TRIPLE POSITIVE GROUP

Ingerp

Just curious (/bored—I’m gettingT/H #2)—after we’re done with the T and it’s H only, do you get any pre-meds?

SpecialK

ingerp - I did not. During TCH I received Tylenol, Pepcid (for any stomach or esophageal irritation), Aloxi (anti-nausea), and Dexamethosone (steroid), but once I moved on to Herceptin only all of the pre-meds stopped. Toward the end of the year of H I started to have low grade headaches pretty often, and I took Tylenol myself for those, it is a common SE and disappeared once I was done.

Ingerp

Thanks, SpecialK. I'm just curious about the timing. I was whining over on the Weekly Taxol thread about how it's two hours between when I arrive at the infusion center and when I start getting the good stuff. #2 was an hour shorter than #1 (because of the 30- vs. 90-minute H drip), and I'm already wondering how quickly those H-only tri-weekly sessions might run.

TTW

HapB

Thanks for the predictor link very interesting. Looks very promising wo chemo. Will know more once meet with MO and set up appt for 2nd opinion. thanks for the resources, you guys are great on this forum. So very helpful and nice to share when others just don’t get it.....thanks

coachvicky

Ingerp

I took the Benadryl and Tylenol with Herceptin only.

Vicky

Lita19901

Hapb, just to mess with your mind, my MO at JH said that of women with our particular brand of BC - stage 1, grade 2, no nodal involvement,HER2 and hormone positive - only about 10% of us benefit from treatments. The catch, of course, is that currently there is no way to determine into which group we fall.

Lita19901

No, it means that the other 90 would have been just fine without treatment.

This isn’t advocating for non-treatment - we can only go with what we currently know at this point in time.

PhoenixCruiser

Once I was done with Taxol, my visits were reduced to one hour - 30 minutes to prep my port and wait on the blood work results and then the H infusion takes 30 minutes.


If I have to see the doctor this can add an hour as she is never on time - so frustrating.


Your first two H only might be longer, not sure why the first and second are given slowly.

moodyblues

BJI Congrat's, I can hear the echo of that bell here!

Tresjoli2

TTW this thread may help you. Filled with women who have between 1mm and 6mm of Her2 positive idc...

https://community.breastcancer.org/forum/80/topics...

Ingerp

Thanks Vicky and Phoenix. Vicky—were you getting IV Benadryl? And you got Tylenol? I get a Zofran/Decadron IV, and then a Benadryl and Pepcid push (heard from the nurse yesterday that they normally do an infusion for those but the small infusion bags are made in Puerto Rico and since the hurricane there's a huge shortage of them). Phoenix I got the H over 90 minutes for #1 but over 30 minutes starting with #2 (yesterday). I did fine with both.

coachvicky

Ingrep

Both were pills. Took 2 each and waited 20 minutes before Herceptin IV.

Later. I started taking the Benadryl and Tylenol as soon as I left my MO appointment. At my center there was a scheduling stop to make before infusion. Made the wait before infusion to about 5 minutes vs the entire 20 minutes sitting in one spot.

In hindsight, I wish I had slowed the Herceptin as TonLee and others have recommended.

Vicky

SpecialK

ingerp - I got IV Benadryl, pill Tylenol, IV Dexamethasone, and IV Aloxi. I was given the Tylenol before the IV pre-meds were started, which took about 30 minutes to infuse as they were given with fluids. Then I received TCH in order with 45-60 mins for the T and C, 90 mins for the H - this held true throughout all 6 infusions, and it made for a long day because I had a CBC, vitals, port access, and a visit with my oncologist before each infusion.

hap - it is not that the anti-hormonal, or the chemo and targeted therapy for that matter, don't work for people at your stage - it is that it is not needed. The problem is that nobody knows who falls into the small percentages that do need it. What PREDICT shows is that for about 90% of your stage surgery alone is enough, the rest is insurance. However, no calculator or doctor can tell you whether you will be one for whom surgery is not enough, so the meds are prescribed for all.

Ingerp

Thanks Vicky and SpecialK. Believe me I'm aware that you lovely ladies getting the heavier duty chemo drugs are going through a much worse ordeal, SE-, time-, and who-knows-what-else-wise (probably pain-wise too--AFAIK none of us H/T only gals get pain meds before tx). Being in and out in 3.5 hours in a comfortable place that gives me free lunches and massages is not bad!!

SpecialK

ingerp - the Tylenol is not given for pain, it is given to help stave off an allergic reaction, as is the Benadryl. This is the same protocol given prior to a blood transfusion, it is common for hives and an increase in body temp to occur.

LaughingGull

Ingerp: I only had my first H/P and for pre-meds I had Benadryl in pill, wait 30 mins. No Tylenol. Fluids, then Herceptin then Perjeta. Then wait for 30 mins in observation. All in all, counting the prior visit with the MO, it was a half-day thing.

coachvicky

You got FREE lunch? Really?

Vicky

ElaineTherese

Vicky,

Some infusion centers around here have free lunches. Mine generally provided snacks (e.g., peanut butter and crackers) and various drinks. Mine did have some awesome soup, though. I loved it!

BJI

My infusion center always had snacks, yogurt, string cheese available, You could always order lunch (sandwich, chips, cookie) for free.

Ingerp

SpecialK I did not know that about Tylenol!

Laughing--roger that.

Vicky--yup. They told me ahead of time that you can order a lunch if you're going to be there over lunch time. It's hospital food but mighty tasty when you have some steroids on board! Charlottesville has two hospitals--the big UVA teaching hospital and Martha Jefferson, which is a private hospital. The conventional wisdom around here is that if you have some weird tropical disease or something you go to UVA, but for regular stuff, Martha Jeff is a little cozier. My tx team is at Martha Jeff.

coachvicky

The people serving the snacks were very nice but the snacks were high carb cookies, muffins, soft drinks, juices and such. I usually brought my own snacks and took the coffee and ice offered. It was free but no lunch or great soup.

I took Deviled Eggs once but as soon as I opened the container, I immediately closed it. What was I thinking? That smell could have easilystarted a throw-up contest around prone-to-be-nauseated chemo patients.

There was a mini restaurant on site. It was closed Mondays and that was my infusion day.

The things I learn from you ladies!

Vicky

Jstarling

Before infusion I am given 2 zofran tabs and offered Tylenol. When they hook me up they first give me an iv Benadryl then the Herceptin which I ask for 45 mins and then then the T and C. No snacks offered! We bring our sandwiches and water bottles. Very, very nice nursing staff. I have #4 on 6/6

TTW

thank you for passing on the board....you are right it reflects my dilemma perfectly, 3cm no lymph and clean margins, this blasted HER2+ is the only hiccup from walking away with no chemo. I just ready the MD Anderson algorithm for Invasive breast cancer which includes smaller than 5cm recommendations....approved in feb 2018. Was planning on doing a 2nd opinion at md anderson ......also looks like rads first due to lumpectomy then if decide chemo after...is there a time frame that chemo doesn’t work? If don’t have it for 3-4 months post surgery

TriplePHtown

BJI - Congrats on finishing your year of treatment. What an exciting time with your granddaughters and your new grandchild! Have a fun, relaxing summer and a wonderful life

Tresjoli2

ttw I had surgery, then chemo, then 7 weeks of rads..

Jjewel

I'm doing my Herceptin/Perjetta infusions after chemo and surgery. They always provide snacks and lunch too! Sandwiches, chips and cookies or nutritional bars. I ate chicken salad, passed on the cookies but I must confess, I ate the Cheetos!!! Every time. My husband laughed every time too. We eat pretty healthy so the Cheetos were my way of rebelling! ☺️

After this is behind me, I'll never look at a Cheeto the same way. It will always remind me of the Cancer Center, lol

Jjewel

They don't give me any pre meds now, just H& P. I do fine.......so far. 🙄

Jjewel

I actually asked them why they had no healthy options. They said it had to be processed foods that would keep. The sandwiches are brought in by the hospital next door. I asked for fruit and they said no. I thought I should start bringing a basket myself to share but I'm not sure they'd let me. I also wondered why during chemo they gave me a large binder with info on the drugs, side effects etc. The material encouraged eating, all kinds of puddings, ice cream, milk shakes, cakes and cookies. The only fruit mentioned was banana for diarrhea. I asked to talk to a nutritionist because I've always tried to be healthy (and I am other than this episode with BC). The nurse said they didn't have one anymore because not much need for one? I asked about Keto, vegetables, fruits and the healthy way I was eating and the only response I got was , "it can't hurt!" I'm confused why medical professionals seem ambivalent about it.

Jjewel

but I did eat their cheetos and enjoyed them. 😉

Anonymous

Blownaway-did you take cymbalta while you were on Tamoxifen? I ask because there is a significant drug interaction between them. When I started tamoxifen, I had to switch over wean off Cymbalta. I took effexor for awhile to help with hot flashes. Now that I am on arimidex, i had terrible joint pain, so they put me back on cymbalta, which makes a huge difference.

ingerp-I had weekly taxol. I got mine on Wednesdays morning. I would be high on steroids all day Wednesday. Crash mid-morning on thursday and start to come back on Friday. Then would be pretty good for the weekend to go out. I loved your graduation picture. 6 years ago, we flew out for my daughter's graduation in California. I went a day ahead of everyone. I had herceptin in the morning, hopped on a plane shot up on steroids, was up half the night with my daughter in a hotel room, and passed out under a beach umbrella listening to the ocean on Thursday until everyone got arrived Thursday night. By Saturday, I was good to go for graduation.

On herceptin length-it is interesting to read all the studies. When I started, (7 years agoish) my NIH trained oncologist said who knows whether a year is best, or if chemo is even needed with it. It was all too new and there just wasn't enough time involved in studies to know what was best yet. Until then...it was one year and chemo mix.

My lvef dropped to around 55 and leveled there. Around the last one, it had dropped to a smidge below 50, but they deemed it was ok to finish out. I was a little short of breath, but not terrible. i was also told that exercise was good, but it wouldn't affect my lvef.

Food...I always took my snacks with me, including my green drink which was one of the few things that tasted good. After about a month of my weekly taxol, one older nurse asked me what was in it. I told her raw spinach, some cucumber, apple, etc. She almost had a coronary giving me lecture about the fact I should be on the neutropenic diet. Hmmmm....missed that somewhere. Said I shouldn't be eating anything raw. Double Hmmm....i didn't mention the salads and everything else I had been eating as hot food tasted terrible. Then the oncologist and another nurse came through. both said my counts were good and they had been to seminars that dismissed a lot of that, but to make sure I thoroughly washed everything. I did give up salads in restaurants.

To all of you taking Prolia-last year I discovered a co-pay program that I didn't know about. It is huge. Covers $1500 a year, about the cost of the two doses. My new oncologist likes to keep her people that are on Arimidex on prolia, but she is going to evaluate after I have a bone density test on Tuesday. Mine had gone back two normal two years ago. Here is something else I learned from her. If you are on Arimidex, you can get a bone density test once a year. Maybe mine never warranted that so no one ever said anything, but just passing on.

And finally....name brand Arimidex. When I went back on Arimidex (kicking and screaming), I decided I was going to do the Arimidex brand plan through the site, rather than the generic. It is probably all in my head but, I have far fewer side effects. Hot flashes seem to be a smidge worse, but doable. Joint pain about the same, but the lethargy and brain fog isn't there. It is hugely better.

My last two weeks have been stressful. My almost 91 year old mother went to the emergency room with severe abdominal pain. After ultrasound and scans, they found some kind of mass in her gall bladder. Decided they were going to do an ERCP stent. In the meantime, her bp is tanking, and her PCP's office calls me to tell me her a1c from her appointment a few days before that was 13.1. It was over 400 when she was admitted also. She was touch and go with the bp, but they got it back up, did the procedure, all good. She bounces back. She is in rehab and I am sure will go home next week. But they want her to take insulin shots. she told them she wasn't really interested in that lol, nor was she interested in being trained to give herself the shot. The woman is EXHAUSTING. Also told them she had no interest in going into assisted living and was going back to her apartment. (largely because she is the pretty much the sole means of support to my off and on drug addict brother, who over the course of 20 years, she gave all her money too). She is well aware that if she goes into assisted living, he is likely on the street as there is no cushion to provide for him anymore.

So...I have to figure that out now, knowing full well she would be far better off in assisted living, but also knowing she is pretty with it yet and if I force it, she will throw a massive fit and probably have nothing to do with me.

In the midst of all this, we don't know if her mass is cancerous or not. They did not biopsy it because they put in a temporary stent and wanted her under a minimum amount of time due to the bp issues. Her heart function is only 15%, which it has been for awhile, so the gastric guy doesn't feel she is a good candidate for surgery. On normal people I would agree, but her side has long life, even after things that should kill them haven't. I told him if it was something contained that they could do laporoscopically when they put in the permanent stent, then that might be one thing. if it was something more, than no I agree with no major surgery. But her brother had a huge carotid surgery at 89 that they told him to say his goodbyes before surgery lol. He is still here at 93, along with his wife (married 70 years!!!). Her sisters passed away at 94, one after having a bad heart, had come back from a broken pelvis, had bladder cancer probably due to the actonel drug, and had to have a pacemaker put in because the chemo drug they were sloshing around her bladder, messed with her blood sugars (diabetic) and then a heart arythmia developed. She also had breast cancer, early, before all this happened and wouldn't do a lumpectomy because they didn't think her heart could handle the surgery. They are a feisty bunch.

Oh well, it is always something!

Hope you all have a wonderful memorial weekend. I plan to be out making some memories for everyone to remember someday!