TRIPLE POSITIVE GROUP
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tld - I wanted to chime in and add my support - I know you're worried but also want you to know you have folks out in the world who are lifting you up and hoping for the best for you. In your pocket today, with fingers crossed.
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Thanks, SpecialK! I remember you from five years ago when I first started this journey and hope you are doing well! I think there was another sweet lady that posted back then too, I want to say her name was coachvicky? I hope she is doing fine as well. I was so nervous today and with having to wear a mask in the MRI machine, the tech said I was breathing too deeply and she had to do one of the sequences twice but other than that and some difficulty with getting an IV started, it was all good. My results will be in mychart by Monday morning but I know I will be too nervous to look and will wait until the appointment on the 23rd. Thank you for the emotional support - it is appreciated!
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I remember you too, and I am sorry that you are facing this unknown situation at the moment! I am hanging in there! Coachvicky did indeed post here back then, I was fortunate enough to meet her in person when she came here to have a second opinion appt with my MO. She has not posted in a while, and I know her DH had some health issues, I am also hoping she is doing well. Glad the MRI is done, but I know the wait for results is hard - distract yourself, if possible, between now and your next appt. Sending you light...
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It's been awhile since I've been on here and I'm always so grateful to read everyone's thoughtful posts and advice. I am 5 years out from chemo, radiation, lumpectomy and am wondering why I never thought about having an oophorectomy? I am on arimidex and will be for another 5 years but am thinking I should just have this surgery. I don't have any problem with arimidex but my mother in law just passed from ovarian cancer and it got me thinking why not remove my ovaries? I am 51 and in menopause so from what I've read there aren't any negative side effects from the surgery. Has anyone here made this decision for themselves? I am going in for a yearly checkup next week and will ask about it but would love to hear feedback from this community. Thank you!
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Hi!
Even if you removed your ovaries, your MO will still recommend Arimidex because your body will still make estrogen. An ooph is a substitute for estrogen suppression via Zoladex or Lupron. For example, I'm (still!) not menopausal at 55, so I'm doing Zoladex + Aromasin. I could skip the Zoladex by getting an ooph, but I haven't done that. My OB-GYN is just not a fan of removing healthy ovaries, even though she would if I insisted.
Is there a history of ovarian cancer in your family? There is in my husband's (two of his aunts passed from ovarian cancer).
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Hi Elaine! thank you for your response. There is not a history of ovarian cancer in my family. My sister had breast cancer too. But don't we triple positives have an increased chance of ovarian cancer? I think my Dr. will be the same. She prob won't be a fan of removing healthy ovaries but she will if I would like to. I'm not a fan of unnecessary surgery either but I'm not reading about any downsides. I'll have to talk more with my doctor about this for sure. Thanks again, I greatly appreciate your info.
Oh I should add - I don't mind the Arimidex. It doesn't bother me at all. I just was thinking why not try to prevent ovarian cancer if I can.
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I got the results of the pelvic MRI this morning and there is no convincing masslike quality in my sacrum. No convincing pathologic enhancement identified in the visualized pelvis to suggest metastatic disease. I still have a lot of pain and numbness so something is wrong and my oncologist faxed over the info to my ortho dr. to see what else can be done for me, BUT this 20+ mm "tumor" is not showing up at all now! Since it was first found six weeks ago, I have also had a CT scan and a whole body bone mri with and w/o contrast done and those two tests also did not see it. The oncologist said no more tests for now! I am pretty stunned and in shock.
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I am THRILLED for you! I've been following your journey with this and I am just over the moon with happiness for you. I, too, was diagnosed around 5 years ago with no lymph node activity and it was shocking to hear that this path we're on could change so suddenly. I mean, of course I know it can, but I don't typically spend much time thinking about that. Anyways, enjoy this amazing news with your family. This is the best thing I'll hear this week!
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Thanks, Joules - I still can't believe it! We are going out with family for a celebratory dinner! I know something is wrong still, but the tumor is gone and I'm going to rejoice in that for the moment!
Thank you for your sweet message!!0 -
Whoo-hoo, tld! Awesome news. Hope they figure out what else might be going on soon.
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tld2017 - oh my goodness I'm so happy for you!!! Over the moon! I'm so grateful you shared your experience here and am so so glad your tests came back clear! I wish I could hug you right now! Sending all the hugs!
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tld - awesome news! Celebrate indeed, and here's hoping you can get to the bottom of whatever is causing trouble and eliminate it!
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ElaineTherese, JH40, and SpecialK, thanks so much for your kind messages! Hugs sent to you - grateful to be able to share good news here!
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Joining the chorus to celebrate the excellent news. So happy for you tld.
About the oophorectomy, as others said, it would not be a substitute for AI treatment, i.e. you would have your ovaries removed and still take an AI for the period recommended by your MO (either 5y, 7y, 10y....whatever); the surgery is very easy, but there are negatives of having your ovaries removed. There are positive effects in the body of keeping your ovaries, not perfectly understood but mainly protection against heart disease and protection against osteoporosis. I got my ovaries removed because I had very painful ovulation and cysts (I didnt want to deal with that; the pathology report of my oophorectomy revealed some endometriosis) and also it made sense to be very agressive about the hormonal component of my cancer because I have high risk of recurrence.
I had osteopenia before the oophorectomy + AI, and now I have osteoporosis that gets worse and worse every year
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laughinggull - are you getting bisphosphonates? I had osteoporosis from the get-go, which got better and then worse again. Nobody has recommended bisphosphonates for me (and I don't think I want them anyway). I fall about once a year while trail running but no broken bones yet!
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Ladies are there any of you that have had a less-than-nightmarish time on Tamoxifen? It's been 5 months since my last chemo and I still haven't started on it. My APN (who is basically my oncologist at this point) has been gently encouraging me to at least try it, but I'm scared to death of the cornucopia of crappy side effects after feeling like I'm just now getting to some normalcy with my exercise and sleep routine (without Ativan for 2 months now!) and my anxiety has been very low; such a blessing!
I'm also wondering if for us triple positives it's as beneficial? My ER/PR were considered moderately positive at 60% if memory serves. 85% of cells with Her2. Not sure if that makes any difference in terms of efficacy?
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I never tried Tamoxifen, but I have been on Zoladex + Aromasin for eight years. It is bearable, though I have gained weight and have to take Prolia because of bone density loss. Of course, my cancer was 95% ER+/95% PR+, so there's that.
I would suggest trying it, given that you can always stop it if the SEs are too awful. I understand about wanting to feel "normal," but the SEs from Tamoxifen should cease if you quit the med.
I'm lazy and have never researched the question of whether hormonal therapy is more or less beneficial for triple positives. However, hormonal therapy is something I can do to prevent going Stage IV so I'll do it. Good luck!
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JH, I took tamoxifen for 8 years. I dreaded it too and started after radiation (after surg, chemo and during Herceptin)but it wasn't bad. Since my treatment put me into menopause, it's hard to tell what twas tamoxifen and what was menopause. Main symptoms were hot flashes but for me they weren't bad hot flashes- more like hot face flushes. Vag. dryness too but that might have happened anyway with menopause. . I've run 5Ks and traveled and gotten new jobs on tamoxifen. After 8 years of tamox I did start to feel tingly in hands and feet and I asked to stop it as the NP for my MO had said 7 years was enough. But my MO wanted me to try an AI for two years. So that's what I'm doing now.I dreaded and delayed starting the AI but it's not that bad. I have been on the AI for a year and 2 months. I do a lot of I exercise a fair amount on the AI as with tamoxifen and I think that makes a big huge difference. Avoiding too much regular sugar and alcohol and for me gluten also makes a difference. I take extra magnesium and biotin. As much as I want to be off these drugs, the feeling that I'm decreasing recurrence odds makes it worth it. Still I hope next February will be my lsat pill, but who knows, the standards always change.Good luck- give it a try- you can always quit.
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elainetherese & momwriter - thank you for the encouragement. I’m grateful for it! I looked at the Predict UK tool and Tamoxifen yields between a 3.2-6.1% decrease in my recurrence risk from the 10 -15 year mark, from an overall recurrence risk of about 20%, so it’s not high, but it is significant. I want to do all I can so I’ll try and give it a whirl here pretty soon.
If anyone else wants to chime in too, I’m all ears!
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jh40:
There are a number of different options for anti-estrogen therapy and some you might tolerate well and others you might not. If you have difficulty with tamoxifen, there are other similar drugs in it's class or AIs, of which there are at leasr 3 that I know of. The only way to know how you will do on any onr of these medications is trial and error. These medications can increase your chances of long term survival more than the chemotherapy.
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Hi there,
I have a few questions for those who have had HP after chemo. I've just finished TCHP followed by lumpectomy. Next up: HP drip for the rest of the year. 1) did you feel ok after your HP infusion to drive yourself there and back and 2) has anyone has the Herceptin shot? I asked my NP if the shot was an option since I've already taken so much time off from work and she didn't seem to know. (Edit: might be because the want me have Perjeta too--answered my own question)
Thanks to everyone who posts such helpful info. I'm following responses about radiation and tamoxifen since that's next! This is such a lovely, supportive community! 💓
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greenbean - I had 12 HP treatments after my mastectomy and drove myself to each one. I had the treatment through my port and was at the center for about 2-3 hours, depending on what else I needed. It was every 3 weeks, just like my chemo treatment. Hope you’re doing well
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Thank you, cardplayer! Very helpful to know how the HP appointments were for you. I've been wanting to drive myself more now that the TCHP fatigue is lessening so I will give it a go to my first one tomorrow.
Hope you are well!
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Greenbean, I did fine with herceptin ( 30 minutes was too fast so I ended up having 60 minute drips and drove myself to all appointments. What I would do differently would be to have them run the drip at 90 minutes, as there are less side effects (per SpecialK). You will do just fine.
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green bean - Ive been doing Herceptin only since December. I’ve run all my infusions over 90 minutes, including when I had them during chemo. I’ve had one treatment that caused a headache. My skin breaks out, but nothing serious. I feel a bit run down but nothing that stops me from my normal routine. Much easier than chemo
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I tried Letrozole after radiation, lumpectomy and chemo. Letrozole was awful. Having had L sided radiation which is a worry about heart issues down the line. I have been given Aromasin to try but all of these AI drugs have such horrible side effects on the body. There are also new articles about AI's a increase of heart failure (by cardiologists, not oncologists), which I have a history of in my family. I dread going back on any of them and the oncs all push them per protocol. Still seems like such a crapshoot whether or not anyone gets a recurrence whether they are on these drugs or not. Have any of you HER2+ gals not gone on these drugs and have been cancer free for years?
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I had a lumpectomy, radiation, chemo and a year of herceptin. I took arimidex for about 18 months and then tamoxifen for a few months after I couldn’t stand the arimidex. I decided to go forward with no more drugs. I was diagnosed in 2015 and I’m still cancer free. It’s a personal decision, and yes, a crapshoot. I weighed the size and grade of my tumor and I felt that almost two years was enough. Your results may vary. It came down to quality of life for me.
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I haven't posted here in quite a while but it's good to see the new version of the site <almost> finished. Re: Herceptin only, I drove myself to all appointments (which I'd done with chemo too) but wanted to comment to keep up with your protein. I was eating tons through chemo, cut back a bit when it was only Herceptin, but sometimes felt a little woozy when going home. Upping the protein again really helped. Re: the shot, I asked about this back when I was about to start (2018). They've been doing the subcutaneous shots in Europe for years. At least back then it was still not FDA approved in the US. I'm a little disappointed that hasn't changed.
As to the AI, I'm 4.5 years in. It hasn't been wonderful but it's become the new normal for me. I need to decide this fall whether to extend another two years. My MO said at my last appointment that the first five years are to prevent a distant recurrence—metastasis. She said after five years you've gotten that benefit. The additional years are to help prevent a new breast cancer. I think she said it would cut my probability from 3% to 1.5%. I'll have to think about it over the next few months. I told her that at a minimum I'd like to take a break.
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Well this version of the site, looks much better than the last "update".
I officially finished treatment last Monday. I did 6 Cycles of TCHP, 25 Radiation, 14 Cycles of Kadcyla, I did a year in a Vaccine Trial and then 1 year of Nerlynx. I'm also on Tamoxifen for at least 5 years.
Has anyone done the Guardant Reveal Blood Test? My MO wanted me to do it back in March but, I said I wasn't interested but, wanted to see others thoughts
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Hi Morrigan, may I ask how old are you at the time of your dx and what is your stage? I am currently on TDM1. and not sure if I should take Nerlynx or not.
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