Bottle o Tamoxifen
Comments
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BLuewillows, I think even those who do take drugs (hormonals) worry every day about the cancer coming back. A vein running through these posts is the struggle, private or public, tearful of chin forward, to get the devil FEAR out of our heads and hearts and to allow us to live like we did BEFORE the day we heard those heart stopping words, you have cancer.
Pardon me, but can you speak more about genital skin rage? I used to get a bar of soap and lather up and now, don't even think about it! I feel all the time irritated and icky and uncomfortable and just miserable. I have had several suggestions of things to try and I know that vaginal and bladder changes are part of the package. But the genital skin rage, the feeling of being raw and irritated, this is new and I'm not loving it. Is that what it was for you? Just a raw, almost itchy, sort of burning, all the time feeling?
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Yes, I too have experience more frequent and UTI and overall irritated genital area....my OBGYN says to use NOTHING on the area...only water to wash the area. No soaps, no creams as these can and often irritate. For lubricant, she suggests organic almond oil. For me, these solutions have worked for me.
Good luck!
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runor Thanks for your comments regarding victim blaming etc. I have chosen not to take Tamoxifen and have felt very unwelcome on this website ever since making that decision. I used to find bc.org very helpful but comments like Michelle's have pretty much driven me away.
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Hi everyone...lets all try to remember that treatment options are a very personal choice. I'm happy for anyone who does well on Tamoxifen. However perspectives from those who have bad side effects vs those who do not are obviously completely different. We all need to respect and support all treatment decisions made without judgement.
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CD: I am curious if you mind sharing who your oncologist is? My oncologist is the same way and I live in Illinois as well.
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Tryler, I'm in southern IL and receive my treatment in MO through Siteman. Are you up north (aka Chicago, the only part of IL anyone knows about or considers IL 🙃) or in my neck of the woods?
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Hi,
jpBCfree, I noticed that you live in Los Angeles. I live in Pasadena. I follow an vegan and following a WFPB diet as well. Have you been able to find any doctors in LA that are supportive of a WFPB lifestyle?
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SJI, you are welcome.
Victim blaming is ubiquitous. I think often we do it without even realizing because it is mixed into us the minute we pop out in this culture.Now, some decisions we make DO carry negative consequences, like drinking and driving. Can the person who drinks and drives REALLY complain when they get in an accident? No. That person made a choice when they KNEW the negative outcomes.
But tamoxifen is not so clear cut. The outcomes are not known. Take it an do well. Take it and feel like hell. Take it and get no recurrence. Take it and get a recurrence. Take it and get no breast cancer but uterine cancer instead. Or a blood clot. Or a beard like a circus lady. Tamoxifen is hopefully a good thing, overall, but it is offered with a shrug and grimace and fingers crossed. Because, no guarantees.
It think it is important for women who had no problems to post that here. We NEED to hear a balanced view of outcomes because I believe it does offer hope. Women can give tamox a try hoping for the best but knowing that others have had hellish times and if it turns out to be hellish for them, there should be no guilt or failure attached to ditching it. And no stories of gee, if only you had toughed it out you wouldn't have cancer now or wouldn't be second guessing yourself later, beating yourself with guilt and questions. We all do the best we can with this stanky disease and we all have to draw our own line in the sand of what we are willing to tolerate. How far we are willing to go.
SJI, you ARE welcome on this site and indeed your voice is one that needs to be added to the mix. If you do not feel welcome SCREAM about it, because other sisters, feeling the same, can step out of the shadows and begin to claim their place on these pages. Because if there isn't a place for ALL of us, this is no place for any of us. Sharing must be open, honest, personal and NOT laced with threat and judgement.
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i agree, we are all different people who react to different things. We also come here for support. We should be supporting each other. Not fighting. I am on that has few side effects from Tamoxifen. I consider myself lucky, but i would never be rude to others who have nasty SE. I get enough of that from others.
Every one is entitled to their opinion. And welcome to share it. But i would hope we can all be respectful.
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runor.....rage was autoorrect typo...but rembering now I had a horrible itchiness on tamoxifen. It should have said skin tags....lol
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Bluewillows, too bad, I think rage is an appropriate word to describe the state of my vagina these days. I blame all my bad driving on vagina rage! Ha ha!
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Ladies, I am one of the blessed ones who has been taking tamoxifen for several years without any major problems. The hot flashes at the beginning seem to have gone away and having had 2 hip replacements my joint pain is much better. The hip replacements had nothing to do with tamoxifen, they were damaged before breast cancer. I started treatment in July of 2014 and so far no reoccurance, thank God. BTW I am 74 yrs old. Love, Jean
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Has anyone who quit Tamo (primarily due to bone pain) and switched to a different hormone therapy have an easier time and if so, which one?
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hello,
First time posting here.
I quit tamoxifen couple of times because of unbearable bone pain, night sweats, leg cramping, insomnia.... I have been back on it for about a year now but at a lower dose.
I'm at 10mg and definitely tolerating it better. But I'm also taking venlaflaxine/effexo - (anti depressant) which supposedly helps with some menopausal symptoms. My onc has been pushing to increase the dose back to 20mg and asked me to talk to my dr about increasing the dose of venlaflaxine to counter some of the side effects...
I'm very reluctant about this because of my medical history - I'm seeing her again in a few weeks so we'll see.
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Pleione, if you have to go up to 20mgs, see if you can take 10mgs 2x per day, even ask if you can increase it to 15mgs per day for one month and then up it. You might also be able to add in a small booster of elavil to supplement the effexor. Even 5mgs of elavil could be beneficial at night. Elavil/amitryptline has been used for pain relief, but too high of a dose can cause weight issues. If you are seeing a psychiatrist, they would be the one to figure out the combination of medications that will work for your situation. I have had some bone pain, and I do alot of walking to keep it at bay. Another thing that has helped with bone/musculature pain has been epson salts in the tub, and a dry bar of dove on my shin bone if it starts hurting. I know it is an old wives tale, but it does work. The more I move and walk, the less the pain is noticeable. If things get tough for me, I see an acupuncturist who is wonderful.
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Hi Ladies! I just wanted to share this because I found it amusing and we can all use a smile sometimes. So I have a 20 month old daughter who is learning all these new phrases seemingly daily. Well, after Momma stopped playing dress up with her and the winter hats yesterday, her newest is "Momma's hot flashing!" Because that's what I gave her for an explanation. I can only imagine the amount of times that is going to get repeated, possibly to perfect strangers!
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those of you who have been on tamoxifin for a time and got SE , when do you see SE? is it immediate withing a day or two or does it cumulate over a few months?
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Mine came in a few weeks, not the same day. And then in another few weeks some of them eased off.
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CDV: Chicago suburbs.
I didn't get mine right away. I am hoping drinking more water helps with cramps.
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I got the muscle/joint pain within about 2-3 months. The nausea and dizziness didn't start for almost a year and then took another year to figure out how to get rid of it!
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Hi Shinee84
Yes, I live in LA too! Sadly I have not found a doctor who knows as much about Whole Foods Plant Based diet as I do...I get support from Dr. Greger's NutritionFacts.org and I'm planning on visiting the PCRM (Physician Committee for Responsible Medicine) in WDC this summer. My doctors are fine (Internist with Cedars, Oncologist with UCLA, OBGYN with Good Samaritan) but they don't talk to each other or really seem to explore beyond our 40 minute appointment. I'm in the process to trying to find a integrated doctor to help me connect the dots with all the blood tests, etc. Really would love love find a doctor who is fellow BC survivor!
cheers.
JP
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I had bone pain the entire time I was having the Herceptin infusions. I'm one month past my last infusion. I am also on Tamoxifen. I had zero bone pain pain before this. Mine is not in my joints , just the bones.
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I just started taking Tamoxifen on Tuesday. Dx at 30 and now almost 32, pre-menopausal, and SOOO not looking forward to any more hot flashes. Had bad ones from Lipton during chemo. Anyone else around my age have any feedback regarding se's with a similar situation as mine?
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Blownaway~ I am right there with you. Hard to determine whether it's the CIPN or Tamoxifen. I think it's both. Let me know what you figure out, ok?
Runor et al~ Let's support each other, and also remember that taking Tamoxifen does not mean we will not have reoccurrence. No magic pill, no illusions. I would never place all my faith in the pharma industry.
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Look into a functional MD. I'm set to meet with one next week. Google to find out what it's about. I think you'll find that may be what you're looking for with regard to bloodwork, etc.
Mine is female and very thorough. They usually do a lot of bloodwork, etc., etc. Vit C infusions. All kinds of options.
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I should say that I also have an integrative MD (two time BC survivor) that I see -- but she's very easygoing and lovely but does not run much bloodwork, etc. Good for supplement and nutrition advice.
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Hi ladies! I have been taking the Tamoxifen for about 6 weeks, and so far my only side effect that I notice are some mild hot flashes once in a while. I expected to be miserable, but honestly it's going very well (so far, but know things can change as time goes on)!
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Anyone else on tamoxifen after having had a hysterectomy? I had my hyst about 3 months ago and am still exhausted. My iron is back to normal, but can't shake this fatigue and my stamina is bad. I finished up chemo about 1 full year ago, so I suppose it could be lingering effects from that. Just want to have energy again...
My 2 cents on tamoxifen. For me, the hot flashes are the worst of it. Especially because they interrupt my sleep. But they are not severe (my lower back gets a little sweaty and I feel as though I'm inside a car that's been sitting in the sun on a hot afternoon.) They last about 4-5 minutes usually. I occasionally get a little crabby, but not sure if that is due to the tamoxifen, but I still feel like the same person. Also, since my hysterectomy, my hot flashes are more intense and more frequent than when I was on just tamoxifen. Overall, I would say my experience is pretty good.
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Kechla---I had a hysterectomy and chose to stay on Tamoxifen. I do pretty good on it and my BS said I'd only get a 1-2% improvement in my reduction risk so he thought the increased SEs weren't worth it. My biggest issue has been the bone and joint pain which I manage with ginger and turmeric. I didn't have hot flashes on Tamoxifen till I had my hysterectomy 2 years into it but again, I manage mine with iCool and a fan. Mine aren't too bad either. Mostly at night and then it's just a clammy thing for a couple of minutes. And with the iCool I usually only get 2-3 a night. I will say that your exhaustion is probably from your surgery...and all the rest all catching up. My dad is a doctor and told me before I started all this that even thought doctors will tell you that you recover within a couple of months, he thinks the exhaustion takes about a year to recover from. His recommendation was to sleep whenever I felt like it and could and just wait it all out. For me things didn't start getting better in the energy department till I started working out regularly. Just walking every day for 30-45 min shook out the cobwebs and made my night time sleep easier by reducing the hot flashes intensity. Once I was sleeping good at night, my days got better. I've just found out that I get no benefit from continuing Tamoxifen for another 5 years so I'll be stopping it in Feb. Can't wait to see how much of a difference there is.....or if there is a difference at all!!
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Thanks lala1. That is so helpful! I have my first appointment with my MO nurse since my hysterectomy this week, so I can see what her thoughts are for the tamoxifen as well. Originally, they said they'd switch me to an AI if I had the hysterectomy, but once I had it, said to stay on the tamoxifen. I think they said due to bone health, but I don't quite remember all they said in the hospital...
I have attempted to start an exercise program several times over the past few weeks and it just wipes me out each time. I think I'll start some yoga and try to get back on a regular schedule with that.
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