Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Minus Two, my TC treatments are over so I'll just have to ride it out and hope it goes away. I won't have to worry about next time. I had some tingling last time and it got better.
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akj, there is a store called Life Extension. Maybe there is one by where you live. They sell all kinds of natural products and they have names of naturopaths, do blood work to see what supplements you need, etc. I haven't been to one yet, but I am planning to.
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Thanks Headeast. I got the name of a naturopath from a friend and I think my insurance will cover it. It'll be interesting to see what he says. Keep me posted about your experience if you go.
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will do, akj!
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Hi ladies.
I have my chemo class this week on Friday (I guess to go over side effects, what to expect, etc.) then start TC3 on May15th. I'm just going back to the beginning of the thread to read what I can. I do have a couple of questions:
1) are you feeling well enough the day of your infusion to do your normal activities? I have five kids with Down syndrome and am trying to figure out the best day of the week for me to get my treatments. The kids will soon be out of school for the summer and I'm on my own during the day. Right now I'm thinking Thursdays for chemo days, then my Neulasta on Friday, and I have my husband and adult son home with me all weekend. Monday I'd be back to on my own. However, if I do Thursdays, that afternoon is therapy day for my kids which means getting them all to therapy, 2 hours of hanging around in the waiting room while they do their thing, then just a few minute drive back home. I know everyone's reactions are different, but for now I have to figure out what I need to cancel and what I can realistically manage.
2) How long does the infusion take? (one hour? two hours? Three???)
3) How were you feeling on day 17? Pretty good by then? I have a major event I don't want to miss! (Its one I plan for all year, every year, and I really do NOT want to miss it if I don't have to.)
4) How many of you are doing radiation when you're done with chemo?
5) Neulasta: My nurse said "If you've ever had a bone break, that is where the worst pain will be." Have you found this to be true? I have had *several* breaks in my life, including skull fractures. GAH!
Thanks for answering all my questions. I'm sure much of them will be answered at my class Friday morning, but I'm just not that patient to wait four days! LOL -
Hi, lespring. I'll answer what I can in regards to my own experience and what I've heard from others. I feel about 75% on the day of the infusion and day after, although the first one I felt about 90%. In my case, it first hit me day 4-6 now it's moved up to day 2 or 3. By that I mean I don't generally feel well and want to lay around...it would be hard for me to do more, as I have trouble breathing after chemo and a rapid heartbeat. Some people go to work and have no real bad effects. I also have my chemo on Thursdays. That day I generally feel pretty okay. Friday I feel basically okay (except this third one). Can you drop your kids off and come back in two hours instead of waiting around if you don't feel well? (Just asking). Monday and Tuesday I generally feel like laying around, achy and a malaise feeling like the flu. It will be a big help for your family to be there on the weekend, as you might also feel fatigued, etc. then. You won't be able to tell exactly how you do until you do it--everyone truly is different and, for me, each time was a bit different.
The infusion takes a little over two hours; probably a bit longer the first time, as they'll want to explain things to you and maybe do it a bit slower to see your reaction.
By day 17, you should be feeling pretty good! I was back to work by then. You will, however, begin losing your hair by then or have lost a good part of it.
Feel free to ask any questions you have! It is nice that you have a class; I had none of that!
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lespring - while we're all different, based on my experience I think you'll need to get more help. My infusions took 6-8 hours since I always needed extra fluid. I had to go back the next day (24 hours later) for a Neulasta shot. (BTW - take Claretin for the bone pain starting the day of chemo & for 6-7 days afterwards.) I felt OK the day before, day of & day after because I was taking steroids. After that I pretty much crashed - totally exhausted. I didn't even hear the phone ringing half the time. I had diarrhea for 2 weeks out of every 3 - the kind where you don't want to get more than one room away from the potty. I was lucky and had no nausea - but took lots of meds in advance to keep it that way. Day 16 was when I lost my hair. Other than that I was building up to day 21 and the next session, so I was in better shape on day 17 than before. At least I could heat a can of soup by day 17. You can do it, but I don't see how you can carry a full load w/5 kids.
If you're going to have steroids to help w/the nausea, I'd recommend chemo on Wednesday so you won't crash until Friday afternoon. That way you have the entire weekend as your worst days. But remember, some ladies find day 6 is worst, and some say day 10. Unfortunately there's no firm path. Good luck.
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Lespring-
1) As for selecting what day to have your chemo, this may give you an idea. I had my chemo infusions on Tuesdays. I received my Neulasta shot Wednesday afternoon. I felt fine on Wednesdays and Thursday ( probably because of the steroids that keep me very peppy). Friday, I would start to feel not so great and usually spent the day resting. Saturday and Sunday were also down days where I rested and took care of myself. By Monday, I was feeling okay again. You may want to consider getting some summer help with the kids. Don't hesitate to ask for help. You need to remember that you don't have to be "Super Duper Woman"; Super Woman will do.
2) The first round of chemo will last the longer than the other rounds because you are getting acquainted with the the infusion center procedures and your infusions will be run a little slower so that the infusion nurses can monitor you closely for any reaction to the chemo. At the infusion center I had my chemo, I was weighed first and then had my vitals checked ( heart rate, blood pressure, temperature.) Then I would have a blood draw to check to see if my blood counts were okay for to receive chemo. Then there was a waiting period for those results to come out. Once those did, the chemo pharmacy orders were signed and sent to be filled. That meant there was more waiting time. Once the drugs were received, it was time to have my pre-chemo IV drug cocktail ( benedryl, steroid, Ativan). Once that was completed, then it was time for the chemo. The Cytoxan is usually run over a 30-45 minute time period; the Taxotere is run over 1 hour. The slower the drugs are run may help prevent a headache that can occur. I ate breakfast before I went to my infusions so that the pre-chemo IV drugs could be administered. The infusion nurses don't like to give those drugs on empty stomachs since those drugs can cause nausea on their own.
3) How you feel on Day 17 is really dependent upon you. That is the week before the next round of chemo. I usually felt pretty good that week. If you are going to a major event with many people, I suggest that you may want to avoid a lot of hugging and kissing, hand shaking and do elbow bumps instead. Even though you may be receiving the Neulasta, you still need to be aware of the people around you who are sick. Your white blood cell count may be in a good range but the last thing you want to do is catch a cold or get sick. As for the hair loss, everyone is different. My hair started thinning after Day 14. I didn't buzz/shave my head and just let happen what was to happen.
4) I didn't have rads. I may be one of the few here that didn't have rads.
5) Neulasta shot- I started receiving that shot with Rounds 3-6. I developed a high spiking fever/chills right before Round 2 which was treated with antibotics. After that, my onco ordered the Neulasta shot after the remaining rounds of chemo. She is one of those oncos that orders the Neulasta shot only after the patient demonstrates that the shot is necessary. I used to receive my shot in my tummy since that is where I have some fat and didn't want to have my arm hurting from the shot. I also took regular 24 hour Claritin the morning that I had my afternoon Neulasta shot in hopes that it would help prevent the bone pain related to the Neulasta. There is an ongoing clinical trial investigating the use of Claritin for this purpose. I was fortunate that I did not have any bone pain relating to the Neulasta shot but one needs to remember that muscle aches/joint bone pain are side effects of this chemo regimen.
If you have further questions, ask. We are here to help you.
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Thanks ladies! I have considered moving my treatment day to Weds. Also, then I don't have to get my kids to therapy that day (its Tues/Thurs from 2-4) I wish I could just drop them off, but a couple of the kids are staggered and different kids are hanging out in the waiting room with me. I guess I could just cancel every third Thursday when I'm getting treatment. Thankfully there aren't very many, right?
Did many of you have a port? My nurse said the one drug (is it the Taxotere? I forget now) really burns going in via IV, and that its up to me if I want a port or not. Do I want one for just four treatments?I will be having steroids with my treatment. Hoping that gives me the energy I need to keep up with life, and get me to the days when I have help. Thankfully three of my kids are pretty independent but I do need to be coherent to keep the ship floating.
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I LOVE my port. Many women on these boards say they cause pain & can't wait to get them out. I'm trying to figure out how to keep mine longer. I even have all the blood draws through the power port, and they add the nuclear media for the PET/CT and the contract for the MRI studies.
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I had a port and was so glad I had one. When my veins hear that a blood draw is near, they seem to just bury themselves. It was never an option for me not to have a port because of the number of chemo rounds I had (6) and because I received Herceptin via a clinical trial. Yes, if you get a port, it is flushed right before the chemo round. Yes, one may taste the flush when the port is being flushed but one can put a mint in the mouth to help with the taste. Since the taste is not long lasting, I never bothered with a mint or any other kind of candy. I used to tell the infusion nurse that it was cherry flavored..... we would laugh...... both of us knew it wasn't cherry flavored. I do someone who had 4 rounds of TC and no port. Sometimes those veins did not cooperate easily for her. With that being said, hydrating starting the day before your round of chemo and the morning of your chemo will help the veins be plump and ready for the poke.
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I did 4 rounds with no port. If you have good veins it's not a problem. I had chemo on Thursdays and the next Monday (today) was the day I felt the worst.
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I had four rounds and have a PICC line in my arm. It didn't require the actual "surgery" of a port but it is pretty high maintenance.
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lespring, welcome! I had a port and although it was a little annoying at first, I was glad to have it. My chemo was on Thursday and days 4-7 seemed to be the worst for me. Chemo was tolerable and manageable for me. Make sure you stay hydrated and rest when your body is telling you to! Drink a lot of water a day or so before and especially a few days after chemo. Flush your toilet twice if someone else is using it. Call your MO at the first sign of a SE (side effect) so that you can keep it under control. I had an arsenal of meds, most of which I never had to use. I hope you do well. Always come here if you need to vent, scream, cry whatever...we're here for you!
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Yes lespring. Keep checking in. You've got a lot on your plate!
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lespring, I am having my final TC tomorrow. I do not have a port. I haven't had any burning with either drug. I did need potassium IV third round, and that really burns, but they diluted it with sodium chloride and it went away. (my potassium was low because I was not able to eat enough for about 10 days). Every round is a little different. The steroids keep you feeling well for about 4 days(including day before chemo). You will probably notice "chemo mouth" day of chemo. Things may taste chalky, and you may not have much appetite. This will lift about day10. There will be a GI component, maybe cramping and constipation or diarrhea. I found these to be pretty minor. First two rounds, I was up and about in a week, and felt great by week 3. Week 3 is the magic week. This last round was tricky. I was unable to eat much, starting with chemo day. After a week, I contracted a viral bronchitis from my 41/2 yr old grandson whom we are lovingly/willingly raising. I spiked a fever and headed to ER, where I had a complete work up for infection, and received IV potassium and fluids. I was placed on antibiotics. I felt as bad as I ever remember. I have been quite fatigued until today. Good news is no bacterial infection, able to eat well for the last 10 days(pounding potassium rich foods), and bronchitis almost gone. Just in time for my last infusion. Hoping for no surprises this time. Cook food in batches when you feel good and freeze. Stock up on what your family likes for "emergency meals". We have Trader Joes frozen pizza and salad for emergencies!
Good luck to all, and bless those taking loving care of their children and parents during this ordeal.
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I am now 5 months post chemo, and just noticed that my big toenails are both turning black and hurting. I wonder if they'll fall off. My fingernails all fell off about 3 months post chemo, but grew back within a month or so. I can't believe 5 months later I'm still getting these weird side effects just out of the blue!!
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Yikes bondsy! I was hoping that in a couple of weeks I'd be home free on those nail and hair side effects! And seeing if my hair starts to grow back!
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OMG Bondsy!!!! One just never knows what those nails will do. I was lucky and had minimal nail damage ( indentions and slight yellow tinge and a little more brittle now). I also iced my nails. I have no idea if the icing helped or if it is because I had strong nails to begin with. Hope those nails calm down soon!!!
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Thanks, Melrosemelrose. I did not ice my nails, wish I had!! I also lost all my eyebrows and eyelashes about 2 or 3 months post chemo, but they also grew back really fast.
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AKJ - you might get lucky and have no nail problems. Everyone is different. I'm just amazed how all these things happened so far after chemo ended. Waiting to see what's next!!
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13 days post chemo and having hair loss sadness. It started yesterday, but just keeps on coming out in chunks. Shower looked like a bigfoot massacre this morning. Looks like I will be having a buzz cut party soon.
It wouldn't be so bad except I cut the bangs on my wig too short yersterday. Oops. I have two ordered so hopefully they arrive soon. Eeeek! -
hi ladies! I started TAC...taxotere , andromyxin and cytoxan as my regimen February 10...dx was dec 17 2013...day after my 54 th birthday ...I had 3 positive nodes and a lumpectomy which I hope to stick with...visiting other docs now to decide of i can safely keep it!
As for Claritin ...I start taking it, loratadine
A few days before shot....although doc said one tablet I asked if I could take an extra half at night for the following few days after neulesta shot and he said I could try it....it helped me and bone pain was less after the 4th treatment! I take it anyway for allergies but it's worth it to ask your doc if that's ok.
Anyone else do andromycin with TC? I know they " threw the Book at me" with treatment...a lot of gals do only 2 drugs...then 12 weeks of the one but I know everyone is different....my 5th treatment is Monday...then June 2 is my last!! Good luck to all...btw....if anyone gets super rashy skin, 1/2 avocado oil ( found in grocery store or health market) and 1/2 coconut oil worked wonders for me!! Rosie
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shanitis...my wig lady shaved my head with a 2 guard...then that was an annoying mess when little hairs were all over the shower, so I gently shaved with electric shaver...no razors...to a smooth bald head and it was better for me ...less messy! I had short hair and prior to bc wanted a pixie so for me I know it's temporary and will grow back...it must be so hard with those who have long hair...I have twenty year old twins and we joke around a lot with the hair thing...here they are "lending" me some of their long hair under my hat...laughter is the best medicine! Remain positive ....it helps so much! Peace...
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shanitis- Just like clockwork, sounds like your hair is making its exit. As I recall, when my hair started its departure, it seemed like it was just everywhere...... on me, on my clothes, on my pillow., etc. I got annoyed after a while with all of the loose hairs everywhere. Thank goodness for my trusty lint roller so I could rid myself and everything around me of that hair!!! You are at a point where I did my last hair cut. That's right..... I put my short bob into little pony tails and snipped snipped snipped. I was alone when I did this and my DH and son were a little shocked when they saw me after I had done that. My DH used his electric clippers with a one inch guard and cleaned me up so that I had a short short boy cut. That was May 2012 and I have yet to require a haircut. My hair has grown back and looks like I've had a layered hair cut. I always view as hair evolution as just a personal science experiment. My onco had told me that I would lose all of my hair and I just wanted to see exactly what would happen. I will also tell you that I did not spend time staring at myself as my hair loss progressed. I know I had minimal hair just by touching my head so there was not need to view it. Just remember, no matter what, you are still beautiful.
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Rosiesride- Welcome!!!! Love that wonderful picture of you and your daughters!!!! I would venture to say that a majority of the women on this particular chemo thread have had Cytoxan/Taxotere only. With that being said, you keep coming back here !!!! As for the hair thing, I had waist length at diagnosis in February 2012, a short bob in March 2012 and then my short boy cut May 2012. My hair that was once straight grew back with a gentle wave. As I said in my previous post, I haven't needed a hair cut since that last cut 2 years ago. The continual change in my hair length since February 2012 has given me a chance to see what I look like with different hair lengths and styles that I probably would never have tried out myself. You are so right..... being positive and hopeful does more than one can comprehend or see sometimes. If you have any questions, you just ask here. Someone will always be here to help point you in the right direction for more info or help. Please keep us posted on what your doctors recommend about any additional surgery. HUGS!!!!
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thanks melrosemelrose! My general surgeon and 2nd opinion breast surgeon are on a tumor board at our hospital comprised of about 7 different docs....pathologist, radiation onc, breast surgeons...they will all look at my path report next week as I am a " difficult" case with no easy recommendation ( but aren't we all?)...if majority feel I am ok with lumpectomy I will keep it but also get an MRI on both breasts...hoping for no other surprises but I am aware of false positives...I have a good medical team and I feel I take charge of my stuff and question when I am confused...they work together on my case so that is a comfort....my gut says keep my lumpectomy ....sorry for long post as I know this is not the board for this discussion!!! So I will ask a TC question: after my 4th chemo, my legs, arms , gluts, abdomen feel like I just had a major workout session ...and believe me, I haven't!! ...so achy and weak!!! Tell me this subsides after treatment is done!! Thanks! Rosie
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Rosie: I had Taxotere/Carboplatin/Herceptin & Perjeta before recurrent surgery. There was not a complete response dissolving the tumors so after surgery I had Adriamycin/Cytoxan. Then rads. Now I'm back on Herceptin for the rest of the year. Ugh!! Hang in there. I visit this thread and the Taxotere thread.
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Rosiesride- My case went several times before the hospital tumor board. My case was presented when I was initially diagnosed and then at my 5th round of chemo to help determine and recommend whether I would have rads or not. Up to that point, I had been told at my first onco appointment that I would probably have the deluxe treatment plan-- a UMX, 6 rounds of chemo, radiation and Tamoxifen.
As for your questions about achiness and feeling like a Mac Truck just ran over you,...... yes.... the muscle aches and pains and joint pains are side effects of the chemo. If you are finding yourself a little winded and out of breathe, that also is a side effect of the chemo. I did notice that as I got further along with my chemo treatments, the more winded I got and got more easily tired. This was in part due to my red blood cell count continual decline. My RBC did not get so low that I required a blood transfusion. Instead, my onco told me to eat foods to help keep that count from declining further. That meant eating red meat, beans, iron enriched cereals, etc. Here is a link to the chemocare.org website ( http://chemocare.com/ ) which you can look up the chemo drugs you are taking. That website was founded by Scott Hamilton, the former Olympic ice skater and cancer survivor. That website along with the main BCO.org website have been very helpful to find out information about chemo. Does that pain go away....... yes it does. After you complete all of your chemo, your body can recover from the chemo. Although it will not be instantaneous, little by little, day by day, things do get better..... you move a little faster, you breathe a little better and generally feel better.
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I was glad to read your post melrosemelrose. I am two weeks out from #3 and still can't breathe well. Had fluids 3x already and am drinking 5-6 bottles of water a day. I am getting worried about #4, I picture myself not being able to breathe at all. Today I was winded from carrying my purse about a block from the hospital parking lot to visit my mother. Have to sit down after climbing stairs to second floor of condo; out of breath; racing heart. After #2 at this point I was fine and making desserts for Easter. Am really worried about #4...I am really afraid I won't be able to breathe at all to tell you the truth. I went in to doctor's two yesterday with this complaint and they didn't test my blood, rbc. At least I know they will before chemo Thursday.
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