ER-/PR+ BC girls come here
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That's fantastic news Alice! It is such an unusual combo that there aren't many stories to go by. I did meet a woman locally who is also ER-/PR+/HER2+ and she is a little over 5 years out. Can't wait to get there myself.
I'm still taking the Tamox but I've gained 12 pounds in the past 6 months on it. I exercise regularly and eat a healthy vegetarian diet with no sugar. My onc said yesterday that I will have to work twice as hard to keep weight off while on tamox. Not a reason to stop but certainly an annoying side effect:(
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Hello Monkeymom
Pleased to see you are catching me up!
Great news about the lady you met locally who is over five years out with our rare combination. Thanks so much for letting us know about this.
Best wishes
Alice
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Hi again everyone - how are you all doing?
Well I took tamoxifen for the past 3.5months but have now stopped to see if I feel a bit better. Docs happy about this. My specialist keeps explaining to me that my PR+ tumour only technically shouldn't really exist - but they do! So still debate if Tamox is providing any real benefit.
I'm definitely in menopause now though - chemo set that off so no period for over a year now. Hard to know whether some of the symptons I've had are just menopause related.
Plus I do get lots of aches and pains.
I really need to concentrate on diet and exercise as the more reading I do - the more I know this is probably the most beneficial.
How are you all going on that front? Also what type of follow up checks are you getting?
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I'm glad you posted about the Tamox. I'm starting to struggle a bit with it and not knowing whether it is providing any real benefits is frustrating. I don't have hot flashes or any side effects other than WEIGHT GAIN. I'm not vain and complaining about a few pounds. It's more like a pound a week! I'm exercising and I eat extremely healthy (all organic, vegetarian, no sugar etc). The dr told me I'd have to work twice as hard on the tamox to stop weight gain. I'm up 13 pounds in about 5 months. On a 5'2" person that's a lot. I'd gladly take the extra pounds if hormonal treatment was my primary cancer fighter....but since it's benefits are unclear.....
I'm guessing I'm in menopause (or at least a prolonged chemo pause) but since I'm only 36 it's hard to tell.
I finished Herceptin this month and will now be monitored every 3 months by my onc. My last surgery is next month (nipple reconstruction and port removal). It feels good to be almost done.
If anyone has heard any new information on tamox benefit for PR+, I'd love to hear about it. We are a rare breed indeed!
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yes I can definitely relate to the weight gain thing Monkeymom. I have put on a tonne of weight too with chemo (taxol) and tamoxifen. I felt like I just had no energy or motivation to stop eating. Mainly in the last 2 months. Plus lots of hot flashes for me and wicked headaches. All have got better since stopping a couple weeks ago. I have just started exercising again so hopefully that will help to shed some pounds. I too would have no hesitation in staying on the drug if I was ER+ but at this point I'd rather have quality of life than quantity. I really don't think I'll go back on it unless I have too.
Good luck with your surgery next month.
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Hi Kruise, how are you sweetie? I thought I would give you some encouragement for your exercise program. You go girl! I have been exercising and I feel sooooo much better. I Am on AI and it causes a lot of joint stiffness and pain. The exercise is what keeps me going and the side benefit is that I have lost about 20 lbs. I'm a real hottie pa-tottie. LOL. I like to do the walk at home program on you tube. I am planning to get my avatar uploaded this week. I have my pixie cut after chemo and I am going to keep it. Like I said......I am a hottie pa-tottie.
Love you and hope you feel better every day. Shine on!
MsP
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hey MsP
Lovely to see you 'popping' in beautiful lady! Thanks for encouragement. Need it at moment. Sounds like you are doing brilliantly. Will have to check out that walk at home on you tube thing.
I have done good walks the last 4 days but not yesterday as had to drive home from another city and it was 7 hours in car for me. Will start again today tho!
Look forward to seeing your avatar pic
Much love xox
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Hello ladies
Just to let you know that it is three years now since my diagnosis with ER- PR+ HER2+ breast cancer. No lymph or blood spread, same as after my MX and treatment. Hope this offers encouragement to those with our receptors.
I am wondering whether the slight PR+ was the result of a thick band of adipose tissue around my tummy! Apparently, adipose tissue can release its own hormones.
Not a scientist so wondering if this is possible with PR+...
Good luck to all those going through treatment.
I know what its like but it seems to have worked so...good luck!
Alice
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Hey Alice - thanks for popping in. And that's awesome news that you are doing so well. Interesting about the tummy stuff - I have always tended to carry weight about my middle region. I might need to start working on that as its not a good thing health wise.
It's been two years out for me and I'm doing ok too.
Fingers crossed for us.
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Hi Ladies it seems as this thread has been quiet for a while I am ER- PR+ HER2- I have had a lumpectomy left side , 8 nodes removed no systemic spread , 4 rounds of chemo and 38 rounds of full breast rads, I had ovaries removed and am trying to deal with se of Aromasin wondering if it is worth it. I am 52 and the bone pain is bad. Thoughts
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Hi Sandy I am new to this site but similar Receptors and age to you how are you doing on the hormone therapy?
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hi Calgrl - I see you posted a couple of comments on here. Sounds like you are having a rough time on the AIs. I haven't had my ovaries removed but did take tamoxifen for two years. After much debating and research after I had a tonne of uterus endometrial issues, I decided to stop taking it. It's primarily targeted at ER+ tumours and that wasn't mine!! I am happy with my decision. 4 years 3 months out now for me.
Good luck
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Hi there, I'm new to this site and good to hear that there are a few of us that are PR+ only.
My first dx was in 2005 and I was ER+, PR+, HER2-. Had recurrence in December last year 2016 cancer had been lying dormant for nearly 12 years then decided to grow again. Found a lump in supraclavicular lymph nodes above collarbone and internal mammary lymph nodes. This time the biopsy turned up ER-negative 0% , PR-positive >50% and HER2 - negative. So I'm like you guys now. Onc isn't going to put me on hormone therapy this time as he says it won't do me any good, but he's looking into a drug that they use for prostate cancer 'Flutamide'. Anyone heard of this or tried it? I've had NabPaclitaxel chemo for 12 weeks just finished but it didn't work, now I've been put on Xeloda.
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Hi Kruse,
Thank you for your reply. I am so glad you are doing well and at peace with your decision. I am struggling to find that peace of mind. These meds are awful and I feel like they increase the other issues that make me more at risk like weight gain and lack of exercise because I am so drained not to mention bone loss which I already have.
Have a great weeken
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Hi Petrea,
That stinks that it came back. I can only imagine your frustration. I have read about the prostate med and am so curious about it. My oncologist has not even mentioned it, they keep saying that even a slight positive means it can help. Please keep us posted and hope you are feeling well. I am going to ask my onc and will report back.
Take care and watch funny movies
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Hi Calgrl,
Yeah I though that too. I've been on the Xeloda nearly 2 weeks now and then I'll have a week off, no side effects yet but it's only early days. I can still feel the lump in my neck which is disconcerting and I don't like the fact they can't operate, I'd love to be able to have it cut out. Re. tamoxifen, nearly everyone seems to be on it but my onc still says it won't do me any good. I'm keeping it in mind though and will question him again, I remember reading somewhere if tumour is low grade tamoxifen can work well, if high grade not much use. My onc leaves for US in a couple of days for about 2 weeks and I'll be talking to him about the Flutamide or a similar type of drug when I see him 14th June. I'll keep you posted on how it goes.
Like your idea of watching funny movies, I love a good laugh.
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Hi Calgrl,
Yeah I though that too. I've been on the Xeloda nearly 2 weeks now and then I'll have a week off, no side effects yet but it's only early days. I can still feel the lump in my neck which is disconcerting and I don't like the fact they can't operate, I'd love to be able to have it cut out. Re. tamoxifen, nearly everyone seems to be on it but my onc still says it won't do me any good. I'm keeping it in mind though and will question him again, I remember reading somewhere if tumour is low grade tamoxifen can work well, if high grade not much use. My onc leaves for US in a couple of days for about 2 weeks and I'll be talking to him about the Flutamide or a similar type of drug when I see him 14th June. I'll keep you posted on how it goes.
Like your idea of watching funny movies, I love a good laugh.
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Hi girls,
A little confused, I'm ER-negative, PR-positive, Her2-negative. I'm not triple negative but because I am ER-negative (even with the PR-positive) my onc says I'm not hormone receptor positive either. Don't quite know where I fit in. 2 lots of chemo now and nothing seems to be working to shrink this tumour. Have any of you taken Xeloda (that's what I'm on at the moment) if so did you find it slowed or stopped the spread? Have any of you found a treatment that's working for you? I'd like to hear some good news stories.
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My BC was also ER- PR+ (60%) HER 2- . I am 57 and already through menopause. My Mo said I will be on endocrine therapy after finishing chemo. I don't know which one though.
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I was originally diagnosed as triple negative at age 30. No family history and tested negative for brca and other genes linked to BC. I had my biopsy retested by John's Hopkins and it turns out I'm 50% PR+. My onc advised I'd benefit from tamoxifen. I'm hoping side effects are minimal.
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MonkeyMom and Alicethecat... I am also one of those rare ER-, PR+, and HER2+! I was just diagnosed in January 2020. Since this is an aggressive cancer, they did TCHP chemo first. After six rounds, I had to wait a bit, then have surgery. My primary was occult (even a 2nd opinion at UNC- Chapel Hill Cancer center did not find it), and nothing in my breast area was ever found; only one cancer laden lymph node 3cm across in my right armpit.
I chose to have surgery only on the lymph nodes. That surgery was this past Friday, and we're waiting on the pathology results. (Not all were removed.) The surgeon said everything looked and felt fine, but she sent off all of the tissue to have it thoroughly checked, hence the wait. (The affected lymph node shrank up to a "normal" size! A radio frequency tag was put in it earlier in my chemo treatment, so the surgeon would be able to find it later.) If there is no residual cancer found, I will continue the Herceptin and Perjeta until March 2021. Radiation will begin in August, if all goes as planned.
I'm curious how everyone with this cancer combo is doing. All of the doctors and specialists who were involved in my diagnosis said that the combination is unusual, and even more so with an occult primary.
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Hello MMinNC
Well done for getting through a lot of the journey already!
In case this helps, you'll see from my signature that I had the same markers as you way back in 2012. Going strong. No spread or recurrence.
Hoping for the same for you.
Alice
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I just found this thread so I hope there are some of "us" still around. I was diagnosed with IBC in January, ER-/PR+/HER2-. I am being treated as a triple negative, even though my PR is 12%. I suppose the aggressive treatment has more to do with the Inflammatory diagnosis, and I'm in the midst of Taxol chemo that will be followed by AC, mastectomy and radiation. I suppose the "final" hormone determination will be on the biopsy of the breast tissue after treatment, but I'm wondering if there will be any suppressant treatment for me.
I have not had this discussion with my MO yet as I believe it is premature at this point. I'm glad to see this thread because I'd begun to believe I was the Lone Ranger.
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