Cytoxan Taxotere Chemo Ladies- February/March 2013
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Thanks for sharing your experience Sharon. It makes me feel better.
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SharonDe, I will check out that other forum. Thanks for letting us know it might not be so bad.
I know everyone responds differently, but this is a relief to hear. Fingers crossed!And thanks for the advice, Rosie. I'm down to a couple days, trying to drink a lot of water today but it's not easy to remember to keep drinking even when I don't feel thirsty. I am getting pretty nervous, thanks for the key words/thoughts.
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Hi,
I start my TC Chemo tomorrow
Im 41 and didn't even think chemo was a possibility until they ran the oncoDX test. My score was 31 so a high chance of recurrence. I had a port put in on Friday of last week and Im really nervous about tomorrow. If you girls have any suggestions on what to bring with me to chemo I would greatly appreciate it. Im going to try to continue to work through chemo I just don't know if it will be possible as my job requires me to walk for more than 6 hours a day. 0 -
SueBe, sorry, didn't see your earlier post until just now! Yes, this is quite a ride, and I'm nowhere near done with all the research I want to do before Tuesday. I'm sorry you have to wait another 2 weeks, especially since you are having sad moments. I'm not sure why they scheduled me so quick, but I'm glad I don't have too much time to dread it! Maybe b/c they already had me set up to start radiation sept 8, so the sooner this chemo is out of the way, the less likely they will have to start over with the radiation simulation...? (I already have my tattoo dots & everything.) I don't know. It will be good to get that first treatment over with. I'll keep you posted on how it goes.
Keep your chin up! This is the way we win!
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SDS - below is a link that will detail lots of items for chemo. Also you may want to join the August 2014 chemo thread so you can share w/those in the same place. And maybe read the July chemo thread. Good luck. I always think the imagination is worse the first time that what might happen.
SueBe - if you're going to be taking steroids as many of us do, you will feel better for a couple of days right after treatment than you will day 3,4,5. I did my chemo Wednesday and felt OK through Friday. Crashed by the weekend.
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Make sure you ask questions during your first chemo treatment, and don't be hesitant to call the "hotline" if you have any questions on your side effects. For example, I had no nausea, but suffered for 2 days with heartburn / reflux. When I finally called I found out this is normal and over the counter Prilosec fixed me right up.
As for working through Chemo - everyone is different and some can continue working. I don't think I could have worked much after treatments 3 and 4, but probably could have after the first two (I'm retired, so was fortunate and could just stay home).
Some of the gals in our April thread continued working, and even were able to continue their gym workouts, so trying to stay active is a good idea. But, don't feel badly if you need more rest - we are all different!
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Hey there...do not know if you have already left for your vacation...I am not a regular on this site but all I can say is that it helped me SO much just knowing that I was not alone. This site saved me! I REALLY left alone and that no one understood prior to finding this site! These women that take their time to post comments to any question you may have, truly awesome. I am absolutely no expert, and a little nervous even posting a comment... but here goes! My treatment plan is every 21 days. I have finished 3 rounds of chemo and have 3 to go and as everyone has posted and it is SO true...your chemo side effects are yours and yours alone, do not pre-judge anything! I get chemo on Thursdays, the 1st and 2nd round of chemo I got a tiny bit nauseated on day 5 and 6 after chemo. This last round I got a little nauseated on days 2 and 3! About your vacation plans..What I would say to you is this...If your Dr. have given his/her OK and you feel up to it, I'd say do it! Pack your little anti nausea friends and all other necessary medication of course and go! Especially if you have the help you say you would. I'll be praying that you sail through this and that you get to enjoy your time away and your family. All of these tips these ladies have mentioned are dead on! Small meals, but make sure tummy has something on it! I also google everything....remember to always have plastic utensils! Metal utensils are not fun!Ginger gummies, ginger hard candy in your purse for the road trip! Don't over do it and let your family take extra good care of you! Best wishes!0 -
strongenough...drinking the recommended 100 oz. the days before chemo and the few days after were my biggest challenge!! It helped me to log every type of liquid that I had...coffee, tea, soups, milk in cereal, etc...I wrote in in a daily calendar planner...2 days before chemo and the following week I tried for 100 oz but usually ended up with 80 or so...20 oz bottles of water or vitamin water is what I drank. I think it helped me feel better than I thought I would...so it was worth the effort! Plus my husband was always reminding me to drink...I also have an alarm to remind me on my phone...1:00 and 4:00!! It helps a lot too!
Sdsteph...bring water, music, iPad , book or magazine...I also made juice ice and put that in a small thermos to suck on during chemo. Good luck and it's less stressful after your first one!! Rosie
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Hi all. This is my first time on the boards. I am day 11 after first TC treatment. On day 6, I started having diarrhea. It was severe enough that I went in the next two days for IV hydration and for atropine to try to stop the abdominal cramping. I felt good during these treatments and for a few hours later and then the cramps and diarrhea would come roaring back. By day 9, it seemed to be lessening and I was getting hopeful until I spiked a fever of 102.3. I will skip the 10 hours in the ER story, but needless to say I'm writing this two days later from my hospital room. I'm on two IV antibiotics, waiting on one more result and I'm stuck here in hospital til counts rebound. My doc had held off on Neulasta during first round but they started me on neupogen when I came in for my first infusion of fluids and my counts were low. I've had three shots of neupogen now. My biggest fear is going through this each round hereafter. I'm sure that my doctor will give me neulasta going forward so my counts won't plummet so much, but the diarrhea may have just been from the Taxotere. So, I want to find out if there's any way to avoid that next time. Thoughts?
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SDSteph06, I also found out after thinking I didn't have to do chemo. It is a big shock and I am still trying to get my head around it. I am overwhelmed too. I heard that after the first treatment you will know what to expect and will feel better.
I hope it goes/went well for you today.
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SDSteph and SueBe, ditto, shocking and overwhelming. I had been told all along, from original Dx through sentinel node biopsy, right up until my first MO appointment, that I would not need chemo b/c my tumor was small, early stage, and no lymph node involvement. When the MO wanted to order the oncotype test, it was like a punch in the gut. I stewed about it for 2 weeks or so until the results came back. My score is 20, so the MO came in & asked me what I wanted to do. I was thinking, I want to click my heels together 3 times, go home and this never happened! Being on the low end of the grey area, I did have a choice, but I really don't want to do this ever again, so decided to go ahead & do everything possible to minimize future risk.
Also, I went over and joined the August 2014 group today. SDSteph, I think I saw you there also. Good luck today! SueBe, if you haven't checked that out yet, there are some good resources there and only 30-ish pages to get through, not 600+!
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StrongEnough13, You are doing the right thing. I was diagnosed the same as you were back in 2008. I had oncotype score of 23 and didn't do chemo and only took tamoxifen for 1.5 years. This new tumor may have been avoided if I had done the chemo back then, or so says my MO. Anyway, you are doing the right thing for yourself.
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Greenwichvillager,
I completed TC treatment back in November. My MO also wanted to skip the Neulasta because "I was young, healthy, and would tolerate it fine." I ran fevers through the first 2 rounds and asked to come in for blood draws...he would not let me because it was 0.1 degree away from the cutoff of having me come in. Round 3, it spiked much higher and I too was admitted with zero neutrophils and a high temp. I was in for 4 days, gettign Neupogen each day, before my counts suddenly rebounded. My last round I got Neulasta. I did continue to spike fevers, but this time my blood counts were OK so I did not need to be admitted. Once they knew my blood work was OK, they let me take Ibuprofen which at least made me feel better. I hope you will receive Neulasta in future rounds so that you can stay out of the hospital. I'm sorry you landed there. As far as the big D, I would keep a journal of things you eat each day and see if anything makes it better or worse...and ask MO for advice on what you can take for diarrhea. There should be something they can prescribe for you.
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Greenwichvillager- Welcome.....
Sounds like your first round of chemo hit you hard. It happens and so you are smart to start thinking about what you can do to help with the next round. Not unusual for your gut to take a beating from the first round. I had slight diarrhea after my first round. You may want to talk to your onco about what you can do to help hedge the diarrhea ( ie OTC drugs ) You may also want to ask the onco if the amount of Taxotere needs to be reduced a little.
I usually ate some very bland food the days following chemo..... nothing spicy. I ate baked potates, mac n cheese, baked chicken, baked fish ( aka as my "white meals".) I also know that drinking fluids is not easy to do but a necessity while in chemoland. I had two 32 ounce Nalgene bottles that I drank out of everyday. For some reason, I could handle drinking two of those versus drinking 8 eight ounce glasses of water. You can also get fluids in through eating watermelon, grapes, popsicles, gatorade, fruit flavored water, soup, etc. I was also given a book "Eating Well Through Cancer:" by Gerald Miletello MD and Holly Clegg. This book gives recipes, shopping lists, menus and tips on how to handle some of the side effects ( constipation, diarrhea, mouth sores, etc) and made it easy for me to look up things when I just didn't feel like searching on the internet/bco for some help. As always, if you have side effects and can't get a handle on them, do call your onco to get some help. It doesn't matter what time of day it is or what day of the week it is, there is always a doctor on call to help you 24/7.
As for the spiking fever, sorry you had to go to the ER. I developed a high spiking fever and body chills about 10 days after my second of chemo. Fortunately, my onco kept me out of the ER and prescribed two very strong antibiotics. My WBC came back up to the normal range for the 3rd round of chemo and I began to have a Neulasta shot after each round of chemo starting with round 3. I also took a regular 24 hour Claritin the morning I received my afternoon Neulasta shot and for at least 7-8 more days. I never had any bone pain relating to the Neulasta shot but yet still had muscles aches and joint pains from the chemo.
Hope you start feeling better very very soon.
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Found out today that I'm joining the TC family on August 21st. I'm so nervous, and it's scary as well since I have no clue what to expect. A high intermediate oncotype test score of 30 is what brought me here. And in addition to facing breast cancer for the second time around after 13 years NED, I think chemo is best so that I can reduce my risk of recurrence to the lowest percent possible.
Has anyone else had their port placed in their arm? That's where mine is supposed to be placed on Monday. If so, how is that working out? Is it aggravating or annoying?
So thankful for all of you sharing your experiences with this cocktail of drugs. I plan to dig in and read your posts, learn from them, and also share my own experiences as I start this chemo journey.
One love,
tp4ever
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thinkpink4ever...sorry you need to do chemo...13 years later...the meds available to help with SEs are probably more advanced then years ago!
I had the port in my arm...for me it worked fine...it just took a few days to get used to having it ... I had lymph nodes removed from the right side and port on the left, so they had to do blood pressure on my lower left wrist due to port, or on my calf...if that is a problem for you, then maybe opt for the chest? That and snuggling with hubby as both arms were effected from surgery and port! Just had to find a comfortable position...lol. Good luck to you! Rosie
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think pink...I see you had lumpectomy your first time around.... Now mastectomy...I struggled with the decision to keep my lumpectomy and decided to do that rather than mastectomy...I am not ready for all the surgery and had to deal with treatment and for me at this time it is the right choice.
Now, since I am only finishing up treatment this week (woohoo), I know it will take me awhile to get to the point where I will not think my bc will come back. But honestly, I think it's a crapshoot..I too would get a bmx IF it comes back...or if the worry from check ups becomes too much for me.
Chemo is doable...I had TAC all 3 drugs together...drink a lot of fluids...100 oz. at least a few days before chemo and a few days after...optimal if you continue to drink that much every day but it was hard for me! I ate well so I never got super sick...took those nausea pills if I had a thought I felt nauseous then I slept...for me my chemo treatments left me feeling flu like...neulesta shot gave bone pain but 1 1/2 Claritin pill 2 days before and 7 days after shot helped...I took it for allergies anyway...on reading other posts, some MO's held off on the shot...I had it from the get go and my WBC was always ok and I only had a temp on my 5 th treatment...he prescribed antibiotics ASAP and then I was ok....
Once you get past the first treatment, you will kind of know what to expect and the fear will subside...those nurses are SOOO attentive and watch everyone so closely...I felt well taken care of during chemo and I hope you will too!! I called my doc on times I felt weird side effects or had uncomfortable rashes...he lowered my dose two times with TAXOTERE...
I also read my book Jesus Calling and for me it helped...Rosie
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Thanks, KBeee and Melrosemelrose. I spoke with my oncologist yesterday and he said we would certainly have me prophylactically take medication for diarrhea going forward. We didn't speak yet about Neulasta but I agree that's where I'm headed which is a little frightening too from what other people have told me. If I have a similar reaction next round, then we would consider a couple of options: switch from Taxatere to Taxol or bring down the dose of chemotherapy.
Interestingly, since his visit, I learned that I tested positive for C-diff which is infectious. We don't know if that caused the initial problem or compounded it. So, I'm going to hold out some hope that this won't happen on round 2. Fingers Crossed!
And thinkpink4ever, you will be following just behind me, so you should know that if my severe diarrhea is from the Taxatere, that is supposedly a possible but very uncommon reaction. Good luck. I decided to go without the port for now, so I cannot offer any insight on that.
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greenwhichvillager...hope things get better for you...I had TAXOTERE lowered two times over course of 6 treatments...one for the rash I had and watery eyes, which I didn't think was so bad but MO knew it could be better! And when I had a little numbness, neuropathy feeling he lowered it...glad he did cause I still have weird feeling in feet legs and arms and if he didn't lower it I wonder if it would be worse! That being said...you must call doc for side effects even if you think it's not too bad and that's just how it is...my sister encouraged me to call when I had a small line of rash on my feet that itched terribly...it looked like nothing but felt bad! I went in and he lowered my dose.
I had neulesta shot from the beginning...I took Claritin and then after 2nd treatment decided to take 1 1/2 pills and I was much better with bone pain...I only had a fever on my 5th treatment and I think having neulesta really kept WBC up so I never landed in the hospital with fever...but so scared when I did have one. For me, I would want the shot! My chemo experience was like haing the aches of a flu and being super tired...
Good luck! Ahhhhh....late for PT! rosie
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Hi All- Hav my final meeting with my MO this Thursday. I'm sure start date will be in August, just need to find out exactly whih day. I was already told Cytoxan an Taxotere 4X. I am just now reviwing all your posts for as much info as possible. This may seem like a silly question but why the Claritin? Also, If given the option of IV or port what makes one choose one over the other?
Thanks for any advice for this newbie:)
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Welcome barremom64---
The Claritin is used to help with the bone pain associated with the Neulasta shot. The Neulasta shot is the bone marrow shot that given 24 hours after having a round of chemo. The shot is supposed to help with the production of white blood cells which take a beating from the chemo. Some patients are told by their oncos before they start the chemo that the patients will receive a Neulasta shot the day following the first round of chemo while other oncos tell their patients that they will receive the Neulasta shots only after the patients have demonstrated a true need for the shot. I started receiving Neulasta shots after my 3rd round of chemo because I had developed a high spiking fever/chills 10 days after my 2nd round of chemo. I received that shot in my tummy where I had some body fat and where I knew I wouldn't be sore after the injection. There is an on going clinical trial to determine whether the Claritin does prevent bone pain. Here is the link for that: http://clinicaltrials.gov/ct2/show/NCT01311336?te... . Make sure you check with your onco before taking any OTC drugs while having chemo.
According to the drug protocol of the clinical trial, one takes one regular 24 hour Claritin ( NOT Claritin D) for 7 days commencing with the day that one receives the Claritin. I took the Claritin the morning that I received my afternoon shot of Neulasta and continued to take it for 7-8 more days, I was fortunate and did not have any bone pain from the Neulasta shot but did have muscles aches and joint pains associated with the chemo itself.
As to whether one gets a port or not is not always a personal decision. Sometimes, the oncos tell the patients that they will be getting a port and others let the patient decide. You may want to consider how easy it is to access your veins for blood draws. If you have issues like I do with vein access, then you may want a port. My veins seem to bury themselves deep whenever they know a needle is approaching ( lol). I had 6 rounds of chemo plus Herceptin via a clinical trial and so the port was absolutely necessary. Yes, it was uncomfortable/sore right after I had the port placed but I had been warned by my BS that the area would be sore for about 2 weeks. ( My port was placed when I was having my UMX ). If you get a port, be sure to ask your onco for a prescription for EMLA cream which is lidocaine cream. You would apply the cream at least an hour before the chemo infusion. It numbs the area so you don't feel the poke.
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I love my port. In fact I've been trying to convince the MO that I need to leave it in "just in case" after I finally finish 18 months of continual treatment the end of September. It's between my collar bone & my implants. I drew on my skin with magic marker where the bra sits so BS could place it accordingly. I thought they only did Pict lines on the arm, but I know a Port on my arm would have driven me absolutely nuts.
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Speaking of infusion methods, i had a needle poked in each time i went for chemo (4x) and still many more herceptin cycles to come. I chose not to have a port because the thought of another surgery and scar is just too much for me.
I'd like to share on the SPEED of infusion into my veins because i think this is very important. Especially in relation to cyclophosphamide. The first infusion, a nurse injected the drug within 5 mins (despite telling me it's a 20min infusion where she has to slowly do it and test and balance saline manually), The second, due to my concerns and request, the head nurse did it in 10mins because she simply doesn't have the patience. The third time, a nurse, following all protocols did it in over 20mins. Guess what??? The first vein never fully recovered.. it used to 'bump' up and is visible.. now it's hardly visible. The second vein "sunk in" but looks recovered now. The third vein not only recovered within 3 weeks, it was USED again for the fourth round of infusion, and now it's still looking good, because i requested the nurse who did the third round to do it for the fourth. She was the only one who had the patience to do it properly.
If you're concern with veins, do, do, do ensure that the nurses follow protocol and infuse cyclophosphamide as slowly as possible, with adequate saline flush.
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yensmiles- That is really interesting about the infusion speed. As I recall, during my chemo infusions, the Cytoxan was run over 40-45 minutes, the Taxotere for at least an hour and the Herceptin was for an hour. I asked that that Herceptin be run slow so I would feel okay after the infusion.
For the Newbies - The first round of chemo may take a little longer than you anticipate. This may be because the infusion nurses want to run chemo slower so you can be monitored for any immediate reaction. Just be prepared to spend time in the infusion center and try to keep calm and patient.
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I'm struggling with the port question as well. I had my 1st treatment yesterday in a vein, and it seemed to go fine, but the nurses are concerned for 2 reasons, 1) what if I get sick & need hydration or something, but I have only the 1 good arm b/c of lymph node removal on the other side, and 2) the extremely toxic nature of these drugs (or at least one of them, I'm unclear) to the veins. I have only 3 more treatments, and tend to shy away from extra surgeries as well. As I understand it, one to put in the port, another to take it out. But all my nurse friends at work (I work for a Medicaid HMO, hold your boos & hisses, please, it pays the bills, mostly
) unanimously recommend the port, both from personal experience and the nurse perspective. Also, I really like my surgeon, and have full trust in her. Just got a message from her office to schedule the port placement, I suspect... I guess I'm leaning toward doing it. 0 -
I think it is like a lot of things with all this mess we have to decide what is best for us once we get all the info and doctors opinion/direction and then just breathe as we take another step. I didn't do the port because I just couldn't handle another surgery and scar. I just was not emotionally able to handle it. I had four infusions and I did fine. I had a couple nurses question that decision but my MO agreed that it was ok that I did not do it. But I know a lot of people have them and are glad they do. Good luck with all of it and know you are not alone.
Have a great day everybody! Hugs
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I also skipped having a port, and had no issues (4 infusions). I made sure to drink lots of water 24 hours before, and the nurses also put a warm towel on my arm before doing the IV.
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StrongEnough- Sometimes the port placed in conjunction with a surgery ( ie mine was placed when I had my UMX) while others have it under twilight sedation and some even have theirs ports placed at a radiology department. When I had my port removed, it was considered day surgery and I was given light anesthesia so I slept during the removal and woke up an hour or so after it had been removed. I know it isn't easy to decide about whether to have a port or not and it is a very personal decision. If you opt to have one, talk to your doctor about exactly it will be placed since you may want to make sure that it is not placed where your bra strap may hit.
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My MO really stressed a port - particularly since I'm HER2+ and still having infusions for a year. And the first chemo didn't shrink the tumor so I had to do another kind after ALND surgery. 6 chemo + 12 herceptin + another 4 chemo + blood draws at least every 3 weeks for 18 months + contrast MRI fluid several times + PET/CT nuclear contrast 3x, + I already had some LE from my BMX in 2011 - it was a no brainer for me. Port surgery was less than an hour & they left the "tails" dangling for the first infusion. I've never had any pain or even discomfort.
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At the time of my first chemo treatment, the nurses in my practice questioned why I had not gotten a port. But my MO had never mentioned getting a port once we decided on TC as the treatment protocol. He had said it would have been a must for ACT (though I have friends who had that and didn't gave a port). Then when I came in for my first day of hydration, the nurse who hooked me up asked if they had scheduled me for a port. I had a second day of hydration, and the nurse didn't berate me after I mentioned that everyone was giving me a hard time. Then I was hospitalized as described above and I have to say that it was not easy with only one arm to choose from because the IV site had to be moved at one point when it looked like it was starting to infiltrate. But, as I sit here today hopeful that I won't go through all of that on round two, I think I only have three more rounds, so I still hope to go through without it. I'm going to double check with my MO just to be sure that he's still comfortable with no port, and if he is, I'm going to stick with the peripheral IV.
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