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Bottle o Tamoxifen

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Comments

  • auriga
    auriga Member Posts: 119
    edited April 2009

    Hi Harley44,

    Yes, Tamoxifen can cause changes to your macula. I am supposed to start taking it next month but am somewhat leery because I have every retinal disease you can think of.

    My retinal specialist told me the Tamox can cause macular degeneration which I already have. He said it could get worse. It also can cause cataracts which I also already have. However, the risk for these is very small. Something like 10% in people who have no prior eye diseases. Even though I already have these problems, he is still recommending I take it. If my problems get worse, I can always stop the pills.

    If I were you, I would ask your onco and your eye doctor what they think the risk is for your own particular situation.

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited April 2009

    Jeanbeans.....Hey girl thats Great news!!!  I have it on the top of my list to ask my onc ... thanks sooo much! 

  • Barbie7
    Barbie7 Member Posts: 126
    edited April 2009

    Hello riders.  I've been away from this thread for a while - but I'm back, checking in on my fellow passengers.

    Welcome to all the new riders!

    I think it is time for another one of Basha's big parties. Can we have an ice cream social?  I know someone who might be able to get her hands on some Ben & Jerry's (Viginia - are you listening?) I'll provide hot fudge, caramel and pecans.  If we are lucky, we can get the neighbors to call the police again! Wink

    I am officially on a one-month break from the Tamoxi-train.  The break started Saturday (today is day 4).  For the passengers who've been on the train for over a year, I discussed this break with my onc last July, but was too afraid to stop.  I feel a little more at ease about the one month break because as my onc puts it, I have the benefit that taking the drug for a year has given me, and he's monitoring a short (no longer than a month) break to sort things out. I went back (all the way back to page 34 of this thread) to read my posts from when I boarded the train.  I've kept a SE diary, but it was interesting to see what I had posted.  Anyhoo... the reason for the break is to really determine what is caused by the Tamox, and what might be due to something else.  I'll continue to chart the SE's when I go back on the Tamox in a few weeks.  Then the big QoL discussion with me, myself and I needs to take place.  It will be interesting to see how much I have adjusted to my new normal...

    I'm also FINALLY off of Effexor.  Whew. (didn't help my SE's, so I was tapering off the stuff).

    To all the new riders, please know that I seem to have every SE possible and then some, which is NOT the norm.  I pray that your ride is much smoother than mine. 

    So lets fire up the freezer and haul out the ice cream dishes.  It is time for a party!

    Barbie

  • Makratz
    Makratz Member Posts: 1,605
    edited April 2009

    I'm with you Barbie!! Virginia, where are you????

    Glad to hear you are figuring things out.  I hope this works well for you!  Enjoy your break and eat ice cream!

  • AllieM22
    AllieM22 Member Posts: 188
    edited April 2009

    Hi ladies--

    so far still so good on tamox, just thought I would report in. Started taking it beginning of March and so far no SEs--woo hoo! Am crossing my fingers it continues.  I have lost a few pounds--not a lot (2-3) and I am not overweight so maybe the weight loss or gain depends on each person's body. Also maybe whether you went through chemo or not. I did write down the drug you are on for night sweats in case I need it JeansBeans--thanks for sharing! Glad it is working...

    I would be careful of any diet, whoever mentioned that--I would just get a nutrition book and eat good food. Stay off the processed stuff including crackers, white bread, etc and especially sugar stuff. If you do that and eat lots of fresh fruit and veggies, you should be fine. 

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

    I get an eye test every year and will keep it up. I had not heard of this Macula thing. sigh....

    Spring...

    (PS 3+ wks and no SE's yet...)

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

    auriga,  I sent you a PM....

    Why would your dr. put you on Tamoxifen, if you ALREADY HAVE macular degeneration??  I  don't have any eye problems, well, I didn't...  but now, I seem to have ALL the weird eye conditions. 

    Hugs

    Harley

  • awb
    awb Member Posts: 213
    edited April 2009

    Harley--it's interesting to hear the different recommendations for f/u care. My optometrist said once every 2 years is fine, that the risk of cataracts from tamox is very minimal (less than 1%), and that it doesn't cause any issues with macular degeneration or glaucoma. (I had none of those issues with tamox--just finished my 5 years in October)  Who knows who's right?  I do have very dry eyes and my vision is more blurry without my glasses, but the optometrist said both were from menopause and natural aging process.

    Barbe--have you noticed any difference during the time off from the tamox? I took a 4 month break in between finishing up with tamox in Oct and starting on Evista in Feb, and really didn't notice any changes.  It takes about 6 weeks to get out of your system.                 

    anne

  • Munchy
    Munchy Member Posts: 59
    edited April 2009

    Hello to all.  Good to hear from Barbie - have a nice month off!

    About South Beach Diet - it's actually a very balanced way of eating that you can keep up for the rest of your life - not really a "diet".  I would recommend it to anyone. 

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

    anne-

    I read that Tamoxifen can cause cataracts, and I have a brother and two sisters who have cataracts.  I mentioned this to the eye dr's tech. at my appt., and I was told that  EVERYONE gets cataracts if they live long enough...  end of story.  I NEVER had glaucoma or macular degeneration issues BEFORE I started taking Tamoxifen, so it must be caused by this drug...

    I'm angry because my ONC. NEVER told me that I would go blind from taking tamoxifen. 

    Barbie,

    Enjoy your month off tamoxifen.  I had a two week break last summer, when I had those uterine polyps, and it looks like I may have to hop off this train soon.  I won't see my onc. again til June.  I hate calling his office, but after my eye tests, I may have my eye dr. call him and tell him he's an IDIOT!

    sorry... I'm just so MAD, I could SCREAM!!

    Hope everyone else is doing great.

    Hugs

    Harley 

  • Susers
    Susers Member Posts: 22
    edited April 2009

    Hi All!

     I am new to this forum!

    I have been on Tamoxifen for about a year. Back in February, I started putting on weight at a pace that I was not comfortable with. I am 4'11" and am usually at 100 lbs. Since February I have put on 9 pounds, so 9% more weight.

    I have also had digestion issues coupled with bloating and constant gas. My hair is soo thin on the top back of my head and my nails are failing me. I normally do not have to wear readers, but in the past several months I have had to use my readers all the time.

    About 2 weeks ago I met with my oncologist with a list of side effects. He agreed to take me off the Tamoxifen for 1 month to see what would happen. Literally overnight my bloating and gas subsided and I now no longer fear eating. My stomach was so bloated and now I am comfortable again. Believe it or not, my eye sight has returned to normal again too. Sadly, I have not lost the weight, but it has stabilized instead of gaining a pound every 2 weeks.

    I seriously do not want to go back on this drug but I know my oncologist will not give me a choice as I am premenopausal (period returned after chemo). He did however mention that he would consider reducing my dosage from 20mg to 10 mg. I have read reports that say that you only need 1/20th of the standard recommended dose to be effective.

    Has anyone out there had any of these experiences or had their dosage reduced? Has anyone gone off the Tamoxifen completely?

    I cannot believe how good I feel off this stuff and wanted to consult with some other women who are on the same TAMOX-TRAIN that I am. Laughing

  • Sydney6
    Sydney6 Member Posts: 40
    edited April 2009

    Harley -

    I am new to this forum.  I just read your post about the eye exam and it made me laugh.  Sadly throughout this journey I've noticed that for everything they tell you there are at least 20 other things they don't!  I was told I'd have surgery, radiation and go on Tamoxifen.  Never was the possability of chemo brought up until after surgery (luckily I didn't have to do it because of my Onco Dx score) or the oncologist wanting to put me into menopause, which brings with it a bunch of new potential problems.  I'm so glad I found this website.  I see the oncologist Friday to talk about the menopause drug and the Tamoxifen and now I have a whole new list of questiions for her.

    Sue

  • Makratz
    Makratz Member Posts: 1,605
    edited April 2009

    Sue,

    I agree with you.  I almost died when the dr spoke about chemo after my surgery.  Luckily oncotype dx was low.  They should tell us we have a chance. 

    Good luck Harley!

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

    Thanks, Sue & Linda,

    I'll let you all know what happens when I got back to the eye dr. for those tests, on May 4th.  It seems like a LONG time that I will have to wait to find out what's going on. 

    Harley

  • LeggyJ
    LeggyJ Member Posts: 195
    edited April 2009

    Yep, constipation....I thought I was done with it when I finished chemo., but no.

  • AllieM22
    AllieM22 Member Posts: 188
    edited April 2009

    Yikes--thanks for the heads up on the eye problems! How scary--I will have to ask my eye dr...

  • 07508125
    07508125 Member Posts: 3
    edited April 2009

    have you had problems with yeast infections.  I do hope this is not going to be a continueing problem.

  • lmays
    lmays Member Posts: 23
    edited April 2009

    Hi everyone!  Been reading this forum since my dx in October, but this is my first post.

    Been on Tamoxifen for two months and noticed a dramatic change in my eyesight.  Went to eye doctor last Saturday.  He says he thinks that the tamox is causing the natural aging process of my eyes to accelerate.  It's "fixed" with new contacts, but makes me nervous about the 4 years 10 month ahead of me.

    While I'm here, I'd like to thank you all for sharing yourselves with the rest of us who are battling.

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

    AllieM22 ,  07508125, and Imays,

    Welcome to the Tamoxi train! 

    Yes, I have heard that some women have problems with yeast infections while on Tamoxifen.  I guess maybe by the time I am ready to get off this train, I may have that too. 

    Imays,

    I have to say that the eyesight problem really has me scared!!  I don't want to go blind!!

    Take care all,

    Hugs

    Harley

  • Mary22
    Mary22 Member Posts: 428
    edited April 2009

    I am realy surprised to see all the other se's of Tami. It is very shocking. I already have bad eyes and I hope that is one se that I do not get. Ihave joint pain, moodiness, night sweats, but Effexor 75mg has really helped with all that. I feel more like myself since the beginning of all this in Dec.08. Of cousre I do still get insomnia at times., too much on my mind.

  • awb
    awb Member Posts: 213
    edited April 2009

    I had one bad yeast infection at the very beginning, treated with diflucan, and never had another one since. (finished 5 years of tamox in oct) And tamox does NOT cause blindness!!!!!

    Anne

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

    I had discharge week 2 that went away. And now seems back. It seems to come and go. Does anybody else have discharge with Tam? (about 1 month out now)

    Spring.

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited April 2009

    Springtime  .... I'm 6 months out and mine comes and goes...mostly gone now!

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

    How interesting Sunshine! Same deal, comes and goes. But seemed to trend towards going away! It's not bothersome, just wondering ... Thank you!

  • lmays
    lmays Member Posts: 23
    edited April 2009

    Doctor says eye problems are a relatively rare se of Tamox.  Just important for us lucky lottery winners who get this issue to keep up with more-than-regular eye exams.

    So glad to have learned about Onco Dx from this group.  First oncologist wanted to do chemo, would not discuss my pathology results (lumpectomy or mastectomy), and tried to talk me into a clinical trial.  He gave me a list of se's that I later realized was written in Spanish!  Not my native language.

    Second opinion doc rocked!  Suggested Onco Dx before I had a chance to mention it and explained my condition to me.  I got a 12, so on the TamoiTrain and getting my replacement parts May 6.

    More nervous about my implant, etc. surgery than the two surgeries before this.  Anyone else?

    Lynne

  • auriga
    auriga Member Posts: 119
    edited April 2009

    I just got back from an eye appt with my retinal specialist. He said eye problems from Tamox are considered to be uncommon. He said if they were more common, they would stop prescribing it. Just like Imays doc, he said if you are being followed by a eye doctor regularly, then the retinal damage would be minimal. He also said it could take years for the problems to surface. It doesn't happen right away. If at all.

    It all made sense to me, so I guess I will start taking it and see how it goes.

  • peeps1111
    peeps1111 Member Posts: 70
    edited April 2009

    Hi:

    I don't know about other eye problems but my onc warned me that cataracts are a common side effect of tamoxifen but maybe that is for older women.  I am 55.  I've been taking 10 mgs. instead of 20 because I just feel like we're overtreated and I'm angry and depressed on the 10 as it is. I thought I read recently that a lower dose is just as effective.  I am also taking the supplement DIM which helps too.  I will try and see if I can find that info.

    Peeps

  • Jisman
    Jisman Member Posts: 96
    edited April 2009

    Hi all -  Haven't posted in awhile.  Just started my 4th bottle so now 9 months in and 51 months to go.  Gabapentin (generic neurontin) is helping me sleep through the night; had been waking up almost hourly with hot flashes before starting that med.  My weight, which was too much to start with, is basically holding stable although I feel like it's redistributing and I'm getting a bigger stomach.  My post chemo hair continues to be curlier than it was originally; it does have a bit of a mind of its own!

    Did Relay for Life last weekend.  Emotional.  Survivors lap.  Luminaries with my name and names of others I now know.

    Have recently learned of 3 more women that I know who have been diagnosed with BC.  One had surgery Thursday, another is scheduled for Monday, not yet sure about the third.  Way too many!

    I'm going to be part of the Dept of Defense process for congressionally directed medical funding for breast cancer resaerch.  They have "consumer reviewers" sit on the review panels along with 15-20 scientists to go thorugh the research proposals and rank them on a variety of criteria.  I'm very excited about being able to help advance investigations into finding the causes for BC and ultimately a cure.

    Take care.

  • Munchy
    Munchy Member Posts: 59
    edited April 2009

    Harley - waiting with you on pins and needles for that 5/4 appt.  It seems you have gone through this too many times.  Hope everything is OK 

    Susers - I feel for you.  I am even shorter than you and have gained about the same amount of weight.  My SE's are all about the same as yours - bloating, thin hair, eye sight deterioration.  Plus, add in TONS of hot flashed (my periods never came back).  Is it possible for this stuff to do it's job at half dose?  Wow, I'd love to give that a try.  Besides, if you go by body size, I don't see why we are taking the same dose as someone almost a foot taller and 50 lbs heavier!  Does that make sense? 

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

    Munchy,

    Thanks!  I think I just seem to be worried about everything these days!  I think that the 'active treatment' part of my treatment was alot easier than this post treatment phase.  The NEW NORMAL just sucks!

    I'd like to ask my onc if it would be acceptable for me to take 1/2 pill each day, but I'm afraid he'll say NO.

    Hope everyone had a great weekend!

    Hugs

    Harley

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