Bottle o Tamoxifen
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Hey Everytamoxibody!
Oh Harley,I am so sorry you are depressed. I do think it's the Tamoxifen. We've all seemed to have a bout of it this year. Also, I think it's a little dreary after all the treatment is over and we're back to "normal" life. Of course it's fabulous we're all well again but real life post cancer is challenging, no? I'm in therapy, anyone else? Helps me roll with the punches.
Love, Basha0 -
Dear Ladies,
I have not read or posted to this Discussion group in a LONG time... mostly b/c I have been blessedly able to put BC out of my mind (well, most of the time).
However I come today with two questions for tamoxifen users.
(1) I have just passed my 5 year "anniversary" of diagnosis (and so far, no sign of recurrance, for which I'm profoundly grateful). And, in another 2 months I will be completing my 5 years on tamoxifen. I have been lucky, as the side effects were very minimal : some hot flashes at first , but not bad; some hair thinning, but not bad; some itching, but not bad. What I'm wondering is whether I should expect any changes or "side effects" of going off tamoxifen?
(2) This may sound crazy, but has anyone who does any singing noticed any change in their singing voice while taking tamoxifen? My voice was never great, but adequate for choral music, and the past 2 - 3 years it's really gone downhill. I think that estrogen can effect the voice, so it seemed perhaps reasonable to me that tamoxifen could as well. Anyone notice anything like that? It would be great to hope that my singing voice will return once I'm off.
Best wishes to all,
Nina
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Basha,
Thanks! You are so sweet!
I don't think I could see a psych. or one of those counsellors... I really don't think they could help me. I'm glad to have my surgery over. As you say, now it's time for life to go back to 'normal', whatever that is.Hope everyone ihas a great weekend!
Harleyl
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Harley,
Sometimes jumping back in is the best thing. You know I was one of those counselors for 30 years!!!
Chuckling, Basha0 -
hi tamoxisters..
i posted here some few times ago..
i took tamox in 5th of may and had realy bad reaction to it,,my onk thinks it was dut to bad timing as i was just so close to have my 2nd period after chemopause,,so i stopped,,
i restarted again in 13th of may and took my 1st zoladex inj in 19th may,,my onk wants me to keep with zoladex for 30months,,
i still have the same side effects (nausea,upset stomach,loss of appetite)i can accept all of them as i didnt have the same deep depression and continues crying that i had in my 1st day,,
so..am here again now,,12days with tamox and 1week after zoladex..i have 2 q??
1.anyone is able to keep loosing weight with these tamox and zolad??i was loosing weight for the last 6 weeks,,i lost about 20punds,,and am not eating much specially after tamox,,will i be able to keep loosing or this will change??and howlong it will need till i notice that i cant loose or that its harder to loose??
2.howlong be4 i may feel some sexual side effects related to decreased lipedo??driness??others???am ok till now ,,howlong it will take ??is there anything i can do from now to ease these side effects??
sorry for the long post but just didnt know where else to go..
tganks in advance for any input sisters..
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Ulla,
I am just on Tamox, not chemo. I am doing weight watchers and have lost 11 pounds so far. Is the drug you're doing a steroid? Think that is associated to weight gain. I have had no sexual problems on Tamox, some hot flashes but nothing else.I'm prone to severe depression but nothing like that on Tamox.
Good luck.
Basha0 -
DERA BASHA ,,
THE ZOLADEX INJECTION IS TO SHUT DOWN MY OVARIES CHEMICALLY AND TO PUT ME IN MENAPAUSE..
ITS NOT STEROIDS AS I KNOW..
THANKS ALOT FOR TELLING ME THAT U CAN KEEP LOOSING WT WITH TAMOXIFEN,,ALL WAT I WAS READING IS THAT IT COZ WEIGHT GAIN..WHICH TERRIFIED ME REALLY..AS I AM WORKING SO HARD TO LOSE THE EXTRA WT THAT I GAINED WHILE I WAS ON CHEMO..WITH ALL THE STEROIDS THAT THEY GAVE ME WITH IT,,I WAS SO HAPPY THAT I LOST ABOUT 20 POUNDS ,,,
THANKS AGAIN FOR UR REPLY
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Hey everyone, I've been away from the boards for awhile. In the past few weeks my fatigue returned in spades. I just couldn't really cope with anything other than work and sleep. I had a 6 month followup MRI/mammo last week and also some blood drawn. Found out that all the symptoms that I'd been blaming on the tamoxifen (fatigue, headaches, irritability, and nail issues) belonged to something else. I'm very anemic. So those of you that have been experiencing extra bleeding due to tamoxifen, watch your iron levels. Will be having my hyst/ooph in mid-June so hopefully that will put an end to the anemia.
FYI, I changed my name to avoid further confusion with the other txgirls so now it matches my avatar.
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Good morning, ladies--
Welcome/welcome back to the new folks! Nina, congrats on reaching the 5-year mark...I haven't read anything anywhere re: problems stopping tamox.; please keep us posted if you have anything. My singing voice is just the same--I can still carry a tune, but that's about it.
Ulla, I've lost some weight on tamox, but I've really had to work at it. No zoladex for me, though, so I can't help you there. As for sexual side effects...I'm rotting on the vine here--no nothing for a loooong time--so you'll have to depend on others for help.
Yellow, hope getting your anemia under control will help you feel better soon. Glad you're back!
I'm actually glad the weekend is over, for the first time ever. I made it through the long day in the pool Sat. and two "real" dives yesterday; I'm two dives away and a written test away from getting my scuba certification, and I'm not stopping now. I know that I'll only dive at resorts where there are people who haul all the equipment, and where there's a dive master who's only concern is making sure I don't die or get lost.
Weird thing, though--for the past several nights I've had the mother of all night sweats. I haven't missed a dose of effexor, which I thought was supposed to help with that. Hopefully it's just a passing thing...I was pretty miserable last night.
Not much else to report...Basha, are you rowing this weekend? Harley, are you doing okay? Deb, Virginia, and the ton of people I'm missing...hope you're having a wonderful Memorial Day weekend. Summer is here (almost)! 13.5 days of school left--not that I'm counting. ;-)
Take care...Lynn
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Hi Lynn,
Glad your scuba weekend's done. Yes, I rowed a lot this weekend. Our club fed 12 Swiss rowers who were about to row from my town to Mystic, Conn., where the river empties into the LI Sound.It was fun and someone made a heavenly rhubarb pie.
Next week I'm off to LI myself to paint. I am saving you and everyone else a lobster. Party on!
Basha0 -
Hi guys. Asha, I too am thinking of going the therapist route. Feelings all jumbled hopefully that will help out. Lynn: have a blast diving! I'm too much of a scaredy cat to try different things.
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Hello galpals,
Been away for a few days but I caught up with all the postings. I'll try to hit everyone ---
Ulla,
Weight loss is definitely possible -- I was losing for the first 3 months I was on tamox and now I'm stable. I think if you want to lose, you will.
Harley,
Glad the surgery is over. It's all going in the right direction now. Keep your chin up -- you have friends you didn't even know about!!
Basha,
Your rowing so impresses me!! My brother rowed and his best friend was captain of the team at Northeastern and rowed at the Henley races even in high school. But relax on LI!! BTW, did you ever get a website up with your paintings?
Virginia,
I love the new pix! Your hair looks mahvelous, dahling!!
Lynn,
Not to make you jealous but my daughter has 3 hours tomorrow and she's done for the school year. Enjoy your dives! You've worked hard to get there.
I know that I've missed some -- sorry, I'll do better next time.
I'm getting ready to get my 3rd bottle of tamox. I'm putting marks on the side of my pill organizer to count each bottle.
Have a great night everyone!
Deb
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Basha,
thanks for your kind words of advice. It helps to know that others are also experiencing this depression, and I am sure I'll be ok.
Deb,
Thanks! You are so very sweet! In times like this, it's easy to think I'm all alone adrift in a sea of sadness. It's nice to know that someone is thinking of me.
Harley
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Harley,
Any time!! There are so many times I see the scar or have a flashback that I just want to ball up and cry. So know that you are NOT alone. We all go through some of the same feelings -- the triggers may be different, but we all know the sadness. You are not alone.
Well gang, I got a part time job today. This will get me back into the swing of working. I had another part time/temp job that I had just started when I had the biopsy and got the dx. Nothing big -- I'll be a fill-in receptionist starting on Wed. next week. And we leave for Baltimore tomorrow for the weekend. I'll report in when I get back.
So all my friends -- have a great weekend!
Deb
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Harley and Deb,
I second Deb that I too have overwhelming moments or hours or days. I flash back to the O.R. or have nightmares. There's no "right" way to deal with this. In some ways, telling you all helps the most.
Enjoy Baltimore, Deb; I leave for NY Sat. Congrats on your new job! I just ended my coaching and can be a retiree again. No, my website isn't done. I'll post a few more when I return.
Harley, I hold you tight in my heart.
Love, Basha0 -
For me, the biggest trigger for tears is the exit off the interstate that I took to go for rads. I drive by that exit on the way to and from work 2, sometimes 3 times a week. Every time I tell myself I am not going to cry, and every time I see the exit sign, flash back to the fear and horror, and start crying. I used to wake up every night after nightmares about treatment, but now that only happens 2 or 3 times a week. So you are not alone, Harley. At this point I just accept the crying is going to happen, make sure there are kleenex in the car, and let it happen. Maybe it will stop someday.
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OK Gals, I couldn't get lobster but I got crab. I think we should have a picnic on the beach.Layne, could you PLEASE bring a chocolate cake. I haven't had any for 3 weeks. Native Mainer, YOU could bring the lobster.
For real, I'm near the tip of Long Island, the fish tail, and it is sooo beautiful. I've been painting and I'm here solo.
Love, Basha
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Okay, Basha...count me in! Sounds wonderful...seafood, time to paint, gorgeous scenery. I'll leave the painting to you and enjoy the rest. How much longer are "we" staying there?
The thread has been quiet lately...as a teacher, this is a busy time of year for me. I can't wait for summer vacation--I'm done on June 13. Then I'll hang out here for a couple of weeks before heading to NY and the endless stream of dr. appts.--and time with my family. Life is good!
Harley, I don't know if you're reading the boards, but I'm sending hugs, good karma, and prayers your way that you'll be feeling better soon. Depression sucks...miss you!
Layne, Virginia, Deb, and everyone else my addled brain can't think of at the moment...hope you're all doing okay.
Gotta get ready for school...take care, ladies! You can find me in any car on the train with food these days...I'm eating with great abandon. Big sigh...
Lynn
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pls sisters ..
am really confused now,,need u to tell me wat happenned with u ....
i was 34 wen diagnosed with BC last august..now 35..
i never lost my period during 6 chemo FEC ,
after the chemo finished in 25 jan.my period dissappeared for 3 months(january,february,march)
then the periods came bak in 16 april for the 1st period after chemo and rads and in may for the 2nd period after chemo and rads..
i started my tamox in 13 may and had my 1st zoladex injection in 18 may and i thought i will not have any periods after the injection and the tamoxifen..but i had my period for this month today|!!!!!!!!!!
is that normal?or it means that the tamox and the zoladex didnt work??????????
am really worried
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ulla--
call your onc's office and ask those questions. I'm taking lupron, and one of the side effects is vaginal bleeding. I don't know if the same is true for zoladex, but I wouldn't be surprised. But any time you are worried, you should call the doc's office, giving you information and answering your questions is what you are paying them for.
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i did called the onk office,,they refered me to have some hormonal blood tests 2moro,,i am more worried now??
wats heppenning to me??
the blood is less after three days but its color is blackish,,not red as i used to have it previously!!!
cant think ..just worried as hell
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OK, I've called my cousin and we can have his entire lobster catch at boat prices--currently just over $2 a pound!
Arimidex is giving me very little trouble. I have occasional facial flushes that feel warmer than blushing, but aren't hot, and I'm assuming these are hot flashes. The arthritis pain in my knee has gotten a lot better, but it usually does during warmer weather and may mean nothing. Depression is still an issue, but I'm not having suicidal thoughts every day, and the fact that I actually sleep 3-4 hours in a row at night most nights now, which may be because I feel I can have confidence in the lupron/Arimidex treatment and had none in the tamoxifen.
So far, if anyone is having trouble with tamoxifen, I would seriously recommend giving one of the AIs a try. Compared to rads, Arimidex is a piece of cake.
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Hi everyone,
I'm sorry to see that some of you are dealing with the blues, too. I'm doing much better at the moment, and hoping it doesn't come back anytime soon. It was not a pleasant experience.
I saw my rad onc recently and he was surprised that I'm not having mammos every 6 months because he felt I should. He then told me that since I see my med onc so frequently that I don't need to see him any longer unless I want or need, too. Woot! One less dr to see. lol
So, when I saw my med onc a few days ago, I casually asked him why I wasn't having more frequent mammos and he said that the standard of care was yearly mammos when no abnormalities are seen. Well, that takes care of that concern and since I won't be seeing my rad onc again I don't have to figure out a way to address his concerns. I also told him that I have a tender spot in my arm pit, close to my bad boob and he felt around and asked me about rib pain then moved on to something else. So, I guess I don't need to worry about it. Of course, I have no idea what rib pain would feel like, and it's hard to ignore any new ache or pain, but I'm going to try. Today, my bad boob has a burning sensation on and off which I know is hormonally related, but it makes me worry that the Tamoxifen isn't doing it's job. My onc will test my estradiol levels at my next appt in 5 months (instead of 3, yippee!), but I doubt I'm getting any closer to menopause. Oh, I did ask if my rad onc's office would make me an appt for a consultation with their new gyn onc. I want to see what she thinks about whether I should remove/shut down my ovaries. Unfortunately, she only works one day a month in their office (she comes from another city), but she's the only gyn onc in town so I'll just have to wait. That reminds me, my internal and abdominal ultrasounds were normal. That was a relief since I had fears of the lining building up since I'm not menstruating.
My bone density scan results were much better than I expected. I have osteopenia in my hips, but the rest of my bones including my spine are normal. When I consider how high risk I am for osteoporosis, I'm very happy with those findings. I plan to be more consistent with my calcium intake and to use my rebounder trampoline more to help improve my hip bones. I wonder if that's why the Tamoxifen makes my hips ache more than anywhere else.
I'm sorry I'm not doing individual shout outs, but chemo brain makes it so hard to remember who said what. I hate chemo brain!!! It seems as if I'm constantly apologizing to someone or other for something my brain got wrong. It's as if my brain is on time delay, too. Given enough time, I'll usually remember certain things, such as names of people or things, or where I know them from, but it can take awhile which can be embarassing at times.
Best wishes to everyone!!!
Cynthia
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Hi everyone,
Thanks for all the wonderful warm wishes.
We had some friends visiting from Florida for a few days and they just left this morning.
I am feeling better, but it comes and goes, and it is nice to know that this is a very common thing.
Cancer sucks!, and I just wish I could move on with my life, and not think about the things that it took from me... it took my youth, my happiness, my sex life, and now I feel like an 83 year old woman, with hot flashes and insomnia, and even my friends are getting tired of me.Thanks...
Harley
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Good morning, all--
Cynthia, it's so good to hear from you! Sounds like your medical news is good, and I'm so happy the depression is better. Re: radiation onc, I finished treatment last Nov., and I've decided not to see mine this summer when I go back. I'm not having any trouble, no bad after-effects from the rads or anything, and I'm seeing my surgeon and medical onc. Unless someone can convince me that it's necessary, I'll use my $15 copay toward a lunch out or something.
What's the deal with right hips?? M., mine gives me fits some days. Hope you get some relief...I've been using Traumeel pills and ointment; they seem to help when I use them faithfully.
Harley, we'll always welcome you with open arms. You're right--cancer DOES suck. Sending hugs, prayers, and good karma to you in NC.
Basha, hope your creative muse is sitting on your shoulder as you paint in LI.
VA, hope you and your dad are doing well.
Layne, how scary about your cyst...so glad that's all it was. Ah, Mexico--I've never been and would love to go there.
Native MEer, my mouth is watering for your lobster! Glad you're doing well on Arimidex...I'll probably be switched to it in the not-too-distant future; hope I do as well.
Ulla, hope you got some answers to your questions...sorry I can't help you.
TGIF...the school year is winding down. Today I'm seeing very few kids, but have paperwork and room cleaning to do. Wahoo...the end is near! Take care, ladies--
Lynn
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Cynthia,
Good to see you seem to be doing better. Tamoxifen HELPS our bones, I heard, so maybe it is helping your hips.
Lynn,
Thanks! You are so sweet! I am still struggling with this depression, but I have to get through it somehow, so I keep plodding along.
Happy Friday to you, and all the rest of the Tamoxi-train gang!
Harley
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Hey gang!
We're back from Baltimore (Bal'mer, as Layne said). We saw the Newseum in DC on Sat. then Capitol Steps. That was a riot! My now 14-year-old daughter (her b-day was Monday) got most of the political jokes but the double entendres went over her head -- I think! Then we went to the Aquarium on Sunday at the Inner Harbor. We also walked over to the Constellation (Civil War era Tall Ship) and found a 2nd ship. Turns out it was a Spanish training ship and it was getting ready to leave the harbor. So we watched the tugs get her out and it was very cool. Flights were uneventful and on time so that was good.
Layne,
Glad to hear Mexico treated you well. Sounds like you had a good time too. And yes, the weather was lousy most of Saturday, good thing we were inside most of the time. We did go over to the Korean War Memorial -- WOW. It really looks like they are walking through that field. And so glad to hear your 'thumb' was just a cyst.
Basha and NativeMainer -- OOOOO lobster! Can you send some out this way? Basha -- keep the brush to the canvas (like the pedal to the metal). The inspiration around you must be heavenly. I'll be working on chocolate for you guys.
So my hubby and daughter took me out to dinner for my b-day tonight. We polished off a bottle of champagne (no help from our daughter -- don't worry) and had a great meal. We know the manager and he gave us strawberry shortcake for dessert -- MMMM. So I'm a little tipsy at the moment but wanted to touch base with you all. Even if I don't mention you by name, I've read all that's been posted and I'm thinking of you -- just not very clearly right now. Y'all are great.
Deb
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Dear Everytamoxibody,
I did have a lovely art retreat and really enjoyed our soiree, especially when we all went skinny dipping at midnight. The cake tasted better after, didn't it??
Hey, do you all get hotflashes in cycles? Mine come maybe monthly now, and then disappear. Also, when I had my foot xrayed for plantar faciitis, they found arthritis in my same foot, big toe. I never felt it til the Tamox, so I wonder if it "irritates" mild arthritis, like in your hips Cynthia?
Great to see you back.
Hey Layne, thanks for bringing 3 cakes. Next time, could you bring a Sacher Torte? Don't mean to be greedy....Hooray Lynn, you are at the finish line.
Native Maine, Thank your cousin. Deb, there's some left for salad.
Love, Basha0 -
Hi Ladies! I finished my CT treatments on May 7th and just started tamoxifen a few days ago. The blood clot and stroke risks are freaking me out. Does anyone know if aspirin therapy helps to reduce those risks? My onco is a nice woman but I don't have a lot of faith in her since she contradicts herself often and I don't feel like I always get the full story.
Debbie
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Hi Everyone,
Today, I went to a support group for people with cancer and it was all women with mostly breast cancer. It wasn't as good as I'd hoped, and I'm still processing some of the comments I got. When I mentioned that having had bc still affects some of my choices and does anyone else do that, they basically told me that I need to live in the moment and assume that I'm cured. Are they right? It's not as if I let it affect my day to day life, but when I have to make a major decision, I do consider that I might not live a normal life span and may have more financial obligations than a person without cancer. I don't feel that makes me a pessimist. They also told me to avoid the internet and online groups. Yeah, right, like that's going to happen. lol I like you all much better than these women and I feel better informed than they are, too, thanks to you.
M. and Basha - my hip pain seems to be cyclical so I'm wondering if it happens when my estrogen is higher or something. My hips ache/burn for a day or two. I also sometimes get a mild ache in my neck at the same time. I really need to make an effort to keep track of how often it happens, but just haven't gotten around to it. The burning pain in my breast only lasted 24 hrs and not even a twinge after that. I hate these scary aches and pains.
Harley - Sorry to hear you're still dealing with the depression. It sucks to suddenly feel so old. My "oldness" had been gradually coming on due to difficult pregnancies, births, and taking care of little ones way too late in life, lol, so treatment didn't add too much to it. I have hot flushes infrequently now, but I do tolerate coldness better than I used to so I must be warmer in general now. It's kind of nice right now, but when it's over 100 degrees outside soon, I may not think so. lol
Debbie - yes, aspirin therapy lowers the risk of clots and both my onc and gyn recommended I take daily aspirin. I haven't been good about it, though. The risk of having a clot/stroke is extremely small unless you have a strong family or personal history of them.
Have a great weekend all,
Cynthia
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