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Bottle o Tamoxifen

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  • 1in8
    1in8 Member Posts: 4
    edited March 2009

    Hi PatMom,

    Meanwhile, been using a leftover tube of Monistat around labia yesterday afternoon and evening. Burning is just a tad better. No urgency / burning when going #1 so I'm leaning away from UTI and more toward yeast or just more vaginal atrophy. I do believe the little pinprick specks of blood are from the outside due to tissues becoming very delicate as you mention.

    Using mostly water w/ just a hint of vinegar to make pH less hospitable for yeast. No stinging by diluting even more. Just rinsing down outside and barely at vaginal opening (not douching).

    Just happened to have RAD follow-up w/ RAD ONCO a week a go last FRI--so she's the doctor I last saw. That just happened to be when discharge started getting out of control and I mentioned it to her.

    Don't have GYN but 2 primary care physicians (at 2 different locations) instead: my original PCP whom I like very much and can still see as a PPO or cash patient and my new PCP whom I changed to when switching medical groups so I can see my MED ONCO as part of my HMO (trying to get handle on my med bills). Unfortunately, both doctors are in high demand and tend to book up way in advance. Calling right when the office opens never works but gets me the switchboard instead. Will wait a few more minutes first before calling.

  • karol61
    karol61 Member Posts: 36
    edited March 2009

    Barbie,

    This dreaded disease is so complex,isn't it? I've been on Tamoxifen since 07/07, but I had a complete hysterectomy and oomphectomy before I got BC, so I haven't had some of those side effects. 

    I still have hot flashes although they have diminished considerably, leg cramps but they come and go. The good side effect is bone sparing since I have osteoporosis.

    Hang in there,maybe one of the other hormonal meds would be better.

    Karoline 

  • Munchy
    Munchy Member Posts: 59
    edited March 2009

    Murphmort, thanks for the book recommendation - I am under 5' tall, so every pound makes a huge impact.  Yeah, I am trying to be positive about my daughter's return.  I did miss her alot, and we are saving a lot of money this way.

    Harley - wow, sounds like a great trip.  You deserve it.

    1in8 - I too have always had yeast problems, almost constant for many, many years.  The thing that has helped to keep things under control is cutting out sugar as much as possible and taking probiotic supplements.  Also, keep a bottle of water near the toilet so you can rinse with water often. (just plain water)  I also found it soothing to use a natural, unscented baby-oil on the entire area, after rinsing with the water and letting it dry.

     By the way, has anyone heard of Tamoxifen having damaging effects on the kidneys?  I had a blood test before my most recent surgery and noticed high BUN levels.  When I looked at my past year's tests, they show gradually increasing levels since I finished chemo.  Was it the chemo?  is it the Tamoxifen?  My doctor didn't seem to be worried when I brought it up a few months ago, saying that I might just be dehydrated.  But now it's even worse.  Am I being a hypochondriac?  (I hate that)

  • murphmort
    murphmort Member Posts: 76
    edited March 2009

    Hey girls - sounds like we have some "newbies" on board.  Good luck to you!!!

    I definitely don't have some of those side effects, thank goodness.  Only the hot flashes ... which are very annoying.  I have not heard of the effect on one's kidneys, only the liver.  I did get a call today from my oncolgoist just to give me my CA125 #.  It's low, so that is good.  Also had my follow-up ultrasound on Monday.  Won't know the results until Thursday when my medical oncolgoist calls with my other test results.

    Have you googled the kidney effect when on tamoxifen???  The drug fact sheet that I receive with my prescription does not list that as a side effect.  But who knows!!!!!!!!!

    My oncologist told me that even the cyst on my ovary probably isn't caused by the medicine, it's normal in pre-menopausal women to get cysts.   But who knows!

    Take it easy, girls.  Munchy, hang in there.  Enjoy your daughter being around ...

  • 1in8
    1in8 Member Posts: 4
    edited March 2009

    Good thing I was being patient active and called more than one doctor. It took the chemo nurse from my MED ONCO's office over 24 hours before calling back just to tell me to go see my OB. Yes, OB not OB/GYN. She said my onco does not deal w/ the problem I'm talking about. I wonder if chemo caused the vaginal irritation, then would she see me? Anyway, I told the chemo nurse that I don't have an OB anymore so she told me to see my PCP instead.

    Fortunately, I had the foresight to call my previous PCP's office, too, yesterday and they managed to squeeze me in today. The verdict is that I'm extremely red down there and it is probably yeast though my doctor is sending a sample out to be cultured. Meanwhile, I can self-treat for yeast infection if I want as the culture will take about a week. Fortunately, the constant low-grade burning gradually gave way to sporadic intense itching. Who wants to go through that for a week--my doctor said that she wouldn't. She also said that coconut oil is safe to use inside and out in the vaginal area once my infection is all healed.

    Munchy - I've been taking 2 acidophilus capsules TID ever since chemo (w/ my onco's OK) since I've always been prone to canker sores and I only had 1 small one which is a miracle for me. That's worth it for me to keep it up even though I finished chemo on 10/29/08.

    I'm already been doing all the "right" things to hopefully prevent yeast infections as I've been prone to them before: no white sugar and hardly any other kind of sweets or refined carbs, white 100% cotton underwear, no pantyhose, unscented white TP, no fragrances in anything, double rinse all laundry (I have sensitive skin),  no fabric softener (I use white vinegar in the rinse cycle and that also helps to remove all traces of detergent while softening the clothes), etc. And of course, I have the some OTC med on hand just in case anyway.

    Please note that Munchy and I are using plain water or diluted vinegar water (~2t vinegar per 8 oz water simulates normal vaginal pH) as a peri-rinse for the outside only; we are not using it as a douche. Sitz baths are OK too.

    Lots more self-help tips here:  http://www.nva.org/patient_services/Self_Help_Tips.html

    Murphmort - I had a pelvic exam / PAP smear before chemo and that's when my PCP noticed my uterus was enlarged. She sent me to have a Trans Vaginal Ultra Sound and 2 hemorrhagic cysts were discovered (1 on each ovary). After chemo and before radiation, another TVUS showed only 1 cyst (no longer hemorrhaging). My latest TVUS after radiation and before starting tamoxifen showed very slight shrinkage in that remaining cyst and another 1.6mm one on the other side. So, at least in my case, I know these cysts weren't caused by the tamoxifen. From other posts on this board, I've gathered that tamoxifen can cause ovarian cysts.

  • Harley44
    Harley44 Member Posts: 2,126
    edited March 2009

    1 in 8,

    sorry you are having so much trouble.  I also had a yeast infection (just kind of a discharge and extreme itching problems), so I self medicated, with one of those OTC products, and the itching went away.  However, I have been experiencing alot of bloating, and I'm getting discharge after exercising, which happened to me last summer, and I ended up having to get a D & C, which hurt worse than ANY of my tx, including bilateral mast., and chemo, so if it's starting up again, I will not finish this year out with Tamoxifen.  I'll insist on switching to an AI or something else.  However, I am trying to make it until my next onc appt., which isn't until June 12th.

    Deb,

    I hope you won't need to have a D & C.  Have you had one before?  They are VERY uncomfortable.  Well, I never could have babies, so maybe I'm a bit more sensitive to this kind of pain than other women, but MAN, when I woke up in recovery, I had the WORST cramps!  I said something like  "I AM FEELING CRAMPY!", and BANG!, they shot me up with some more painkillers, I guess, because I was out like a light.   Will they be taking out your ovaries, to get rid of the cysts?   I'll be thinking about you, please update us after your dr. appt.

    I had an appt. with Olsten Temp Staffing Services on Tuesday, and the rep. seemed very nice.  She seemed to think that things were going to get busy soon, and she even had a phone call from an employer, asking for temp services when one of their clerical 'girls' goes off on maternity leave.  I've also applied at a few other places, some vet offices and even the local garden center, so I'm hoping that by the end of March something will open up.  It's kind of depressing.  Here in NC, if you don't know someone who can hire you, you might as well give up.  I don't know ANYONE who can hire me so I think it will be difficult.  Also, it's frustrating for me, because I inquired about working at the local library, and was told that they weren't hiring... you know, the bad economy and all that B.S.   Then, just today, I was talking to a friend at the coffee shop, and he said that a friend of his was HIRED at...   that very same library!!!  

    Anyway, sorry for ranting.  Thanks for asking.  I'll let you know if something happens from the temp. agency.

    HUGS
    Harley

  • emath
    emath Member Posts: 18
    edited March 2009

    I have been on Tamoxifen since Oct 2008 and have had bad reactions with it. Leg cramps, back hurts, hands swell and hurt, night sweats all night long, hot flashes that make me feel like I am about to burst into flames, no to mention the problems down below! Vaginal area dried up and was so swollen that I would start bleeding at times. The pain was horrible. Onc ran more blood work, I go back today to see if I can take something else. He wants me off Tamoxofien. Sometimes, it comes to qaulity over quanity and I am about there! Will keep you all informed.

  • Northstar
    Northstar Member Posts: 31
    edited March 2009

    Ellen, my med onc said that it's fine to use the Estring, since it releases a tiny amount of estrogen in a very localized area.   I'm doing that and it is helping a lot. 

  • emath
    emath Member Posts: 18
    edited March 2009

    Estring? I have not heard of it, can you tell me more?

  • Munchy
    Munchy Member Posts: 59
    edited March 2009

    On pins and needles to hear what the Estring is and what it does!

    Harley - good luck with your job hunt.  I know that things are tough out there.

    Hello to all.

    Munchy 

  • emath
    emath Member Posts: 18
    edited March 2009

    Hey Northstar.... are you there? Waiting to hear what Estring is. I must really be out of the loop! LOL

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited March 2009

    Does anyone know if tamoxifen causes a fatty liver?  Thanks.

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    Has anyone noticed increased irritablity with tamox?

  • prayrv
    prayrv Member Posts: 362
    edited March 2009

    OMG!!!!  YES!!    Surprised

    Nuf said.

    Hugs,

    Trish

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    I am calling my onc today.  I have to have something before I go nuts.  I am arguing with everyone that even speaks to me and that is soooo unlike me.  I have zero patience and zero tolerance.  I think you can take effexor.  Have any of you ever taken that?

  • prayrv
    prayrv Member Posts: 362
    edited March 2009

    Traci

    I haven't taken anything for my issues.  My intolerance and zero patience seems to only raise its head during the normal PMS time (makes is worse!!) and during my period when I feel like shit to begin with.  Others here have taken either effexor or zoloft.  I have a friend that takes zoloft (it helps with her hot flashes)  Since I don't take either, make sure with your onc if they won't counteract Tamox.

    Trish

  • emath
    emath Member Posts: 18
    edited March 2009
    Joyce, yes it can cause a fatty liver and high liver enzymes.
  • paweed
    paweed Member Posts: 4
    edited March 2009

    Traci-  I was irritable,grouchy, depressed and so totally not myself.  I couldn't sleep and I have never had problems sleeping in my life(except when I was on the roids prior to the chemo!)

    The day I could care less whether I lived or died I stopped taking the tamox.  That was 3 weeks ago. I began to feel better in a few days, didn't have to take a sleeping pill to sleep by the 5th night and by about a week or so was getting back to my usual "easy" self.  I called my onc on a friday, 5 days after I stopped, well, by the time we finished playing phone tag, he went on vacation and I won't see him until april 8.  I don't know if his nurse told him I had stopped or not but it will be interesting what happens in a short time.

    I am loving being myself again

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    I started a very low dose (37.5 mg) of effexor tonight.  I will let everyone know how I feel tomorrow....I hope I don't have this irritability much longer. 

  • Jisman
    Jisman Member Posts: 96
    edited March 2009

    Traci -  I'm taking Neurontin to help me sleep through the nights and not wake up every hour with hot flashes.  It's working fairly well for me.  My Onc suggested we try this before trying Effexor.  Lots to be said about getting restorative sleep.

    Joan

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited March 2009

    Emath:

    Thanks.  I found out about the liver because I had a chest cat scan with contrast to check on post radiation inflammation in my lung which is clearing up and that's when I found about my fatty liver.  Had a blood test in January and liver enzymes were fine.  I see my dr. in June.  Going to ask her if I should switch from tamoxifen and try something else.  Not sure if fatty liver is serious or not.  Been on tam 15 months and I am post-menopausal.

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    Joyce if you are post menopausal then you could be on Arimidex.  I would rather be on Arimidex but I am pre meno so I have to take tamox. 

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited March 2009

    I started taking tamoxifen back in November 2008.  Hot flashes...some leg cramps and weight gain....but so far all is do-able. 

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2009

    Hi Ladies, I start tomorrow. Just finished rads. I haven't read your 82 pages of posts!!!! (What a group!)

    Any suggestions on what time of day to take, (day, night) and do you take all at once vs. half pill and half pill? or just experiment?

    I start tomorrow ((gulp))!! 

    I was regular with my periods up until chemo. Bloodwork now shows that I am at post menopausal levels, but the onc feels she is not quite confident that this will hold, she says my ovaries may bounce back. (I am 50 and my mom had period until 54, if you can believe it!) Another test showed I am an "extreme" metabolizer of Tamoxifen. She recommended that given this, that I go on Tamox. for 1-2 years then move to an AI, if they can show for sure I am really "post" menopausal by tracking my blood levels.

    Just a little nervous! Spring.

  • awb
    awb Member Posts: 213
    edited March 2009

    spring--I took it all (20mg) in the am along with my other meds, so I wouldn't forget. I finished my 5 years of tamox in October, now I'm taking Evista

    anne

  • Mary22
    Mary22 Member Posts: 428
    edited March 2009

    Traci1970, I too will start taking Effexor XR 37.5 mg tonight. I have been moody, crying irritable. I really hope it works or I will ruin my children. It seems I am always yelling at them for little things lately.

    Good Luck and God Bless.

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    mfgibby, I took 1 pill last night.  I have not yelled all day.  I can tell it is working for me.  I have not cried or gotten upset and I feel normal.  I was sick but I think it was something else.  I feel very good about this.  Time will tell.  I hope you feel as good tomorrow as I do today!  :) Traci

  • emath
    emath Member Posts: 18
    edited March 2009

    Hello Ladies! When I was on Tamoxifen my onc had me taken effexor. I took the first pill and went bonkers! So, after the effects of that wore off I knew that was not for me. Then he tried Zanax. I could take that ok, but did not help with hot flashes or night sweats. Did help with mood swings though. March 9, 2009 I stopped taking the Tamoxifen. Now I am working myself off the Zanax. Onc gave me a new drug called Femera I am to take for the next 5 years. Well, after doing research on this drug, I have decided not to take it either. I talked with my onc and he agrees that it is my choice and that sometimes if one drug causes SE, then chances are high the other drug with effect me as well. He is ok with me not taking these drugs, but still wants me to do all my follow ups every 6 months, which I totally agree. For me right now I feel the quality of life is more important than the quanity of life. If it comes back, then I will deal with it, but not today! I am slowly feeling better. I lost myself several months ago and I think I found where I have been. I am starting to look in the mirror and remember who I am and that is a great feeling! My children are grown and I have 4 grandchildren. My husband and my children have seen what I have gone through and they understand and respect my decision to get off the meds. I plan to stay on these threads for it does help! I wish you all the best with whatever you do in life. Right now I am dancing with NED and plan to stay that way! I want to live and feel alive!!!! God Bless us all!

  • traci1970
    traci1970 Member Posts: 104
    edited March 2009

    emath how did you go bonkers?  Did it make you hyper or sick or what?  It is very difficult for me to take all of these drugs but I am only 39 and I have to do everything I can to see my 1 year old and my 15 and 22 yr old daughters gorw up.  I don't know what the best path is for me but I certainly am looking for it. 

  • sue_blue
    sue_blue Member Posts: 152
    edited March 2009

    A lot of people are able to take effexor with good results, some people are just more sensitive to some meds than others. I couldn't take the effexor either, but I know several who have with great results. Traci, you need to do everything you can to make the meds tolerable for you.... maybe the effexor will help. Here's hoping it will be some of the relief you are needing.

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