FEMARA

I had the hives on my hip, upper side legs, the bottom of my feet(different times)(they would swell on the pads of my feet and get red)and on my left arm at the wrist and pad of my hand and on the right side my upper arm. One would clear up and another would show up, except at the beginning on my hip and upper thighs, they were the same time.

It was very strange

I didn’t even mention it to my oncologist, because I went to see my dermatologist the same day and she went ahead and changed my allergy medicine to 2x a day plus a Benadryl at night. If that didn’t work to help clear them up, she would take a skin sample. I really think the steroid helped with the swelling and little itching that I had. When I go back in August I’ll ask the oncologist about the letrazole and hives

Femara is the brand name. Letrozole is the name of the drug itself, so it's the generic name. There are multiple brands of generic Letrozole available.

kkayet - some of my SE's got better and others got worse. Definite hair thinning although my stylist says the texture is getting better. Try adding Calcium with Vitiam D and claritin for the joint pain. Walking helps and I play 27 holes of golf most weeks. Be certain to keep hydrated. I also take over the counter pain medications on a fairly regular basis but I also have worsening arthritis which I blame on age and not AI's.

Hey there y'all! I'm just stopping through to say hi. I've been on letrozole for 2.5 years and things are generally going well. My endurance isn't what it used to be and I have to write more stuff down, but no joint pain, no rashes, no hair issues, preexisting osteopenia hasn't worsened, none of the things I was so worried about.

I realized that I should stop back by here because the people who come here a lot are more likely to be people looking for answers because they are having side effects. People like me who are doing great just go on with our lives and forget to check in. Anyhow, for those of you contemplating an AI or newly started and wondering if you will get side effects, I would say that many people either don't or their SEs are manageable.

Best to all of you!

SR

SusanRachel and RRshannon, I'm glad to hear you have both been virtually SE free. That's fantastic!

I would caution those reading, however, that the conclusion that few people get side effects may be largely based on your uneventful SE personal experience. ("I would say that many people either don't or their SEs are manageable") 

AI's were like poison to me so I quit them... EXTREMELY bad. I have read hundreds of comments about horrible SE's since joining BC.org. In fact, I have read very few comments about no SE at all. Some people say they have been able to manage them - great! I could not and I know of many others who simply could not take it any longer.  

I've also read several studies, reputable articles and blogs about AI's and their SE's and have found that SE's are very common. Even Komen admits AI SE are very real and common: https://ww5.komen.org/BreastCancer/SideEffectsofAromataseInhibitors.html

Again, I think it is fantastic that you have had such a symptom-free journey - I really do wish it was the case for each and every one of us. Yet I would consider you both two of the extremely lucky ones. I wish I could proclaim the same, for my inability to endure the SE's leaves me with the fear of recurrence. I was extremely positive in the beginning and I denied it was going to happen to me, but it did and I simply could not go on. It is scary, but I chose to live the life I have without the painful SE's. I simply don't want to put unrealistic expectations in the discussion for those who have yet to start. 

Thank you for understanding why I felt compelled to speak up.

I think it is important for both 'sides' to be aired about side effects on AIs. One must consider that each individual handles medications differently, emotionally, physically, and ideologically. One should also consider that those who are suffering side effects are more likely to post on these sites, looking for answers. Those who are managing well, tend to not post since they are not looking for solutions.

Personally, I was prescribed anastrozole initially in 2012. My SEs were-evident within a few weeks. My joints did not respond well and it became difficult to manage. Since I am stage 3 and was terrified of a re-occurrence, I was ready to soldier through the 5 years. After two years of difficulty, my MO was not willing to continue and she switched my prescription to letrozole. I was thrilled to see the extreme SEs slowly go away. While I am in menopause (no hormones) and feeling the effects of having no hormones, I can easily manage the new 10 year plan. Yes, sometimes my joints ache, but they feel much better the more I move. Other old age issues are present such as thinning hair. bone loss, and skin changes. Considering my age (63), these issues were expected at some point anyway.

For many, AIs are the only option for treatment after surgery, chemo, and radiation. If a friend were to ask my my opinion, I would suggest a trial prescription of one or all three AIs. In my opinion, it is preferable to at least try each to see if there is a marked difference in how a body responds. Apparently, any SE due to treatment will go away once the treatment is stopped. I would hate to have regrets if a re-occurrence were to happen and I didn't try everything available to stop cancer.

If someone stops posting how does anyone know why? Do they do an exit poll? I don’t think so.

I think the advice given to Sketcher1 by the moderator was not meant to be insulting or dismissive in any way. It is what it is. People come to this site, while in treatment, to find support and answers to their questions and concerns. Those that have few or no SEs tend to 'move on'. It isn't a judgement or condemnation of those that are still dealing with the effects of treatment. In fact, I think some SE-free folks avoid posting in threads like this out of respect since they have nothing to add to the discussion.

Many of the women that posted in threads I frequented while in active treatment no longer participate in these threads. It is common to 'move on' after a while. My sister, who joined in 2008 no longer visits this site as she is finished treatment and has put cancer behind her. I only visit occasionally to check on new treatments and information that might be discussed here. So in that sense the moderator is correct - those that are SE-free probably won't be visiting a thread discussing SE. This should be considered when reading each contribution and making decisions for one's own treatment choices.

All I was saying is it’s an assumption as to why they move on. I believe a lot left when they realized our posts are showing up on the Internet searches. I had a bad experience with Letrozole but I’m still here. 50% don’t make it to 5 years on Letrozole. Maybe if they let us have the brand Femara for a fair price that would be different. Anyways there are plenty that quit and are still here. I’m not interested in arguing about something that can’t be proved, I was just pointing it out.

Found this yesterday, here’s an excerpt:

“Aromatase inhibitors are usually given to post-menopausal women, and prevent oestrogen from being produced in other tissues. Although the women's ovaries have stopped producing oestrogen, some of the hormone is still made in several other tissues by an enzyme called aromatase. The medication prevents this enzyme making oestrogen.

However, around 30 per cent of breast cancer patients taking aromatase inhibitors see their cancer eventually return. This returning cancer is usually metastatic, meaning it has spread around the body, and the tumours are often now resistant to aromatase inhibitors.

https://www.sciencedaily.com/releases/2019/05/1905...

I respect anyone's decision to say that the SE's just aren't worth the QOF issues. I have certainly thought about it more than once. For me the worst was all day headaches for days on end. I switched from arimidex to femora and mood got much better although hair loss worse. I have also taken a couple one week vacations from my AI's. All three times there were no more headaches when I resumed.

Thanks for coming back on and saying that! I will be starting ibrance + femara soon and am very worried about SEs. Anyone have a comment on immune system issues? I am a preschool teacher and LOVE my job but am surrounded by germs. Will I be able to keep working if I am very careful?

I had 5 years of Tamoxifen therapy. Oncologist then switched me to letrozole a year ago. I am supposed to take it for the next four years for a total of 10 year of hormonal therapy.

My current issue is that my cholesterol level has Increase from 210 to 340 in the past year that I have been on the letrozole. Now, oncologist wants to add a statin for my cholesterol issue. I do not want to take another drug!

Oncologist said I have the option of going back on Tamoxifen for the next 4 years. It would increase my recurrence percent up to 3%. Her preference is to stay on the letrozole and add a statin

I don't know what to do??!!??Anyone else have a huge increase in cholesterol level from letrozole???

Have you tried to lower your cholesterol with better food choices naturally?

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.