TRIPLE POSITIVE GROUP

BBwithBC45

Moodyblues, for me it was cottage cheese that I was able to stomach. And potato dumplings.

Taco1946

HapB - I did 8 weeks of Taxol and herceptin and now just herceptin. I was scheduled for 12 but had very painful neuropathy and my MO felt that the extra 4 wouldn't give me much added benefit. It seems to me that many don't finish the full course of Taxol or start getting reduced dosages. but I haven't read a good explanation about why number of treatments get reduced other than patient intolerance. My MO seemed almost flippant about my stopping although I struggled with it. Even though I am over 70, I wanted to do everything I could to get ahead of this disease. As to other SEs, what I initially thought was nausea really probably was some gastric reflux as it cleared up quickly with nexium. I lost my hair everywhere. Lots of insomnia the first night or two from the steroids. Constipation is a problem for many of us. I really learned to be certain I was "cleaned out" before each infusion or I was miserable on day two or three.

Before Taxol I got steroids, anti-nausea meds, antibiotics, benadryl. Took 40 minutes to do that before the weekly hour Taxol. Herceptin took 30 minutes. When I went to Herceptin every 3 weeks they took 90 minutes to do the first infusion and decreased it by 30 minutes each time. I am now in and out in about an hour, depending if I am scheduled to see MO that visit. I haven't been able to specifically identify any SE from the herceptin. There is a weekly Taxol thread here if you haven't found it. You might also want to look for a group that says something like "starting chemo June 2017. My Feb. group has gotten very close. Someone smarter than me set up a private Facebook group which I love as I am a regular Facebook user. I chat with them more regularly than I do the folks on the BC site. We have shared some wonderful pictures that way.

bareclaws

HapB, I am 65, and just had 7th Taxol with Herceptin. My early and most difficult SE was swelling of legs and feet a few days after infusion, but that was probably due to steroids. My dr reduced the doseage of Taxol and steroids and gave me a week off between third and fourth treatment. It's been quite tolerable since then. I've learned how to handle the swelling with diet, too. Other SE is loss of sleep the first two nights, but I've learned to deal with that using marijuana edibles. Later in the week brings joint pain, especially noticeable in the wee hours of the morning. Vaping marijuana helps that, too. I hated the Benadryl given with infusion, so have declined that, taking a Claritin instead. Much better. I ice fingers and feet during infusions and so far, so good. No discoloration or lifting of nails and no pain. I take a prescription B vitamin complex that's supposedly helping with that. I lost hair during AC but it started to grow again immediately and has continued to grow during Taxol. I'm mentally prepared in case I lose it again, but it feels strong and healthy. I encourage you to keep active, exercise as much as possible, eat well through Taxol, if you can. Of the three chemo regimens I have experienced (TCHP, AC, TH), it has been the easiest by far. Of course, everyone is different. I just want you to hear something other than a horror story.

shelabela

I haven't posted a whole lot lately. I had my 3rd AC treatment and I hate this. I am so tired, it takes everything I have to even eat.

So far this week I don't have mouth sores, thankfully. Those sucked.

Hope everyone is having a good weekend

wabals

HapB I am 73, 71 at dx and I never considered not doing chemo. Luckily I was offered the ATEMPT trial and randomized to tdm1. But I still had infusions every 3 weeks and flew from Fl to Hopkins for my treatments.

Her2 is nothing to fool around with

BBwithBC45

HapB, yes, I did 12 week Taxol/Herceptin and then just Herceptin for the rest of the year.

It has been over two years since I finished Taxol, so the bad memories somewhat faded. For me the worst was nausea. For some reason Zofran did not work on me and my insurance would not approve any other anti-nausea meds (may they get what's coming to them for allowing me suffer for months due to their greed).

I do remember that the side effects had a cumulative nature. The first 2-3 weeks I was feeling well and I thought that this chemo wasn't so horrible. But with time the side effects got stronger, and like I said - the worst was nausea. I never threw up, but the nausea lingered for weeks after I was done with Taxol. I also had some diarrhea, sometimes constipation, but it wasn't overwhelming.

I did cold capping and was able to save the hair on my head. My eyelashes and eyebrows did fall out, but not until after I was done with chemo. I am still fluctuating with my eyelashes thinning every few weeks and rebounding, etc.

My fingernails survived quite well. They were brittle, but I didn't lose any of them. My big toenail lifted halfway and was discolored for a while, but never fell off either.

I believe with Taxanes (Taxol, Taxotere) neuropathy is a big concern. My MO said that some people thought that L-Glutamine and Vitamin B6 might prevent neuropathy, although there was no proof that it worked. He was OK with me taking them and so I was taking them religiously throughout chemo and for few weeks after chemo ended. L-Glutamine powder had a disgusting taste to me and was expensive, but I don't have any neuropathy now. Part of my left foot got numb at the very end of my chemo and it took about a year for the numbness to slowly go away, but today my feet and hands are perfectly fine.

I was told that hydration was very important, so I forced myself to drink a lot of water. It tasted horrible as the other ladies mentioned. I couldn't find anything else that I could drink in large amounts and that would taste better.

Also, I was told that exercise was important in order to tolerate chemo better. I hate exercise, it bores me to tears, but I forced myself to walk at least 30 minutes every day.

I had some fatigue, I still often feel it. At this point, I probably cannot blame chemo anymore and maybe should chalk it up to Tamoxifen? Or maybe it's just a part of aging. Sigh.

I did well with Herceptin, had a little runny nose, few aches and pains (again, maybe Tamoxifen or aging), my heart did fine throughout the whole year.

All in all, my MO said that I did fabulously well with my chemo. I'm glad I did go through with it; this way I know that I used all the weapons that modern medicine was offering me to fight my BC. Well, at least all the weapons that greedy health insurance company would approve.

Keep in mind that Taxol is one of the "easiest" chemo regimens to go through and chances are you'll do well. Statistics are on your side.

Try to find the thread for all the ladies who start chemo same month that you do - excellent advice from Taco1946. I was a member of March 2015 group and it was a great "place" to talk to others who went through chemo at the same time. We commiserated, compared symptoms, lifted each other up. If nobody started the June 2017 group yet, you can be the founder. :-)

Good luck and best wishes.

BBwithBC45

HapB, I'm sorry you are having tough time with deciding. What is your MO saying? How much do you trust him/her?

I have a high blood pressure too; although, mine was diagnosed a couple of months after my cancer diagnosis.

My MO said right away that due to Her2+ and the fact that I had multiple tumors (even though they were all tiny) he recommended chemo. Luckily, I trusted him completely and never thought to question his recommendation so I didn't have an additional anxiety of having to make a choice.

My husband happens to be a physician and I learned a long time ago that most of the time the doctors knew what they were talking about and that Dr. Google gave me way more anxiety than I could tolerate. If I read up on too many opinions, I tend to suffer from "analysis paralysis".

One more thing to keep in mind - people most of the time write about horror stories, and not about how easy their treatment was, so this is somewhat skewed. I don't think we can find a true representation of how well or badly people are doing with various treatments.

Have you checked out the weekly Taxol group? https://community.breastcancer.org/forum/69/topics/788735?page=252#post_4980133

Hugs and best wishes.

ElaineTherese

HapB,

My blood pressure was crazy, out-of-control before chemo. I asked my PCP if that would interfere with my treatment; he said no. During chemo, my blood pressure was awesome! But, it went back up afterwards, and my PCP worked with me to find a solution. I'm now on a three drug cocktail, and my blood pressure is finally under control.

moodyblues

BB   Thank you!

Anonymous

Hello!
I'm just starting down this chemo road... starting June 16th ...
They are putting me on
TCHP +neulasta for six rounds ....then if that shrinks the 1.7 cm tumor down enough ...then its surgery ...maybe radiation .... then round out the year with Hercepton (sp?) and Perjeta .... then 10 years with Letrozole ...

I'm so nervous about the chemo... I can take a lot but the horror stories are getting me so scared....
Has anyone have any good advice about doing chemo TCHP ?

Anonymous

This is what I'm worried about ....I've been on HP medication ( one pill a day ) for 20 plus years... I'm scared what the chemo will do with it
I'm just plain afraid...

Anonymous

Hap,
I'm stage 2A with 1.7 cm tumor with one 9 mm node involved ( confirmed by MRI ) grade 3 and Triple Positive ..

Thank you ... this is something to look at and to ask my MD !

Anonymous

Hap,
I did the http://www.lifemath.net/cancer/breastcancer/therap... and this is what I got.. now this is not with me putting in my chemo .. because it didn't have what I'm getting which is the Taxotere,Carboplain,Herpeptin and Pejeta for 6 rounds ..

If I'm reading this right it will give me 4.2 years back so instead of having 28.3 more years on the ave I will have around 23 years give or take..that would put me at 78 ....and this is with me not putting in my chemo ..
Its all can be confusioing

Classification: TxNxMx AJCC Stage: unknown
Cancer Mortality:	18.4% expected 15-year Cancer Death Rate. 19.2% 15-year Kaplan-Meier cancer death rate
Life Expectancy:	Without therapy, this cancer shortens the life expectancy of a 55-year-old woman by 7.3 years. (from 28.3 years to 21 years
Therapy benefit:	The therapy selected would improve average life expectancy by 3.1 years, or 1130 days over expectancy without therapy. 42.9% fewer cancer deaths after 15 yea

wabals

HapB I was on Kadcyla, a targeted therapy. It is herceptin plus emantsine. It was a clinical trial

SpecialK

posey - you asked about experiences with Femara. I started on it summer of '11 as my MO favors it due to a slight performance edge, Mylan brand was the generic my local pharmacy carried. By six months in I had a trigger thumb and enough bone loss (combo of chemo and antihormonals, I had pre-existing osteopenia from a total hyst/ooph at 45, known baseline bone density prior to treatment) to warrant starting Prolia injections. I switched to Arimidex, Accord brand. Stayed on 18 months, original trigger resolved within the first six months but developed new ones at the 18 month point, along with an inflamed knee which was fixed with a cortisone injection. During this total two year time period I had relatively minor joint pain, and some insomnia, which I expected.

What I learned was that brand matters, each generic has different additives and fillers. I went back on Femara at the two year point, on Teva brand. No problems for two years. Switched to Roxane brand, no problems for another two years, but it is no longer being made. This is unfortunate because it actually has fewer additives and fillers than the brand name by Novartis - my insurance will not allow the brand name due to cost. Another thing I learned, for me as an individual, switching to an anti-inflammatory diet (no sugar, dairy, peanuts, gluten, eggs, soy or corn) allowed me to control my weight and decrease the typical side effects of joint pain and hot flashes. I am in year 6 of anti-hormonals and I plan to continue as long as pissible

kae_md99

any reason why some are on anti hormonals for5 yrs and some are on it for10 years?

ElaineTherese

kae,

Some breast cancer patients get the BCI test after five years to see whether or not they are at high risk for recurrence. If the test shows a high risk of recurrence, these patients are advised to take anti-hormonals for ten years.

Anonymous

Kae... what I've read so far.. the research is showing it better odds with 10 years instead of 5yrs ....

Anonymous

I think it worth it...I think LOL... I'm going to talk again with either my NP or Cancer MD this week for sure..
thank you

Anonymous

Thank you Elaine! You are a wealth of info!

Denise T

SpecialK

kae - initially studies were done keeping patients on anti-hormonals for 5 years, and there was some degree of carryover protection that extended beyond that even though the medication had been stopped. Then a study was done on Tamoxifen for longer than 5 years and the result was extended benefit in recurrence prevention.

http://ascopubs.org/doi/abs/10.1200/JCO.2013.54.22...

This initiated studies of the same type for AI drugs.

http://www.nejm.org/doi/full/10.1056/NEJMoa1604700

Also, the Breast Cancer Index (BCI) from Biotheranostics looks at your original tumor with a genetic assay and provides a two-pronged predictive and prognostic result that indicates recurrence risk beyond five years, and benefit from the drugs themselves.

http://www.biotheranostics.com/patient-breast-canc...

Some oncologists are not yet sold on continuing anti-hormonals beyond 5 years because of the side effects some patients experience, others use available science in tests like BCI (mine does), and others just extend their patients to 10 years as policy without any testing

Anonymous

yeah...that confuzzy me too.. so I didn't add it ..

kae_md99

thanks ! is BCI expensive? my insurance might not cover it...can it be done at mastectomy

Taco1946

Like, Wabls, I'm NOT sorry I did the taxol and as I said, was prepared to tough out the last four. What I read about being HER+ scared me too. From all I have read, taxol is definitely the mildest of the chemo regimes, in fact, someone called it "chemo light." For good or bad, I never lost my appetite. I know others are more conscious of diet than I have been. I'm not ready to give up my nightly ice cream yet!

I have no SE I can attribute to the herceptin.

I never had trouble with nails - had gel fingers and a regular pedicure the whole course. My hair has been slow to come in. No body hair yet (last Taxol was March 21st) and basically "peach fuzz" on my head. I know I am slower than many. In fact, several on the taxol thread talk about it starting to come back before they even finished. Although a friend had given a number of wigs, I find myself very comfortable with scarves. At our age, everyone knows someone who has cancer and they are cooler than wigs. The other thing about being older is that I think many of our friends are more supportive and less threatened by our disease.

Water, water, water and exercise if you can. Even when the neuropathy in my hands was bad, I walked. I play golf a couple times a week and have started going to a stretch and flex class.

Bearclaws, I'm glad the marijuauna helped. It did my brother in law with his esophageal cancer too. Medical marijuauna is legal here in AZ (after many battles at the polls) but I never thought to ask for it.

HapB, my best friend lived with stage 4 cancer for over 5 years. She entered hospice about the time I was diagnoses and died the week before I started chemo. I learned a lot from her. She never let herself by a victim of cancer. She traveled, had time for her grandchildren to know and love her and was able to manage pain. She set relatively short terms goals for herself. (One was that she wanted to live long enough to vote in the 2012 election so she could cancel out the vote of a friend - she did and she got to vote in 2016 too.) What I learned from her was that I would know when I had had enough. And that isn't yet for me! Whatever you decide, you will find support here.

SpecialK

hap - the only number that matters is if you are one of those who doesn't survive due to lack of treatment - that can't be accurately predicted by anyone, physicians or calculators. Your decision depends on whether you are willing to risk going without adjuvent treatment, or risk the side effects of doing that treatment.

Taxol and Herceptin is too new a protocol to be listed on the calculators. It is usually only advised for those Her2+ patients with stage 1 sized tumors.

kae - BCI is usually done at the 5 year point after you have been taking anti- hormonals. My insurance didn't cover it, but Biotheranostics doesn't charge patients with intact insurance whose policies deny payment after their internal ins department appeals. I believe this is because they are trying to build their database and hel broaden the use of their test among more oncology practices. The only thing I had to pay for was the nominal fee to my hospital's pathology department to prepare the specimen of my original tumor and ship it to California

Taco1946

Anyone with cancer (and probably most other diseases) has to make the decision that feels right for her. And those will be different for each of us based in part on other challenges we have faced in our lives. I read the other day that only about half of all patients finish off 5 years of AI. So clearly women are making quality of life decisions all the time. I had brain surgery 10 years ago and would never do that again!

My DH of almost 51 years has promised that he will respect my choices and not badger me when I say enough. With nine stents and a pacemaker, he also has requested to not be recessitated if he goes into cardiac arrest or has a stroke.

Not easy decisions for any of us. And they may get harder as we age.

ElaineTherese

Yes, Taco, many women do quit hormonal therapy due to the side effects. Indeed, some women have even said that chemo was easier than taking aromatase inhibitors. It's all so individual and difficult to predict. I would encourage women to try hormonal therapy, but if it's unbearable, I never blame anyone for quitting. To each her own.

SpecialK

hap - it seems like you are leaning away from the Taxol and towards the Herceptin only - which I think is a potentially viable choice for you based on both the calculators and your doc's recommendation. I think if your MO felt that it was not a good choice it would not have been endorsed - so that is worth something. In the past, Herceptin has been found to work synergistically with taxane based chemo in the research that Dr. Dennis Slamon of UCLA used to bring Herceptin to the market for all of us, just now is Herceptin alone (or with Perjeta such as the current trial) being considered as an early stage stand-alone treatment. I wish there was more data available on that modality so that it could be used for guidance in decision making - as with many things associated with cancer treatment, it is on the horizon, but timing for us as individuals is not always optimal.

kae_md99

wow Special K,just realized we got treatments at the same time 7 years ago

SpecialK

kae - wow! I never noticed your start date - funny coincidence!