TRIPLE POSITIVE GROUP
Comments
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Boogirl - at the time of my diagnosis, my HER2 hadn't been discovered. I had lumpectomy and brachytherapy before the final path report came back. TH is generally considered "chemo lite" but doesn't make it a walk in the park but usually easier than some other regimens. My center didn't even talk about cold capping so I can't comment on that. I had painful neuropathy with the taxol and stopped after 8 treatments with MO's support. MO said if I had had lymph node involvement, she might have advocated strongly for continuing even with the pain. I had no SE's from the herceptin. Although having treatments for a year is a pain in the ---, our prognosis is quite good with the development of herceptin. I thought of it as a "slog" rather than a "walk". I'm having hot flashes and hair thinning for the AI's but generally I would say I feel as well or better than I did before BC. Even a few pounds lighter thanks to increased exercise.
Try to enjoy your holidays everyone!
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Thank you SpecialK. I talked to my oncologist and surgeon and will do double mastectomy. My oncologist mentioned TDM1 which just had data released in San Antonio conference, if the surgery shows residue, he might put me on that.
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Thank you coachvicky for the link, I will read through these
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Hi everyone, happy holidays!
I posted this question under the surgery topic, but I think since this is the triple positive group, more people are doing surgery after chemo, might get more answer here also.
Just want to ask, has anyone had a long wait for the surgery after neoadjuvant chemo?
I finished my last chemo TCHP on 11/24, but because my blood clot (already cleared according to my recent ultrasound), my surgeon insists that I have to finish the 90 day blood thinner treatment which will be done by 1/24. That will make the gap between last chemo to surgery bigger than 8 weeks.
My oncologist started to put me on the maintenance Herceptin + Perjeta due to the delay, but not on tamoxifen yet. I am really worried that I might be unprotected for this period
The MRI did before chemo shows3 lumps, one was also seen by previous mammogram and did biopsy, the other 2 are new. Did another MRI after chemo, the one had the biopsy looks all clear now, the other 2 one shrink from 2.8 to 0.8cm, another one didn’t change much, stays 1.9cm
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hongh - was your MO not going to have you on H&P during this time anyway? It is usually not contraindicated for surgery, but Tamoxifen is usually discontinued due to the clot risk. Chemo will continue to provide some protection as it doesn't totally leave your system immediately. If it makes you feel any better, I had adjuvant chemo but didn't start for 14 weeks from surgery due to surgical complications.
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Hi SpecialK, my oncologist is giving me Herceptin and perjeta now every 3 weeks as a protection, he also said if the surgery is going to be more than 8 weeks away, he might have to put me on tamoxifen. Yeh, I read online that tamoxifen might cause clot too, so I am not sure when are they going to start that. But I don’t have a surgery date yet.
Wow, you waited 14 weeks, that will drive me crazy. Noticed it’s already been 7 years, that’s great
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I had my surgery 6 weeks after my last chemotherapy with one herceptin and perjeta infusion inbetween.
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Hongh - I had 5 surgeries during that 14 weeks, so I was distracted by that, lol! I was getting a bit nervous though as I was node positive, so I was ready to get the ball rolling with chemo.
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wc3- I think 6 weeks is standard, I didn’t know they also give Herceptin perjeta during that wait. I had mine last week
SpecialK- 5 surgeries, 😨
Good news, I just got a note from my Dr, they are trying to move the surgery date a big earlier, so that I can be fit intothe 8 week range. That will eliminate the need for tamoxifen.
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My surgery is scheduled for 6 1/2 weeks and my H & P infusions continued without stopping after my chemo was complete. I will have two H&P dosages prior to my surgery.
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hongh - that was just the ones between BMX and chemo, lol! I have had reconstruction issues and a total of 17 surgeries, but this is definitely not the norm - I don't usually say it out loud because it scares the pants off people. I did not do this to improve aesthetics, I had healing issues. Even though this was my experience, I would make the same choices all over again. I was unlucky in some ways, but I really do count myself among the fortunate! Glad that you got a move-up, I hope it will help ease your mind!
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Well, Ladies, we live to see another Christmas.
This is my third Christmas since diagnosis.
I call that great.
Vicky
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congrats coachvicky and everyone, each day is an accomplishment. For us newbies you all are inspiring us to continue on.
Hope all enjoy there holidays.
💕 🤗
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Yes Coach Vicky, it is great! Merry Christmas to all of us. Thank you all for the encouragement, wisdom and sisterhood this site provides. I started chemo Christmas week last year, I’m thankful for the progress I’ve made!!! My hair has grown to a short ‘style’ that looks intentional! I had my last Herceptin/Perjeta last week. I’m looking forward to a new year!!! To all who have just started, be encouraged by others progress, be gentle with your body and know this time next year, you will emerge better & stronger in many ways. I myself think the year has helped me to be a better person.
We are at the lake cabin in Minnesota, my favorite place on earth. Some grandchildren, cards and crafts!!! Who could ask for anything more❤️
OK, the food is good too!!!
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Merry Christmas! Wednesday will complete 12/12 Taxol/Herceptin. Then DMX. MedOnc excited about TDM-1 Kadcyla which FDA approves for those of us with Her2+ and any residual anything after surgery, this January/February. Apparently that Kadcyla really nails the cancer. Good news!
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Merry Christmas to all and thanks to everyone in this group! I'll start Taxol/Herceptin post holidays once recovered from surgery now that we know it's HER2+, and this Triple+++ group has made me feel much more confident in the path ahead and prepared for it all post all the negative surprises.
I hope everyone has a wonderful holiday season!
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There is much to celebrate! Congrats to those finishing! To those starting - we are here for you! You can do this!
Happy Holidays to all, in whatever way you celebrate!
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And happy holidays from us as well!
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I hope everyone had a wonderful Holiday with family and friends. I spent mine recovering from another Lipo and fat grafting. So wrapped in spandex and sitting. Lol.
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Tresjoli and anyone else with insight to share. I was 44 at diagnosis and 47 now. Haven’t had a period since chemo. Two weeks before chemo, had one ovary removed. I think I’m in menopause. Did chemo put you in menopause? I am taking Tamoxifen, but I have to admit I don’t take it regularly. Every other day or so because my vagina is fried. I keep hoping the lower dose will bring back some life
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Boogirl,
I did Taxol and Herceptin and iced both my hands and feet. I bought gel gloves and booties that we kept in a cooler with dry ice. I did not cold cap. I wore a knit hat and snuggled in an electric blanket. The booties and gloves worked! I felt some pain and tingling during the last few rounds ofTaxol, but it all went away and I have no neuropathy.
Bird
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Bird-of-light, I didn't have a period for two years after I finished Chemo the first time, then it came back with a vengance.
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bigpeaches,
May I ask how you discoveredthe Mets?
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I started having terrible pain in my back, at the same time my husband was having it too (weird I know) We both were diagnosed with a slipped disc and put on steroids, he got better, I got worse, to the point that I could no longer walk. I woke up one morning and couldn't move my right leg and finally they did an MRI and found a very large tumor on my spine that wasn't picked up on X-Ray. After that it was a PET scan and I had mets from my skull down to the tops of my thighs.
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Bird-of-light ... Please let your MO know how you are taking the Tamoxifen. Mine would not approve Arimidex every other day.
As for the frying ... there is forum called "I want my MOJO back." I bet you can find some help there. I did.
Vicky
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Hi Everyone, Its been quite a long time since I've been on line. I'm so glad coachvicky & SpecialK are still going strong giving advice. Thank you!
I am about finished with Herceptin, had to skip a few sessions due to Hospitalization for Sepsis 3 times in the last few months. (Sepsis is terrifying) My oncologist said it had nothing to do with my cancer - I'm not so sure about that. Plus Heart Eco post-phoned treatments a few times.Anyway - Question please : He wants me to take "The Herceptin Pill = Neratinib" Anybody take this or know anything about it?
Plus- He (Oncologist) finally brought up the issue of Hormone Therapy (He thought I was already on it ) He wants me to start Arimidex. Besides diarrhea, what other side effects? (I'm 60 - hysterectomy) Any thoughts? I have an appointment with the pharmacist doctor next week to discuss and wanted to have some real life situations to bring to the table.Thanks! Wish you all a Happy New Year. Rj
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Bigpeaches, I'm sorry. That soundsvery stressful. Things are going well with your treatment?
Coach, you give good advice. I'm afraid he will tell me I'm a fool for not taking it everyday. It is hard. Thanks for caring
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hi all! Young and Scared are you on ovarian suppression? I had terrible joint pain and foot/ankle pain. My MO told me it was not my meds. But then my primary told me that ovarian suppression can cause these symptoms.
Bird I am not in menopause, even though I havent had a period since July of 2015. My FSH and LH indicate not menopausal. Which I was bummed about actually. Makes contraception decisions really complicated. There are lots of options to help with vaginal atrophy. Talk to your MO about your side effects.
Hugs to all the newbies and yeah to hapa and jaboo for finishing up! Whoop whoop!
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I did herceptin - finished almost a year ago so can't comment on the alternatives. I had no SE's from it and my center is very close so it wasn't a big deal. I certainly can see where medication might be preferable for those who have hectic work schedules or have to travel a long way to get the infusion.
Some form of hormone suppressor is standard for Hormone positive receptor cancer. My MO started me about 6 weeks after I finished taxol. Usually it's taxomoxifin if you are pre-menopausal and AI's if you aren't but I have read about the reverse for some women for various reasons. Even though I am 72 and had a total hysterectomy 37 years ago, my MO said I could try the tax if I continued to unhappy with the AI's.
Before you give up on AI's, try another one - or another manufacturer. While my hair is thinning with Femora, the joint pain and headaches are much better than on arimedix. Hot flashes are getting better too so I can start wearing my wigs. I didn't have diaherra with one. Most of us have to watch our weight with any of them.
I am concerned, rijes, that your MO didn't know whether you were taking an AI. He/she should be the one to prescribe it.
I know it's winter but I am absolutely convinced that regular exercise helps me both physically and mentally. I know that many find that the joint pain is better with fewer carbs too. I personally haven't done as well with diet changes, but have actually managed to lose a few pounds with the increased activity.
It's always discouraging, BigPeaches, to hear that someone who has followed the protocols has mets. I'll keep you in my thoughts and hope the treatment gives you some relief.
If you are new, stay close. This is scary but is usually manageable. The ladies here have lots of tips - no question is out of line. Those of us who are TP have a long haul but a much better prognosis than before herceptin.
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