Doing Well on Aromatase Inhibitors (AIs)
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Good luck Lilly. Hope all is well.
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LillywasHere - probing and biopsy on thyroid was uncomfortable, but less painful than the biopsy of breast or axilla. Maybe some of it is the skill of the person probing/poking? I think they use something to help guide the biopsy so that they do not have to poke more than necessary. Being tense does not help, so if you know of ways to relax. I wonder if they would be willing to give you something as long as someone drove you home. Years ago one dentist gave me some valium for a root canal (no other dentist has offered that), and it really helped.
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I can't remember who asked about weight gain on Letrozole. I have taken it for 8 months and no weight gain. Actually my side effects are stiffness when I get up. I woke up frequently at night and very vivid dreams. I could retell them in detail. Not frightening dreams just normal stuff. My oncologist suggested I start taking the Letrozole at night and that has pretty much solved everything.
I do walk workouts everyday and some yoga. I also swim during the summer. Feel good and cannot complain. I have high blood pressure and am on meds for that. It does not seem to have increased. I had high cholesterol and am on meds for that. Don't know how that is. Just had blood work done and am hoping it is ok. We will see. Life is good and I am happy.
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Thank you Ladies. Now my right knee is swollen and I found a lump in the back on my right knee this morning. Going through doctors and no one seems to find out what is going on. So fustrated!
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hi--sounds like you may have a bakers cyst--common benign condition-is a cyst behind the knee--sometime can be aspirated--do ask your Doc bout that possibility--K
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Thank you Kaylie. I have sent a message to the doctor and I am waiting to hear from her. My only concern is that all these things are happening so fast and all right-side only. Nothing to do with politics
)Had any of you have any experience with bakers cyst?
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I have the joy of a bakers cyst. It comes and goes - it can be very painful but usually gets better with rest, which doesn't help the stiffness from the AI.
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Thank you Annie. How did you get tested and what are the early symptoms? Is the lump/cyst hard or soft when you touch it? Sometimes I wonder if all this weird inflammation is coming from letrozole.
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My PCP diagnosed mine. It's a soft lump that is tender to the touch. It flares every once in a while. Ice, which I hate, helps. It hurts to walk and bend. I do letrozole contributes to the aches. When I first started, my hands were so stiff, my knees hurt and I had trigger thumbs. But now, I hardly notice any aches from it. I do get anxious and feel like crying more. Right now, I am dealing with a high CA 27.29 tumor marker. It has continued to rise - I am now at 41 up from 15 last October. Scans have been ordered. This never ends, does it?
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Annie, no it doesn't end. For us, fear of recurrence like a tattoo that can't be removed. I hope the scans will be clear. When do you have them? What makes a doctor decide to check tumor markers? I never had mine checked.
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My MO does this , suppose to every three months for the first two years, Now, mine are every month since it is high. Some MO's don't use this. There is not a consensus among drs about it.
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Well, I think I need to find out more about tumor markers. Is more than one marker tested? Frequency? MIne checked once, CA 27 29, 25.6, Sept 2019 when tumor diagnosed. So normal. This is the 3rd time BC, supposedly each time "cured", but I wonder what other tests, imaging, monitoring available
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Annie60,
May I ask you which numbers your MO considers as high? My CA 27.29 is 33, initially was 29 in September. My MO thinks it's Ok.
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Lillywashere, I had a Baker's Cyst last year (prior to BC). My orthopedic did an ultrasound guided needle aspiration and it took care of it. I was uncomfortable for a few days afterwards and then got a lot of relief. Hope you do too:)
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annie60,
How’s your sleep now? I switched my AI to the morning after figuring out it was causing the insomnia. I still had trouble waking up at 2am and staying awake for a couple of hours. Melatonin didn’t help. Trazodone did the trick for me and I’ve used it for 2 years now.
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Havefaith, thank you for getting back to me. My PCP is recommending some yoga, I already do yoga everyday anyway. She did not recommend a specialist. I had zoom visit and she couldn't see my leg from my desktop PC, I had to move my leg high like a ballerina, still didn't go high enough
), I used my phone, through my phone I could see everything but the back of my knee, it was like circus show. She thinks I'm fine but the lump is still behind the knee and bothers me. Was your Bakers' cyst round, mine is oval and very hard when I press on.Sleep.... ah, it is gone! I'm ready for nightlife since I don't sleep anyway.
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Mikamika - my numbers went from 15 in Oct, 2019 to 34 in May and 41 in June of this year. Top range is 38.5 according to my MO. It was explained to me that it is the increase over time that is the most concerning.
Sleep comes and goes. I have good nights and bad. A lot of the time, the neuropathy in my feet keeps me awake. Gabapentin sometimes helps, sometimes not.
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Annie60,
Thank you for your response!
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LilyWasHere - I can just imagine the contortions you had to go through for your zoom visit. Your description brought me a smile. One can only imagine some of the things that patients have to do "on camera" to show their issues to doctors. Hope your issues are resolved soon.
Healing thoughts to all on this forum.
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Annie60: you might try Melatonin. I found it helps. AND try to stay away from bad news!
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Annie60, can tumor markers be wrong? Like scans that can give false positive or negative? Since many MOs don't use tumor markers, I assume they are not accurate.
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Lilly - I am praying they are wrong. I was given the odds of 90% cure - surely that stupid 10% did not pop up!! I have read where a lot of MO's don't use tumor markers. Hopefully the scans will not show anything.
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Annie, do you have a good MO you can trust? Some MO go way and beyond with some worries that are contagious and impact us as well. I had several cases like this. I was so worried because MO was worried and it turned out to be nothing. I'm sure most of us here have similar experiences. I hope this is your case too. Not because I want you to worry but it may turn out nothing.
I have a thyroid nodule biopsy in the end of this month and I have told myself I will worry when I cross that bridge.
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Thanks for the hug!! My insurance denied the PET so not sure where I go from here. I honestly don't think anything is wrong. I am on a Facebook group with a group of women I met on BC.org under Starting Chemo October 2018. We have stayed close. Two of our group are now stage 4. I don't have any pain like they did. I am going to stop worry about it and go get my granddaughters. A week of chasing a 5 and 8 year around in the pool will uplift me!
I pray your thyroid biopsy is clear. Hugs to you!! My oldest granddaughter is named Lily!
Annie
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Thought I would offer my 2 cents here. I started Letrozole 1 month ago and have no side effects except hot flashes. I want to encourage all who have to take AL"s after treatment for BC to know that there are many who have no significant side effects. I'm sorry for those who are suffering with other SE's. Only 4 years and 11 months to go! Hopefully my SE's won't change. Hugs to all.
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Annie, how are you doing? Did you have any test or doc appt?
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All - just joined. MO just brought up AI this week - at my "ask." I'm finishing chemo and will have BMX on August 24th. I'm SO nervous about AI - and the potential side effects. I am thinking about NOT doing it. Talk me through - I'm really interested in people who have started, had side effects, switched around, and maybe stopped. What is survival/non-recurrence rates there?
I'm 54 - been in menopause for 2 years. Thank you!
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wahoomama87 - I was as anxious as you about AIs and very reluctant to start one. I tried Letrozole and after just 10 days was experiencing neuropathy in my right hand. My MO didn't think it was the cause but I wasn't taking any chances so stopped taking it. I have been on Exemestane for nearly 3 years with minimal SEs. I do suffer from insomnia even though I take it in the morning and some achiness but nothing that really interferes with my day to day activities.
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Wahoomama, why do you assume you will get side effects? If it’s because you read about side effects on this forum, keep in mind those who do not experience side effects do not usually spend time writing about it on these boards.
I have been on Anastrozole for about six and a half years and plan to continue for as long as possible. The only side effects that I have ever had, are normal aging signs that come from lack of estrogen which is the point of being on an AI to begin with, such as dry skin and scalp. Some stiffness but who knows where I would be at my age even if I weren’t taking this medication. So my recommendation is, don’t assume anything and follow your doctor’s advice. If you find out you can’t tolerate it work with your doctor to find a substitution that works better for you but don’t dismiss it before you try.
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wahoomama87...I have been on Letrozole since April and have no side effects at all. Granted that isn't a long period of time but I am thinking positively and know this is what I need to do to hopefully keep cancer at bay for good. I agree with @muska, talk to your MO and follow his/her advice.
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