TRIPLE POSITIVE GROUP
Comments
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Elaine, thank you so much for your reply. It helps knowing that I will be able to taste again. I am quite the foodie!!
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dawn, I lost my taste on taxol, my MO called it autosomal neuropathy. Good news is it does come back. My taste buds are totally back on track. Welcome
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Thank you Tresjoli2. It helps so much talking with people that have gone through the same experience. I'm so glad I found this website and community.
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Good news from recent MRI and mammogram. 3 years post surgery and all is well. Tamoxifen works well.
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Dawntastic, I agree that it's scary. I just finished my six rounds of TCHP, so I'm just ahead of you. You can do it.
I strongly recommend icing your mouth (and your feet and hands, if you can stand it and if your MO will approve it) for Taxotere. It sucks for an hour every three weeks, but if it prevents neuropathy and funky tastebuds, it's worth it! I did it, and I'm glad I did.
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Plus, Dawntastic, that cute lil hat is funtastic!!! Welcome, and I am so glad you found us so early in the game. The women on this thread in particular, are very knowledgable, helpful, funny, and warm. Sorry you are here, but glad you found this party!
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Hi all! I've been through chemo and surgery and am now doing radiation. I've forgotten the statistics on remission. What's the chance of triple positive return with in five years? Anybody know?
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Ohio- btwn reading medical journals and convos with my MO, I've read and heard stats that range from 20-50% chance of recurrence. Pathology after surgery can influence your odds. And newmonoclonal antibodies are making these numbers come down.
In response to discussion about icing/cold packs, you may want to be careful. These things work to protect your taste buds, nails, hair, etc. by preventing chemo from reaching the parts of your body that you're icing. It's a personal decision but I'd rather the chemo agents have unrestricted access...
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Thanks so much. I have a great support system. My husband comes from a very large family and his sisters have set me up with all kinds of hats. I started losing my hair after my first chemo treatment, and it was shoulder-length. I decided to shave it off rather than watching it fall out.
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Ohiotripleplus you need to talk to your oncologist about your specific risk. The highest risk for recurrence is in the first 2 years. After that it drops and continues to drop but never really to 0 unless 30 years have passed. I know my 10 year risk for recurrence bases on my diagnosis and age is/was 16% according to my oncologist. I'm now 5+ years out so I know my risk has actually gone down because it was higher in the first 5 years. Hope that makes sense.
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ohio - to add to lago's post, our recurrence stats differ based on our individual situations - larger tumor, positive nodes, genetics of the tumor - all can influence whether or not it may come back. There is no flat percentage that applies to all of us, but the advances in Her2+ treatment have definitely improved the odds for us.
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My tx included many "Scenic Detours" . I like winding road too! LOL. But I'd rather everyone be on the express track!
I still have my port. I got it in 2012. They couldn't get a good stick when I had my knee sx last year. They used my port and were happy to do it.they also used it for my cataract sx. I was debating getting t out but if they can't draw well, it makes no sense to get it out. Mine is basically just a flat scar. Doesn't stick out at all. Not to mention I have a pacemaker on y left so f i ones out the other lace mentioned options are not so good or me.
Much love to all.
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Hi everyone - I am looking for input on the chemo cocktail that you were recommended. I am just getting ready to start next week (see signature) but I had a surgical follow up and he questioned why the oncologist said that I need the 4 drugs. If you get Heceptin/Perjeta, is it always paired with the same 2 chemo drugs?
I have a 2nd oncology opinion for next week, so the date I have stated below is now most likely going to bump out a week. I just thought you all may have some personal experience that could help me.
From my lumpectomy, I had clear margins and nodes were negative. I am planning on the double Mx next year, but my brca was still pending. Do I have to be completely done with the year of herceptin to have surgery?
Ugh I am new with so many questions. Thanks!
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Sammy - there are exceptions, but Perjeta is currently FDA approved for early stage with Taxotere, Carboplatin and Herceptin, so you will see TCHP as the most common combo for this situation. You do not need to be done with Herceptin to have surgery - I had two reconstructive surgeries while still on it, and most who did BMX with expanders exchanged to implants while still on Herceptin.
Ask away with any questions - that is why we are here!
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i had TCH. It was just before Perjeta was approved. There seem to be 2 main protocols for Triple Positive.
One is Taxotere, Carboplatin, Herceptin and Perjeta.
The other protocol is Adriamiacin alone then Taxol and Herceptin.
Not sure if they give Perjeta with this one.
Both are pretty much the state of the art and comparable. We've decided on this board it depends if they trained on the West Coast it's usually Adriamiacin. And the East Coast it's TCHP. LOL the Midwest mixes it up.
Just ask which protocol your MO is inclined to use. Then go to the discussion board for that particular experience on the boards here. It helps.
Much luck and much love to you.
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thanks so much for that quick reply. I am still going to see the 2nd oncologist next week, which again means that I am going to probably start the week of 12/14 instead of 12/7. I guess I just want to be sure that they think the same thing. It sounds like for Her2+ that is pretty standard though.
Since we are all using that same combination, I have been reading your experiences on how your body handled the side effects. Sounds to me like days 5-10 were the worst each round, with diarrhea and bone pain from the Neulasta being bad. Oh, and I know I am going to lose my hair which at this point is the least of my worries
I guess I just want to know that I am not going to be stuck in my house for 18 weeks and that I can be somewhat functional for my kids. It helps so much knowing that you have experience that I can learn from.0 -
Also, how scared should I be about the heart side effects?
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I did 4 rounds of adrimyacin and cytoxan followed by 12 weekly Taxol and Herceptin - plus Perjeta was added in evey three weeks. Mine was done as neoadjuvant. However, my adjuvant treatment (after BMX) is Herceptin but not Perjeta because the insurance won't authorize adjuvant Perjeta.
Yes, you can do surgery on Herceptin. I've done 2 surgeries now and still do Herceptin every 3 weeks.
Good luck
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Sammy, I was concerned about the toxic effects of H and have a long standing family history of heart problems. My baseline and every 3 month echo have maintained at 65% so no dose adjustments were needed. The shortness of breath and fatigue throughout chemo had me thinking otherwise. I think you will be surprised how much you can get done when loaded with steroids, especially the day before and 2-3days post chemo. While everyone responds differently, my worst days 5-7. The taster does come back about 2 months and my chemo brain rears it's ugly head when I am tired or stressed. I did work during chemo, but looked up everything before answering and triple checked calculations. My energy is coming back.
Like rleepac said no P if adjuvant, insurance won't approve. Things change so you have to keep current with your info. Or let the MO deals with the details.
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hey everyone, it's been a while since I've been on here. Just wanted to share some wonderful news: had my biyearly mammogram and MRI and no signs of cancer! I am finally a 1 year cancer survivor as of November 10! It was a nice milestone to reach. I am just about finished with my first semester of graduate school and praying for normalcy
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Happy dance for you runningcello, it does feel good to have a routine and live.
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I'm having my last herceptin next Friday. I was treated at UCSF and they did 12 wks taxol/ herceptin then herceptin alone for the rest of the year. Scheduled to get my port out the week after that. I'. Small and basically it sticks out like doorknob and you can see the whole dang thing through my skin. I'm glad to have had it because 25 yrs ago I did 8 mid of chemo without it just in my arm but boy... I really can't stand it , can't sleep on that side without it hurting... And it just creeps me out since it's definitely not subtle.
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Sammy3
at first my wife's MO said that she was going to do ACT route.. but then due to her age he switched her to the TCH route. With that being said... I remember asking him all kinds of what ifs, what side effects etc etc. Her MO said we will deal with those as they come.. instead of instantly prescribing stuff he wanted to see how she reacted. She took her nausea pills the first few days after chemo --- took peptide AC for heartburn. The side effects she had were very manageable (ACNE -- MO gave a cream that cleared it right up -- Low white blood count - nuelasta shot (take Claritin and aleve the day of and after to help with the side effects --- mouth sores - he prescribed a mouth wash). Heart issues --- there will be scans of your heart before you start treatment and after a few of your treatments to make sure that nothing is happening to you heart...
What I am trying to say is -- try not to worry to much (easier said then done I know) and play it day by day and work closely with your MO -- they have lots of tricks to help you get through side effects.
Also as others have said about surgeries.. wife is on Herceptin treatments now.. she has her expander/implant exchange on Tuesday (Dec 8th) and there is no issues with still going through treatment.
Hang in there --- you will do great... one day at a time -- take on each challenge as they come not as they enter your mind
RUNNINGCELL: that is great news--- cant wait till my wife gets there and things will settle down
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Congratulations runningcello - that is wonderful news!!!!!
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Sammy3
I found that keeping active (powerwalking) really helped keep the side effects away. Do what you can but for most of us it's not as bad as what you see on TV. I actually had no nausea. Never used any of the nausea pills.
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Good morning, everyone. I recently completed surgery, am headed toward beginning my Herceptin and chemo treatments realitively soon, and searching the boards to find others with my stage Her2 positive cancer who are/were on the same regimen that is recommended for me and could share their experience
First, I have early stage 1A, triple positive IDC and am recovering from my BMX with TE placement surgery. I like my MO, who is well-respected and practices at a first-rate NCI-recommended hospital. My MO recommends the regimen combining Herceptin and Navelbine for me. If I'm correct, Navelbine seems to be a "lighter" chemo (i.e., no S/Es of hair loss or neuropathy), which MO said has been a traditional chemo for lung cancer and used very successfully with Stage IV breast cancer patients. Dana Farber conducted a single arm study with women who had similar small early stage HER2 positive tumors as I have, who did well on this regimen according to MO. I haven't seen anyone else posting on the boards with HER2 positive cancer at my stage who were on this regimen. Hormonal treatment will follow this treatment, as is usual for us triple positives.
Should I start a new thread or am I in the right place to post my questions about others like me on this regimen?
Thanks.
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Surgery went well on Monday. I'm sorry it took my a bit to get online... I had Facebook while in hospital and was able to post to a couple of you, but couldn't get to the BSO site on my phone. I was trying my best to follow doctors orders and rest (hard for me!) while in hospital. I was up and walking around Monday night after surgery, and I took the meds they gave me in hospital as they made me do it... However, it was fine and it counteracted and got ahead of any pain twinges that may have wanted to start.
On the mend and feeling really good! Only minor discomfort, very little pain...
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jersey - yay! Good for you!
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Keepsake, yes you belong on Triple Positive board, welcome. Other helpful boards for you would be a starting chemo December 2015 or January 2016. Everybody is going through the same SEs and worries you are at the same times. Even if your SEs are not the same it's just good to know people understand.
The same once you learn your chemo treatment. If it TCHP or ACT. There again people can help because they kinda know what you're dealing with.
You could also try your stage board. I believe there is a Stage one board. Sorry I can't post links.
All that said, sorry you had to come here, but welcome. We try to answer your questions. There are so many women on this board who have so much info!
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keepsake - I think you are correct that there don't seem to be many early stagers on Navelbine, most I have seen have done 12 weekly Taxol plus Herceptin for a similarly staged tumor. To gather some info you could post about Navelbine questions on this thread:
https://community.breastcancer.org/forum/8/topics/783594?page=106#post_4570348
It is populated with some stage IV ladies who potentially have more Navelbine experience, but possibly not with the Herceptin added. I think this regimen is new enough that you may not find others with similar stats to you posting yet. Wishing you the best - and you can always stay here too! Some of the side effects of chemo are similar regardless of the drug so the folks here can also help, and we all have Herceptin info.
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