Taxol and Herceptin only for stage 1 HER 2 positive?
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April, your MO has to give the order on "no" benedryl. The nurses have to follow what they have in front of them. She was totally out of line if she talked down to you. You should call your MO and ask her if she can lower your benedryl. I had mine lowered from 50mgs to 25mgs which was much more tolerable. Your MO will advise you. They can't take a chance of you getting a bad reaction to your meds. Also, I would let her know about your experience with Nurse Rachet. If she has no control over it, you can request another nurse who has more compassion. Good luck to you.
Marie
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Maggiecat, has your surgeon called you to discuss the path report? You shouldn't have to be trying to figure this out from Dr. Google! Hopefully you have talked by now and have a better idea of what the report means. If not, call your surgeon! Waiting is so hard!
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Thanks Marie-the MO lowered Benadryl to 25-that is much better.
Maggiecat-Marie is right-the surgeon should be explaining that pathology to you. Sounds complicated to me. Hope you receive an explanation soon.
Ladies-my hair is falling rapidly post 3 week Taxol. Buzz cut the back and cut the top to a few inches. Losing hair down below too!!
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Thanks ladies! Surgeon distilled it down for me. Apparently common to find DCIS in the midst of the IDC. The multifocal comment may just be how the slices were made and whether the tumor was lumpy , ie a small piece jutting out into interstitial space or another very small cyst.
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Made it thru #7 of 12, finally feeling like I'm on the downhill side of things. Although, I feel the fatigue more this week, overall, I don't feel that bad, a bit spacey at times and I still battle with sour stomach at night. The body aches I had the first 3 weeks are gone, but I do have the hot flashes, feels like my internal temp is way off, hot-cold-hot.... I'm getting used to the shaved head, much better then the slow shed.. I am preferring hats to wigs, I don't really like my wigs, they feel hot so I cant wear them too long.
Welcome Maggiecat, wishing you the best on this journey we all would rather not be on!
How is everyone else doing?
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my turn, congratulations on being more than halfway through! For me the fatigue was more pronounced during the later weeks of TH. I'm two weeks PFC and am starting to feel more energy again. Not 100% there but improving.
Maggiecat, sorry you have to be here but welcome to this group. Lots of experience, strength, and hope here! I had a combination of DCIS and IDC, too. There have been quite a few others here who had the same.
April, glad the reduced Benadryl is working for you. I haven't had to shave legs or underarms, pluck eyebrows or stray facial hairs for months so there is an upside to some of this.
I've been wearing the wig for work but today is going to be a hat day. I go for my echocardiogram and bone density tests today. Keeping my fingers crossed that my heart is still happy on Herceptin. My bones weren't great to start with. I'm only 2% estrogen positive so I'm not sure if I will agree to take Aromasin and risk more bone problems. Have to have that conversation with the MO. Anyone else facing a similar situation?
Hope everyone is doing well today. Light snow is predicted for tomorrow morning and I'm not ready for that. At least it will be a good time to wear my cute warm hats!
Hugs, Sandy
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Sandy, I'm 26% ER positive. I started taking tamoxifen (my MO starts with that for 2 years even for post-menopausal women like me), and took it for 4 or 5 months. At one of my MO appointments I asked about the effectiveness of tamoxifen or AIs when the ER percentage is so low. He pulled up some research that compares recurrence rate by quartile of ER percentage. Turns out that tamox and AIs don't do much for people in the first quartile (which I basically am at 26%). I also had "weak staining" of the ER positive material from my tumor, whatever that means. My MO said I could continue tamox if I wanted, but his opinion is that herceptin was the important drug for me, and he thinks with my tiny tumor (5 mm), low ER and weak staining I didn't need to continue with tamox or an AI. So I stopped. My only concern is that they did find LCIS in the tumor, and tamoxifen supposedly reduces the extra recurrence rate from LCIS by half. But for now I'm not worrying bat that
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PatinMN I'm very curious by your doctor's research. I'm struggling bc my MO is trying to make me take tamoxifen. My tumor was only 15% estrogen receptive with weak staining. They are prescribing tamoxifen for 10 years! I just can't do it. Chemo pause was terrible and I suffered on even the lowest birth control pills. I do not do well with hormone drugs. I said I wasn't planning on taking it and my MO made it sound like its as then worst mistake ever. I'm going to get another opinion when the time comes
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Daniella - my oncologist has tons of research saved/linked on his computer, and can pull up answers to just about any question in a few moments. I don't know the source of the research he showed me (with helpful charts!) but I can ask him next time I see him (early January). Maybe ask your MO to show you research on the benefits (or not) of tamoxifen with such a low ER+, and if he can't come up with anything...second opinion sounds good. By the way, I really didn't have significant side effects from tamoxifen, but when I quit taking it my fingernails immediately went from thin, brittle, splitting and breaking back to normal. No hot flashes to speak of, just an occasional leg cramp.
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Sandy- my tumor was 15 percent er positive and my MO prescribed Arimedex. I did not even last a month on that medication, for me the side effects were horrible but I realize that all medications effect people differently. I have been taking Letrozole for almost a year now and am doing ok as far as side effects. I will be having a bone density next month to see how how my bones are holding up. Hugs to everyone.
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Patin, Daniella, jmac, thanks for sharing your thoughts and experiences regarding the hormonal treatments. I'll see the MO in a couple of weeks and we'll talk more about it then. Will also ask the RO when I see him on Monday. I am post-menopausal also and they have both only talked about Aromasin for me. Jmac, hope you continue to do well on the Letrozole.
Daniella, hope you are feeling better.
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Sandy - I am also post-menopausal, and I really gave a lot of thought to not taking the Letrozole after my experience with the Arimidex. In the end I decided to give it a try and see how it worked out. Good luck with your decision.
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PatinMN- that would be great if you could ask your doctor. I am trying to research myself now but have a little bit of chemo brain. I am definitely getting other opinions. It seems most publications say tamoxifen is beneficial but I haven't found any research discussing the level of estrogen receptive where it is beneficial - just generally ER+.
Number 11 down. Tired, tired, tired. I feel like my worse weeks were 7 and 8. Not so bad this week which is odd considering it's cumulative. Counting down the seconds until the last infusion. I know it's not a magic wand and it will be a few weeks before I feel like I am getting back to normal, but still cannot wait for it to end. Then on to radiation.
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I am 2 weeks and 1 day PFC and I am feeling almost normal. I can't believe it. A week ago Tuesday I was so fatigued and just plain wornout mentally and physically that I was in tears. And this week here I am feeling pretty much like myself. Only bald
I ran errands with my DIL today, then came home and got a wild hair and did some deep cleaning around the house. Around dinner time our neighbors called and suggested we hit a local cafe for some live music, so we did. More than I've done in the last three weeks put together - and I am OK. I guess I should wait and see if I am wiped out tomorrow, but MAN is this encouraging! I'd just about forgotten what "normal" is like. I have also begun Follicle Watch 2014. It is not going so well yet.
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Daniella, I've made a note to ask my MO about that research study at my January visit and will let you know.
Tabbygirl, congrats on finishing and feeling better!
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Hi All: Glad to hear that several of you are getting to the end! I just finished #4 on Thursday. Felt pretty good until Sat afternoon and now exhausted. I get one bout of the runs per cycle. My hair is almost gone. My nail beds are a bit sore. Worried about them stopping it re blood work next time. I want to get this over with since I still have rads to go. Must say I really hate wearing the wig but have no choice re work. Good luck to everyone
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thanks PatinMn! I really don't want to take it especially if there is no huge benefit. Im ready to be done with the hot flashes and other menopausal symptoms for awhile...like when I actually go through menopause. I can't wait to be able to sleep through the night again without waking every hour to throw the covers off because I'm burningup followed by freezing and ripping the covers off my husband to warm up. Awful!
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Hi All,
I just found this thread. I finished my Taxol 1 week ago and started my radiation this week. Also had my first Herceptin only infusion this week. Feeling OK but still very fatigued. When did others start feel like they were getting some energy back after finishing their Taxol? I'm hoping to have a few weeks of more normal energy before the fatigue from the radiation hits me. I'm also having some skin reactions on my arms and left eye area which look similar to eczema. MO is thinking they may be a type of reaction to the Herceptin. I have had previous reactions to similar drugs I have taken for other issues. Anyone else having these symptoms?
I'm really looking forward to finishing up my radiation treatments before the new year. Then I just have to look forward to reconstruction surgery and herceptin and whatever aromatase inhibitor they decide to prescribe for me. Oh and the big one--hair regrowth!! 2015 is definately looking better than 2014!
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Any ATEMPT clinical trial gals here??? I started a new topic under HER2/neu to see if we can link up!
Maggie
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Wednesday was my final taxol/herceptin treatment! I got a triple dose of herceptin so I won't have to go back for a few weeks. I'm so happy to be done with chemo. So far my SEs are the same except my skin broke out again like it did the first round which leads me to believe it's the herceptin. Lord I hope I don't have to break out every three weeks now. I'm tired, bloody noses, lightheaded and no real appetite. It's usually by Friday night that I feel the worst but so far, so good. Looking forward to getting energy back
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Hi Daniella,
Congratulations on completing the taxol part of this journey! My skin cleared up not long after chemo ended. Taxol stays active in your system for about 1 month after the last treatment and "inactive" for about 6 months. So continue to drink plenty of water to flush it out. My last taxol treatment was Aug 25th and Herceptin only has been a "no big deal". It's a triple dose in 1/2 hour and no pre-meds. It does get better. I had slight fatigue with radiation. Really not much to talk about. Although I had 16 treatments, they were accelerated. So the dose is the same. You could be feeling lightheaded and fatigue because you are not eating right. My MO said for me to have a slice of wheat toast w/peanut butter and sliced apple for breakfast. It is delish in the morning and it covers every nutrient! Good luck to you as you move along to the finish line!
Hugs & Happy Thanksgiving!
Marie
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MarieNJ... how are you these days? I went back through this thread and found your history... numbing on the scalp and lips ( I think... then maybe more)... I have mentioned my concern about Taxol to the two oncologists I've met with in the last 10 days. They really down play it as a temporary situation in a small percentage. Maggie
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Marie
I'm actually feeling better after my final treatment than I did during weeks 7-9. My mo mentioned that maybe my body was adjusting to the chemo so my SEs that were bothering me dissipated. Sort of scares me because I can't help but think maybe I didn't get enough chemo if my body started adjusting. I'm eating better but I still get dizzy when I do too much. I'm hoping for a quick rebound. Trying not to think about radiation.
How is your neuropathy? Happy Thanksgiving! Hope everyone gets to enjoy the holiday.
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Very anxious I restart herceptin early December and have been off all treatments for the last 4 weeks that included Taxol after 5 treatments . Taxol made me very sick and brought all my numbers down and my blood pressure was like a yoyo. I got pneumonia so I was in and out of hospital for 3 weeks and I have no energy and afraid I will have side effects with the Herceptin since I really don't know what caused many of the side effects I had before. On top of the side effects my MO is only in NYC once a week now so its becoming a scheduling nightmare .Has anyone switched Doctors in the middle of treatment?
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Maggie - I am doing very well, thank you. I am 3 mos past taxol, but still have the neuropathy from taxol. I do feel a slight improvement. It's probably going to take time. It's amazing, some se's go away immediately and others just take time. On a good note, there is no pain associated with this neuropathy - I'm knocking on wood! LOL
I had a "speed bump" along the way. I go to my endocrinologist 2 times a year because I have hypo-thyroid and she keeps an eye on a nodule I have on my thyroid. She sends me for an ultrasound once a year. This year, she said I had a lymph node in my neck that got slightly larger than last year. She said not to loose sleep over it because its probably nothing, but to be cautious, she wanted me to get a biopsy. (ugh) My husband suggested I call my MO and let her know what was going on. I'm happy I did. My MO wanted me to have the ultrasound redone at MSK which I did last week and there was no reason for a biopysy. The radiologist said it was very normal. YAY!
Daniella - My friend who had bc 12 years ago told me before I started treatment that she wondered if the chemo was working because she was feeling so good. It works. Remember, the taxol is a low dose because your main drug is Herceptin. I was told that the chemo is given as a boost to the Herceptin. I believe they are doing trials whereas the chemo may be eliminated from the treatment. It is not the protocol as of yet. I am glad you are feeling better. I finished radiation. It was no big deal. The only big deal was going to NY everyday - Monday thru Friday. I had radiation lying on my stomach with my breast going into this hole. It takes a few minutes, You shouldn't have radiation until you are at least 1 month away from chemo. You may have to remind them. They were ready to schedule me soon after the simulation, but I told them the RO said 1 month away from chemo. They called her and she said I was right! Just make sure you put the cream on as they tell you to do.
Sweetbanker - are you at MSK? I doubt if the Herceptin was the culprit. Switching MO's is a good question. I would tell them that you are concerned about this since you had a fragile situation and ask if you should you have an MO who has more availability. Let them know this is very concerning to you. Good luck and let us know how you make out.
Have a Blessed and Happy Thanksgiving!
Marie
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MarieNJ - yes I'm at MSK in Manhattan Thank you for all your comments and thoughts so happy for you that most of your treatments are behind you. They called me to start radiation therapy since it's been a month since Taxol I had to explain I can barely walk from the front of the house to the back with out getting short of breath but each day I get a little stronger.The pneumonia and taxol knocked me out. I told them I will call this week and come in next week when I see my MO and restart the Herceptin. Just want to have the strength to drive myself for the radiation I come from Brooklyn and like you I will have my breast in the hole my tumor was in the front. I saw my RO before my surgery to give them an idea if I would qualify for radiation since I had radiation 30 years ago same area for Hodgekins Lymphoma. MO feels alot of the se I'm having is due to a compromised system from those treatments but no way knowing for sure.Thanks and Happy Thanksgiving
Kathi
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Kathi -
You WILL get stronger every day! Good luck with starting the Herceptin. I was at MSK yesterday for my Herceptin. Herceptin is nothing like taxol. Number 1, it's over in 1/2 hour and I hear from all the chemo nurses - no side effects. Thank God, I haven't had any. Of course, I'm knocking on wood!!!! LOL Next week I get my echo cardiogram. You will have one every 3 months. Did you ever go to MSK's location on 60th Street & Madison Avenue? It's a beautiful shopping area. The only thing you need is - mega-bucks! LOL Each time we go into Manhattan, I tell my husband we have to go down to 43rd St and get tickets for "Beautiful" the Carole King story. It's so congested, we end up changing our mind.
Want to hear a funny story: One nurse told me there was a patient who said she comes from so far away. The nurse asked her, where do you come from? She said, Brooklyn. The nurse said, Brooklyn! Germany is far!!!! I thought that was so funny.
Have a wonderful and Blessed Thanksgiving!
Marie
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Kathi, thinking of you and wishing you better days. I hope you'll do well on Herceptin. Let us know how you're doing. I'm on the every three week schedule now and finding it pretty easy.
Daniella, glad the last weeks were easier on you. It's about time you got a break!
Marie, your Brooklyn story made me laugh. I used to live in New York and totally get that! My former in laws used to say they had a mixed marriage - he was from the Bronx and she was from Brooklyn!
I got my echo results back this week and all is well so I'm good to continue Herceptin. I'm grateful to have completed chemo with relatively few problems and will be starting radiation next week. I managed to keep most of my hair for most of the 12 weeks of Taxol but now it is pretty much gone. I'll trim the last few straggly hairs off and wait for the new baby bird fuzz to come.
I'm grateful to have a really nice wig that everyone says looks great on me. There is so much to be grateful for that Thanksgiving will be very meaningful this year. My daughters, son-in-law and parents will be here and my kids are doing most of the cooking. Yay!I'm grateful for all of you and everything you have shared here. For anyone new or just reading this thread, know that lots of us have gotten through this treatment very well and you can, too.
Happy Thanksgiving!
Hugs, Sandy
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Happy Thanksgiving everyone! I have been mostly lurking and learning while waiting to hear what treatment I would be getting. Found out yesterday definitely T/H. Treatment #1 Dec 2. I'm nervous but all your info and stories make me feel so much better prepared than I would have been! I have chemo class Monday AM and "Look good feel,better "Mon PM. Between all your valuable shared experience and both classes, how much better prepared can I be for chemo Tuesday? I chose to schedule the port placement for after the first two sessions to see how it goes without it and then decide. I am quite thin in that area and those are the people who seem most unhappy and uncomfortable with their ports. I'm wide open to any opinions!
Off to eat turkey- got not one, but two invitations from friends and family who figured cooking was not at the top of my priority list this year. So I am exceedingly thankful and will be very well fed and entertained!
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thanks for this post I am a newbie with a similar dx. How is your treatment going, what are some side effects you are experiencing.
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