Stopped Letrozole for One Month

sonya16

I am hoping to get a response on this. Once all my cardiac work up was done and it was found there were no issues, It had been 2 1/2 months since I stopped the letrozole. I will say during the time that I felt really good. And the palpitations stopped completely. I restarted it in early June and was on it for almost 3 weeks when I suddenly got hit with extreme fatigue, headaches, neck, pain, and high blood pressure which is a brand new thing for me at least at this level which has been around 155/90. I decided to stop for a week without calling my MO because I always get the same nurse who really doesn’t even want to talk about it and just tells me to keep taking it. I Hadn’t really had any improvement in how I felt after a week so I spoke to the nurse and told him that I had been off of it for a week and of course he yelled at me and I restarted it. I’ve been back on it now for only 10 days and my symptoms have gotten worse. The headaches are crazy terrible, I’m so exhausted, it’s totally debilitating and I just can’t even get out of the house. I don’t know if it’s the letrozole or now if I have brain Mets. Along with the sudden spike in my blood pressure, I have constant tinnitus, and my heartbeat is pulsing in my ears. This all came on so suddenly, and of course, my mind is going to brain cancer and something pressing on my neck. My primary doctor did order an MRI of the brain which is next week. As I’ve mentioned in prior post, I always worry that because I’ve been on and off the AI so much in the past year that they really didn’t do anything to help me prevent cancer spread. I was never one to get headaches but these headaches have lasted for almost 3 weeks now and they are constant. Has anyone had this from taking the letrozole or is it most likely something else? It’s really hard not to freak out about this because the pain is constant and the fatigue is constant.

thank you

dimples90

sonys16,

Sorry to hear about the symptoms you are experiencing! I took Letrozole for the first two years and the last 1 1/2 years of my 5 years. Took the other 2 AIs in between the Letrozole.
My BP slowly increased every year I was on an AI (baseline was 100/60). However, my BP became very high during my last 6 months on it. Got so dizzy one day. BP was 180/100.
Was it the Letrozole? Or was my increasing BP associated with aging? Or my family history (my Mom had hypertension) ? I really don’t know. My PCP started me on a BP med. I have always been very active, continued to be after diagnosis to present time.
Could your headaches be associated with your increased BP?

As far as fatigue, that was a symptom for me. I just kept on exercising to try and combat it. It sounds like it is stopping you from doing things. I did not have any of the other symptoms you are experiencing.

I have followed your story on another thread and responded to you in the past. I’m sorry that you are worried about metastasis bc you haven’t been able to tolerate the AIs.
Also having to deal with the side effects and yelling from the nurse. That’s very unprofessional! Wishing you the best with the brain MRI next week.

sonya16

Thank you dimples90, for your response.

What is weird is that my baseline BP was always 120/70 or thereabouts. It was like it jumped overnight. That was very sudden along with the headaches and the neck, pain and the crushing fatigue. I had only restarted the letrozole for about three weeks when this all hit at once as I mentioned in my message. And then this pulsing in my ears, as well as tinnitus. All of this is new for me all at once. And you’re right, it’s very confusing. Is it letrozole or is it something else? Even though the nurse at my MO’s office felt I would’ve been better after stopping for a week and should restart, my primary said it takes longer to get out of your system. Of course I never get to speak to my MO in between appointments so there’s never any real discussion. I do have an appointment on Monday, which I made with the MO’s PA to discuss all of this. As I mentioned, I stopped taking the letrozole again, two nights ago. But since you didn’t have any of these other symptoms, I’m concerned it’s more than just meds. And I would think that these kind of symptoms wouldn’t hit all at once, including the blood pressure spike. But I don’t know. My primary did a whole panel of blood testing and everything looked good except I have iron overload which still is not a bad level. I have tested for the defective gene for hemachromatosis so the higher iron is not as surprise. She tested me for auto immune issues, thyroid, CBC, metabolic panel, everything was normal. So she just wants to do the MRI to rule out any brain lesion.
I do like my MO, but I am considering changing because of the staff.