did for otter????? My hubby and self are anxious to make up for all the trips and vacations we weren't able to take this year--my first official year of retirement--because of BC taking over our lives. We already have trips planned for November and December, and the intention to spend every possible waking minute of the winter at Mammoth. Please PM me if you have an interest. Thanks!!!
Good Luck and Happy Trails to BonnieLee and donotcallmesue, both of whom ladies are finishing up this week! You are awesome! And now for this week's Happy Campers . . . . . .
Schedule for Week of October 20th:
Monday, 10/20-BonnieLee (#4 of 4), Lili46 (#3 of 4), ladyleen4 (#2 of 4)
Tuesday, 10/21-robichson (# 3 of 4)
Wednesday, 10/22-birdsong ( #5 of 6)
Thursday, 10/23-nurseKim (# 5 of 6), oldlady (#3 of 4), tattered_tata (#3 of 4), pageroo (#2 of 4),
Wink (#3 of 4), TNT (#2 of 4), OregonPenny (#2 of 4)
Friday, 10/24-donotcallmesue (#4 of 4)
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Hi ladies,
re the sugar discussion - does anyone know if honey would be a good alternative to processed sugar or sugar substitutes?
thanks, Susan
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Lou - I just had my second round of taxotere and Cytoxan. I was fortunate as I didn't have any debilitating side effects from the first round so I'm sorry I can't totally relate to your case. Are you taking Emend prior to treatment? You take it day 1, 2 & 3. It's expensive ($400 for three pills) but really does the job-check with your insurance company to see if it's covered. I have found that eating smaller meals rather than large ones (especially at night) seems to help with the nausea and discomfort. My second chemo treatment knocked me for a bit of a loop as I found myself very fatigued. The nurse said it is cumulative so it will has a different effect every time. I also receive the Neulasta shot on Monday (chemo on Friday) which I get an adverse reaction to on day 4. First time I ended up with such terrible bone pain I was hospitalized, this time I was proactive and took pain meds as soon as I started feeling the painful symptoms. Are you receiving the Neulasta?
The way I look at it is that this is an investment of my time and life in order to prolong my life. I am trying very hard to be optimistic but still have my down days. We need to be grateful for modern medicine - the toxotere and cytoxan cocktail has only been around for 2 years and does not cause heart or lung problems, as its predecessors did. For that I am thankful. As hard as it seems, treatment is much better than it was years ago. Perhaps we should look at our going through it as a way to better the treatment for those in the future. Hang in there - only 3 more to go-- thank God for small favors as I have friends that need 8-12 chemo treatments.
I spoke to my onc about the nail thing - he said unless you're receiving the taxotere weekly it should not pose a problem. Your hair will fall out - but be proactive and have your head shaved once it does - make it fun - do a Mohawk and take pictures, after all when will you see yourself bald again? (hopefully never.) Your scalp will still have some hair (crewcut style) and be tender but as we've all heard - It will grow back. It's much easier to manage too - less time to spend on your hair means more time in bed.
Maybe some day NO ONE will have to go through this. It is only in living with cancer that we truly appreciate the simple things in life. The upside of all of this is that you will never feel more loved - people really reach out to you. And it is temporary - it's a journey we have to take whether we like it or not.... I hope you join me in trying to enjoy the small things along the way, taking one day at a time until we can celebrate TOGETHER in the spring of a new beginning.
CINDI
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Re:Honey - Make sure it's pasteurized if you are in treatment.0
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would the kind you buy at Walmart be pasteurized? Sorry if that's a dumb question!
s.
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Hi all,
I had Tx#3 today (FYI - I got missed on the list) and they infused the Taxotere faster this time because it went so smoothly the last two times. Well, I had quite a reaction after about 5 minutes that left me breathing hard for air, completely flushed on my face and chest, and I saw stars for quite a while. Needless to say, they reacted quickly to turn the drip off, give me O2, and give me an injection of Benedryl and another steroid. Guess what... I was not even concerned or panicked because I knew what was happening and how they would fix it from reading someone's post about this very thing happening to them! This is a thanks to all of you who have passed on such great, important info and are helping all of us to be smarter and take control of our circumstances all that much better!
Thanks too, to Katie and Wink for your sympathies and support on the menopause thing. Ativan is going to become my friend until I get through all of this.
I love your posts, Wink. Thanks for making me laugh!
Meg
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Meg, I had reactions like that to Taxotere each time (probably less severe than yours though as I never needed O2 or Benadryl, but they had to turn off the drip within about 2 minutes every time) - yucky feeling, isn't it? I'm glad you didn't panic though. I was only worried the first time but the other times we kinda knew it was coming. They were all the same except once I saw pink bubbles (maybe the equivalent of stars?!) - very odd. Anyway, congrats - you are now officially more than halfway through chemo!
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