Bottle o Tamoxifen
Comments
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Anna, Taking that first pill is challenging mentally. For some reason I had more difficulty facing that than surgery and radiation. It makes me feel like I'm always a patient, not someone who has overcome cancer. But, I know that it is in my best interests to take it. I started one week after radiation ended, and have gone through one menstrual cycle.
I did start right away with hot flashes and they subsided once I got my period in July. But they are now back at night, while I'm sleeping. I always sleep with the ceiling fan on, even tho I have central air! I take the pill at night right before I go to bed. My guess is the hot flashes will stop while I have my period and then resume.
I walk daily and have for years. I listen to my iPod and enjoy feeling the sunshine (also good to get the Vitamin D). I feel this will help with the side effects of weight gain. I am not looking forward to the winter months here in New England, as I find taking the time for myself every day helps my outlook. I am also very aware of what I eat, trying to always have my 5 fruit/veggies each day.
I am tired at night, but I did return to work full-time on 7/14 so that may contribute. And it's been two months since my last radiation treatment so it might be cuz of that, too? The tamaxofin seems to knock me out ... and unless I have a hot flash while I'm sleeping, I sleep through the night. Some of the ladies here have the opposite issue, insominia. It just shows that everyone's reaction is different. I am the type of person who needs my sleep or else I'm miserable. I breastfeed my kids and my second baby was collicky and I went w/o sleep for 6 months. (Best form of birth control is I know is to have a collicky baby!) I'm very appreciate that I haven't had trouble with the sleeping.
Deb - great job with your fundraising. We all appreciate the energy you put into raising that money. It will mean alot to do it with your family also. Your daughter will always have an appreciation for those dealing with cancer - my daughter's college runs a Relay for Life and she and her friends do it every year. I couldn't participate this year, but I'm hopeful I can attend the Survivors dinner next April. And the office manager sounds like a big time jerk!
My son is attending his friend Tori's party on Sunday celebrating her being cancer free. She's 15 years old and had surgery, chemo, etc. She's quite an amazing girl. I'm going to pick up a gift certificate for a facial, figure what teenage girl wouldn't like that.
Enjoy the weekend, girls. We are having friends over Saturday night. I'm looking forward to enjoying the company, food and enjoying a beer or two.
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Well, we walked yesterday -- among the 25000 others who were there. We had a good time and thankfully, the weather wasn't TOO hot. (It is August in Kansas City!) I did end up with over $1000 being raised so I was happy.
I also had my annual mammo and u/s today. I was called back a few times for addtional views and I was getting so anxious but it turned out ok. I'm clear. I cried when I got home. I was so glad that my dh was home. I just dissolved. So I'll get to my one year anniversary on the 27th knowing that I'm ok for another 6 months.
Murph,
Thanks for the encouragement. And I was tired from the rads for about 4 months or so after I finished, so give yourself a break. Your body is still healing from that too.
So have a great week everyone. You all have been quiet this weekend! Be happy!
Deb
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Dear All,
Wow, Deb, what a great walk and then the cherry on the top with your good test results. I can relate to dissolving in tears after. My kind surgeon says each mammo gets a little easier.
It's been raining non stop for weeks here and I can't row cause the river is too fast.Biking a bit and fighting off depression. Everything else ok.
Love, Basha
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Good morning, ladies--
Deb, congrats on both your walk and test results...woohoo! I'm so happy for you.
Basha, hang in there...I hear you about the rain. Yesterday I drove to Albany w/ my sister, and we had HUGE storms almost all the way up and back. Take good care of yourself.
Hi to everyone else...sorry not to talk personally to everyone. Equal parts laziness/busy--I head back to Japan tomorrow morning, and I can't tell you how much I hate packing. Also, breast MRI today, and my sister will be having an ultrasound at the same time on what we hope and pray is a complex cyst--she's had lots of them. Keep your fingers crossed for her!
Take care, everyone...happy Tuesday!
Lynn
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Way to go Deb! On both fronts, the walk and the great test results. I think we can all appreciate the anxiety that comes with these tests. Although we know they are helpful, it certainly causes us alot of emotions.
I have my appt tomorrow to find out the results of the genetic testing. I'm really busy with work so that has kept me from thinking about it too much.
Hang in all there everyone!!!!! Have a safe trip Lynn and positive thoughts for your sister.
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Hi everyone, I have been reading a lot of your posts so I can get to know the awesome group I will be joining. I had my mammogram and biopsy end of March, found out April 1 ( on April Fools day no less) I had BC,.lumpectomy in May and started rads in June. I just finished them on August 11, and looks like I will be taking the tamoxifin route the end of this month. I have done well so far, but this is the journey that bothers me the most. Funny, surgery didnt frighten me nor did the idea of rads, but this is the one I am not looking forward to. Guess its a little of everything. I have done everything I can so I can say I have no cancer, I have gotten rid of it..........but this is............so I don't get it again. What a thought!
Donna
Donna
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Murph, you amaze me, proud of the good eating and daily walks...you inspire me...I too finished rads 2 months ago...and have some effects still...the bad boob has swelling ever so slightly that the bra has to go sometimes mid-day...the rad nurse told me that the radiation would start to wear off by 6 weeks after I finished...but it must be more for me...Murph, i am so happy to hear about Tori. It breaks my heart with what she has gone through, I know she will be a strong young woman, and with what you have been thru and Tori, your son will grow from these experiences as well.
Deb, hiphiphorray on the mammo...I would have went nuts if i had been in your shoes and had to get called back to have more pictures done. Are you getting every 6 months mammos. I will have my next one in January, a year from the dat of my last...though I had an MRI in March and the surgeon ultrasounded areas in July....I guess I'll just have to be proactive with BSE and if I notice changes, then contact the MD. I am glad you got the >1000$ for the walk, and so many people, I don;t think the population in my town is 25,0000....koooool!
Basha hand in there! dreary weather is depressing, I live in NC, and just notice we are expecting similar rainy, stormy weather starting tonight...
Lynn have a good trip to Japan. and thinking of your sister
Donna, welcome...I know you aren't looking forward to tamoxifen....I was scared stiff! but I am daily giving it an OK in my life....I think as long as my menstrual cycles and uterus hold up and my liver fucntions do well, that I can take the pill....It is a day by day thing for me...you do have a story for april fools...How are you doing from rads?
well all, I was wondering how many of you have insomnia....I'm not allowed benadryl, the melatonin doesn't work...but do any of you take a little ounce or two of wine at bedtime to help you sleep....I have been taking about 1-2 ounces of blackberry wine in the evening...that is the only kind in the frig...my friend is a wine maker and told me it was good for tummy upsets...so the other night I had a little indigestion, and took some of the blackberry wine, it cured the tummy ache and an added bonus I slept better....but I read on Diana Diar's website that red wines were ok in moderation, even while taking tamoxifen.
http://www.cancerrd.com/FAQs/FAQ104.htm
but if any of you have other advice on sleeping better let me know.....speaking of sleep...I'd better be finding it now!
good night to all my tamoxipals...Harley, haven't seen you post lately....hope you are doing well!
hugs
Amber
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Harley - Thinking of you. Hope you endometrium biopsy goes well. My prayers are with you.
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Thanks to you all for the Wahoo's. I still wish it wasn't such a drama -- my daughter provides enough of that! I had my rad tattoos lasered yesterday to begin to get rid of them. I don't need any reminders. In a way, it's an "in your face" to my rad onc -- who didn't tell me that I could have temp markings. Empowering a little.
Basha,
You are my inspiration, with your strength and humor. Spit at the rain -- that comes under the category of "if you can't beat 'em, join 'em". Think of what it's doing for your garden?!?!
Lynn,
Safe travels back to Japan. I'll be keeping my fingers crossed for your sis.
Murph,
Let us know about your results too. I'll be looking for them.
Donna,
Welcome! Wish we didn't have to meet this way but you've found a great group.
Amber,
As far as insomnia goes -- I don't know what's insomnia and what is just nerves! Some nights are better than others. Naps are my secret weapons, if I have time. Although, when I've done yard work or something else strenuous, that does help.
Ok, pals, I have a question. At this point, I'm convinced that I'm in tamoxipause. After 4 or 5 weeks of no hot flushes, they seem to be coming back. I had several last night while watching the Olympics. Not to mention the cramps I seem to get every 2 weeks for a week. Is anyone else having s/e's again that went away? This is crazy. Let me know what you think.
So have a great day! Can you believe Michael Phelps? And do you think all those Chinese gymnasts are at least 16 years old?
Hugs to all,
Deb
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Hi everyone,
Harley - how are you doing? How did your biopsy go? Thinking about you dear.
I've read all the posts to catch up (yesterday) and now I've got a quick minute to post and wouldn't you know it, I cannot seem to remember much of what I read yesterday, so my apologies for being somewhat generic in my post.
Deb - I've got cramps almost daily. Some days worse than others. It's like I have a band that goes around my low back/pelvic area that is just really crampy and sore - all the time. I'm just learning to live with it. At least for the next two months until I see my Onc again. I'm biting this off 3 months at a time. Congrats on the mammo too.
I have my first post-rads mammo (6 months) next week. Not too anxious about it.
Gotta run everyone - oh, and Michael Phelps is pretty amazing. I'm really enjoying watching the olympics.
-B
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Hey ladies. Just had my 2 year check with my doctor and she'd like me to start Tamoxifen. She apologized for forgetting to have the talk with me about it before. Anyway, I'm 31, diagnosed with dcis 2 years ago June. Got everything out with a mastectomy and everything has looked good since.
I'm nervous about the side effects. Weight gain and depression are 2 things I've really struggled with in the past. And the uterine cancer thing is freaking out my husband.
Any words of wisdom??
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Hi all. It took forever to read through all the posts since I've been gone - I had responses for many of you, but now I can't remember any of them! My mind is still full of holes, don't know if it will ever get better. Maui was wonderful - my family went through 6 bottles of SPF 70 and my son and husband still burned, my daughter and I still got a tan. Just finished all the laundry and now feel like we never left.
Had my first mammogram since my dx on Monday. They could only do the left side, as they felt it was too soon after rads to do the right one. There is some discussion as to whether I will ever be able to mammo that side, because it is so small and hard as a rock. There is no way on earth it could possibly be pulled away from my chest and squished. They mentioned MRI as an option, but will that work on such a small breast? Sometimes I wish I had gone with the mastectomy instead of the lumpectomy.
To you new riders on the Tamoxi-train... we were all afraid too. After chemo, surgery, and radiation, it scared me more than everything else had and I didn't want to do it, but I promised my husband that I would give it a try for a period of three months. I know that everyone is different and that a lot of you have had some terrible side effects, but I am happy to report that I have had zero problems. In fact, I love it! Since starting Tamoxifen, I have my sex life back! Mostly because the only side effect I have had is a little discharge - meaning that the vaginal dryness that had plagued me since I started chemo is gone. Soooo, I am sticking with this. Of course, my onc wants to switch me to Arimidex as soon as it is confirmed that I am definitely in menopause, which we'll know in a few months (one year without a period - the blood test was inconclusive). Anyway, I'll freak out about that when the time comes.
PS Totally enjoying the Olympics. Go USA! I think Michael Phelps is adorable - he reminds me of a taller version of son.
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noelleon and Barbie,
Thanks for thinking of me. I didn't have just the endometrial biopsy. My dr. decided to do a D & C with hysteroscopy... they put a catheter with a camera inside my vagina, and I guess he was able to see more, to know what to take out. He got a few polyps, I think that is what the nurse said.
Anyway, I have been feeling kind of crampy on and off. Yesterday, I slept most of the day. My SIL came to visit for a few days, so today I had to drive to the Mall and we went shopping. I was ok til I got home, and then I started feeling crampy again. We went out to dinner and I just got home, and wouldn't you know it, I'm bleeding again. YICK! The paperwork said that I may bleed for 7 days and be crampy... YUCK!
I am supposed to go back to see this dr. in THREE weeks, I think, according to the nurse, but the release paperwork said to return, as scheduled... WTH?? He NEVER scheduled me for an appt. to follow up!
Thanks!!
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Munchy - I had the same memory problem you had after reading all the posts! Hilarious.
Harley - I hope the cramps settle down for you soon and the bleeding stops as well. Give the doc a call and schedule the appt so that you can get in for sure. some of those docs schedule so many weeks out - make sure you tell them that the nurse indicated you needed to return within 3 weeks and make sure you get that appointment!
Salli - I've taken the same philosophy as Munchy - I commit to tamox 3 months at a time. I haven't had weight gain, I've had some other problems (well documented through this thread), but I'm learning to cope. 5 years is too lofty of a goal for me, smaller 3 month chuncks is much more doable. good luck, and check in here often.
Virginia, has Guitar Hero sucked you in again? Do you need an intervention? You haven't posted in a while...
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Hey ladies, my train ride is getting a little bumpy here, soooooo I have a couple of questinos. I'm a little anemic so onc said take Slow FE for iron, because of constipation (and I was before so now it's worse) I have to take stool softener. THAT I can deal with. Other bowel movement issues but that's TMI. But now I have pain/pressure on the upper right side of my abdomen under my rib cage. CT scan (three months ago) said possible gall stones. But why would it start to bother me now!!!??? Could the tamox be the culprit? Any and all opinions welcome!
Gentle Hugs,
Trish
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Umm, some are having a tough time of it. I hope the weekend is better if you are experiencing discomfort, cramping, and other ailments.
Prayrv - I'm really big into eating salad every day ... I have found eating 5 fruits/veggies daily makes me feel good and helps with your issue.
I will start on my 3rd bottle of Tamaxofin tonight. So far, minimal side effects. The most notable are the hot flashes. They definitely aren't the same intensity as when I started, so I'm ok.
I received the best news possible on Wednesday from onc. The BRCA testing came back NEGATIVE. I was so happy and so relieved. My 19 year old daughter went with me for moral support and we both had tears in our eyes when we got the news ... and we did a victory dance after the doc left the office ! LOL!!!! Called my sister to let her know and she was so happy, too. They would not test her as she didn't meet the criteria (our mom passed from OC in 1996 at 58). So, I feel really good about that news. My daughter and I are having a mom-daughter day tomorrow to further celebrate - movies, lunch, and back to college shopping.
I did ask onc about the blood test for checking on how I metabolize the Tamaxofin. She said she didn't do it. One reason she gave is that the max amount of tamaxofin she would precribe is 20 mg/day. She also emphasized that side effects are minimal for young women, those who are in good health, and who exercise and eat right. I had also asked her about taking a baby aspirin but she said that wouldn't affect the type of blood clot that Tamaxofin causes. And she emphasized the very small % of women that end up with blood clots. She also said after my next mammo in December, I will go on annual timing forever!
Munchy - My rad onc said that MRIs for small breasted women is not the best diagnostic tool. I am also small breasted and she said the digitial mammos would be good for me.
I hope everyone has a great weekend and feel good. Hang in there everyone!
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Murph,
Congrats on the negative result! Mine was negative too and I know the relief that you are feeling. I had the cramping when I started tamox, but this is new and in my upper right abdomen (gallbladder/liver area) and it's more of pressure and a hardness. I am on my 10 month of tamox and now hardly any se's (knock wood!) I am trying to improve my diet for the bowel issues (oh man - way too much TMI!) Have a great weekend and congrats again on the test results!
Trish
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Good morning, fellow passengers--
I'm back in Japan after a very loooooooong trip, but it wasn't bad at all. I was able to use my miles to upgrade to business class for the long leg from Chicago to Tokyo, so that made things so much better. I'm still adjusting to the August heat and humidity...yuck. You should see my hair--I've been growing out a really short cut and my layers are way too long--getting a new 'do on Thurs.--and in the meantime I'm just trying to keep my fine, limp hair out of my face.
Murf and Trish, so glad you both got negative results on BRCA!! That must be such a relief. Harley, hope you're feeling better after your procedure; it's been a long haul with this thing. Basha, how are you feeling these days?
I just talked to my sister on the phone...she's going to have a needle biopsy of what we hope and pray is a complex cyst. The breast surgeon said she didn't want to be sitting w/ her this time next year saying "if only we hadn't waited on the biopsy." I agree--better to know for sure now. Please say a prayer/send good karma/whatever you're comfortable with.
Can't remember if I mentioned before that my internist prescribed a strong anti-inflammatory for my hip pain of three years that I thought was sciatica and then arthritis. He thinks I have bursitis instead. The drug was waiting for me when I got back, and after two doses I can't believe how much better I feel! I'm so excited that my daily limp (and pain) might be a thing of the past!
Hope everybody's having a great weekend. I spent yesterday on the sofa watching Olympic diving, basketball, swimming, track and field, etc. Go USA!
Lynn
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Lynn,
Glad the anti inflammatory drug worked for your bursitis. I have a herniated disc, and back in March when I was having such pain, and even sciatica, I had been worried, but I took Ibuprofen and it seemed to help with the pain.I am still having light spotting on and off, and pain, but when I take the pain med. it 'seems' to help, even if it makes me feel dizzy.
I called the gyn onc. The nurse, Melinda answered the phone when I called. She remembered me, and she told me that she would get in touch with the dr. and call me back. When she called, she gave me an appt. to return on Sept. 5th, and she told me that the pathology was benign. I was so glad to hear that!!
So now I am not as worried about the bleeding and cramping. I guess it will stop before too long.
Hope everyone has a good weekend.
Harley
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Harley, so so happy! benign is excellent....I was worried for you.
Lynn, what is the name of that antiinflammatory? you have such a good doctor...I know it must be great without the pain.
Murph, great news! I have a 16 yr old daughter and when I heard the negative news results, I felt as you did, especially for out girls.
Trish, I too am anemic, the iron can cause the constipation, coffee and ground flaxseed seem to help me, though I don't eat the flax daily, but at least some weekly. I wonder about the tamox and the gal stones...it is something to research, If I find out something I'll post, if you or anyone find out let us all know.
I go back to the med onc for blood work on the anemic issue Monday...I am feeling so much better as far as the energy goes. though the bad boob swells and is painful at times, and my underarm had pain a few weeks ago with lumpiness or swollen lymph nodes....I still had lymph nodes that went through radiation, so I figure it is those defense agents reacting to the power of radiation...but I really have no idea...but the pain is gone now and the lumpiness isn't that noticible, so who knows.
Barbie, I'm with you on the 3 months at a time, I am going to really look at the liver blood work, I told my mom and sister that if my liver enzymes go up, I will probably give up tamoxifen.
Hey that Phelps guy is something else, and what about the basketball, my son is a big Duke fan and we go to some of the home Duke games, and watch the coaching of Coach K. the boys are good!
Salli, It is scary...It is hard to believe that your doctor waits til 2 years later to mention tamoxifen, 2 years of cancer free, having to deal with this tamoxifen ? I would be tempted to not try it myself, I was tempted to not try it even though I had invasive ductal...but I am dealing with it fine, and have since heard of other ladies in my area who made it through the 5 year mark and beyond without recurrences...so here I go, one pill at a time.
Hugs to everyone I didn't mention. I have got to go.
Hugs
amber
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Lynn,
Glad to know you made it back safely. Even better that you're feeling less pain.
Harley,
I feel for you. I had 2 D&C's way back when -- pregnancies that my body wouldn't give up even though there wasn't a heartbeat. Another time, another issue. But each time, I had horrible cramps and bleeding. I was put on methegrine (not sure of spelling). The normal course is 3 days but I had to be on it for 7. And complete bed rest for the first 3 to 5 days. So be kind to your body and take it easy for a few days.
Murph,
Wahoo on your results! Give your daughter a hug for me too.
Trish,
Any thought that the iron may be aggravating your gall stones? May want to ask about that. But I'll echo Murph -- lots of fruit take care of my issues. And right now, there lots of great stuff out there. For me, it's pineapple and raspberries. The pineapples have been incredible this year.
And one Hip-Hip-Hooray for MIchael Phelps and Dara Torres. They are AWESOME!
Hugs to all,
Deb
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Amber,
Thanks!
Deb,
I'm so very sorry to hear about your miscarriages! It must have been just awful for you. Just the loss of your baby was enough, and then you had to suffer so much pain.
Harley
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Harley,
I'm ok now, really! I have a beautiful 14 year old daughter and I'm way past those sorrows. (BTW, it turned out to be a genentic defect from my hubby -- only was an issue with boys. So we were meant to have a girl). I just wanted you to know that I know how you are feeling. And just to be clear -- it SUCKS! I just wanted you to take care of you. No shopping -- unless it's a quick shoe run -- right, Barbie?!?!? Nothing strenuous.
Deb
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Basha,
How about that Women's Eight!!?!?!? Gold!!!!
Deb
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Deb
Oh, I still feel for your loss. I could NEVER have children, so I think that making me go through all this crap for a bunch of polyps is really ridiculous!! I want this idiot dr. to just do a complete hysterectomy, so I don't have to worry about developing cancer in these old, useless parts.
Thanks! I think this surgery was worse than any of the others....
Harley
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Deb, Yeah!!! I had gone up to bed to read and I heard my husband shouting "Rowing" over and over so I skedaddled back down and saw it. HOW SWEET!I've still been a bit blue but painting and rowing, so I trust I am okay.Wish we could all sit at my outdoor terrace and drink iced coffee together.Love you gals!!! Basha0
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Hi Girlies--- I feel like I haven't posted in such a long time...and now so much time has gone by that I won't be able to give a shout out to everyone.
Barbie- LOL, you comment RE Guitar Hero sucking me in made me laugh out loud... I actually haven't played in a really long time... Been watching TONS of Olympics...they have been great. And I love watching on the DVR so I can FF through the parts that don't interest me...
My Dad has been acting really confused lately...heartbreaking as usual.
My sister had a mammo last week and they want her to come back for "more pictures." So, now we hold our breath... She's not in major panic mode yet...but with such the strong history of BC in the family, it's hard not to worry. Not only do we worry about ourselves, but our female relatives...
And please forgive me...I don't remember who had the BRCA test, but I know it came back negative! WHOO HOO!!! Mine came back negative too, although I'm still convinced that there is some BRCA gene out there they haven't yet discovered that i have...
Dokie girls...been suffering the blues myself with Dad and all. Went from the BC to Dad being really sick... Just want to pull the covers over my head to forget about everything for a little while.
Hugs to all...
Virginia
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Virginia
Sorry to hear about your Dad... I know that it hurts so much when someone we love seems to be disappearing before our eyes.
I'm sending HUGS and prayers your way!!
Even though I had good news from this latest test, the post surgery pain got worse daily and I also just want to hide under the covers, or even under the bed with my cat, Spike!
Harley
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Virginia,
I'll be keeping only good thoughts for your sister. Keep us posted. Give your dad a hug from me. He doesn't know who I am but so what! Tell him it's from a distant friend. At least in his confusion, he doesn't know what's going on. In a way, that can be a blessing for him -- not you, I know. I'm thinking of you and sending good karma your way.
Basha,
I'll join you on the terrace for tea. That sounds wonderful.
Well, ladies, it's Monday. I'm at my job (which still doesn't want me) and wishing I was somewhere else. My daughter went back to school today -- a freshman!!! -- and my hubby is in St. Louis then Baltimore this week. I have about a dozen people coming over on Saturday for couples bunko and my one year anniv. is next week. I'm a little overwhelmed.
Hope you're having a good day.
Deb
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Hello Ladies,
Congratulations to Murph, Trish and Harley for all their "negative news".
Virginia - so sorry that your Dad is struggling. It just sucks when one life changing event comes after another.
To all the ladies with the blues.... I too have been down for the last week or so. Here is my theory: All positive energy has been sucked into the water cube in Beijing, specifically for the USA swimmers! Now that swim is over, there should be a collective relase of all that positive energy back into the atmosphere and available to us. OK, so I don't really believe this, but I don't want to believe that the depression monster is settling back in too. It might be that I have a mammo tomorrow and I don't have very good feelings about it. My gut instinct is to tell me to "prepare". Of course, preparation is never a bad thing.... Anyhow, this is my first mammo post radiation and I have a nagging feeling about this one. PLUS, i've been so darned fatigued for the last 4 or 5 days. Maybe this is the fault of Michael Phelps too. Sucking all that positive energy...
Deb - you know that I prescribe shoe buying for all ailments. Perhaps I should go shopping tonight....
Basha - I'll join you and Deb on the terrace as well. We can have a good old fashioned gab fest.
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