Taxol and Herceptin only for stage 1 HER 2 positive?
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Yep, nausea is a SE of Herceptin.... There is a page on the SEs of Herceptin.
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Thanks, MaggieCat. I am a little bummed. Maybe my system will adjust over time. I didn't have this kind of issue with the Taxol, but I know they are two very different animals.
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tabby girl, weren't you getting Herceptin already with the taxol? If you feel worse on Herceptin alone it is probably due to the higher every 3 week dose you are getting now. You could ask your MO about getting the lower dose Herceptin every week. Same overall total dose, but maybe you would tolerate it better at the dose you are already used to. I have read about people doing that.
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Tabbygirl, I had some mild nausea this week also. I thought it might be associated with radiation, but it did occur for a couple of days after my Herceptin infusion. I didn't have much of a problem during the weekly doses so it came as a surprise now!
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Tabby, Maggie, Sandy, Nancy, ttfan and whomever I'm missing - yes! I was worse after herceptin than chemo. As PatinMN mentioned, I am going to have them slow it down. But still, I had nausea and constant headaches, not to mention this anxiety/panicky feeling. Now I have an awful cold. I managed avoid getting a cold the entire 12 weeks only to get knocked out by herceptin and a cold! Seriously, I feel so much worse after herceptin. No energy, no appetite, headaches - none of which were listed as side effects. Oh, and a nice pimple.
I'm having 4 weeks of radiation. I had my consult and go Tuesday for my tattooing and whatever else they need to do to prep me for radiation.
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TTfan, Maggie, Sandy, Nancy, Daniella - wow, thanks for the responses. I'm relieved I'm not alone, but sorry to hear you all aren't cruising through Herceptin, either. TTfan, I am getting the triple dose now - this last one was my third - and I don't recall whether I felt icky after the first two or not. I have always been prone to headaches with a little nausea attached, so if that happened after the first two, I wouldn't have connected that to the Herceptin. And this last time, I had gone to a wine tasting the day before the nausea hit, and even though I didn't drink much, I thought that might have been the cause - like maybe my liver is not back up to specs yet after the Taxol. So much to think about
I will just keep the anti-naus meds handy this time.In better news, my eyelashes are now about 3 mm long, and I actually had to do some eyebrow cleanup today. Also, my random old-lady chin whiskers are back in full force and I spend a happy tweezer session on them, too. NEVER thought I'd be happy to see THOSE, LOL.
My energy level is pretty close to normal again, and my head is fuzzing out nicely. Nice to feel I'm starting to look like myself again, although (and this is weird) I realize that a tiny portion of my brain is kind of expecting my breast to grow back, too. Argh. Meltdown in my future, I'm sure.
How about the rest of you all?
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Tabbygirl, I hope your nausea goes away. I'm glad I kept the anti-nausea meds they prescribed just in case I need them. I cracked up at your comment about the chin hairs! They were the first hair growth I noticed, too! I had a pretty good run keeping enough hair to cover my head until about week 9. Then I wore hats and started to wear my wig. In the three weeks after final Taxol, the rest of my hair, my eyelashes, and my eyebrows fell out. The doctors and nurses were amazed that I kept a reasonable amount of hair as long as I did. Now I have a fuzz head, teeny tiny eyelashes and eyebrows are starting to show through. I'm halfway through radiation now and am starting to be a bit more fatigued but nothing like the last three weeks of Taxol. I can actually work and not have to climb right into bed the minute I get home no matter what time of day it is! I do have the Herceptin drippy nose again which seems to last for at least a week after the triple dose. My legs, hips, and knees are still pretty achy, too. (But, that could just be age!) The neuropathy in my toes seems to be improving. It only affected three toes on my right foot so not too bad. I'm grateful to have gotten through the 12 weeks quite well despite a few blips. Good luck to anyone just reading and about to start this combination. You can do it!
Hugs to all,
Sandy
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Daniella, good luck as you start radiation. It is a royal pain to have to go every day but the weeks are going by pretty fast. Feels like I just started and I'm already halfway through. Hope the Herceptin SE's ease up for you. I've been feeling more anxious but didn't think is was related to the Herceptin until you mentioned it. I find myself starting to panic and feel anxious that the treatment I'm getting isn't going to be enough. Not sure if that is treatment related or part of the emotional whammy that this experience throws our way. We've already come a long way and we'll get through it all. On to a happier, healthier 2015 I pray.
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Thanks Sandy! I had simulation today - got all "tatted" up. I start next Tuesday. We have come a long way.
I go for herceptin tomorrow and I'm dreading it. I felt awful for almost 2 weeks after my last infusion -headaches, no appetite, nausea, dizzy, anxiety - just awful! I feel anxiety - like mini attacks where my chest feels tight and little racy- not dramatic but enough to be really uncomfortable. It happens once a day, maybe. Anyone else?
I did so well with chemo and now the drug that supposedly has no side effects is kicking my butt! Then I started to feel better and got a terrible cold. I ended up with an upper respiratory infection that landed me in the ER Christmas Eve. I was having chest pain from coughing and congestion. The oncology nurse didn't want to take a chance so I had to go to the ER. I guess this herceptin is much stronger than they let on sometimes.
Hope everyone is having relaxing holiday time.
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Daniella, good luck tomorrow. I hope the side effects you are experiencing will ease up over time. So sorry you had to spend Christmas Eve in the ER.
Today's adventure - my port turned upside down. Yup, it did. I'm told it is VERY unusual for this to happen. Saw the BS and she turned it over manually. I may have to go back to the OR to have it fixed if it happens again, and she said it probably will now that it did once. Never a dull moment.
Otherwise I'm feeling pretty well. Getting through rads with only minor skin changes and fatigue so far. I'll go for Herceptin and a visit with the NP next week.
Hope everyone had a good day. Despite the ups and downs, we are getting through this
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Daniella, I had a bad reaction to both taxotere and taxol so I am doing herceptin only. I am doing it weekly and they run it over an hour.
When they first ran it at 30 minutes, I developed a headache immediately, so they have slowed it down. Ask to slow it down.
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I had them run herceptin over an hour and also added an extra bag of saline to dilute. Definitely better than last time but still feel terrible. I started to really feel it today, one day after. Headaches, fatigue, queasy, no appetite, achy, dizzy...oh it never ends. It's not as bad as last time, though. I will say that is positive.
My doctor is still trying to talk me into tamoxifen. I just don't feel like it's the right decision for me with only 15% ER positive. The standards for ER positive keep changing and now there is that early study showing aromatose inhibitors prove more beneficial. I guess I'll keep researching and maybe see some more doctors. I know Sloan is super aggressive but I feel like the tamoxifen for all protocol is over inclusive. Then again, I'm not an oncologist. I wouldn't start until radiation anyway.
Ugh...can I just do NYE tomorrow morning? I don't want to stay up and pretend to be festive. We are staying home tonight but I do feel added pressure to be festive since it's only me and my hubby.
Happy New Year to all! I pray we all are SE and cancer free for the next year and forever!
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Happy New Year, Ladies!
I had my visit with my MO this past Monday. She asked me how was my energy level. Well, I told her, it certainly isn't what it used to be before the dx. Then I asked her if it was from the Herceptin. She said "no". It is still from the chemo. Even though I had my last chemo treatment on Aug 25th, it is still in my system. I had slacked off of the water and since I was sick with a sinus infection before the holidays, I didn't get on the treadmill. She told me to get back in gear on my treadmill - which I did yesterday. I also started to drink at least 8 glasses of water a day. I believe, as my neighbor who had bc 22 years ago told me, it takes at least 6 months after you stop chemo to get the energy back. Let's keep the faith. Drink and exercise to flush this out of our systems. We all will get back to ourselves one day at a time.
Danielle - Only my opinion - If tamoxifin cuts the risk of a recurrence even by 1%, I would do it!!!! I met a woman at Sloan in Manhattan who was offered 4 taxol treatments after her treatment ended. They told her it would give her an added 8% of "no recurrence". She did it. Even though it affected her nails and gave her neuropathy. Also, before I get my Herceptin treatment, I make sure I eat. I never get the drug on an empty stomach. I did feel tired the next day. Thank God I am retired. I took a 2 hour nap! Now what was my husbands excuse? - he too took a 2 hour nap! LOL To tell you the truth, I am a bear in the winter - I hibernate. Can't stand the cold. I am already looking into spending a few months in Florida next year. Feel better - as you move further and further away from chemo, things will get better.
(((Hugs)))
Marie
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Daniella, I had my MO appointment yesterday. Unfortunately he couldn't find the charts that he came up with when he and I had the discussion about tamoxifen last June. He did find another chart with similar info - basically that the effectiveness of tamoxifen decreases as the level of ER positivity decreases. He did also remind me that my ER staining was weak, which is a factor as well as the ER percentage (mine was 26%). Do you know your ER staining info? I can scan and email the chart to you if you send me a message with your email address. I wish you could talk to my MO - he's the best!
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Marie - I just got off the phone with MSK about herceptin side effects. My MO refuses to believe any of my side effects are from herceptin even though they occur after infusion and for about 2 weeks after. I never had headaches, blood pressure issues, anxiety or chest pain prior to herceptin. My MO tried to tell me that it's just anxiety related to not being treated every week - basically it's all in my head. I am getting very frustrated. I am not looking to stop infusions - but for her to take note and help me deal with it. Also, she should be contacting the FDA with these side effects. That's how side effects make the package insert! I too need to drink more water and exercise. I don't have a treadmill and can barely get coverage for the baby for radiation. Trying to find someone to watch her so I can go to the gym would be impossible.
PatinMN - my ER was weakly stained, too. I had the same diagnosis as you with even less ER%. The problem, and maybe this isn't a problem, but the research coming out everyday changes the protocol. MSK is very much about treating the cancer and not the patient. I just want my doctor to tell me how much more it benefits - give me a number. I am beyond frustrated. When I mentioned the results from the SOFT study about aramotase inhibitors, she goes "we can talk about that, too" - I wanted to scream. Why do I have to come up with my treatment options?! What is the best plan for me!! I might just fly out to MN and see your doctor. I am considering a second opinion at Dana Farber or MD Anderson just to see someone that isn't following the MSK hospital protocol to make sure. MSK is wonderful but I just need to be sure. I will PM you.
Anyone else having herceptin issues - headaches, water retention, anxiety or chest pressure feeling, kidney pain.
My eyelashes fell out last week - not all of them but a lot. I look like Minnie Mouse with three eyelashes on each eye. I think they are signs of growth, like a micro millimeter.
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Daniela, yes I am sooooooo sick since I got my Herceptin only infusion on Monday! The onc nurse said as she was disconnecting my port "This will be great now, no more feeling sick from the chemo". By the time I got home (1hr+) I was running into the bathroom with explosive D. I took a nap and awoke with horrible belly cramps and nausea. I took a Zofran and drank two bottles of gingerale to try and settle my stomach. I didn't have a headache as you reported, but very dizzy. Now 2 days later I am still slightly nauseous and dizzy, just crappy feeling.
My plan is to take a Zofran 1/2 hour before the infusion to see if that helps. Knowing we have the same MO I was following your previous post about asking for the infusion to be done over an hour with more saline. I will call MSK
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Just spoke to MSK and they told me it was "anticipatory nausea"! Go figure! Basically, that I expected to get sick so I did!
I told them they were wrong because I expected to be S/E free with the Herceptin only! They also told me to not take the Zofran before the next infusion because I would be wasteing my time. She said take the Zofran the minute I feel sick not before.
She also said they can give me a pre-med if needed. Don"t let on that you know me, cause they will think we are ganging up on them and then we won't get any relief! Just maybe ask if there isn't something they can give you in the IV to help you like when you were getting the Taxol.
Otherwise, she told me to continuously (every 8 hrs) take the Zofran and then the Ativan with the Zofran at night...
Nancy
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Daniella - my MO has a "thing" for someone at Dana Farber - he called him a God at one point. I can't remember his name, but I can try to find out for you if you would like to try Dana Farber for a second opinion. This Dana Farber guy was doing the weekly Taxol/Herceptin regimen for women like us, and because of that my MO decided to recommend it for me - I was his first patient for whom he recommended it, back in September of 2012. Of course now it's standard of care, after the study results.
If you want to come out here to frigid Minnesota I'd be happy to put you up!
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Daniella - Just my fyi.... When I was diagnosed I had the opportunity to get second opinion/ alternate treatment location. Your treatment center, MD Anderson and Dana-Farber were at the top of the list. I chose MD Anderson, with Dana-Farber as close second. Given your location, give serious thought to Dana-Farber. I am following the recommendation from MDA... a clinical trial sponsored by Dana-Farber... Maggie
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Nancy - wow. They had two patients call with side effects, side effects listed in the package insert as less common, and still they said it was in our head. I'm going to report my SEs directly to the FDA. That's how drugs are monitored. It doesn't mean anything but maybe our SEs will make it to the general SE portion off he warning (and our dr won't give us some condescending answer that it's in our head!) I love that they told us both its psychosymatic and to go take nj an Ativan. The .5 tic tacs that you can pop all day to no avail.
Maggie Cat - I think I will try to get another opinion from Dana Farber. There is actually an MD Anderson outpost in South Jersey. I'm not sure about how great it is considering it's so far from the main campus.
Pat - I pmed you my email. As always, I'm shadowing your treatment. Thank you so much for asking your dr. That was very thoughtful.
Well, off to bed because my baby wakes up early crying to get in bed with mamma...and she doesn't stop until she gets her way. So it's a 4:30 wake up call! She better thank Gid she's so cute!
Hope everyone is feeling well or better tonight.
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Hi Everyone: Today was my last Taxol-12 out of 12. -done!! Yay!
Man, I really hope I did the right thing by electing out of TCH. But with all the bad neurapathy and the nails lifting on this, I can't imagine how I would have survived TCH. I also get crippling diahhrea once per cycle.
I did have major drama today-my port wouldn't work and I had a 99.5 temperature. But I was ok on the white blood cell count and had they run the lines in my left arm. So now on to Herceptin only and radiation. The port had some sort of cleansing done and finally worked at the end.
For those who are Er+, when do you start taking Arimidex or Tamoxifen?
I am worried re SEs of Herceptin-felt super horrible after week one-weird numbness in my lower back and below, headaches and fatigue. Recall that you receive a whopping dose of Herceptin the first time. But they also gave me a flu shot the first week as well.
Everyone who is on this thread and beginning or midway through-hang in there-I promise you it will be over before you know it. You will find that people may stop emotionally supporting you but you will have many friends and much support on this list serve and from your infusion center. This board was a lifeline for me. I will stay on even after I finish Herceptin. And be sure to ask your MO as many questions as you wish.
Well, gearing up for asleep less night. Trying melatonin again!
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I got a call from my MO today. I sort of let her have it. I told her that I was very frustrated by her response to my SEs from herceptin, i.e., that they are all in my head and I should see a psychiatrist about anxiety resulting from not having chemo anymore. I told her that the side effects I described are clearly written on the package insert and it is her duty as the prescribing doctor to note those side effects, moreover, she should report them to the FDA. That's how package inserts get changed - by actual reporting. With that said, telling me that patients often feel anxiety when they stop chemo because they feel like they have stopped treatment (like I miss going there for chemo!) Well that it just ludicrous considering I am getting radiation daily and infusions every three weeks. Furthermore, I didn't describe psych issues, I said I was having chest pain with elevated blood pressure and severe headaches that tapered off two weeks or so after infusion. I told her she should listen m to her patients not only to treat me but to consider for her other patients with complaints. I explained that I didn't want to stop herceptin, but wanted her to note my side effects for the records. If my echo comes back with unfavorable results, then we can discuss stopping. She was very apologetic and offered premeds before the next infusion.
As for tamoxifen, I told her that I was frustrated with her just pushing it without giving me the actual benefits. I told her that next time we meet, I want her to give me statistical benefits for someone who is weakly ER+. I don't want to be lumped into a group unless it's the right group. I then sent her a link to a pubmed study regarding the benefits of tamoxifen for weakly er+ patients for her to review. LOL I'm sorry but these doctors make a lot of money. She can do the research to find what's best for me instead of following the MSK template without consideration.She probably hates me now. Did I mention that in my previous life I was an attorney representing pharmaceutical companies? I spent my career deposing doctors and researching medical studies to support legal theories. So I know I am one of her more annoying patients.
Sorry for any typos - the site is really slow. Thank you for allowing me to vent!
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Don't worry, DaniellaD-you did the absolute right thing! You must advocate for yourself. I drove my MO nuts-questioned everything-he wanted me to do TCH and I whipped out 2 articles on the Dana Farber study re Taxol and then he says "Well, we really should do an Oncotype test on your other tumor bc it looks sketchy and I think you will score intermediate range so I will stick with TCH." (Ok, so why didn't they run it 4 weeks earlier?? Hmm..) well, guess what-I scored an 11 on the Oncotype and he then changed his mind and said "Do Taxol." It's scary but you have to be careful. And I am also an attorney and know from experience that you have to triple check everything you are told. It is a blessing to be a strong person and to advocate for yourself-and TG for everyone on these boards-they have provided me with the tools to research so much of this as I was in big trouble with 2 different IDCs, believing I was doomed. You learn quickly that it is not 1970 and treatment options have expanded. Sorry for the rant but Ms. Daniella inspired me with her gumption!!
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You go girls!! 😉 it's good to know we have talented people out there pushing for us! I was a Federal Contracts Officer in my past life so I think that is why I am also so critical of the incompetence that I see at each appointment. Simple things like scheduling appointments appears to be a huge task! You can't run a business this way!
Every time I complain I'm told that maybe I should speak to the social worker about my fears! This past appointment I complained to my MO about my RO telling me I would have to have my lung hit, that they would "try" and miss my heart, and I would have 6-1/2 weeks of treatments! The RO also told me my pathology was so bad she couldn't even get me into a trial! I was blown away! I was told initially by the MO that if I did the T/H and radiation I would have a 95% chance of non-recurrence. When I related the RO's prognosis to my MO she told me that she would have Chris (the social worker) call me! I too lit into her and told her I have not met with Chris yet and do not intend to either! She then said, "OK, if you feel that way, I can discuss your case with the RO". Why shouldn't that have been her first comment!? The RO was wrong about my pathology report! Now the RO tells me I will not have my lung or heart hit and will be done in four weeks! So if I didn't speak up where would I be now!?
Nancy
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Nancy, April, Daniella and all you other spunky fighters - I love how you stand up and advocate for yourselves! I am an MD and am constantly embarrassed by the state of our American health care system. I run a large department in the inner city, I find the huge majority of our docs to be smart, kind and up to date. Those who were not don't work for me any more. But even with the best people our healthcare system is woefully underfunded and the systems are overly complex and oftenvery inefficient. Mistakes happen all the time despite everyone's efforts and every user of healthcare has to stay vigilant and ask questions. Frankly it almost terrified me more to have to be a patient in this massive beaurocracy than it did having the cancer itself. That said, I am also immensely grateful for the amazing advances in BC Dx and treatment that are more than likely saving my life.
I don't want to scare anyone more than they are already, but I do want to validate from within this healthcare system that yes, you must ask questions and no you can't just sit back and assume everything will be done right. Mostly it will and mostly your team has your very best interests at heart, but they all work in a fast paced, complex and high stress environment. They are human too, and humans get tired and make mistakes. And we patients are tired and stressed too, so we don't always hear and understand like we would when we are at our best. It all adds up to a setup for poor communication, which can lead to mistakes, large and small. I record all my important conversations with my medical team and listen again later. I am surprised at how much I misinterpret or just don't hear in real time. I love that the nurses triple check every infusion. Two nurses and me all confirm my identity and read the label on the chemo bag before it goes in. Sometimes our systems are great that way. And they are because of mistakes that we learned from. But while it is getting better, it is also getting more complex every day as knowledge and technology advance.
So keep advocating and questioning and researching. And also let your team know that you appreciate them (when you really do). Even doctors need the occasional hug or thank you!
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TTfan Thank you for leveling the discussion. As a doctor I think you have a better handle on the "fear" we are feeling. We have to research the medical issues and then question our doctors where you may already know the answers so you are less stressed that there are no "mistakes" being made. Speaking for all, we respect and are overwhelmingly thankful for our medical staff (nurses included) and try to show this at each meeting. I believe we are frustrated because we do hold the medical profession above many professions, just as we do FAA aircraft controllers. We know they are human but we expect "superhuman" people to not have a bad day at work and keep us safe in the air.
I guess what I'm trying to say to you is we are not disrespecting our doctors when we question some of their decisions. I am sad however that so many of the patients I've spoken to since being diagnosed do not question their physicians due to them feeling it is an sign of disrespect.
I'm sure our doctors are brilliant but with the extreme number of cancer patients they have to treat it is very easy for us to lose our identity in the masses
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Well said Nancy. We are by no means disrespecting our doctor even though we are frustrated at time. I realize that my doctor is subject to a huge bureacracy not to mention many many patients. I agree with Nancy that sometimes they lose us in the masses and sometimes patients fall outside of the parameters of the typical protocol. Those patients need to be evaluated individually. With that said, I am sure there are no patients with the exact same diagnosis, body chemistry, history, etc. so all require at least some individual attention . My venting was really about the frustration of certain doctors. It happens within every profession - not just doctors. That is why it is my duty as the patient to be on top of my treatment.
Nancy - I was told that with T/H the odds were something like 98.2% no chance of reoccurrence. I guess that's taking in to account that I would take tamoxifen for 5 years as that is what was in the initial study protocol. I just want to know how I am personally going to be benefited by tamoxifen - and why does that number of 98.3% drop so drastically if I don't take it? I thought I was getting the gold standard for treatment. This is what is confusing to me.
Thank you TTfan for your insight. I do try to see it from my doctor's perspective and take into account that I may be miscommunicating or she may be misinterpreting my description of symptoms. Thus it needs to be discussed over and over. I also am conscious of the fact that sometimes I am only speaking to a triage nurse who may miscommunicate the issues as well. That is why I had to take the opportunity to express my frustrations with the doctor once she personally called me. I am thankful she took the time to reach out.
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Hi Nancy - it sounds like the intent of my post may not have come across clearly. I was encouraging and supporting each of you to question your doctors and keep researching and to always have your own best interests at heart. I was trying to say that any doctor who does not want to hear your questions or dismisses or belittles them is not a doctor you should be dealing with. It is never disrespectful to question your treatment or question information you are being given, though unfortunately it is true that there are disrespectful ways of questioning other human beings whether they be patients or doctors.
I practice obstetrics , and knew extremely little about her two positive breast cancer when I was diagnosed. I was as in the dark as anyone else and if anything more terrified because I knew too well what mistakes can happen in the medical field. I was extremely angry that I had to figure out what treatment plan was best for me, and that my first oncologist was unwilling to honor my point of view.
My last comment about also appreciating our care teams, of course doctors and nurses and the many others who care for us, was only to say that we can and should question them, and that we can do it while also showing our appreciation and relating to each other on a human level. I certainly didn't mean to imply that anybody here does not do that.
Hope that was clearer! I would be very sad if anyone thought I was suggesting not questioning their care team!!
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It appears we are all trying to say the same thing! We all understand and appreciate the tremendous pressure we are all under as patients and as doctors treating this horrible disease! After reading my post back to you TTfan, I said to my husband I may have sounded too harsh and definitely did not mean to come off that way. Please accept my apology if that is how you read it. I think our senses are raw from all the prodding, sticking and poking. So easily put on the defensive.
I was in radiation yesterday and the woman across from me was extremely upset with her doctor. This woman has stage 3 brain cancer. They had done all the surgery they could and now she is on a chemo pill and radiation. When her husband asked the doctor if weed would help her the doctor got nasty and asked if she was a regular user. She replied that she was not but would be open for anything that could extend her life. The doctor said "things could be worse" and dismissed the question. I asked why she didn't ask again and she said "well, she's the doctor". I felt so bad for her.
Danielle I may have gotten the % wrong but she said that they only had four years of survival rates. Being as young as you are I would definitely find out what the best odds are with Tamoxifen. I am ER- and also PR-. I'm glad they will be giving you pre-meds with Herceptin, I am hoping for the same.
Have a wonderful weekend everyone! I'm set up for echocardiogram on Sunday, radiation Monday morning at Basking Ridge, NJ and hematology consult for my jugular bloodclot in NYC at 3 Monday afternoon! Oh what joy!
{{Hugs}}
Nancy
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