TRIPLE POSITIVE GROUP
Comments
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No..no flashbacks or panic attacks. In general I am doing great! I came through all of this very well, and have been happy in general and no issues. I'm almost all done with herceptin! It's just something about the mammogram itself that has rattled me rattled. I booked a spa pedicure later in the day on Monday :-)
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tresjoli, I understand. When I had to return to my primary care doctor's office for the first time, which was the site of the mammogram and ultrasound that swept me into whatever the last six months have been, I did just fine until I was in the car after the appointment. I lost it. But letting myself cry like that helped; I've since been back again (just for a routine appointment), and I did okay.
Sending good vibes and reassurance that yes, what you're describing is a thing.
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tresjoli, I know how you feel! I went in for my first mammogram and bang, my life turned upside down in no time at all!
I still have 3 chemo's to go, radiation and the year of Hercepton so another mammo is not in my immediate future yet, but I know I'll likely get some flutters reliving that experience again.
Positive vibes and thoughts being sent your way! Enjoy your spa time
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Trejoli - I'm 2 years out and actually looking forward to my mammogram scheduled for this coming Monday. I'm hoping the bb like things in my right breast are just calcifications and not anything serious. Good luck to you and me also. There is no reason to think that our cancer is not just history.
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I am supposed to start taxol and herceptin late next week I think. Still waiting to get the date. I have heard some talk about premeds. Can anyone tell me what those are? When I asked my Drs. nurse about them she said he doesn't give them. I am going to Emory in Atlanta, so you would think they know what they're doing? And what about vitamins like b6, b12 and E? I'm so scared about neuropathy!
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faith - the usual pre-meds for TCH (Taxotere, not Taxol) for me were Tylenol, Pepcid, Dexamethosone (steroid), and an anti-emetic Aloxi. I also had three anti-nausea meds to take at home if needed. I was given three different ones in case one or more was ineffective. For weekly Taxol the dose is smaller, and it is single agent chemo, so your oncologist may not feel that pre-meds are necessary, but they should be available to you should you find that you need them. Generally, Taxol does not produce much, if any, nausea - but if it does for you, you should receive something for that. Your onc may be trying this first weekly dose to see how things go and then adjust from there. There is a thread here for those doing Taxol and Herceptin - those members may have more info regarding whether they received pre-meds or not - have you looked at that thread? As far as neuropathy - I did take B6 and L-glutamine to ward off neuropathy, with the blessing of my onc. I did have neuropathy that resolved prior to the next infusion until half way through my six infusions, then it stayed, but did resolve by about 90-120 days post chemo.
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Faith - I had weekly taxol and herceptin. I did have pre-meds of Pepcid, a steroid and an anti-nausea drug. I never had any nausea at home and never took the two different anti-nausea meds they prescribed. After the 3rd or 4th infusion I started getting the tingling of neuropathy, and started taking B6 (100 mg per day) and l-glutamine (total of 30 grams per day, 15 grams of powder twice per day mixed in a liquid). I think it helped. Some people never have any neuropathy at all on weekly taxol. My chemo nurse suggested waiting to start the B6 and l-glutamine until I started having symptoms, so that's what I did.
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Faith, I did weekly Taxol with Herceptin/Perjeta (every three weeks). I took a steroid the night before and right before my infusion. They didn't give me anything else that I can remember. The neuropathy started about eight weeks in but was very mild (fingers/toes). It was completely gone a couple months after I finished. I never took any supplements.
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SpecialK, Thanks so much for your reply.. I haven't looked at that thread yet but it will be my next one to check out. And I'm so glad your neuropathy went away! I was between going to Moffitt cancer center and Emory but chose Emory because my nieces live there and I can stay with them. But I would have loved to have gone to Moffitt. I didn't see anywhere to put it but i'm BRCA2+ as well. How long did you take the B6 and L-glutamine?
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Weighing in on B6: my MO recommended it when I started TCHP (although taxotere [the drug I got] and taxol are different, they're both in the taxane family and can have similar SEs, including neuropathy). I took 100mg a day, in a time-release formula, all throughout chemo. Now I take 50mg a day, simply because I noticed some tingly toes when I stopped it completely.
My MO, who is on the conservative side when it comes to supplements, wouldn't let me take glutamine. I've since put my foot down about a few things (including turkey tail mushroom), and she seems to be coming around. Or she's just indulging me. Either way; I take what I want, but always make sure it doesn't interact badly with tamoxifen, which is an entirely different topic.
At any rate, TH is well-tolerated by most.
Have any of you heard/read that carboplatin is or will be removed from ASCO's guidelines for triple-pos?
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PatinMN and mommato3-
Thank you for the info. It is encouraging to hear because I have been so worried about the neuropathy. At least now I feel I have some guidance
So glad both of you don't have any lingering neuropathy!0 -
Kate,
My MO attended the ASCO conference last fall where they discussed the effect of carboplatin for triple+ BC. I had just developed some problems (minorhearing loss & tinnitus) as a result of carbo, so she was pretty quick to recommend stopping the carbo given the latest research. The rest of my chemo went much more smoothly after that. I didn't do too much research on my own about it, but I do think the latest research shows there is not too much benefit to using carboplatin (a very old drug with lots of potential negative SEs) with triple+ disease.
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faith - I took both the L-glutamine (30g of powder daily in three 10g servings dissolved in a cold non-acidic drink), and the B6 (same as kate) throughout chemo. I continued the L-glutamine until the container was empty, probably a month or so post-chemo, and I still take B6 but do it as part of a B-Complex supplement.
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I think the idea of a spa treatment after a mammogram is an excellent idea!
And I wish we knew about the carbo before we did TCHP! That one was awful for me!
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Tresjoli2- spa pedicure can cure all ailments in my book. Enjoy!
Blown away- thinking of you and your mammogram on the 4th...you got this!
Faith- I would be tempted to put in a call and talk to your Dr. About the premeds. I haven't heard of anyone not getting on the Taxol/Gerceptin regimine. I have all the same above in a 20 min. Drip prior to infusion and the steroid, I take by mouth...same time as the drip.
kateb79 and Duhramgirl- thank you for bringing up that topic. I hadn't heard of the removal of carbo in +++ BC. That's interesting. Off to google!0 -
Musosgirl, yeah . . . carbo kicked my ass. I mean, taxotere was no peach, but I credit the carbo for most of my SEs. So does my MO. But I, in her words, "tolerated it well," so I got all six bags at full dose. She was proud of me, I think. One can never really tell; she's one of those stoic types. At least she has a sense of humor!
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Faith - I was given several different meds during my TCH infusion the first time deca..., dexa..., aloxi and something else - I looked back through my old posts trying to find the names of all of them but couldn't find the post I was looking for. Sorry someone may hopefully jump in and give the full names.... Anyway, I was still so nauseated for 3 days that I didnt think I continue treatment. I think it was Special K who mentioned to me to see if I was getting "Emend" in my infusion. I asked about it the next time, it was added and I was never nauseated after that. Apparently, it is so expensive it is not automatically given. I can get seasick in the bathtub - could not have gone through further treatment without the Emend.
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Thanks Kate, Nolagirl, Blownaway, SpecialK for all the help and advice. It makes me feel better to have input from those of you who have been there. Like I don't feel so alone anymore.So thanks for that too! I'm curious about Kates' wild turkey tail mushroom LOL. I have got to look that one up!
Blownaway- will also be thinking about you on the 4th. Go out and have some fun this weekend!
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SpecialK said there was a thread here for people doing taxol and herceptin. I can't figure out how to find it. I see where you look for different forums but how do you find specific threads? Thanks!
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faith - I just type in keywords in the search box but you have to have an idea of what they would be. Here is a link to the Taxol thread:
https://community.breastcancer.org/forum/69/topics/788735?page=198#post_4681995
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Thank you SpecialK!
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No problem - it is a bit hard to navigate and find things unless you have seen them already, right? Happy to help!
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Faith-Ga- I'm on that thread too! Good info. It's the Taxol weekly thread. Not all ladies are Her2+, but there's a lot that are.
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I did weekly taxol with herceptin, and I didn't take anything the night before, but was given decadron, aloxi and one other thing. Never really had much nausea. Some just icky queasiness.
I also took l acetyl l-glutamine, b6.
I had a little tingling in my fingertips, but my biggest thing was my hands and feet were constantly freezing cold. So much so that my husband would put two heating pads at the foot of the bed and a hot water bottle for my hands. It took a long time for that to go away
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Hi, Faith:
I did weekly taxol and herceptin , the thread is
https://community.breastcancer.org/forum/80/topics...
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i just got the all clear! Mammo looks good. Woohoo!!!!!!!
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tres - yay!
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Great news Tres!
Faith - here is also great article on weekly Taxol+Herceptin for early stage BC. http://www.breastcancer.org/research-news/20140207-4
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Yay !! tres
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Happy to say that my bb lump turned out to be scar tissue from an old breast reduction surgery. I do intend to ask my onco tomorrow since HER2 can come back anywhere in our body, why do they only check breasts?
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