Doing Well on Aromatase Inhibitors (AIs)

Ingerp

seawell--I'd read that a lot, about the lashes all being on the same growth cycle following chemo, and it was true for me. About every four months there would be shedding, but less and less each time. After around a year I think it was back to pretty much a normal growth pattern, although I'm now about 19 months out and I don't think they've ever gotten quite back to what they were pre-chemo in terms of length/fullness (although I'm 62 and fair--I never had great lashes to begin with).

miranda2060

I'm afraid I'm NOT doing that well on Femara. I switched from generic letrozole a while back because I was getting blisters/welts on my palms. I thought maybe it was an allergy to the fillers in the generics. Femara had been OK, until a couple days ago I got a huge outbreak of itchy red bumps -- on fingers, palms, arms, legs, even buttocks. The itching has been driving me mad. I stopped taking the Femara and have an appointment with my MO tomorrow.

I can't imagine what she will be able to do at this point. I will bring her a copy of a journal article I found that talks about this side effect of letrozole. I don't really want to start another AI (have already been through anastrazole). Have about three years to go....

Rwns

Diveslikeag, giddyupgirl-I also take magnesium for both aches/cramps and sleeping. Has helped a lot!

miranda2060

Not that anyone responded, lol, but I'm still suffering from the disfiguring blisters all over my hands, arms, legs, elsewhere, most likely caused by letrozole

Because of COVID, I could not be seen in person at the hospital, so did a Zoom visit with an internal medicine doctor. They have suggested Benadryl, and said it would take 7-10 days to lessen, as the letrozole leaves my system. Meanwhile, it's hard to go around with angry red blisters all over.

Leaves me with a decision about what to do regarding my future with AIs.

LillyIsHere

I'm sorry for not getting back to you Miranda but I assume none of us who read your message had a skin allergic reaction to letrozole. It seems that's what you have and that's why they suggested benadryl. Can you ask for another type of AI?

Peregrinelady

I agree. It could be a filler that you are allergic to. And in all the time I have been reading this thread, I have not seen this reaction. Let us know how it goes.

miranda2060

Thanks. Been feeling kind of alone on this, and the "virtual visits only" treatment doesn't exactly make me feel well cared for.

I had a similar reaction on generic letrozole, and now much worse on Femara. Have already been on anastrazole and the only one left is exemestine. I'm not sure at this point what I will do.

MikaMika

I'm sorry about your allergic reaction. As I remember from my experience (not related to BC), it is very difficult to identify not common allergens. Can you see dermatologist/allergist for consultation?

Also, did your doctor exclude autoimmune desise as a reaction on treatments?

CeliaC

miranda2060 - Had not heard of anyone yet with the horrible allergic reaction you are having, so did not post. Please do not think we have abandoned you. So sorry for your pain/suffering. Healing thoughts coming your way and hopes for relief.

LillyIsHere

Miranda, I hope you can get the 3rd option and it will go smoothly. That's why there are 3 of them

I had skin reactions to lupron and the nurse told me it was unusual. I hope you are feeling better.

miranda2060

Thank you, friends. I heard from the internal medicine doc, who sent my pictures to dermatology, and they are supposed to get me an appointment (for some reason, at the Cleveland Clinic, it's really hard to get an appointment in dermatology). They speculate it could be shingles, so I am taking medication for that in case it is. I do tend to blame the AIs for whatever is wrong, and it still could be that, but clearly it's rare.

I'm wearing cotton gloves because my hands look so nighmarish. Mask, gloves, look ready to do some kind of holdup!

Thanks for your caring thoughts.

Runrcrb

miranda, an additional avenue to pursue is allergy to one or more of the fillers. It may be hard to track down but ask your pharmacist to contact the manufacturers of the pills and get a complete ingredient list. If there are other meds you take successfully you could compare in search of new ingredients that might be the culprit. I’m sensitive to corn and know within hours if a medicine I’ve taken has corn starch in it. sorry you’re going through this.

LillyIsHere

Here is the list of femara inactive ingredients list:

Colloidal silicon dioxide, ferric oxide, hydroxypropyl methylcellulose, lactose monohydrate, magnesium stearate, maize starch, microcrystalline cellulose, polyethylene glycol, sodium starch glycolate, talc, and titanium dioxide.

https://www.rxlist.com/femara-drug.htm

I did contact the company and complained for one ingredient, talc, but they were very rude and told me to ask my MO. I can't believe talc is used as ingredient, considering talcum lawsuit!

CeliaC

Maize is another word for corn. So maize starch = corn starch. Very interesting about talc being used as well.

Miranda - If you ever had chickenpox, shingles could be a possibility. Hope you find some answers.

Ingerp

Miranda--I'm not a doctor but what you're describing sounds nothing like shingles to me. When I had shingles, I had to do a forehead slap after a few days of outbreak when I didn't self-diagnosis sooner. Shingles is related to one nerve, so will only cover a "quadrant" of your body (mine was upper half on the left). If you have this on both sides I don't see how it could be shingles.

miranda2060

Thank you all for the helpful input. Ingerp, I have been taking medication for shingles, and the lesions are fading, but what you shared is very interesting. I did have chickenpox at 25, so shingles could happen, but I did not know it was limited to a quadrant.

I wouldn't know without a biopsy what caused the outbreak, so right now it's an open question, especially as the Femara is concerned.

Thank you, excellent friends ♥

HikingLady

miranda2060 sending good wishes, and I have no clue about what you're experiencing. And, that's why I didn't write anything sooner, since I had no relevant experience. SO SORRY you have this going on! Shingles often presents with deep nerve pain, such as shoulder blade quadrant, etc., and I haven't heard of it presenting with blisters all over, as you describe this. I hope you get good answers! I also haven't read of this type of thing as being an AI reaction, so do investigate all possibilities with good specialists.

Lots of PCP's urge us to get a 'titer' test to know our ongoing immunity to MMR, since some immunities don't last a lifetime, so hopefully your MD's are investigating all possibilities, such as, could this be one of those (rubella?). For skin things, being seen in person by a specialist seems super important. Mask up and have a true specialist follow up on this with an in-person look, is what I'd do.

I've gone through many allergic reactions, unfortunately! For instance: penicillin (body-wide rash/hives), same happened during chemo as a reaction to a taxane, twice! Anyway, I feel your pain and send warm wishes to you...

miranda2060

Thank you, HikingLady. I will see about an in-person examination. I have read one article about lesions caused by letrozole, and passed it along to my MO.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4129361/

IBJUSTFINE67

I just got switched from Tamoxifen to Femara. I am only a week in but i am hoping it will have less side effects than Tamoxifen. I will let you know!

Laurencl

Does anyone use CBD for the joint stiffness associated with AIs?

CBK

I use oral tincture CBD. Nuleaf brand. You have to play around with dosing. Beware of cotton mouth associated with it. I’ve started to cut back on dose and add in a mouthwash for dry mouth.

CBD can be effective for joint pain!

havefaithtoday

Seawall, I just noticed that my eyebrows are starting to thin out again...darn, they had just started to fill in last month. I'm almost 4 months post chemo. Wonder if this is a chemo issue or a AI issue.

seawell

Havefaith......Darn it!
I’m not sure what’s causing thinning of brows and lashes several months after chemo. Possibly AIs?

My lashes were pretty long in April & May....now they’re short again but there’s a lot of them. I got extensions in February which I did not continue, and that may have effected them in a negative way. I’m figuring it might be a year or two before everything settles down and gets back to normal growth patterns. Can’t tell with my brows since I microbladed, which I recommend.
I have a bottle of Latisse which I might try. I think your brows will come back around again!

KIDI919

Laurencl: I use a topical CBD cream which helps. I get it at a "head" shop. It is made by Medterra. It's made in the US. I have tried the oral but didn't like it as well. Kind of expensive but you only need a little.

Ingerp

havefaith/seawell--you'll go through several cycles of shedding but it'll get less and less each time. Normally we lose lashes/brows randomly but chemo puts them all on the same growth cycle. It's typically every four months or so. After about a year you won't notice it any more.

seawell

Ingerp.....thank you for the reassuring wordsthat this too shall end. 💕

At the end of this August, I will be at one year post final chemo. 👍🏻

LillyIsHere

Seawell, I wonder how come you got chemo for ILC, Stage 1A and no nodes involved. It seems that MO are not on the same page of treatment during similar cases.

seawell

I had a high onco type score😟— 30. Everyone was shocked, including me. I did genetic testing to see if I had some genetic reason ....but no....everything was normal...

LillyIsHere

Seawell, I was told Oncotype is not valid in ILC cases. I bet if you checked with MOs I had they would advise differently. I assume it may be safer to have chemo done and out of the way.

Annie60

Can I ask what everyone, if needed, is taking for insomnia? I'm handling letrozole pretty well, but the insomnia is getting bad. I just want to sleep.