Doing Well on Aromatase Inhibitors (AIs)

Runrcrb

havefaithtoday,

Regarding depression, I started AI on April 2017 with no change in mood. I changed AI in July, again no mood changes.

I have been taking an antidepressant since Feb 2018. I attribute this to 1) my husband’s death in November 2017 and 2) my empty nest as both kids went out on their own around the same time. I’m working through a different empty nest experience than I had planned. Can you say dating for the first time in well over 30 years? Haha

So, watch your mood but don’t expect AIs to cause depression.

cm2020

akmom... Why were you told not to eat flax seeds? I eat at least 2-3 tablespoons every morning on my hot oat bran cereal. My oncologist didn't give me any food restrictions.

Mouse57

My MO did not mention any diet related things and I forgot to ask.

this article actually suggests flaxseed in beneficial but there is no conclusive research and suggests moderate amounts

https://www.oncologynutrition.org/erfc/healthy-nutrition-now/foods/flaxseeds-and-breast-cancer

I am on anastrozole 45 days now N o side effects except mild hot flashes. Stiff in the morning but I already was! I was going to start a yoga class but everything is cancelled now

cm2020

Mouse57 Thank you for the article. Wow, I had no idea. I will definitely be sure that I am careful with how much I add from now on. I also need to make a note to talk to my oncologist about it when I see her later this month.

akmom

cm2020, I just double checked the handout I got from the Cancer Agency (link below). It lists natural health products that contain hormones, including flaxseed but “not including flaxseed oil". However, I see now that it refers to supplements, rather than food sources. It even says “food sources containing the above substances do not need to be restricted during cancer treatment". But then it adds that “the potential benefits and risks of foods such as flax and soy, which contain plant estrogens, are not well known at this time."

Confusing! Maybe my doc thought it best to err on the side of caution. Mouse57, thanks for linking to the article on flaxseed; it probably has more up to date information.

http://www.bccancer.bc.ca/drug-database-site/Documents/NHPandBreastCancer2008.pdf

lala1

As to flaxseed, my MO was very comfortable with me taking flaxseed but he's asked that I take 1 TBL instead of 2 just in case. But he he specifically asked that I not take flaxseed oil. He feels it is much more concentrated than the seed without the benefits and thus too concentrated for us BC folks.

ThreeTree

The FoodforBreastCancer site has a good discussion on flaxseed and notes many studies. It is recommended on that site.

https://foodforbreastcancer.com/foods/flaxseed

cm2020

Thank you all so much for the info on flaxseed. It has been very interesting to read. It is also somewhat confusing to try figure out what is safest. I do want to talk to my oncologist about it when I see her next. In the meantime I am going to make sure I don't eat more than 2 tablespoons daily. Moderation seems to best right now. Flax has so many benefits, I hope to not have to give it up completely.

The food for breast cancer site is fascinating and just full of wonderful information. Thank you so much for that link.

ThreeTree

Yes, the Foodforbreastcancer site is full of all sorts of interesting information and I refer to it quite frequently. You are very welcome for the link.

Jkeet

I just started taking letrozole and I have hot flashes, constant headache, and insomnia. I also started Kadcyla which is a Her2+ infusion. MO told me to stop letrozole so we can see if side effects are from AI or Kadcyla. Is anyone else having headaches? Also what does everyone do for insomnia? I have a 5 year old and work full time so being tired all the time is hard. Thank you!

Ingerp

Jkeet--when are you taking it? Some women found fewer sleep problems when they took it earlier in the day. A lot of us also started every other day--seemed to ease the SEs. I had some headaches early on that went away. Re: sleep, I find even a "non-drowsy" thing like Claritin helps me sleep a little better.

seawell

I wanted to let any of you who are experiencing some stiffness or achey joints of something I've tried recently with really great results. When I wake up and get up to walk, or if I'm been sitting for a long time, I feel stiff and achey. It gets better once I start moving around. This got much worse once I started Letrozole. A doctor friend recommended a high dose Tumeric softgels. I bought some thinking what the heck, I'll try it for a month. I've heard tumeric being anti-inflammatory so it couldn't hurt. I started on May 4. On Sunday May 10, I noticed thatI felt no pain or stiffness when I woke up. Well, it's been 3 days and I feel amazing. I feel about 80% better and being pain free has reactivated my energy level and mood.

KIDI919

I started Letrozole every other day on 3/19. Started taking it daily this week. I have noticed my eyebrows and lashes are falling out. I don't think my hair is doing too badly. I take it at lunch time b/c pm kept me awake. I have a headache every afternoon so I don't know if it's the meds (also taking Lexapro) or I'm just stressed out. I do have some joint pain but nothing terrible. will see onco in June unless they cancel again b/c of virus.

KIDI919

P.S. Everyone stay well and safe

pattycolumn

I have had wonderful results with turmeric. Just don't use too much or you will have bathroom issues. It really helps with stiffness and was glad to be reminded as I had forgotten to take it the past two days and feel stiff! When I had revision surgery in November, I had to stop for two weeks and really felt it. Exercise, water, turmeric and now I'm trying tart cherry liquid. Good luck all!

seawell

KID1919

Did you have chemo? My lashes fell out AFTER chemo....about 2 months later. So far, Letrozole has not caused any hair loss in my lashes, brows or head but I do notice less growth under my arms and legs which is fine by me. (I’ve been on Letrozole for going on 6 months now.)

Kamboka

Ditto on the turmeric. I started AI in December, could barely move from stiffness in January. Heard about turmeric and started it in February. Within a week, I was 75% better. It might not work for everyone, but it did for me.

cm2020

I am on Letrozole. I just started it April 26th. For those of you that have had side effects, how long were you on it before they started?

Edit: For those taking Tumeric. Where do you get it and what dose do you take?

Kamboka

I was on letrozole about a month before I started having abundant hot flashes and joint stiffness. I started on Celexa for the hot flashes. The turmeric I used in February was called Nuvana with ginger and pepper. I got it from Amazon. You supposed to take 3 capsules but I only did one or two a night and that seemed help. Just last week, I decided to try another brand that had gel caps. I will see if they work as well as Nuvana. I do like the gel caps better than the other larger capsules.

cm2020

Kamboka Thank you for letting me know. So far I am doing fine on it. However, I am still on Prednisone for chronic hives (working on weaning off as the Plaquenil takes over controlling them), so I am not sure if the Prednisone is masking any side effects or not. I hope I continue to do well on it though.

Thank you for the info on the tumeric too!

Lanne2389

Tumeric has been great for me - have used it for over a year. Read up on how to read a Tumeric supplement label - some brands are much better than other re: how much you’re actually getting. I use the Me First Living, or the HCL Herbal Code Labs brands off Amazon. Glucosamine helps too.

Lanne

seawell

This is the tumeric that the doctor recommended......

Kamboka

Seawell: I've seen that brand advertised on TV.

Lanne2389: I'll look that brand up.

I tried a different brand and it's not working well. I have two weeks more and then I'll switch to something else. I was just trying to get a brand that didn't have a large capsule. The Nuvana was really good just hard for me to swallow. I think I take 15 or so pills a day--mainly supplements.

Thanks for the references.

Laurencl

Anyone doing osteo biflex? I'm about two weeks in, not sure if helpful and the pills are huge

BlueGirlRedState

Kamkboka 0- the turmeric capsules I take are not large, and are gel, so easy to swallow. 2 is GAIA's recommended dose. They have several formulations, I like the "joint". I usually add turmeric and black pepper to a meal. I took at least one month before I noticed any improvement. There are many brands and formulations out there, I do not know if there is much difference. I started taking turmeric years ago after dropping a bottle of wine in the store (fortunately an inexpensive one). I also just started taking more glucosamine/chondroitin . At first the brand name Arimedex did not seem to have the joint issues that generics did, but lately my hands have felt stiffer, and the middle finger on the left locks up when I try to open jars or similar motions. https://www.gaiaherbs.com/products/turmeric-supreme-joint

Kamboka

BlueGirlRedState: Thanks for the recommendation. I ordered a different brand before reading your email. I'll try those for the month and see if it helps. I do know that the Nuvana also had ginger in it. I'm using a brand called AI Vitality and the gel caps are very easy to swollow but unfortnately, it's not as good as my old brand. I have tried Glucosamine but the tablets are so large. I gave up since I didn't have any immediate results.

BlueGirlRedState

glucosamine-chondroitin / - what does the jury say? Why do you take it, does it help? For several months now I reduced dosage from 2 pills to one, to help save money. Two pills gave 1.5 g glucosamine/1.2 g chondroitin. My hands have gotten stiffer, and the trigger finger on left hand worse. I also use turmeric supplement and in diet. I assumed the arimidex was finally catching up with me. I have gone back to 2 pills, but suspect if they help, I will not notice anything for seveal months. The pills are huge. I see powder and liquid forms are available. For the powder, I would need 2 tablespoons/day to get what the 2 pills give. Fillers?

lala1

I took Gaia turmeric all through my Tamoxifen days. I only took one capsule a day which was enough to see a significant change. My naturalist doctor said to start with one and take it for a month. If you get relief, then continue that dose. If you don't, then up it to 2 capsules for a month. If you still don't get relief, then turmeric is probably not going to help you. If you do get relief, stay on that dose for another month and then try tapering back down to one.

When I finished Tamoxifen, I quit taking the turmeric figuring why spend the money if I don't need it. My doctors were quick to ask me to get back on it because it's also showing great promise in a bunch of new studies that are looking into it's affect on heart health. Apparently turmeric is VERY good for your heart as well. Who knew?! So almost 8 years out and I still take it. I have swapped over to a brand called BioSchwartz. I like them both and just swap between them depending on price and availability. Both have the pepper in the capsules so I don't have to worry about adding it.

KIDI919

seawell-- no I didn't have chemo. I will try the turmeric. Some people say Claritin helps too. I have noticed less hair growth under my left arm.(rads) Too bad my chin hair won't stop growing! LOL

seawell

yeah right.....chin hair needs to move upwards to my lash line! 😂

Sad to report I think my eyelashes are falling out again. They were getting long and thick.

And now suddenly something is going on. It’s been 9 months since final chemo. I read this might happen because the lashes are all on the same growth cycle. Bummer. 😟