Topic: FEMARA

Jul 11, 2019 05:58PM 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 06:15PM 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 25, 2019 10:28PM 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 30, 2019 06:32AM 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?

Thanks

Scottie

Aug 3, 2019 12:00AM 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 06:14PM 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 5, 2019 11:05AM 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 07:45PM 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 10:21PM MAM56 wrote:

PatsyKB ~ Did your dr prescribe a calcium supplement or are taking one on your own? If so, would you share what it is? Osteoporosis is a great concern of mine as a side effect of Femura

Thank you!

Aug 8, 2019 11:03PM 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 05:57AM 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.

Lanne

Aug 10, 2019 08:19AM - edited Oct 1, 2019 02:26PM by Mavericksmom

Aug 11, 2019 01:49PM 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 07:13PM 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 12, 2019 12:08AM - edited Aug 12, 2019 12:16AM 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.