Taxotere, Carboplatin and Herceptin
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Hello to everyone. I don;t come to this sight very often anymore. But I would like to say to the newcomers - YOU CAN DO THIS!!!!!! And to all the oldsters that still come on and give support, you guys are the best.
This thread got me thru TCH and BC in general - I could not have done without the help of the TCH crowd. I am continually thrilled that this thread still thrives! Thanks Cinrae!!!!!!
Lisa
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Glad to see you hear Lisa. How are the ribs? Is the Tamoxifen the cause of your brittle bones? I have never had a broken bone so I can't even imagine your pain. I hope the hot flashes are better by now. I still do come here but don't post much I just read to see how everyone is doing. I am still going in for blood work and Procrit shots. I will have waited a month to get a shot this next week and if I am still in the 10s I am not going to take another one. I have said that before but since I failed the trial I don't have to keep my blood count up for that. I am sick of the expense of it. I am having to pay some of the doc bills from the drug study so that was not even a bonus for me and all the misery I went through. No more trials for me. Some are doing good though. KristyAnn is almost finished with it but had to reduce a couple of doses but still hanging in there.
To everyone else good luck and like Lisa says this is doable. It is not real fun but well worth it.
Carolyn
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Hard Head = Sore Shoulder!
Ok, in my quest for all things "New Normal" I admit I've been happily neglectful of some of the things I should have been doing on a regular basis (*ahem* exercises 3 times a day) to ensure I would not end up BACK in Restorative Therapy for my arm on my mastectomy side.I hate those exercises! And so, I didn't do them. For months. And now, I'm back to having really limited range of motion, a SUPER-SORE Shoulder, and my neck isn't feeling so hot either!
So back to therapy, 2x a week I go. Therapy is a kind word for what actually occurs. Torture is more like it. Therapeutic Torture.
*sigh* There are days I wonder if I will ever be DONE with this? The answer makes me sad, a little mad, and then I try to think about something else.
On a happier note, I had a WONDERFUL Memorial Day Weekend! 3 cookouts in 3 days! Whirlwind eating fest! Love it!
I'm looking forward to a fun summer, culminated by my reconstructive surgery on August 25th! My new ta-ta's are on their way, and while the surgery is a BEAR (10-14 hours) and the recovery is a BEAST (4-6 weeks), I'm am SO ready! I have to think of something creative to do with my 4 pound brown prosthetic...LOL!!!
Anywhoo...pray for me beloveds (for discipline)! Continue to pray for my parents, they are both doing well, appreciably better than before, and for that I am grateful.
So the formula for pain relief is 2 liters of water daily, and arm exercises 3x a day; and for now, physical therapy 2x per week.
Question of the Week ~ How do YOU do things you really don't WANT to do, but SHOULD do?
In Love & Pain, Alaina
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Alaina~ I do it first thing in the morning when I am the least awake. I used to run and I would go first thing in the morning and I wouldn't really think about it just go thru the motions and by the time I woke up I was in the shower. I need to start doing this for getting thru my house work. BTW, I will see you on Saturday.
Amy~ Are you coming on Sat. ??
Honestly this thread is the ONLY way that I got thru 6 treatments of TCH. So newcomers I am really sorry that you are here but come here often and see if someone here can help. I honestly would just come here an whine when I was in the chemo hole.
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Alaina - I try to make a little deal with myself - if I do X (which I don't want to do) then I will do Y afterwards (something I enjoy).
Jamie - I will be there! See you then.
New ladies - this thread made ALL The difference when I did TCH. That's why I still come here - it is like home. Stick around, ask questions, share your ups/downs/inbetweens. WE UNDERSTAND!
(Have to say - got a REAL haircut today. My daughter's wedding is in 3 weeks! The hairdresser has been thru my whole chemo journey with me and she was SO SCARED to cut my hair off. I kept insisting and she finally did it. I LOVE how it looks. Ladies - your hair WILL grow back. I was bald last summer and now I am BACK, BABY! )
Stay strong!Amy
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Wow, AmyslStrong, I can't wait until I'm where you are getting a real haircut again. I'm so dreading the day when I have to shave mine off.
I had my first TCH today and it was a breeze although it took a long time. About 3 hours and 45 minutes and that was after waiting to get in for an hour. I found out the reason I'm not getting the herceptin every week. I'm enrolled in the Avastin study althought I got randomized out of getting it but I still have to go by their protocol and they do the herceptin all at the same time as the TC.
I have to say I'm very lucky with my oncologist and her staff. They're the best. She even gave me her cell phone number and said to call her in the middle of the night if I have something bad going on, especially fever. And the study nurse make up a notebook with all my reports and instructions organized with tabs and all and brought it to us while we were in the chemo room. I just love them all.
On top of all the calcuim and vitamin D they have me on they also told me to take B-6 and B-12 I guess to help with my energy level. I have to have a calendar to remember when to take what and last night I finally broke down and put my pills in one of those weekly organizers with a little box for what to take in the morning, noon and night. I keep forgetting whether I've taken my doses so I guess this will have to be the way I live from now on.
Also, about the nail problem. A friend of mine has been a nail tech forever and she said I will probably end up with problems and when I do that I should go to her and she'll help me deal with it. She's very experienced with helping people on chemo with that.
Best wishes and little side effects to everyone!
Terry
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Wow, AmyslStrong, I can't wait until I'm where you are getting a real haircut again. I'm so dreading the day when I have to shave mine off.
I had my first TCH today and it was a breeze although it took a long time. About 3 hours and 45 minutes and that was after waiting to get in for an hour. I found out the reason I'm not getting the herceptin every week. I'm enrolled in the Avastin study althought I got randomized out of getting it but I still have to go by their protocol and they do the herceptin all at the same time as the TC.
I have to say I'm very lucky with my oncologist and her staff. They're the best. She even gave me her cell phone number and said to call her in the middle of the night if I have something bad going on, especially fever. And the study nurse make up a notebook with all my reports and instructions organized with tabs and all and brought it to us while we were in the chemo room. I just love them all.
On top of all the calcuim and vitamin D they have me on they also told me to take B-6 and B-12 I guess to help with my energy level. I have to have a calendar to remember when to take what and last night I finally broke down and put my pills in one of those weekly organizers with a little box for what to take in the morning, noon and night. I keep forgetting whether I've taken my doses so I guess this will have to be the way I live from now on.
Also, about the nail problem. A friend of mine has been a nail tech forever and she said I will probably end up with problems and when I do that I should go to her and she'll help me deal with it. She's very experienced with helping people on chemo with that.
Best wishes and little side effects to everyone!
Terry
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Lots of good news today! Although I have lost most of my hair, what little sprouts I do have are still growing. I've had to shave my head twice as they get too long and poke through my scarves. My nails are still sore -- they are growing in almost white at the base. I noticed my toes are starting to feel a little pressure, but not near as bad as my fingers. One more to go! Then herceptin.
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Congrats on the haircut, Amy! And sounds like most everyone is holding up pretty well, considering. I'm much better today after a couple of dreadful days, intestinally speaking. No taste buds at all, but I still enjoyed having actual food for lunch today. Should get a little better every day from here on out, and then I'll be BETTER!
How long did it take those of you who are finished with chemo to get your taste buds back? It's kind of an issue for me, because I'm the editor of a big food guide in L.A. and a restaurant critic for a magazine.... and everything tastes like cardboard!
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Writer! Now we fully understand your tag
I am dying to know which LA food guide...I live in Woodland Hills and have seen many of them. Maybe you could be creative with your treatment and prepare before and after meal reviews...the audience might really like that! Something different (which Angelino's love) to mix it up, and bond with you in this journey In my list of chemo complaints, the loss/change in taste and fragrances was huge for me. My taste buds really starting coming back about 1 month after my final round of full chemo (12/10/99). By mid February, I was really beginning to taste food again and I am not exaggerating when, at least for me, it was almost orgasmic. I am on Facebook (who isn't, I guess) and never had I posted more photos of food, nothing how "great it is to be back!"... everything was better. Smells were better, too. There were products I had used and loved for years that I literally had to put away...all my Dove products smelled simply awful. Every once in a while now, when I smell one of the products now that used to repulse me during chemo, I swear I smell a tinge of the "other" fragrance. It must be psychosomatic...who knows. Continuing with Herceptin every week after TCH ended was truly a breeze in terms of SE. I have heard other women on the boards say that they notice their hair isn't growing fast enough, or that food tastes strange, etc...but this is not the case for me, nor for any of the four women I see every week. We all are getting our hair with the weekly treatments, and none of us notice anything. Perhaps we acclimate to it, I don't know? However, I had a much worse time with the Femara (I started menopause at 40 and haven't had a period in almost 7 years...so they put me on the Femara, rather than the Tamoxifen (as an ER/PR++, you may need to take one or the other depending on your menstural status). My Onc keeps telling me to wait a full three months before realizing the leveling out. Darned hot flashes, though! I swear it's worse than menopause ever was. Hang in there! You must be very close to finishing! Celebrate!
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Writer: The change in taste buds was a huge issue for me. I used to hear people with cancer saying they weren't hungery or they couldn't eat. Now I understand. When I found something that did taste good I glommed on to it. In the late stages of TCH I craved Kosher dill pickels and would eat a whole jar and even drink the juice. They tasted so damn good. Anything with a vinegar base also tasted good (salad dressings, vinegar & salt chips, German potoato salad etc). It's different for eveyone, but there's no harm in this kind of binging.
I was on the 3 week cycle and I found that some normalicy returned in the third week. A month out of TCH and on Herceptin only, my taste buds were fully recovered.
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Just had my final MUGA scan. I was the most relaxed during the blood draw/replacement than I have ever been. The tech was so impressed. Figures I'd get it right now that I'm done! But regardless I am so glad to have completed them! I had 5 - a baseline and then one each of the next 4 quarters.
SO GLAD IT'S OVER!
Amy0 -
So happy for everyone finishing up TCH, and done with chemo #5, so I'm right behind you! Feeling weak, weak, weak... but still really lucky- no nausea, no trouble with nails, hot flashes are much better since I've started gabapentin.
Is anyone else taking vitamins/supplements? There's so much mixed info it's confusing. My onc told me to avoid flaxseed and soy- two things several cancer nutrition guides recommended. I'm taking a daily multivitamin and that's it. Too bad there's no clear consensus.
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HI All,
I am 7 days post last treatment. The fog is lifting!!! YEAH,YEAH YEAH. I am getting excited each day out I am. I start my rads on Monday. Honestly, I am not that worried about this. So, that is a relief to actually not be worried about the unknown. Something I am not used to!
Writer- Hope you get your taste buds back. I can't imagine how difficult that must have been to do your job!
Lady Madonna-The only vitamins my onc said were okay were 1 multi and 2,000 of vit D. She said I could have some Soy as long as I didn't have too much of it. But, personally, I don't think I will be doing Soy. Great that your side effects have been mild. Honestly, mine really were not too bad, compared to what I have seen with others.
I have a question for you all. HER2+ I understand that heceptin is the necessary. Just curious if Tax, Carb & Herceptin are what are always given to us Her2+ gals. Or if they can add Herceptin to other chemo cocktails.
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Vmarie I had a bout of acute renal failure after my second treatment, and onc said no more carbo, so I am on 8 weekly taxol treatments with my herceptin instead. I don't know if they do any other chemos with it. I think they definitely want you to have one on the taxol or taxatere drugs with her2, other than that, not sure...
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vmarie, congratulations!!! Enjoy the return to pre-chemo life!
I was offered AC/TH chemo (adriamyacin,cyclophosphamide/taxotere,herceptin) as an alternative but chose TCH because the disease free and overall survival rates are statistically similar and the TCH doesn't have as much risk for heart problems. Also, the adriamyacin can cause a rare form of leukemia years later. So, short answer to your question- it seems they always use a taxol, but carb can be used or cyclophosphamide. Herceptin is also used alone, sometimes indefinitely, to keep late stage cancers from progressing.
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There is a link to a HER2 site and community and I popped over. The standard treatment is doxetaxol, carboplatin and herceptin. It used to be adriamyacin***, but it was linked to heart issues. So TCH seems to be the standard. And then the continuation of Herceptin. I'm counting the days to my last full TCH infusion - June 16! Yippee. My onc wants me to start Tamoxifen with the Herceptin. Anyone else do that?
My nails are still sore. THe marks on my left hand (the only sore one round #4) have faded, but the marks on the right from this round are more dramatic and on all fingers. Ugghh.
It is so wonderful to have all of you here to answer questions or just commisserate!
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Hi All,
Frosty1 - Congrats on your upcoming last TCH infusion.
Vmarie - Congrats on having completed your last one!
I just started my first one on Tuesday, still have a ways to go. So far the SE's have been minimal, no nausea yet, just achy and easily tired. Woke up with a burning throat last night, so used the magic mouthwash. I was able to eat a normal breakfast this morning, and throat feels almost normal.
Thanks to all of you for sharing your tips and information. The more I know about what might happen, the easier I find the process to be. Good luck and well wishes to all of you!
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sanaisa and swampy, thanks for the taste bud input. In previous rounds my taste buds would start to return about three days before the next chemo, but I've noticed a stronger effect after #6, surely for cumulative reasons. I'm 12 days out, and my mouth still feels like it's been blowtorched. Just hoping they're back, or at least partly back, by June 17, when we're headed to the Bay Area for a post-chemo celebratory eating trip.
sanaisa, the book I publish and edit is EAT: Los Angeles. We're the food-journalist-driven, local-focused, no-corporate-chains improvement on Zagat, with way more than just restaurants (cheese shops, taco stands, bakeries, etc.). And if you're an AAA member, you probably get Westways, and you'll see me in there every issue-- I've been its L.A. restaurant critic for years.
The taste-bud thing has been a big bummer, but the weight loss has been great, so at least there's a silver lining.
MelMel, hang in there! Sounds like you're doing great so far!!
And Amy, woot-woot on the final MUGA!
Colleen
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hi, I had my first tx of taxoter/carbo/herceptin yesterday. I woke up feeling a bit sick to my stomach and now i am feeling tired. When should i expect my hair loss to begin? I was on taxotere and something else that i forgot and her 2 yrs ago. My hair didnt fall out til after the 3rd tx.
Tonya
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Frosty-as soon as i am done with rads, 07/22, i will be starting tamoxifen while taking herceptin.
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nine-rugrats - I was also on TCH - hair was falling out fast by day 15 after first treatment. Had it all shaved off by day 18.
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I have been reading this site for about 3 weeks. This is my first time to Post. I started TCH on 5-21. I am on a 3 week treatment of TCH on week 1 and 2 then on week 3 get Herceptin only. I also take Femara daily Are any of you getting your treatment this way? I have tolerated the drugs real well so far. Only SE is a horrible metal taste and everything has no flavor.
Jolene
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Jolene-I started TCH on 4/9 but I get all three drugs at the same time once every three weeks. I'm with you on the metal taste and nothing having any flavor. It's like that for about 10 days after my treatment, then for the next 10 everything is pretty normal. You are lucky if that's the only SE you have! Best of luck!!!
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Tonya,you are from my area or near me in OK. I am sure sorry you are doing this again. So did you have met or recurrence? I think my hair started falling our by 2nd tx but then the 3rd got it for good. I just went to a local barber shop and had it buzzed like a boy would get a burr. I had a few bald spots but some of it never came out. I was really sick with my TCH and I think mostly it was the Carboplatin. where are you going for tx? You can send me a private message if you want to. I hope all goes well for you but you will want to take your nausea meds ahead of time for sure.Drink lots of water you have to flush your kidneys. I know you have been through this before but I have forgotten a lot of it myself.
I am happy for the rest of you who are finishing. hang in there you can do this.
Carolyn
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LadyMadonna, I'm on tons of vitamins. I was low on Vit D so I'm on that plus calcium with D and now B-6 and B-12, I guess for energy, and then I also take something called Hair, Skin & Nails that has biotin, gelatin and all kinds of stuff, for obvious reasons. Probably won't help but onc says it can't hurt. Actually, I think that's what put me in the emergency room a week ago. My stomach hurt so bad I couldn't stand up and they couldn't figure out what was causing it. I think it was in shock from all the pills I'm on after being a non pill taker all my life.
I'm on day 3 after my first TCH and my only s/e is that everything tastes salty. I can do this. But I know it could hit me worse in the days to come. Just crossing my fingers!
Have a good day everyone!
Terry
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I was so sick yesterday. And so tired. I spent the whole day in bed and all night. But this morning I woke up feeling pretty good. I am hoping that is the worst of it for this round.
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Lady Madonna~ I start on weekly treatments of Taxol and Herceptin tomorrow for 9 weeks. Then I will be on FAC every 3 weeks times 3....even my Nurse Navigator told me this was 'new' to her, and she is learning along with me. I haven't found anyone, yet, that is on this same course of chemo.
Gin 52 ~ I think your course of treatment is the closest to mine that I've found.
I've just been taking a multi-vitamin, Vitamin C 500mg twice daily, and B12....Trying to get in lots of protein but I've not been doing a very good job of getting all my protein in...I have to watch green, leafy vegetables because I'm on Coumadin and Lovenox for a blood clot (related to my port) so I'm really worried about nutrition.
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Tonya, I hope you are doing better by now. Have you thought about going to OU medical center? I know they are supposed to be the best. Did you get your meds?
I hope everyone is doing good today.
Carolyn
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Well I'm on day 5 after my first treatment and yesterday wasn't great, but not horrible. It was the first time I haven't felt like doing anything but I made myself go to the Look Good Feel Better seminar and I'm glad I did. It was worth it.
Today I'm a little better although I still have a stomach ache. Does anyone get an ear ache? It isn't bad, just nagging little ear ache on both sides. Water tastes horrible. The chicken salad sandwich at the seminar yesterday tasted better than anything I've had in days.
If I can get myself going I'm going to a store in Plano called Survivor Gals. Its run by breast cancer survivors for people going through this mess.
Everyone feel good today.
Terry
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