TRIPLE POSITIVE GROUP
Comments
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MMay,
Sounds like you're really struggling there; I'm sorry to hear that. Debiann gave you some excellent advice about requesting additional fluids. Don't beat yourself up about whether or not you can go to work. Carboplaitin and Taxotere can be a tough regimen for many breast cancer patients. I did Adriamycin and Cytoxin and had days where I felt shaky too. I was only able to work because I have a light teaching load (taught two classes that met on Tuesdays and Thursdays) and was able to work from home (aka laptop in bed) the rest of the week. By the way, you should start feeling better before your next dose as your body begins to recover from it. Hope you feel better soon!
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MMay, I strongly agree about the fluids! I went in for a liter on days #3 and #6 post-chemo day, and it helped. (Days 3-10 were the hardest for me too.)
I also suffered with awful nausea, and the oral meds weren't enough. I asked my MO to try IV Emend and/or Aloxi on my fluid days to see if that would help. Both drugs have a long halflife, and my insurance authorized the Emend for CINV on day 3. It didn't get me completely through the nausea, but it kept me from vomiting. There are many anti-emetics out there. If you aren't getting relief, don't be afraid to push for something different.
I also took a low dose of Ativan toward the end of chemo, and that helped with the nausea too. I wished I'd asked for it much sooner.
I set little reminders on my phone to show me when I hit the 1/3 point, when I had 30 days left until my last dose, etc. They went off throughout my entire chemo period. It's amazing how those little reminders boosted my spirits. They reminded me of how far I'd come and let me know that I was closer to the end.
It will end. I'm 7 weeks PFC. Every week gets easier now
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Thanks ladies. It is helpful to hear that I won't feel like this everyday for the next 3 months. I am drinking 96oz of water everyday and in the bathroom like crazy and wondered about flushing out necessary minerals along with the crud! So day 3 and then again around day 10 this could happen? ugh! I get herceptin every week (1st individual dose this Thursday) I hope that isn't going to throw me for a loop too! This is all so overwhelming.
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MMay, we are sending you
. Hang in there!! 0 -
TizzyLish, you hang in there too, and welcome also to the club nobody wants to join!
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MMay,
Sorry your not feeling well. I was so sick all the time I couldn't work. I had to take a medical leave. I to had many nausea meds that did not work . I to tried emend/Aloxie which did not work either. They finally gave me Kytril and Decatron. The fluids are a good idea.
Sherry
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I drink water with electrolytes added like Fugi or Smart water but even then I experience muscle cramps, so the sodium does get washed out with plain water. (Along with potassium, magnesium and calcium.)
The claritin is start the night before the Neulasta and continue for a week.
Constipation and indigestion are worse on days 1-5.
Bloody nose starts on day 10-19.
My LFT'S have been elevated but I will let the MO adjust doses based on those cause that is his job. CBC are actually better than when I was on the tamoxifen for 4 years prior to my second primary diagnosis. Time will tell what the AI's will do.
So far no nausea that hasn't been controlled with po zofran. The Aloxi IV premed does the trick.
The premed benadryl prior to the weekly Herceptin causes drowsiness and dry mouth and eyes. But they won't reduce the dose.
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Specialk Thank you for all wonderful advice and knowledge you share with us. It is so helpful
KateB79 The ladies here are a great help! I am so happy I found this site.
MMay Sorry you are having to go through all this! Please be sure to report to your MO so your SE can be handled
Rosesrx I started with leg cramps last night never thought I was flushing the good out with the bad with all the water I drink! will pick up some more alternatives today
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Hi, I haven't posted here for a long time but just looked in today and saw your group and decided to say hi as I also was triple positive and would like to wish everyone going through treatment all my best wishes and hope any side effects are few if any.
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mmay, almost all of us here had some kind of side effects due to the poisons they give us. It does kill the good and the bad cells. Try not to push yourself. I beat myself up the first 2 months and the MOTold me to go with what makes you most comfortable, relax, fluids, rest, and we are all behind you. Just ask and we will help as best we can. And if you question something, call Dr or nurse right away, there is no wrong question.
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Thanks everyone. I'm just so scared and wondered after this first round how I'm going to make it through. How am I going to keep nourished and feeling half way decent? Will I feel good again at all for the next 3 or 4 months or is this it? I see others up and around and I wonder how they do it when I can barely get off the couch. I thought I was tough and now I feel like a big baby. So overwhelming. I hope you can all be patient with me as I fall apart here.
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MMay,
You've come to the right place, everyone here can be very helpful. I've done chemo twice, 25 yrs apart, two different types of chemo. I finished chemo this time in mid April, 12 wks of Taxol/ herceptin and now I'm doing herceptin alone. every 3 wks for the rest of the year.
Herceptin is a monoclonal antibody ( not chemo) so since you're HER2+ as am I you'll likely be doing some form of chemo along with herceptin.
Chemo effects everyone differently ( even the same chemo) but there are a lot of generally common side effects. Your MO can advise you and many MOs now work with a nurse navigator who can help you with nutrition needs, help with SEs etc. and of course there is all of us who are here to listen, and help if you need us.
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Suladog I get my first lone herceptin this Thursday. I had one dose already last Thursday with my taxotere and carbo combo. Does the herceptin wreck much havoc?
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MMay - you won't feel this horrible all the way through, I promise. No matter how bad some days are, there are better days as well for almost everyone. As everyone has said, be sure to tell your MO and your chemo nurses what you are feeling so they can help. Don't be afraid to call if something isn't right and you are miserable - it's really not supposed to be that way, there are so many things that can help. Some of them are meds your medical team can prescribe and others are little tricks the women here have learned the hard way and can help with. Things like taking probiotics to help with diarrhea and asking for extra IV fluids. If all else fails and you just feel horrible on TCH (your current chemo regimen), you may want to talk with your MO about doing Taxol/Herceptin instead. At your tumor size and stage it is a reasonable and less toxic regimen with excellent success rates. Both Suladog and I are on that regimen and have done very well. And as she says, don't be worried about the Herceptin alone part, that is almost always much much easier and often SE free. And lastly, never apologize for feeling wimpy - everyone of us had wimpy days, and I had a lot of them in the very beginning. It was all so scary and overwhelming. We lovingly call them pity parties and you deserve to have as many as you need to! The day will come naturally when you don't need them any more, but you can't force it! Hugs your way!
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Mmay, herceptin alone should not be bad. While your there ask for some extra fluids. Usually the third week after chemo you bounce back and start to feel better, just in time for them to hit you with the next round. Good luck to you.
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MMay,
I haven't had any major issues with herceptin, I'm back at work again and my full energy is back. They should do an Echo or MUGA test to check heart function. My Drs do that before starting people on herceptin and then my MO has me get one every three or four months, so far my heart is fine.
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Thanks again to you ladies. You have been so helpful and alleviated some of my fears. I did have a echo before starting the herceptin and will be getting them regulary. I now have a lot of questions for my mo when I go in Thursday. Bless your hearts. ((Hugs)
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MMay, you will be fine. One day at a time. There will be good and bad days. Herceptin is definitely easier than chemo. Your MO's job is to get you through it. So please don't hesitate to contact them when you need to. Chemo is not fun, scary especially in the beginning but many of us here have already gotten through it and you will too. Remember, it is saving your life. Love, Jean
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MMay please don't beat yourself up we all fall apart. I cried so much Saturday I wore my self out. just couldn't stop. this is soooooo much and so overwhelming! I go today for Herceptin and I am nervous. my stomach is just starting to heal some and my mouth has less white spots but not totally healed yet. I hope there are little to no SE with Herceptin.
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Science has found lots of stress chemicals in tears. I like to think of crying as taking an inside shower to clean out the anxiety. I always feel better after a good cry. Love, Jean
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MMay, I'm right here with you--starting TCH soon, maybe as soon as two weeks from now. I'm dreading the SEs, but here's how I look at it: it will be over in December, everyone says Herceptin by itself isn't so bad, and we can always do just one more treatment. Just one more. So, if we're on the first and it's horrible? We can still do the second one. Same with the third, fourth, fifth, and sixth. We just keep going, knowing that it's hard and it sucks but it's dramatically--DRAMATICALLY--increasing our chances for DFS. You know?
I'm seeing a second oncologist today, just because she comes recommended from a colleague who just finished her BC treatments LAST WEEK. This MO at a big teaching hospital, which comes with pros and cons. . . . Honestly, I just want to get the ball rolling. Pump the potions in, manage the SEs, and back to my regularly scheduled programming in the winter. . . . Anyway, for now I'm weighing the teaching hospital doc against the private practice doc. I guess I'll know more after the appointment this afternoon. So many choices I never thought I'd have to make!
Thanks, as always, ladies.
-kate
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MMay I was in the gym doing 70 minutes of elliptical and treadmill the day after my first chemo. The SE will come on gradually and get a little more intense with each treatment. You most likely will not feel that way the entire 3 weeks. I found keeping as active as I could helped. But then again everyone is different.
1st treatment was boring. Actually all the treatments were boring. Big time suck. Bring something to do and eat.
BTW it will take some time to recover from chemo but you will. I feel great and I'm happy. My biggest fear was if I would ever feel good again. Well I do!
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Hello-
I am a very concerned husband ( maybe the only husband in this group). My wife was diagnosed with triple positive stage 1 breast cancer July 1st and a week ago she went through with her first chemo treatment ( 6 session every 3 weeks of Herceptin, Perjeta, Taxtitin and Carboplatin). Her reaction to these drugs were unbelievable! This was killing her to the point that she almost fainted from stomach pains in my arms. She is extremely tough, however her adverse reaction was such that really concerns us as she simply cannot sustain this 5 more times as this alone would kill her ( I have no doubt). The plan was this chemo followed by either 1) Masectomy, 2) lumpectomy 3) no surgery ( if the tumor disappears).
Make a long story short...her reaction to the chemo was so severe that she cannot withstand these treatments...so this is simply not an option. She is thinking of getting off the chemo and going with " Monotherapy" which would be the Herceptin only ( as she is HER2 +) followed by the Tamoxifen ( as this is estregoen and proestrogen sensitive). Then followed by whatever surgery ( lumpectomy or mastectomy) that is necessary......any thoughts? Has anyone ever done this?
She went through 1 round, and based on her reaction I am sure this did some severe damage to any cancel cells.....so it was certainly not in vain.
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husban1234
Your wife needs to let her oncologist know how the chemo/Herceptin/perjeta affected her and they can discuss changing dosage or changing taxotere to taxol or whatever is needed to help out so she doesn't have the side effects she had with the first chemo cycl
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Welcome, husban1234!
I second websister's call on this. Side effects are manageable, and the oncologist can likely do a lot to stop that from happening again. Call ASAP!
I'm starting the same regimen (TCH+P) on August 13, so please tell your wife that she's not alone.
For those of you following my saga . . . I picked an oncologist. She's wonderful; my partner and I both like her a lot. Where the first oncologist poo-pooed the idea of Perjeta, this one mentioned it before I did. She said the word "cure," which I like to hear. ("There is a possibility that this will cure you.")
-kate
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Kate,
good on the perjeta, everyone I know who's got anything 2cm or over is getting it with their herceptin, I hear it works great!
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Hello ladies, I have a question you all might be able to help with. I finished my chemo (AC then TPH), had my mastectomy in April, now on herceptin until December and I'm taking a Lupton shot every 3 months. I will not start armidex until after my reconstruction on 8/12/15. What wondering is my joints hurt sometimes and my knees are killing me is it the herceptin or the fact I have very little estrogen in my body from the shot? Any suggestions on how to help this I'm working and always on the move so I don't want to take pain killer, Advil and Aleve just don't seem to cut it.
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outdoors - hard to say, could be one or the other, or both. How quickly do you get your Herceptin only infusion? Some of us noticed bone/joint pain with a 30 minute Herceptin infusion which dissipated with a longer infusion. Did you have any bone pain during the taxane portion of your chemo
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Outdoors,
I get my herceptin over a 90 minute session. TTfan advised me to try it that way and I haven't had any painissues
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Kate -- I'm glad to hear you've picked your oncologist! I like the fact that mine seems to be up on all the latest research, too.
husban1234 -- I agree with the others that you need to contact your wife's oncologist about how poorly she feels. The medical oncologist (MO) would like your wife to complete treatment, so MO should do everything possible to alleviate the nasty side effects so your wife stays with the program. By the way, some women really struggle with the regimen your wife is on. MO may have to switch to something gentler like Taxol.
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