Bottle o Tamoxifen
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Hi Rickster. I am so sorry about your hip pain. I understand how frustrating and debilitating this can be. I would like to contribute to your dilemma about Tamox vs an AI. I think your onc is very smart and she considered your existing "conditions." I am very similar to you in that I have no history of bc in the family, I am lean, eat right, do physical activity every day, etc., etc. I did, however, do HRT to protect bones, etc. (or so we thought). You can see my dx at the end of my post. I did do lumpectomy, rads and am now on Arimidex which is incredibly hard on me because I do have arthritis and osteopenia. Both my med onc and my rad onc said that they think I should switch to Tamox. They both said it is a very good drug and the percentage of benefit between the two is very low. IN fact, someone on one of the threads said that it is only about a 1% difference in benefit. The other factor that is important to me is that my rad onc's wife has bc and he said that Tamox is a very good drug. He is also a very strict scientist so I value opinion. You might want to discuss this information again with your onc so that it can give you a little peace of mind. The hardest thing after primary care is peace of mind. I am still struggling to find that.
Hope this helps a little. e
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Makraz, I am not 100% clear as to why start the Tamox and only take it for a month before switching to Lupron/AI. She did mention that starting things spaced out would allow us to know which drug may be the culprit behind any side effects. But that still doesn't really answer the question. I assume it's because the Tamox sort of preps you for the full-blown Lupron that will shut you down immediately? Good question, I'll have to ask that one when I go in next week. So far no side effects...
I'm going to Dana Farber.
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Good morning and happy Friday to all.
Virginia - sorry to hear about your friend. So far, this year hasn't been a good one for alot of us. I have to believe things will change!!!!
Barbie - It's alot to process and you need to take the time to figure it all out. I had the BRCA testing back in July. I could not deal with it prior to then, had to wait until I was through with the daily medical stuff. My mom, who was a health nut (low fat diet, exercise, etc.), was 58 when she was dx with stage IV ovarian. I've been checked since I was 32 (when mom was dx) and went on birth control pills as it helps reduce the ovarian cancer risk. I often wonder if that is why I ended up with DCIS. My mom's onc recommended I have my ovaries out, but I was way too young to consider that and didn't feel comfortable making that decision at 32. My mom was dx'd in 1984, way before the genetic testing was readily available.
The test came back negative for me for BRCA1/2, but I feel like Virginia, they haven't discovered all the genes that impact this and prostate cancer (I've read about the increased risk for men whose moms have had BC.) I do have a friend whose mom passed from BC when we were kids, and he was recently dx with prostate cancer. Having said that, the testing did provide some piece of mind for me and my daughter. As a 20 year old, it would have been alot for her to process if I came back positive. I had made the decision if I was positive, I was having my ovaries out, without hestitation. But, everyone's decision is individual and has to "feel right" for them. (On a positive note, my daughter just emailed me and told me she's one of the Team Captains for Providence College's Relay for Life event in April - name of her team is "Fighting Back").
My friend who was recently diagnosed with Stage II was also recommended to have the genetic testing. She has a huge family and only one other relative (aunt) has been dx with bc. So, it's almost a standard procedure. She is going to wait on having the testing, and handle her immediate medical stuff and then have it done. My sister (who is a physician assistant) went to Yale and met with a genetic counselor but they determined she would not have the test her until my results came back. Since my results were negative, my sister did not have the testing.
As far as Tamaxofin's side effects, other than the cyst that recently appeared and the hot flashes, I do experience some discomfort in my left knee - it seems to kick up more when I'm not able to do my daily walks outside and I use a stationary bike instead. After sitting for a while, I end up limping for a bit until it works out. I walked outside for the past 2 days and it didn't seem to act up as much.
I don't know how I would feel if I had constant pain, day in day out. It definitely would wear on my emotions and impact my daily life. Hang in there, Barbie, and good luck with your decision.
Have a good weekend everyone, we deserve it!!!!!!!!!!!!!!!!!
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Thanks for your input and information, Elizabeth. If the Tamox will provide me with 'close' to the same protection of AI's without the painful side effects, I think it will be worth it and I can be comfortable with the decision. After spending so much time unable to do anything, the thought of being relatively pain free is very high on my list of priorities. It is SO hard to break the cycle of getting out and being active when you have felt like *&^^* for so long. The motivation that comes from knowing that activity counteracts pain is very compelling, too. Thanks again, Rickster
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Virgina, Murph and Makraz - thank you so much for your hugs and words of wisdom. I've given myself a little bit of room over the last couple of days to just sit with the information. I think the main reason I haven't yet tested is because I just have this feeling that it is probably an unknown mutation with a familial link. I don't have kids, so there wasn't the urgency to find out for them, and my siblings have been somewhat lukewarm. I will probably get tested, but I just have to ramp up my emotional support first. I'm in NO hurry to get to menopause - so for the short term, I'm staying on the tamox. I think talking further with my onc will also help...
Virginia, so sorry about your boss. Indeed life is precious. I thought you might be spending your time over on FB. I'm just so reluctant to dive in!
Gotta get back to work. Thanks ladies... Barbie
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Hugs Murph...
Justsaying...my friend who got the menopause shots was on Tamoxifen for 5 years...she just actually stopped the tamox...and the menopause shots...guess they just do it for the 5 years? sometimes i feel so stooooopid about this stuff and i should educate myself more....
elisabeth- when i was initially going to sloan kettering, my onc nurse told me that tamoxifen was a miracle drug and should be in drinking water....... now, i'm one of the lucky ones who has no SE's (is it really working???? i hope so...)
And I love you gals.......see how bad we ALL are??? Those of us who test negative for BRCA are CONVINCED we have an undiscovered gene.... OYE!!
Just back from the funeral mass. It was actually beautiful and a TON of people came... She was a single lady and VERY dedicated to her job... Had 185 people reporting to her...(including indirect reports). She has left a HUGE void here at the office...
Love to all,
Virginia
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Another passenger hopping aboard the Tamoxi Train...
I'm going to start my first dose of Tamoxifen (20mg) tonight to head off a few of the known side effects. Read in other threads that taking Tamoxifen at night reduces the nausea and fatigue factor (in fact may help w/ sleeping).
I finished chemo #6 of Taxotere / Cytoxan on 10/29/08. After chemo #1 on 07/10/08, my period came on time but it was unusually heavy the first few days and lasted 10 days, 7 day break, and then a very light period of 4-5 days. Have been in chemo-pause ever since. Had maybe half a dozen definite chemo-flashes in cool settings; had some other possible chemo-flashes but w/ temps in the 90s and 100s back in the summer and fall here in Southern California, it was hard to tell. Also dealing w/ neuropathy in all fingers except my pinkies. I am taking 600mg gabapentin (Neruontin) daily for it and one of its positive side effects is to reduce hot flashes.
30 rounds of RADS completed on 01/14/09. Developed bilateral shoulder pain about a week into treatment. More severe on the unaffected side than the affected side. Perhaps I'm overcompensating? Was taking 600mg ibuprofen daily for the pain but have stopped since I'm also supposed to start taking Boniva--I've been osteopenic for quite a few years now--and NSAIDs are contraindicated. Going to wait until after my next DEXA bone mineral density scan later this month before starting the Boniva.
I'll be trying acupuncture to help w/ the shoulder pain and also w/ the neuropathy.
Also have a persistent hemorhagic ovarian cyst that was discovered shortly after starting chemo. Will be interesting to see what affect Tamoxifen has on my pre-existing conditions.
Just found out about 2D6 testing from elsewhere on this site and will ask my onco at next visit.
Tami
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Rickster, I have just started Tamox,last night was the first night!So no SE but a funny taste in my mouth this am.I am 63 and post meno.There was no discussion of any other med but Tamox. I asked my onc about the tamox test and he read to me from some cancer info that it is not standard of care at this moment. He says the test is not commercially available yet so I would have to pay. I just let it go for now.Sorry to hear of your problem with hip and back pain. You have enough to deal with without this!
Hugs
Jeanie
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Hi Gals,
I have been on FB too, but also sick with another round of flu. My son had to be hospitalized last week. He's already back in college. Jeesh.
Could life please be boring???xxxxxxBasha
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Ashaby,
I can't believe the sickness that has been going around. My family has been healthly, not even the sniffles! I think I just jinxed myself. Glad your son is back in school, that must mean he is feeling better. I am in MA and can finally see grasS! Can you see any yet? I hope you feel better soo
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Hello girls. It's been so long since I've posted, it took over an hour to read and catch up. Of course by now (5 minutes later), I can't remember any of it. It's so good to see all the familiar names... I've missed you all. Welcome to all the newcomers.
My husband and I have been traveling a lot - we are really cherishing life a lot more now, and trying not to procrastinate about the things we want to do, visit or accomplish.
Had a big scare, though. Around Thanksgiving, I found another lump - this time in the other breast. I had to cancel a January vacation so I could have surgery. The docs just wanted to remove the thing surgically, since it was too small to do a needle biopsy. Had the surgery mid-January, and thank God, it was benign.
My daughter came home. She just couldn't stick it out. I was very dissapointed. She threw away such a great opportunity - one that I never had. Oh well, she's going to the local community college with a plan of going back to a four-year college as a junior.
Still battling my weight. I am about 5 lbs. heavier than I used to be. I know that it would be worse than that, but I really watch what I eat and exercise every day - running and weight training. I am becoming more "apple shaped", with the extra weight around my middle - but that's probably because I am now officially menopausal. It's been well over a year since I had a period. My lymphedema is much better, but maybe that's because the hot weather is long gone. Hot flashes are still terrible, but the night sweats have gotten somewhat better.
Joan - your comment about it being easier for your mom because of your experience really struck home. My mother had breast cancer exactly one year before I did, and I felt that it was much easier for me because I felt that I had already been through it, in a way, through her. So glad things came out OK for her.
Barbie - Such a difficult decision. I can't imagine living with all that pain, but your hesitation is understandable. Having a child in your 40's is such a risk though... a good friend of mine did so and her son is severely handicapped.
Somebody asked how long the side effects took to show up. For me, things were fine at first, but the weight gain started about five weeks later.
Hope everyone gets over their colds and/or flu. Hugs to all.
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Hello Ladies, just wanted to clear up a previous post. I must have misunderstood my Dr. when( I thought) he said he did not test for ER receptors I have the report that says I am ER+. I have been taking tamox for the last 4 days and so far do good. I guess I should always take someone with me.
Jeanie
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Makraz,
I was in MA last weekend and it was great to see the grass. Still lots of snow here and 6 more inches today. Too much colds and confirmed cases of flu going around. Hope I don't jinx myself. I am trying to avoid exposure as I am having surgery soon for hysterectomy.
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Hi Nicole,
Crazy weather here in MA. Complete snow cover last week, grass within the last few days, snow last night (only 3 inches) and 50 degrees today! The snow is gone again! Best of luck with your hysterectomy. Stay healthy!
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Makraz - I still have snow in my yard and I'm in MA. Send your sunshine to the South Shore, will ya??? I'm getting tired of the snow, it's so dirty.
Munchy - I have a book that might help with your weight issue. I bought it years ago and swear by it. It's entitled: "Escape Your Shape - How to Work out Smarter, Not Harder", by Edward J. Jackowski, Ph.D. The book breaks down workouts by body type - I am a "spoon", meaning that if I gain weight, it goes to my butt and hips. After reading this book, I modified my workout and was very happy with the results. I have shared my book with alot friends. The author was on Larry King Live one night and his workout routine just makes sense, as it is based on your body's natural shape.
Sorry to hear about your daughter, but it sounds like she has a good plan. College is not for everyone when they first get out of high school, and it's a difficult transition for alot of kids. We made frequent trips to visit my daughter the first year - just about every other week either me or my husband would visit her, or she would come home. I'm taking vacation time today and we're going to Providence to take her out to lunch. Its school vacation week here, so my son will also go. We feel very fortunate that she is only one hour away. I'm also very excited to only have 2 more college payments .... the costs keep going up and up and up! I don't even want to think about how much it will cost by the time my 15 year old is ready to go. So, you have to be happy that she wasn't wasting your money at a school when she really didn't want to be there?!
We are sending our daughter to FL during her college Spring Break to spend time with my MIL. Since my BIL's death, it has been a very difficult time for the family. My MIL lives in Bradenton, FL during the winter, and the Red Sox are playing in Brandenton (vs Pittsburgh Pirates), so my daughter already purchased two tickets for them to go!! It will be a good visit for my MIL, and will give her something to look forward to.
Enjoy the weekend everyone!
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Munchy -- my son (now 27) also left college before he finished. He is working now but feels like he missed out on something, he is just not sure what. He was going for music which is so darn competitive that he just thought he could not handle that part. It is tough, but I also agree with others -- community college is a great place to figure out what you want to do. inexpensive too.
anyway, I have just finished my first month on tamox -- finding hot flashes and insomnia to be the most annoying, also I have had to add prunes to my diet !! what's that about? I don't want to resort to laxatives, and I am fighting weight gain (I am pretty small so even a little puts me in a bigger size, yuk). My 88 year old mother broke her hip 2 weeks ago so we are going through the rehab and nursing home issues now, it is so sad -- she was the faster walker I ever knew and also had colon cancr 9 years ago which never recurred. It kinda put my cancer on the back burner for a bit. I am the family member who makes all the practical decisions (out of 5 siblings) so just trying to keep it together through dealing with her financial records, burial funds, care plans, and mostly just trying to enjoy some time with her. Luckily I am near her facility.
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murphmort,
Sending some sunshine your way to help melt the snow. I was in Duxbury for a few days last week visiting my MIL, yes, they have more snow than I do. It's usually the other way around!
The book you suggested sounds interesting. I think I'll pick it up. I fear I am a "spoon" too!
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Hi All - Welcome to the "new riders". Sorry to hear of the sadness and sickness - alot of that going on in VA too. Have a friend who is active like me and she found out she has liver cancer...so far the chemo is shrinking the tumors....My 79 year old Mom will have open heart surgery on Tues to replace her aortic valve....
So I have been off the train for 3.5 weeks and I am only waking up once a night instead of every two hours and joints feel better.....I think on the 11th I may have to make a quality of life decision vs. a protection from recurrence decision...or maybe my great onc will think of something else. My head feels so much clearer now that I am sleeping.
My port came out Wednesday, and this coming Wed is the year anniversary of my first chemo.....other than the tamox issues, my right arm still feels weird and is weak, even though I exercise and it is my dominant one. I wear the sleeve practically everyday since I can cover it with sleeves now. I try to stay positive and look at each day as a gift, but sometimes I still get mad over the whole thing!
We have Relay at our school and my Cross Country team has a team. I am raising my money by running the Shamrock 1/2 marathon....did it last year between chemo 1 and 2 and raised almost 1,000. Took all the people on my taxotere group with me as I had all their names in my pocket. Will take you all along with me Mar 22nd. Glad I can still run...but thinking of switching to biking after this race...
Have a wonderful weekend. We are celebrating Vday this weekend by going to the rodeo...I have never been...should be fun.
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I just thought I would jump onboard. I took my first Tamoxifen last night. One day down - five years to go!! In a month I start Lupron as well - that I am scared about. Any other Lupron'ers out there with advice - perhaos not too scary advice to begin.
I am 33 and will be going into menopause. I just threw myself a menopause party which really helped to feel the support of my friends, but this whole thing is just bizarre.
Jodie
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Hi, Travelers56, Sorry to hear about your Mom. I am a nurse who worked in Nursing homes for 30 yrs. Will she be in just for rehab? It does seem there is usually one sibling who does it all!! Do your siblings live near you? The problem often is getting siblings to agree on things so sometimes it is better to be the only sibling who is in charge.
Where are you in your cancer TX?
I had 2 lumpectomys and 7 weeks of rads and now just started Tamox last week. So far only a funny taste in my mouth at times.Hope I am spared the other SE!!
Thinking of you and your Mom
Jeanie
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She is in for rehab, but I am wondering if she will be able to go back to assisted living. Still not ambulating on her own (walker or wheelchair), it has only been 2 1/2 weeks since the surgery so we'll see. I just left there, she was very confused, and her roommate said she was up in the night out of bed with nothing on. Yikes!!! I have 4 siblings, but most of the stuff is mine as I am the only one that understands all the insurance stuff, I live close, and all that. My one sister is close too and helps a lot. We all do what we can, and don't argue. I feel so bad for her. The Tamox is giving me some hot flashes/ insomnia which is not helping as I am running ragged. No other SEs though as of yet, knock on wood! I had a lumpectomy and re-exc in Sept. and 15 rounds of rads (IMRT) in November - no bad side effects at all, i kept up most of my routine, except had to use lighter weights in a gym class.
Jeanie, I feel so bad leaving her in a nursing home, but I know I could not care for her at home. I give al the credit in the world for those that work there.
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Hello to all of my old friends and to the newer riders!
It's been a while since I had a chance to get on here -- months actually -- so I apologize for not keeping in touch. If you'll remember, I started working and the system there won't allow for posting -- high level of security there. To all the 'older riders', I've missed having you standing with me but you've NOT been out of my thoughts.
Virginia, Basha, Murph, Munch -- I haven't been able to read all the posts so I hope things are going well for you. The s/e's have definitely lightened up for me -- so hang in there to the newer riders. I have had issues with cramps since November and to make a long story short, after u/s and endometrial biopsy I think a D&C is in my near future. GYN wants to get the thickened lining out and everything cleaned up. I'll keep you posted.
Not too much time right now -- you know me, I have to bake a pecan pie for our dinner group tonight. But I didn't want any more time to get by without letting you all know that I was thinking about ya.
I'll try to get caught up and post more this weekend. Take care to all!!
Deb
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Just popping in-line to say hello and wish everyone a S/E free weekend. Things are reasonably good for me. Big news is that I finally got around to getting a haircut - first one since ending chemo at the end of April - yes, it was about time. Still have my extra curls. Was always curly yet hair came back in even more curly than before. Hope all are well.
Joan
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Hi everyone,
I'm back! I returned from a 12 day Caribbean cruise last week, on Thursday, and I just finished doing about 10,000 loads of laundry.... WHEW!
I hope everyone is doing well.
I have been having problems again (I think) from the Tamoxifen. When I exercise, I am getting this clear discharge.... and I feel so bloated, and I feel like I have to urinate ALL THE TIME! It is sort of the way I felt last summer, when I had the urinary polyps and had to have the D & C. Needless to say, I am NOT HAPPY about this at all. I will try to hang in there til I can get in to see my pcp dr., so I can get the necessary referrals to see ALL my drs. again.
Everyone who is having a rough ride on the Tamoxi train, hold on tight.... it's a bumpy ride at times!!
Hugs to all,
Harley
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Morning girls. It's good to hear from all of you.
Harley, glad you got away on your cruise, you deserve it! I would give you doctor a call if you are experiencing these symptoms - why wait?
I have my medical oncologist appt on Thursday. I have my follow-up ultrasound on Monday, 3/9, to determine if the ovarian cyst is still there ... I'm hopeful the whole thing just goes away. I don't want to deal with it! I'm not sure I want to know what they do about them!
Deb - save me a slice of the pecan pie, will you! Sounds good ... I have not been too good about my diet lately. Once I get weighed in on Thursday, I'm sure that will shock me into getting back on track! It's hard when you have a teenage son that requires lots of food - especially when he has his buddies over, I always bake for them!
We got more snow in New England yesterday, just when I could see the grass we get another 10". Urrggghh.
Have a wonderful day everyone.
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Hello to all! I am new to this and I am waiting for my surgery on March 11th. Don't know what meds I'll be on but I think he said tamoxifin and I am not looking forward to it at all. All those side effects scare me to death. I am glad I found this community. It will take me time to find my way around here. Thanks to all you lovely ladies.
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Murph,
I'm having the same issues that you are. I had u/s at the end of December and cysts were found on both ovaries (two on the left) and thickened endometrial lining. I had the biopsy done, which came back clear, but gyn wants me to have another u/s at the end of March to check everything again. Assuming nothing has changed, she said that a D&C will probably be needed just to clean everything out. She did say that she thought the tamoxifen was causing the thickening. Turns out, when they looked at the u/s I had a year earlier (before I started taking the tamox) the cysts were there then! Not sure if they had grown -- I'll find out when I sit down with her on the 24th.
And I understand about all that baking you're doing for your son and his friends. When I was younger, I did some of the baking for my brother and his buddies. I did the chocolate chip cookies, my mom did the pies.
Harley,
Nice to hear from you! Glad you had a good time on your cruise. No doubt you deserve it. The last time I had a chance to look at this board -- months ago -- you were looking for a job. What happened with that?
Welcome to GrannyG! Stick with this crowd -- they are the BEST group of women!!!
We're off to Palm Springs on Wednesday. Boy, do I need a break!! Have had problems recently with my step-daughter. No time, patience or energy to go into it now.
Have a great couple of weeks!!
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Granny - welcome and good luck with surgery...will you be doing chemo also?
Everyone have a great weekend
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Help: vaginal problems & tamoxifen
I went into chemo-pause prior to my 2nd dose of TC. Things have been on the "dry side" after that but not too problematic. Mainly some atrophic vaginitis that my onco said extended into my urethra. Taking cranberry extract twice a day helps the slight irritation. Already had a recent urinalysis to double check that the UTI I had after my mastectomy definitely cleared up.
Started tamoxifen on 2/15/09 and things have been on the "wet side" ever since. Boniva was started at the beginning of Week 3.
Week 1: slight discharge.
Week 2: sudden deluge of vaginal discharge. According to MD, my body would equalize after a bit.
Week 3: discharge still heavy at times but increasing discomfort down below by the end of the week. I started using a very dilute vinegar water to rinse with after going #1 and hopefully head off any problems. Been told to do that pre-BC when it seems I might be developing a yeast infection. Also my RAD ONCO says vinegar water rinse might actually help w/ the discharge.Today, I know for sure all is not quite right down below--very tender and swollen. My body is still out of whack from chemo and anti-hormonal therapy that I'm not sure if this is more atrophic vaginitis or I'm brewing a yeast infection and / or a UTI. Normally, I have no trouble telling the difference. I currently don't itch so much as have a constant low-grade burn. Most of the burning I'm feeling is on the outside vs. the inside especially when going #1. My vulvar tissues could just be raw from the (moist, warm, dark) "swampy" conditions that favor yeast overgrowth. Now even the dilute vinegar water rinse burns. I also noticed a few pinprick specks of blood when very gently patting dry. I could also be at the very early stages of a UTI which I'll know for sure if the burning gets really bad.
It's the weekend and though I'm not comfortable, it's not a life-and-death problem to bother the on call doctor with. This is my first yeast infection or UTI since chemo, rads, and anti-hormonal therapy so not sure what protocol doctors usually prefer. Treat myself w/ home remedies only (vinegar, acidophilus, boric acid powder, etc.) or go ahead and use miconazole (Monistat generic) that I have on hand? I will call in tomorrow but don't know how soon they can get me in.
As you may have already deduced, I have been prone to yeast infections in the past. Is this going to be an ongoing problem for the next 5 years? I read that some ladies on tamoxifen have gotten yeast infections while on tamoxifen. What did your doctor recommend? Or better yet, what worked for you to deal w/ yeast and other vaginal problems?
Thanks,
Tami0 -
Tami, the discharge is not necessarily a sign of anything out of whack....just one of the SE's of Tamoxifen. The specks of blood that you are experiencing may be that the tissue in that area becomes more delicate on Tamoxifen. I needed to change TP brands to something softer. That vinegar rinse may be too much right now.
Try letting the area air dry, at least after bath/shower before getting dressed.
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