Intervals for AIs

sueinfl

I have read posts in the recent past that mentioned that AIs can be more effective or, at least, their benefits extended by taking a break from them every so often. (unfortunately, did not bookmark them at the time!) I have not been able to find any clinical evidence/papers to suggest what would be the best timing, e.g. six months on, three months off, etc. I am probably not wording the searches effectively.

Can anyone tell me if their oncs have suggested this and what the intervals have been? I would appreciate being able to take breaks that would provide relief from symptoms and prevent/delay resistance.

Peace and strength,

Sue

MargoChanning

Hi Sueinfl: I have been on Letrozole, then Anastrazole and now back on Letrozole since October, 2012. I have been on at least one break every year, at the oncologist's suggestion, to rule out the AI's as the culprit in side effects that had sprung up. For example, after 8 months on Letrozole I started experiencing daily episodes of dizziness which escalated to 8-10 hour vertigo episodes. He sent me to an ENT who ruled out sinus/inner ear and suggested a hiatus from the drug to rule it out as the source. After 30 days off, during which the dizziness and vertigo disappeared, both docs agreed it was Letrozole and I started taking it at night to minimize dizziness. After 2 years I switched to Anastrazole, had little dizziness but started having much worse insomnia due to multiple wakings with hot flashes, accompanied by memory problems, fatigue and finally this year I was diagnosed with Episcleritis in both eyes, which a Rheumatologist I was referred to by the Opthalmalogist who diagnosed the eye disease said was likely linked to Anastrazole according to research she read up on. I went off Anastrazole for a month, again with the MO's permission, and am now back on Letrozole but had a recurrence of Epislceritis earlier this month. The Opthalmalogist says if it starts recurring more frequently it could lead to vision problems or loss. He also said the problems will not go away when I stop AI's, the damage has been done. My MO said breaks here and there are not a concern as long as I resume taking the drug and finish the 5 year high risk period. He hasn't mentioned any research to back that up but he's considered a breast cancer expert at Cedars-Sinai so I assume he knows what he's doing.

sueinfl

Thanks, Margo. I am so sorry you have had such extreme side effects. Mine have been limited to joint/tendon pain and extreme fatigue which might be from dealing with the pain. Moving helps with the pain, but the fatigue keeps me from keeping it up all day. I wonder how much using generic brands affect symptoms.

I am hoping to get into a clinical trial for a vaccine since nothing is showing up on scans right now. It would be great if that included not being on the AIs any more!

I hope your eyes do not get any worse,

Sue

Hipline

I am watching and waiting for results of a study that is testing 3 months off/9 months on of letrozole in postmenopausal women who have already taken hormonal therapy for about 6 years. I myself have taken two breaks from hormonal therapy - each of them 6 weeks. It seemed to do me good. But I am on the 10 year track per my MO and would really like to do the 3on/9off route. Here's the link to some info on the study. http://www.isrctn.com/ISRCTN43286545

MargoChanning

Thanks, Hipline; that study sounds extremely interesting. I recall reading somewhere in the last couple years that there were theories being tested out about withholding aromatase inhibitors for some period of time to allow cancer cells that were "in hiding" to be coaxed out and then would be more likely to be impacted by a resumption of the drug. It's clear there are more chapters being written on this disease and the treatments. It would be great if it turned out it's actually better for you to take breaks; that would allow a lot more people to get relief from the side effects and might reduce the number of people who drop out before the 5 years is up because they've reached their personal limit.

sueinfl

Thanks, Hipline. I read a paper on Pubmed stating the rate of compliance for AIs was only 70% after a year. I am frustrated by the oncs bafflement over this and a new study of 111 women that concluded that preconceived negativity towards AIs could be the cause of side effects. This is not in our heads and there is so much more that they do not know concerning collateral damage. I am sure I am overstating this due to being so fatigued, but it seems like the attitude is "It's just estrogen being inhibited. How bad can that be? Silly, ungrateful females..."

Sorry! I am a lot more chipper in the morning. ;-) I should probably have waited to post until then. :-p

Peace and strength,

Sue

dtad

sueinfl...You are NOT being grumpy just realistic. My MO told me only 50 percent of women complete the 5 years of anti hormone therapy due to SE. I'm not really sure why everyone seems to think this is ok. Add the other women that are living with SE and that is a pretty big number. Why can't we do better than this? That study also infuriated me! Instead of raising awareness in Pinktober, how about some better treatment options? I'm happy for all that do well on anti hormones but it's just not enough of us to consider it an ok treatment option. Good luck to all..

MargoChanning

I completely agree - you are not grumpy, and I think part of all of us having to be defensive is these ridiculous studies that come out with people having little or no side effects. I think about my own experience with my oncologist frequently saying, "you're doing great!" when for 4 years I've had serious side effects that have impacted my daily life. In his view, I'm doing great because I haven't had a recurrence and I'm still upright. I think that's his standard. These oncologists have no idea what it's like to live without a key hormone involved in dozens of non-reproductive functions, as was accurately described in one of the research papers on the NIH website. Even now after having been diagnosed with an eye disease that is in all likelihood resulting from estrogen deprivation, my oncologist had nothing to say. I believe it's because all of them really have just one goal, to prevent recurrence, and everything else is meaningless to them. I can see why so many people stop reporting SE's when their doctor doesn't listen or tries to imply the cause is not the drug. Based on comments I've seen here and elsewhere, I believe there are more people stopping the drug but not reporting it to their doctors. I've seen European research that says there is about a 50% drop out rate before the 5 years is up. That is more realistic to me.

Anonymous

I would like to see some research for taking AIs with a periodic break as well. Would this be appropriate for Aromasin too, I wonder, or just Femara?

NatsFan

I am grateful for my MO who is a b/c survivor. She "gets" the seriousness of the QOL issues with AIs since she's on them herself. And yep, she takes "vacations" from AIs now and then when the s/e get too bad.

We need more survivors who are oncology medical professionals and are living with s/e day to day the way we patients are. I think that would do a lot to help balance out that all too common attitude we hear of "silly emotional female - it's all in your head." Margo - I think you've hit the nail on the head that many MOs think all is well if the patient is NED and upright. My first MO was exactly like that - I kept asking for help and tips to deal with s/e and got nowhere - he'd literally be standing there with one hand on the door knob trying to get out of the exam room while I was asking for help. I finally got so disgusted one day that I asked for copies of all my records and walked out, never to return.

sueinfl

Thank you for the replies! For some reason, bc.org has not been notifying my email of updates to this thread and I just happened to check this morning. This pubmed piece backs up the numbers concerning compliance. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC311989... It seems as if there is better compliance when part of a clinical trial. I cannot help thinking that is, at least partly, due to women being more closely monitored and, I hope, listened to.

The worst part is feeling ignored and our symptoms not acknowledged. When I took a two month break from anastrozole, I mentioned to my VA onc (he was a resident from the neighboring U of Maryland) that it was nice for my hair to start thickening again. He said, "Anastrozole is not chemo." When he saw the look on my face, he backtracked and said, "I guess you're right." This was the same person who kept telling me I knew more about my cancer than he did. That seems to be the sad case when it comes to lobular, in particular. I am so looking forward to the ILC symposium at the U of Pittsburgh the end of this month!

On a positive note, the VA in Baltimore is assigning someone the position of Cancer Survivor Caregiver. The saddest and, obviously, most frustrating part of our treatment is the gap between our oncs and PCPs. The oncs treat the cancer and then walk out the door, leaving our poor PCPs (and us!) to try and figure out how to treat the symptoms from the cancer treatments. What we need are medical professionals who specialize in treating those new symptoms just as physical therapists take charge of the aftercare of surgical patients. First, they have to quit denying the side effects exist or say we should be grateful we have them instead of the alternative.

I will keep searching for any info on interval dosing. Maybe someone at the symposium will have looked into it. :-)

Peace and strength!

Sue

newfmama

I asked my new Naturopath/Oncologist whether it was okay to take breaks from Letrozole & she said it's not good to do that. It causes disruptions in our hormones & can cause the cancer cells to grow. Since our AI's only "pause" the cancer from being fed estrogen, any break gives those cells fuel.

It's quite depressing to know we have to take this drug the rest of our lives. I am grateful to be alive but the side effects suck

sueinfl

Thanks, Newfmama. I would not even consider a holiday if the side effects were not getting so much worse. I have been off a week now, and no improvement, yet. I have just added 5-Loxin/Boswellia to my supplements since studies have shown it to be more effective than placebo in improving osteoarthritic pain. I would love to give my stomach and intestinal tract a break from ibuprofen.

Sue

Meow13

I forgot how good I used to feel until I was off exemestane for 6 months. I dont want to go back to feeling crudy, tired pain etc.. But I do believe it helps keeping cancer away.

MargoChanning

Hi Newfmama, my understanding is that Aromatase Inhibitors are taken for 5 years (unless you are Stage 4). Recent research published this year shows that taking the AI's for 10 years results in a reduced incidence of recurrence (but unfortunately, not death from other diseases). But this has not been made an ASCO guideline yet. Were you told differently (that you have to take it the rest of your life)?

I cant imagine taking this the rest of my life, unless I could take an early retirement from work and I can't afford to do that. Not sleeping, memory loss, joint pain, dizziness have all made working so difficult for me. I've taken several breaks from AI's since starting 4 years ago, all under the supervision or suggestion of my oncologist. The first was in the first year, for 30 days, to rule out Letrozole as the source of dizziness and Vertigo (turned out it was). I know when I've been off the drug for about 3-4 weeks I start to feel like my old self, more energetic and not prone to depression.

Interestingly, the research published this year that demonstrated the effectiveness of AI's in preventing recurrence if taken for 10 instead of 5 years did not show a reduction in mortality (death) from other diseases, particularly cardiovascular. I have a family history of cardiovascular disease so I'll be watching with interest for updates on this research.

Best to all.

newfmama

My onc said 5 more years & 2x prolia injections per year. He provided results of a study. I'll try to find it & post.

My new Dr. who is a naturopath/onc said most likely they will keep telling us 5 more years...unless something else comes along to "cure" it not just pause it. She's working with me to help manage side effects

It is depressing to think of all the side effects we feel & the potential for cardiovascular problems, bone loss & permanent tendon & joint deterioration. It's hard to know what to do. I'm trying to do all that is recommended but am tired of being in so much pain & unable to do the things I should be able to do at age 59. I'm in. Better bones & balance class & am struggling. I'm so sore after class & an barely keep up. I've always been physically fit but have deteriorated immensely over the past few years. 😢

sueinfl

I am beginning to believe this has far less to with "aging" us prematurely, than it may be accelerating an inherited potential for arthritis. I remember my maternal grandmother living with osteoarthritis and paternal grandmother with osteoarthritis and severe osteoporosis. My mother died from cancer at 57, but had started having signs of osteoarthritis a few years earlier. My ex mom-in-law just passed at the age of 94 from heart failure and was active and pain free up until the very end just like her mother who lived to 98.

Now if we could find adequate treatment for the arthritis pain that did not compromise our gastric-intestinal tract. I think if I did not wake up in pain in the middle of the night, I would have a lot less fatigue and brain fog. Being part of the VA medical system, Celebrex is out of the question, darn it, especially since it is a cox-3 inhibitor which is supposed to also suppress cancer cells.

Misery does not love company in all of this, but it nice to know it is not "all in my head."

Strength and peace,

Sue