TRIPLE POSITIVE GROUP
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I have to second what Suburbs has written! Half through AC I discovered that my nausea was often (for the most part) caused by acid reflux. I bought some OTC "candies" against acid reflux and had instant relief! I took them several times a day for a few days and it really helped.
ComeOn, I hear you about your fears concerning anti-hormone therapy... I'm concerned about this too - bone health, muscle issues etc. I am getting ovarian supression from the beginning of chemo, but I got the feeling I'm in minority here.. most people get it after chemo. I don't know exactly why I got it right from the start, but I didn't protest. My estr. was 100%, I don't remember prog. , but it was very high too.
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Ladies worried about hormonals....
I've been on Zoladex (like Lupron but monthly) and Aromasin since February 2015. Definitely ask for a dexa scan before starting your pills so that you have a baseline re: bone density. I was borderline osteopenic in 2015, and after I started Aromasin, I now have full-blown osteoporosis. To deal with osteoporosis, I am now on Prolia.
I lost weight during chemo, but have gained it all back plus more since I've been on Aromasin. I am currently working on losing that weight through diet and exercise. It's been a challenge. I have seriously cut back on my eating, and I've added to my exercise routine.
Re: performance during exercise, I have actually gotten stronger and faster (bicycling, swimming), so that hasn't been a problem. Hope it's the same for you guys as well!
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I was diagnosed on August 7th and had lumpectomy on my right breast on 8/23. I just had a telephone consult with my doctor and she told me my 3 chemo options and wants me to research and decide during our appointment on 9/13.
My histologic grade is intermediate (score 6 of 9), tubule formation 3 of 3, nuclear grade, 2 of 3, and mitotic rate 1 of 3. I'm triple positive (ER+ PR+ and HER2 +), my margins were clear and 0/4 nodes, tumor size 1.5x1x0.8
Before my conversations with my oncologist today, I had read through the boards and thought TCH would be the standard treatment. I also met with my cancer naturopath (she is associated with the cancer center) and she had thought it would be TCH and talked me through supplements and advice for this.
And TCH is one of my options, but my oncologist said it would be her last choice because she said my cancer is slow growing (I think, she was talking fast and it was hard to understand) and that TCH would definitely give me neuropathy. I guess I'm not sure how she knows it is slow growing? The histologic grade was intermediate, but at least my margins were clear. Is that how?
The other 2 choices are AC followed by paclitaxel (taxol) and herceptin OR Paclitaxel + herceptin
She recommends the Paclitaxel + herceptin because she said it would be less likely to cause neuropathy, but reading through the taxol board, it seems many people are still getting neuropathy.
Also, of course I don't want chemo side effects, but I also really want to survive cancer free. My oncologist said I will also get radiation after chemo and then hormone targeted therapy for 10 years since I am ER/PR+. Does anyone have any data or statistics on survival rates for triple positives who do the paclitaxel (taxol) + herceptin and followed by hormone therapy?
Is anyone else triple positive and getting taxol+herceptin followed by hormone therapy?
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Elaine, thanks for the encouraging words re: exercise efficiency. That makes me feel better! Good point on a baseline scan, too.
What is everyone’s HER2 percentage? Mine is **99%** and my breast surgeon mentioned never seeing one that high. Or rarely, anyway.
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comeon - I wouldn't assume that anti-hormonals while on chemo are common - deni was part of a trial that combined both, but she had no chemo, the anti-hormonals were combind with targeted therapy. Coachvicky started anti-hormonal while on chemo, but in my 8 years here she is the only one I have seen do that. The vast majority of triple positives start anti-hormonal treatment after chemo is through but while still on targeted therapy. If rads are needed some start before rads, others start after rads are completed. Most oncologists allow a small break between changes in therapy to help suss out which side effects are attributed to what.
carotomp - you fall squarely into the eligibility for Taxol (paclitaxel) and Herceptin, TCH might be overkill for you. I am not convinced that TCH is associated with a greater propensity toward neuropathy than Taxol, even though it is a stronger drug, but any time you use a multi-drug chemo regimen the side effects have potential to be more severe. using Taxol s a single agent regimen is generally better tolerated. Here is the ATP study and follow-up for stage 1 Her2+ patients.
https://www.ncbi.nlm.nih.gov/pubmed/25564897
https://meetinglibrary.asco.org/record/145548/abstract
I also wanted to add this link to chemotherapy side effect tracking sheets from the American Cancer Society. I found these helpful for keeping trach of side effects and brought them to my appointments with my oncologist before the next infusion so we could discuss.
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SpecialK--thank you so much for this information and links. It is very overwhelming to have to come up to speed on all of this quickly enough to make a decision, so your help is very appreciated!
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carotomp - I am very similar to you. I had 2 surgeries (didn't get clean margins the first time). I just started Taxol and Herceptin last week (treatment #1). I will have a total of #12 Taxol treatments and Herceptin every 3 weeks for a year. After Taxol I will do radiation and hormone therapy (don't know what that will be yet). I chose the Taxol because I figured it would be a little easier for me to handle. I did not have to do the AC chemo first. Don't know if that helps you or not. When discussing with my MO, she did say that TH and the TCH were very similar in attacking the cancer cells. (I can't remember what percentage she told me). There aren't any studies comparing the TCH and the TH regimens side by side so nothing to really compare them. Best of luck to you. Welcome to the group (sad that you are here though).
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Hi ladies. Welcome Comeon and Princess. I finished TCH last month and begin radiation this week. I have not yet begun hormone blockers even though I am also 99%ERand 90%PR. I also had my Herceptin suspended after 4TCH because of flow rate but it came back enough to continue and I had Herceptin 7 the other day. So things do smooth out in time. I am trying to accept and go with the flow. It has been a long year, but I have become increasingly optimistic
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Carotomp - that would be me. Just Taxol and herceptin. I had a 6 week break between the last taxol and the AI's. I originally took arimezole (not spelled right) but am now taking letrozole. I also started brachytherapy a week after surgery. So rads were done before I started chemo. Special K is the expert here but it's been my impression that TH is much easier on most of us than other regimes.
Saying that, I did quit the taxol with my MO's support after 8 infusions because my neuropathy was so painful. She did say that if I had any lymph node involvement she wouldn't have been as supportive of stopping. I had no trouble with herceptin alone. Heart involvement is a possible side effect however and you should be getting a baseline echo and then one every 3 months.
How great to have a homeopathic person on your team! I feel overwhelmed with all the supplements I hear people taking and could definitely use more help in sorting out what I really need.
This is a scary time for you but it sounds as if you have a great team who will listen to you about your needs and concerns. You will also need to decide if you want to have a port. I highly recommend it but I have always been a hard stick. I was superstitious enough to think I would keep it in awhile but MO was so positive that I wouldn't need it again had it out after my one year mammogram.
Stay close and keep asking questions here and of your team.
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Question for the group: Does anyone have any natural products that can be used for probiotics for gut health and immune boosting? I know eating yogurt is good for probiotics but am looking for anything else that anyone has used or would recommend? Thank you!
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Rosee, I think veggies and fruit are also very, very important for gut health, since fibre acts a living ground for the gut fauna... fibre is PREbiotic. yoghurt and kefir are good too, just maybe not the full fat versions, as I have learnt here in these forums.. well, but I love it, so while in chemo, I don't cut down. after chemo maybe
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Thank you JaBoo. I'll try my best to incorporate more fruits and veggies into my diet. and I do like the greek yogurt and that seems to be good as well.
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Rosee - if you want to keep eating greek yogurt but want to minimize hormones, go with organic and/or fat free. I used goodbelly probiotic shots during chemo and after surgery while I was on antibiotics. I can't say for sure that they did anything, but my problems did get better. The goodbelly shots are dairy-free. My husband bought me some kind of cultured nutmilk thing once and it was god awful. I think it's still in the fridge. I echo Jaboo on the fiber thing. I eat a fairly high fiber diet and had only minor digestive issues during chemo, and only towards the end.
I can't remember where I left off with my saga here but for anyone who needs a refresher: I had very little shrinkage of my primary turmor after chemo and still had three positive nodes (out of 18) at surgery, though all the satellite tumors and the area of non-mass enhancement had disappeared, and the remaining cancer was grade 1 (down from grade 3). Being as I had had two biopsies with discordant results (originally Her2- but subsequently Her2+), I was starting to wonder if maybe I had two different types of cancer in my tumor. I met with my oncologist and he said chemo wasn't a waste - that the tumor did show death of cancerous cells within the tumor though the tumor didn't shrink concentrically, and he agreed to have my surgical specimen retested for receptors and add either Perjeta or Ibrance based on the results. My path results are in - it is now testing Her2 negative, so we will have to see if he can somehow convince my insurance company to pay for both Herceptin and Ibrance going forward. In the meantime, my radiation oncologist is trying to get my insurance to pay for proton beam therapy, though I'm not certain I'll do radiation at all - I'm still working out the risk/benefit model and will probably seek a second opinion either at Stanford, UCSF, or MD Anderson.
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Hi dear triple positives,
This moves so fast it's hard to keep track!
hapa, that sounds like good news to me. Slow growing non-HER2 cancer. I don't understand why my surgical specimen was not retested for receptors since my MO also suspects two types of cancer were coexisting in my case, I will ask next time. Tomorrow I will go to the RO for after-radiation check up (finished radiation in mid July) and will ask about the survival statistics you mentioned the other day.
I am a yogurt/kefir fiend. Now going through a food poison episode. Trying to ride it out on white rice and lemonade.
LaughingGull
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Welcome everyone new.
SpecialK, I guess I thought lots of us started the AIs early. I had no idea I was your 1 in 8 years!
For background to others, I had multiple cancers in both breasts that came aggressively (less than 6 months to discovery) and the lobular (largest at 4cm) was not found by my exam, 2 physicians' including my Breast Surgeon's exams, mammogram or ultrasound. It took an MRI to find it. My MO admitted that he probably over medicated me and hit me with everything he had. DH and I supported his decision.
As for Arimidex, I did have difficulty from April thru mid August when I started with the generics. I tracked my side effects in an Excel Spreadsheet so that my MO had all the information he needed to get my insurance to pay for the brand name. I take the brand name now and whatever side effects that I have are truly manageable. I take the Prolia injection and will have my third one in late October. My last bone density show improvement. My eyesight has improved. My dentist says my mouth is in in better shape than before diagnosis. I also exercise daily.
My latest "procedure" was https://juliet-laser.com/. I think the worse part was the shaving! My GYN and I have been talking about this since my diagnosis.
It is a long ride being a Triple Positive. I want to share that I am just about one year and one month from chemo. I can really tell that I am feeling stronger and better everyday. I mostly feel settled and not so anxious about everything. I share this with the intent to give hope to those of you struggling. I believe the struggle is normal and part of getting to "settled."
Warmly, Vicky
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Hi, I’m Triple Positive
Some of the things I have read about Triple Positive treatmetns make me wonder if I have had strong emough treatment or the correct one..as they keep learning more about this type.
I have had Paclitaxel and Herceptin together..now just Herceptin and have added in the Letrozole. Nearly finsihed the Herceptin.
My cancer was early Stage 1a, however grade 3, HER2+ (3) and very high ER 99% and PG 90%.
The treatments themselves have been quite easy to manage.
I’m thinking of getting a second opinion...I’ve never quite clicked with my oncologist. I’m in Canada. D
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Eily333, for early stage TP, your treatment plan looks fairly typical. It does make sense to get a second opinion from an oncologist especially if you are not comfortable with your current MO. I understand your anxiety. Finding a new doctor may be the right thing for you. We are all left wondering if we did enough or too much after the worst of the treatments are over. It does get better. All the best
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wow! Welcome to all our new triple positive friends. We are so glad you joined us! I will have to go back and take notes to update more thoroughly! The board moved fast...
I wanted to provide my own update. I have been struggling with depression following treatment, and celexa, lexpro, and effexor did not work for me at all. I met with a psychopharmocologist yesterday, and he prescribed a new antidepressant called Trintellix. He says that it's new so doesnt appear everywhere yet, but is safe with tamoxifen. I willet people know how it goes.
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Oh, Tresjoli, I'm sorry to hear about your depression. One of my sons suffers from depression and anxiety, and it took about 8 different tries before we found a med cocktail that worked for him. Don't give up! I hope that Trintellix works for you.
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I am predisposed to GERD and while I have successfully controlled it with diet, a healthy weight, and avoiding certain positions for many years, I had to go back on PPIs and Zantac for the chemo. The dexamethasone is a major trigger but if I start the prilosec 4 to 5 days before the dexamethasone, and continue it a few days after and then use the Zantac as needed or to come off the prilosec, I seem to avoid the reflux.
A lot of my side effects are actually from the dexamethasone...I hate it. It also gives me hyperglycemia and makes my throat and esophagus tender, which makes it difficult to eat, but I fell asleep once without taking it the day after my infusion and woke up on the verge of vomiting so I guess I do need it.
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WC3.. omg I get the throat/esophagus thing too!! I didn’t know it could be from the dex but it is some misery.. and so hard to describe to folks who haven’t felt it. Any bread or other “rough” textured foods are a no go until close to my next round. It is misery. 😞 And I too have to keep a very firm hold on acid/reflux. In the early days after chemo I take Protonix 2x/day and Zantac as well at night. After the worst is over I scale the Protonix back to AM only.
I am so freaking thrilled to have just one more round to go.
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Tresjoli I’m so sorry to hear that. I hope you find a combination of meds and therapy that helps.
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Welcome to all the new triple positives. This is a wonderful community where you can find helpful information, encouragement and inspiration. The cancer journey is scary at first but you will find strength you never knew you had and develop many wonderful new friendships with cancer "thrivers" (coach vicky's awesome term!) who understand what you are going through.
I am just over a year out from my last treatment and I feel pretty good physically and super fantastic mentally. I do have side effects from the AI but they are totally manageable through exercise, good nutrition and various supplements. I have my next check up in November and am not fretting about anything at the moment but I'm sure scan anxiety will hit me closer to my hospital visit.
Being triple positive is not a "one and done" type of cancer but I feel the long term outlook is not as doom and gloom as I thought when first diagnosed. Things do get better over time!
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tres - I'm so sorry to hear about your struggle with depression. I hope the new medication works for you. Hugs0
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Elaine - thanks for the advice on the dex baseline and exercise encouragement. My baseline also showed osteopenia in the right hip and I am a little anxious to see the results from my next scan this November. I walk 6-7 miles almost every day which helps the muscle and joint pain. However, lately I have been getting stabbing pains along my spine and one of my toes. It's only happened a few times so I haven't contacted my MO yet. About a month ago I had swelling in my feet; that has gotten better on it's own. I blame all of these weird symptoms on the AI because generally I feel pretty healthy. Maintaining my weight is getting tougher but I am staying within a 5 pound plus or minus range so I think the exercise is definitely helping with that too.
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I am a little late to the discussion but wanted to confirm that I was put on AI at my very first treatment as part of the clinical trial protocol (Herceptin+Perjeta+AI for 5 years). So I have been on an AI for 2 years now. I was on Arimidix first and had such terrible body pain by 6 months...MO then switched me to Letrozole which I am tolerating much better. I did ask my MO about going off the AI and he said the AI was the most important drug in the fight against recurrence. Maybe that is why he included AI at the start of treatment in the trial?
I was not aware that most triple positives start the AI after chemo.0 -
ComeOn2019:
I had discovered my throat/esophagus tenderness was from the dexamethasone after a few infusions that had to be delayed at the last minute due to low platelets after I had already taken the dexamethasone. My mouth also becomes very sensitive to textures. Even rice can feel too rough. I also discovered that a lot of the bad taste I was getting was from my anti nausea meds and not tge chemo. I was switched to different ones and gladly take a little temporary nausea to avoid having the bad taste in my mouth for most of my cycle. My chemo causes things to taste bad/have no taste at all but only for about 3 days mid cycle. Anyway my next infusion will also be my last and I have a list with a bunch of food on it I intend to eat when I recover :-)
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Eily - I agree your treatment does sound pretty standard for us tp early breast cancer ladies. Interesting clinical trial to start the AI's right away. I started post 6 weeks post taxol and was on my second before finishing herceptin. Letrozole has been better for me than arimedix except my hair is definitely thinning. I've struggled with migraines this week but that isn't usual. I think it's the atmospheric change. Come on fall! It is hard for me to believe that the second anniversary of my diagnosis is coming up. Maybe I can do 5 years of AI's (I'll be 76 then so don't currently plan to continue past that). Welcome and keep asking all the questions you have. Taco
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Tresjoli2:
I'm sorry you are struggling with depression. I hope this new drug helps.
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awww thanks guys. It's been something I have dealt with off and on my whole life. Normally I know how to manage it. Tamoxifen has made that very difficult. I have three goals, prevent cancer recurrence, lose weight, and feel better mentally. These goals are in conflict with one another, but I am determined to achieve all three!
I posted because tamoxifen limits your choices. I was unaware trintellix was on the ok list since it is brand new, and wanted to pass that info along! Hugs to all!
Tres
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