FEMARA

hisbld4u, you might not have any problems at all. It can't hurt to try it, especially if you know what your baseline is.

Lisap62, I still have some painful areas along the chest wall. I'm 15 months out from my last surgery. My MO didn't call it fat necrosis though. He said it's edema and can take several months to years for it to go away. I was sent for PT 7 months post surgery because I had range of motion issues. My therapist also worked on the lumps and it helped tremendously.

I am now a little more than 3 weeks off the letrozole and honestly, I'm not seeing that much of a change. I'm still having hot flashes and my hips and thigh muscles hurt. I was on vacation so I missed yoga for 4 weeks. I think that's why I'm hurting. My sleep is better and my double vision due to dry corneas is gone. So now I'm still debating whether to go back on the letrozole. The sleep and eyesight are big for me.

thanks nancy618 for your insight. Edema is swelling which should dissipate. Fat necrosis is fairly common in breast surgeries and injuries. You would think that the surgeon or oncologist have some plan if it is common. Guess not. I had complete hysterectomy 12 yrs ago. Hadn't had a hot flash in 20 years! I have typically 1 before or at bed and one at 6:30 am getting dressed for work. I feel lucky in that area🌞 but I am suffering with joint pain. That is why I was thinking about the claritin.

2fun thank you for your reply. I am allergic to both turmeric and glucosamine. I have lots of drug allergies including most opiates poppy allergy. I am glad you have found some relief. I also take coq10 good for those who are in stations for cholesterol. But for me the search is on! 10 years of more of these nasty little pills. But I am thankful to be BED at this point😋

Hello everyone, I'm not sure if I've ever posted here but I've been lurking a lot. I really need some help right now. I'm stage 4, MBC but have been stable for the last year on letrozole alone. Before that I was on Ibrance for 1 1/2 years. Seems my cancer is very slow growing for which I'm grateful but the SE's of letrozole are doing lots of nasty things to my body. I'm in my late 70's so already lacking estrogen for the last 27 years since chemo threw into menopause.

Right now, I have cracks or tears in my labia from the dryness. I asked the onc's nurse what I could do and she suggested the Estring. I paid a $200.00 copay and then actually made things worse trying to put it in myself. Ended up going to ER to have it removed. Long story! Anyway, my PCP just says to keep it clean and dry. Well, that's not helping much. Does anyone have any other ideas? I've also been using coconut oil when it really bothers me but I need something to help it heal. What are others doing about the dryness.

Thanks for any and all help you might have.

Faith (in the future)

That's a big no no for me as I'm stage four MBR, ER, PR+, currently stable but it's the lack of estrogen that's keeping me stable. I sure wish I could use it.

Thanks, Faith

Hi Faith,

After much research and serious discussions with my MO and my FABNO ND, I have been using a topical Estriol cream and insert a very small amount into my vagina (started at 4 times a week for two weeks now down to twice a week).

Estriol is one of the three types of estrogen in our body. It is not free-floating estrogen. And the treatment is incredibly localized and has not shown to get into the blood stream.

The not great vagina cream is called Premarin and it is made from the urine of pregnant horses. I was not interested in putting that into my vagina.

All the “experts” agree that this small amount isn’t going to bring any due harm to my ER+ cancer diagnosis. It is helping, tons!!! I felt like my vagina had completely crunched up into a dry snake skin!! Was awful. This is making a difference and it minimally invasive and I do feel that it is not causing harm. It took a few weeks to notice a difference.

I had to have it made at a special compounding pharmacy, as CVS wont do it because it is a specialty item.

You have to decide what is best for your body intuitively - so this may or may not sound like something that you are comfortable with. I have been using the Estriol for several months now (since May) and am very happy with the results.

Good luck!

faith-840, my gyn recommended replens. It is over the counter. I haven't tried it yet as dryness hasn't gotten that bad for me.

My onc recommends daily coconut oil

hi Faith!

Yes Hersheykiss got it right about the FABNO.

I am very lucky that I work in this field and so my ND was also my teacher and is a wonderful resource to me through this whole often difficult to navigate world of MBC. Where do you live? There are some practitioners that do offer sliding scale and do long distance visits. That's what I do with my teacher/ND contact. She is on the west coast and I'm on the east coast. We've Skyped and also email and I send her my medical chart notes when necessary. I can't tell you how much it has helped support me.

CVS unfortunately won't compound the Estriol. My MOs office actually was able to find a compounding pharmacy in Philly - I would have never heard of them before. I think a google search would turn up one on your area or maybe you could have them FedEx it to you? The Estriol was not covered by my Medicaid but wasn't too bad, it cost $45. And it has so far lasted me a few months. I think I have at least another month of doses left. It is so gentle and I seriously have a much healthier vagina, fluid/moisture-wise. I have had many women on this site tell me to use coconut oil - but I don’t think they understand the level of dryness...coconut oil won’t cut it for how bad this had gotten for me. I confirmed this with my ND and she fully agreed that the vagina needs something stronger. It is the lack of estrogens in the vaginal tissues that causes it to basically dry out and become painfully dessicated at a deep epithelial tissue level that coconut just can’t reach. I wish coconut oil could! Would be so amazing if it worked! (And less expensive!

I also TRY to remember to do lots of pélvic floor exercises or in yoga as they say “ullabunda" to keep the tissues strong and from atrophying/prolapsing.

Hope this helps!!

If you need more info, feel free to PM me!

Hi:

I say this w\ caution—I have done training in acupuncture and am a retired physician (not an oncologist). The term “fat necrosis" is unfamiliar to me. Necrosis is tissue death, often removed by the body. I had a lumpectomy in 2014 w/ radiation and have taken letrozole for 4.3 years. The area of my breast that was irradiated is hard, now, and painful, but only when I press on it. Is this what you mean?

If so, acupuncture at the site might help pain. Also, in acupuncture there are pressure points that become painful w/ systemic or local problems. W/systemic problems, a more widespread acupuncture treatment can prove effective, b/c the whole system is being treated.

I was trained at Harvard-Spaulding Rehab. Hospital in Boston. The director of that program is Dr. Joseph Audette who is a PM&R physician with a tremendous interest in pain. You might be able to get some references from him if you're not located in the Boston area. The method is a Japanese acupuncture technique by Kiiko Matsumoto. I was quite impressed by what some of her techniques could do. I know nothing about Chinese acupuncture or how it might differ from her methods. But her emphasis was on treating the systemic to treat the local. She and Dr. Audette practice in Boston. There are, by now, scads of physician acupunturists that are graduates of their program from all over. Sadly, I only practiced acupuncture for a year before getting cancer.

brannelly, thanks for sharing your thoughts. I am a PT, and had a pain clinic years ago. Our physiatrist was also trained in accupuncture, but I guess I didn't know there are different "schools" of acupuncture. I'm having lots of SE from all these AI s and I'm only a year out. I found when I took a holiday from my meds, I was more normal cognitively in about 2 weeks, physically in 4. But the was only 3 months on the drug, not 4 years. I hope you start feeling more yoursrlf, and that there is resolution to all those other things going on in your life.

Just thought I'd check in again and let you know how my vacation from letrozole went..

I went off of it for 4 weeks. I didn't think there was much change, but after being back on Letrozole for just 2 days, I know see there was.

The aches and pains didn't go away completely. Still had hip issues and achy thighs. But I've chalked that up to age and lack of consistent exercise. The dryness improved. Fewer days of eye issues and my flaky ears are much better. My sleep improved greatly. And in turn, so did my mood. I actually felt like doing things. Fatigue was gone.

After 2 days, I'm waking at night, 4:30 seems to be the magic time, with muscles in my arms and legs cramping, anxiety and my mind racing, both nights. I lie awake doing yogic breathing and praying until finally my mind settles and I go back to sleep. But it's taken well over an hour. This is why I took my vacation from letrozole in the first place. I can't exist on half-assed sleep. The fatigue during the day keeps me from wanting to do anything. And I've cycled through all the AIs and back again to letrozole because it had the fewest SEs. But they all messed with my sleep.

As far as dryness, I've had the best results from vitamin E suppositories. I hated Replens. It burned and itched and left me with a smelly discharge. No, I didn't have an infection. That's just what it does. It also runs out of you. The Vitamin E stays put overnight. And my PCP recommended a probiotic for women called Femdophilus which had worked well for me too. I ran out of it on vacation and forgot to reorder. Was wondering why I was having pain and dryness again!

I am taking turmeric, though it doesn't seem to help much. I hesitate to take the concentrated one recommended here because it's not recommended if you have IBS.

So, I'm afraid to completely stop taking AIs, but the quality of life on them makes it next to impossible for me. My scores are such that there is a miniscule difference in survival rate after 5 and 10 years. I just don't want to go through cancer again.

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I started out with Letrozole manufactured byAccord for about a year until I was able to find a pharmacy that had Teva (which had been recommended by many on this site) as I had pretty bad hot flashes and joint pain on the Accord. These did decrease somewhat when I started Teva. Then 8 months later the pharmacies at Kroger, Publix and CVS informed me they could not longer order letrozole manufactured by Teva, so I was given Breckenridge. I had heard some not-so-good comments about this manufacturer, but this did dramatically improve my joint and muscle pains; however, I am now a total mental wreck. Just ask my husband, I am bitchy, depressed, tired, anxious, and irritated most of the time. This did not happen right away, but after being on for 2 months. My renewal is close, so am going to try and shop for Teva again. I can deal with the pain, but not the mental issues. Hair loss continues to be an issue. I saw my MO last month and he insisted it was not due to the letrozole until I showed him the literature from the pharmacist. Why do they not believe in SEs??

Nancy, I do not know if I mentioned this before, but we are almost BC twins. They didn't see my DCIS until doing the biopsy after the lumpectomy, so I had MX since I had DCIS near the margins. So I didn't have rads. Also, I had endometrial CA diagnoses about a week after my lumpectomy. So I totally hear you on the SE problems. I am on my last AI, and I want it to work, but I can barely use my hands, and I am a PT, so I use my hands all day. I am post meno, due to hysterectomy (was almost there naturally). My MO says we might try Tamoxifen instead of AIs. He feel like Tamoxifen will give some reduced estrogen effect, but not as much as AI. His concern is facilitation of any rouge endometrial CA cells roaming around. Might Tamoxifen work for you? I still am not sure what I want to do. I am 55, so too young to throw in the towel yet! LOL

Hang in there. I know the fatigue/sleeplessness is CRAZY and makes you feel like you are losing your mind and body. You need to be able to live your life!