Anyone on just Taxotere and Cytoxan?
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Wishing everyone a safe holiday weekend. Hope everyone is taking it easy...HUGS & SMILES to everyone.
Nadine
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I cross-posted this on the March chemo board:
I was told by my onc and infusion nurse that standard protocol for Tx #3 of TC is to speed up the drip if the patient has not had any adverse effects from Tx 1 & 2 (typically run slower). My Tx #3 was very bad...a very bad reaction. They had sped up the drip (and forgot the Benadryl, which made things worse).
I just had #4, at a much slower drip, with no reaction.
If you are concerned about a reaction from here on in, just ask the nurse to slow down the drip (or the onc may have to give the order, not sure). The only difference is how long the treatment takes.
Just my $.02, for what it's worth!
Nadine
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Nadine- those sneaky bums! That makes SO MUCH SENSE. Didn't pay any attention to the drip rate during my 3rd tx, I was there for 7 hours because they were so backed up, the pharm. lab was slammed and 3 nurses were out. I just wanted to get out of there. I'll bet they cranked up the drip and didn't even tell me. Out of the 4, the 3rd was for sure the worst one for me. So glad you posted that info, it'll help those who haven't reached #3 yet. Everyone listen to Nadine!
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Nice catching up on this site. I just finished my 6th and final TC on Wed. So very glad to be done. For me it's hard to say which round was the hardest. I journaled about 30 different SE throughout the whole chemo experience but honestly I don't think any of them were totally overwhelming. The last couple of TX didn't bother my sleeping to seriously at all. After TX 4 I had a lot of nose bleeds but nothing since then. I'm 2 plus days out now from treatment and don't feel much going on yet. I expect to by tomorrow or perhaps I'll just fly through without anything major. Anyways it's delightful to be done and I send my best wishes to you all to get through this easily and quickly. (looks like most of you are on for a 4 tx regime, how nice)
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Hi, Suzanne!
Congrats on being DONE!!!!! Yay!
I'm in for two more rounds still, 6 total as well. Had too many positive nodes, so onc wanted to hit it hard. He made some baseball reference that went straight over my non-sports-fan head, and I just nodded and said, "great, when do we start?" LOL. Now, I've been telling him how old this is all getting and "when can we be done???"
Very soon...
Nadine
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ann-idiot:
Exactly. Sure would have been nice to know ahead of time that the drip gets ramped up at #3 and that things might start to get hairy for some people. I would have told them straight away...forget it. So what if I have to sit in this chair longer. SLOW.
Nadine
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Slowing the drip does work. I had a very bad reaction to taxotere the first round, second round was better because they pumped me full of benedryl. I still had a reaction on the second but the drip was slower, the benedryl was working and they gave me ativan when I reacted. The nurse wasn't so nice about it though. My cousin (who goes with me) was so mad at her. She kept telling me that I was making the reaction worse because I was so panicked. I can't help how I react, especially the first time when I could have died. yes, I freaked out - the second time I was almost asleep from the benedryl and then I got this unbelievable itching from head to toe, concentrated in the goin area of all places. I didn't even really know what was going on because i was so out of it from the benedryl so I freaked. I guess she would have been cool as a cucumber if it was happening to her - oh wait, it wasn't happening to her and she doesn't have cancer. I think some people are in the wrong jobs. That's my sob story for the day - I felt bad for myself for two seconds and now I'm back on track! Thanks for listening and good luck to all of you who are going through this.
P.S. You all look so good bald. I was surprised how good I look too as a bald lady. I'll take a picture soon!
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Sukiann,
Thanks for sharing your story. I was starting to think it was just my onc who responded that way...the other day he said to me, "funny, as soon as I mentioned that I was going to send you to the hospital, you seemed to get much better." In other words, he was implying that my reaction to the fast drip and LACK OF BENADRYL (that HE forgot to order in my pre-meds) was all in my head, or somehow within my control to stop. I was furious.
I specifically recall shaking my head "no" to the idea of the hospital because I knew I just needed some time for the Benadryl (given AFTER the reaction started) to start working.
I would have so much more respect for him if he just took responsibility for his error and then we could move on. But to imply that it was my doing was ridiculous.
Sorry you had to experience that lack of professionalism as well.
Nadine
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Suzmarks,
Congrats on finishing! You did it. I hope that you will have minimal side effects this last time.
Nadine, ann-idiot, Sukiann,
I had a bad reaction during my 3rd TC also. I broke out in hives 40 minutes into the taxotere. The infusion was stopped and I got Benadryl IV. I hadn't been getting Benadryl for the first 2 infusions. Then when I got the Cytoxan, I had chest tightness in the first 5 minutes of infusion. The infusion was stopped for about 10 minutes, then they slowed down the rate of infusion from 30 minutes to 50 minutes. After they did that I didn't have any more reactions. I'd have to say this 3rd one has been the hardest also with the side effects. I'm feeling the muscle aches, fatigue, nausea, hives, and swelling much more. I'm calling it quits after 4 rounds. My onco still wants me to consider 6 treatments. But I told him I'll let him know since I'm the one getting the chemo.
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For those of you who get bad stomach cramps as I do and are tired of all the meds, consider taking Glutamine by Metagenics. It is a nutritional supplement that is okay to take while on chemo.
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Hi everybody. I have to admit that at first, and before I started my chemo, I was too freaked out to read much of this discussion out of fear that the many SE reports would make my own experience too terrifying. Now that I'm headed for my last #4 I'm amazed at how helpful these conversations have become for me. Lots of reassurance and encouragement, of course, but also a big picture of how different we all are, and how varied our reactions can be, even as we also find so many similarities.
I can see I've been quite lucky in many ways, maybe most of all in terms of my oncologist doing the infusions in his office with constant supervision to check for any adverse reactions to meds, or drip rate, or whatever. I've mentioned before that I'm able to receive acupuncture and massage therapy in his office while hooked up to my IV pole: another amazing and hugely beneficial gift from his integrative approach. The bag of pre-meds he administers contains benadryl, decadron and kytril, I believe, and he adjusts according to my previous and current responses. I've also been hugely helped by my practice of drinking tons of water before during and after: yes, I pee non-stop but it's worth it to feel/smell/see those toxic by-products leaving my body.
I second the Glutamine recommendation from "onevoicecounts" and also want to cheer loudly for all of you/us who are remembering to stay empowered (sorry, an overused word, but appropriate here) in the face of doctors/nurses/institutions attempting to be in charge of our bodies and our well-being. I think we're learning (the hard way) that we are the ones who know best what it feels like to be in treatment, and the more we can speak up about it, the better for everyone. I love the idea that we can help and teach each other from our vast collective wisdom, so I thank each and all of you for the education, the compassion, and the generosity of spirit.
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Sukiann: I have to say you made me laugh. If you want to freak out...go for it. I believe what goes around comes around and that sap of a nurse could very well be walking in your shoes one day. As we all know a simple snap of a finger our lives took a new path.
On my last visit to the clinic I cried...not a whimper but a full cry like a baby cry. My Onc put me on a depression medicine. One of the side effects is bad taste. Been doing a lot of thinking about that medicine. Is it not normal to be mad or cry if we want? We have toxins injected into our bodies, we have SE's...the list goes on. Our reward is if we can go to the bathroom without having to take laxatives. We take handful's of medicines...we take medicines to sleep...we drink and drink so we can flush the chemo out....we get shots that causes us pain. Anyway you get the jest. Like been there done that. And one of the things that really chapps my tail is that pity look...and talk to me in a slow soft voice....what the heck I have breast cancer and I can hear and don't give me that pity look. Okay I feel better got that off of my chest. Seriously thinking of forgetting the depression medicine. If I cry once in a while so be it...don't dope me up and think its going to go away from another lousy pill.
My SE's this time for #3 have been weird. I had no bone pain, not complaining but can't figure why not. Lost the taste to food and beverages. Nose bleeds are trying to sneak back up. Very tired all of the time. Was sleeping good then a sudden change and was without sleep for two days and now the sleep is back on track (love those sleeping pills and double doses if needed). My eyes seem to have constant problems with focusing. I read the postings and feel very fortunate not to have many of the severe SE's that others are having.
Round 4 is the blessed last chemo is on June 3rd. I figure bring all the SE's on I am tough and can handle it all. I made a commitment to follow this to the end....at times its been one heck of a ride and not one I want to take anytime in the near future. I have had those moments where I would pray enough is enough and I just couldn't take anymore. I got past those moments.
The very best thing was my DH who found this site for me. Everyone has and continues to be so supportive, and understanding of each other. We are a large group of tough fighters. We may bitch, we may whine and we may cry but we also laugh and rejoice that we are in charge. Its our lives our bodies and together we continue to march on.
I hope everyone is doing well this holiday weekend. Many ((HUGS)) to EVERYONE!
Nadine
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Had 2nd treatment of Tax & Cy yesterday. Experiencing rash today. Does anyone know what I can take for the rash? Thanks
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elizrosner:
Good reminder about staying empowered. It's easy to feel helpless, and to feel that our oncs/nurses have all the answers, insights, and inspiration to heal us as we wish to be healed. It's easy to feel like a number sometimes instead of a person. Thanks for the re-direct, I needed it
Back in charge,
Nadine
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sherrilynne, get some Benadryl tablets and cream. I had a rash on my hands and face with every Tx. If you don't want to take more pills, try just using the cream. I never even knew they had cream but it worked pretty good.
Nadine54, glad to hear that you are feeling positive and ready for round 4. I'm with you on the pity look. My former boss (and still my friend) always looks at me like my puppy just died. My reg. Dr. gave me a depression test. And I am depressed. Wonder why? I have read that depression tends to set in AFTER tx are done. When we aren't concentrating so hard on our fight.
elizrosner, it is empowering to take charge. Sometimes it's really hard to do that when some of these drs. have such BIG heads. My PS doesn't even let me finish a question if he thinks it's in some way critical of him. My onc is kind of like that too. "oh, it's just..." is his favorite way to brush me off. But, I'm finding I can be a much more "assertive" person than I used to be.
Nadine 5time, It is hard to not feel like a number when the drs. don't seem to remember you from one apt. to the next. I know they see dozens of people, but at least they could look at a chart for a couple minutes and pretend to remember me. Not that it matters at this point. I'm down to quarterly visits with onc and every 6-8 weeks with PS for a while. I just need to remember that these people got me thru the medical part of BS (for which I'm very grateful) and they are not my friends and they do not have all the answers. And as far as insight and inspiration, that where everyone here comes in.
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I was wondering how long each infusion was with Taxotere and Cytoxin. How long did each one take.Thanks-Geri
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gmp, for me, the taxotere and cytoxin each took an hour to infuse. My pre-tx cocktail took about 15 min and then they also did a medication push. My whole thing including blood tests for white cell counts and the drug mixing never took more than 3 hours.
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Hitting a wall here, at the moment... feeling terribly achy in my arm, the one without all those lymph nodes, and petrified all over again about lymphedema...
So I'll share a little story instead of whining: I had a private session the other day with the woman who teaches Qigong at my local YMCA. Willow (that's her name) is giving me a Qigong prescription with movements especially suited to help with my symptoms. It may sound woo-woo, but she told me this: "The most powerful form of healing is the kind that we do ourselves."
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Hi all! I have my second round of T/C on the 26th and I need some bucking up. I am going into the dread stage again. It didn't help when the gal at the pharmacy told me it was only going to get worse. I had gone to pick up my anti nausea meds. I am dreading the diarrhea, the constipation, the face burn, terrible taste, soles of my feet cracking and so painful I had to limp, my tongue feeling as though it's scalded, whine, moan, gripe! Oh, and I forgot the lovely hemorrhoids and my scalp hurting. I had to shave it again today because the stubble kept catching on my pillow case feeling as though it was being ripped from my head. Did I mention the headaches and the dry blood clotted nose? Ahh! And the wonderful joint pain after the Neulasta shot! Gripe, groan, pi$$, moan! AND IT'S GOING TO GET WORSE!!!!!!!!! Help!
Nancy
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Nancy, some people find it easier as time goes on, can predict SE's and prepare for them or take meds for them. So, don't let her scare you. Some find it worse, some have a particular cycle that is worse, some find it easier. What she knows about from herself or others doesn't have to have anything to do with what your body will do. Understand the dread. I took more ativan leading up to treatments then I ever did during or after.
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Thank you, kmmd for your words of encouragement. I too am depending more on my ever faithful ativan. My nerves are getting worse by the day. I am going to have to reach in yet again to find that inner strength. Good luck to all of you!
Nancy
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Nancy, kmmd is right. Not everyone is the same and not every tx is the same. I did have some SEs that were pretty consistant with each tx. By Tx 3 I knew what to do to prevent or ease those SEs. I'm afraid that the fatique and nasty taste and bowel problems are typical. But as I said, by tx 3 I knew what foods and liquids tasted pretty good. I knew if I needed Imodium or laxative in my pill box and which days I would need them. The rest of the SEs I had were different with each Tx. My feet cracked and peeled with one tx. Yuk. But that never happened again. Keep your feet moisturized. Use the Eucerine cream. It kept my skin pretty decent. Use it on your head too. Your first Tx was an "Oh my God, what's happening to me?" kind of thing. With your second one, keep track of your TEs and when they occur. Don't be afraid to take any meds that will help you feel better. We were/are a walking pharmacy during chemo. Try Clariton for the joint pain from the Neulasta. It has made a difference for many. If that doesn't work for you, ask your onc to Rx Ibuprofin 800. That works so much better than over the counter Motrin or Tylenol. Not many have breezed thru chemo without some misery but don't let your pharmacist scare you. She should be more professional than that. How many rounds are you doing?? Oh, and come here to pi$$ and moan any time you need to.
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Hi Firni, thanks bunches for the advice. I will have to write Clariton down and will ask my onc to Rx ibuprofin 800, also get some Eucerine cream. I didn't think to put anything on my head! I will keep track of my se's this time. I was just too miserable to do it before. I am only doing 4 so I feel like a real whiner when some women are having to go through so much more. Thanks for letting me come and pi$$ and moan. You have been a great help!
Nancy
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Thank you Firni for this information. Rash is still there but I just took a Benedryl. I will get the creme also. I didn't have the SE the first time so wasn't expecting it. I do know that each time we can get a new SE. Thanks!
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Generic A& D Ointment from Walmart ($1.62/tube) has worked on Annabelle's head rash every time so far.
She's on Day #3 after T/C #2 (half done!!!), and the SE's seem to be a whole lot less than the first one. The generic "Claritin" from Target also seems to be keeping the Neulasta bone aches at bay, although we have another day or two before the full after effects of that bad boy show up.
FWIW, her Onc does not want her to use any aspirin, ibuprofen or other blood thinning products because of the lowered blood counts typically experienced from chemo. Tylenol/acetaminophen is acceptable, but totally ineffective for her.
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nancy, I'm going to PM you
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Hi TC Ladies: It pains me to read your posts.... I was right here, walking in those shoes January through April. I had 6 rounds of TC - each was differrent -- the 1st, 4th and 6th rounds were the easiest for me. The others had a variety of differing SEs - some SEs were consistent - mouth weirdness, no taste/appetite, GI upset, --- others were intermittment - rashes, fevers, fatigue, numbness in my extremities. If every one would have been the same, I would have known what to expect and prepare for - instead each new SE brought new anxiety. I do not believe the SEs were cumulative, as in, worse with each time. What is cumululative is the dread of feeling crummy and the desire for it to be over. I worked through my chemo - only missed two days around treatment time -- busy was/is good.
Stay strong ladies.... you will get through this. I'm heading into week 6 post chemo and feel pretty much back to my old self -- you will too.
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Hi kt57, your post was very encouraging. I had forgotten about my feet cramping. Wonder if that was an SE? You hit the nail on the head with, "the dread of feeling crummy and the desire for it to be over." Glad you are feeling better. The rest of us will get there.
DUTCHinAtlanta, hope your Annabelle (lovely name) is doing better as well. I'm glad you mentioned blood thinning meds. I take Plavix and I have anemia. I better bring that up when I see the onc Tuesday.
Wishing everyone a good night and remember those who have fallen but aren't forgotten tomorrow. Gramps was shot 5 times fighting in WWl and survived and dad was a veteran of WWll, Korea and Viet Nam. My heart goes out to the families of men and women who didn't get to come back.
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pantufas - Thanks for the well wishes. I would ask your Onc what he thinks about the Plavix.
We ended up in the ER last night. SE's this last tx had been quite mild. However, she developed a 101°F fever yesterday; and the Onc's weekend emergency nurse felt she needed to go to find out why.
Blood count was good, chest x-ray clear and bacteria cultures negative; so the fever is probably a reaction to the Neulasta.
HOWEVER, her blood pressure was 82/43 and they diagnosed her as severely dehydrated. (She does not want to drink the 8-10 glasses of water/juice/fluid per day, as recommended by her Onc.) The ER IV'd 2 liters of saline, which is a lot in a 120 lb body.
I sure hope this will get her drinking more fluids. Drinking is a whole lot nicer than IV.
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Dutchinatlanta: can you try different types of fluids and things with a lot of water content like popsicles, jello etc? I had a hard time getting the 8-10 in too, and looking back on it and after talking to a lot of other women, thinking it could only be juice or water and forcing myself to drink just that to get the fluids in was harder on myself then I needed to be.
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