Taxotere, Carboplatin and Herceptin
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Lucky - my diagnosis is very similar to yours as well and I am on the same Herceptin schedule as you. Sometimes they do it in weekly lower doses to lessen SE's. Every patient is different and every onc is different and the tx schedules are tailored to each individual. I wouldn't worry about it!0
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luckyjnjmom Yes, the annoying twitch is from Tax. I didn't get it until halfway through chemo and then it kept getting worse (along with the Taxotears/runny eyes-yukkk). It will gradually fade away and one day you'll realize it's gone:) If I remember correctly it was approximately 2 months PFC before my eyes were totally normal again...Congrats on finishing TC!!!0
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Thanks! that's reassuring. You know how it is with this disease and especially the treatment - you can make yourself crazy worrying about whether or not your "normal". thanks for helping me.
Lucky
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Yes this is from Taxotere. Wait till the go out of sink… will drive you crazy but at week 5 PFC things start to improve. Also some people do get herceptin weekly but they are lower doses so they are getting the same amount of drug. It does reduce SE for those who have issues but is much more costly to do it that way.
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luckyjnjmom,
I don't know why I get it every week, but that is the plan they put me, on. I can't wait to be done in August and get this port removed. I am going to get a breast cancer ribbon with a Rhino head coming through it , when its out to symbolize all I have been through. It will be my first tattoo ever
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I love that!!
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Special K I am so thrilled for you! Congratulations! FYI for those of you with joint and muscle pain I Started pilates in mid Nov, 2-3 per week and my legs have totally stopped hurting and I am quickly getting muscle back. The mild LE is now reduced to just my fingers instead of entire right arm. trust mr it hurt like heck when I first started but it was much better than the gumby legs and hip pain. Here is to walking upright again:) hard to believe just 6 mos ago I could barely take 4 steps without pain, being winded and feeling like it was never going to end. Now if only I can get the H 15lbs to go away. 1 more TX to go!
I just had a MUGA though, I started at 72% and now at 58% does this seem dramatic? My onc is not concerned but I am seems like a big drop.0 -
nmoss - I went from 73% to 55% and they thought that was alright.0
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nmoss - thanks!
judy - try waterproof liner pencil on your eyes then rub some Aquaphor around the edges for the cracking and dryness, it worked for me.
all - I think the weekly H vs 3 week H is just style points - you end up with the same amount, just administered differently. They have both scenarios on www.herceptin.com, the drug website.
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What a great thread. I am going to be starting TCH in the next week or so. I thought I would be clever and ask them to give it to me Friday so I would be fine by Monday, but it sounds like people have "bad days" randomly. I hate to miss work, and also I take a class on Thursday nights and I would absolutely hate to miss class. So is there any benefit to scheduling chemo on Friday?
Another question - sounds like some people have eye/vision issues during chemo. I wear contacts...can I assume I can continue wearing contacts without any problems?
Thanks!
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Christina the eye watering (dryness)doesn't start right away but I would think about having glasses to wear. I don't wear contacts but I can see this being a real issue. Ask your onc about that. I had my chemo on Tuesday. I felt better by Sunday/Monday but then the taste issues kicked in. Everyone is different though.0
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christina, the only problem i see with getting chemo on friday is if you are getting a neulasta shot the next day. some places will administer on saturday, but my clinic is closed on saturday. if you are getting neulasta and they won't give it to you on saturday, then thursday is a good time. you could take friday off and have those three days to to recuperate.0
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I got my nuelasta at home. My husband shot me up.
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Christina I suggest chemo on Wednesday since your bad days are not right away and the steroids keep you moving. In my case and many others your crash days are day 3 and 4 so that was Saturday and Sunday and later on Friday. I never missed a day of work/ I got my nuelasta on Friday morning and chemo was the afternoon of Wednesday. As for eyes it started about treatment 4 and ended about 2 months after chemo. You must get glasses since contacts can get irritated quickly and there is no warning. Best of luck and for you all a healthy body.
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Christina,
I did big chemos on Thursday with the neulasta on Friday. My insurance wouldn't pay for the neulasta at home. The following 2 weeks I did Herceptin late friday afternoon so I didn't miss much work.
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I took tx on Tuesdays, gave myself Neulasta on Weds. The symptoms from the Neulasta generally started 24 hours later...so Thurs night and lasted (longer each time) until Sat night, Sun morning. Only #5 and #6 did the symptoms last a full week afterward.
But they never kept me from functioning. Lots of women never miss work....
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I have a question about eyelashes. Mine were growing but seemed to have stopped. Has anyone used Latisse?
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Just wanted to say thanks to all who read, responded, and allowed me to vent a couple of pages back. It was soooo therapeutic! As the country song says, "I just need to be mad for awhile!"
I agree with Lisa that one of the hardest things mentally about all of this is the identity changes. I wonder sometimes if I will know how to be "not sick," when that time (hopefully) comes, if that makes any sense. It must be very difficult to do this with small children. Mine are at least grown.
A couple of the suggestions here are well worth exploring. I am going to talk to the MO about possible dose reduction and/or extra fluids. I did ask about Scopolomine and was told they don't prescribe it because it "is generally ineffective." I feel more prepared to have this conversation as a result of the exchanges here. Thanks, ladies.
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anafoefanna, Several ladies on the cold cap thread used Latisse. They thought it worked very well.0
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Thank you Laura5.
Christina, I had chemo on Thursdays and was fine until the following Tuesday. I took off Mon-Wed every time, but Tuesday was always the bad day for me. I went to work on Friday after chemo on Thursday. I had Nuelasta on Friday.
I got some teary eyes, wore contacts all the way through but had to stop after I finished treatment because I lost my eyelashes. Never knew your eyelashes really protect your eyes. I have been wearing my glasses since, hence the question about Latisse.
Darlam, things really do get better and you will be back to feeling "normal." I think your perspective changes, but you are still you! Your strengh will return! In hindsight, chemo went quickly for me.
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does anyone have a hard time seeing there MO on days OTHER than treatment days? i can't seem to get in to see mine as the nurse keeps him super protected. she always poo-poo's my questions and acts like her answers are sufficient. well, they aren't and i want to see or at least talk to my MO over the phone. anyone?
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My onc is super busy. I go through my NP even when I was doing chemo. My NP definitely talks with my onc with my issues. If it were something serious then the onc probably would want to see me. Actually I don't even see my NP unless I have an appointment. It's all email… and I love that. No waiting for a phone call granted I could call too.
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Whenever I have needed my onc outside regular treatment visits, I started with his nurse, who I trust completely. If necessary, she would consult with the onc and call me back, or have me come in. I've never actually spoken to the doctor over the phone, but if I needed to be seen, they never hesitated. My onc visited me twice during a recent hospital stay and, while I'm sure these were billable visits, it made me feel like he took a personal interest in my situation.
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My onc is super busy as well (he runs his practice while also serving as Head of Oncology at our local hospital) but I always go to him directly with any/all issues whether I have an appointment or not and I always get in to see him. I might have to wait longer than usual to see him (unless its an emergency like when I had a fast moving cellulitis infection) but that is understandable and I bring reading materials to keep me busy. He also has me call him for test results and follow-ups if he doesn't call me first. We are Facebook friends but I don't have his email lol
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Yaya,
My nurses were the exact same way...so I always managed to stalk ... I mean "run into" my Onc when he came out in the hall!
After the first time he never tried to say hi and pass me in the hall. He knows if I see him, we're talking!
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Ana--I used Latisse throughout treatment, and Biotin. I got the impression from my MO that it would be kind of useless during treatment, but I did anyways. I don't think the latisse stopped my lashes from falling out, but once they grew back it was like a forest. I might be buying it forever!
My MO will visit with me when we pass in the hall, or anytime he sees me, even in the parking garage! It sounds like I am lucky to have him. But, the front desk people practically mug me for payments.
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If I had a question about dealing with a chemo symptom, the chemo nurses where usually the best and there was a number to call them.
My HMO (Kaiser) has an online message system for sending a message to one of your doctor's. It keeps the personal information in the messages on their systems where it should be secure, but it sends an email to let me know when a response is there so it isn't necessary to keep checking it. The doctors including my oncologist were quite good about responding promptly - normally within 24 hours. Sometimes the oncologist would call instead of messaging back - if they had questions or felt it would be easier. Once I left a message to find out about a test result on the day before a holiday weekend and didn't expect a response until after the weekend because the system said my onc was out of the office that day, but an oncologist covering for her called me that evening.
I like it much more than leaving a message with the nurse because the doctor always gets the message in my own words. It was also possible to make an appointment between chemo appointments but with the message system, I only needed to do that once.
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thank you, everyone, for your responses. the more i think about it, the more upset i get. my EF dropped more than 10% and yet the nurse won't let me visit with him about it. she told me that she knew what i was calling about (i'd left a message asking if i could get in to see the dr.), so she asked my onco and 'he said to tell you' that he would do another heart echo in two months rather than three, that he was aware of the problem, and that 50-55% was nothing to worry about. she also said the lump i feel around my scar is scar tissue, nothing else. really? are your sure? i know she's probably right, but we're dealing with cancer here, not the flu. i wanted him to take a look at my port, too, but she said they couldn't do anything about that. i'd have to see the dr. who put it in. ugh.
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Yaya - I know what you mean. I think they form a protective barrier around those MOs and keep them in a bubble. I remember when I called about getting an Rx for a sleeve for flying and the nurse said that he would say no and wouldn't even ASK him. I was furious. (Got my wonderful BS to say yes, though, without any problem.)
I have found that the chemo nurses usually do know a lot more and will take the time to listen, so that is a good resource.
When my EF dropped, he pooh pooh'd it completely. It dropped from 57 to 51 at the final MUGA (I was already done herceptin by that time). He swore I couldn't possibly notice the difference, even though I DID and was sure it would come back as a lower #, I could feel the difference during exercise. Again, he said nothing to worry about.I take CoQ10 daily and for the last six months have added a liquid L-Carnitine supplement, which is supposed to help rebuild heart function. I definitely can tell there has been an improvement. Now, I will not have any more MUGAS (since I am done with tx), but I don't care - I can tell my heart is much better, don't get winded or feel it racing during exercise the way I did back then. So those two things might be worth asking about and trying.
Re the port - mine was feeling kind of weird and i asked him about it once. He sent me to have it accessed to make sure it was working, and if not, they were going to do a port-a-gram, which is some sort of test where they inject stuff into it and take pictures to see how it is working. (how's that for a technical description?). Luckily the port worked fine so i didn't have to go further, but I definitely felt he wanted to sweep my file off his desk and move on.
Since then I have changed oncs, and I like her MUCH better. But I have never had to call with any problems or questions so I'm not sure if she will respond any better.
Hang in there.
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