TRIPLE POSITIVE GROUP
Comments
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boogirl - my MO gives his breast cancer patients who have expressed interest a 500mg dose of Metformin. I believe that would be a low dose for controlling diabetic blood sugar levels. It is hard on the stomach and can cause the Big D, so is best to start well after any chemo or targeted therapies. I too had some elevated blood sugar - I blame five years of Lipitor taken for high-ish cholesterol. I was taking that for several years preceding and also during chemo and into letrozole. Because it can cause joint/muscle pain I spoke to my primary care about stopping it because I had joint and muscle pain and didn’t feel like I could stop the letrozole. My total cholesterol is high, but the number is driven by my good cholesterol. My triglycerides are fine, so I tapered off successfully with no real increase in total cholesterol numbers, but was left with the blood sugar issue. I did change my diet somewhat and that seems to have normalized now but it took a while. I still hover just inside the normal range, but my A1C is also ok. Here is a link to some info about Metformin and breast cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6637843/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4811404/
https://breast-cancer-research.biomedcentral.com/track/pdf/10.1186/s13058-015-0574-3.pdf
cdw - I was never on Tamoxifen, but have read that some of the side effects people experience can lessen or dissipate after some time passes.Hoping this is temporary for you!
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Hello, all, I have a few questions about the hormonal arena of treatment. I finished chemo on 11/3/20 and finished rad on 3/1. My period returned during radiation, and I started trelstar on 3/8. I will start anastrozole in a couple of months—my MO didn’t want to start OS in the middle of rad and doesn’t want me to start AI’s before getting a sense of how I’m responding to OS.
My first question is how quickly trelstar starts working. I haven’t had any hot flashes yet (I did during chemo) and had a few days of light bleeding about two weeks after the shot (which was during my second post-chemo period, so this bleeding didn’t match the timing of a normal period). I am kind of paranoid about it not working for me for some reason, which leads to my second question.
Is it worrying that period came back so soon? I read the study that showed that women with chemo-induced amenorrhea that lasted >6 months had better outcomes. My lumpectomy showed only a 2mm area of residual DCIS, which is considered a pCR, so I know I have a good prognosis, and I don’t even know why I feel the need to ask questions about risk at this point because obviously as an individual, statistics don’t matter that much—I either have a 100% chance of cancer returning, because it will, or a 0% chance, because it won’t. And yet, I still torture myself, or hope for reassurance.
Thanks for sharing your experiences
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Anna,
If you want to know whether OS is working, you can ask your MO to test your blood for estrogen levels when your other blood work is done. I started Zoladex six years ago and have never had any breakthrough bleeding. Then again, my period stopped about four months into chemo and never came back. However, I was 47 at the time, so my period had been getting lighter before I began treatment.
Not everyone has the same side effects from OS. I did get hot flashes, but I started Aromasin at the same time as Zoladex, so that might have been the culprit. ((Hugs)) It's easy to worry and to wonder if you're doing enough to keep a recurrence at bay.
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Hopeful2020 - my HR2 status changed after my lumpectomy too. It's not uncommon as the initial biopsy may not pick it up. Treatment is long but with encouraging results.
I too was pre-diabetic. Started 500mg metformin twice a day sometime in my first year. Some believe it also helps with joint pain but I'm not sure. But I'll soon be 75 and arthritis definitely has reared its ugly head. Many also believe a gluten free diet is helpful. I haven't tried that as DH would have a rough time and he does the cooking but do try to watch it.
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Thanks Taco! I am getting ready for radiation. I posted in the April radiation group and will post here too - it's been 5 months since surgery and with Chemo done, what exactly is radiation going to do? How long was yours? What kind of info do they look for in the scan?
Since the lump is gone now and mammogram showed all clear, I wonder if it would just be a whole breast radiation with lymph nodes? Any info will be helpful. Thanks!
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Sorry, I can't help you on that Hopeful2020. I had brachytherapy before my HR2 status was even determined. Brachytherapy is done right after surgery for a week twice a day - they put the rods right in the surgical cavity. Going on the radiation thread is good and I'm certain someone will chime in about your radiation treatment here.
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Hello all,
I am new here too, still have to work my profile out. I was first diagnosed in 2003 at 42 with Triple+, left mastectomy, 2.5cm tumour, and 1/19 nodes. Stage 2. I had 8 treatments, AC/DC and taxol, plus 5 yrs Arimadex. This is before Herceptin days. Cancer free for nearly 18 years
I am now newly diagnosed with a new Triple+, small tumour Stage 1A, <1cm, just above my mastectomy scar. Had a lumpectomy, and a prophylactic right mastectomy. Petscan all clear. Waiting on appointments now to see MO. I believe radiotherapy will be my first port of call. My big concern is doing Herceptin, and reading the risks, I wonder if it really is worth it, if I have chemotherapy anyway. I live in the country, too far to get to the hospital, or have an ambulance come if something goes wrong
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I'm sorry you are joining us again. I think a lot of people handle herceptin very well. It affects some people's hearts but that is a small percentage. Some stage 4 people take herceptin for over 10 years with minimal side effects. It is a very good targeted therapy for her2. Personally, I think it would be worth trying and reevaluate risks after an echocardiogram or MUGA at 3 months. Do you have a heart condition that has you more apprehensive?
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nobananas - redcanoe asked the question that occurred to me, do you have any existing co-morbidities that you are concerned about with Herceptin? The vast majority do just fine, and have more reactions to the chemo rather than the Herceptin. I have never heard of anyone on this site over the ten years I ahve been here needing to be taken in an ambulance due to an issue with Herceptin. The drug has been around and in use with FDA approval since the late '90's, so it has a long enough track record to provide adequate assessment of acute reactions.
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Is it the combo of Chemo+Herceptin that's bothering you? Herceptin doesn't really add any issues to the Chemo. Herceptin only is generally easily handled. I don't think I've ever heard anyone complain about Herceptin.
Sorry you're going through this again, especially after 18 years. Just out of curiosity is this considered a local recurrence or a new primary?
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morrigan - I was pondering the same question - if it is a recurrence for nobananas I would think it is a hormonally driven recurrence that happens to be Her2+. The Her2+ driven recurrences tend to happen rather quickly - usually within 2-3 years. Alternatively, a new primary, even in the same location is a possibility, and I am curious what the MO will say.
nobananas - waiting with you on next steps - hoping your MO appt provides information and reassurance on the way to proceed that will provide you the most benefit with least risk.
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Hi ladies, triple positive here. 35 when diagnosed. On my daughters birthday. First chemo on my bf's birthday. Surgery on my brother's bd. And next are cording exercises on my sister's birthday. We joke about my timeing.
Sorry for my english, Im not from usa. Correct me if needed. 🙂
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Welcome JustStorm! Sorry you had to join the club.
"35 when diagnosed. On my daughters birthday. First chemo on my bf's birthday. Surgery on my brother's bd. And next are cording exercises on my sister's birthday. We joke about my timeing."
At least this way, you'll never forget the dates and I've been asked a lot from everyone doctor I see as part of the medical history
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Hi morrigan thx
I have been wery lucky,one day before new years eve found I had complete response to chemo, got clean phd after surgery. No complaints here. Just waiting to go to work, this cording delayed that, but I'm fixing it. I just need to start living,this delayed my life long enough.
About dates I missed all this year, but next year I'm celebrating. Had more issues with remebering names of all my medicines. Still find my self confused sometimes.
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JustStorm - if it's any consolation to you, I had my bilateral mastectomy on my husband's birthday! Happy birthday honey! At least I got immediate reconstruction, I guess.
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Well your health is best present by far I guess. Hope U are doing well, that is something to be celebrated.
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Thank you ladies for your response. I have no co-morbidities, and am in pretty good health. I’m on no medication either. My SIL had Herceptin at a younger age than I am now, and went into heart failure. I’m too far from a hospital if this happens. This is classed as a new cancer, and unusual as it is, appeared as a small pinhead on my mastectomy. It caught my eye in the mirror. I felt it did grow over the next couple of days, well, biopsy said 6mm. By then, it was an obvious lump, and could be seen clearly sticking out on top of my flat chest. So having a prophylactic mastectomy just now, will help me identify any other lumps that may arise in the future, very easy to identify on a completely flat chest. NO REGRETS! And no more mammograms.
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I’d like to add, perusing all the chemotherapy list, I can’t believe the exact same chemos are used now that they used 18 years ago! I thought they may have moved forward. HP are the new therapies for HER2+
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Heart failure happens about 4% of the time with herceptin. So it's unlikely you would also have that side effect. Even if you did, heart failure isn't a call a 911 medical emergency. A lot of studies are showing the heart effects are reversible most of the time. I personally felt that the risks of herceptin far outweigh the risk of distant metastasis.
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Thank you Redcanoe, I appreciate that. I see you are on Taxotere, which was a brand new chemo 18 yrs ago. I took it too.
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NoBananas,
There are some new chemos, but the Stage IV crowd gets them first. Xeloda is a relatively new chemo.
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No Bananas - Herceptin is the game changer for TP. Quarterly echos are ordered to check on your heart but it shouldn't send you to the hospital unless you have other co-morbidities. Special K Is the expert with the statistics and talk to your MO but I'm glad I did it. I had NO problems with Herceptin after I finished chemo. I was able to easily tolerate a 30 minute infusion every 3 weeks although some ask them to slow the drip down.
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oops I meant benefits of herceptin outweigh risks
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"My SIL had Herceptin at a younger age than I am now, and went into heart failure. I’m too far from a hospital if this happens"
It's very rare but, they do monitor for it and, it does heal on its own (generally). My November Echo had me borderline but, the MO decided to proceed. I was worried that my February Echo would put my Kadcyla on hold but, my last echo was actually better than the previous 3 (55, 55, 45) February has me at 60.
If you're really worried about heart issues, I would say go with TCH over AC+T-H. Actually for your size tumor you might be able to get away with Taxol+Herceptin which (from what I'm told) is easier on the body. I've heard there's a new protocol (or perhaps it's still in trial) where you can do 17 rounds of Kadcyla (Herceptin bonded to a Chemo drug) and, avoid Taxol or Taxotere, Carboplatin, etc).
Personally, I handle Kadcyla very well but, there are others who really struggle with it so I don't know how great it is for 17 cycles (1 year) vs 11 weeks of Taxol or 5 months of TCH.
That is interesting that it's a new cancer and where it popped up. Glad you caught it so quickly. Although, I'm still sorry you have to go through this almost again.
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Hi everyone, I had my last round of TCH yesterday and will just be on Herceptin for the rest of the year. I'm looking forward to starting to regain some strength and energy and getting back to being me! Just wanted to share my news with some people who actually understand what this truly means. 🥳
No more steroid or Neulasta!!!! The worst part for me.
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Congratulations on completing Chemo proper!
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Good news, MsMurphy! I hated the steroids, too. I just loathe insomnia.
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Congratulations MsMurphy! Me too!! I go back for Herceptin next week. And starting radiation in 2 more weeks!
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morrigan_2575, may I ask, were you diagnosed twice within 6 months of a different cancer? While you were already on treatment? Or am I reading your profile wrong
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I had Chemo before surgery so the first is a clinical staging the second is the surgical staging, same cancer.
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