Taxotere, Carboplatin and Herceptin
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The zoladex shuts down the ovaries, yes? Does he want you to do zoladex plut an AI like femara or arimidex? I thought for premenopausal women the choices were tamoxifen or zoladex + an AI.
Omaz - onc did not say anything about an AI. I'm just wondering if I'd have more or less side effects from the zoladex, compared to the tamoxifen.
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christina - Interesting because I thought that other tissues can make estrogen and shutting down the ovaries wasn't enough.0
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Thanks ladies! Tamaxofun here I go.
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i was seeing my MO today before herceptin and while i was waiting for scheduleing for my next appt. i started talking to an older lady who was scheduling her port flush, and i asked her how long she'd had it because she looked so good ... lots of hair and everything. she said she'd had it for 20 years!! she was dx and treated in california 20 years ago. they gave her 90 days to live because her cancer was so aggressive. she took chemo every day for 16 weeks and today, she's 20 years out with NO recurrence. i got the biggest tears in my eyes when she was telling me the story. when she left, she said to me, 'you'll do just as well as i did, too. i know it.' oh, she said she asked to get the port removed after eight years and her surgeon said no ... it's been there too long. she said she's not even aware it's there and never has been. WOW! must have had an awesome surgeon who put it in. what a woman and what a walking picture of hope.0
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Wow, YaYa. Thanks for sharing. I truly need to hear positive stories like that. I'm so worried that the chemo is killing everything good in me and that I'll never be fully well again.0
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Fantastic story YaYa - thank you for sharing!!!
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Hi everyone! I made it through today with flying colors!!! I did my cold caps all day which went very well, and had NO allergic reactions whatsoever!!! I'm thrilled! I just did the Taxotere and Carboplatin today - doc infused very slowly with lots of fluids and premeds to try to prevent allergic reactions. I will have the Herceptin tomorrow with more premeds and slow adminstration for the same reason. If I continue to do well they may move it all faster and into one day like it is standardly done. For now, I am happy to go the slow and safe approach, given my allergic reaction history. Thrilled to be done with one day!
The worst part of the day was trying to make myself ice my toes and fingers to prevent nail issues and chew on ice to try to reduce mouth sores. I was soooooooooo cold! I just couldn't keep my fingers in the ice the entire time. I still think it's better than nothing! I was very, very happy I had brought lots of warm clothes and my electric blanket and heating pad!
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dancetrancer - one down! You go, girl!
I am so curious about the icing. I absolutely hate being cold and can't even comprehend sitting with ice. I will thank you in advance for going right before me and giving me an idea what I can expect.
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Hello Ladies! I got the news today that I am officially in remission! I start tomixifen tomorrow. Thank you all for your support through this! Sending out my love to you all!
Shannon
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yaya - nice story - I lovve it!
dance - excellent report from the first tx!
slgarcia - nice!
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Way to go DT! Getting past that threat of allergic reaction is a huge step. Tomorrow should be just like today, smooth sailing and clearing you to be able to do it all in one day next time. Glad the cold caps worked for you, will you be able to manage them on your own eventually? Hope you rest well tonight.
Great news Shannon!
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The 1st two cold caps were pretty cold, but after that - NO problem! I mean, the first two or 3 minutes were cold of each cap (you change them every half hour), but then it went away. I think keeping my core warm with the electric blanket was key. The ice on the nails, though...ouch-a-roo!!! No hair to buffer the cold there! So I just took breaks. Couldn't risk frostbite. My Tax time was I think about an hour so with 15 min before and after, that would be 1.5 hours of toes/fingers in ice. Way, way too long for me to tolerate (or be safe!).
One interesting thing...as you all know I had to premed with dexamethasone yesterday...this morning woke up to a pink L radiated breast again (prior to chemo)...the radiation recall happened just with the steroid!!! (Usually it happens with adriamyacin.) My doc had never heard of this. It doesn't hurt, just itches a bit more. Hopefully it doesn't get any worse as the actual chemo gets into my system and/or with additional treatments...even so, my RO said if it happens I just treat it like I did when I had radiation. Yippee! Why do all the strange things seem to happen to me? Oh well! This is why I'm trying the caps. My luck I would fall into the 5% who lose hair permanently with Tax.
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DT...so happy that you had an uneventful first treatment!!!! YAY!!!!
Gotta share what my hubby said...it's wrong but funny at the same time...I had posted on FB that I had my date for my exchange (which is May 31) and that I could finally see light at the end of the tunnel and it's not a train!!! His comment: "But it is headlights!!!" LOL...MEN!! No, seriously, we have that kind of relationship that we can joke around about things like that and I can also tell him when I need him to be serious and not joke around. He has been my rock through this!!!! It's funny because the other day, he said, "I love you, baby"...and he said it like he used to say it to me...I feel like his wife again and not like his patient. That is a good feeling!!!!
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DT...so happy that you had an uneventful first treatment!!!! YAY!!!!
Gotta share what my hubby said...it's wrong but funny at the same time...I had posted on FB that I had my date for my exchange (which is May 31) and that I could finally see light at the end of the tunnel and it's not a train!!! His comment: "But it is headlights!!!" LOL...MEN!! No, seriously, we have that kind of relationship that we can joke around about things like that and I can also tell him when I need him to be serious and not joke around. He has been my rock through this!!!! It's funny because the other day, he said, "I love you, baby"...and he said it like he used to say it to me...I feel like his wife again and not like his patient. That is a good feeling!!!!
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How awesome dougieswife - love hearing about your rock!!! Mine is the same way!
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Dougieswife------I think that is hilarious! We have had some pretty good jokes around our house too. It helps break up the sadness. I am glad you have him!
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slgarcia - Glad to hear you are doing good!! Is your arm all better now?0
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dancetrancer I had my port installed the day before chemo. The day after chemo I had these red circular things on my skin that I hadn't seen after the port installation or chemo. These marks were from where they removed those electrode things taped to my skin. Someone must of removed them too quickly and did a little damage to the skin. Not usually a problem but with all the chemo/drugs etc this time it was. I look like a martian landed on me. That was October 2010. I still have a few light scars but they continue to fade.0
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Wow lago, sounds like they really took a chunk of skin with those electrodes...YIKES!
OK all, had my Herceptin today, infused over 2 hours to be extra safe, with premeds dex and benadryl. No problems at all.
HOWEVER, I did have a rough night last night. I had strong abdominal pains but this was relieved once I was able to go to the bathroom successfully 2 times - YAY! Bordering on constipation, but so far, seem to be staving it off...I was up most of the night, however, Going on 3 hours of sleep, pieced together.
The most concerning symptom was my ears. At midnight, I woke up to go to the bathroom, and immediately felt and heard loud popping in my R ear several times. Then an hour or so later, I had developed tinnitus in my L ear. That has been going on all night and day and continues. It sometimes vascillates to the R side as well.
I talked to my onc about it this morning, and he wanted to make sure I wasn't taking any NSAIDS. Nope, NONE. Stopped baby aspirin last week b/c of going on chemo. I refused the Lasix they were going to do b/c I learned it worsened risk of damage to the ears. They were fine with that. Yet I still had a reaction with just one dose of chemo!
I told him I know Carboplatin is ototoxic (kills hair cells in ears which causes hearing loss and tinnitus and balance difficulties). He acknowledged that, but said we just need to monitor it and you have to realize you are putting a poison in your body and it will cause damage which you cannot always prevent. I'm not too satisfied with that answer. I don't want to lose my hearing. I've been researching as usual, but thought perhaps someone here has some history/knowledge about this. Please share if you do.
I am also wondering if any of my other supplements could be contributing to the problem...I'm on L-glutamine (10 mg 3x day), Acetyl L Cartenine (500 mg/day), B6 (50 mg/day). My other meds are prescription omepromezole, the occasional sleeping pill and Tylenol. Oh, and I'm also of course on Dex and Zofran. And I take a multivitamin and 4000mg Vit D daily per my onc. Any red flags anyone sees with those additional drugs? I feel like a walking pharmacy.
The tinnitus and/or hearing loss can be temporary or permanent. No one knows. This of course is REALLY scary. I don't want to lose my hearing and need to figure out what I can do to manage this. I want to be prepared at my visit with my onc next Tuesday.
Thanks all.
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dancetrancer, I hesitated to post, because this is suppose to be a rare side effect and I didn't want to discourage you. I developed tinnitus after my 3rd (which turned out to be my last) infusion of TC on 12/23/11. The first 2 1/2 weeks were unbearable, but after that it quieted down to a level I could manage. I still have it, but have learned how to cope with it. When it happened I got a lot of support from the amazing ladies on this thread. A couple of the ladies got tinnitus after every infusion, that only lasted only about a week each time (lets hope thats what you have). I'm still getting herceptin, had rads, and have now been on femara for about a week. My onco stopped my TC because of the tinnitus and many other problems I was having.
edited to add: I found out later that if I had had a lower dose it may not have happened.
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dance - I had ear issues after tx#1, but not on subsequent tx. I have very mild tinnitus now - but usually don't notice it, especially in ambient noise situations.
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Has anyone had a problem with arm pain during Herceptin treatment? I had my 3rd Herceptin treatment last Friday, and I was expecting it to be easy. On Saturday evening, I noticed that I had pain over my left shoulder blade. This is the same side as my port. They used my port for the first time. I thought I was going to jump out of the recliner it hurt so much. Now I know I need to use that lidocaine gel. Anyway, the pain on my shoulder blade was odd because it was very sensitive to a light touch but felt better with some pressure. Overnight, the pain traveled down my left side and over to my armpit right up to the edge of my left breast. The skin all along this path was very sensitive, and on occasion I would get an extra stabbing pain. I spoke with the oncology nurse on call and to my oncology nurse. They just said if it got worse to come in and someone would see me. I could make the pain go away with the oxy stuff I have or with Tylenol PM. It horrified me to think I might have shingles. Anyway, each morning, the pain is gone but it comes back as the day wears on. It seems a little better each day. Does anyone know what this is? The nurses either didn't know or didn't say.
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Alice, I am having Herceptin alone now, I finished chemo in November. I am having trouble with my arm and shoulder too, pain, a bit like a stiffneck which doesnt go away, but its the other arm to my port, its on the bc side. I had a lumpectomy with SN biopsy. The onco nurse checked it out today but doesnt think its LE. Having had Herceptin today I'm hoping it doesnt get worse again tonight. My arm will ache and I get sharp pain if I turn or stretch my arm. Weird isnt it. They will check mine out with scans, xrays etc if it doesnt go away.
I hope yours improves Alice.
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DT, I'm sorry to hear about the tinnitus. I am hoping it is a temporary symptom. And I am hoping you are able to get some rest tonight. Was the tinnitus keeping you awake or that and other things combined? If only you could put some cold plugs in your ears, maybe they would be protected. Just a crazy thought that came to me.
What is your schedule for remaining treatments?
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Hey Omaz. I am still on iv antibiotics for my arm until tomorrow, then I will switch to an oral one. It is healing, slowly but surely. Thanks for asking! Hugs to you!
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Hey Omaz. I am still on iv antibiotics for my arm until tomorrow, then I will switch to an oral one. It is healing, slowly but surely. Thanks for asking! Hugs to you!
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Sodium thiosulfate and hearing loss. Dancetrancer... Google it! Hope you are feeling better.
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Thanks Omaz, but my surgery was 9 months ago, isnt it too late for cording to occur? But stretching is a problem. Today the onco nurse suggested it was still all related to the surgery. I guess I'll be patient and see how it goes.0
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DanceT I don't think they really took off lots of skin. I just think having chemo made my skin more sensitive, became more irritated with chemo and didn't heal like I normal would have.
You can check with your onc but I too took Acetyl L Cartenine, Prilosuc (then Protonix then Nexium), multivitamin, D3, and a few other things. If you are already starting to slow down I would recommend Metamucil.Take as directed. I stopped taking it as soon as things moved at a normal speed. Don't wait till it gets bad. My worst constipation was chemo 1 because it took me a few days to figure out what would work. I gave birth 4 days later followed by hemorrhoids.
I have heard tinnitus can be a SE from chemo. Like GrandmaV says, if SE like tinnitus or neuropathy is too severe they should lower your dose.
Alice if it's shingles it would follow the path of the nerve. Mine didn't start that way but everyone is different. Sure hope it isn't shingles. They suck, I mean that was the only time I tried to take a narcotic. Never took any with any of the surgeries or chemo.
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