ILC on Femara; anyone with GI SE

AKColleen

I was diagnosed with ILC May 31, 2017. I had partial mastectomy and radiation. At the time I had the partial mastectomy, I also had a partial gastrectomy for stomach mass they though may be CA. Thankfully it wasn't. I started brand name Femara Sept 2017. I had searched boards and many said brand Femara had less side effects.

Ever since I began Femara I've been nauseated. I've used Hemp Oil which really helped knock it but it would be a daily occurance. Then I had problems with constipation ( I tried everything, colase 100mg daily along with evening Senekot, MOM, Mineral Oil, You name it I tried it) I ate mostly vegan, fruits, veggies some fish ....the constipation got so bad to the point that I could only "go" by aide of enema!! Then I'd get so nauseated from constipation..I'd throw up almost weekly, then use enema, then recover and start all over again!! I had told my MO about all this but she said it's nonsense that Femara caused n/v/c. I was to the point of wanting to take chemo rather than AI.... Finally my MO told me to stop Femara and get my gut working again. It was hard to decide if the partial gastrectomy had any contributing factors to the n/v/c but my BS thought the cause was Femara.

So I've been off almost 2 weeks and not once have I had nausea, or vomiting. Constipation is almost gone! I've used magnesium which seems to have really helped regulate me. I still have to take Colase daily in the AM and magnesium at night.

Anyone else experience SE like this with Femara? My MO wants me to go on another AI soon....I'm wondering if I should just try Femara again with what I have learned to keep my gut working last week.

IF you experienced SE from Femara like this...do you have suggestions that helped? I fear going on another AI, even Femara. But it's that or chemo....

Thanks for any advice.

Icietla

Welcome, AKColleen.

I am so sorry about your health problems.

Nausea, Vomiting, and Constipation are listed among the known side effects of Letrozole.

https://www.drugs.com/sfx/letrozole-side-effects.html

I have had some Nausea and Vomiting from Letrozole -- more often early on in my treatment, but only rarely since. Some of my Letrozole side effects have phased in and out, but so far, all of them have been only temporary.

https://community.breastcancer.org/forum/78/topics/762788?page=1#post_4961641

.>>I'm wondering if I should just try Femara again with what I have learned to keep my gut working last week.<<

I think you should try it again. I understand that one is believed to be the best medicine for us (we are diagnosis twins, see) if we can tolerate it. My Oncologist says that if I should have intolerable side effects from Letrozole, Exemestane would be the next choice for me.

AKColleen

Thanks for you reply Icietla, and links

I was thinking Aromasin might be a good one to try next if Femara keeps me throwing up and constipated.

I've had hair loss but minimal bone pain. I have osteoarthritis and osteopenia...I'm on IV Zometa q 6 months. But I've been consistently having n/v/c with Femara. I may give it another chance. I'll see what my MO says.

Icietla

My baby has had severe colorectal dysfunction all his life. A few weeks ago we were able to discontinue his syrup laxative. It has taken a lot of trial-and-error dosage adjustments, but he has been doing well enough with just his MIRALAX laxative since. He gets 1/6 teaspoon, first dissolved in some water, mixed into each 3-ounce can of food.

Icietla

Oh dear. It says here that Zometa can cause Nausea, Vomiting, and Constipation.

https://www.drugs.com/sfx/zometa-side-effects.html

I wonder if those side effects could be ongoing between treatments (?).

Icietla

You are welcome. I hope you can find a way to manage okay with an AI or other anti-hormonal medicine. They are wonderful medicines.

AKColleen

Icietla, Glad your baby does well with Miralax. It makes me nauseated. I didn't know Zometa has N/VC SE. I only get it every 6 months...I haven't had it since October, but plan to when I get back from vacation in Florida. I'm a bit late getting it due to our vacation. I didn't want to be sick while gone. I'll have to check and see how long their the SE are...never thought of Zometa.

Thanks for all your replies. I hope I will find an AI that I can tolerate better...

Anonymous

I take 1500 mg of magnesium (sans any calcium additive; I take that separately) at night, in capsule form (not rock-hard pill form) and it does keep me regular.

You might consider that, because magnesium has other benefits, like keeping our CNS regulated, etc.

Claire in AZ

AKColleen

Icietla, it feels so good not to have n/v/c since on vacation and off Femara! It's been 6.5 months of straight constant nausea, constipation and almost weekly vomiting. So I'm not too excited to try going back on AI's but I know I need to take something. My first MO didn't sent my tissue for ONCO as I requested because she forgot!! I insisted she send it and when it came back, ONCO was 27 and she said OH MY had I known this we would have started chemo right away. I saw a 2nd specialist at Virginia Mason Med Center who just does Breast Ca Oncology and she said with AI and IV Zometa the stats show the same results as taking chemo. So we opted for the AI. But after chemo most are on AI as well so I have to find an AI that works for me. My age 64, I really don't want to do chemo if AI's will give the same statistical results for recurrence. She put ALL my facts into something online the get what is recommended for my Dx and tumor info.

I may give Femara another go and if it does it switch to Aromasin.

AKColleen

claireinaz... thanks. Right now I am taking 1000 magnesium - I think I will up the dose. I was taking calcium but quit cause that too causes constipation. I was thinking of taking liquid Cal/Mag/D3. Some have said the liquid calcium isn't constipating. I already take D3 5000 IU daily.

Where in AZ do you live? We will be in Tucson for 2 months come this fall.

AKColleen

ClaireinAZ...what brand Magnesium do you take?

AKColleen

claireinaz, what type of magnesium do you take? There are so many I don't know which one to use for helping with constipation? Glyconate, oxide, aspartate, citrate, taurinate, with or without silica? So many to choose from. What do you use? Thanks, Colleen

taag4

HI AKColleen

I have taken them all Aromasin Femara and now I have just been taken off Anastrozole. Its been four years and I think my most complained about symptoms were bone and joint pain, along with stomach issues and constipation, some days the headaches were terrible. Each medication was similar with its problems. Some things were worse on one over the other. I was able to stay on anastrozole the longest. They recently took me off because they were starting to have to prescribe other medications just so I could stay on it and my oncologist thought along with myself things were just getting out of hand. I found with the constipation I had to take a stool softener and watched what I ate, then when I knew things were getting out of control I would take a laxative for a few day and get things back on track. Ive been off my meds for two weeks now and still find my symptoms are bothering me. The bone and joint pain is out of control. I was told it will take 8-10 weeks for it to be out of my system. Ten weeks can't get here soon enough.

Gracejoy

I used to have constipation problems with AIs also but not any more. Taking laxatives makes dependence on them.Here what helps me naturally be regular, taking probiotics with meal for two weeks,help build a good gut bacteria and therefore ease constipation. Also I drink two cups of warm water and eat two dry apricots first thing in the morning and then wait one hour before I eat breakfast.Also I stop eating snacks about two hours before I sleep. I also eat 3-4 prunes and drink a glass of water before I go to sleep. I try to drink 8 cupsof water/day and eat lots of leafy vegetables and fruits. Walkıng 30/mın per day or doıng any exercise helptoo. I hope this helps.

Sallyomally

Just started four days ago and am already experiencing issues with constipation. Thanks for the advice, ladies. Ordered some magnesium for sciatica pain, and am glad to see it will help this as well. Gracejoy, your plan sounds promising.Will give it a go. Good luck, everyone.

AKColleen

Taag4- Thanks for your comments. I was taking stool softener in AM and laxatives...sometimes 2 different ones nightly and constipation was horrid. My Doc finally took me off Femara and it was so nice to have a break! My gut is back to normal and yesterday I began Aromasin. I'm hoping it will not give me horrid constipation. I'm still taking something 2x day plus oral magnesium/calcium/D complex!

Sallyomally - I hope you have better luck than I did.

GraceJoy - I was also in addition to taking all these laxatives, magnesium, bowel softener - I took prunes daily 5-6 in the evening. I just can't tolerate Femara. I saw Aromasin had the possibility of diarrhea for side effect. I never thought I'd hear myself say this but I hope that is one of the side effects I get cause it will probably just make me normal!! hahaha. Good luck to us all.

AKColleen

Gracejoy - I have increased my water consumption and also my fruit. I eat plenty veggies. I also take a probiotic daily ( not with each meal ) and i've done that for years. I've even changed types of probiotics. I have a slow gut, I had a test to see how fast my transit was. In addition I have a what is called a "tortuous" colon. then I had surgery 2 years ago for huge liver mass, this year when I had my partial mastectomy, had a partial gastrectomy for a stomach mass. So I have lots of port holes in my abdomen that could be causing adhesions making my guts not right either. I am seeing my gastroenterologist next month to see if he has any other ideas.