TRIPLE POSITIVE GROUP
Comments
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This thread is specifically about triple positive patients. So I am posting the info about a very current review that clearly points out that menopausal status is not very well determined by providers.
The point is that accurate menopausal status has a LOT to do with whether to take aromatase inhibitors or tamoxifen, as well as to do with whether or not favorable conditions are present for cancer.
The common basis used by OB-Gyns and others is 12 months without periods. This is not truly accurately definitive, even though that is often not made clear to patients, who hear that rule of thumb and apply it to themselves.
Studies have demonstrated that some women are not fully menopausal even up to age 70 or more, whether or not they are still having periods.
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SpecialK -- just sent you a pm.
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shore - sent you one back!
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Alaska - Thanks for posting that link! It looks like a great article and I will read it this evening. I think it is a very important issue.
From the article: "Moreover, in case of chemotherapy induced amenorrhoea (CIA) AIs may promote recovery of ovarian function which could lead to therapeutic failure and even to unwanted pregnancy [12]. "
I had some recovery of ovarian function when I switched from tamoxifen to the AI (I could tell because my hot flashes were greatly reduced). Now that I am back on tamoxifen my hot flashes are also back to nearly their usual frequency.
Dx 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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The article is available by purchase at this time, so you might try and see if your public library or your practitioner can get a copy for you, which is probably what I will try to do too.
The main reason I posted the link is because it identifies and suggests possible interim solutions to a concern that patients are usually not aware even exists when it comes to figuring out what therapy applies best to each person.
The issue itself also brings up a question as to which major therapies fit each individual best as part of dealing with menopausal status, and provides some food for patient understanding and consideration about the goals of different therapies.
For example, how relevant is it for older women to do chemotherapy in comparison to younger women? Would ovarian ablation actually achieve more complete reduction of ovarian influence for some than doing chemotherapy? How important is it to achieve and maintain menopausal status, in order to reduce the conditions favorable to cancer?
All of that is tied to having a more definite way of measuring and defining when a woman is or is not truly fully postmenopausal. And as yet, being able to do that is still an elusive goal that our providers have not achieved, even though they so often casually throw out the conclusion for us, "You are now menopausal.", and we don't know any better so we tend to accept their conclusion as fact even though it may not be true.
A.A.
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Hi ladies,
There are several combinations of drugs used to treat breast cancer; CMF is one of them. Specialist Team discuss which combination is best for any type and stage of breast cancer.
CMF is a combination of three chemotherapy drugs: cyclophosphamide, methotrexate and 5 fluorouracil (also known as 5FU). CMF takes its name from the initials of these drugs.
As I know this chemo was practiced about 1990 and later before use of taxanes and herceptin, nowadays sometimes for triple neg. or patients allergic to taxanes.
Best Usha
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Give it a while Sol and you'll barely notice it....well, I do but most do not!
Kind of sad, loosing my attachment soon. RIGHT!0 -
Sol: Where are you in Cali (assume you are in California since you mentioned Kaiser)...my daughter lives in So Cal.
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Daughter is in Tustin! Burps are kinda/sorta normal! Not sure I know what antifreeze tastes like.
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Sol: Are you keeping up with the 100 ozs of water a day? That really does help! How are the caps working for you. I used the EGG caps and they worked for me.
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Hi you guys..
I'm 35..finished my chemo back in March....had BMX with DIEP...had PCR to chemo, and am now on Tamoxifen.
I think I got my period back on Sunday. I am still having flow, although it's light. I should have known something was up as my hot flashes stopped a few weeks ago, but I didn't notice anything like ovulation pains so I wasn't sure.
I actually went to the gyno last week for my annual, and he ran the hormone panel but we don't have those numbers in yet.
My question is, being triple positive, how bad is it for me to have my period again, if this is indeed what is happening? The gyno said it could just be a random one here and there..not neccesarily the return completely, but I'm obviously freaking out.
My chemo was 12 weeks of Taxol + H and then 4 times FEC + H every 3 weeks. My period stopped after the first week of Taxol. Also, I have THREE herceptins left!
I'm only 35 so taking my ovaries scares the bejeezus out of me.
I turn to you guys for help!
Thanks!0 -
Hi melster, welcome - Another option is using medication to suppress ovary function.0
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Melster this is something you need to discuss with your onc too. There are plenty of women that are just hormone positive, premenopausal and scored low on oncotype test and therefore didn't do chemo. They still have their periods and are just doing tamoxifen. Some that can't do tamoxifen are doing ovary suppression with ESD (estrogen sucking drug/Aromatase Inhibitor). Don't freak. Also what your gyno said about some random periods may be true.
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Melster, one of tamoxifen se is endometrial hyperplasia which is a thickening of the uterine lining. This will manifest as bleeding/periods if you get high enough progesterone levels to drop suddenly so as to cause withdrawal bleeding. This bleeding may even prevent endometrial cancer because it will put a stop to unopposed estrogen effect on endometrial proliferation. Consult with your gyn. She might just need an ultrasound.
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Hi Melster
I am a triple positive whose periods returned just 3 months after my last TCH treatment (Taxotere, carboplatin, Herceptin). I was 41 when I was diagnosed and am now 42 (today actually!)
Like you my first sign of a return to periods was my hot flashes disappearing. My periods still arrive every 5 weeks but they are light. I do get very mild flashes in the evening and my last hormone testing showed I was perimenopausal.
The ladies on this board are both lovely and highly educated on all matters related to Bc, so you have come to the right place, along with consulting your medical team as well of course.
I have struggled with this decision and have decided to remain on Tamoxifen for now. I just dont want to face instant menopause just yet. Tonlee has done alot of research on studies about the survival benefit of having an ooph.She did find studies that show a survival benefit, but there are also studies out there that show no statistical significance. Until an ooph is recommended as standard care I have decided to wait a bit longer and review my situation regularly. My concerns are bone and heart issues. These are supposed to be worse for women who are 35 or under going through early menopause (but dont quote me on that) I am only telling you where I am at with this issue. Its a personal decision. Good luck with your eventual decision. You will hopefully find that other ladies chime in. Also, if you look back at previous posts, this issue has been discussed before and Tonlee shared her research with links.
Liz
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For all the USA girls....fyi via Livestrong....
"
Affordable Care Act Now Covers Well Women Visits
Aug 01, 2012 by Brooke McMillan
Starting today, all insurance plans purchased or renewed as of August 1, 2012 on will be required to cover the following preventative cancer screenings without charging a copay or counting towards a deductible:
Well-woman visits: This would include an annual well-woman preventive care visit for adult women to obtain the recommended preventive services, and additional visits if women and their health care providers determine they are necessary. These visits will help women and their health care providers determine what preventive services are appropriate, and set up a plan to help women get the care they need to be healthy.
HPV DNA testing: Women who are 30 or older will have access to high-risk human papillomavirus (HPV) DNA testing every three years, regardless of Pap smear results. Early screening, detection, and treatment have been shown to help reduce the prevalence of cervical cancer.These provisions join a host of others, including mammograms and BRCA genetic counseling, that will go a long way to saving the lives of women affected by cancer. Removing the burden of cost will increase screening rates and reduce late stage diagnosis of cancer resulting in fewer deaths and less need for invasive treatments."
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Hello everyone
I am 42 today. I wanted to post to show what a difference a year makes. On August 1st 2011 I was celebrating my birthday with a glass of champagne, surrounded by my family, but bald and still with one TCH to go (on Aug 21st).
Today I still have reduction surgery to face in November, but I love my new hair and am getting there. Some days are easier than others, but it does get better.
Update on latest panic: My recent breast pain has gone as my period ended. Panic over.
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jackboo - Happy Birthday!
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Jackboo Happy Birthday. Ha ha bet you didn't expect that
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jackboo - Happy Birthday! Glad to hear the pain is gone, that's a nice present.0
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HAPPY BIRTHDAY JackBoo!
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Thank you for responding and happy birth Jackboo!
My gyno called and I am not in menopause according to my levels, however, I also did not ovulate. He wants me to do a sonogram just to check what's going on in there. I haven't seen the results yet, but he is going to fax them to my onc for her review as well. He said what bcbarbie said about it possibly just being the lining that was built up and is now shedding. But he did say I have circulating estrogen, which of course, freaks me out. Just pray that Tamoxifen is doing it's job, right?
My onc is NOT surgery happy and would not even dicuss ovary removal the last time I asked her. I am not sure if it will change with this new information. Although she has told me time and time again that I may well come out of chemopause etc.
Just when I was starting to see the light at the end of this year long tunnel, this threw me for a loop. I'm having a hard time today..just wish I had more answers and less questions.
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melster - you would still have circulating estrogen with Tamoxifen, it is not an estrogen suppressor. The reason it is given to pre-menopausal women is to allow the good things that estrogen does in younger women (protect heart and bones) to continue to happen. Tamoxifen should be blocking that estrogen from the receptors in your cells.
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Yes, I know that about Tamoxifen, it just still freaks me out, because all I can do is pray that it is working.
I was kind of glad to be in chemopause because it meant no extra estrogen hanging around. But it is what it is, I guess, and at least I'm not having hot flashes right now, right? I was just looking forward to coasting for a bit and not having to think about all of it since I'm finally nearing the end of the Herceptin. Oh well. It's always something!
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Happy Birthday jackboo, and thanks for the encouraging update!
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Happy Birthday jackboo!!
I am also an August 1st baby so turning 38 today!
Melster: My periods also retuned 2 weeks ago. Made me pretty nervous being triple positive. I got 3 1/2 months out of chemopause. As an afterthought I too realized that my hot flashes had melted
away recently. I still have 2 more rads to go but Mo says I get a 2 day break then I start Tamoxifen this Monday. Went to see my OBGyn yesterday to discuss and she said same thing. Wait and see where Tamoxifen takes me. She said I may have regular periods, no periods, or something in between. Everyone is different. Hope it helps to know we are in similar boats floating along...0 -
Happy Birthday to Jackboo and Momo.....and Happy Yorkshire day to Jackboo....
So sorry so many women are facing this battle at such a young age.....
I faced other misfortunes in my 30's and 40's.....We all have our share of trouble and woe.
So far, however, this bc battle has taught me more valuable lessons than all the rest of my mistakes and troubles combined .0 -
Re tamoxifen - The question I have is whether there is a certain level of circulating estrogen that is too much for tamoxifen to be effective. Maybe tam works well with estrogen levels up to a certain point but above those levels becomes less effective. I think TonLee touched on it earlier (f I remember correctly) when she described how when there are high levels of circulating estrogen we can't be sure that tamoxifen would block the estrogen receptor on breast cells before the estrogen could get to it.
TonLee - How are you doing?
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Momof2inMe....weird! How long did yours last? I have the results in my hands now and according to the documents, I have not ovulated. And my TPO is severly elevated. Fun times!
Happy Bday to you too, by the way!
Perhaps we can keep up with one another via PM to see how everything shakes out. Tamox has been ok for me so far, until this weirdness!0 -
Jackboo and Momo, Happy Birthday!
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