TRIPLE POSITIVE GROUP

TTfan, I've been on Tamoxifen for almost 15 months with only minor side effects that I can tell. It's definitely hard to tell the difference between post Chemo 'permanent' SE's, Tamoxifen, and just general run of the mill menopause SE's. I have generalized muscle and joint pain, most of which was present before treatment, but has definitely gotten a bit worse. I seem to be more prone to and have more difficulty healing after minor joint and muscle injuries. The only SE I can definitively pin on the Tamox is dry eyes, which is annoying, but not bad enough to start up with the drops. I'll be switching to an AI drug come fall and am definitely nervous about having bad SE's. Won't know until I try though.

TTFan-I have been on Tamoxifen for two years. I do have side effects. What I want to share with you was that the generic brand of Tamoxifen can make a difference. There's a thread about that too. I was ready to give up because I couldn't see clearly. I took a break from the drug and then switched manufacturers. I still have side effects but I can see clearly! So, if one doesn't work try another one (Teva, Mylan, etc).

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

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.

Survey Monkey

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

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.

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?

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.

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.

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.

Blownaway, please share the station and news affiliate so we can find the story. Thanks!

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:(

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 !

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!

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?