FEMARA
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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.
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nancy, my symptoms seemed much better after 4 to 5 weeks off the meds. See how you feel in a week or so when u r back in the yoga routine
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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.
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lisap62, I have been having some lessening of joint pain taking tumeric. I had some help from glucosamine and coq enzyme 10
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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😋
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I've continued taking the generic claritin since Taxol. I think it and exercise have made a difference in my joint pain. I also was taking CG and Calcium with Vitamin D and have continued to do that. I'm at the age that many of my friends have had a hip or knee replaced and I'm still moving with my original set so I try not to complain. I did have a cortisone shot in my knee for the first time recently - pain was manageable but we are going on a trip which will required a lot of walking and I didn't want it to slow me down.
I'm certain having a lot of drug allergies adds to the problem of finding what's works. I've ordered turmeric since so many of you speak highly of it but it hasn't arrived yet (probably got caught in the prime problems at Amazon.)
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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)
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Have you tried topical estrogen?
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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
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Intrarosa May help. Unlike estring it’s easy to put in. It’s effects stay local on the tissues. Also, what about Mona Lisa touch therapy? Coconut oil is good-if you’re not using it everyday, I’d try it and see if daily application helps. If it’s painful, Vagisil cream can help too-there’s nothing in it to treat a yeast or other vaginal infection-it’s just skin moisturizers and benzocaine. Hope you get relief soon!
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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!
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Thank you both for your replies. LovefromPhilly, what is the FABNO ND? I'm not familiar with that term. I see you are also Stage IV so that gives me hope, I might be able to also use it if my MO agrees. Is it very expensive to have it compounded? CVS is also my pharmacy but there is a specialty pharmacy that I believe is in my network also. I'm on part D Medicare so not everything is covered much. The Estring I tried to use cost me a $200.00 copay and right now, I haven't decided if I'm going to use it or not. I had such trouble with it when I tried to put it in and never got it in right.
Thanks for your information.
Faith (in the future).
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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.
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Faith, FABNO stands for Fellow of the American Board of Naturopathic Oncology. ND is the abbreviation for Doctor of Naturopathic Medicine. I'd love to find a FABNO ND in my provider network, but so far no luck.
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My onc recommends daily coconut oil
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Hershey Kiss, thanks for telling me what that stands for. I didn't even know such a speciality existed but it sounds like exactly what I need. I'm going to have to do some research on Mr. Google but I doubt any of the fees would be covered by Medicare. Even with my supplemental insurance if it's not approved by Medicare it's all out of pocket. Mom-mom, I have been using coconut oil but it's been very slow to help heal things.
Thanks again,
Faith
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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!
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Hi love fromPhilly,
I'm in the Chicagoland area so they may be some ND's here. I just haven't done my research yet. I need to get on it but honestly I'm just tired of always thinking about this stupid disease. I'm also tired of not feeling good so I need to do something. Thanks for your help.
Faith
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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.
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I have questions along this line since I literally just stopped letrozole 4 days ago (after 4.3 years)w/ my oncologist’s approval b/c of side effects. Actually, I didn’t realize that some of the side effects could be from letrozole since I’m on other meds, and have (treated) hypothyroidism. I’m hoping for a huge improvement in mood, anxiety, memory, cognitive problems etc. How long before things (hopefully) improve? Weeks, years?
The problem is that hopefully life goes on—the last 15 years have been hell on wheels for me for a variety of non-cancer related issues. That makes it hard to tell what is coming from what. The cancer was merely icing on the cake to give you an idea of the severity of the issues.
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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.
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I didn't know there are different schools of acupuncture either until I took the course. The main idea I got was that the Chinese are enthusiastic needlers and use a lot of moxa.
Kiiko was quite a character. She trained in Japan w/ a blind master for years and was a stickler for accuracy and outcome. She was/is very nice, too.
As a woman doctor I lost my fixed enchantment w/ Western medicine long ago. But they do use the scientific method which is quite valid. That's not so clear w/ alternative treatments. Basically, I think it is very hard to separate the wheat from the chaff in any method. Which is scary when facing cancer. Who ya gonna trust? Also, sociopaths are very good at sales.
BTW: Acupuncture used to be the exclusive domain of the blind in Asia until recently. Robbed of that major sense, the blind were thought to be able to develop more sensitivity than the sighted. And that is probably true. Kiiko's teacher, a blind Master of renown could pretty much tell what the person's problem was by taking their hand.
Also, there is the total body representation, but that is repeated on the scalp and in the ear. I have a book on ear acupuncture which is fascinating. You can treat almost anything w/ accurate ear acupuncture.
Life is strange. . .
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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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Nancy618, I hear you about the lack of sleep. I've found that a small melatonin dose helps me. I use 1.5 mg and I can use another one if I wake in the night as long as there are three hours before I have to get up. They are chewable so I don't have to bother with getting water to take a pill. My doctor recommended melatonin but check with yours first. My sleep still isn't perfect, but better. Occasionally my pain is really bad so I take tylenol pm instead of melatonin at bedtime. The sleep ingredient is like benadryl, which is fine for me, but some people don't like it at all.
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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??
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Nancy618. I am going to try the vit-e as you mentioned. I followed an earlier feed where you mentioned (amongst other things) odor. I thought that adding replens was a good thing until I had the exact same problems that you had. Who would have thought that adding moisture would have so many headaches? Geez this dx keeps giving and giving. Yay us.
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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!
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Nancy- which concentrated turmeric are you talking about? That’s bad for IBS? I could not find anything on it. I have IBS and I take Solgar brand curcumin no problem-1 a day. While my IBS is better than it was it’s still not perfect. But I’ll take better with far fewer episodes than no change at all.
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I don't have IBS, but I have not had normal GI function since I have been taking AIs ...Tumeric just makes my GI processing more interesting!
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Muddling...Melatonin does nothing for me. I even tried a combination herbal thing my MO ok'd called Luna. Nothing. I take a very low dose of hydroxyzine normally and that works when I'm NOT taking letrozole. I always take 2 ibuprofen at bedtime for the aches and pains. I've tried benadryl and it doesn't work either. Hydroxyzine is also an anti-itch med, so it's similar.
I have only been able to get Accord too. When I was taking Arimidex, I got Teva and that wasn't too bad, but then they switched to Accord too and the leg pain was horrible. The reason I changed AIs yet again.
Yes, the mental/mood thing is real for me too. So easily ticked off, depressed, sluggish, and yet anxiety in the middle of the night so I can't sleep once I wake up.
Hair loss!!! I forgot about that one. Yes, I clean the drain every day and I have a clump. When off of it, it gradually lessened. So, I believe it is the letrozole.
And after day 3 back on it, the hot flashes are often and intense. Ugh. During the 4 week hiatus, I had maybe one a day and they weren't bad.
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