TRIPLE POSITIVE GROUP

hap - the majority of people start anti-hormonals shortly after finishing chemo, while on Herceptin. My oncologist would not have let me wait until the end of Herceptin to start.

Hey ladies on the sex topic, I missed the cream you are referring to...I need something!

Sex is not of interest to me for the most part, partially due to the pain and partly due to overall sex drive being low. If I can take care of the pain, that's half the battle

Mommato3, thank you, how did your oncologist explained the necessity of AC to you? Was it the size of your tumor or Ki67%? I see that you had clear nodes, did you do it adjuvantly? I have another problem, I see flashes in the corner of my eyes and I went to the ophthalmologist who said that it is a sign of retina detachment but so far it looks fine but I experience that the flashes are coming more often the days I get infusions and right after it. I am afraid that a further regimen can cause more damage on my eyes.

HapB, I have been getting them sometimes even before diagnosis. Then when I was reading this thread from the beginning there was a lady, lago, who mentioned those and I thought this is what I am having. She explained that her doctor mentioned the retina and I talked to my GP who wanted me to see an eye doctor immediately which I have done and they told me that it is a sign of retina detachment but until it actually detaches and the field of view is affected they cannot do anything. It can happen to anybody I was told, it comes with age, but now when I am so attentive to everything what is happening with my body I see the flashes more often after the infusion and subsides few days after. This is another reason I am hesitating about AC, how will it affect my eyes. There was another user back in 2012 or 2011 in our thread who was diagnosed with cataract after Tamoxifen, apparently it can cause cataract.

cherry, i got neoadjuvant AC then weekly taxol (+ herceptin and perjeta) and in hindsight i wouldn't do the AC if i could do it all over again and were given a choice (i was not). my triple positive tumor only shrunk by 20% with the brutal, brutal AC but it was almost completely gone after ONE infusion of THP and i ended up with a PCR at the time of surgery. i for the life of me cannot understand why they don't start with THP in the neoadjuvant setting in order to skip the dreaded anthracyclines should a PCR happen at the end of the taxol cycles. anyway: in your shoes, i wouldn't do the AC if your oncologist isn't pushing for it.

Hi Stephanie,

To your comments about "why not Taxol first", they can't give you Herceptin and AC concurrently because of the risk to the heart. They probably don't wish to interrupt Herceptin for a couple months. Herceptin can start with Taxol and continue on.

And regarding assessment of response to treatment...it's hard to know fully how the tumour has responded until the definitive surgery and pathology. They didn't think my tumour was shrinking after my AC...in surgery it was all gone. Scans can get a decent picture, but they can't accurately indicate dead cancer.

I believe I had my best, most aggressive response to AC, so I don't think we can know which regimen will be the best for one person over another.

There's no doubt that AC sucks. And at stage 1, I realize the choice is tougher. I'd still take it, personally. I don't at all judge those that decline. As a stage 3'er, I need everything that modern medicine can offer. But I'd hate to be stage 1 and be that 5-10 percent that recur. Soon enough, tests will be available that will definitively determine personalized medicine - can't happen soon enough

On another note, a friend of mine is waiting to hear if she's been accepted into a trial. Experiments have suggested 50 percent reduction in recurrence. This is for ER positive, Her2 negative people only. And it's a 10 year trial...that's awhile, but if you get into the trial... I hope we get to see another breakthrough for our subtype soon. Herceptin was 12 years ago: we are due!!!

I have noticed I get this round shaped flash in my left eye when it's closed...maybe I'm experiencing this retinal detachment?

Hap, I can relate to your AI issues. For me they were terrible......just sucked the life out of me between pain, mood swings, severe depression. I was determined to do whatever it takes to avoid a reoccurrence so I tried different brands & all the tricks. Finally I sat down with my oncologist & had a heart to heart. I could not live the way things were going. Quality of life is just so important. We went over the charts. I can't remember exactly but 3 or 4 percent sticks in my mind as an improved outcome. Absolutely, for me, it was not worth it. Granted, some people do well on AIs...no problems. Others don't fall into that category. I recommend giving it all you've got but if it is making you miserable you should talk to your oncologist about options.

Will I feel like I sabotaged myself if God forbid I have progression. I think not. I'll just deal with what comes next.

On another note, I am dealing with what I believe is a side effect of chemo. I had a knee replacement five years ago. It has failed. I am scheduled for a new one on the 24th. I am trying to be brave but that is a bear of a surgery. I am just so done with pain &I can't see the light at the end of the tunnel. My hubby will take good care of me but it scares the bejesus out of me that they send you home the day after surgery. So if you think of it I would very much appreciate prayers during that time. I know they work & I'll really need and appreciate them. You'd think dealing with cancer would be enough. This surgery is over the top. Gentle hugs to you all

toughcookie21, TCH is still a tougher regimen than weekly Taxol, but for some reason they do not offer that to me, and I saw a study that show that adding AC does improve survival. Was your oncologist equally comfortable with givning you TCH or T+H? My tumor was 1,5 cm, basically borderline and it Ki67 50%, that is why I was questioning my treatment, if I weren’t it was confirmed by four different oncologists from two different clinics, one of them being a specialist when it comes to Her2 tumors. I was hoping for an additions target therapy as Perjeta but they do not use it adjuvantly here. And of course the discontinuing Herceptin is a major issue for me

Hi everyone,

I saw the oncologist today and was given a choice regarding treatment. I was not ever planning on ever doing taxol for fear of neuropathy. I did taxotere in the past with no problem. Well except hair growing back thin, sparse eyebrows and lashes. So aggressive treatment would be TCH. Less aggressive, which he recommends is T + H. TCH has my taxotere and TH has Taxol. How many of you who had Taxol did not end up with neuropathy?

Thanks so much

kimcee,

I had Taxol and developed a little neuropathy in my fingertips. I just wore fewer button-up shirts!

cherry - epirubucin is the anthracycline used outside the U.S.

SpecialK, I assume it does not differ much? I red another thread on Taxol+Herceptin, you posted there and mentioned fluffiqueen did it as well and that she had smaller tumor, was it over 1 cm? I checked the boards and what I see is TH must be great option for those who has really small tumors, but mine is not that in particular small but I am not comfortable with an antracycline

Mommato3, we basically have the same diagnosis, your tumor might be slightly bigger, mine was over 1 cm. They do not do staging here, you do not get it in your diagnosis. They say instead this is what we offer for this size and type of tumor

cherry - I believe that epirubicin is actually supposed to be a little more favorable as far as cardiotoxicity, while still maintaining anti-tumor efficacy. As far as the actual size of fluffqueen's tumor, I don't recall if it was over 1cm, but I believe she was stage 1, so 2cm or smaller.

kim - I had Taxotere, but it can also cause neuropathy. I took L-Glutamine (30g a day, in three 10g servings dissolved in a cold, non-acidic drink - it is tasteless), and a B6 daily throughout chemo. My MO was ok with this. I iced, but less for anti-neuropathy and more to prevent nail lifting/loss. I did experience neuropathy from the first infusion - feet, fingertips and tongue/face, but it resolved prior to the next infusion 21 days later - for the first three treatments. After that it remained, but stayed stable and fairly mild. It did resolve completely about 90 days PFC, and the only lasting issue I have is I can't wear high heels for very long, but that may be from anti-hormonals, or just age. I don't have many occasions to wear them anyway - I'm a FL flip flop and sandal girl at this point. My dad had Taxol twice, and didn't develop any issues with neuropathy.