TRIPLE POSITIVE GROUP

Juli24

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

Tresjoli2

bird...glad to know the estrogen is working. My MO and my GP both said it was totally fine to use. But I'm afraid...it's sitting in my medicine cabinet unopened. My sex life is down in the gutter, I'm in marriage counseling after 14 years together, and I'm trying to resuscitate sex in my marriage. But it hurrttttssss! :-(

Hap I am considered post menopausal because of the lupron and am on tamoxifen...maybe that would work better for you than an AI?

Cherry-sw

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

bjquilter

Juli24

I will truly be praying for you. That is what I ask for when anyone asks if I need anything.

KimCee

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

stephaniebc

kimcee, i had taxol and zero neuropathy but as someone just pointed out we are all so different with regards to both the response to treatment and the side effects.

ElaineTherese

kimcee,

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

Cherry-sw

Hi stefaniebc, thank you for reply. I have an update, they are not offering me AC but EC (epirubicin) which is an antracycline too. I do not know what is the difference, SpecialK might know, but apparently they are not using AC here in Sweden. The oncologist is not pushing for it, I was because I am worried that my tumor is borderline and I wanted to know whether we can add something more to my treatment but I was not rxpecting an antracycline. And it does sound awful of what I red about AC

Cherry

SpecialK

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

Cherry-sw

PoseyGirl, it is usually in the corner of one’s eye and it is round so you may need to talk to an eye doctor. Usually they want to have it checked immeadiately but they cannot treat it until it actually starts detaching. I got it checked, they gave me a booklet and I went home. In vase anything changes in my field of view I have to contact the clinic

Cherry-sw

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

toughcookie_21

Cherry, is the flashing always there? I get ocular migraines which have flashing lights that basically obscure your entire field of vision. They start out in the corners of my eyes and then advance until I can't see anything but flashy lights. I got them a when I was pregnant and when I'm super stressed out. I went to an ophthalmologist to get it checked out because it is very scary when it happens and they mentioned that it can develop into retina detachment, but they felt that it was triggered by high blood pressure for me.

Cherry-sw

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

KimCee

lol Elaine, after the bmx...I hope to never wear button shirts ever again .

SpecialK

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.

PoseyGirl

Hi KimCee,

I had Taxol which ended a year ago, and so far no neuropathy. Having said that, I do know others who had it so I'm getting the impression it could be as many as half of patients getting it...

Thanks, Cherry, for the tip. I will set an appointment with my optometrist.

Sorry, Tres, about things at home. That is so very stressful. I've known a few women who have had marital issues during treatment; it's the last thing you need. I truly hope your counseling is helpful.

SpecialK

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.

meg2016

For what its worth, I found the AC to be more tolerable than the Taxotere. I had neuropathy on THP among many other side effects, but started accupuncture (at my MO's suggestion) and it went away. I had an allergic reaction to the Taxotere as well as spiked a fever after almost every round. AC made my stomach a little rocky and I had a lot of fatigue, but my heart was healthy going in and hoping there aren't longer term effects. Otherwise it wasn't so bad. The AC also really did work, I had an MRI between my two treatments and after the last one (AC) so I'm glad I did both.

Cherry-sw

Thank you SpecialK, I am really trying to do an assessment here , still await a call from another doctor and have discussed it today with my cancer rehab nurse who promised to talk to the oncologist about giving me more explanation regarding the both treatments before we take a decision, I will go through with my Taxol on Monday and then they want an answer by Tuesday.

Cherry-sw

Hi toughcookie, the flashings just occur in the corner of the eye, and my are often happen in the bathroom, somehow the type of light we have there is causing them but they even happen at night when it is dark. They last a less than half second and I recall I had them before my diagnosis too. The ophthalmologist says that it happens to people when they grow older, I am nearsighted too and wear glasses but am about under -3 on both eyes. In the booklet I received from the eye clinic it says that when you suddenly see the grey area in the corner of your eye so that you vision field gets smaller when you are looking at the big picture then you need to rush to the hospital, because it means that the fluid from the vitreous body has leaked and the leakage has to be fixed by laser. Before that they cannot do anything. They also say that you cannot be doing heavy exercises, no heavy lifting, no stress and I was like ok how can we with our diagnosis manage that? I get chemo that is hard on the whole body and our seeing is one of the most important yet fragile senses. We get 80% of all information through it and 50% of all energy our body produces is going to maintain the sight. We are also supposed to exercise as much or even more than healthy people do. So this retina detachment is another problem of mine why I am hesitant regarding an anthracycline.

KimCee

Thank you all for your replies regarding neuropathy. I am going to do the Taxol and Herceptin. I will take the B vitamins for sure. Will look into the ice for my hands and feet. Getting my port next week, then the fun begins again.

I moved to Florida two years ago, originally from NJ. My friend from my hometown was diagnosed at 34 with BC in 1995. She was diagnosed again, this July, 22 years later. Me 18 years later. I find this so bizarre. Unlucky, luck of the draw. May we all remain cancer free

coachvicky

KimCee,

I would encourage you ask for a prescription vitamin B. Here is mine: https://www.webmd.com/drugs/2/drug-77966/folbee-oral/details

I am convinced I had little neuropathy because I was already taking this Rx and continued it. Of course, no one my Oncology Team agrees with that! LOL.

Vicky

Cherry-sw

Hi KimCee, is your tumor exactly 1 cm or larger? I am doing weekly Taxol and Herceptin but evaluating adding another chemo, you saw my posts, it is all over the boards now.

Cherr

KimCee

Thank you Vicky... I will definitely do the Rx vitamin B.

Cherr...my tumor was 1.5cm... I have read so much but will check your posts out now. Thank you too

DizzyGirl

I asked my Oncologist about the tumor marker test and she said they only do them for Stage IV. They also only do scans if you present with symptoms lasting over 2 months. She said they have proven that there is no advantage to yearly scans as the outcome and treatment end up being the same. There doesn't seem to be any advantage except you know earlier that it has spread, but that is not reason enough. This ASTOUNDS me. I had PET and MRI at diagnosis and again after I finished chemo but nothing since then. It is so hard to think that the only monitoring they are doing is a 3 month clinical exam. Why did we fight so hard to then get left in limbo. She said my risk of recurrence is in the single digits (having completed chemo, complete metabolic response, BMX, radiation, Herceptin and Tamoxifen) but if it does come back as HER2+ it is usually in the first 3.5 years.

I guess I am going to have to figure out how to live with this constant worry that it will come back.

DizzyGirl

Cherry-sw

Hi KimCee,

I replied to you already. My tumor is exactly same size but is of higher grade and Ki is double as high as yours.

ElaineTherese

DizzyGirl,

I still get mammos, so there's that. I'm still working full time and have high maintenance children -- I think keeping busy keeps the worry at bay. It is what it is.

SpecialK

dizzy - your oncologist is stating what he/she does as far as tumor markers and scans - this is not universal. I have had multiple tumor markers each year - and I am in year 7 from diagnosis at stage IIB, and have also had scans - some based on time, some on symptoms. My oncologist does not require two months of a symptom before scanning. He will order tests and scans immediately when notified of an issue. It is my personal opinion that the idea of "if you progress to stage IV it doesn't make any difference" is outdated thinking. Reducing tumor burden, innovative surgical and radiation techniques, new drug combos all could mean a longer survival, and finding something earlier may mean you have more options. When I read about newly diagnosed people looking for an oncologist and asking us what should they be asking about, I always advise them to determine how they will be followed after treatment is over. You are far from alone in your dissatisfaction with this aspect of your care.

coachvicky

DizzyGirl ...

Can you change Oncologist? Maybe get someone that thinks more like you do or at least does what you want. As much as I complain about mine when push comes to shove he will run the tests that I want.

KimCee ...

Glad you will get Rx. Start immediately b/cI think the vitamin is already in your body working. But I am not an MD. I do have some common sense. LOL

Vicky

SpecialK

hap - part of the problem is that you most likely went to two NCI centers or major med centers - they are hamstrung by the policies that they have to adhere to for retention of their NCI creds. They tend to be inflexible and have a one size fits all type of approach. That is one of the issues I have with this type of accreditation - they have limitations based on what their accrediting bodies tell them is the proper policy. I am seen in a private oncology practice, have many friends treated in the same practice - and we all live 10 miles from the only NCI center in the state of Florida. This is why we don't go there for breast cancer treatment. My oncologist has the freedom to order whatever he deems appropriate and my insurance has covered every test and scan in full.