Bottle o Tamoxifen
Comments
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Kbee, I am so sad to hear that they found more BC. You sure did everything you could the first time round. Sending a big bear hug your way
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kbee I'm so sorry ((hugs))
So, I feel very fuzzy headed a lot of the time. It is hard to explain, but almost chemo-brain like but not as bad. Is this Tamoxifen? I don't like it, I find it harder to multi-task, easily overwhelmed and can't think as clearly. Maybe I'm just still having issues from my dx and it's not an SE. Just wondering though if anyone feels like this while on this drug?
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I feel that many of the SE's that we attribute to Tamoxifen are just related to menopause and lack of estrogen. Would the intensification of these symptoms have occurred without the drugs as our levels of estrogen naturally decreased? But then, other drugs affecting the availability of estrogen should have similar SE's? It's amazing how differently each person reacts to each drug - there is a surprising lack of predictability. Most of us have increased hot flashes, but not all...
There are many documented "Mood Disorders" attributed to menopause:
http://emedicine.medscape.com/article/295382-overv...
So, I would think that many of our concerns about how we engage with our world could be related to the limited estrogen availability? I can relate to feeling unusually overwhelmed in certain situations. I have not worked for a few months - so not sure if my professional clear thinking has been affected
I worry about switching next month from Tamoxifen to an AI - trading my personally tolerable SE's for possibly intolerable? Who knows?
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Tangandchris - I had that fuzzy headed feeling on all three meds I tried. I could not find words in conversations and would stumble or have huge pauses while my brain searched. I used to joke I was the walking talking idiot in the family. I would use the wrong word, but similar (for example electronic devices always got jumbled up for me - I would tell my kids to put the leftovers in the tv or to get the clothes out of the fridge). I am a teacher and could not remember names or new subject matter. If I did not write everything down, I would forget it in a matter of minutes. Multitasking was suddenly immpossible. I would ask my children questions at home repeatedly, and honestly have no idea I had already asked them multiple times in the last hour. I was begining to sound and feel like my 93 year old grandmother with dementia. Now that I have been med free for several months, the old me (the intelligent me with a brain) has finally returned. Great relief - I thought I had lost myself.
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knee sending prayers.
Bayoubabe, I too have lost the ability to multi task and my normal dyslexia with speech and names is worse. I have to talk very slowly and make sure I have the full thought in my head first. Makes work all th e more exhausting after a long day. Just another reason I'm concerned about adding lupron. More side effects I don't need.
Scottie
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I am taking arimedex. Three weeks ago after eating some peanut butter for the firdt time in a long time, I started breaking out. The itching was unbearable, so I stratched. Sores developed and scars came. They are disappearing, but I am still itching. I wonder if it is a side effect of the medication or an allergy. Going to the doctor is such a hassle because it costs and transportation is not always available. Will the itching go away?
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I picked up my script of Effexor 37.5 yesterday and took 1 last night. Did not sleep much but hubby sounded like a chain saw so not sure if he kept me awake of the pill. I feel slightly nauseated or queasy off and on but manageable, plus a little jittery. Same as the last time I tried it and threw the bottle of pills in the trash, but this time I intend to tough it out. Five to ten years of Tamoxifen is a long time and I'm fed up with the hot flashes since having to stop HRT when diagnosed in March 2014. BTW - I have not had a single hot flash since before taking it, so I guess it's doing its job.
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I'm on my third week of tamox. No brain fuzzies. Only side effect so far is waking up with damp hair every morning. Let's hope this is the only SE.
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blownaway, I found that I didn't feel well taking the effexor that was not time released. Every time I took a pill I would end up in my chair with a blanket around me saying I didn't feel well. I ended up switching to a time released or slow acting capsule. Good luck!
I, too, feel like I am a slower stupider version of myself. I try to just laugh it off, but it is wearing on me. I just can't keep up with stuff I used to be able to do easily. I wish the docs would at least acknowledge that these drugs affect us. I get to go see my MO in a couple of weeks and I don't even want to make the effort. I tell her all my ses and she says oh, I don't think that Tamoxifen causes that, I think you are tolerating it well. It beats the alternative and I try to stay grateful.
Thank God we have each other.
Hang in there everyone!
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Mine is the timed release effexor - so far only had 2 major hot flashes all day.
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hot flashes are so irritating. i've had them since chemo .. i can't wait until i no longer get any of those monstrous things. i hope weight gain doesn't become a reality for me during tamoxifen. i haven't gained any yet but it's only been 2 weeks since i've started taking it.. here's to hoping
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I am glad I'm not the only one feeling mentally fogged or just slow. I'm struggling with some other personal issues that include depression, so that may be a contributing factor as well. I do believe that the Tamoxifen makes all of these issues worse or harder to cope with and I think about quitting it alot. I'm just scared to do it....you know?
As far as talking to MO's about SE's, forget about it. My MO told me right before I started taking it that she's never had a patient not do the whole 5 years before. She told me that after a few months SE's subside and most of her patients say they can't tell any difference. I like my MO, but when it comes to this sort of thing I get the impression that she just doesn't want to hear it. I suppose the alternative in their mind is worse, so I get that...it just sucks.
((hugs)) to everyone
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Before Arimidex and now Tamoxifen, I had no idea of the value of estrogen in my system. I had a hysterectomy (ovaries still in) in my mid 40's and sailed through menopause in my mid 50's with a few months of hot flashes. At 63, Estrogen/progesterone fed breast cancer is diagnosed. When I met with my MO, I expected there to be nothing else to be done since I had no contributing factors. Then I learned my creeping body fat had estrogen in it (40 years worth of slowly gaining a pound a year.) So I started Arimidex with horrible joint pain, no sleeping, capillaritis on calf on right leg, dry skin and hair, and vaginal atrophy. So that is what my estrogen has been doing all these years before it started being sucked out of my system. My change to Tamoxifen allows me to sleep again and joint pain has diminished with time. So when my MO says that my SEs are not caused by the meds, I just reply that they are caused by the work they are doing. Just like everything else in my BC, I take it one appointment or prescription refill at a time.
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tangandchris - I think your MO is a liar. You look at the statistics for women who do not continue on these drugs for one reason or another - there is no way all of her patients complete 5 years. Just saying... Why oh why can't these doctors be honest and up front with us? Hope your side effects ease up soon; I was not so lucky! Hugs!
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Yes, why can't they just be honest? My MO said that there is no test that confirms menopause (wanting to stop Lupron due to SE)... she also said that there is only one manufacturer of Tamoxifen (considering switching to alleviate SE)... Does she think that I am stupid? As my darling husband explained it to me, they just want to get their prescribed chemicals into you - how you feel is not important to them. My Tamoxifen SE have leveled off... couldn't she just tell me that they might?They just want to kill cancer cells. I often feel like a petri dish. I wish that they could understand QOL issues. A little empathy would go a long way. I also believe that they do not have time for empathy.
It was interesting, when I participated in a trial, they were more interested in quantifying my fatigue than actually helping me to deal with it.
Where would we be without them? I have to remember to appreciate them.
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Research shows that about 25% of women ditch these drugs because of the ses. I came across a paper comparing femara with tamoxifen which cheerfully stated "just the usual menopausal side effects" Written by men I guess!
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Sending hugs your way, Kbee... I hope you're doing ok.
xoxo
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Saw MO today and she started me on lupron and Neurontin. I discussed my Tamoxifen SEs and other concerns about ovarian cysts etc. . .with her at length. Effexor was an option but we agreed that the Neurontin was a better option since it will hopefully work on my nerve pain and my hot flashes. Keeping fingers crossed.
Scottie
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I find it so irritating that my MO won't acknowledge that some of the problems I am having are SEs of the tamoxifen but yet when I talked with my Gyn, she told me that all the problems I have been having are known SEs. What is wrong with these people!
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MO's...it's a love/hate relationship isn't it?
Mine told me at my last visit that pain wasn't usually associated with cancer. HUH?? I was telling her that I'd been having some bad shoulder pain on my cancer side, like pain that had been going on for a couple of months. I was worried of course, and I think her logic is that if she just tells me that it isn't what I think it is I'll calm down.
In this case she was right, she gave me some celebrex and it has helped the pain. But, seriously pain is not associated with cancer? sheesh...does she think I'm an idiot?
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L2girl--From what I understand, having ovarian cysts in and of themselves are not a reason for a hysterectomy but if you have other multiple issues then it's something to consider. My ovarian cysts were simple cysts. It's why my gyn was ok with watching them. But I also had thickened lining, enlarged uterus and fibroids so his watchful waiting wasn't limited to once a year at my annual, he was doing an US every 2-3 months. And for a while, everything stayed the same (heck, my cysts actually went away for a while!). But then all my measurements got worse, cysts came back and he just said we could do this watchful waiting forever and hope for the best or just get it done. I chose to get it done since I'd already dealt with cancer. Also some ovarian cysts are quite painful so that could be a reason to remove. And there's always the possibility of torsion with cysts which I really didn't want to deal with cause that can lead to emergency surgery. Every woman is different as is every doc. You just need to research. Try this link...... How do I decide on hysterectomy. This helped me alot. Very easy to understand. Let me know if it doesn't work.
Downey30---I take one 550mg of Gaia Turmeric (my holistic doc said this was the best brand) and 550mg of ginger (he said didn't matter brand) once a day. My holistic doc said to take up to three capsules of each but to start with one and see how it goes. One (550mg) worked for me. But definitely give it time. I had to stop my turmeric and ginger 2 weeks before my hysterectomy and didn't start it back till 2 weeks after. I was doing an experiment.....I also had to stop the Tamoxifen 2 weeks before. By the time I got to surgery, I felt great! None of my usual issues that I contribute to Tamoxifen like joint pain, nausea, lightheadedness, bloating, burping, etc. I felt kinda vindicated! Then I started back on my Tamoxifen a week after surgery but did not restart my ginger and turmeric. I wanted to see if these 2 supplements could have contributed in any way. (The only other supplements I am on are fish oil, magnesium and vitamin d, all of which I've been on for far longer than Tamoxifen) Within about a week of restarting Tamoxifen my joint/muscle pain started up again. So I restarted the ginger and turmeric. It took about a week but my nighttime joint/muscle pain is gone. My conclusion is that the turmeric and ginger are what help with that. I also take a tiny dose of melatonin which does help but the other 2 are the key I think. On a side note, my bloating, nausea and dizziness did not come back with Tamoxifen. I am now attributing those issues to my enlarged uterus, fibroids and cysts....for now. Time will tell. Still having burping but it has lessened. Haven't yet figured out the cause of that! Probably still the tamoxifen. I plan to stay on it for at least the 5 years if not all 10 so I'm just working on treating the side effects. And I love to research so that helps!!
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Ovarian cysts are a very real thing on Tamoxifen. I was unfortunately one of the people that got them. I was on Tamoxifen for almost 2 years, dealing with all the other side effects thinking I would get them if I had my ovaries removed either way, so I was planning on going all 5 years. I started feeling very bloated and uncomfortable in that area and sex became painful because of the bloating issue. I went to the OB who did an ultrasound and immediately scheduled me for surgery. I had over 23 cysts develop! All, thank God were just cysts, not cancer but it does happen. I know they are considered not common, per my oncologist, but just be aware of symptoms.
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Has anyone suffered from constipation from Tamoxifen? If so, what have you done. I feel like my metabolism has slowed and that's one of the side effects. tx
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momwriter - that was a huge problem for me on Tamoxifen. I started taking probiotics, prebiotics, and fiber. If I missed even a day, I had issues.
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scvmom65, thanks for the heads up as to the symptoms of ovarian cysts! I grow cysts everywhere so this is a definite possibility for me.
Wow, over 23 cysts...what a shock that must have been!
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Hi saw my surgeon this past surgery about my hernia - he is the same surgeon who did my breast surgery as well as my sisters so knows my history. He said I should get my hernia fixed but seemed more concerned with my enlarged ovaries. He seemed more concerned than any doctor I have seen so far. His wife is a breast cancer survivor. He also knows I had 4 family members with BC in 2013 and a sister who died of stomach cancer which I guess increases my chance of ovarian cancer- YIKES- Anyway- I told him I could not see a GYN til March 19. He said that was unacceptable asked if it was ok if I see the one he often does surgery with . I said I trusted him he told me hang on and he actually walked down the hall into her office. He said her mother is a breast cancer survivor so she also understands the importance of not waiting. He made me an appointment with her this coming Monday. He told me that after I see her on Monday, we will talk and get it lined up so I can have only one day of surgery to have both surgeries done- He said he will do the hernia surgery and she can do her part after that. I was so shocked he took charge. He also had me do some blood work before I went home and later that afternoon her personally told me that my ca125 test was elevated. Not greatly but elevated. He said that in itself was a reason to have my ovaries removed let alone my history of breast cancer as well as my strong history of cancer in my family.
I am really scared of going through surgical menaupause as I do not think I can take anything. UFFF.. I was just feeling better and just ufff.. But at least someone is listening.
TJ
PS I asked the surgeon if Tamoxifen caused Ovarian cysts. He said he had not heard of it. UFFF... Why is it that this is not published a lot? Makes no sence that we are not watched better.0 -
You sound like you have a great doctor! We need more like him. Tamoxifen is known for causing ovarian cysts. My OB/GYN talked about it with me last year.
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ndgrrl, I'm not sure your age, but I had HYST/OOPH when in I was in perimenopause due to ovarian cysts and uterine fibroids. My Gyn slapped on an HRT patch after surgery, which I was not even aware of until I broke out in a rash from the plastic. Anyway, I did NOT want HRT due to family history of BC, so I did not use any and was fine through the rest of menopause. I had continued hot flashes and vaginal dryness, but that stopped in a few months. I'm glad your Dr is being pro-active. The surgery for me, was easy; recovery went well. I'm glad I had it done, even though removing my ovaries didn't help enough to keep me from getting BC anyway! I've heard of Tam causing uterine thickening, but nothing with ovaries. Good luck on your appt.
On another note, what is everyone doing to keep weight gain at bay?
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ndgrrl---That doctor sounds perfect!! I love a take charge kind of doc! I think he is spot on in his advice to you with your history and your family history and especially the elevated ca125. My biopsy was clean, my ca125 was normal and I STILL did the surgery based on everything else. I don't regret it for a minute. I am 51 and almost 3 weeks out and barely any signs of menopause other than a warm flush here and there. I was still having periods so not in menopause but possibly headed there so maybe that's helping. Our history of BC raises our risk of reproductive cancers including colon and stomach. All BC survivors need to be very aware of this. Even the guy that did my colonoscopy last year said I had to do one every 5 years instead of 10 because of my BC. I know you're afraid of surgical menopause. Trust me, I totally wigged about it. I don't mind surgery or recovery. I can do that stuff standing on my head. But the idea of being hurled into menopause freaked me out. And here I am on the other side.....so far, so good. And I can't take anything either. Doc just said we'd worry about that when (if) the time came. When you get down to the bottom line, surgical menopause, no matter how bad, has got to be better than another cancer right?
Maybe show your doctor these....
Ovarian Cyst Formation in Patients Using Tamoxifen for Breast Cancer
Ovarian cysts in women receiving tamoxifen for breast cancer. - PubMed - NCBI
Heck even webmd talks about it!
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Hi, Thanks for all the great advice and reassurance.
I saw the OBGYN today and she seemed very nice. She said if she were me she would remove her ovaries because of my family history of cancer and my history of cancer and since my ovaries are large.
I do have to have the old fashioned surgery though as the ovaries are too big for the laparoscopic procedure but since I am having a hernia fixed at the same time the incision won't have to be too much larger. Her and my surgeon will work together and will schedule it to be done this month, which is WOW, hard to wrap my head around things going so fast. She did say I will have to be out of work up to 6 weeks but since I have an office job maybe I can go back in two for part days, but she said we would see how that goes.
I am already taking Effexor which she said will continue to help me and we can up that if we have to, but last time I tried to up it I wanted to eat everything in sight. She also talked about Natural things and said we would discuss them when and if I needed them.
Still scared but you gals do help a lot .. Thank you
As for weight- I was told my my surgeon that excess fat causes estrogen so end of July I started following the Medifast Program and all the health tips but since then have just tailered my eating habits and will sub in one of those meals. But I basically just cut out most carbs and watch sugar and I have lost 40 pounds so far.
ps-I forgot to mention my GYN also didn't think Tamoxifen caused cysts. GRRRR
I asked her if I had to go off Tamoxifen befor surgery and she said no, but that maybe the Surgeon would have diff ideas. I called the MO who is subbing in until the new MO comes( he is 75 and so funny) and his nurse is supposed to get back to me with my answer- I felt the MO would be a better DR to ask about Tamoxifen than the GYN. I always thought I had to stop it because of blood clots?
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