TRIPLE POSITIVE GROUP
Comments
-
I think any tumor over .6cm calls for chemo. Special K will know.
0 -
My tumor was .8 cm. My surgeon told me the same as your surgeon did Annie60- lumpectomy, radiation and endocrine pills. However, when we got the pathology back and it showed that it was highly Her2 positive that changed the whole plan. I was devastated.
My MO ordered 6 rounds of TCHP for me. Because of severe side effects, my MO stopped the chemo after I completed 4 rounds, but I continued with the original plan of 6 Perjeta infusions. (The perjeta was unusual for someone with my smaller tumor and node negative status. I have often wondered what my MO wrote my insurance company to get them to agree to the six rounds of Perjeta. Yikes!)
At the time of my diagnosis in 2016, Cowgirl is correct - anything over .5 cm and the guidelines called for chemo and Herceptin. I don't think that has changed.
I'm guessing, Annie, the positive nodes were responsible for the AC-T protocol with Herceptin and Perjeta, However, you are correct that your Her2 positive diagnosis would have meant chemo and herceptin even without the positive nodes.
0 -
Paloma, It took awhile for my hair to regrow after TCHP. I finished mid Sept 2017 and had very little hair even at Christmas. I wore a wig or bandanna until April 2018 when it was finally full enough to look like a pixie cut. But it did all grow back
0 -
Had round 5 of 6 TCHP a week ago today. New side effect I noticed today - black spot on tongue. Anyone else have experience with this?
0 -
I do not have any experience with black spots—but a quick google search suggested this was not unusual with Chemo. Chemo is known for causing dry mouth and mouth sores—and black spots can result from either of these. I saw suggestions of brushing or flossing the spots—it may be a build-up of dry, dead tongue cells. And if you aren’t swishing with Biotene regularly, you may try that. Hopefully someone with first hand experience will respond
0 -
alicesneed - May be a fungal issue, which is common with chemo, and you may need nystatin mouthwash, which is rx. Let your oncologist know.
0 -
Thanks SpecialK & Musosgirl - MO said to call if it swells or bleeds otherwise she’ll check it out when I see her next week. So I guess not a big issue. Will keep swishing with Biotene and do some extra brushing. Seems to be something new each round...
0 -
I just wanted to say that I had 1.5mm of IDC...and I did taxol and herceptin...
0 -
Hi Everyone!,
I don’t come on here often but wanted to check in and say 👋. It has been over 8 years since my initial diagnosis. I am doing well and still taking Anastrozole ( ughh 😧..my achy joints) and will continue at least till year 10. I still see my onc. every 6 months for a check up. I still remember all the help, support and guidance that Lago, Special K and many others gave me. You ladies are the best!
0 -
bucky--hello and welcome back! I'm just curious why you're doing the extended course of Anastrozole. A lot of us just starting out are hoping to get by with five years.
0 -
bucky - hey you! Good to see you!
It has been documented now that extended Tamoxifen therapy for ER+ pre-menopausal women is beneficial. Once that had been looked at it prompted a look at extended aromatase inhibitor therapy for post-menopausal patients, based on the premise that AI therapy is statistically more effective than Tamoxifen. The benefit of extended AI therapy seems to be limited to local recurrence, but not distant based on study results - here is some linked info. One genomic test that may help with the decision to extend AI therapy is the Breast Cancer Index test - typically done after five years of anti-hormonals -which had a dual result - your risk of recurrence going forward at the time of the test, and the likelihood of benefit.
https://www.breastcancer.org/research-news/asco-recommends-extended-hormonal-tx-for-some
0 -
WC3 - congrats to you! My last one is in November. Cheers to our runny noses!
0 -
hey ladies, had my first chemo cycle yesterday. Feel pretty crappy, super tired, slightly nauseous, tight chest and metallic taste in my mouth. Any pointers? Thanks!
0 -
Hey Jkeet, sorry you’re going through this. Chemo, while not particularly fun, is manageable.
My tips: drink plenty of water, go for a walk or do some kind of intentional movement every day, rest, rinse your mouth frequently with a baking soda/salt water combo, eat small meals. Drink peppermint or chamomile tea for a tummy ache; a heating pad on the belly feels nice, too.
On your next round, be sure to suck on ice cubes during taxotere - it will prevent mouth sores.
Wishing you minimal side effects and the best of luck
0 -
Jkeet, just a couple of things which I did that helped me. Drink lots of water, at least 8 glasses a day if not more. Do this every day for the next year until you are out of treatment. If I can do it, I know you can do it. The other thing is to take the nausea drugs before you feel nauseous. You have to get ahead of it because if you don't, you won't be able to help as much.
Golly, I just realized that my first chemo was 10 years ago, almost to the day! Wow!!!
You will get through it, just take it 1 day at a time.
Blessings.
0 -
Jkeet, I’m sorry you are here but it is a good place to get info and understanding from people who have been through this.
I know everyone says drink fluids, I agree, but I will tell you I struggled with this. The taste was horrible no matter what I tried so I ended up going in to the infusion center to get fluids once or twice the following week after treatment. It helped me get through. Because my taste was so messed up and the texture of food was unappetizing, eating was also an issue. I had to force myself to eat something, but what helped is I just tried anything that sounded good. Mashed potatoes with milk gravy, Luigi’s real Italian ice (you get fluids with this also), lots of soups (with soft noodles or veggies). I also drank ensure to get protein and calories because I just couldn’t eat.
You need to manage your bowels, have on hand anti-diarrhea meds (Imodium) and laxatives (senna) if needed. I had a terrible time initially but once I figured it out was able to get it under control. If you do become constipated magnesium citrate works but use only as a last resort. You can get these at Walmart or Walgreens or any pharmacy.
I wish you the best, I will tell you I began this journey 1 year ago and the memory of chemo has faded. I made it through and had s PCR (pathological complete response) meaning no remaining cancer cells. Hugs.0 -
Do triple positive survive for longer than 10 years since initial diagnosis? I know each case is different but how does it look realistically
0 -
Jkeet, I am sorry you feel bad. I do agree with drinking plenty of water and eating what does taste good. A dietician told me not to eat favorite foods as an adversion to that food might happen. So for a while, it was ensure three times a day and yogurt in between. The suggestion of the heating pad was spot on. It seemed to really help cramps and abdominal pain. Positive thoughts sent your way.
0 -
neeli - yes, they definitely do. I am currently at nine years, and there are other TP folks on this site who have been here longer than I have. Linked below is an article with some survival stats, look for the section about treatment.
https://www.healthline.com/health/breast-cancer/her2-positive-survival-rates-statistics
Here are some links to threads regarding Her2+ survival from BCO.
https://community.breastcancer.org/forum/80/topics/825974?page=27#post_5434557
https://community.breastcancer.org/forum/80/topics/740304?page=29#idx_861
0 -
Thanks for the links SpecialK
0 -
jkeet, I am on day 11 of my first TCPH treatment. I had a bad time with diarrhea so my first recommendation would be to start Imodium immediately if you have any signs of it. Mine started day 4. If Imodium won’t solve the problem get an RX for something stronger. Drink LOTS of fluids. Today I am feeling almost back to normal so remember...this too shall pass. Good luck
0 -
jkeet - if the taste of water keeps you from drinking, try lemonade. I had to make my own since the Crystal Light tasted awful, too. Eat whatever taste good but try for protein. I had a hard time with that. I could do boiled eggs one week then throw up at the thought of them the next. Take it a day at a time.
0 -
I could only drink carbonated water that was more towards the bitter end like Pellegrino and citrus flavored carbonated water.
0 -
neeli, I'm on year 11, was diagnosed stage iv last year but I'm not going anywhere anytime soon!
0 -
Bigpeaches - Hifive to you!
0 -
For those who don't check in on Lumpie's breaking research thread, I found this really heartening:
0 -
^wow, only four distant recurrences in 6.5 years for women in that study (out of 410 women). Those are pretty good odds.
0 -
Thanks Ingerp.
0 -
I'm trying to do some reading and was wondering if there are any statistics that talk about recurrence with AIs (Arimidex (anastrozole), Aromasin (exemestane) and Femara (letrozole). I found this link: https://www.healio.com/hematology-oncology/breast-... I am not 100% sure that is a great link.
It says this: Five years of adjuvant endocrine therapy, or hormone therapy, can reduce recurrence risk by about 50% and mortality risk by 30%.
I see my MO's PA tomorrow and was going to ask her, but anyone know the recurrence rate for those drugs (is one better than the other)? I'm having some trouble with anastrozole; knee pain, leg cramps, some headaches. I take supplements, but added 4000 IU vitamin D, a fizzy magnesium drink along with Slow Mag and Hyland's Leg Cramps pills (I think they have quinine) and they help. I'm trying. I ordered the brand-name Arimidex from Eagle Pharmacy before it went up to $60, thankfully, and the leg cramps have subsided, thank God, for now. My next script will be the Teva generic from Walgreens to see if that is better. Your help is greatly appreciated, thank you.
Edited: I found this interesting, maybe this will help someone.
The Types of Aromatase Inhibitors
Currently, there are three AIs used, which include exemestane (Aromasin), letrozole (Femara) and anastrozole (Arimidex). AIs are given to post-menopausal women who have tumors that express estrogen receptors. The U.S. Food and Drug Administration (FDA) approved these drugs to be used in the following ways:Arimidex has been approved for women with early-stage breast cancer following surgery. This is a Type 2 "non-steroidal inhibitors," which stops the activity of aromatase, but not permanently.
Aromasin has been approved for women with early-stage breast cancer who have taken tamoxifen for two to three years. This is a Type 1 "steroidal inhibitor," which stops the activity of aromatase permanently.
Femara has been approved for women with early-stage breast cancer following surgery, and for women with early-stage breast cancer who have finished five years of tamoxifen. This is a Type 2 "non-steroidal inhibitors," which stops the activity of aromatase, but not permanently.
https://www.fredhutch.org/content/dam/public/Treatment-Suport/survivorship/Healthy-Links/Aromatase Inhibitors.pdf0 -
Ingerp, thanks for the link, that really is heartening! All had tumors under 3cm,wow
0
