TRIPLE POSITIVE GROUP
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I've been following on this board for a little while, but now I feel ready to join the conversation. Triple positive diagnosed 1/14/20 in left breast 10cm area and node positive. Completed 6 rounds of TCHP without too much trouble on 5/27 and continued on with HP every three weeks. Post Chemo scans showed complete imaging response to chemo. Unfortunately, I had DMX and sentinel node biopsy last week, both the breast and one node actually positive still for some cancer. Going in tomorrow for axillary node dissection and lymphaticoventicular bypass surgery. Anyone here had that microsurgery? It's supposed to prevent or lessen the effects of lymphedema after node removal.
After surgery i'll meet with oncologist to reassess treatment, assuming I'll switch from HP infusions to Kadcyla. My MO has been on leave since March, I think for Covid precautions, but is coming back this month. I was put with another MO who was also good, but now I'm hoping my origninal MO is back and here to stay. So many different treatments for Triple Positive hormone, it's really interesting to read all the different options people are going through. I'm so focused on getting rid of and keeping the cancer away, but I'm also a little nervous about the intense side effects of the long term hormone therapy. I'll do anything to stay cancer free, but I'm starting to feel a little sad at the thought of how much different my life may be from these therapies.
Also, I'm 43 year old mother of 4 kids ages 8-14. I live in the suburbs of Chicago.
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Fab4Mom - I feel you on all of this. I'm really interested in the vascular surgery you're referencing. I will have my BMX in August. I'm 54, so post-menopausal. So that will change my post-surgery treatment recommendations, I'm sure. I'm a little scared of the AI portion - although my MO has not mentioned any of that yet. Assuming they are waiting on what they find in surgery. So far, they are seeing a good response in the cancer, but I did have one positive lymph node in my original biopsy, so that is informing a lot of things right now.
Taco - PLEASE tell me about the AI and your decision there. I'm also post-menopause and that part alone scares me the most! I'm almost done with TCPH and then will have surgery. They want me to continue the HP (or something along those lines) for a year.
Kris
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Fab4Mom, sorry if my post made you think too much ahead. The journey is different for everyone. I have a good friend that I met during treatment whom are not bothered at all today. I do not think about cancer every day anymore and some things are for the better as well. You are in the mist of treatment so take one stride at the time perhaps. One thing my doctor told me way back is that being tripple positive use to be bad, now it is good due to all the treatments available. Sending strength and you will get threw this.
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Fab4Mom - You can do this! I was I diagnosed in August 2019. I 6 cycles of TCHP. A double mastectomy with reconstruction in March and exchange surgery in June. Since I had residual cancer in my breast at my bmx I started Kadcyla infusions in April as well as Tamoxifen. Minimal SEs with both. I feel great 99% of the time. I’m working. I’m active. And my taste buds came back. The one thing I have learned about BC is everyone’s journey is like a fingerprint. But to know what people have experienced and still experience helps you prepare. I always prepared for the worst but it never got that bad. Everyone on here is a blessing because they shared the good, bad, and the ugly. All we can do is learn from each other.
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Kris - I sent you a PM. I may have been confused about your age (maybe from someone else's post) but what I said doesn't change. It's up to YOU.
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"Kadcyla infusions in April as well as Tamoxifen. Minimal SEs with both. "
That's what my MO has me doing. You're the first I've seen doing Tamoxifen, almost everyone else I've talked to went straight to Estrogen Suppression and AI. I'm happy to find someone else with the same plan
I'm only on Day 9 of Cycle 1 (Kadcyla) but, so far (knock on wood) no SEs. 🤞🏻
@Fab4Mom - Hang in there. We made it through Chemo together we can make it through Kadcyla together!
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morrigan - Any SEs I experienced (a little muscle/joint ache after the first treatment, flu like symptoms on the second treatment) were noticeably gone by the fifth day after treatment. I’ve been blessed for sure.
I have noticed a lot of women getting the ovarian suppression shots. They did a blood test on my to determine if ai was in menopause but I guess I’m still pre-menopausal. My biggest surprise came Saturday when I started my period again after 8 months!
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AngieB92- I wonder if they’ll do a test for me to see where I’m at. I’m def still in “chemo” pause...but I’m not sure if that means I’m in full menopause...I’ll be honest, I’m excited to not have my period anymore and I certainly don’t want anymore kids (I’ve got 3 rowdy boys under 6). I just wish cancer wasn’t the reason for all if this. Regardless, I’ll be taking the zolodex shot at the end of this month. I try not to read too much about it because it doesn’t sound too pleasant. I’m hoping my high pain tolerance helps me...we shall see!
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Ajminn3 - how often is the zoladex shot? It’s supposed to hurt? Originally I was told chemo, surgery, HP and tamoxifen, but now Im realizing there are so many options for hormone therapy. I’m going to have to do my reaearxh
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Fab4mom- the zoladex is monthly but can be done every 3 months as well. My MO says we will start monthly and see how I tolerate it and then move to the every 3 months shot. I'm not sure if it's supposed to hurt, but I feel I have seen a lot of comments about it being painful and causing large bruises. I'll find out at the end of this month and report back! I'll also take aromasin daily. My MO opted for this route because I guess studies have shown it to be slightly more effective for “high risk" pre menopausal women. I had a coworker who did tamoxifen after her BMX (no other treatment) 5 years ago and is now going through a reoccurrence so I tend to side eye the tamoxifen, although I fully acknowledge with the rational part of my brain that she's one of many individuals that's been on tamoxifen and there's a lot of people that have no reoccurrence on it (my irrational and fearful brain just tends to take over more with this cancer stuff!)
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ajminn3,
I've been on Zoladex and Aromasin for over five years. I don't find the Zoladex shot to be particularly painful, though the needle is big. The nurse is literally shooting a pellet into your subcutaneous fat. I don't get bruised, and I don't bleed much in most instances. One big difference between doing Aromasin versus doing Tamoxifen is that the former is associated with bone thinning. I developed full-blown osteroporosis by Year Two, and am now on Prolia (which has helped me recover some of my bone density). Otherwise, both meds are associated with hot flashes and mood swings/depression (I'm on Celexa for that). Good luck!
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ElaineTherese- thank you for the info! It’s good to know it’s not a bad shot for some. My MO did talk about the bone thinning and suggested I start taking some calcium and vitamin D supplements. I’ll be getting a dexa soon and they’ll monitor my bones for thinning. It’s definitely a concern of mine. I’m on Zoloft already for anxiety (had to go back in it after being off for over a year when I got my cancer diagnosis). Hopefully that’ll help, but I’ll keep it on my radar in case I need to up it!
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ajminn - I also get zoladex and concur with ElaineTherese that it is not painful. I used to get lidocaine shots before my zoladex shot but now I just get iced. No pain or bruising. I got them in my butt for a while because I was planning fat grafting and those bled a lot but didn't hurt. I might get a drop or two out of my stomach but that's it. I had pretty bad bone density on my baseline DEXA; full blown osteoporosis. I haven't been on any biophosphonates but my bone density improved at my 1-year re-scan with relatively little intervention on my part.
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Is there anyone who opted NOT to take AI? If you were already post-menopause? Or started them and had to discontinue because of side effects? I am finishing chemo next week and having BMX in August. I'm 54 and haven't had a period in 2 years. I'm thinking about turning AI down, or at least waiting until the spring when I finish Herceptin. Thoughts? I will probably also have to have radiation after surgery, depending on what they still see in the lymph nodes.
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wahoo - I was surgically menopausal for nine years prior to diagnosis with breast cancer. My ER+ was 96%, meaning that on the slide reviewed by the pathologist 96 out of 100 cells had an estrogen receptor. That is a lot of opportunity for estrogen to fuel, and I had been post menopausal for quite a while. Aromatase inhibitors work on the conversion of androgen to estrogen from the adrenal gland that continues to be produced post menopause. The function of aromatase inhibitors is not connected to the estrogen produced in the ovaries, which basically ceases at menopause. Not taking aromatase inhibitors potentially opens you up to a recurrence driven by the available estrogen you still have. I took letrozole, then anastrazole - both generics - for a total of seven and a half years. I had some annoying side effects, but it was worth it to me to do all I could in preventing a recurrence. I understand your trepidation about taking AI drugs, but to me, leaving out this important aspect of means your treatment is incomplete, and could leave you at risk. This decision is up to each of us, of course. You might consider running your numbers on the PREDICT calculator with both taking/not taking, and see what it says. This calculator takes Her2+ into consideration whereas Cancermath does not. This is a UK calculator so be sure to put your tumor size in as millimeters (cmx10) and your chemo as 3rd Gen
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Wow is that predict tool terrifying. My oncologist told me I had a 10% chance of it ever returning in my lifetime. When I plug in my info it tells me I have a 78% survival rate for 15 years. That is a scary reality check.
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I would guess the percentage is better now with Kadcyla and Nerlynx being available. Whenever I get down about long term outcomes I remind myself that all current data is old data and, BC survival rates are constantly improving.
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Smichaels11,
Tools like Predict produce worse outcomes for patients who were diagnosed young like you were. I was diagnosed at 46; with my characteristics and treatment, it says I have an 80% chance of survival in 15 years. However, if I lower my age, my chance of survival goes down. Take those tools with a grain of salt.
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i really can’t take those prediction sites, they are overwhelming and not helpful in my treatment anyway. But I have fallen prey to trying them.
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Using the Predict 2.1 tool shows a 15 year survival of 75% for me. One of the valuable takeaways is looking at the breakdown of percentages that certain treatments provide. I originally suggested looking at this tool to help determine whether adding anti-hormonal would be of benefit, and how much. When I put my numbers in it shows as much benefit from anti-hormonal as chemo, and more than Herceptin. I think it’s important to suss out this kind of detail, while still realizing that these are averages, because it may be helpful in decision making. I fully understand looking at these percentages can provokeemotions for those currently in treatment, my perspective is different at ten years out.
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Huh, I never paid close attention to the breakdown, I had them backwards. I knew surgery provided the most benefit but, I thought Chemo was 2nd and, hormone treatment 3rd. It's the opposite, Hormone treatment provides more benefit than Chemo.
It's also interesting that your rates go up if you've already received 5 years of Hormone therapy.
Has anyone had an MO suggest more than 10 years? One mentioned the possibility to me. Obviously there are downsides and, I don't know if any studies have been done on long term (10+ years) pos/neg.
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Special K - thanks for that resource. I will take a look. I know what the AI is for - I just don't know if I'm willing to risk the side effects against the recurrence rate. I'm also waiting until I have surgery to see what's what in there. Then I'll decide. There are some natural options also that I'm researching. I'm make a VERY informed decision and decide what I'm willing to tolerate vs, risk.
Kris
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wahoomama87,
My oncologist waited until I completed surgery before she put me on Zoladex + AI. You've got time to think about it. The hormonals are very powerful drugs. Stage IV patients with estrogen positive breast cancer typically begin with the hormonals, and they can keep these patients NEAD (no evidence of active disease) for years.
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ElaineTherese -
Thanks. I'm definitely not stage 4. I did the Predict site that SpecialK mentioned and for me, using the AI only increases my percentages by less than 5%. So I'm not sure I see the risk/benefit with the side effects. Especially given that it doesn't take radiation therapy into consideration. I'll still see what the MO recommends and go from there. I just feel like the potential side effects are SO bad - and just require adding more and more medication to counteract those.
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wahoo - don’t assume you will experience side effects that are severe. Many have mild to none, or the ones they do experience can be mitigated more holistically with diet and exercise. I know you are giving this careful consideration, but it’s also important to note that you will see more complaints about side effects on a site like this. I did receive Prolia during my AI use - my only additional medication -but my osteopenia was pre-existing. I had no side effects from the Prolia and it also may have provided some degree of protection from bone mets.
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on the Facebook Support Group I joined they said it's a matter of finding the right AI for you. Basically made it sound like a Goldielocks situation.
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When I filled my first prescription for letrozole, a generic of Femara, the pharmacist told me that often the fillers and additives in each manufacturer’s formulation can cause some of the side effects patients experience. It can often take some experimentation with different makers or different AIs to find the one that suits best, including the brand name. I did not stay on the same generic and found the one I did best on had the fewest additional ingredients. You can use this site to check on the ingredients in your prescription.
https://dailymed.nlm.nih.gov/dailymed/index.cfm
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wahoomama87,
I'm with Special K. You can't assume that you're going to get severe side effects from an AI. Also, radiation is a localized treatment; hormonal therapy -- like chemo -- is systemic, so their impact isn't really that comparable. There are many, many threads on BCO.org where people complain about the hormonals and discuss opting out of them. I have no doubt that they are describing real and often debilitating side effects. But, I don't post on them because all I can say is that I find OS + AI tolerable.
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I just wanted to say this discussion is so helpful to me. I am expecting some AI as I have very strong ER/PR positive and you guys all know so much. I really find the healthy debate enlightening.
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I repeat what I said to you privately - try a few. Also, talk to MO about the benefit depending on when you start related to your other treatments. It's hard, scary, overwhelming. Stay close.
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