No Tamoxifen and recurrence (?)

Anonymous

BarbaraA  ~  Thanks for the link about Tomoxifen.  I've been on it since Nov after my onc switched me from Arimidex because of the severe bone and joint pain I got from Arimidex, as well as vaginal atrophy.  So started Tomoxifen and I have been totally miserable on it during the last 2 months.  I'm more snarly and grouchy, feel very tired and moody.  The most frustratin symptoms are the severe leg pain and foot pain and heaviness feeling in the backs of my legs.  I feel like they are swelling with edema and are very achy and I hate this SE. I'm calling my onc on Monday.  I noticed in the link it mentioned the risk of blood clots and phlebitis in the back of the legs.  I have been really suffering with this pain.  I didn't ahve this with armidex.  I want to g et off this drug seriously!

Barb

Pennythoughts

hillck - Had my appt with the naturopath yesterday.  Once he took my history, he suspects that due to my lifelong problems with "irregularity", that I am not/have never metabolized estrogen properly.  He says that when the colon sits too long without a proper movement, the body begins to reabsorb toxins and yes, also hormones, back into the system.  I had no idea that a lot of estrogen can be re-absorbed back into the body through the bowels.  Who woulda thunk?

In any case, he wants me to keep a food diary and complete a toxin questionnaire.  Also gave me some info about some of the supplements I should be on and the food I should be eating.  Basically everything you've ever heard about healthy eating . . . low glycemic index foods, lots of fresh veggies (esp. broccoli, cabbage, cauliflower), purple grapes, lots of fibre, lots of water, no alcohol, no caffeine.

He is surprised that I have not had endometriosis or fibroid cysts on the ovaries, as women who have this problem often have those as well as being at higher risk for breast cancer. But I have had bad PMS, and a lot of period pain in years gone by.  And fibro cystic breasts, which he is not at all surprised about.

He ordered lots of blood tests that most doctors don't order and is checking my Vit. D levels.  I think this is going to be a longer, slower process, which the natural way usually is.  He is not suggesting I don't take the Tamox or Effexor, but says we can work towards getting off the Effexor eventually.

So . . . I guess I will just continue with all my regular treatments and keep seeing him and trying to put into practice what he tells me.

karenmarie1

I did not take Tamoxifen, even tho I was supposed to. When I was first dx'd in 2001,  I had 6 rounds of chemo and 5 wks of radiation for stage 2b breast cancer. I was sick of being sick and could not take five more years of side effects. I had a recurrence january 2010 and I am now on Aromasin. I still would make the same decision today if I had it to do again.

jillyG

I am pretty shocked by the statement "but the idea of taking Tamox scares me to death, way more than the cancer coming back."

REALLY?????  That is very unusual.  I can guarantee you getting cancer again would feel alot worse than any side effects you may get from Tamoxifen. 

What about trying it and seeing what effect it has on you and making your decision from there?  I have been on it for 2 years and no problems at all. 

Good luck in whatever you decide.

Tankweti

Micrometastases hide in the bone marrow right from the beginning and likely before your first diagnosis. Before you even knew you had breast cancer. What I found interesting is that,  simultaneous to your Stage 4 diagnosis, you had negative nodes. This means that the micromets started up in your bone marrow. Something triggered them. No one really knows how that works. However I have been doing a lot of reading lately about receptors and signaling pathways. It turns out there are many more players  in this game than the estrogen receptor. However the estrogen receptor is the onlyone that there are meds for. They have nothing to stop the rest of the process. 

B1016

This thread is old, but I am at a crossroads too with Tamoxifen (I took it for 12 days and side effects were so brutal i couldn't continue). This was after Femara for 6 weeks - also severe side effects and couldn't continue. I won't take antidepressants - I'm seeing that many get through the side effects with multiple meds - I am very sensitive to medications so it's not a workable solution. I wish there was more accurate statistics to make a truly informed decision.

dtad

B1016....unfortunatley there are no studies on those of us that refuse anti hormone therapy. I also don't believe there ever will be. Who would pay for it? Certainly not a drug company! We need better treatment options so the compliance rate is higher. Good luck to all navigating this disease.

tgtg

B1016--As you can see below, I totally rejected hormonal therapy from the beginning, for a number of reasons, related both to the risk/benefit ratio for someone of my age and tumor stats, and also because I am old enough to remember what happened to the first-generation users of hormonal birth control (in the 60's). I saw the inadequacy of the testing for "long-term" effects of the Pill--i.e., I saw how many women experienced serious medical issues after more than the 5-year (so-called "long-term") period evaluated. And like you, I refuse to use a second drug to eliminate the effects of the first one! I just passed my 4-year mark and, according to the surgeon and rad onc following me, am doing just fine by maintaining a healthy weight, limiting sugar and fats, exercising vigorously and faithfully, and enjoying life (laughing a lot more than before breast cancer and not seating the small things).

I raised the same question about research data about us with my radiation oncologist, and she said that we "refuse-niks" are indeed recorded in the national cancer database, even though we are a minority and less visible than those who quit early, while under an MO's care. I also voiced the same cynicism that dtad expressed above about drug companies' opposition to funding this research because they certainly don't want to shoot themselves in their budgetary foot , , , or pocketbook (as if their top execs don't already rake in enough money). She agreed with that logic, by the way. I also harbor a suspicion that some med oncs may see sustained use of anti-hormonals by patients as a kind of cash cow to pay off med school loans, since a 5- or 10-year treatment plan brings women in 2 to 4 times a year, for a simple, quick (and reimbursed) appointment.

As for research, in 2013, soon after my rads ended, I came across research (done by researchers at U Michigan and, I think, Harvard, and not funded by big pharma) that shows that cancer cells become resistant to tamoxifen and "get around it" and become even stronger, in much the same way that our cells become resistant to antibiotics. They advised caution about using anti-hormonals for small, early-stage cases. This phenomenon that they observed may indeed be related to the recent push to keep women on an anti-hormonal for an additional 5 years.

Just this week, I read a journal article about the long-term effects of AI's--done at NIH/NCI and funded by NIH. Unfortunately, I can't put my finger on where I saved this report, but the gist is that women treated with AI's faced significant, non-cancer-related, ailments as a belated result of the treatment. I will continue to locate the article and send you a link to it if/when I find it. In the meantime, here's a link to a 2012 article by two Scots, which seeks to explain the resistance phenomenon:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3496110/

Good luck with your decision--it is a difficult and highly personal one, and no two reasons for, or solutions to, this dilemma are alike. TG

Bethane

Be careful of anti depressants. Paxil (SSRI's ) and Elmiron are now being linked to Estrogen Receptor Positive breast cancer. There is currently a lawsuit pending. I am also choosing not to take Tamoxifen due to short and long term side effects.

Bethane

Tamoxifen related to Fatal Ovarian Cancer

MelissaDallas

Bethane, the increased risk of ovarian cancer with Tamoxifen is approximately only 1%, or barely statistically significant.

BarredOwl

I am not aware of a reported increased risk of ovarian cancer with Tamoxifen.

The FDA label for NOLVADEX (Tamoxifen citrate) highlights the following severe adverse effects: "uterine malignancies, stroke and pulmonary embolism", and specifically "Endometrial Cancer and Uterine Sarcoma." *****

Ovarian cancer is not considered to be a "uterine malignancy."

If either of you have a link or citation to a clinical trial that demonstrated a statistically significant increase in risk of ovarian cancer in those treated with Tamoxifen as compared with placebo, please share it.

Thanks,

BarredOwl

________

*****The incidence of these is low, but patients should not hesitate to ask their Medical Oncologist about how the incidence compares with the estimated absolute benefit of treatment in their particular case.

dtad

Bethane...did you really mean Elmiron? I take that for interstitial cystitis!

MelissaDallas

Oops. Thank you for catching that Barred Owl. I was thinking uterine and typing ovarian.