Changing to AI/OS from Tamoxifen after reviewing SOFT study?
My MO just presented me with the full SOFT study, and suggested that changing to an AI + ovarian suppression from Tamoxifen would be beneficial to me. (premen, ER+) I am seriously considering it, but trying to do as much research as possible before I decide. I was 37 at dxm 39 now, and was in chemopause and tamopause for a while. Have been taking Tam for 15 months now.
Has your MO also suggested it?
I want this to be a thread for those who are thinking about it, have questions, have answers, or are actively in this treatment to help us all understand how to navigate this decision.
The SOFT study was only for 5 years, so the long-term outlook is still unknown. Concerns about bone loss, cardiovascular issues, as well as vaginal issues and plain ol' cosmetic issues are common, and warranted.
The combination of so many AIs and OS options are a bit confusing as well.
Any input is appreciated and I hope helpful to anyone in the same situation.
Thanks!
Edit suggestion from JohnSmith :
- It would be awesome if you could add your age when you comment (if it's not already in your signature).
- Anyone considering the switch from Tam to OFS+AI should click on "Add to My Favorite Topics" to track replies.
- Since the SOFT / TEXT trials were aimed at pre menopausal women, it would be ideal to hear from them, or even better, those that participated in the study. No one discounts the advice / stories from post-menopausal women... it just resonates more from the pre-menopausal perspective.
Comments
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Hi Jwoo,
My MO did mention the SOFT trial to me and we will be discussing at our appointment next week. I still have one more round of chemo before needing to make that decision. I feel for myself that maybe the best route as I am only 30 and have 100%ER+ breast cancer.
I will be looking at an ovarian suppressant to see how my body will handle menopause, if it is tolerable I will then look at an oophorectomy. I don't want to make any permanent decisions without knowing all the benefits/consequences.
I though the SOFT trial was done over 10 years? I could be wrong.
Teri
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Hi JWoo,
I just switched to OS + Tamoxifen from just Tamoxifen. I was on tamoxifen alone for a year and after the soft trial results, I made the decision to go on Ovarian Suppression. I took my second Zoladex shot a week ago and I am doing okay for now. My onc said he will switch me to an AI once we are sure that I am in menopause. I thought a lot before I made the switch since I was very worried about the side effects. Im only 29 and menopause is a bit drastic at my age. But, my onc was very insistent that I go on OS + AI after the soft trial results. I am also stage 3C so I understand his concern. He seems to really believe that this is a significantly better option than tamoxifen alone (and he isnt one who insists so much, kind of lets you make your own decision).
A month and some days in, I dont feel any different than I did on tamoxifen alone. I dont know if it takes longer for side effects to start kicking in. I just pray that I get lucky and dont have them (wishful thinking I know
) I would also love to know others who have been on this longer and can share their experiences.Ann
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Thanks for chiming in ladies!
I am sorry that BC hit you so early in life. Seems to be happening more and more though, so I am really glad they finally did this kind of study.
I am absolutely considering it, but you are right, it is a big decision to put yourself into menopause (at any age!)
Please post updates when you can, and share this thread with anyone else that may need or have info.
- jeni
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I'm 35 and do ovarian suppression + tamoxifen. At this point my MO does not recommend that I switch to an AI, mainly because of the bone loss issues, etc with AIs. I already toe the line of Osteopenia so we don't really want to add another drug that can affect bone density. But we shall see as time goes on and the SOFT trial concludes the next 5 years. For now I'm comfortable with the treatment course I'm on.
Kendra
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Thanks Kendra- yes, if you are already in that zone, I can completely understand staying on Tam. What kind of OS do you do? and what (if any) side effects have you had from that?
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I'm officially post menopausal at 49. I've been on tamoxifen for a year and three months and have done great on it. My onc now wants to switch me to AI, which I'm not thrilled about due to the worse side effects he mentioned. My previous onc, who quit practicing, said she'd keep me on tamo for 10 years as long as I was tolerating it well, due to the added benefits it has on your bones and heart. I will read others thoughts and think about what I'm going to do
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I do monthly Lupron shots and the biggest side effect I have is more hot flashes. I already was getting them from chemo-pause and Tamoxifen but the Lupron really ramped them up. Mine are worst at night and my MO prescribed gabapentin for them and it has helped. I still have them but not as frequently. I have some vaginal dryness that is not pleasant but it's not horrible either.
Kendra
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Hi,
I am not on any OS as my MO wasn't so keen on switching me as of yet in December when I last saw her. She said that there is a lot of data on the benefits of Tamoxifen alone. Not sure if she will decide to switch me in June.
I have been on chemopause since August 2014 and on Tamoxifen since September. The SEs mostly hot flashes, night sweats and vaginal discharge (sorry TMI) haven't stop. So not sure if the menopause it's permanent. I was dx at 33 (coming up to my 1 year cancerversary!!!!).
I have been thinking about taking the ovaries out but not sure 100% yet.
Did you ladies have your period back
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Hi!
I was originally supposed to do Tamoxifen, but after the SOFT study results came out, MO suggested OS + AI. I am doing Zoladex and Aromasin, and haven't really noticed much in the way of SEs. I had already been in chemopause since 9/14, and had already been experiencing some mild "warm flushes." Those have continued, but nothing new has surfaced except for some vaginal dryness. I'm taking calcium supplements for the bone issues.
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Great thread. Well written. A few things to add.
- It would be awesome if you could add your age when you comment (if it's not already in your signature).
- Anyone considering the switch from Tam to OFS+AI should click on "Add to My Favorite Topics" to track replies.
- Since the SOFT / TEXT clinical trials were aimed at premenopausal (preM) women, it would be ideal to hear from them, or even better, those that participated in the study. No one discounts the advice / stories from post-menopausal women... it just resonates more from the preM perspective.
My preM wife was diagnosed at age 45 and the current interpretation of the SOFT trial results presented in December 2014 is that Ovarian Suppression (OS) improves Disease Free Survival (DFS) for the younger (<35 age) patients and the Chemo patients (Lymph Node+, high risk).
However...
Some are awaiting the results of the SOFT study in regards to subtype (i.e. Ductal vs. Lobular). As science continues to show that IDC and ILC are different, it's important that clinical trials stratify these patients and analyze patient outcome.
I emailed the lead researcher in Australia about this. Theoretically it could change treatment if results show profound differences among the subtypes. Her response was that they have not analyzed the patient outcomes in the trial (or in the TEXT trial) according to subtype. Since Lobular accounts for up to ~10-20% of the trial data, this type of analysis could be important. I'm told the current timeline for this analysis would not occur until after central review of pathology samples has been completed. Who knows when that will happen…[I will edit this post if/when the subtype results are announced]
It's probable that the subtype analysis won't reveal anything clinically relevant between the two subtypes, but it would be interesting to see if one performed better by doing OS.
Some suggest doing OS first (Zoladex or Lupron shots) and not ovarian ablation (oophorectomy), if given the choice. That way you can gauge the side effects (SE's). If the SE's are too much, it's easy to stop the injections. If you do ovarian ablation, it's permanent and there's no turning back, thus complicating matters if SE's are unbearable.
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John Smith, that is an interesting post. I'm in a similar boat as your wife. ILC, 41 at dx, lymph nodes clear, grade 1, oncotype 7. Mx, rads and now tamoxifen. I just had my 1yr follow up appt with the MO, and asked about the SOFT trial and OS. He said he didn't see any reason for me to add OS now, but that he's definitely watching for further results (I also asked about the ILC aspect).So, for me, for now, I'm comfortable not doing OS, but will be watching. I'm also now three months without a period, which I guess is not unusual, but I still haven't really gotten any of my docs (MO or ob/gyn) to tell me what this means in terms of what my ovaries are doing. I've noticed an up tick in the # of hot flashes in the last 3 months as well -- not really problematic, but more prevalent than most of the past year.
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Lolis, my period came back 4 months PFC. And I started the Lupron shots immediately after that so haven't had another one since.
Kendra
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Thanks everyone for your participation and information!
John- added the suggested points- thanks! Interesting info about the subtypes. I hope they publish that info soon. My MO definitely suggested suppression first, to try things out.
Lolis- I got my period back last October, after not having it from the beginning of my chemo. And it all arrived at once! Since then, they have become regular. Since I am no longer in chemically induced menopause, my MOs line of thought is that the results of the SOFT study show that I would benefit from a change.
Hearing from postmeno ladies is great as well, as most are on AIs already and can share that experience. The more info, the better!
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I was diagnosed at 41 with stage 1 grade 1 IDC oncotype 13. My MO put me on aromasin + zoladex. I have been on it for 3 months with almost no side effects. I occasionally get a warm flash that lasts a few seconds but that's it. My MO thought it was old give me a couple more percentage points than just doing tamoxifen if I could handle it.
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This topic is very confusing to me to be honest. I was 39 at dx and have not had a period since 2/14 after my first chemo tx, during chemo I had horrible sweats and hot flushes and have wondered if I am ever going to have a period again. I've been on Tamox since November of 2014 and have struggled with some of the SE's. I'm Stage 3a with 6 nodes IDC ER and PR positive.
I didn't realize that some were taking OS and Tamox, isn't that the function of Tamoxifen? How recent is this study?
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hi everyone,
I'm 31 and am at 3 weeks post surgery. I'm waiting for the results of my oncotype test and right now starting my 2nd round of egg harvest (I'm single). My oncologist did mention that OS+AI will be the recommended option for me given that I'm <35 years old.
I have to admit I'm still doing my research about this but will most likely go with my oncologist's recommendation. I'm keeping my fingers crossed I won't need chemo and can jump right into this protocol after my egg retrieval so I can share my experience.
Cheers
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I was 36 at DX, did tamoxifen for a year. Had hot flashes and vaginal dryness while on tamoxifen. Had my ovaries out in the beginning of february because of BRCA1+ and started exemestane, since as my MO put it "why not". So I've only been on AI for a month and so far hot flashes seem stronger and my hair is falling out (doing Rogaine for the hair).
I am interested what the side effects are as far as doing the actual Aromasin versus the generic exemestane? have any of the younger women tried both or switched from one AI to another?
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tangandchris, the recent SOFT trial results show that OS + Tamoxifen has better results (atleast in 5 years after diagnosis) than Tamoxifen alone. OS + AI shows even better results than OS + Tamoxifen. A lot of the high risk patients are now shifting to Ovarian Suppression after these results were published in December '14.
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I was diagnosed at 39, and am currently just a week past surgery, but I met with my MO for the first time yesterday and this is the course of treatment he is leaning towards:
1. Tamoxifen - see how I do
2. OS + Tamoxifen - see how I do
3. OS + AI - see how I do
4. Ooph + AI
I am ER+ 99%, PR+ 98% (HER2-). Doc seems pretty confident that because my BC is so hormone-hungry, this is the right path. I just don't understand the need for the Ooph. Why can't I just stay on OS + Ai for 5 years? Maybe I can - I will discuss this with him at my next appt; the question didn't occur to me until afterwards.
I am still awaiting oncotype to see if chemo (TC) is in my future, and I have to get through rads either way before any of this starts, so plenty of time to think about it.
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I've just come from my Oncologist and I have done everything backwards.. I was diagnosed last year at age 53. As I was pre-menopausal I have been having Zoladex injections for approx 9 months and taking Femara/Letrozole. Unfortunately I started having terrible side effects. Not just the joint pain which I could handle, but my heart and kidneys started misbehaving, my blood pressure was so high the machine couldn't take it, it got up to 193/90. So my Oncologist suggested I stop the Femara/Letrozole which I did a month ago and I feel so much better. I still have to go another month without treatment to see if it could be the Zoladex injections. In a month she suggested I start Tamoxifen. So I am a bit upset because I had heard that AI's are much better for Lobular, but I couldn't have gone on the way I was and my heart problems were really frightening me.
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Hi ladies,
I was 39 at Dx, and did chemo, so my MO and I decided to switch from tamox to OS/AI when SOFT reported in Dec, esp when my estriadol levels went back up after chemo. We are on a transitional path - I started Zoladex end January and will do OS plus tamox until we are certain estriadol levels are post-meno, then switch to aromasin. That said, I also recently failed a bone density test, so may stay with OS plus tamoxifen. I need to think on that a little bit.
So far I have found the Zoladex tolerable. No real SEs beyond the chemopause ones (hot flashes, night sweats and Sahara-like conditions in the nethers). I also take gabapentin for the hot flashes - helps some.
Good thread!
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I'm 42 now. I just got the results of my recent hormone blood work and it shows I'm now premenopausal again. I'll have my dexa scan next week and then start OS + AI the following week.
My MO was ok with me being on Tamoxifen while in chemopaus. Now that I've come out of it so quickly she wants me to go this route.
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I am 46, ILC and premenopausal. No chemo as onco test was 12. I finish my rads next week and have follow-up with MO Friday. I will definately discuss this study with him and see what his thoughts are. My first consult was in January for onco results and he said after I would be prescribedTamoxifen for 5 years.
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i am 46, diagnosed at 42. I got my period back 1 year after my last chemo. Started Lupron. My MO was pusing OS even b4 SOFT was released as she was very confident that it would show a benefit. I have been doing OS plus Tam for 2 yrs. i went off 2x to see if I was in meno and nope, periods returned both times. I am switching to Femara soon. Will see how that goes and if I tolerate I will have my ovaries out
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ASCO POST SAYS ....."Looking at the cohort of women who did not receive chemotherapy (average age, 46 years), they did well in all three study arms. Five-year event-free survival was 95.8% with tamoxifen alone, 95.1% with tamoxifen plus ovarian suppression, and 97.1% with exemestane plus ovarian suppression".“In this older group of women who did not have chemotherapy, there is no reason to add ovarian suppression. The average age is 46 years, and some of these women will go into menopause soon,” Dr. Francis said
I am 48 now and stopped my zoladex after 18 months following the results of this trial .......still on tamox and my Dr is ok with either tamoxifen or arimadex (AL's).
I plan on staying on tamox for now.
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Mm68, your stats are similar to mine (though my tumor was a bit bigger). I'm 42 now, and on tamoxifen, which is tolerable. MO said no need for OS. I think I'm in tamopause, as I'm 3 months without a period. -
Thanks Lojo,
I guess I have just read how bad the side effects are and a friend of mine stopped taking shortly after prescribed and been off of now 4 years. I'll still get MO opinion.
Have a great weekend
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Glad to see a thread on this. I was 37 at diagnosis and am 40 now. My current MO, former MO and my gynecologist are all recommending I do OS with switch to AI. I went through chemopause but my period came back regular like clockwork while on tamoxifen (which I've now been on for 2 years). It feels like such a drastic step but I guess it is the thing to do... My question though is that I've gotten mixed opinions from folks about using an OS drug vs just going for the oopharectomy from the start. Would be interested in hearing others thoughts on that. Also - any stage 2 ladies out there have your MO tell you staying on tamoxifen alone is reasonable? Thanks
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I have been on Tamoxifen for 2 years now. After a year or so I had my annual checkup and requested a TVUS which showed "changes" pretty much to everything...thickened lining, enlarged uterus, ovarian cysts and fibroids. After 8 months of watchful waiting and a few things getting worse, I had a full hysterectomy including ovary removal. I'm 9 weeks post op and feel really good. I'm 51 and was not menopausal when I had the surgery but was just starting to get some menopause symptoms so maybe perimenopausal. My docs wouldn't even consider drugs. They said Tamoxifen can be really sneaky. And my MO says he'll keep me on Tamoxifen for now because the studies say if you're premeno when starting Tamoxifen they want you to stay on it for 5 years even if you become postmeno during that time as long as you are tolerating it well, which I am. So for now, Tamoxifen stays. I have mild night sweats since hysterectomy (which my doc suggested iCool but haven't tried it yet) and muscle pains from Tamoxifen which Gaia Turmeric, ginger and magnesium take care of very well. So for now I'm happy.
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The results of the SOFT study showed that women who didn't need chemo were able to stay on Tamoxifen alone. For higher risk, those that had chemo, they showed that OS + Tamoxifen or OS + AI was better. I'm sure there are some MOs that are ok with their patients being onTamox alone but it is going to be on an individual basis. Everyone has a different risk. My MO was fine with Tamoxifen while I was in Chemopause. I'm being switched now that I'm back to being premenopausal
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