Cytoxan Taxotere Chemo Ladies- February/March 2013
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Deb, the taste issue just seems to be right after treatment, but I think is cumulative, right now I just finished my Ben and Jerrys, before I have my treatment tomorrow. Last time it was about a week, so am assuming it will be at least that long.
Vanmama, so sorry to hear about your reaction to the drug. I hope you find a good solution.
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DebAlane-
We just wanted to welcome you to our community here at BCO! We're glad you've joined us, and hope you find it to be a supportive and informative place. You're in the right place for advice, that's for sure!
Please let us know if you have any questions, that's what we're here for!
The Mods
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DebAlane--Right now I am sitting in the chair getting my final TC treatment. Don't worry about the actual infusions , they are fine. In fact they can be kind of boring. If you are worried about the hair on your head you could look into cold capping. There are costs and it is a bit of work prepping and actually wearing the caps on infusion day, but I think it is worth it. At this point I've only lost about 15-20% of my hair using the caps. Not perfect, but most people don't even notice. There is a Cold Capping group on the boards here if you are interested in seeing what it's all about. Or you can ask me anything. I can also pass on my routine if you are at interested. I know everyone says you can do this, but that 's because it's true. As they say on "The unbreakable Kimmy Schmidt": " Females are a strong as hell." --Bethany
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Afternoon Ladies!
It's been a while since I visited the site! Congrats to all who have finished their chemo, and best of luck to those beginning! Thought I would pass along some of my SE and what has seemed to help. One of the reasons for not being on the site for so long is that ever since the 2nd treatment, I seem to be "zoning out" in a fog or just sleeping! Sleeping and just resting does help the exhaustion the most, as tough as that is to do! When they tell you that the SE can be "cumulative", in my case, they were not kidding. Extreme exhaustion seems to be the worst thing for me. After each treatment, the exhaustion takes hold more quickly, and lasts longer. Lately, it takes me all morning just to feed 4 dogs and 3 domestic birds. I am very blessed that I am retired, and have no little ones, because not sure I could deal with them! I have spoken with the professionals several time about the low grade temp that seems to live with me other than the days I am on the cortisone prior to, during, and just after chemo. They just keep saying if the temps don't go over 100.4, don't worry. They did put me on 10 days of Keflex when I got a NASTY case of folliculitis on my scalp after treatment 2. It got rid of the mess, but the temps...98.7-99.9, usually, never did go away! My blood counts are pretty much normal, so I don't know. At the same point in time after treatment #3, which was a few days ago, the folliculitis showed back up, but not as bad. Plus, I have developed an irritating cough at times, so I have to go see the NP tomorrow. I think the cough might be post nasal drip going on since Spring has sprung in the Midwest, and I do have allergies and a runny nose. The nausea has been kept pretty much at bay, so I am very grateful for that. A good friend of ours said that what helped his extreme exhaustion was drinking Ensure a couple of times a day. Going to try that beginning tonight. Getting those meals frozen for a quick dinner is one of the best things to do. Also, relying on friends and family for household help and meals is soo helpful. My nails seem ok so far, hair fell out exactly when they said it would...about 14 days after 1st treatment. The truly most frustrating thing for me is the exhaustion...it is so weird. Almost done with the chemo part of treatment...April 20th is the last one, so now that there is a light at the end of this tunnel, bring it on!! Will start rads in early June for 21 treatments. So hang there, girls!! Friends and family will do so much for you, and you all concentrate of fighting!
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Hi all -
This (TC) is the protocol my oncologist is recommending. I am starting to freak out a bit though when I see that 6 % chance of never getting your hair back. What has been your experience. The secondary recommendation would be AC-T dose dense.
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melb44, I finished TC Feb 5th, my hair is starting to come back.. my MO said that its very rare not to get your hair back with TC. I was more worried about the heart damage from ACT since I have high blood pressure...
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Thanks for your reply. It is good to hear from people who had a good experience. I am trying to decide now whether I should try to cold cap.
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melb44- While I was in chemoland, I was never totally bald. I had what I call a very very thin veil of scant hair on my head. I never had my head buzzed. The last hair cut I had was May 2012 when I got a very very short boy haircut. I just let my hair do whatever it was going to do and let the hair fall out become my own personal science experiment. I wore baseball caps, straw hats from Target, Ross, Charmin Charlies and bandanas. It was just too hot to wear a wig plus wearing a wig just wasn't me. I haven't cut it since May 2012 and my last chemo was August 2012. t is now few inches below my shoulders, a little thinner in texture and now a a little wavy. I have been fortunate in that my hair has come back in its original color and evenly. If you are wondering about the eyebrows and eyelashes, my eyebrows started to disappear around my 4th round of chemo. Only my bottom eyelashes fell out. FYI: the eyelashes and eyebrows are on a different growth cycle than head hair which may explain why those don't fall out as quickly as one's head hair.
If you are planning to try the cold caps, go to the cold caps discussion threads.You can go to the Important Links for Newbies About Chemotherapy ( https://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1 ) You will find information and support there. I know that the hair loss from chemo is not easy to deal with and it is very very personal. As you will come to understand, there is no right way or wrong when it comes to dealing with the hair--- the only way is the way that you can handle the best. No matter what you decide, always try to remember that you are still beautiful and will get through chemoland. Wishing you the best.....
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My final infusion was Nov 25, 2014. My hair started coming back quickly and evenly. A few weeks ago I stopped wearing scarves. My new growth is curly and much lighter with a lot of red.
TC is a less harsh protocol than AC-T.
Tomorrow I get my port removed. Hope it's a quick and easy procedure, as it is supposed to be!
The ladies here made my trip through chemoland so much easier!
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Lots of tugging...had to ask for more lidocaine.
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Nice to see you again PoppyK!!! Good luck with your port removal.
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I am new to the boards here and have just started the T/C treatment protocol. Glad to learn of other ladies on this journey right now.
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Welcome anniekay, lots of great info and support. Please ask and share whatever makes you comfortable.
Melb44, I consider myself lucky that I able to choose TC, and I've had a pretty easy time of it, all things considered. It's taken me longer to bounce back after #3, still bouncing back actually. The ATC seems much worse, at least from what I hear and read of other posts. My mo and I decided together. Glad she listen to my concerns.
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Finding this forum and reading through the comments has been so theraputic for me. I'm Newly DX January 2015. I am on Cytoxan and Taxotere for stage 3 grade 3 triple negative w/node involvment.
My first 3 chemo rounds were unpleasant but tolerable. It was this last 4th round that brought me to my knees. Just blew me away. The fatigue is debilitating. My muscles ache - getting up off the couch and walking 10ft to the bathroom requires a heroic effort and leaves me winded and panting. I am completely dependant on others for my care.
I called my doctor after this 4th round to ask about this level of fatigue- he wanted me to come in and recheck my blood counts. This level of fatigue could be low RBC requiring a transfusion. My CBC showed below normal RBC but not low enough to be worrisome or warrant a transfusion.
I've been planted on my couch for 2 weeks. I make an effort to walk around the kitchen island once an hour just to get my blood pumping. Before my diagnosis, I power walked 3 miles a day. I keep thinking I'll wake each day a little stronger and I don't. Getting out of bed and getting dressed is painful.
My eyes are a swollen, tearing mess. I saw an ophthalmologist yesterday who prescribed me steroid eye drops for inflamed ducts and dry eye.
I know many of you have had the exact same experiance, so I'm looking for advice or coping tips. Here's my big fear: If I'm this incapacitated/weak with chemo round 4 (my husband is considering renting a wheel chair for me) how can I possibly handle 2 more rounds? I go back in next week for round 5 of 6.
Thank you for making me feel like I'm not alone- I'm still like a deer in the headlights. Any advice appreciated.
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I was wiped out for round 4 as well. I asked my MO if I could have six rounds as I had read about some having six rounds. He said he wasn't sure about it for me... wasn't sure that there was benefit to it plus wasn't sure about the potential long term side effects of adding two more treatments. We ended up with not moving forward with 4. Honestly I don't know how I would have made it through #5 if I felt as bad as I did with #4. It seemed as though everything was so much worse and lasted for three weeks before I started feeling better. My nails on my toes hurt..I had inflamed back of my heels which ended up like dried blisters and peeled...my taste was totally gone. The only thing I could drink was lemonade and pepsi with lemon. I was stage 2a, 1 node positive, 11 mm idc, grade 3 with lvi and the node had extra capsulated extension. they took 17 nodes in all. ER/PR positive, HER2 neg. I had a choice between ACT or TC. It was hard and I kinda wished he had said to do the 5th and 6th rounds. But not sure what kind of long term side effects he was talking about. I am now on hormonal drugs, that might be the reason you are doing 6 as opposed to 4. You are not alone...I know what it feels like, if your MO thinks 6 should be done, discuss it with him, do they ever lower dosages to make it more manageable.?? Good luck with your next treatment, I wish you well. You need to do whatever to fight this!!
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thank you Thinking Positive.
Speaking of thinking positive, since I started chemo, I often say out loud, "I CAN do this". I also say out loud "I'm a champion!" This may sound corney but I'm doing everything I can to stay motivated and positive.
With triple negative, I'm not a candidate for hormone blockers post treatment. That's why I need 6 verses 4 chemos. And yes, as I've been reading here, I'm not alone. This thread has been helpful because I have met people who went through chemo and continued to work or do yoga thru out chemo. Then here I am struggling and fighting to put on a pair of shoes. Im actually less scared reading comments here. Thank you!
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Rinnyrose, your SE are exactly like mine plus I got neuropathy in my feet. When I went in for #4 the MO said I could skip it, but I told her I'd walk through fire not to get the cancer back. I can't get my shoes on by myself as am too stiff to reach my feet, but had been active like you before. Would discuss with MO to see what the limit is. Mine said if I got a neuropathy she would stop Fortunately that didn't happen until my final infusion as I was only scheduled for 4 rounds
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Rinnyrose- I had 6 rounds of Cytoxan/Taxotere chemo regimen. As you have probably read in different places, the side effects of chemo are cumulative. Of course, when i read that statement, I had no idea what that really meant until I reached that point of feeling extremely fatigued. I do recall feeling very very tired after Round 4. There were times I had just enough energy to walk to the couch and sit down. As for the muscles aches and joint pains, I did have those. I made an effort to take my time getting up from sitting or standing or getting out of car. There were times I didn't feel very steady on my feet. My RBC was dropping but not enough to warrant any iron infusions or blood transfers. I adjusted my diet to do what I could to increase my iron intake by eating more red meat, iron enriched foods like cereal, etc. I was short of breath and had a racing pulse that was checked out by my onco and internist. My eyes used to tear up like running water faucets and then sometimes would get dry. I used some prescription lubricating eye drops to help with the dry eye. Life in chemoland at that point was at a snail's pace. I did my best to accept that I having good days and also some not so good days. I know it isn't easy to keep pushing forward at this point in your chemoland time. If you are wondering what I did.... I did what you are doing now..... getting up everyday and making an effort to keep moving and pushing forward. It is okay to say that you are tired of all of this and it is okay to wonder if you can get through the last 2 rounds. Yes, you will get through those last 2 rounds. It has been 3 years since I had my first round of chemo. When you are finished with all of chemo, there will be a day that you look back and wonder in awe how you ever got through this time in chemoland. There many of us waiting on the other side of chemo. Hang in there!!!! Sending many positive thoughts and energy your way and encouraging (((HUGS))))!!!!
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Today is a better day. Walked the dog a block each way. Still can't get the shoes on myself, but not so short of breath. Have to keep paper napkins in my pocket as the eyes just pour like faucets more today than ever Will take a good day with mobility and roll with the rest. You never know what you will wake up with as this stuff works it's way through. My friend trie to keep the kids positive about it. When she had a SE they said "yay it's working to get rid of Mom's cancer! " Trying to look at it that way too and say to myself " that means it's making me healthy!"
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Got a neuropathy with the final (4th) CT infusion. I know a certain % of people never totally have is go away. Wonder how long it lasts if temporary. Toes are numb making balance an issue
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Does anybody else have sore teeth? I feel like I keep getting my braces tightened, sore up in the roots. Gosh I hope my teeth don't fall out!
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rinneyrose....i am 11 months out from last chemo treatment...I had 6 rounds of TAC....I look back now and can hardly believe I went through all that last year! I believe drinking the water helped a lot for me. I couldn't walk far at all...to my mailbox if I had a good day! It wasn't until January that I had a burst of energy and began walking for exercise at my beach....I returned to teaching after chemo and rads was over in august 2014....kindergarten! I just want you to know that it really does get better but it takes time. I told myMO about symptoms of neuropathy and although he wouldn't eliminate any rounds, he did tweak the dosage of TAXOTERE ...that may be an option....good luck and it will all be over soon!! Rosi
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Marksgirl- About your tooth pain...... is it your jaw that hurts or your teeth actually hurt? Are you receiving a Neulasta shot the day after your chemo infusion? If it is jaw pain, you could be experiencing a side effect from the Neulasta shot.
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Melrosemelrose - Thanks for replying. it is actually my teeth - top mostly, above the gum line. They feel just like when I was a teenager after the expansion appliance on my braces. I just found someone on Taxol reporting sore teeth, but good thought on the Neulasta. Who knows?. At least there is not a big search result on teeth so losing them does not seem to be a problem. Phew!0 -
Marksgirl- You may want to mention the "teeth hurting" side effect to your onco at your next visit and hopefully before your next round of chemo. Hope everything else is going well for you and your other side effects are minimal!!!
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hi marksgirl, good to meet someone from NY! What part are you in, I'm in NYC. Wonder if taking biotene would help with the sore teeth.
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Hi ladies! I'm doing my fourth round tomorrow of TC chemo. I'm so torn on why they think I need six. I've read that there's no diff. My oncologist said its because I'm young (43) and had a 1.8 grade three tumor. I also had just one lymph node positive. My oncogene score was 26. I guess I just answered my own question. However, I've read there is no difference just higher toxicity. Please let me know your thoughts. I take vitimin e for nueropathy. It seems to work!! I am also doing the polar caps and have my hair!! My nails are also strong as I take supplement for them. Any info and thoughts would help!!
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Beatcancer4,,,I was told there was no difference between 4 or 6. I had only 4 rounds. I asked for six. My MO told me that he thought I was okay with 4, and that he did not think there was a benefit for me doing 6. I always worry. I am 58, Stage 2A, 11 mm IDC, Grade 3, LVI, 1 node out of 17 positive, but it was 8mm in the node and ExtraEncapsulated Extension. My MO did not send mine out for Oncotype, he said it would probably come back high..so not knowing enough, I agreed. Wish I had had it sent out. I was given a choice for regimens..AC+T or TC. Due to heart problems that can occur with ACT I chose TC. I kept worrying about my choices and the fact that I did not have 6 treatments of TC. Treatment # 4 was worse than the others...but I got through it...side effects lasting longer, more tired, could not taste anything for almost. Good luck with your 4th round. You will do fine. I really wish I had pressed for 6.
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Beatcancer and Thinking Positive, that's a familiar story. My MO and I talked about doing 6 rounds and he said that there's no evidence that 6 rounds is better than 4 and it increases your risk of leukemia, infections and long term neuropathy. I also was given the choice of TC or AC + T and chose TCbecause of the risk of heart damage with AC+T. It's now almost a year later and I'm feeling really good. So hang in there Ladies. Think too shall pass
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Ladies, I echo what AKJ said; I completed my TC regimen a little over a year ago. It wasn't exactly a walk in the park, but not as bad as I had anticipated. The fatigue, shortness of breath and heavy legs at the end were hard. The other SE's were no fun, but minor. It just seems that they all came at once. Be kind to yourself, hydrate, walk, even for a little bit; don't be afraid to ask for help! It took me almost a full year to feel back to normal. ((HUGS))
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