Dryness all over

Deamo1

I am on Faslodex. I'm having severe dryness from vaginal to nasal. I'm trying my best with the vaginal dryness but the nasal is killing me. I'm reading that hormone changes can cause rhinitis. My nose is stuffed, head congestion, facial pain in the back of eyes, drippy faucet nose, sneezing like no other. I do not have allergies. No fever. My Dr gave me Augmentin for 10 days thinking possible sinus infection and it is not gone away. Does anyone else have this? I feel like my sinuses have dried up so bad. I use a moisturizing spray and steam but nothing is helping. I'm at my witz-end.

beach2beach

I have that while I am on Tamoxifen. Everywhere you can be dry I am. My nose hurts so bad sometimes. I have allergies and take allergy meds too sometimes when it's really bad and that just takes the nasal dryness to a whole new level. I do saline spray to no avail. Sorry I'm not much help, but in the same boat.

ShetlandPony

For years I have had dry tearing eyes and a nose that runs, and I think ongoing cancer treatments are to blame. I just always carry a Kleenex or a fancy old-fashioned handkerchief. Once in a while I get sore, red skin inside my nose, probably from an infection bred in the irritated skin, for which I use a prescription ointment for a few days. It is called Mupirocin, and was prescribed by my ENT.

My ophthalmologist recommended taking fish oil capsules for the dry eyes, too. I think it would help with nose as well. Get a brand like Nordic Naturals that does not have high mercury levels, and as always, clear it with your onc.

Every product I use, head to toe, is clean (no questionable ingredients) and moisturizing. Included in my arsenal are Sensuva hybrid personal moisturizer; and Refresh Optive and Systane Ultra lubriant eye drops, preservative-free (important when you use them constantly).

orangeflower

I don't have nose dryness specifically, but flax oil capsules and a cool mist humidifier have helped me with dryness. I hope you feel better soon.

Deamo1

Thanks so much. I really think I need an internal moisterizer. I tried Replens and it burned like crazy hell.

Deamo1

Thank you!

ThreeTree

Deamo - I too have had horrible sinus problems since taking Letrozole since January 2020. I've been the antibiotic route, etc. and nothing has really helped at all except nasal irrigation. A doctor I saw before I was diagnosed with breast cancer suggested to me that I try a Netti Pot. That all sounded way to complicated and even unsafe to me, so I didn't take his suggestion (I had seasonal sinus trouble before breast cancer, but now it is constant year 'round, due to dryness I'm sure). What I finally happened on is a squeeze bottle that comes with pre-mixed packets of salt and soda. I use it with bottled water and usually do the irrigation 2X a day. It is the only thing that has helped at all and it does help - saline nasal sprays helped before breast cancer, but not after. Everything I'd read about a Netti Pot said you had to boil and cool the water and then mix up your own salt and soda at home and then sterilize the pot, and on and on, etc. It all just sounded like way too much for me. When I saw this squeeze bottle in the store, I decided to give it a try. I read the directions and watched a couple of very short online videos on how to do it, and it is much easier than what I'd heard and read about Netti Pots. I've got it down to a science now and it's really no more time or trouble than brushing my teeth. It has been an absolute godsend for me!

The product I get comes in a red and blue box (I get it at my local Fred Meyer - in the western states, not sure about the others, but a drugstore). It's called Neil Med. They sell it on Amazon also. No need to boil water and mix up your own solution, etc. The box comes with pre-mixed packets and a bottle for about $12. You are supposed to replace the bottle every 3 months. You do need to wash it after each use and dry it on a paper towel, but again, not nearly as involved as the netti pot thing. Bottled water is just fine to use with it, just not tap water. I also get real inexpensive water in bulk and use that. I think the total cost for me winds up being about $7 a month - much cheaper than all those drugs, prescription or over the counter.

I've seen adds for something too now called "Navage" which looks something like a water pik I think, and I haven't tried that or really investigated it. It looks more complicated than the bottle, plus I've been doing just fine with the bottle so will stick with it, but there are other options out there.

Well, this has gotten really long, just hope there is something here that will help you, Deamo. I'm really sorry for your situation and can relate quite a bit. Those sinus things can make a person absolutely miserable!

Deamo1

That is exactly what I have. It doesn't seem to be working for me or the more I do it, the drier it gets. Idk, going to an ENT today to try to figure this out. I've bought a ton of moisturizing creams too. Thank you for your post.

gb2115

I have no advice on the sinuses (one part of me that thankfully isn't dry), but I have been on tamoxifen for over 4 years, and suffer from vaginal dryness, dry eyes, and dry mouth. In case anyone else looks on this thread, I have to recommend Retaine MGD for dry eyes. It fixed the dry patches (for real) on my corneas within a month of frequent use. I now only have to use it maybe once or twice a week.

Deamo1

Great info. Thank you

ThreeTree

Please let us know what your ENT has to say.

breedebra

How did this end for you with the nose?

My ENT says it is mucositis from chemotherapy.

I finished Taxol (16 rounds of chemo total) on 10/5/21.

My nose is drying me BONKERS. I have the same symptoms as your post. When does it end???? I feel like the tissue inside my nose is healing, it bleeds much less but is either dripping or dry and I have the stuffiness, sleep is misery. I am also told there is no infection.

Thanks so much!

Deamo1

It seems the ENT has no idea. They keep on saying to use Flonase and possible allergies. I really think it's the dryness from the hormone inhibitors. It attacks every part of our body. I took a break from it and started feeling better. Unfortunately, I have to start up again. Hate these drugs. Oh and don't expect the Onc to tell you about these side effects. Mine tells me "no such thing" every time I ask.

ThreeTree

I agree that it is likely the estrogen deprivation that is causing sinus problems for some of us. I never see it on "official" side effect lists, but if you look up some menopause symptoms or google, "does low estrogen cause sinus problems" things do come up. The things I came across say that low estrogen can cause a "non allergic sinusitis". I just started taking an antibiotic today, that I have tried to hold off on for almost a month, but I finally gave in. Nasal irrigation has helped reduce some of the congestion and post nasal drip, but not completely and the sinus headaches started getting worse and seem to have expanded to a larger area, so I got a little bit scared. A doctor had given me the antibiotic to keep on hand in case things didn't clear up otherwise and I held off for a long time now, but the post nasal drip just never stopped and the last couple of days the headaches have gotten worse, so finally bit the bullet re the drugs.

I too have had Flonase pushed on me, but it is a steroid and steroids can weaken the immune system. Who wants to do that with cancer and Covid?

The oncologist I see also dismisses most anything I suggest to her is a side effect of these AI drugs and I don't find her helpful in that regard at all. She always tries to attribute any side effects I'm experiencing to some other cause. I think these sinus problems could be a "hidden issue" so to speak re these estrogen deprivation drugs, and I wish we could learn more about it. Sinus problems might not be the most common of side effects, but I'm beginning to think they effect a good number of us and the problem should be acknowledged by the medical community. I've had sinus issues off and on for years, but never anything like I've experienced since taking Letrozole.

Deamo1

Agree with you 100%. Be careful with the antibiotic. They gave me 5 rx's in 5 months. Now I have severe GERD that is burning my throat. One thing causes another with us and I'm sick of it. Good luck to you.

Humblepeace

Hello All,

I have a question for you all. I pray that there is others who have had this experience and it turned out to be a simple issue. A little history which is not in my bio. I had a brain MRI in April 2021 for dizziness. It was clear and appeared to be the Anastrozole. Well moving forward last month October 15ish or so I started having head pain. It was on one side, left temple for about a day. It was all day just intermittently. Then it switched to the other side as well as behind my eyes and nose cavity I could also feel pain/uncomfortable feeling in my teeth and jaw. I thought sinuses or something related, but my nose was as clear as a bell. A bit runny for only minutes when awakening or eating spicy food lol 😂. Well this head pain has persisted up until today. I mentioned at my follow up with MO and he said I was stressed about having had a prophylactic mastectomy and was awaiting the pathology.

Pathology was a good report. Amen

Pain relievers only seem to help minimally and by evening/night it's a bit worse.

I was on Tamoxifen in 2017 for 6 months after completing active treatment and then switched to AI after menopause. I have had many SE's, the usual and some not so usual since being on AI. Joint pain, hair loss, dry skin, tinnitus, back and hip pain, and trigger finger to name a few. If anyone has any ideas or similar situation I would really like to hear.

Sincerely,

Humblepeace

ThreeTree

Humblepeace - I take letrozole (almost 2 years now) and I sometimes get light headed and since last spring, I've been getting a lot of head pain that can cause dizziness and I almost lost my balance a couple of times. The pain I get is what I think is sinus. It is primarily just above my nose and right between my eyebrows. It can travel to behind my eyes also. To me that is classic sinus pain. I don't get the pain on the sides of my temples, as you described. While I can usually breathe through my nose when I have this pain, I do get crazy levels of post nasal drip that come with the headache, so again, I think in my case at least, it is primarily a sinus issue, and I think the letrozole has aggravated and made what used to be an occasional and minor problem a constant and impossible one. I've got all the joint pain and dryness too.

I tried nasal irrigation for the sinus trouble and it seemed to work for awhile, then I seemed to develop a sinus infection in spite of doing the nasal irrigation. I dreaded the idea of an antibiotic but finally went to see a doctor for it. The antibiotic helped, but within days of stopping, it all came back, in spite of continuing with the nasal irrigation. This happened twice last spring and over the summer. More recently, I decided to try an old product I used to use called Xlear Nasal Spray and that actually seemed to help a lot. No more head pain, no more post nasal drip. After 2-3 weeks of using it every day however, I started to notice that I was feeling "weird" and that my routine letrozole side effects like joint aches, seemed to be getting worse. (This is a product that states it can be used as often as necessary.) I figured it was either the Xylitol or the grapefruit seed extract that are in the product that was causing the weird feelings and increased AI side effects. I looked around on the internet and learned that grapefruit is not a good thing to have with letrozole, and I know that extracts can be even more concentrated than the actual fruit, so I suspect that is what started causing the problems. Apparently, grapefruit products can interfere with the metabolization of many drugs; ones that are processed through the liver. If you don't process the drug fast enough, you will get more side effects, which is what I think was happening to me.

I then tried using just a plain saline nasal spray and/or just doing the nasal irrigation again, because I figured I'd better stop using the Xclear (that used to work wonders for me years ago, just for those off and on problems). Just today, the head pain is starting to return along with the post nasal drip. I did read that low estrogen can cause a "non-allergic sinusitis" and I think that is what I have. I think others might experience this problem also, but it doesn't show up on side effect lists as being a problem, and I could almost guarantee that the oncologist I see would dismiss it as non AI related. I just don't know what to do at this point. I might try using the Xlear just once a day instead of 4 times, along with the plains saline, and see if that is enough to do the job. The Xclear really got rid of the head symptoms, but it caused other problems in the process, so I am back to square one basically.

Humblepeace

ThreeTree,

Thank you for so much info. I did see the physician assistant. Her recommendation was saline irrigation, a humidifier, and Flonase. The head pain tends to come and go the face pain behind the eyes and nose has gotten somewhat better. I hate to complain but I must admit that the side effects from the medication that we rake can have so many unsettling feelings which can cause too much anxiety. I have been on Anastrozole for 4 years (or another AI to ease side effects) and I honestly can’t remember too much time going by that I wasn’t getting a test and waiting for results due to a pain of some sort.

Once again thank you so much for the information and the responses.

ThreeTree

Humblepeace - Wow! Just stumbled across your message here. I'd pretty much forgotten all about this thread, but was looking at something else and saw this. Your quite welcome for all the info - probably more than you ever wanted. Just for an update: The Xlear nasal spray started to cause me problems - it never used to. I think it is the grapefruit seed extract that they use as a preservative. Apparently grapefruit can interfere with all kinds of drugs; anything that is metabolized via the liver, e.g. letrozole. I started feeling like my AI side effects were getting a lot worse, so stopped the Xlear and did indeed feel better. It worked for about a week then it all began to feel like "too much". I'm doing the nasal irrigation still twice a day, but now I'm also using Simply Saline spray (no xylitol or grapefruit seed extract, just more salt and soda) several times a day in addition to the irrigation. It's doing the best so far.

I've been reluctant to do Flonase, because I had problems with it years ago and I think it is best for allergies, and I don't think this problem is an allergy one, but a low estrogen thing. Also, Flonase is a steroid and bad for your bones. That's the last thing I need with this AI. I have a package here at home "on reserve" though, as a very last resort thing to try. I understand that steroids also lower one's immunity - not something I want to experience during Covid times.

Good luck with whatever regimen you wind up using. It's a real trial and error, hit and miss thing!

kksmom3

Fingers crossed, I have not experienced the dry eyes and I also have glaucoma in one eye and I take drying eye drops for that. I use Systane ointment in my eyes at night for a few days and that helps.

My big issue is the vaginal dryness! The only thing that helps me is a product I get off of Amazon called Gynetrof. I also was prescribed some estriol which is a vaginal insert. My PCP, MO and gynecologist who is a breast cancer survivor herself, OK'd it. Very little is absorbed systemically. It just goes where it needs to, to build those tissues back up. There should be threads you can find on it, if you do a search. It was/is miserable!!!!! I can use Replens but it still burns a little, a product called Good Clean Love burned the worst. I also tried via E but it did nothing. The days I don't use the estrogen I use the gynetrof. Such a pain, but I was hurting so bad, plus several UTI's, well, I'll do anything to feel better.

Hope this helps!

kksmom3

Fingers crossed, I have not experienced the dry eyes and I also have glaucoma in one eye and I take drying eye drops for that. I use Systane ointment in my eyes at night for a few days and that helps.

My big issue is the vaginal dryness! The only thing that helps me is a product I get off of Amazon called Gynetrof. I also was prescribed some estriol which is a vaginal insert. My PCP, MO and gynecologist who is a breast cancer survivor herself, OK'd it. Very little is absorbed systemically. It just goes where it needs to, to build those tissues back up. There should be threads you can find on it, if you do a search. It was/is miserable!!!!! I can use Replens but it still burns a little, a product called Good Clean Love burned the worst. I also tried via E but it did nothing. The days I don't use the estrogen I use the gynetrof. Such a pain, but I was hurting so bad, plus several UTI's, well, I'll do anything to feel better.

Hope this helps!

ThreeTree

Humblepeace - I forgot the main thing I wanted to mention in my previous post, and that is the possibility of migraine being the cause of these sinus and behind the eye pains, etc. Migraine can also cause some dizziness, lightheadedness (as can the AI). I've never had a migraine in my life, but I am beginning to wonder if that figures in here somewhere. In my reading on low estrogen side effects, I also read that low estrogen can cause migraines and that migraines can cause sinus problems. There seems to be some sort of connection between low estrogen, sinus congestion and pain, and migraine. I do remember when I was younger some women I knew said they would get migraines right before their periods. Well, apparently that is a time of great hormone fluctuation. My reading suggested that this can occur with menopause also, and probably any low estrogen situation. A friend of mine got me thinking about this, because she said that what I was describing to her sounded a lot like migraines that she used to get. I had always heard previously that migraines were usually on one side of the head only, but apparently that is not true. It can be and it is most common, but the pain can be all over your head; sometimes right above the nose and between the eyes, and can come and go.

Just some more food for thought as we all try to figure out just what is causing our problems and what might help.