Bottle o Tamoxifen
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rachelcarter, . . .or it could be that you are once again entering yet a new portion of this journey with all of its unknowns! Thinking of you as you move through these next transitions--keep us updated, please.
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Nas-please Call your doc and get checked out. When I had blood clots in the lungs it was a little uncomfortable to take a deep breath, weird pain middle of my back and eventually shoulder involvement. All resolved once I got treatment. Better safe than sorry.
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Lila what was the treatment??? Are you still on tamoxifen????
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A Lovenox shot every 12 hours for 1st 24 hours then an oral blood thinner medication after that for 6 months. The doc and I discussed the different ones and I chose Xarelto because it’s just once a day and I’m horrible about taking meds multiple times a day. No longer on tamoxifen...the blood clots were the last straw and you’re not supposed to restart it if you get clots on it. Took nothing for 6 months til I could have the oophorectomy then started letrozole 8 weeks later. The SEs are the same for me but much milder than when I was on tamoxifen.
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Nas- please get checked! Better to rule out a blood clot.
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Hi Tamoxifen Sisters,
Have any of you had days were your T side effects real acted up at work and it took everything you had within you just to get through the day? Today was one of those days for me I got hot flashes, ovarian pain and just plain achy body cramp pain. Have any of you used the BC or tamoxifen card at your job to help reduce the amount of stress you have during your daily working hours?
My preschool classroom is going to be getting a lot more challenging behavior children this school year, and I am not sure if I will be able to handle them with all my SE. I don't want turn children away, but I also want to look out for my own mental and overall well being health wise. Sometimes I think the stress that I had at work before BC might have played a roll me getting my BC. I have been thinking about using my BC and Tamoxifen card to help reduce my stress level this school year or maybe get some extra help in the classroom. But I am not sure if I should or not.
Any advice or experiences you could share would be greatly appreciated.
Thank you for listening.
Hugs
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@RachelCarter35 - These are true concerns that you are having. Each part of this journey is different with it own concerns or fears. You are going to rise to the challenges and take lots of deep breaths ( I still do 1 year and 4 months after diagnosis). Tamoxifen is also quite another story, it can be uneventful for some women while others want to throw it out every day. You will have to experience it for yourself. But, you will find lots of support here and be able to share your experiences.
God bless you,
Humblepeace
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I went to my MO today, he said all is good with me and what I am suffering is stress🙈 he told me to wait few more days and if the symptoms gets worse better to visit a GD , to be honest today I have no short of breath and my back pain is a lot better, tganks everyone for your help❤️YOu are the best
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Anyone having any issues in the genital area. For example, itchiness, raw feeling, thin cuts. Thankfully I see the doctor on Monday, but any tips on how to deal would be welcomed. Pretty sure it's not a yeast infection as the over the counter stuff did nothing and it's constantly showing up. I read it could be a SE to menopause - lack of estrogen - know how menopausal women treat it? With estrogen cream, well that's off the table for me. This is a really horrible SE!
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I do estrace. My doctor was ok with it. Big help.
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Thank you Trvler!!!! 💞
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Nas, so glad you saw a doctor. Stress isn't great but it is better than blood clots! Glad you are feeling a bit better.
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Vampeyes-i recently started experiencing the same. It is from lack of estrogen to the genital tissues. Estrogen keeps them plump, lubricated and healthy. Without the estrogen they atrophy, dry out, and eventually split (those little cuts). Coconut oil helped soothe it almost immediately in the short term but I finally had to try the Intrarosa samples my GYN had given me back in January just in case these symptoms appeared Intrarosa is DHEA your estrogen starved vaginal and surrounding tissues will convert it locally to estrogen so the tissues and only the tissues get what they need. It's a local exposure not a systemic one (estrogen levels cannot be detected in bloodstream by standard testing after using it), and no black box warnings. So far so good with it.
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Thanks Lula, I will mention this on Monday. Today is a good day so far! Fingers crossed it stays on this path! Did yours come and go as well?
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yes at first. Then it was days in a row. That’s when I knew I had to do something and started the coconut oil. Then DH and I were intimate and afterward he mentioned just how much lube we were needing and that it still wasn’t 100% comfortable even with all that lube (for me, not him). That’s when I broke out the intrarosa. Going to try being intimate again this weekend and see what happens. Hoping intrarosa did it’s thing.
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In regards to painful vaginal area have you ladies ever talked to someone who sells "Pure Romance "? .they are incredible products. I use a lot of them. They have creams, gels, lubricants. My MO said any of them are fine. Also I use coconut oil daily and never wash with a harsh soap down there. Use a feminine wash or try one of from Pure Romance. I don't wear undies but my MO suggested washing underwear in a detergent like Dreft or fragrance free. No fabric softener.
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Soooo the doctor had nothing that can help with the pain, itchiness and dryness. He is sending me to a gynecologist in hopes he careen help me. I am not holding my breath. I have found that eliminating perfuming body wash has helped immensely with the itching. I just can't see ten years on Tamoxifen feeling this way.
Lula what is intrraosa?
Are you guys feeling the pain a lot of the time or just during intercourse? I feel it a lot of the time. Will the products you recommend help for all the time? Do I use coconut oil daily? God this sucks!
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Vampeyes, I think your doctor crapped out. It's not that he has nothing. He was not willing to try anything. Bound and gagged by 'the book' that says hormone positive breast cancers can't have any hormones or our heads will blow off.
I was doing some Googling and read over and over 'you must consult your doctor' or 'this must be done under the guidance of your oncologist' and I began to get annoyed. It's like some subtle form of punishment, to no longer have control and authority over our own bodies. I have to ask permission to abate and heal the MISERY that sometimes exists between my legs? The bladder twinge that never quite goes away and makes me dread sex because I know, just know, that 3 days later I'll piss razor blades. So I'm going to trot in to the docs office with my hat in hand and ask him to fix my vajayjay and if he says no I shall shuffle off in silence, head bowed, accepting the fate of my vagina becoming one of the California Raisins (maple smoked jerky for the Canadian readers). I DON'T FARGIN THINK SO!
I have a tube of Premarin. That stuff is The Bomb. More than once it has brought my hoohoo back from the brink of death. Breathed life, elasticity and relief into it, with ONE APPLICATION about every 6 months. Or whenever things get so bad that I can't function. And by the time we are so miserable that we waddle in to our doctor's office and ask for vaginal help, and he shrugs and offers nothing, he has shit the bed as a doctor!I do not yet think I need nor do I want to deal with my vagina daily. For me, once in a while, a shot or Premarin has done the job and I am ever so grateful that it has. But I did not ASK my oncologist if it was alright. I TOLD him I was doing it. He does not live inside my body. He does not have a vagina and most certainly not an old, withered, dusty one. So he has no frikkin clue and is in no position to tell me what I can and cannot do. Maybe what I should and should not do. Which is his medical requirement. Guidance. But he ain't my daddy and he don't get to tell me no. Sometimes I think we need to make our doctors understand that we are not seeking their permission, just their opinion, which we will take, or not, as we see fit. Now hand over the hoohoo hormones!
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Oh Runor - I love your writing style. Part of the issue with my doctor is that well he retired July 1st. Since then we were told a new doctor would take over in the fall and then we were told nope not happening with the shortage of Canadian doctors. Another doctor that has taken over the practice temporarily has agreed to take my retired doctor's practice on and has added two nurse practitioners. I am ok with that, unfortunately the last two times I was there I seen two different doctors who are just helping out till the end of the month, which would be ok, but they don't have a file in front of them, it's all on the computer and I have to re-tell my cancer story every single time. Frustrating. My old doctor had a file on me - why can't they just look at it? Why don't they add notes to the computer each time I visit so I don't have to go over the same stuff?
I will say this the itchiness has subsided with the change in soap - thank goodness for that! Still feels weird and like a faucet with a drip! I can't believe this is my life for the next 10 years, or longer, maybe this will be the way it is till death?
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re premarin- I had endometrial cancer along with BC , and constant UTIs(every 3 to 5 weeks)
My urologist and my gyno oncologist said I would be ok using a tiny bit of premarin daily
I ended up not doing it, but thought you all would like my drs perspective
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vampeyes-Intrarosa is a steroid (DHEA) that works in the tissues of the vagina. The local tissues will convert it to estrogen to repair the tissue. The key to why it's considered ok by many docs who have been educated on it is because it's localized and not systemic. Evidence of this exists in bloodwork (no detectable increase in estrogen levels with standard lab equipment), no boxed warning about blood clots (that one is huge indicator that its action is local only), the use in BC patients section is much shorter with less specifics vs estrogen containing creams, pills, rings). Systemic estrogen is what we worry about. I would go see one of the nurse practitioners especially if they're female. I'm going to say something unpopular, so hold on. Nurse practitioners a lot of times are better educated and far more up to date than the drs are. Lord knows they are more sympathetic to our healthcare plights. If all else fails, you may have online drs in Canada who may write it for you. And yes the coconut oil is every day at least once a day. It doesn't take much for daily use. It does act as a good lube. Who knew?!? Anyway, here’s a link with a great overview explanation of Intrarosa and how/where it works:
Shelabela- I looked at their website. The essential oils looked promising til I realized you don't use them down there. You apply to beck, tummy, arms. It's more about scent than anything else. Still intriguing but for different reasons and that's why we need healthy vaginal tissue. Other than that, the silicone lube was the only other thing that looked promising but it won't help the tissue to heal - only help protect it during sex and make sex more comfortable. Water based lube dies kit last long enough when your vajayjay is in the state were describing. It would suck that water lube up in a skinny minute and be right back where we started. Thank you for suggesting it though. I'll be checking out those essential oils...
Runor- You know what? I think we all should take a page out of your book. Do our research before hand and tell the doc everything we've already tried (take his standard recommendations off the table) and then TELL him this is what I want and need to try because the others aren't working and this is why I feel comfortable taking it. And unless he has solid concrete evidence against its use to help with these god-awful side effects write the prescription! I think a lot of times we go in and throw something out and they just say no and we walk away because they “know more." The problem is he doesn't understand just how bad it is, especially when we come in looking and acting just fine vs ratty hair, shredded crotch in our jeans from scratching, clumps of hair missing from when we pulled it out literally trying to deal with the burning, stinging, itching pain, accompanied by our DH/SO who is advocating for us... no, BEGGING the dr to do something anything to help as he stands there with deep fingernail size gouges down his face, arms, back and chest from where we clawed him trying to handle the pain sex now brings. Bottom line though, we know our body. He knows bodies but he doesn't know my body and what I'm capable of handling or not. If we educate ourselves and demonstrate that and not just accept no for an answer we can get somewhere. Lord knows I've had to do it with a different debilitating skin condition i had. And if he still says no? Ask him, “What would you be willing to risk/do to not feel like the skin of your penis (that is now shriveled up to 1/2 it's size) is being ripped off in little strips every time you try to have sex with your DW/SO, to avoid the excruciating stinging 24/7 like you're constantly rolling your penis and testicles in a patch of stinging nettles regardless of a sexual encounter attempt, combined with an unstoppable itch that just makes the stinging even worse when you scratch it, oh, and it feels like you're pissing razor blades every. time. you. pee. (Oh and remember to stay hydrated!)What would you do to get relief?"
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Hi Lula, Thanks for the info! I honestly feel the same way about nurse practitioners, I wish I had gotten to see one of them instead of the doctor who will only be here till the end of the week. At least I got a referral out of it, just annoying to have to repeat myself every time I go to the doctors, maybe I will write it up in point form and carry it with me. haha
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2FUN, I have only used a .5 ml blob once in the last year of tamox. Before when I was having problems I might have used .5 ml two days in a row. For me (thankfully) Premarin has been the magic bullet. When I told my onc I was using it about once every 6 months he waved his hand and said, pffft, no worries. Even if he would have flapped his arms and squawked like a chicken I wouldn't have handed over my tube or Premarin. No way man! My lady bits need their fix!
Lula, I read, I stood, I cheered and applauded. Yes, yes and again yes! I absolutely agree that nurse practitioners are in the know. Doctors (not all but a good many) get a rather self serving smugness about their position in the world. The white coat provides them some authority that we all bow to, whether it is earned or not. In most cases it is. In others, not so much. But I think nurse practitioners are a brilliant idea and no, they are not doctors, but they sure know when you would need a doctor or when they can help you. I feel absolutely confident in the hands of a nurse practitioner. I think for many of them there is less ego rolled up in their job.
Vampeyes, you need to get a t-shirt printed. Wear it under a raincoat. When the doc asks you what your problem is, whip your coat open so he can read : VAGINA BUSTED, FIX IT PLEASE!! Pretty much sums it up. But I do condense my problem to as few words as possible and lay it out because I know doctors are busy and I try not to take too much time. Unless things are dire, then, for all the times I didn't waste time, I feel I am justified in taking the time I need. Karma.
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Hello ladies. Today is my one month Tamoxiversary! So far I find I've been a bit cranky, and I do get hot - but I'm not sure if it's my natural overheating, or the meds.
I haven't been drinking as much water as I'd like because I'm still in the full body girdle after my umx/rec, and it's a mission to pee.
Hope the path stays this easy.
Good luck you all!
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Runor- I just read part of your post to my hubby, from Googling through California Raisins. I love it and he finally gets it that these issues are real and affect many women. Thank you.
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Has anyone tried vitamin D3 for joint pain?
thanks, Buttercup
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Princess Buttercup -- I use Move Free for joint pain. It works better than anything else I've found. I can tell a difference when I forgot to take it with me during a 3 day vacation!
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Buttercup, I was taking vitamin D for bone health (per PCP's directions) before starting Tamoxifen so can't say whether or not it makes a difference with joint pain. I do take Loratadine daily since starting Tamoxifen and have also found that exercise (primarily walking) and avoiding gluten do help. I am gluten sensitive so that may not be useful if you tolerate gluten well. However, the Arthritis Foundation does suggest trying avoiding/eliminating gluten to see if that helps with joint pain and stiffness. There are many gluten free products now available in the grocery store (look especially in the freezer section) so eating gluten free is much easier than it used to be.
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I take D3 but not for joint pain. I don't have a lot of joint pain. I just know that in my area (Chicago), people tend to have low Vitamin D levels. Mine tested low.
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Hi Robin, what is in Move Free?
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