Letrozole Is Superior to Tamoxifen for IDC and ILC

cp418

http://www.practiceupdate.com/journalscan/20330/1/...

Letrozole Is Superior to Tamoxifen for Invasive Ductal and Lobular Carcinomas

"The magnitude of benefit of adjuvant letrozole is greater for patients diagnosed with lobular carcinoma versus ductal carcinoma."

nowords

I wonder how much of the results are because lobular often recurs 10 plus years out....what percentage is derived from that fact....

England59

I'm on letrozole for the next 10 years

I read that letrozole is prescribed for women post menopause and tamoxifen is for women pre-men

Racy

This is good news and I will be taking Femara for as long as possible.

England59, younger women can take Femara if they have menopause induced by surgical removal of ovaries or by injection of drug that halts ovulation.

JohnSmith

Yes. This has been discussed in a few ILC threads. In general, AIs perform better than Tam, which shouldn't surprise anyone since AI's are a second generation endocrine therapy.
The news that cp418 posted specifically points to secondary analysis of Big 1-98 trial, which started in 1998.
The article is behind a paywall, so to summarize:
1. Secondary analysis of the randomized, phase III trial, the authors assessed the relative effectiveness of Letrozole (Femara) compared to Tamoxifen (Tam) in 2923 women with IDC or ILC. Patients with both ILC and IDC had better disease-free survival (DFS) and overall survival (OS) with Letrozole (Femara) compared with Tam.
2. The relative improvement with Letrozole (Femara) compared with Tam appears to be greater in women with ILC vs IDC.

This is great news for the postM ILC cohort.
For the preM ILC cohort, things are still unclear.
The SOFT clinical trial results released at last years 2014 SABCS told us that Ovarian Suppression with the AI, Exemestane (Aromasin) improved DFS for the <35 age group and the "higher risk" chemo cohort, BUT it did not parse the ILC cohort from the IDC cohort. That subtype analysis comparing ILC to IDC has not been done yet and probably won't be known until late 2016. Since the SOFT trial enrolled 3,000+ preM women, it's estimated that roughly 300 (10%) women were ILC.
It would be very interesting to know how the preM ILC cohort did in this SOFT trial. Would they also benefit by doing Ovarian Suppression and taking an AI? As nowords pointed out, late recurrences are the risk, so you'd need to analyze the data many years from now. By then, one would hope that we have a cure (or at least an effective ILC targeted therapy).

texas94

I hate to be a downer, but finding out Femara is best for ILC is some of the worst news I've ever gotten, and it's the reason I've continued to torture myself to the point I have almost no quality of life. I'm a 44 year old recurrent ILC patient (2007 and 2014). I had an oophorectomy Feb 2015 and began Femara mid April. I've hung in there for 7 months now, hoping at some point the side effects would subside, but they've only grown worse. I've easily lost 20 IQ points, and my memory is not only poor, I'm actually beginning to have complete memory blackouts. However, the joint pain is what's become the most unbearable. It makes every movement labored, and as my hands are the worst, the past month I've lost the ability to type, write, cook, drive or really do anything without excruciating pain. A couple of days ago, as ridiculous as it sounds, even brushing my teeth and hair became almost impossible. I've tried every supplement and suggestion on this site with no improvement, and I cry every day asking how much more I'll have to sacrifice in order to stay alive.

I've finally made the very difficult decision to discontinue Femara. I'm pretty tough and already handle a lot more than the average person (I know all of you understand... seriously, if people had any idea what we endure...), but when you get to the point you're alive but not living, you realize enjoying what may be a shorter life is better than simply surviving a longer one.

sgreenarch

Texas 94, I hear you. First, I can't imagine going down this road twice, though I know that's a real possibility for any of us. And of course, we'll deal, but still...it's rough. Second, I feel for you re the side effects. Have you tried any of the other AI's? People seem to have dif experiences on each drug, and a different AI may be better than none, even if Femara might be best? Best directed to your onc, just asking. Also, though it sounds like you've tried everything and you're tired, some people say that accupuncture and/or reflexology helps them. Personally, I had a very hard time with joint pain for the first few years, but it has subsided considerably to the point that it is now just mild. The other things that helped me (just in case you haven't tried these yet were taking omega 3 and lots of swimming (seems to lossen everything up.) Of course, wishing you the best and hope you feel better. Feel badly that you're crying every day...

Anonymous

texas94 - {{ HUGS }}. So sorry for all you are suffering. Hopefully your med team can get to the bottom of it all and have you try something else if you have not already done all that.

texas94

Thanks sgreenarch and patoo. I don't comment much, because I hate being someone with nothing positive to say! I'm going into my dr in two weeks to discuss trying alternatives. I've told him I'm willing to try anything he suggests and agree a different AI is better than none (I'm even willing to try Femara again once I stop hurting... maybe taking it 6 months on one month off or something similar would be ok). Hopefully we'll find something that allows me a good enough quality of life it makes sense to stay on it (not crying a few times a day would be wonderful!). I've always been extremely sensitive to any drugs; they seem to work "extra good" in me, which can be great or awful! I've tried to hang in there with the Femara, but I'm essentially handicapped at this point, and I don't use that word lightly. The cognitive and emotional issues are tough too, but I truly feel I could handle them if they weren't exacerbated by intense, constant pain.

p.s. Yes I take Omega 3 each day along with D3, Glucosamine with Chondroitin, Magnesium... and I'm looking forward to being able to move in any way. I know it will help so very much, but right now I'm unable to do anything, since my hands don't work. I can't hold anything or even hold myself up off the floor to do a plank! It's ridiculous where I am at the moment. If I'd been able to continue normal life despite the pain, I truly would have continued to weather through it.

lisa137

Not trying to change your mind, or to suggest that I think you should stay with the Femara despite your pain, because all that has to be a personal decision that you, and only you, can make. I just wanted to throw this out there though: I started Femara just over a year ago, and in the last two months I've really been noticing that my side effects have reduced pretty dramatically. My knees, especially, were really painful for those first months, and seemed to be getting worse, but kind of all of a sudden, they got better. I'm not sure exactly when, but at some point I realized that hey, sitting down or getting up from the toilet didn't make me squeak with pain in my knees anymore. In fact, it's stopped hurting at all. I was also having pain in my right shoulder which now only shows up when I've overused it. My hips are a bit more stiff than they were before cancer, and sometimes hurt a little, but not much, or for long. Same with my right thumb (which I broke when I was a kid, so not surprised I'd have pain there, really.) My hot flashes have even reduced dramatically--now I only get them if something stresses me out, OR if I've just eaten, especially if I've eaten starchy food. I had read someplace that side effects "peak" at around 6 months, but I think for me they peaked a bit later than that, and have since become a minor nuisance more than anything else.

Also, I have no idea if it's relevant, and it's not a suggestion I'd make, for obvious reasons, again, just throwing this out there, but, basically what happened was this: I had fallen and injured a knee a few months back, and found that for SOME reason, if I took a hydrocodone for injury pain at night, the next day all my usually painful joints were mostly non-painful and not even stiff. So, on maybe three or four occasions I took a hydrocodone at bedtime because I knew I had things to do the next day that didn't allow for me to have stiff and painful joints. It worked, and I have no idea if it's a coincidence or what, but after that, things just kept getting better--- and WiTHOUT any more hydrocodone. Probably it was about to get better anyway, but who knows?

My oncologist wants me on an AI for "at least" 10 years, so I'm really overjoyed that it's become bearable, because for a few months there I was seriously wondering if I was going to be able to stick it out--and the fact that I had a complete hysterectomy JUST SO I could take femara instead of tamoxifen made it just that much more frustrating. Now I know I CAN do it, and I'm feeling great.

Trvler

Lisa: Thanks for posting that story of your good outcome. I think we almost always hear the bad stuff so we get a skewed idea of what to expect.

Anonymous

Texas94, did you try Aromasin? Another AI...I had severe problems with Arimidex/femara, but Aromasin is do-able for me, although I dislike having to take any meds at all...but that's another story and not one I'll finish for 7 years.

And by the way, all, any information about Aromasin and ILC? I hear about how great Femara is, but what about Aromasin?

texas94

Lisa137- I totally understand where you're coming from, and honestly, even a month ago I'd have replied the same. I'm a pretty fit person, and until then, I was in a lot of pain but very determined to stick it out. Losing use of my hands was was sent me over the edge. I can handle a lot, but I can't give up being able to live life in even the simplest of ways. I'm not exaggerating either; it hurt terribly to use them before, but now I either can't use them, or the pain is so excruciating I black out! It's not like the rest of my body which hurts, but the pain dulls a little once I start moving. The longer I continue to try and use my hands, the worse they hurt. I have to believe my inability to be active in any way, plus to overload of cortisol from my misery and ridiculously high level of stress have to cancel out any good from the Femara. I took my last pill Dec 4th and already I feel I've been let out of prison, so I obviously don't handle it well at all. If I had as much pain as I have even right now, I'd stick with it!

claireinaz- I believe my onc wants me to try Aromasin next. I'll start in a couple of weeks once my body has stopped hurting. I'm starting cortisone shots in my hands/wrists tomorrow to try to speed recovery!

My gosh- the things we endure as breast cancer patients!

sgreenarch

texas94, last nudgy thing from me

Not sure if you like to swim, but that has made all the difference for me. Even just floating...i broke two bones in my foot this summer and had to be off of it for 10 weeks. (Have OK bone density, I'm just a klutz...fell off of my platform heels!) Then needed physical therapy and the orthopedist recommended swimming as the best physical therapy. I've found that moving against water, even fingers, toes, loosens up everything in the gentlest way. After a swim, I am always a new, more relaxed person. Only downside is that it makes me ravenous! I swim a kilometer and then want to eat a house. So no losing weight...but SE's of painful joints are minimized. Hope this helps.

ElaineTherese

sgreenarch -- don't have ILC (IDC here), but I agree with you re: swimming. I'm on Aromasin, and find that swimming really loosens my joints. By the way, I'm not a "good swimmer"; I do my laps, but it's mostly just the crawl and modified back stroke. I do about two hours a week, and it helps me keep limber.

Anonymous

Texas94, some hopeful words--I have been on Aromasin for 6 months now and my joint/trigger finger problems, plus bloating and terrible mood swings, have pretty much all gone away. So I hope for the same for you.

For all, I practice Bikram yoga 2-3 x a week and it helps me in several ways: keeps my weight down, makes me feel like I'm doing something really good for my body because it's so challenging, tones, and loosens (and keeps them lose) muscles. So emotionally and physically it works for me.

karen1956

Texas94.....I endured AI's for 3 1/2 years with side effect after side effect. Finally I said enough is enough...I needed to get back some QOL. That was in March 2010. I'm not who I was before Dx but I'm definitely better than I was on AI's. I started out on Arimidex and after 5 months I had developed severe CTS bilaterally. Everyone said I was just the right candidate for CTS (middle age petite woman). Wrong!!!! I had surgery on the worse of the wrists. While awaiting to do the other wrist as I had my exchange surgery planned. I went off the Arimidex and low and behold the CTS went away. I also called Astra Zeneca and CTS had just been added to their list of side effects (if I remember correctly, only 3%). I tried Femara for only a month, at first it was better but after 2 weeks the side effects came back with a vengence. Teh joint pain was horrid on Arimidex and Femara. I was doing hand therapy after my CTS surgery and this was when I was trying the Femara. Both the therapist and I could see a decline in hand function on the Femara. I then went on Tamoxifen. LAsted 2 months and stopped due to GI side effects. MY onc then gave me a couple week break and then I started on Aromasin. To be honest this was probably the worst for me. Not much joint pain, but cognitive decline and depression and anxiety and insomnia. I was taking Rx after Rx to combat the side effects. I also developed bilateral deQuervances tendonitis and needed surgery on both wrists. I kept listening to my onc to stay on AI's as it had to many positive benefits!!!! Yeah, right!! Finally I listened to my heart and said NO more!!! I've never regretted stopping. I know that I gave it my all. My onc still asks me at every visit (still at 6 months) if I want to try AI's again...and I politely refuse. Plus he told me if I went back on them I had to do the whole 5 years (or 10 years)....just can't risk the side effects... There are no guarantees on or off these meds so I rather have my better QOL.

All the best to you. Hope you get some relief and find a good solution for you. Hugs.

MmeJ

texas94, I'm sorry if you mentioned this and I read right over it ... yes, letrozole is supposedly the thing for ILC. But I haven't heard or read anything that would prohibit a post-meno woman from taking tamoxifen. That was the one-and-only for decades, before the AIs were developed.

Of course it has its own side effects (I have a lot of them). But it works differently from the AIs, and maybe your body can handle it better than the AIs.

claireinaz, the study referenced included letrozole only. No studies on the other two AIs.

Anonymous

My MO told me that if Aromasin didn't work for me because of side effects (during our swap from Arimadex to Aromasin, BECAUSE of the awful side effects from Arimidex), she would put me back on tamoxifen. It's like a last-ditch thing for post-meno women if they can't take AIs.

Claire

Wildflower2015

Claire,

Why is tamoxifen considered a last-ditch effort for post-meno women as compared to the AI's? I am extremely high risk for osteoporosis and although I haven't gone on any anti-hormonal drug yet, I'm pretty much ruling the AI's out in favor of tamoxifen. In a recent discussion, my onc seemed to be ok with either as long as I was taking something. Still haven't decided yet.

Anonymous

Wildflower2, Apparently BECAUSE the AIs have a higher rate of effectiveness for tx post-meno women compared to Tamox (particularly with ILC).

In most cases a MO will RX an AI first as long as the survivor is post-meno. In my case, I began with tamox, then when chemo put me into full menopause after we checked my hormone levels over a year, I switched to an AI. If SE from those, having tried all AIs first, are too dramatic, then Tamox is used.

However, it doesn't preclude a doc from RX'ing tamox for a patient if the patient wants it instead of an AI. I'm only outlining normal protocol. And yours might be a special case. I don't suffer from bone loss, nor does osteoporosis run in my family, and I don't fit the high risk profile of someone who might develop it. Protocol doesn't preclude making exceptions as in your case.