TRIPLE POSITIVE GROUP
Comments
-
Shanary, definitley talk to your MO about stopping the Tamoxifen, you've made it this far, they will stop it at year 5 anyway (I think, it's been 10 years since my first go round but I think I was on it 5 years).
0 -
hi all,
Tamoxifen was not my friend. The leg, thigh, hamstring, foot cramps (sometimes both legs at once ) were excruciating and I lasted only 2 months and switched to Aromacin in Oct without any horrable side effects.
Compared all of them and did my research. The chart on this site helped the most.
Angelsgal
0 -
Hi ,
I just joined this group. I am half way thru TCH therapy....I have a question regarding Herceptin length of therapy.
My onc is considering 6 month course as opposed to 12 month based on recent findings that 6 months is sufficient.
Has anyone else also considered 6 months vs 12 months?
My hx: Dx triple positive Nov 2018 . Double MX Dec 2018. Node neg. Grade 1a. Mammary CA and Invasive Lobular CA
Thank you ladies!
0 -
JudyPhilly,
Welcome! Congrats on making it half-way through TCH chemo! I did the 12-month regimen, but I was Stage IIIA. Were you Grade IA or Stage IA?
0 -
Hi JudyPhilly, I was diagnosed with multi-focal triple + BC 7 mos ago. This is about the time the study was published on 6 vs 12 months of Herceptin. I did chemo first, TCHP, and after chemo am continuing on for 12 mos of HP. My OC said he felt there needed to be more follow-up before he would be comfortable going to 6 months. Also, as mentioned I had multi-focal BC but luckily had PCR after my neoadjunct treatment. ne node had scarring so assumption is that one node was involved. This also precluded him from cutting HP to 6 months. The HP isn’t a problem for me so I preferred the longer period.
Good luck in your journey.
0 -
rljes ... Special explained it better. Look for the manufacturer with the least inactive ingredients. Try that one.
JudyPhilly Welcome!
Vicky
0 -
Judy--I had the 6- vs. 12-months of Herceptin conversation with my MO and she too feels like there's not enough information yet to cut back on the time of treatment. I decided beforehand that I would absolutely not press to cut back on the full year if that's what she recommended. I figured it's only about eight more trips to the treatment center, well spaced out, and I know what a game-changer that drug was. Even if it turns out that in future everyone cuts back on length of treatment, for now I'm happy with the current 12-month schedule.
0 -
Judy - I am on the 12 month course as well. I have only one Herceptin left and have had no real problems with it. If I had bad rash or LVEF drop I probably would have quit at six months based on the study. Are you having problems with the Herceptin? I know of nobody here who cut down to the six month course unless they were having issues, but I could see doing it if you're having side effects or difficulty paying for the drug.
0 -
Judy, I am in Europe, so I don't know whether this is usefull for you, but I am on Herceptin for 12 months too. My stats are bellow. The one positive node was with micromet.
0 -
I'm stage IV so I can't really help with this one as I will be on Herceptin for as long as it's working. I can say, the first time I was on it for 12 months.
0 -
Hello everyone,
This is my first post. I completed Taxol last Monday and had my first Herceptin only infusion yesterday. I had an extremely bad reaction within minutes of the Herceptin starting. I almost lost consciousness, turned bright red, started itching all over, could barely speak, and started coughing. The nurses stopped the infusion and started pushing meds into my port to combat the reaction (steroids, Pepcid, Benadryl). Has anyone else had an extreme reaction like this to Herceptin? We weren't sure until yesterday how bad my reaction to Herceptin-only would, be because I had Taxol and all of the pre-meds with it in the past. I have nine more months of this every three weeks. I am determined to push through it, but Herceptin is not my friend. I start radiation in a few weeks and I'm not really looking forward to another source of fatigue. The combo of the Taxol and Herceptin knocked me out the last few months. The nurses keep telling me I've had one of the worst reactions to the meds that they've ever seen.
It's slightly less than ideal, to say the least.
0 -
Sweetie, how long was your drip? Sometimes they run it too fast (for certain people), If I had it to do again I would have a 90 minute drip. I'm so sorry this happened and it must be so frightening.
0 -
sweetie, I had a bad reaction when I was on TCHP. They did the same thing to me, stopped and gave me Pepcid and Benadryl. I finished TC in December but am on Herceptin and Perjeta now. They are giving me Pepcid and Benadryl before my infusion and haven’t had any issues. asked my OC if we could stop the premeds because we thought it was due to taxotere. I guess I will see what happens at my next infusion.
0 -
sweetie - I assume that when you finished weekly Taxol with Herceptin you moved to every three week dosing, is that correct? If so, you are receiving a much larger dose and it may be too much for you. You do have the option of continuing to receive weekly Herceptin at that smaller weekly dose for the remainder of the year, with the additional option of pre-meds. I have not seen many do that because of the frequency of visits required for weekly Herceptin most prefer to go every three weeks, but if you want to finish the course of treatment and can’t handle triple dosing it is something to consider.
0 -
Wow - Sweetie, that would be scary. As you have already read, you should have options - continue with the pre-meds, slow down the infusion or go back to weekly. Think through what would work best for you before your next appointment - maybe even talk to your PA before that. Thinking of you. Taco
0 -
Sweetie that totally sucks. I kept hearing that H only would be a non-event but I always feel off the rest of the day, and occasionally feel really bad. If I were in your situation I’d ask about staying on the every-three-week schedule with a slower drip and premeds. Weekly for the balance of a year seems really hard.
0 -
Sweetie so sorry to hear. I was allergic to taxol, so I hear you on how awful and scary that is when it happens. I would try 90 minutes next time with pre meds. If you still react, go back to weekly as special suggested. Hugs!
0 -
Thank you all for the feedback and the support. It was very scary. I'd say of all the things that have happened thus far, it was second only to hearing I had cancer for the first time.
I meet with my MO again on the 11th, right before my next scheduled infusion. The nurses told me it is likely that she will add the pre-meds to my infusion again and stick with them going forward. I noticed that I had many of the same unpleasant side effects today, two days out from Herceptin, that I was experiencing two days out from the full Pre-Meds/Taxol/Herceptin infusions. This seems to indicate that some of my most uncomfortable reactions (very red and swollen face, constant running nose and nose bleeds, skin sores, watery/blurry vision, nausea) are coming from the Herceptin and will be with me for the rest of the treatment. Not fun, but I can muddle through.
I wondered if slowing the infusion rate might help, so I will definitely ask the MO about that when I see her. I meet with the RO on Monday to finalize the plans for my RADS. I'm a bit nervous about those since I have had pretty strong reactions to everything thus far.
0 -
well...it started today...innocently. I took a huge vacation with my best friends in the world to celebrate my 40th birthday in 2015...and the pictures popped up on my memories facebook feed. It sent me down a rabbit hole of memories, and my anxiety kicked in, with flashbacks to my annual physical in March of that year, the first mammo, the biopsy. I hate being triggered. I thought I would be done with that by now. My mammo is the first week in April. This time of year ways causes flashbacks, like I am re-living what happened. Stupid cancer. Sigh....
0 -
tresjoli, I hear you. I understand your pain. Somedays, it’s just hard to deal with. Even when you triumph over the evil gremlin of triple+, some things get lost along the way. But, you being here has helped me and I am sure many others navigate this boat. I always appreciate your sunny, honest and matter of fact posts. I’m hoping the next day is brighter. Hugs
0 -
I have posted these words before from the song Tell Your Heart to Beat Again. I re-read them (and sing them) when I feel the lost, the sad memories, and where I was.
Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat againAnd then I move forward, one step at a time.
Best wishes.
Vicky
0 -
Tresjoli sending you lots of strength these next few weeks. You'll get through it. The awfulness will fade.
0 -
Hello Ladies,
My mom is triple positive and I would like to say something to you. It is actually really good to be triple positive. I've been researching and the doctor told us that now it is better for someone to be triple positive...you know why ? It is common sense and the stereotype which states that being 'HER2+ is not a good thing' will not fade away because Herceptin is still considered NEW, we still need decades for people to understand that being HER2+ is better than being HER2- . It is the same thing for being ER/PR+ , you get excited because there is something that can target your cancer which is tamoxifen etc... The same thing goes for being HER2+ because your cancer is targeted through many routes and not just one ( hormone therapy) . While those who are just er/pr + can target the cancer through only one route which is hormone therapy. You guys are more lucky than those who are HER2 negative , any thoughts?
0 -
you gals always know what to say to make a girl feel so much better. Suburbs, coach, ingerp...you guys rock!
0 -
I agree with Cowgirl13,
The longer the drip the less the SE's impact you. I had to use an inhaler to just walk from my desk at work to the parking lot when I first tried the Herceptin. My friend who used to be an Oncology nurse in that office told me that tip.
It is also interesting to see all the ads recently popping up about all the drugs for Metestatic BC that is Her2 - .
Angelsgal57
0 -
My RO told me HER2+ is a more aggressive tumor but also has better outcomes, specifically because of Herceptin. Lovemomy--it's the triple negatives I worry about.
0 -
lovemomy, when I broke the news to my family I said I have bad news and good news. First, bad news was I had triple positive breast cancer which is a very aggressive form that grows quickly. The good news is that I have triple positive breast cancer, because over the last 15+ years they have approved therapies to kill the cancer. But, of course, the issue is we all have cancer (or had cancer) and the treatments are not easy and can last for years.
I agree with you and inerp, i worry about those with triple negative and hope new therapies are approved soon that will help them out. I do know there are a number of trials going on that have promising results.
Take care and hope all is well with your mom
0 -
The Predict calculator indicates I have a 1% advantage if my cancer were triple negative. I'm not sure how accurate it is because on one hand, it uses data only as recent as 2004. On the other hand, it takes Herceptin in to account.
0 -
W3C - I tried Predict tool for comparison too... My case as TNBC has +3% better survival at 15 years...
0 -
My surgeon and MO said we were lucky to be Triple+. They said we have targets and they have silver bullets. If I had been triple-, it was more like a scatter gun with no patterns. Funny, after being told I needed surgery, chem and radiation, I wasn't feeling very lucky.
Annie
0
