TRIPLE POSITIVE GROUP

Cross-post from the Weekly Taxol group:

Hi fellow Taxol warriors, I've noticed a few inquires recently about SEs from the weekly Taxol regime. I've been keeping track of my response to it and thought I would share my experience so far. Keep in mind that I am on the LOW DOSE weekly Taxol which I think is much more tolerable than the regular (less frequent) dose. I am receiving the standard treatment of 12 low dose weekly Taxols along with Herceptin. I am currently on cycle 9 of 12. My start day is Monday. I began on Monday, June 5 and should end on Monday, August 21.

My treatment:

Pre Meds (day of): Benadryl (IV). Anti-Nausea (IV), Decadron (IV),

Chemo meds: Herceptin, Taxol (low dose for my body weight)

Cycles 1 – 3

Side Effects:

·Benadryl pre-med: Drowsy after treatment, need a nap; this continued throughout all 12 cycles of treatment

·Steroids in pre-meds: Super wired tired. Little to no sleep Monday ("day 1" – chemo day) until I figured out which drug helped me sleep (Ativan).

·Taxol: general fatigue, slight blood blown from nose, vag. discharge, slight constipation, surprisingly, hair stayed strong, no shedding at all, appetite fine. Fatigue was heaviest Monday-Wednesday (days 1-3)

Cycles 4 – 6

Side Effects

·Steroids: on my third treatment, MO reduced my steroids by half which helped my jitters; still only getting 3-5 hours on Monday (day 1) because so wired

·Taxol: four days after treatment #4 (Thursday), I noticed significant hair shedding. This has continued – every morning and evening, I brushed my hair out in the shower stall and just gently ran my hands through my hair. I don't think it would have ever stopped releasing, I just stop after a point, put everything in the trash bin and take a deep breath.

·Mild fatigue, still no nausea!, appetite is normal, minor bone aches, mild constipation, still have: blood blown from nose, vag. discharge

·My days 5-7 (Thursday to Sunday) are usually fine. Occasionally I will crash in the late afternoon on one of those days – enough to miss out on an event or family time. A little emotional/moody/irritable after cycle 6.

Cycles 7-9

·Steroids: still jittery on day 1. After cycle 7 for example, I stayed up, pretty alert, until 2am and only slept until 5am. On cycles 8 and 9 I stayed up late and was able to get to sleep around midnight and mostly slept until 6am - not bad!

·Sleeping is fine on my days 2 and 3 (Tues and Wed) when I can take an Ativan to help knock me out. On days 4-7 (Thurs-Sun) it is sporadic – some nights I sleep ok but other nights it takes 1-2 hours to get to sleep and then I am up every 1 ½ hours. Tylenol PM (two 500 mg pills) seems to work better for me (though not a guarantee) than Trazodone (one 50 mg pill; with two 50 mg pills, I was too groggy/heavy but still waking up every 1 ½ hours).

·Hair continues to shed. In cycle 7, my part was wide enough and an emerging bald spot on the back of my head put me into hats whenever going outside the house. Eyelashes and eyebrows are still intact.

·Fatigue seems heavier, minor hip bone aches particularly when nap/sleeping, appetite is still good, mild constipation

·The big change beginning heavily in cycle 7 has been I feel so emotional. Lots of crying, feeling desperate/sad. Often moody and irritable, snapping at my family and generally feeling down. I discussed this with my MO on the day of my chemo #8. We discussed and she prescribed a low-dose antidepressant (Citalopram 20mg – ½ pill daily for first week, then full pill daily). It may take a couple weeks for its effect to kick in, but I already felt better having talked it through and made a plan.

I am at the end of my cycle 9 today and I have to say, I feel pretty good. Fatigue has been minimum this cycle and I feel, emotionally, more like myself. I'm getting more confident wearing headscarves and hats out and about. The end feels near!

Cherry sw - sorry you have to be here but this is a great place for support and information. I too was freaking out after diagnosis and reading about HER2+++. I sought out a 2nd opinion and decided to participate in a clinical trial using Herceptin, Perjeta and aromatase inhibitor (AI) for 5 years - I did not do chemo. I had excellent results: clear nodes, margins and pathology. I don't have side effects from HP, only the daily AI which are tolerable for the most part (dry skin, hair thinning, runny nose, body pain, fatigue). I agree with KB870 and Hapb, HER2+++ isn't the poor prognosis that it used to be thanks to new treatment options. None of us can know with 100% certainty that we won't have a recurrence so I choose faith, a healthy lifestyle, low stress and positivity to make my immune system strong and prevent those nasty cancer cells from regenerating.

Your sadness and anxiety are very normal and we've all been there. You will feel much better once you have a treatment plan. We're all fighters and you are too! Stay strong and take care

Cherry-sw, you are at the right place for good support and information. Seven months ago I started the same journey that you are now on. I hung a large sign on my refrigerator- PCR, NED, and NN - to remind me daily of my goals and because I am a bit superstitious.

pathologically complete response (PCR)

with no evidence of disease (NED)

then find your new normal (NN)

The anxiety can be overwhelming. There is no shame in taking an anti-depressant and seeking help as a triple positive diagnosis can be paralyzing. Once you have a treatment plan in place and are working through the steps there will be somewhat less uncertainty and that may help too.

Welcome to the group as difficult as it may be. This board was a lifeline to me through diagnosis, staging, chemo, and surgery and continues to be. Sending support and positive thoughts as you start your journey.

Cherry, I recommend checking out all the postings on the Stage 2 Sisters Club site if you haven't already. Over a matter of weeks, I read every single post starting with the very first one and I have seen how these ladies have come out as true victors since 2011(?) when they first started their bc journey. They also shared many helpful hints for getting through their treatment programs.

If I can go by their experience, you WILL run again, return to normal levels of energy, and enjoy many of the foods and drinks you currently enjoy while probably adding others to your diet.

My oncologist advises me to eat less beef because Americans eat way too much of that. However, I am still allowed 4-5 normal-sized hamburgers a week. I have been told to increase my consumption of fish and fowl (anything that swims or flies).

I am now four weeks past the end of 16 weeks of chemo. On Monday I had my first infusion of Herceptin only, and I have had a problem-free week, yay! When I asked the nurse what side effects I might expect from the Herceptin alone, she said "None" and that has proven true. Many of the ladies in the Stage 2 Sisters Club have been on Herceptin as part of their treatment, and none have reported major problems.

One nurse told me I am lucky to be triple-positive because there are specific treatments available for each of the three conditions. The antihormonal medication I will be put on long-term is Arimidex. Its chief side effect is loss of bone density. However, ruthbru in the Stage 2 Sisters Club has maintained strong bones over the years of her treatment because she eats a serving of prunes every day. A Florida researcher discovered the effectiveness of this practice, and ruthbru posted the link to the report on his study.

In short, the more you visit these breast cancer message boards, the more success stories you will read, and they will give you courage and resolve.

Sorry, ladies. Blame it on my chemo brain. I had to edit my previous post several times because I visit several different message boards at this breastcancer.org site and I was getting them all mixed up in my head.

Cherry,

Welcome to an unwanted journey. Sorry life finds you here. When you have time you should add the specifics of your cancer to your profile. Make sure you change the setting so we can see it.

I totally understand how you feel about no one understanding, that is what's nice about this site. We do. I have a lot of friends who tell me that this is "just a small blimp in my life" and not to worry. The first time I was told that I about slapped the person. After that I started telling them " your right, losing my hair, my taste, and my boobs is just a small blimp." Then i say "so is losing a friend" and just smile. Lol.

You find out who your real friends are very fast.

Try to stay positive, I know it is hard and there are days I sit in my bedroom and cry but remember "WE ARE WOMEN THAT WILL KICK ASS" we can do this together. Feel free to ask questions so you know what is coming at you. I found the more I knew the better i handled things. I don't sugar coat things either.

Hope today finds you feeling better

Cherry-SW. Sorry you had to join our club, but you have found a great group of supportive women, a place to ask questions, a place to rant with no judgements. I have similar diagnosis to you, started my journey back in April. I have 2 chemo infusions left, then on to next treatment. It hasn't been easy, but have managed pretty well. We are all here for you.

HapB, my eldest girl is 21, she is in university, but my youngest is just 11 and my heart breaks for her. She knows I am not feeling well, I cry often and I have withdrawn myself to the bedroom because when I see her and talk to her I just feel so sad and sorry for everything what happened. She is a daddy's girl and he keeps her busy but I cannot be around her as I used to because it breaks my heart. And I know that I say the same thing in every post and private mesage about how my heartdoes break but I do not have any other words how to express it, it does break and so many time a day that I lost the count. I will try to get some councelling on how to tell her what is going on, but she is so young and I just think of how she will feel that all other mommies are there and picking from school and laughing, being as usual meanwhile her mom is sick, fighting cancer and she is so small to understand it, she will be worried sick, it will leave an imprint for life, I hate that it will change her life like this. I just have to pull myself together and I cannot. I know people will say: well, it is what it is and she will understand but this is not what you wish for your child to go through something like this. I am sorry that I get so emotional, I hardly stand this pressure.

Sincerely,

Cherry

After my lab results, they put off my chemo on Wednesday 8/2 until my numbers come back up, also so that I can build up my strength.  I will go this Wednesday 8-9-17 to try again.  I really did need to get my second wind after #3 so, I will not complain.  I had an echo Friday (three months since my first) and hopefully and prayerfully everything will be good there too.  I am not the type of person to take naps pre-cancer but now I do, yesterday a 2 hour nap helped me so much and I still fell asleep at 9ish without any problem.  

Cherry, I am so sorry you too are having to go through this, I promise you that this is a place where you will gain a wealth of information and support.  I learned so much and have met MANY SURVIVORS, which gives me hope!  We as triple P's do survive now and have a fighting chance against this cancer.  I have days/weeks where I can't even come to breastcancer.org to look anymore because I am overwhelmed with it all but, where else can I go where people actually understand?  We all help each other through!  Promise me that you will not go to random sites about triple positive breast cancer........they give only horror stories and not hope.  Prayers to you.  ((hugs))

Bareclaws:  Round four watch out, here I come!

Melanie

Hapb thanks so much for the nutrition tips and smoothie recipe. I gave up dairy a year ago and I feel so much better.

Shelabela, I always smile when I read your posts! So true about the comments from people and finding out who your friends are. As I'm nearing the end of my treatments people have been saying, "won't it be nice to be done". Sure it will be nice to be done with INFUSIONS but they just don't understand we will never be done with this journey. Our bodies will never be the same and we must still deal with SEs from the AIs. We'll forever be hyper vigilant watching for recurrence BUT we are stronger and better for going through this. We have a deeper appreciation for life and our loved ones and we're grateful for all we can do. I too just smile at the comments and move along.

Cherry cw, you will find this community to be a source of strength and understanding in the days ahead. We pray, encourage, cry, get frustrated and fight for one another. I feel blessed to be part of this kinship and you will too! You might not feel strong now but you will become a cancer warrior too and that will be a wonderful example for you to set for your children.

Moodyblues- sending hugs and prayers that round 4 goes well.

Hugs and blessings to all 😊

Hi Fleur!

Check out the NCI guidelines:

https://www.cancer.gov/types/breast/hp/breast-treatment-pdq

Oncologists often follow these guidelines because insurance companies are more likely to pay for the prescribed treatments. Good luck with your surgery!

Thank you Deni and Cherry. 

Hapb Any recipe's in that book with DARK chocolate?  ?  Mmmm

Has anyone had popping in ears as a side effect?  I had round #3 which gave me a lot of problems (even had to miss #4 in order to get my numbers up).  It has been 4 weeks and 'just' in the last several days I have noticed my one ear has a popping sound inside.  It is like a dull pop, very similar to when you're in the mountains and your ears pop due to elevation drop or rise.  Happens multiple times a day.

PoseyGirl.  My sheet of SE's from doctor noted that one of the SE's from Herceptin is infection and flu-like symptoms.  It did say these occur in 10-29 percent of patients.

Hi Hapb, which isn't good...the swearing and the heart ones? Or just all in general...