Jul 11, 2019 02:41PM PatsyKB wrote:
marijen, you read my mind...I was writing my response just as you were writing yours! great minds think alike.
Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Dec 31, 2008 10:22AM - edited Nov 15, 2017 11:04AM by Moderators
Posts 10201 - 10230 (10,254 total)
Jul 11, 2019 02:41PM PatsyKB wrote:
marijen, you read my mind...I was writing my response just as you were writing yours! great minds think alike.
Jul 11, 2019 02:58PM marijen wrote:
Yes, PatsyKB,I saw that! I was able to lower my cholesterol very easily once I put my mind to it. Foods that lower cholesterol can be found with a search. My cholesterol did not go up with being on letrozole for 28 months. My MO at the time said if it does go up it would be insignificant. I compare lowering cholesterol to my thyroid and losing weight. Tried to blame it on hypothyroid but in reality I just had to quit a few things like sugar and wheat, and not eating when I’m not hungry.
Jul 11, 2019 03:11PM PatsyKB wrote:
Good to hear, marijen! I did not set out to go whole-hog (excuse the expression) plant-based, but the more I learned the more I was committed, not for any reason but my health and, honestly, my increasing love of what I was eating. I find myself fascinated but the whole subject, so I have lots of websites, blogs, podcasts, cookbooks. I do have a life outside eating and cancer, of course, but hey, a girl HAS to eat!
Jul 11, 2019 03:15PM marijen wrote:
Eating healthy and shopping healthy is a time consuming enterprise, I’ve found. But when my labs come back great I know it’s worth it plus I feel so much better. I wish I could find a good cooking class. One drawback is back pain that makes it hard to stand around watching food cook : )
Jul 24, 2019 09:41PM LillianGish wrote:
I’ve been taking Femara for almost 3 months now. I’m incredibly drowsy during the day. Is this normal? Did you get used to it after time?
My only side effect so far, so....that’s good!
Jul 25, 2019 07:28PM Taco1946 wrote:
Lillian - you've been through a lot in a year. It may not be the AI's but just all the emotional and physical stress. Be gentle with yourself. But...you might try switching the time you are taking the meds. It doesn't seem to matter the time but being consistent does. I take mine first thing in the morning with my thyroid meds but others have reported feeling better with a little food in the tank. Have you tried taking a short walk when you feel most drowsy? Good luck.
Jul 29, 2019 07:58AM Prairietwin2 wrote:
When I started Letrozole my onco looked at my hands and said" I see you have some arthritis, this will make it worse!
Jul 30, 2019 03:32AM Scottiemom11 wrote:
Joining in & have lots of questions. MO has been trying to get me to switch from Tamoxifen for more than a year now. Had to go off Tamox for 6 weeks due to last surgery but am hesitant to start Femara immediately. I am exhausted already from working 11-12 hour days since returning to work and can't afford additional side effects right now.
Also can't eat much since before last surgery. Guessing stress but don't want to regain the 10 lbs I lost.
Work will ease the end of September and that would be the best time to start. What side effects can I except?
Jul 30, 2019 04:09AM Kanga_Roo wrote:Scottiemom, We all feel for you. Below is the published list they admit to, but probably others could add to it. I think I have experienced most of them, but not at the same time. Everyone will have different experiences. On the upside, it does seem to be very effective at keeping HR+ under control. Hope it works out for you.
Aug 2, 2019 09:00PM Kiki13 wrote:
I've been on letrozole for 1.5 years. Two years ago, I had my first bone density test: normal, healthy bones. Just had my first bone scan since starting letrozole: I now have osteopenia. I am active, eat a calcium rich diet, and have been taking Vitamin D but not calcium supplements (why my onc never suggested them, I can't guess). So now they want to put me on a drug to stop bone loss. Great, one more drug.
I'm not trying to scare anyone. But I wish someone had talked to me about how quickly bone loss can happen, and told me that maybe diet wasn't enough. Supposedly drugs can stop and even reverse some of the bone loss, so it's not all doom and gloom. I'm an active person, though, and this SE has scared me.
I have a total of 3 years hormonal treatment, tamoxifen and letrozole combined. This may do it for me. Up to now I've been scared enough of recurrence to try and stick with hormonal therapy, but at what cost to other aspects of my health? Weary of it all.
Aug 3, 2019 03:13PM PatsyKB wrote:I was diagnosed last year and am now on Letrozole (for a little over a year so far). It'll be part of my life for another 4-9 years. I'll share my bone-info just for general information, knowing that each of us is totally unique. When my MO prescribed the Letrozole, he ran a number of tests including a current DEXA Scan. I'd previously had "osteopenia" but the scan showed that I had osteoporosis - damn. Anyway, he was entirely up front about all the possible side effects (which are similar to to the other AI side effects as I understand it) including bone loss. My MO took the proactive steps of putting me on a twice-a-year Prolia shot and increased my dosage of calcium and vitamin D. He and his nutritionist/dietician and I discussed and fine-tuned my eating plan. (I was already largely plant-based but am now ENTIRELY whole-foods-plant-based.) We also discussed at length my physical training - I do something every day and am religious about that because resistance/weight-bearing exercise can rebuilt bone.
Aug 3, 2019 03:14PM PatsyKB wrote:
Kiki13 - p.s. I will say that I count myself fortunate in that the Prolia has not caused me any perceptible side effects.
Aug 3, 2019 04:33PM - edited Aug 3, 2019 04:34PM by 1stronglady
I have a question for those of you suffering from horrible bone and joint pain from the Letrozole. Has anyone asked their oncologist to be tested/checked for rheumatoid arthritis?
Aug 5, 2019 08:05AM Kiki13 wrote:
Hi Patsy, good to see you! Thanks for your posts - many good takeaways for me. I've calmed down about the bone scan results and am ready to tackle it, like everything else we do. You know, this just shows me you can't take your eye off the ball with ANY aspect of your health while on these drugs. I've been so focused on managing joint pain and hot flashes as naturally as possible, and because my bone density wasn't an issue before, it wasn't something I thought about.
It sounds like I will have to try Fosamax first. If I don't tolerate it well, then insurance will approve Prolia (thank you, insurance companies, for not letting us have the best option right out of the gate).
I am glad to hear you are doing so well, Patsy! The numbers do tell the story. I had a naturopathic doctor when I was first diagnosed, who worked in conjunction with my onc. She was wonderful on the lifestyle and diet issues, but is no longer in the area. Your suggestion for a dietician or lifestyle doc is a good one. We can only figure out so much on our own!
Aug 8, 2019 02:46PM Tiredstage1 wrote:
I have been on Femara for 2 months after having an allergic reaction to Arimidex and thrombophelbitis with Tamoxifen. Fatigue and joint pain have begun. Does this improve with time? 5 years of this seems impossible. I experienced hair loss with Tamoxifen. Biotin helped with this but now I am concerned it is beginning again on Femara. I know I am fortunate that I am Stage 1 and others have much more serious problems than I.
Aug 8, 2019 04:45PM MAM56 wrote:
It seems everyone experiences different side effects. I tolerated Tamoxifen-generic well for 5 years. Oncologist switched me (1 year ago 5/18) to Arimidex-generic which I am supposed to take for 5 years. I immediately became severely fatigued and suffered joint pain, knees and hands.
She switched me to Femura- generic in 8/18. Recently my cholesterol sky rocketed to 340. That's 140 points over my cholesterol level the previous year. Yes, a side effect of Femura, but neither Onc or PCP think Femura is the reason??? Now I'm on a statin. 😕
My current issue is a cyst on the base of my thumb causing “trigger" thumb and a lot of pain. Another known side effect of Femura. 🙁 I'm am seeing a hand specialist in 2 weeks. He was booked for 3 weeks.
I'm beginning to wonder if it's not worth the side effects.
Aug 8, 2019 06:38PM 1stronglady wrote:
I too wonder if it's worth it :(
Aug 8, 2019 08:00PM PatsyKB wrote:
MAM56, thanks for asking your question. First, I’d strongly suggest talking to your oncologist or primary care physician about how to reduce the risk of osteoporosis and further bone loss - I’m very happy with my course of treatment but I didn’t make these choices all alone.
I was already taking a calcium supplement and vitamin D but when I went on Letrozole (generic Femara), my MO raised my dosages: Calcium 1500 mg (not all at once of course) and Vitamin D3 5000IU (again, not all at once). I take NatureMade Calcium with Vitamin D3 (600mg calcium/400IU Vit D3) twice a day. I take Kirkland Vitamin D3 2000IU (50mcg) twice a day. Those supplements in combination with the multivitamin I take (Centrum Silver for Women) PLUS my honestly excellent diet supply me with more than what I need in the way of calcium and D3.
Remember that I also have osteoporosis (newly diagnosed a year ago, before ever starting Letrozole) and that I am also on twice a year Prolia shots to counteract/reverse/stop that.
I work out daily, including weight training, yoga, flexibility, cardio, weight-bearing. And I eat a whole food plant based diet - I’ve transitioned over the past 3 years (before breast cancer) from MOSTLY plant-based to ALL plant based (no animal food or products).
My MO didn’t recommend any brand of supplement over any other and it’s not a prescription supplement and, to be honest, I try not to overthink things like that.
Aug 8, 2019 08:03PM PatsyKB wrote:
HI 1stronglady - I can only speak for myself, but in my book, taking Letrozole - which is the only choice I have - is definitely worth the risks of side effects. I will admit to being fortunate so far but I am also taking every precaution: whole food plant based diet, rigorous and regular working out, increased calcium/vitamin D, Prolia shots for the bone loss, the whole shooting match.
If I didn’t have Letrozole (or any of the other AIs) to inhibit the estrogen in my body, I’d be screwed.
Aug 9, 2019 02:57AM Lanne2389 wrote:
If there is a pharmacy/pharmacist associated with your treatment center or MO, you can ask to speak directly with the pharmacist on questions about supplements, dosages, etc. They can also help with drug and supplement interaction info, and may know a bit more on these subjects than our MOs.
Aug 9, 2019 10:03AM Simbobby wrote:
I have been on letrozole for a year and a half and have recently started having side effects in the last three months - thinning hair, lack of energy, and achy bones (which mat actually be arthritis). Also an occasional UTI. My MO also recommended vitamin D and calcium as he discovered osteoporosis from my bone density scan when I started taking letrozole. Also getting prolix infusions for bone loss every six months.
Aug 11, 2019 06:43AM cbaird99 wrote:
Morning all! A couple of questions....I have been on Femara for 4.5 years. I think (?) I am experiencing some hair loss over the last few months...would it take that long tho? Perhaps just increasing as a combo of age (62) and no estrogen? Also I am planning on stopping Femara at 5 years, I figure the onco will try to get me to extend and I cannot see myself agreeing. How are you all handling this decision? My cancer was 1A, surgery and radiation, 11 nodes out all clear. My osteopenia which already existed has increased so I am on Prolia for the last 2 years, can this perhaps increase hair loss as well?
Aug 11, 2019 10:49AM lala1 wrote:
I was supposed to swap from Tamoxifen to an AI when I had my hysterectomy but my BS suggested I stay on T because I was doing really well on it. He felt that the SEs from an AI outweighed the benefits which would have been a percentage point or two. So I stayed on T for my 5 years then was lucky enough to be able to stop it due to my BCI results. I'd say if you do well on T and your doc lets you stay on it, why not? My cancer was never really pinpointed as to stage. One doctor said 1B and one said 2A because my tumor was 2.0cm but only on one measurement. The rest were lower. I didn't have node involvement nor chemo or rads. So I'm considered "lower risk" for recurrence. Maybe that's why everyone was ok with my sticking with Tamoxifen. My BS said he loses more patients when swapping cause they quit meds altogether.
And as to calcium, I find it interesting the different ideas from doctors. All of mine asked that I not take it as a supplement because it tends to end up sticking to your arteries and actually causing heart problems. So I get mine from food and milk. Wonder if I should ask another doctor......
Aug 11, 2019 01:06PM - edited Aug 11, 2019 01:10PM by GrandmaV
cbaird99 - When I got to the 5 year mark my onco wanted me to go another 5. Did the BCI test and results said high risk and high likelihood of benefit. So I reluctantly agreed to stay on while I made my decision. After 6 1/2 years side effects were debilitating, took a month break then switched to anastrozole, with no improvement. I stopped at 7 years because my QOL was nil and the ASCO guidelines included 2 studies that showed 2 years extended treatment was just as good 5 years. One of those included those with high risk/benefit and no difference for them as well. So in my case (I'm not recommending this course of action for others) I felt comfortable stopping. I've been off now almost 3 months and side effects have improved a little, but I think it takes a while. The inflammation and swelling it causes in the sheath of the tendons has been there 7 years, so it makes sense it takes time to go away. (I hope it does). So maybe just take it a month at time past the 5 years and see what happens. See how you're doing and if more studies come out. By the way, I did not have hair loss.
edited to add: my bone density stayed the same.
Aug 11, 2019 04:13PM PatsyKB wrote:
kiki13, besides talking to a nutritionist/dietician, do your own research using any of the outstanding books, websites, podcasts available - check credentials and stay away from anything fad-diet-ish or not supported by science and medicine. I'm constantly learning (vegan/plant-based podcasts are my current "ear-crack") . I strongly believe in traditional western medicine/science especially when it is augmented by the important lifestyle choices like plant-based diet (or at least MOSTLY, with no meat or poultry), reduction of stress, increased exercise, and strong social/friendship ties. Stay strong. Stay in touch!
Aug 11, 2019 04:55PM MAM56 wrote:
Lala1 and GrandmaV and anyone else,
Is the BCI -Breast Cancer Index test the same as the Oncotype test?
Did you have the test at the 5 year mark or when first diagnosed?
After 5 years of Tomoxifen (with no issues) and 1 year of letrozole (with many issues) I am contemplating stopping the meds. My oncologist has never mentioned the BCI when I ask about stopping.
GrandmaV- great news that your bone density stayed the same! 😊 Osteoporosis is one of my biggest concerns.
Aug 11, 2019 09:08PM - edited Aug 11, 2019 09:16PM by GrandmaV
MAM56 - I had the BCI test after 5 years. It's the main reason I continued 2 more years. The original tumor, or at least some of it, is sent to and tested by Biotheranostics. It is a different test from oncotype test.