on tamoxifen 1 month, going crazy help

Pompeed

It seems to me that a great deal of what happens is an experiment of one.

There are statistics. And from the statistics come the probabilities and conclusions based on the probabilities.  For the population involved.

Whether one could have fit into the study protocol and been part of the population involved and tested is the unknown.  Maybe.  But then again maybe not.

I was initially offered a choice of the aromatase drugs.  But declined because of concerns about my bones as I am already osteopenic: cannot expect to ride the horses with weak bones.  So I said no.

Disappointed oncologist then suggested tamox and gave me the general litany of side effects.  The risks for me would be mostly the possiblity of uterine changes.  Which I thought could be managed with aggressive surveillance.  So I took the plunge and as the experiment of one, there was no way for me to live on it for two months much less five years.  Quit.  Without telling the oncologist to make sure that what was causing me so much trouble was the tamox and not something else.

Back to oncologist at appointment time and said "no way, no how."  At which point the MD had the obligation of advising an aromatase drug instead. 

Well, maybe.  But certainly not now during ridng season.  I'm not going to experiement with something else, risk ending up in bed or risk losing more riding time than I have already lost this year.  Had this same conversation with gyn MD yesterday: you really have to take something to reduce your risk and if you experience side effects, then take something for that too. 

Which is a lesson in the obvious: everything has consequences and doing A here right now means one may have to deal with the B consequence which arise from that too.

Maybe I will try the aromatase stuff when the cold weather is back and I don't ride much but swim and go to the gym a lot more.  Maybe.  But no promises.

Am I taking a risk by being on nothng and not doing what is known to reduce risk of recurrence in certain populations to which I might belong? Yes.  That's what I am told. 

On the other hand, what good is it to take something and become dysfunctional now as a result in the hope that I will end up on the right side of the probabilities some time within the next decade?  

Bren-2007

Good question Pompeed.  It's one we all have to answer for ourselves.

I'm not taking Tamoxifen or an AI against my doctor's advice.  They made it clear that it was the standard of care in ER+ cancer.  And my tumor was 100% ER+.  I tried both medications and could not take them for more than 6 weeks.  The effects were too much for me.

I had to weigh all the statistics and research all the information I could to make my decision.  With no guarantees that the medication would work for me, I could not live with the side effects and the medications to treat the side effects for the next five to ten years.  The meds to treat the side effects of nausea and vertigo were just as bad as the Arimidex!

I don't recommend my choice to anyone, but suggest that everyone does their own research and soul searching to decide what is best for them.

Hope all is well with you,

Bren

robynkk

Pompeed I agree totally with what BinVa said!  For me there really wasn't much of a choice because Tamox put me in bed and made me totally not functional plus my ONC told me it only increased my odds by about 6% anyway, he was fine w/me going off of it.  My heart truly goes out to you though reading this, it takes me back to where I was in Dec/Jan and that was not a good place. 

My prayers are with you and only you can make this choice!  xxoo Robyn

debjay417

I'm new to this site...just found it today.  I was diagnosed with invasive lobular carcinoma in the right breast on May 3 - stage IIIC.  I am on a course of 6 chemo treatments - took my 4th on July 21.  I was in the hospital for 4 days after the 3rd treatment.  I am supposed to have 20 rounds of radiation when chemo is over.  I am 59 years old...just so you know I've been around a little while.  Right now I am questioning whether I even want to continue with chemo...I have no energy, bones ache, etc.  I guess I just want to vent a bit...how do you decide when/if to stop treatment?

Thanks for sharing...it does help.

Linda-n3

Debjay, you can stop whenever YOU want! I wish I had stopped when I first got symptoms of neuropathy, but did not, and now have continued problems.  However, it looks like you have a more aggressive cancer (I also thought mine was more advanced/aggressive, so decided to do chemo rather than just mastectomy), so chemo may be your best option for taking care of any of those cancer cells "already on the road" as mine was. I now have NED on scans.  And most of the SEs are temporary - check with your MO. And then come back here and vent as needed!

That being said, I discontinued the tamox due to SEs that I just could not tolerate, and I did give it the old college try, over 6 weeks of misery.  Decided not to do AI due to bone loss and borderline osteopenia already, and I already have lots of joint problems and just didn't want to deal with that. And finally, I also refused radiation because I already have nerve damage and just cannot accept any further damage to my dominant arm and hand.  My quality of life depends on a few things, and being able to use my hands is pretty important. Pompeed, BinVa, and Robyn, I am glad to find other women who have chosen to NOT follow "standard of care" based on personal and informed choice.  I also do not recommend this approach to others, but I DO think all women should have more information available to them so that those choices can be INFORMED and rational rather than being based on fear of what might or might not happen in the future. I was also bedfast for a couple of weeks on tamoxifen with such bad pain, and was given tramadol for pain relief, which put me to sleep for 4 days, dried my mouth out so badly I could hardly talk, and messed my brain up so I could hardly think strait.  It has taken me over 4 months to get back to where I was before I started it.  My MO is not happy with my choices, but she has been kind and gentle with me, probably because she feels pretty badly about me getting so many SEs and a lot of her patients don't have them, so she led me to believe I would do find, just like everyone else.  I didn't. And I have no regrets about my choices after chemo, am moving ahead with life. Debjay, if you need to vent more or have questions, you cna PM me.

Hugs to all tonight,

Linda

CrimsonQ66

I am about a month away from getting Tamoxifen and I am terrified.  I am triple+ and understand this is the standard course---but I have made it this far with my head held high, I don't want to be dogged with jumping out of my skin and depression.  OR weight gain.    Does anyone know if simply removing the ovaries is an alternative?  I hate taking pills.  HATE. 

robynkk

Crimson I don't know about removing ovaries but please don't allow my experience or that of anyone else stop you from treatment.  The great majority of people on Tamox, I believe, have no problems at all.  My ONC said my reaction was extremely rare (although I'm not sure I completely agree with that but?).  You can always try it and see if it works.  My reaction was like a brick wall though, I took it for one month with NO problems then woke up one day and it all started. 

Best wishes to you in your journey!!

Robyn

Sherryc

Crimson usually if you remove the ovaries they will want you on an AL.  I had bad SE's the first couple of months but then overnight my body adjusted.  I kept telling my onco I did not think I could live like this and he kept saying give it more time and he was right.

TooManyCocktails

I'm over 50 and postmenopausal and I had a horrible time on Tamoxifen and Arimidex.  I felt like I needed to jump off the Empire State Building (or some tall building that would insure my death).  I went through menopause after having my thyroid removed. I know weird.  I was around 43 when that happened.  I, also, suffer from Panic Disorder so there maybe something to the mental aspect that Travelgal talked about? 

I'm also hypothyroid, have psoriasis, diabetes, parathyroid problems, and have been treated for Vitamin D defiency (my level was around 5 ng/mll last year), CHF, chronic anemia, and other stuff!

I cannot tolerate Tamoxifen or Arimidex.  The both of them make me crazier than a loon!

msphil

Hello all, I think each of us it affects differently, I did have extreme bone pain I get it a little every now and then but bearable, tired, fatigued but no depression, I couldn,t get of bed because I was so very, very tired, I was on Tamoxifen for 5 yrs and I have been cancer free for 17 yrs (Praise the LORD).  it affects us different.  idc, stage 2, 0/3 nodes, chemo, rads, L mast with reconstruction, body rejected the expander a couple weeks later, went to Er with high temp, it was removed now wear prothesis.  God Bless Us All.  msphil

AMP47

Drug Can Reduce Risk of Breast Cancer, Study SaysBy ANDREW POLLACKPublished: June 4, 2011LINKEDINSIGN IN TO E-MAILPRINTREPRINTSSHARECHICAGO — A drug now used to prevent recurrences of breast cancer can also reduce the risk of it occurring in the first place, providing a new option for women at high risk of getting the disease, researchers reported here on Saturday.RelatedHealth Guides: Breast Cancer |Ovarian CancerRelated in OpinionOp-Ed Contributor: Drugs and Profits (May 25, 2011)Two drugs, tamoxifen and raloxifene, are already approved to prevent breast cancer but both are rarely used for that purpose, in part because they can have serious side effects like blood clots. The researchers said the new option, exemestane, does not have those side effects and might be more acceptable.“There’s a very safe therapy that looks highly effective in preventing breast cancer,” Dr. Paul E. Goss, professor of medicine at Harvard and Massachusetts General Hospital, said at a news conference at the annual meeting of the American Society of Clinical Oncology. He was the lead investigator in the study, which was presented at the conference and published online by the New England Journal of Medicine.Exemestane, also known by the brand name Aromasin, is one of a class of compounds known as aromatase inhibitors. These drugs stop the production of estrogen, which fuelstumor growth. They have proven superior to tamoxifen in preventing recurrence of cancerafter a breast tumor is removed.So researchers have long suspected that aromatase inhibitors would also reduce the risk of an initial occurrence of breast cancer, though this is the first big randomized study to demonstrate that.The trial involved 4,560 post-menopausal women in the United States, Canada, France and Spain who were considered to be at a higher than normal risk of developing breast cancer either because of being over at least 60 or other factors. After a follow-up of about three years, 11 women getting the drug had developed invasive breast cancer compared with 32 of the women receiving a placebo. That is a reduction in risk of 65 percent.But in absolute terms, 1.4 percent of women in the placebo group developed cancer compared with about one-half of 1 percent of women taking the drug.About 94 women would have to be treated for three years to prevent one case of breast cancer, Dr. Goss said. In the trial, exemestane side effects were acceptable, he said. But women who took exemestane had more hot flashes and arthritis than those who had the placebo.Still, whether exemestane will catch on where the other drugs have not remains to be seen.Some doctors and patient advocates said that aromatase inhibitors had known side effects like bone pain and joint pain that caused many women who already had had cancer to stop taking them. For healthy women, that would be an even harder sell.“People are going to think very, very hard about it before they are going to take an aromatase inhibitor in this setting,” said Dr. Eric Winer, a breast cancer specialist at the Dana-Farber Cancer Institute in Boston. He noted the study was not designed to show whether women who took exemestane lived longer.Diana Zuckerman, president of the Cancer Prevention and Treatment Fund, a patient education group, said that the results were promising but that women in the study were followed for only three years, too short a period to judge long-term effects from taking the drug.Dr. J. Leonard Lichtenfeld, deputy medical director of the American Cancer Society, said the drugs would be more accepted if there were a way to better predict who was truly at risk of getting breast cancer.Another factor working against broad use is that aromatase inhibitors are now prescribed by oncologists. But for prevention, “They would have to be prescribed by gynecologists and family doctors,” said Dr. George W. Sledge Jr., a breast cancer specialist at Indiana University. “These doctors are not comfortable with these drugs.”Patent protection on the drug expired in April. Generic versions will mean lower prices.But generic competition also means that Pfizer, which sells Aromasin, has little incentive to seek regulatory approval for the drug for preventing breast cancer. The drug could still be available to women off label, but insurers might be reluctant to pay.Pfizer declined to comment on whether it would seek such approval. Pfizer helped pay for the study, and Dr. Goss has received honorariums from the company.Two other studies presented at the conference show that the widely used cancer drugAvastin is effective in delaying the progression of ovarian cancer. But both studies so far have narrowly missed showing that the drug can prolong lives, the ultimate test of a cancer drug. That threatens to embroil the use of Avastin for ovarian cancer in a debate similar to the one surrounding its use in breast cancer.The drug’s manufacturer, Roche, has filed for approval in Europe to market the drug as a treatment for ovarian cancer. But its American subsidiary, Genentech, is still in discussions with the Food and Drug Administration about whether there is enough evidence for an approval. One question is whether it will be necessary to show that the drug prolongs lives, said Dr. Sandra Horning, who runs cancer clinical trials for Genentech. The F.D.A. is now moving to revoke the approval of Avastin for use in treating breast cancer in part because the drug has not prolonged lives in clinical trials. The F.D.A. will hold a hearing on this issue soon.One study presented here involved 484 women whose ovarian cancer had recurred after an initial drug treatment. All received two standard drugs, and half of them also received Avastin.The median time that women lived before their cancer worsened was 12.4 months for those who got Avastin compared with 8.4 months for those who received only the two other drugs.After two years, more women given Avastin were alive, but the difference was not quite statistically significant. Too few women had died to draw conclusions.“It really is not appropriate statistically to say we really know anything about overall survival here,” said Dr. Carol Aghajanian of the Memorial Sloan-Kettering Cancer Center, the lead investigator. The trial was sponsored by Genentech.The other trial, partly paid for by Roche, involved adding Avastin to the standard drugs used as initial therapy. There were 178 deaths in the Avastin arm and 200 among those who got the standard drugs, a finding that narrowly missed statistical significance. However, in a subset of patients considered to be at higher risk of recurrence, there was a statistically significant improvement in survival.A version of this article appeared in print on June 5, 2011, on page A25 of the New York edition with the headline: Drug Offers a Safer Option in Preventing Breast Cancer, Researchers Say.SIGN IN TO E-MAILPRINTREPRINTS Get 50% Off The New York Times & Free All Digital Access.

Pompeed

Well, Good Ladies, I'm going to make another stab at it.  Because I've grown tired of being lectured by the White Coats.  Oncologist, breast surgeon, GYN and GP are all on my case.  They just don't like the statistics if I don't try something else.

So I have to have more surgery (GEEZ, does any of this medical crap ever stop????) at the end of next month to fix up the implant which has gone wonky and get a polyp out of the nether reaches that doesn't belong there.  And that will shut down riding for a month. 

During which told the oncologist I'll get the Rx filled and try it.  But if the reaction with joint and muscle pain and the mental madness is the same as the Tamox, I will be done done and done to the crispy stage. 

At that point it will be just about impossible for anyone to convince me that living miserably now in the hopes that I'll live longer later (and there's no way to prove whether I will or not) is a good deal.

Hope all here are doing well.

Ondagrow

Tamoxifen is the WORSE... THE END... UUUGGGHHH...

Ruth2011

Hi Robyn, How are you now? I stopped T after 7 weeks due to mostly fatigue each day and depression. I don't want to take it. I don't know what to do. I was caught early so maybe I am better off just trying to feel my normal happy self and stay off the drug. any thoughts out there.

kennylynne

I am dazed and confused......... I just went to onc yesterday and they wrote me the script for tamoxifen, I just finished last DD Taxol last Thursday and am still on Herceptin fro 15 more cycles. Rads in Dec and am just so overwhelmed right now. I have not started the tamoxifen thought I would start Sunday night as I really wanted to feel better from last chemo before I started it I am so scared of the SE's. Not sure what to do........ does anybody feel normal on Tamoxifen????

robynkk

kennylynne a lot of people do well on tamox.  I went in thinking I would be fine, my dr. told me of possible mild side effects and I took it for a month with NO problems, I thought wow this is a breeze then BOOM it hit me one day hard and I didn't get out of bed for 2 weeks, literally didn't get out of bed for 2 weeks.  I think my family had to make me get up to take a shower once every few days.  I wanted to die.  I can't describe the feeling I had but I know I now refuse to take anything.  My dr. is keeping a close eye on me, sees me every 3 months for blood work, scans, etc. I just figured QUALITY of life has got to figure into this a little more than QUANTITY but that depends on how much time and chance you're talking about.  My dr. told me going off only increased my chance of reoccurance by about 6%, those figures were fine with me. 

I pray for all of you, this time last year my life was pretty misreable and I'm donig great now, off of all medication (except for my thyroid meds). 

Best wishes to all  of you.  Listen to your body, you're in charge! xxoo

ALittleBitBritish

Kennylynne,

I do feel normal on tamoxifen - been on it since May this year.

I was really worried at first, but I take it before bed each night and so far so good  I had a number of nights waking up hot, and a cramp in my foot and calf sometimes. But that is about all.

Ali 

cycle-path

kennylynne -- I'm absolutely not a medical professional, but it seems to me it's a good idea to get onesself to a point where one is feeling pretty decent before starting a new medication. For one thing, it allows you to really know what's a side effect of what. You might want to talk to your doctor about delaying for a while.

That being said, as a lot of others here have related, some people do very well on Tamoxifen. And you might be one of them! 

kennylynne

Thank you so much ladies I so wish this ride was over! Happy Thanksgiving to my US nieghbours.

christina1961

I am supposed to start tamoxifen in February after my clinical trial with chemo ends.  I hope I don't get side effects from it.  I did take arimidex for about a month and had some joint pain (but I still have it so I really think it might be from the TAC I had Feb - June) and seemed a little tired, but no other side effects.  I was actually supposed to be on tamoxifen but my oncologist forgot I was premenopausal pre chemo that's why I took the arimidex. 

So - if I have problems with tamox, I may see about removing my ovaries and taking an AI although I would rather have a couple years on tamox and switch so I won't lose the bone density.

cycle-path

BTW, kennylynne, another thing that's been discussed here on BCO is side effects that occur with one manufacturer's Tamoxifen which don't occur with the pills from another manufacturer. 

The original patent on Tamoxifen has run out so all the pills are (I believe) now generic. While the drug is the same for each, there may be coatings or supposed "inactive ingredients" that differ from manufacturer to manufacturer. There seems to be some anecdotal evidence that any given woman may experience SEs on one but not on another. So if you get bad effects from one, see about switching to another. Doing this might require some effort, but it's worth a try.

robynkk

The side effects I had were so bad there was no way I would chance taking another manufacturers, I hadn't heard of that but it might be an option for some people.  I was angry that my Dr. didn't TELL me the possible side effects could be so severe.  I have never even experienced depression in my life and it wasn't JUST depression, I was suicidal!  I was healthy, in shape, not taking other meds so it was obviously the tamox, when it finally got out of my system I was fine.  I pray for all the women that are going thru the se's! 

Linda-n3

Robynkk, I sent you a PM.

robynkk

Got it Linda thank you!

 Can't believe it's been a  year since I had that awful experience with Tamox.  I go in 2 weeks for my 3 month scans/tests, am nervous.  So weird that every time I feel a little pain or anything I think "it's back", I don't say anything to my family but I hate being so nervous all the time.  I need to be grateful that I am healthy, I am!  Here's hoping a good 2012 to all of you with clean scans!!! xxoo