TRIPLE POSITIVE GROUP
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i have been on tamoxifen and Lupron for ten months. My feet hurt, especially when I first wake up. But that's it. And I
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Thanks for all the Tamoxifen responses - I really appreciate hearing your experiences! Sounds like it is worth a try, with the hope I'm in that group with minimal to no SE.
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I am hoping some of you can help me out.
I am a teacher involved in a summer workshop. We are learning how to prepare students for a science fair. As part of our requirements, I need to conduct my own research project. I chose to do a survey about how a breast cancer diagnosis impacts our thoughts about death and dying.
I am hoping that YOU will help me. The information I receive will be anonymous and it will only be viewed by other teachers in the workshop.
Participants need to be female, stage 1-3 at diagnosis, and have no evidence of recurrence.
Thank you so much to any of you who chose to help me.
Here is the link to the survey. It should only take a few minutes to complete. The deadline for participating is Monday, August 8, 2016.
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Hey we told you so.....
Anastrozole and carpal tunnel syndrome....
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im Going to wave this at my oncologist, who keeps telling me some of my issues might be due to menopause and not necessarily arimidex
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Since we are talking about Arimidex/Tamoxifen, my five years on Arimidex ends September and October I'm due to switch to Tamoxifen for another five years. A bit nervous doing the switch because I have minimal problems from Arimidex.
Anyone else doing the switch?
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Hi all:
I've posted this question on another thread, so sorry for doubling up.
Has anybody done adjuvant TCHP 12x using Taxol instead of Taxotere? I'm currently doing Taxol/Herceptin and have finished 2/12 weekly treatments. I got a second path opinion that shows the tumor size as larger than the original path stated. The tumor was 2.4 cm instead of 1.4cm so this moves me from Stage 1B to 11A. I have a very tiny spot (4mm) of secondary cancer and micromets in 1 of 4 lymph nodes but am told the micromets don't count as lymph node involvement. Given the new path report my oncs what to do TCH or TCHP - they are not in agreement and I'm confused and uncertain. To top it off, I am very sensitive to drugs and having a hard time just with Taxol/H weekly. I can't take anti-nausea meds due to potential aggravation of a suspected neuro condition so I am scared about what I hear is terrible nausea associated with Carboplatin.
Any advice or insight would be greatly appreciated. I'm worried about the risk/benefit of adding the C and P as well as the use of P adjuvantly. Are many people doing that? What I am learning (slowly because I apparently am not so bright lately...) is that we are expected to make our own treatment decisions in the midst of all the chaos.
Thank you for being here.
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Hi Willa - sorry you have found yourself here, but everyone is extremely helpful. This is a tremendously stressful time, but you'll get through this.
From what I understand, primarily from the boards here, Taxol is better tolerated than Taxotere. There have been many good results with the Taxol + Herceptin combo:
http://www.breastcancer.org/research-news/20140207...
Perjeta is usually give neoadjuvantly, however there are instances where Perjeta is also offered, which complements the performance of Herceptin. It is a very good thing if you can get this drug, usually you need node involvement, but you might want to check the TCHP threads, this one is a good one:
https://community.breastcancer.org/forum/80/topics...
I can't speak about Carboplatin because my MO recommended a different regiment for me, although it incurred more SEs / risks the advanced nature of my situation warranted it, IMO.
I tend to get allergic to things, not dangerously so, but enough. With Perjeta I got a rash that was treated simply. I needed IV Benadryl and Pepcid every time I got Taxol. I also had some neuropathy. But I am on Herceptin-only now with very few side effects.
I hope this helps!
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On the news last night, there was a very short news story re hormonal therapy following breast cancer causing hot flashes and weight gain - DUH...... However, also mentioned breathing problems. I have complained to my oncologost, to my PCP and to my cardiologist who put me through many expensive tests last year. At no time did anyone suggest that my shortness of breath could be caused by tamoxifen. I just saw my onco and she is giving me a 3 month rest from tamoxifen. She said it should be out of my system in 2 weeks but my breathing has slightly improved already. I also have joint stiffness and pain (my wrist literally locked up one night and I could not move it - next morning it was fine other than the usual.
In 3 months, she will test my hormone levels and do a bone scan to see if I can take one of the AI drugs (have had osteoporosis in the past, hence the tamoxifen).
I guess what I'm leading up to is that the doctors want us to stay on these meds and tend to downplay the side effects. Has anyone had better health by making this switch?
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I have triple postive breast cancer and currently undergoing TCPH treatment. I just had treatment 3 out of 6 and am still so sick after treatments. What I wondering is, has anyone had there oncologist change their treatment plan midway through? I have a mri next week and I have a feeling they will see that the tumor is gone. I can't feel it anymore. My sister had breast cancer last year and spoke to her oncologist today about my situation and he was very surprised that they hadn't switched my treatment up.
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colleen, my Taxotere was switched to Taxol half-way through and then, due to an allergic reaction, Abraxane. Also my Carbo was cut in half for one treatment half-way through, partiallyreduced the next time, and dropped entirely for the last.
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Musosgirl thank you for your response. Did you notice a difference in how you felt after those treatments?
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Colleen, are you going back for any extra fluids? I after ending up in the ER round 3, starting round 4 I had extra fluids on day 3-4 after chemo and I felt so much better. The doctor in the ER explained that sometimes just drinking fluids isn't enough. In my case, although I was drinking a lot, the fluids were going right through me and flushing out the sodium, so my sodium levels were too low and I was still dehydrated. IV fluids worked much better. Hope things get better for you.
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Colleen, I did. The side effects didn't change, they just weren't as bad. I think our MO's will do anything to get us to keep doing treatments, anything to keep us from quitting. And when I went to the weekly treatments on Taxol, I made a new friend, another young chemo patient like me--we are dear to each other now and it's because I switched meds and we had a weekly "date!" Also, always make sure your MO and the nurses know your side effects--there are lots of meds to counteract those
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FighterGirl - Thank you so much for your comments and links. Really helpful. I'm seeing a lot of good info on the TCHP thread too!
Colleen- I'm sorry you're having such a difficult time. I hope you get an updated regimen in place so you can feel better. This is all sometimes so hard...
Take good care, everyone.
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Still on Herceptin q 3wks, and started on Tomoxifen because I have osteoporosis. It has been a hell of a year since diagnosis in August 2015. I'm going through this process all alone, and somehow I'm getting through it. Other than a friend dropping me off at the hospital for the day I had my surgery and someone else picking me up and dropping me off at my apartment, I've taken myself to every chemo session, radiation session, infusion appointments, various doctors appointments, 4 echocardiograms thus far! Have traveled by car, train, and subway to and from some appointments. So ladies when you're feeling low and feeling down know that there are others that have to do it totally on their own and carry on. Some people said you're stronger than you think. It must be the case. I was the person who would rather be dead than ever take chemo. I found the thought of it so revolting and so frightening. I made it through, however, and you will too. Yes I have neuropathy as a result of the Taxol. Yes, it is very hard to lose weight which is very discouraging. I'm careful about what I eat, and I make sure that I keep active with walking and lifting weights. As someone mentioned the MO's will seem to do anything to make sure you go to the appointments and, I have found that you aren'treally told about how intense the side effects can be. I found that many of my questions about side effects were just brushed aside. I only recently learned how high my Oncotype is, almost 60!
Wishing you all strength and whatever peace of mind you can find even if it's for a few minutes a day. That has to be a reason to all of this. Stay strong and be your own best advocate
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Blownaway, please share the station and news affiliate so we can find the story. Thanks!
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It was on ABC locally in Houston.
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Blownaway...
Thanks for the information. I've had issues with both the Aromatase inhibitors and now tamoxifen but I had no idea about breathing issues. I too have had them and now that I think about it..they started when I switched to tamoxifen. I've just gone through a battery of heart tests too! I've had PVCs ( premature ventricular contractions) for years. It quite common but since I went on the anti estrogens it is much worse. Cause and effect? Have no idea.
Although I'm better on tamoxifen than on the AI's, I too have debilitating musculoskeletal problems. Can't cut or dice in the kitchen for fear of cutting my fingers off as my fingers cramp and lock up. Understand there are vision issues too.
Feel like a marionette with all the strings(muscles, tendons) getting tangled up
Gonna meet my new oncologist soon . Let's see how he sees this but I may be done.
We're all different. I was fortunate to have had a fairly decent time of the chemo/ Herceptin/ rads.year. My troubles started two years into the hormone therapy.
Please let us know how you're doing off the tamoxifen. And best wishes. You've certainly had a tough go of this miserable ride:(
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Arlene...I did the reverse. I was on tamoxifen for just under 3 years. A weird pap causes my onc and ob/gyn to decide to switch me to arimidex. Differences for me...
Tamoxifen...horrendous dripping hot flashes, a lot.
Arimidex....hot flashes but way better, a lot of joint pain, and several arthritis related conditions. Can't swear those are all due to an AI. but I had none before I started.
Willa...I had taxol for 12 weeks with herceptin. I tolerated it pretty well. Some neuropathy in feet and finger tips....mostly they were like ice cubes all the time
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hi my triple positive lovelies!
just stopping by to say hello - so glad to see some of the originals contributing to this awesome thread
I'm 5 years out this month, and although my MO always reminds me that 5 years for hormone positive BC is not "in the clear" I'm going to enjoy this milestone anyway
thanks to all you ladies, this thread and BCO who helped me tremendously through treatment. Still on T so technically still in "treatment", come back to the site to check updated news on hormone therapy etc - so even 5 years out the information and support here is invaluable !
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I'm wondering if anyone else has experienced this ..... I completed 6 infusions, still receiving Herceptin and I had my lumpectomy - one margin was "close" .5mm. When my doctor called to give me the path report she said we needed to discuss if Carboplatin should be part of the treatment as well as radiation. I see her tomorrow - but I'm wondering if anyone else had additional chemo suggested after their surgery?? I am getting a second opinion as well in a few weeks. Chemo was far from fun, but I'll do additional chemo if it increases my survival and no-recurrence stats ..... anyone? Realized key information missing is that I had a partial result to chemotherapy - not a complete result.
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LoveOfParks,
More chemo was not suggested for me after surgery, but I've sometimes seen that happen to triple negatives who didn't have a pathological complete response. I always thought that was because chemo is the only systemic treatment available to most triple negatives, but who knows? Best wishes!
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i cant take tamoxafin because of blood clots, i had terrible side effects with arimidex, now on letrozole its better but bp is up and down so not sure if its the drug or my body? On a 2 week hiatus from drug to see if bp comes down? BS suggested another A1 inhibitors so we shall see if MO picks another. Or stays with this one. Not to many side effects with letrizole!
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Hello all - I am new to this group, but have been enjoying the discussion and support from the Lumpectomy Lounge for the past month. I just found out last Friday that I am now Her2+. My biopsy of one mass showed as ER/PR+ and Her2-, but after my surgery - the path showed differently. So now - I am meeting my MO for the first time tomorrow to find out what the plan is. For some reason - I am so incredibly anxious and worried about this. The nurse did share that I would be on Herceptin for a year - while doing my chemo and radiation. Once my nodes/margins were clear - I thought I would be doing oncotype testing to see if I even needed chemo...so when she called and said this about my Her2 - I was sorta shock and numb ALL OVER AGAIN. Is it true there has only been one study so far about Herceptin?
I am not worried about losing my hair - but more about getting a port and what kind of SE will I have for my stomach. I am very prone to C-Diff and have diverticulitis. I am worried the chemo will totally destroy the lining of my stomach and intestines - which is already so fragile.
I don't know why I am having such panic attacks about this latest diagnosis change... I had been doing so well prior, but now I am incredibly nervous.
What other things should I be prepared to ask my MO tomorrow regarding treatment?
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kdtheatre I am a 6 year triple positive survivor. (Er+, PR+ HER2+). The port is awesome. Be sure to get a powerport. If you do you can get all kinds of tests and IVs through it including dye for MRI. I didn't get a powerport but still could use it for blood draws. It saved my veins. Chemo and Herceptin can be tough on the veins. Remember you are doing this for an entire year! Oh and triple positive is one of the breast cancers that can have a better prognosis because we have all these guns to fight it with.
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You were fortunate Lago. Although I had the powerport, when I went for blood draws and other tests no one would use it. I certainly recommend it for chemo, but for the other stuff I always had to get an arm stick. The only exception was when I had my recon surgery and the IV in my arm was so painful I begged them to use the port and it worked well.
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kdtheatre,
There have been plenty of studies showing the efficacy of Herceptin. Before Herceptin, women with HER2+ breast cancer had some of the worst outcomes. It has been a game changer for HER2+ breast cancer, and has improved outcomes to the point where HER2+ patients have similar rates of recurrence/remission when compared to other, more common forms of breast cancer (e.g., ER+/PR+/HER2+).
You may also wish to inquire into Perjeta, the latest targeted therapy form HER2+ breast cancer. It's typically given with neoadjuvant chemo (before surgery), but some women have managed to get it post-surgery through adjuvant chemo.
If you're concerned about your gastrointestinal system, you may want to go with Taxol rather than Taxotere. Herceptin is typically given with a taxane, and Taxol is Taxotere's gentler cousin.
I love my port. I had my last Herceptin treatment in 12/15, but I've chosen to keep my port for now. I'm getting Zoladex monthly, so I just have it flushed out every other month. I have used my port for all sorts of fun things -- infusions, heart scans, PET scans, blood draws, etc..
Best wishes!
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KDTheatre:
Hello - I'm so sorry you are here but I'm hopeful you will find some help and peace.
Wanted to say I feel for you. I had a similar situation. My original core biopsy was HER2- but the final surgical result was HER2+. I think this happens a lot because the tumors can have areas that are both HER2+ and HER2-. In any case, I totally LOST it at the HER2+ news. Crying, hyperventilating, the whole paralyzingly ugly nine yards. I think it was so difficult because everyone had prepared me for what was going to happen assuming that I was HER2-. My nurse navigator kept referring to ER+ /HER2- as the "friendly" cancer. In hindsight, I wish she would have mentioned that not only were we waiting on the final pathology report for the size of the tumor but also the final HER2 status. I had laid out a path of how I was going to survive and then suddenly the path was lost. You will get your bearings again. Herceptin has been around a long time now. It has a great track record and works well. I did see several oncologists before choosing one and they all said that with Herceptin we can likely do just as well as those who are HER2-. .I've only completed #3 of 12 treatments so there are others here with much more experience and knowledge who can help you a lot. BUT I do know you can do this.. please breathe... and remember you are not alone.
As far as your GI concerns, I, too, have another issue that I'm really worried about in terms of the effects of chemo. I was scared that my concerns would be lost on the Oncs because their primary concern is to keep cancer at bay. However, I've found that if you advocate for yourself and keep your concerns in the forefront they will do whatever they can to make you happy and feel safe- whether that's changing the drugs or the timelines,etc. They truly want you to be comfortable so you can complete your protocol.
Hugs to you. Take good care.
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More women are eligible for herceptin under new tests and guidelines. Whether that's good or bad is undetermined.
Updated testing guidelines make more women eligible for herceptin, yet benefit uncertain
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