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Bottle o Tamoxifen

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Comments

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Still bleeding - that's 2 days now and 6 days after the hysteroscopy and D&C.  Called my GYN this morning and he wants to see me tomorrow.  I really want him to explain why I had nothing for 4 days and then on days 5 & 6 I have cramping and bleeding.  This is all a bunch of crap and I am so sick of it.  The upside is if he has my path report, I can get th results of that and not have to go back on Tues.  Will keep everyone posted and thanks for letting me vent.

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited July 2012

    Tink, I was told to use a compression garment when I fly.  However, my mother had ALND 18 years ago, was never told to use a garment (never had one prescribed for anything!) and she has traveled frequently without it.  She flew to the British Islands a couple weeks ago without one, and has never had any problems.  However, I would probably wear one, even though I have had not problems with LE and don't really expect to, but am SO PARANOID about it that I will do almost ANYTHING to avoid it!!! Now, that being said, I didin't use it when I was trying to exercise... the PT said if it was going to be the factor that determined whether I exercised or not, to just not use it and see how things went, and to pay attention so that if LE occurred we would address it immediately.  But when traveling very far away from the health care professionals who actually KNOW me, I am more likely to take additional precautions.  DH suggested that if & when we ever travel by air again, he would help me put it on in the airport after security if that's what it would take to avoid having to wear it for several hours before the actual flight.  Good luck, and have a great trip!!!!

    Someone on here asked on the last page or this page about tamoxifen making you tired.  I thought it was a factor in my severe fatigue, and am on holiday from it, but have not had improvement in my energy levels.  Have MO appt. on Monday, so we will discuss again.  I continue to have pain & fatigue that I am not sure I can actually blame on the tammi now that I have been off it for a while.  Wondering if it is still just chemo-induced neuropathy.... or something else???  Am a little (OK, a LOT) frustrated with this right now.  I HAVE been able to gain weight since I went off the tammi -  had lost over 30 pounds with BC and treatment, and have been able to gain 10 lbs back, which I couldn't do on tamoxifen.  Now I just want to turn that weight gain into muscle, not belly fat!! Wink

    Hope you all had a good 4th of July. No firworks here - too dry and hot, high risk of fires.

  • schipmom
    schipmom Member Posts: 100
    edited July 2012

    I know how you feel Jo.  Will be praying for a good path report for  you tomorrow.  Hang in there :-)

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Thanks Deb - i usually would not call the doctor but in this case I felt it needed to do it just for my own piece of mind.  I was not trying to get my appt moved up - you know that.  I just want answers.  If the bleeding had started right after the procedure, I wouldn't have thought anything about it.  But with 4 days of nothing and then this???  Why can't I get through one thing without something going wrong?????  I will keep you posted.

  • vacationbound
    vacationbound Member Posts: 37
    edited July 2012

    The Florida cruise's are just as fun! I went in December to the San Juan Port and went island hopping 1st to; St. Thomas, Dominica,Barbados, St. Kitts, St. Lucia, St. Maarteen, if you do this cruise, make sure you spend enough time on San Juan as there is so much to see and cannot be done in 1 day. Enjoy your sun rays and cool waves!!!! (And an occasional refreshement for rehydrating as I'm sure it is so hot right now)!!!

    As far as the bleeding-yes, see the doctor asap! Not to scare you but here is my brief history: Had a total Hysterectomy in May due to the Tamoxifen tearing up my uterus, Oopherectomy was not going to be good enough, the Gyno/Onc said I was a poor metabolizer of Tamoxifen (CYP2D6 Polymorphism) and she said we got everything out in time as it looked a sad mess. (Metaplasia/Dysplasia) so I was on my way towards Uterine Cancer pretty quickly, all while on Tamoxifen! It all took place within a relatively short span of time, 3 1/2 months of being on Tamoxifen.

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012
    vacationbound - I am seeing my GYN this afternoon and going loaded with questions.  My GYN had the nerve to tell me that the huge polyp he took out last week had nothing to do with Tamoxifen.  Sorry, I bet to differ.  I have several articles that say there is such thing as Tamoxifen-induced polyps.  In fact, it does go on to say that women who are being treated with Tamox are at a signficantly higher risk of getting polyps.  Still having some bleeding and cramps this morning.  Not near as much as the last two days but enough to worry me.  He also told me that I could not get cancer in just a year - what the hell does he know?  Not a damn thing is sounds like.
  • vacationbound
    vacationbound Member Posts: 37
    edited July 2012

    Sounds like you need to trade up-you should seek out a Gynocological Oncologist-the regular Gyn's are not experts in the field of Breast Cancer and it's angiogenesis effects, plus they have no clue what Tamoxifen does as they did not prescribe it therefore, they are unknowing of it's SE's other than what they may skim through in a medical journal update....Good Luck with your exam, praying for you Smile

     PS>>>

      I'm not knocking Tamoxifen, it is a good drug for most (wished I could have stayed on it) but I am one of those few that cannot take it and I wanted to inform you folks of some of the symptons to look for. My Gyno/Onc ordered the transvaginal ultrasound and my CA125 marker was slightly elevated-I highly suggest going to a Gyno/Onc if you can-the diagnostics are more thorough, anyways, I would warn anyone that if your having any bleeding while on Tamoxifen to have an examination and to do follow ups as well. Tamoxiifen can turn on you if your not careful. The other sympton I had was the right ovary kept hurting-like a dull ache when your cycle starts, very annoying to say the least as it was an everyday occurence. I believed him at first when my BC Onc said, "that's normal" and "the benefits outweigh the risks" well had I not been in so much dire straits, I probably would have believed him and stayed the course trading breast cancer for uterine cancer!!!! I did have lots of leg cramps I remember but I took Cal, Mag, Pot, and Vit D and they went away. I am still on this regimen as now, with the Arimidex, I have to worry about bone loss so I have also added Strontium to the mix. I will not be taking any Bisphosphonates as they have too many SE's and I have enough problems to deal with. The Bisphosphonates are not necessary if you keep up the bone density with the vitamins and the mineral I listed above. That is how I choose to fight my cancer.Kiss

  • vacationbound
    vacationbound Member Posts: 37
    edited July 2012

    Tinker-When I flew to San Juan in December, it was a long flight with layovers, I took my sleeve with me and wore it but when I got in the Hotel that night, I noticed my feet had swelled, it took two days for the swelling in my feet and ankles to go down, I believe had I not wore my arm sleeve, the same thing would have happened to that extremity.

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited July 2012

    Went to the Medical Oncologist on Monday was officially declared a "NED"  funny he wouldn't say cancer-free just called me a "NED" and said yes your in remission.  He was VERY surprise that I was having such joint pain, told me to continue taking the glucosamine, and that "if you can get over the effects of chemo, stick this out".  Told him I was using Nioxin shampoo and conditioner his response was "that's stuff is great" and asked  about me using my eyebrows and eyelashes again, and again it was you need to just stick with it.  He told me the side effects are very far in range for everybody and each patient needs to find what works for them, but to also check with either him or the pharmacist before I take anything to make sure it doesn't counter-act with the tamoxifen (as it seems so much does). Start seeing him every 3 month and will have a pet scan in October, told me a bone density test was not necessary as Tamoxifen promotes bone health and will start seeing Surgical Oncologist every 6 months. FUN FUN  

  • Sherryc
    Sherryc Member Posts: 4,503
    edited July 2012

    Lezza I take the tamoxifen at night and the effexor in the morning.  I kinda played around with both to find what works best for me.

    Jo I can't believe you are still bleeding.  Glad you went to the gyno this afternoon.  I'm going to a wedding but I'll try to call you,

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Back from the gyn - bleeding is normal and can last up to 2 weeks.  The gyn removed a 3 cm polyp - no wonder I felt bloated - sheesh!  They did have the path report - Benign!!!!!  Yeah! I was not able to see my regular doctor but the one I did see was very thorough and answered all my questions.  He said since this polyp was most likely Tamoxifen induced and having had a D&C last year he would recommend I have a hysterectomy to include ovaries particularly if I was his patient.  He does not see why my doctor would not go along with that.  Sometimes insurance companies won't pay for one unless you have gone through other treatments first.  I don't think I will have a problem. So, good to go for another year.  Will deal with this issue later.  

    No appts for 4 weeks - WooHoo!!!  Next up is my revision on Aug 6th.  I am so looking forward to that as this will be another thing I can get finished and put behind me.

    Hope everyone has a great weekend.

  • vacationbound
    vacationbound Member Posts: 37
    edited July 2012

    Hi Jo-Thank you for sharing; yes, that is good advice the other GYN gave you if and when you decide to go that route. Insurance co's are actually working more towards doing Prophlaytic Hysterctomy's as there are studies proving mets to Uterine and Ovarian Cancer's linked to BC-since most women do not get the BRCA test (most Ins. co. do not pay-out of pocket $3-4K) so more women are falling victim to this unknowing crisis! Geez, you would think if only the Ins. Co's would pay for the stupid test then they wouldn't have to pay out $20-25K for the Hysterectomy!!! LOL Anyways, glad to hear your polyp was benign-most Tamo induced one's are. Good News! Oh, and as in my case, my insurance co. had no problem approving surgery as the Tamoxifen failed so what else am I to do???? I was pre-menstrual and we did try Lupron and Arimidex but it didn't work either as I was still having a period on the Lupron, so really, trying other treatments are not cost effective to the insurance co. as the Lupron and Zolodex shots are very expensive.(My portion on a 70/30 plan was $400 a shot-that's a car note for me!)  That's another reason why they are in agreement to do Oophs and Hyster's, it's cost effective in the long run!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited July 2012

    Jo - wonderful news - you must be so relieved!!!!  Yay!  Enjoy your weekend worry-free! 

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    vacationbound - The other thing the doctor thought would work in my favor for a hysterectomy is that one of the side effects of Tammi is endometrial cancer.  We both agreed that it all comes down to how it is written up.  I work at a hospital discharge planner when I was in the Air Force and I so do know that is true.

    dancetrancer - I am so relieved.  When this happened more than once it really got me thinking on the dark side. 

  • chachamom
    chachamom Member Posts: 410
    edited July 2012

    Jo:yeah! Yeah! Yeah! Have a wonderful weekend!

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Thanks Jill!  Closing another chapter in this journey - feels so good.

  • momx3
    momx3 Member Posts: 126
    edited July 2012

    In need of pocket prayers til next week.

    Went intoBreast Dr. for my "nipple' formation from a posible lefover stitch and came out with a needle biopsy :/ possible cancer again??? Wonder if I should have done the chemo :(   

    Thank you Tammy friends!!!!!!

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Debbie - Will keep you in my thoughts and prayers.  (((HUGS)))

  • momx3
    momx3 Member Posts: 126
    edited July 2012

    Hi Jo,

    I had my hyster w/ ovaries last yr with my BMX because I had a 3mons pregnant fibroid on my unterus (or in). No quetions asked from my ins and no other options gone through!!! THere were a sew we could do, but nothing wa permanent and I wanted PERMANENT. It really wasn't bad!! In fact, with a few super glued cuts, it was the easist part!!

    Good luck getting better!!! In my prayers!!

  • tinkertude
    tinkertude Member Posts: 1,998
    edited July 2012

    Debbie... will defitnely be in your pocket... hugs!!!!!

    JO... so happy that your results were good!!! wahoo!

  • chachamom
    chachamom Member Posts: 410
    edited July 2012

    In your pocket, Debbie! Hugs and blessings!

  • peg119
    peg119 Member Posts: 190
    edited July 2012

    In your pocket Deb.  Hope all comes out okay.

  • jackboo09
    jackboo09 Member Posts: 780
    edited July 2012

    Hello ladies

    I haven't posted on this thread before. I am mainly active on the triple positive thread, but have a couple of questions you may be able to help me with. I have been on Tamoxifen since Oct 2011 and I do not have any notable side effects other than mild leg cramps. I have read on here (in the section by mods on hormonal therapy), that studies have shown a higher recurrence risk with women who do not have either hot sweats of bone/joint pain.

    Are there any of you like me who do not have these SE's and does it concern you? My periods returned 3 months after end of TCH chemo and I am Now 42.



    Secondly, although I eat well and walk briskly everyday, I do still enjoy a glass of wine (on average 5 days a week) I am aware this is probably too much but can I be just a little reassured that Tamoxifen is helping to block some estrogen?



    I want to get on with life but I have nagging doubts that this medication is actually working for me and maybe I should start Lupron which I am sure will give me the dreaded hot sweats.

    Comments most welcome!

    Liz

  • schipmom
    schipmom Member Posts: 100
    edited July 2012

    Jo, SO HAPPY that it was B9!!!  I think your doctor gave you good advice about the hysterectomy.  I may be going that route too.  I'm so glad things turned out good for you!!!!

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    jackboo - Welcome!  Great support and advice here.  I have been on Tamoxifen for  1 1/2 years and I don't have joint/bone pains or hot flashes and I am so glad.  Just because you are not having these side effects does not mean it isn't working.  Consider yourself one of the lucky ones.  Since there are so many studies out there and some can't agree, I would not read too much into them.  When in doubt, ask your MO.  

  • vacationbound
    vacationbound Member Posts: 37
    edited July 2012

    JB99-Some SE's are not an indicator of the drug not working aka urban myth...I had SE's from Tamoxifen and it not work for me! Most women do stay menstrual on Tamo, some women don't as a result of their neo-adjuvant chemotherapy, but the problem is when you have spotting in between periods or a period that just won't stop!!!! Are you doing any tumor markers?

  • Paula66
    Paula66 Member Posts: 1,572
    edited July 2012

    Yahoo JO on the B9 results!!  Doing mental cartwheels of joy for you!!!

    I am a bit miffed at my daughters appointment Thursday.  I was under the impression that this doctor was going to be the one that would do or not do the BRCA testing on her.  Oh no she isn't the one.  She is the one who can recommend it to be done, but someone else has to do it.  GRRRRRRRR  does the dang medical community think I have a money tree in my pocketbook?  I did get some peace of mind with some of her visit.  She did put my mind at ease somewhat.  

    I know that the SE are different for everyone.  It also seems that they also differ from on Onc to another.  I for one love my onc, but sometimes I wonder about things.  Thats one reason why I love this board.  I can post something and if someone has the same issue they share their experiences.  I'm lucky in the fact that I've had just the usual SE from the Tammo and that its ok.  I'm more aware of certain things that could happen so I make for sure that I stay on top of exams and such.  Before BC struck I was a very healthy woman and rarely went to the doctors.  

    I hope everyone thats being effected by this heatwave have been able to make it thru safely.  I know for one that the hf are still a nightmare for me, but I get by and thank goodness the heatwave will be broken by tonite.  

    Have a great day all!!  Love and Light to you all!!  Love ya my sistas!!  I'm so greatful and blessed to have each and everyone of you in my life! XOXOXOXOXOX

  • chachamom
    chachamom Member Posts: 410
    edited July 2012

    Hi, Liz! Good to see you on this board too! I agree with Jo about the SE's not being an indicator of the Tamo efficacy....

    We are all so unique in our dx, treatments, and SE's.

    I did want to report that after a month of takin Biotin ...my nails are doing better....not great, but noticeably stronger. However my hair is still shedding like crazy (and I had no chemo!)

    I've ordered some BioSil and hope to start that soon, but wonder is anyone doing both the Biotin AND BioSil? Is there any problem with doing both?

  • chachamom
    chachamom Member Posts: 410
    edited July 2012

    Liz..and Paula....I have to admit I enjoy my wine in the evening.....and I had to laugh when I went wine tasting with friends in Temecula a couple of weeks ago and saw a shirt with Paula's signature statement..plus some, "fight like a girl.....drink like a lady.". Lol!

  • jo1955
    jo1955 Member Posts: 7,545
    edited July 2012

    Jill - Let me know how the BioSil and Biotin work.  I take the latter but could still use some help in the hair thinning department.

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