About-to-Start-Hormones Group

NancyD

I have to say, it comes with natural menopause, too, so it's just a part of getting older, albeit maybe a few years ahead of nature.

Mine started at my waist and drop in front. I'm thinking that will be my new breasts in a few months, LOL.

nancy258

Only the fourth day for me on tamox, and the queasiness I had the first couple days seems to have passed.  I feel pretty normal so far.  Woke up a couple times and had to throw my leg out of the covers, but had no trouble going back to sleep.  I did that before tamox anyway.  So keeping my fingers crossed, so far so good!

pattyk

Hello to all,

 I've been on Arimidex since the middle of November and so far can't complain about side effects except for restless sleep, which happend before the drug too.  Regarding the weight issue, menopause has the same effect.  I jokingly say I went to sleep one night, and while I was sleeping someone stole my waist!  I ;haven't had weight gain yet on the Arimidex but did gain 5 lbs. while on radiation.  I think I was just too tired to move at all.  Hope everyone had a great Thanskgiving and we all will have a great new year!

creampuff91344

This is my first time to post on this site, and have read from the beginning all of the posts since inception.  It is interesting to see how the side effects from Tamoxifen vs AI's are being handled, and really how well some of you are doing.  Personally, I was prescribed Femara, am post-menopausal, and took the pill religiously every day for two and a half months.  By then I was in such a deep depression that I couldn't get out of the house, and that is really not my personality.  Taking anti-depressants are not an option, as my system does not tolerate even the lowest dosage of those meds.  So what do you do?  I have stopped the Femara for the last two weeks, and have gradually pulled myself out of the black hole I was in for so long.  I meet with my oncologist next Tuesday, and will try to explain the severity of my situation.  Hopefully he will listen, and will probably not be to happy about my "vacation".  All of us are in the same situation....you have to do something to keep the beast away, but you don't want to ruin your daily life to do it.  What a delimma!  Anyone have suggestions?

Judy

Welga

creampuff: I fell for your because I also cannot tolerate antidepressants, tried them all and wish I could find something to calm me down and lift the veil, my depression got better after one year and half of Femara but still I'm not out of it completely, don't dare to try Sam-e or anything that affects the brain as I'm very sensitive in that respect too many side effects.. I have been taking Omega 1500 mg a day maybe that is what helped me and magnesium citrate but I could do better it only lifted half of the depression.

  Welga

tkone

All,

I am back from vacation and have officially started Tamox.  I have only been on it for 3 days and I take it at night as others here have.  So far no problems/side effects or issues except for some back pain.  I am keeping my fingers crossed that it stays that way!

Hope everyone had a good Thanksgiving. 

yawyaw

Hi Everyone, I am hoping for a little help and advice. I will be done with radiation in a few days and supposed to start tamoxifen immediatly.  Here's the deal, I have had blood clots in the past and am a little scared to start. He says he would rather have me take the tam. and a baby aspirin than have my ovaries shut down and go on Arimidex. I am 45. I have to make a decision soon and am very confused about what I should do.....HELP!!

KAK

Yaw, when did you have blood clots in the past?  During pregnancy or some other circumstance?  High-blood pressure, obesity, smoking & other things are what increases the risk for blood clots in general.

The risk for developing blood clots while on tamoxifen increases only slightly -- less than 1% of women on tamoxifen appear to develop clots & mainly they arose in women who were also on chemo.  After radiation for early stage BC, your risk for a recurrence of BC in the first 5 years after is somewhere between 10 & 20%.  Tamoxifen cuts that in half or better.

If you had blood clots in the past, are you already taking a baby aspirin?

You could ask your primary care doc for some input, too.  Hope this info helps.

KAK

BTW, I backed down my Effexor to 75mg/day because I got a little two speedy.  Am back to my usual post-menopausal sleep issues.  Need to get some tryptophan.  Any other sleep suggestions?

bluegems

KAK,

My onc prescribed Lunesta yesterday. I'm on 37.5 mg of Effexor - just started that 2 weeks ago. I was taking Ambien CR, but insurance will no longer cover that until I "fail" Ambien (already done) and Lunesta (trying not to, but up again this morning at 3) Getting up and not being able to shut down the mind is getting old again. I actually had that under control until the dx - go figure.

yawyaw

KAK,  one blood clot was when my son was born and the other was after foot surgery. I am not taking baby aspirin now. I know the risks are low, but it scares me. Although I am getting the feeling that most people would rather be on Tamox. than Arimidex.  Also, the risk of ovarian or cervical cancer seems to be a risk, so why don't more people have hysterectomy's-one less place to have cancer.

elisabeth

Hi yawyaw and bluegems.  Two bits of info to add to the discussion - Lunesta - I am, for the first time ever, taking a sleep aid (lunesta) and actually do get some sleep.  I also do better with Arimidex when I take lunesta and get some sleep.  I sleep maybe an hour without it.  I really dislike both lunesta and arimidex.  But, even my conservative surgeon said she would rather have me sleeping than not.  She said to take it every 3rd night, but I can't go that long without sleep.  My MD who is anthroposophic said to do up to 20mg of melatonin and/or natural drops called Avena Sativa.  These drops are for sleeplessness, agitation and nervousness.  I haven't tried them yet because I just got them.

Tamoxifen versus Arimidex, hysterectomy, etc. - I asked my med onc about removal of the uterus or surgery so that one could take tamox, but he said that noone will do that kind of procedure here (Ohio).  He also thought it was too radical of a choice.  So, like you mention, a lot of us would prefer tamoxifen, but he said no.  I have to ask again.

hope some of this is helpful.  I'll take any help you are all willing to offer.  thanks. e 

Wndalina

KAK - the raciness has seemed to have subsided.  Whew!  I had a night or so where I think my body was really adjusting and now I seem really well balanced.  I will say I am VERY tired at night - about now - 8-9pm I am so tired my eyes water.  I think that is the culmination of the rads though - not the Effexor.

I really want a cocktail but was trying to not have alcohol the first week or so while I was still balancing.  I might partake in one drink.....  hmmm - still toying with the idea.

So, so far so good.  I am really pleased with my decision to do this first.  Hopefully it will help when I start the bottle sitting next to it....

KAK

Oh, elisabeth, thanks for reminding me about melatonin.  That might be helpful. 

Wendy, I seem to be chilling out, too.  Also, I was exHAUSted for a good month or so after rads, during which I got some of the best sleep I've had in years!  LOL  There's a silver lining for you!

Yaw, I think I've posted links to research results on this elsewhere here, but just to let you know, the risk of developing edometrial or uterine CA while on tamoxifen was found to be about 1/10 of 1%, i.e. less than 1 woman in a 1000.  Do, so pretty small, especially compared to our recurrence risk.

elisabeth

Hi KAK.  Thanks for this information.  I need to ask you though, about my dilemma. I am on Arimidex and am having a really hard time on it.  My mind (and probably my body) tells me it would like to switch to Tamoxifen, but both my med onc and my general practitioner say no because I have a uterus.  Is there anything I can show them (data, study, etc.) that would help us to make a decision?  I must reiterate, because I can't stop being angry about this, that all of these decisions seem like bad ones because these poisons all have such strong effects on our bodies.

Thanks so much. e 

artsee

My Onco says no to Tamoxifen. The side effect for women with a uterus is uterine cancer. So none of these are very good trade offs.

Artsee

KAK

elisabeth, yaw-yaw & everyone, I've been compiling clinicial info that your docs can read about certain issues.  Bear with me if you're not a scientific researcher!!  It's important to place increased risks in perspective, so I've included some of the hard numbers, so each person can weigh the relative risks for herself.  This is the kind of thing doctors have to plow through to educate themselves, so you can bring or email your docs the PDF files or links & email the website links.

Here's an extract from an article written by a medical oncologist about blood clot risk:

"I am often asked to evaluate women who are about to initiate tamoxifen to prevent the development of breast cancer. The question posed to me is whether they can tolerate tamoxifen safely, especially if they have risk factors for DVT or PE. On the basis of the spectacular data favoring tamoxifen, I believe the prevention of breast cancer should take priority over the risk of venous thromboembolism. Often, reassurance of the patient suffices. After all, one third of the venous thrombosis episodes reported in the 4 tamoxifen prevention trials were superficial phlebitis, not DVT or PE. In the International Breast Intervention Study (IBIS)-1, the largest breast cancer prevention trial that collected data on the frequency of superficial phlebitis, DVT, and PE, there were twice as many women with DVT as with PE.2 In that trial, there were 4 deaths from PE: 2 in the tamoxifen group and 2 in the placebo group. If the risk of developing DVT is high, then I recommend concomitant systemic anticoagulation for the 5-year planned treatment period with tamoxifen. If the risk of developing venous thromboembolism is moderate, then I recommend concomitant low-intensity anticoagulation, usually with low-molecular-weight heparin administered in prophylaxis doses."  Dr. Samuel Goldhaber    Here's a PDF link for this article:  http://kksphotos.com/files/TamoxifenBloodClotRiskPerspective.pdf

Here's a summary of results of one research study on benefits versus risks, which compared the incidence of risks between women on tamoxifen & those who were not.  Out of the women taking tamoxifen, 2.3 women in 1,000 developed uterine CA compared to just under 1 woman in 1,000  who developed uterine CA & who did not take tamoxifen.   For the incidence of blood clots in the lungs, 2 pre-menopausal women in 1,000 on tamoxifen developed one compared to 1 in 1,000 pre-meno women who developed one & who were not on tamoxifen.  For blood clots in the leg, the incidence was similar.  Post menopausal women had a slightly increased incidence of blood clots, whether they were on tamoxifen or not, compared to pre-menopausal women.  Here's a link to a downloadable PDF:  http://kksphotos.com/files/TamoxifenRiskversusBenefits.pdf

Here's a link to a more general PDF on tamoxifen's benefits & risks, which lists the percentage of benefits like bone strength & decreased cholesterol:  http://kksphotos.com/files/Tamoxifen.pdf

Here's a link to an abstract of a research study article on aromatase inhibitors, comparing risks & benefits:

 http://www.ncbi.nlm.nih.gov/pubmed/17890211?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedreviews&logdbfrom=pubmed

An excerpt is quoted below:

"...Clinical trials comparing AIs with tamoxifen in the adjuvant setting have shown that AIs are well tolerated and are associated with a lower incidence of gynecological symptoms and hot flushes than tamoxifen. However, AIs are associated with musculoskeletal side effects, such as arthralgia, myalgia and bone loss, but these events are preventable or manageable. The effects of AIs on lipid metabolism and the cardiovascular system are still debatable, but placebo-controlled trials provide no evidence to suggest that AIs adversely affect these systems."

yawyaw

KAK,

Thanks so much, this is good information. I am still taking it all in and weighing my options.

YAW 

elisabeth

Hi KAK.  Thanks so much for the info.  I am going to go to the sites and read all of the information.  I see my rad onc on 12/19 and will continue on my journey to making a decision.  

e 

elisabeth

Hi KAK.  I went on the web site for the article on aromatase inhibitors and didn't get the abstract.  Do you think it will come up if I search AI's or is there something more specific that I need to enter.  I am a researcher and would love to hear if you have any other articles (scientific and otherwise) that you would recommend.

Thanks again.  e 

yawyaw

Hi, I was just reading the Tamoxifen conclusions and it said that women who are at a greater risk of 10% recurrence would benefit the most. My score was 13%, I am wondering if that is significant enough to use it.

Yaw 

KAK

Yaw, hormone therapy cuts your recurrence risk in half no matter what it is.  What score are you referring to?

Elisabeth, here is a similar one! 

http://www.ncbi.nlm.nih.gov/pubmed/17890211?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedreviews&logdbfrom=pubmed

KAK

This link is on the bone loss issue with AI's:

http://www.ncbi.nlm.nih.gov/pubmed/16953982?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed

yawyaw

KAK,

The score I was referring to was the OncotypeDX test that gives you recurrence score based on all your information.  Has anyone else had this test? It saved me from having to do chemo, which would have been more a risk than a benefit in my case (so they say!).

www.oncotypeDX.com

Yaw 

elisabeth

KKAK.  Thanks so much for this site.  I read the abstract.  I wonder if the person that did this has any connection to the big pharmaceutical companies.  The abstract said that there is no evidence that AI's raise cholesterol and/or blood pressure.  If one looks at many of the posts on this site the majority of women on AI's (especially Arimidex) say that their cholesterol and BP have gone off the charts.  Further, he states that they are well tolerated.  I have seen two posts of women that do not have significant side effects.  I have also seen these same reports on numerous other web sites.  I don't get it.

 If you have any other info or sites I'd love to hear about them.  Thank you, thank you. e 

Makratz

yawyaw,

I had the oncotype DSX test too and it saved me from having chemo.  I don't think it's covered by all insurance companies and I believe it's expensive.  I find it funny that some companies don't cover the cost of the test but do cover chemo.  Chemo is alot more expensive than the test. Companies could save a lot of money by offering the test and then finding out who will not benefit from chemo. That's more money in the companys pocket and less chemicals in our bodies!  I would hate to have chemo unnecessarilly.

yawyaw

Makraz,

So true! My insurance denied coverage, but Genomic Health (the company who does Oncotype DX testing) is appealing, they will assist you with up to three levels of appeal. They are great to work with. My insurance covered genetic testing, but not this....doesn't make sense to me, and my Dr. said I would most defintely being doing chemo without that test.                                              

How is your experience with Tamoxifen?

Thanks, Yaw

HopeForBest

Hello Ladies,

I was browsing your posts for a while. Sahring the exprience in this journey is important for all of us. The info provided by KAK is very useful, Thanks KAK.

I had bilateral on Nov. 17. after Lumpectomy on Oct.29. I saw my oncologist yesterday. I was told by my surgeon that i might have chemo, rad and hormonal therapy. But my oncologist surprised me I need only Tamoxophine. I am surprised because the tumor removed was very big, Grade 3 (14X9X3.5cm ) with some invasif element of (1.5 X 1X.5cm) in it on the right. The sentinel nodes are negative. He also said if I want, I could go for radiation.

I was expecting chemo and  told him I would like to have more security. Then he said I can start Tam now and go for radiation in January. He will send my reports to radiation oncologist.

I am a bit confussed. Am happy not to go through Chemo but I also feel am missing important treatment. Any advice on my situation is appreciated.

Best regards to ALL,

Hope

elisabeth

Hi Hope for best.  It is all very confusing.  However, some groups (docs, etc.) are beginning to talk about over treatment. I have heard that recently there was a symposium at Univ. of Mich where they discussed how much over treatment is occurring -- especially for women with breast cancer.  I don't know who did the symposium, but it would be interesting to find out about this.  There was also a post recently (I don't know which group) by someone whose onc was very concerned about over treatment.  I am very confused also, but would like to hear more about the over treatment concerns.  

I wish you the best and if I hear of any good information I'll pass it along.  If you have any info or if anyone else does, I'd love to read/hearmore.

 e 

HopeForBest

Thanks Elisabeth.

I thought also about overtreatment. But i also knwo we need to be agressive aginst BC. I will talk to my oncologist again.

Yourself what kind of treatment are you taking? Have you done rad?

Regards,

Hope