Afternoon, I’m stressed out and hoping there are some answers out there. Quick synopsis. Stage 4 mbc diagnosed 6 years ago , 26 weeks of red devil , lumpectomy, 1 lymph node removed, radiation 6 weeks including to t4 where it metastasized. I have bee NED since then . I am scheduled for knee replacement in 4 weeks and had to stop Ibrance till the operation( they feel safer against infection) now the orthopedic surgeon wants me off letrozole for 6 weeks after operation to prevent blood clots. Which I guess means I will then be off Ibrance also. Which makes a total of 10 weeks off Ibrance since I think you have to take both. I am petrified that being off these meds will leave me vulnerable for the cancer to return. I have been on them for 5 years. Has anyone experienced this.
Thanks, Mimi
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You don't have to be off one just because you are off the other. So no Ibrance before, no Letrozol after. Or perhaps you could switch to an aromatase inhibitor that does not pose a risk of blood clots, like Tamoxifen. Your oncologist should be able to advise you of the relative risks.
It isn't? I just met with an MSK oncologist, was complaining about Letrozole, which I just started, and she said I could take Tamoxifen with Varzenio, instead of Letrozole (but then I am trading the risk of blood clots). -- Looked it up. Important difference. Glad to learn that.
Hello--Tamoxifen is an estrogen blocker, but does not work by inhibiting aromatase. Sorry to be confusing! And yes, a friend was put on tamoxifen and not letrozole because she had a family history of heart problems. They all have their horrible side effects!
Well, this is a puzzle: because I was having trouble with Letrozole side effects and was afraid of blood clots with Tamaxifen (both parents died of strokes and my brother died fairly young of a catastrophic heart attack), my onc put me on Anastrazole. I had taken Arimidex for five years after my original bc. Had no cancer for the next six years. She decided that there is no evidence that anastrozole failed, it was long ago, and I tolerated it well. No break. Letrozole yesterday, anastrozole today. Then I read the side effects. It seems they are different for those taking it with early stage bc than for those taking it for advanced bc. The list of side effects for advanced bc sound just like Letrozole!
Yes, this is all very confusing! I thought--due to the experience of my freind--that the two AI's, anastrozole and letrozole, can cause blood clots. But here is an article saying it is worse with tamoxifen! medivizor.com/blog/SampleLi... This was published in Jan of 2019. My friend's experience was in 2018, same year as I was dx. One never knows--so many new studies! Sorry I threw out old information! Kay
Tamoxifen poses a higher risk -- I had heard that -- but that does not mean that AI's do not increase risk. Double negative. Let me rephrase: AIs increase the risk of blood clots, but Tamoxifen increases it much more.
Agreed! I noticed I worded it a bit oddly. "It" being blood clotting. I was so tired yesterday and very brain--fogged! No wonder I can't write! Sheesh! Thanks for the info. Kay
Thanks to all who responded to my questions about going off meds before and after surgery. After contacting my oncologist I was told that no I would not be stopping letrozole but treated with anticoagulants after surgery. Since I am already on xerelto , have to stop taking 3 days before surgery ,I assume I will resume taking it after surgery. I’m not sure when I will resume Ibrance after surgery, I have 3 weeks before surgery and have appointments scheduled with primary care, my oncologist, anesthesiologist, and orthopedic PA. Looking forward to resuming “normal” life. Right now I’m recuperating after my fourth covid shot. My usual reactions have been fever and flu like symptoms for about 3 days after. This time within 3 hours of shot my fever was 102, by day 2 finally 100 , 5 days later I am still really weak no fever, but have virtually been sleeping all those days. Anyone else have this strong a reaction.? Stay safe and healthy
Hello--I have been on and off the drugs for different things, and am 4 years since de novo dx. Usually if you switch drugs they have you take an 8 week break. Letrozole is the heavy lifter--so a 6 week break from it does not sound serious to me. I was first on anastrozole, and between that and starting fulvestrant I was off for 8 weeks. My onc also put me on a letrozole break for at least 8 weeks--which I tried after the fulvestrant. These drugs either stay in your body--or the body still acts as if we were on them--for a long time. Ibrance is less important--and I was off it for surgery and radiation--forget for how long. Ask your onc more questions if you are concerned--but it does not sound like a problem at all to me. It will depend on how aggressive your cancer is. I too have bad knees--and cannot imagine how to have the knees replaced while having MBC! So, good for you! Best! Kay
Yes I have. And had absolutely no progression. Don’t stress, concentrate on all your PT and getting your strength back from surgeries!(I had a hip replacement) . Everything worked out.
My wife faced the same decision nearly a year after her original de novo MBC diagnosis, while on Ibrance, Letrozole and Zometa. She had needed knee replacements for years and then cancer came along... Her onc at Dana Farber (Dr. Nancy Lin) said the following:
“I can’t tell you how long you are going to live, but I CAN tell you that you will live long enough to make this surgery worthwhile!”
So she had one knee done about six months before our daughter’s wedding and the other one a month after. Two years later, she was still on Ibrance and Letrozole and doing well, with almost pain free knees! She was off the meds for about three weeks total surrounding each surgery, but otherwise her cancer protocol was not affected. Sounds like your onc is recommending a longer break, but may still be fine.
Besides being great advice vis a vis her knee surgeries, she still looks back at Dr. Lin’s comment as one of the most reassuring points on this journey, at an early time when it really helped... She is five years into that journey and happy she did the surgeries.
Good luck with your decision, and the surgery, if you choose to go forward with it!
no, but I was given the same warnings by my onc. & also taken off my Ibrance due to upcoming possible root canal and trying to get scheduled for surgery on a worn out artificial hip joint. good luck on your surgery. I'll be curious to follow your updates. Might be help for me as well.
Hey there, coincidentally, I just saw an oncologist yesterday who mentioned Letrozole does not put you at increased risk of blood clots. She said Tamoxifen does, as well as all the Cdk4/6 inhibitors. I would go off the Ibrance maybe but not the Letrozole. Consult with your oncologist. Perhaps you don’t even need to stay so long off the Ibrance. Maybe you can wear compression garments. Good luck!
Hi Mimi. I've been on letrozole and Ibrance for just over five years and NEAD since August 2017 (approximately). I had back surgery last November 9 and was off Ibrance two weeks before and six weeks after, but I was on letrozole the entire time. My orthopedic surgeon didn't care about the letrozole at all. When I had my blood panel done December 1, my ANC was high (for me!) and my other numbers looked great. My scans are coming back exactly the same now as they were in October before the surgery. You might ask your doc about going off both for such a long time, but I wouldn't panic if that's required. I think you'll be okay.
I will be having Carpal tunnel surgery next Wednesday and was supposed to start Ibrance tonight. Told not to restart until a week after surgery but told to continue with Faslodex shots. Even missing a week makes me nervous!
I don’t know if this is the post you referred to recently, but if not: Try not to be nervous, Marianne. My oncologist had me go off Ibrance for almost a month to have some medical procedures and wanted my immune system to be as strong as possible for those. CT and Bone scans were both stable after that. As I understand it, Ibrance is a complement to the aromatase inhibitor and boosts its effectiveness. Many of us are scared when going off it for a period but it seems to have been ok for me and others in the group. ❤️
I am due to have (yet another) implant exchange and was told I would have to go off for two weeks before and after.
This cancer of mine is slow growing and has been hanging around in my body for the last 12 years (since mastectomy) so I guess a month off the treatment wont make too much difference. I think generally, the hormone receptive cancers are not as aggressive as the TN and HER2+ and are slower growing.
I will keep up my supplements and eat lots of mushrooms and other natural helpers in the meantime.
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