Changing to AI/OS from Tamoxifen after reviewing SOFT study?
Comments
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How is it determined if you are in chemopause or the real deal? I had my last period after my first chemo tx, that was in FEB '14, I haven't had one since.
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I was 43 when diagnosed and now am 44. I haven't had my period since my first chemo. I just started Tamoxifen a week ago. I asked my MO about an OS. He doesn't want to put me on this because of the risk to my heart. He did suggest I ask the Mayo Clinic MO who I saw originally for a second opinion. I am seeing the Mayo Clinic MO this Wednesday. -
Tangandchris, I believe there is a blood test that can determine if the menopause is permanent. My last one was in August 2014 and I have been having hot flashes since then. Will find out this week if it is permanent for me
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tangandchris-
My oncologist has labs done - Estradiol, LH, & FSH . I was 48 at diagnosis but not approaching menopause. My last period was a little over 3 years ago - but because my lab work does not have me as menopausal, I am still taking Tamoxifen.
Two years without a period seems to be the starting point for suggesting someone is fully in menopause following chemotherapy. From reading on BCO, I have found it appears there are some different approaches with physicians and specialists declaring full menopausal status.
I've been thinking of starting a thread looking for others that are similar to me.
Diana
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I will ask my MO about this in April. I don't have hot flashes much at all anymore, I went thru horrible hot flashes during chemo and to be honest I felt as if my ovaries were just dying during that time. Hot flashes and night sweats that I would wake up drenched in sweat burning up, then get cold because I was wet from the sweat.
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This is such an interesting thread for me. I was diagnosed this past January at the age of 39 with IDC - Premenapausal. I am only 2 weeks post surgery and had an appointment with the Oncologist last week. The prescription was for Tamoxifen for a minimum of 5 years however I am definitely open to reviewing the study and hearing what others are looking into and what side effects are presenting themselves. I understand that these medications are all necessary however I am also wanting to place quality of life in high regard.
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cindyk. Low risk patients such as yourself would probably not be recommeded OS + AI as the risks would outweigh the benefits. A friend of mine is treated at the same cente as i am. Shes only 40 and was told tamox alone was fine due to having such a low recurrence score. AI+OS was recommened for me because of my higher risk status so the absolute benefit is greater for me. As was stated before on this thread the patients who benefited the most had chemo ( high risk). Hope this info helps
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Thanks Rozem, I believe that is the same information that my Oncologist said as well - I briefly remember her discussing the OS + Al and informing me that Tamoxifen would be more ideal and would produce better results. However at the first appointment there was so much information that I am trying to recall and process now. Overall I am just afraid to start the Tamoxifen - the possible side effects scare the bejesus out of me.
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cindyK - ive been on tamox for 3 years and doing fine on it...in fact I think most of my SE are from the menopause itself (brutal hot flashes, bone pain, memory issues etc). Im starting Femara soon and terrified as well...better the evil you know I say but I want to at least give it a try.
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CindyK- Tamoxifen is no fun, but, cancer is less fun. The SEs are different for everyone, and mine have changed over the last 16 months as well.
I am easing off the effexor that i was taking for the SEs, and once I am done with that, I will start chemical OS, and if I can tolerate it, switch to the AI. I hope I tolerate them both well, as I want any weapon I can get to fight with. Once I move onto them, I will keep you all updated.
Love seeing the activity here! Thank you everyone for sharing- hope to see more!
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I was 43 at diagnosis and have been on tamoxifen for a little over a year. No periods since Taxol only 1 suprise one summer of -14 . The plan is to keep track of my hormone levels and switch in 2-3 years. So far my hormones pre menapaus and because there are no bleeding Im having a dnc in a couple of weeks
I also have cysts on my overies (no pain) -
Hi Everyone,
Thank you for starting this interesting thread! I was 42 at diagnosis of IDC stage 2 back in September. Just finished TC and now just on Herceptin for the rest of this year. I have not had my period since the day of my first chemo, which was December 4th. I am hoping that the chemo killed the ovaries, but we will not know for some time. My next decision is how I am going to continue systemic treatment. With my PTEN mutation, i am at a slightly higher risk for endometrial CA. However, I also very much value my quality of life and am not ready for all the physical changes that permanent menopause brings. As an OB/GYN practitioner, I saw that so many of my patients struggle with the menopausal symptoms. I have also reviewed the data from the SOFT trial and at this time, I am thinking of taking the more conservative route - tamoxifen for 3 years and then OS+tamoxifen. I would like to protect heart/bones until my body is naturally ready for menopause.
On the flip side of this decision is the reality that I do have higher risk of recurrence with +lymph nodes, genetic mutation, etc. However, I try to always take a step back and look at the big picture. Yes, I want to be around for a long time. However, I want my life to be full and enjoyable. I figure close monitoring, annual screening, etc. will allow me to take the conservative route and just 'watch and see'. This is not a definite decision yet, but it is how I am feeling today.
Akitagirl
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Hi everyone,
Just an update on my OS + AI journey. My second month on Zoladex (Goserelin) is almost over and I go in for my 3rd shot tomorrow. Im still only on Tamoxifen and will switch to an AI when I am confirmed to be post menopausal. It sure seems like it because my menstrual cycles have stopped. I do not have any noticeable side effects yet however. Pretty much the same quality of life as I did before diagnosis. Hopefully it stays this way after the 3rd shot. I would be happy to hear from more people going through the same journey as me. I have only always heard such horrifying things about Zoladex, and I might be speaking too soon but as of now I am doing okay.
Ann
PS : Just to give some background I am 29 years old and resumed ovarian function after chemo.
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hi all
quick update, Ive been on tamox+OS for almost 2 years. I just switched to Aromasin last week. Horrible. I had vertigo/dizziness the 4th day in. I am taking it at night now and seem to be ok but I am exhausted. I am hoping I can stay on this and the SE lessen but right now I am missing tamox.
ann273 -its really hard to know whether its the zoladex shot (chemical) vs menoapause when it comes to SE. I do know that when I stopped for a few months I felt great...but then I got my period so I think I felt great because I had hormones again! all my SE were menopausal and or tamox- fatigue/mental fog/achey joints/wicked hot flashes. I honestly don't know how to accurately pinpoint where the SE are coming from!
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I was 39 and premenopausal when diagnosed. Had neoadjuvant chemo and have been on tamoxifen about 6 months. Recovered my cycle while on tamoxifen. Met with my onc yesterday and she recommends switching to OS and AI. I asked about having an oophorectomy for the remaining ovary that I have and she said I could do that in lieu of the OS - I'm not sure why she didn't suggest that. I had a zoladex injection yesterday to see how I tolerate the side effects. Not a pleasant injection and not something I want to do every 28 days for the next 5 years! I dread having surgery again but I think I dread that less than the zoladex.
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Just an interesting side note....I had a followup with my BS this week. He's considered to be one of the best in the south and tries to keep very up to date on all the latest info. I've been following this thread since I'm on Tamoxifen and had a hysterectomy 2 months ago. I am 51 and was perimenopausal with sporadic periods at the time of surgery. I asked him what he though of the SOFT study and the idea that now that I have no ovaries should I consider an AI. He said that he strongly recommended staying on Tamoxifen when possible because the AIs only decreased my risk recurrence by 2-3% but the muscle/joint pain side effects would increase tenfold. He said he has had alot of patients ask to go back on the Tamoxifen after a go with an AI or they actually refuse anything at all because the side effects are too much to handle. My MO had said in the beginning of this journey that I would do 5 years Tamoxifen then reevaluate and 5 years of T or an AI. He's sticking to that even after my hysterectomy because he said since I'm doing pretty good on the Tamoxifen he'd rather me stay on it for now. More or less the same opinion as my BS.
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Thanks lala1....makes me good about my choice to stay on tamox..... -
Hi All, I am 51 and apparently still premenopausal, I was shocked to discover. So. I have had a bad time with the cognitive side effects of tamoxifen and so I am about start going SOFT! I will be scheduling my first shot next week and starting an AI. I am curious to see how it goes... BTW, my MO did NOT want me to make this switch and she expressed deep deep doubt about the possibility that tamoxifen could possibly be having the effects that it was. She was convinced it was simply the effects of menopause. I told her I doubted it since I stopped taking the tamox and felt much better after two and a half weeks (back to normal). Anyway.... getting ready for a new experience.
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Hi everyone. Thought I'd share my story in case someone finds this thread looking for different perspectives/cases. I was diagnosed 28 yrs old and am ER+, so I fall into that category in the SOFT trial that showed a benefit for OS + AI. However, my onc is keeping me just on the tamoxifen. He spoke with many of his colleagues at top cancer centres and he is extremely up-to-date with all of the research, and he does not feel that the results are convincing enough to warrant the additional side effects and risks of putting my body into menopause at such a young age. He said if I had been lymph-node positive (which I was not), he might lean more towards the new protocol, but since I've done chemo, Herceptin, and just about everything else, and am Stage 1, he feels my current risk of reccurence is fairly low and the benefits are not big enough for me with ovarian suppression. My onc also noted the sample size of women <30 was fairly small, and HER2 status was not factored in either.
At first, I felt uneasy about it, but the more I read and the more I spoke with him, I decided I'm comfortable with that decision, at least for right now. I am already almost 2 years into the tamoxifen.
Anyway, all that to say that it's not a clear-cut decision and it's important to weigh all the factors and do your research before jumping in to a new treatment regimen. Talk to your doctors, ask for second opinions, and do what you feel is right for you. Good luck to everyone!
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My MO is asking me to consider switching from tamoxifen to OS w/AI. The biggest reason is that my second cancer developed while I was on the tamoxifen. After about a year, all my SEs from tamoxifen have passed. (I take biotin to help with the hair loss).
I am concerned about the SEs of OS and AI, but will probably give it a try since I don't want a recurrence. Especially since there is no breast left, and the cancer would have out find a new home!
One concern I may not be able to overcome is cost. I am on a high deductible health care plan, which means $2400 out of pocket before insurance kicks in. Anyone have any idea what the costs are?
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Steph, I switched from tamoxifen to anastrazole and they cost exactly the same. Very cheap because it's a generic. My MO likes exemestane better, but that one costs too much. But, I am postmenopausal now so that's all I take. Adding the Zoladex would be the question mark. I looked it up on "GoodRx" and it is in the $470-500 range without any insurance. That would certainly not be even remotely possible for me. You'd have to check with your insurance and see if, and how much, they would cover.
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I am 49 but still premenopaual, and my Dr. is only recommending Tamoxifen, I don't want to take Tamoxifen so I thank you for this info, because I will mention it to him. I was planning to not take anything and only do diet, exercise and soybeans.
Lisa K IDC Tax/Cys
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Here is a link to the NEJM article on the study: http://www.nejm.org/doi/full/10.1056/NEJMoa1412379
the article here on BCO: http://www.breastcancer.org/research-news/aromasin-plus-ovary-suppression-better
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From what I can tell, this SOFT study met its primary endpoint as of early 2014. I assume trial investigators will continue a long term follow up of patients, right?
I'm still awaiting the results of the subtype analysis between IDC versus ILC.
As a side note, for those with ILC, the real value in this data may not be known for another 5+ years, since ILC tends to have late recurrences (compared to IDC).Finally, are there any other Phase III clinical trials to watch that might be useful for the early stage, hormone positive, pre menopausal cohort?
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I was 47 when I started Tamoxifen. I cannot tolerate the side effects. When I go off the Tamoxifen, I get periods. So, the doctors want me to do OS plus an AI - for how long is not known. However, it is hard to make this decision as I am not sure what the side effects would be. I will look at the research.
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This is a great thread! Thank you. My question for all of you is: if you were already in chemopause, did the ovarian suppression change anything for you? Did the hot flashes or other menopausal symptoms increase? I'm kind of leaning (before having met with the onco gynecologist to discuss it) toward oophorectomy since I wasn't planning on having kids anyways. I seem to get a lot of side effects from medications generally and heal well from surgery so thought . . . what the heck. But, I'm not 100% certain. If you have had the oophorectomy after being in chemopause, how was it?
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Hi knitting,
I went into chemopause at age 40, and had hot flashes and night sweats during chemo. Two months after the end of chemo, I had an ooph. It was the easiest surgery I had, and because I had already gone through chemopause, I did not have any additional side effects. The hot flashes and night sweats subsided a few months later. About 2 years later now, and I do not have many side effects other than some joint pain from Femara that happens early in the morning when I wake up (due to Femara) but goes away within 10-15 minutes.
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knitting I was in chemopause, then had 1 period and started ovarian suppression immediately after that. My hot flashes are definitely worse with the ovarian suppression than chemopause, but not so awful I can't deal with them.
Kendra
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Thanks everybody for sharing. I finished chemo two weeks ago and just had my first zoladex injection. I had very active ovaries and kept getting my regular period during chemo it was only mid taxol that they stopped so my onc said she wasn't taking any chances of it coming back. Blood tests confirmed I am in menopause. I'll be starting aromasin after radiation and because of my positive nodes and age of 32 at diagnosis my onc said the study results couldn't have come at a better time. I have some hot flushes but not too bad and probably too early for the zoladex to have kicked in I had the three month implant. All the best to all of you!
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hi everyone,
Here is a news article that came out today about oophorrctomy and breast cancer; pretty good read.
I have stared tamoxifen and am waiting to start the ovarian suppressant as apparently it is not yet covered by the government in Canada (not too sure if Canada or just my province). I am already in chemopause and get hot flashes only at night, they aren't terrible just don't get a good nights rest.
I want to see what it's like to be completely in menopause before making the irreversible decision to have them removed.
http://www.cbc.ca/m/news/health/breast-cancer-surv...
teri
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