Stage 1 Ladies on Tamox Only

SandyinSoCal

Hi sgreenarch,

Louis Zamperini!  My husband worked with Tim Z. at TRW for years. 

I have worked with a nutritionist, and began eating small meals more frequently, usually about 2-300 calories each.  I've changed my diet much like you have, but lately due to being discouraged, it's been tougher to stick to it.  I don't eat much meat (never red meat!) or dairy,  I lost a bit of weight with what the nutritionist taught me, but honestly, I've made big changes in my activiity level and my diet since my diagnosis, and it's so hard just to lose one pound!!    I did stop the Tamoxifen the other night, and so far, feel no different but one woman mentioned that it takes 54 days to be completely gone from your system.  Seems like an awfully long time and that's something I'll ask my onc about on Friday.  Thanks so much for responding.  It's scary making this decision, but I know that losing weight will lower my risk as well. I just hope I can do it---that it's not just due to menopause.

sgreenarch

Sandy. Yes! Louis zamperini! It is a great book. Just came out last yr. Dont remember the title but you can google it; that is the author's name. Cool!

If your onc agrees, go for it re taking a break from tamoxifen. I am kind of scared to do it as i am still perimenopausal and its my only treatment.
Hi, Hope30, too, I think the experience that we are all having re lack of weight loss could be partly hormonal. I havent gained wt since dx but most normal humans would lose wt on my diet and exercise sched. I could use to lose about ten lbs but am close enough to normal wt that i am not obsessing about it. Onc said i dont need to lose wt. It is frustrating but i am trying to just focus on eating healthy and doing lots of exercise. She said upping the exercise could reduce risk of recurrance by 50%. thats huge.



Enjoy torrance! Regards from Israel,

Shari

Rennasus

I can relate to the weight! I lost 5 lbs after BMX but have gained it back. ( I need to lose 15 pounds, so that 5-pound loss was 33% of my goal!) For me, I don't think it's the Tamox as much as it is my reduced activity level since BMX. I still have activity restrictions due to healing issues and am not nearly as active as I was prior to surgery in FEB. So until I can do what I'm used to doing, I have to eat less. (Hard to do when I am home more because I'm not out and about being active!) I am also peri-menopausal so I know my body is adapting to that as well as the Tamox — and that's simply a recipe for a tubby tummy!! ;-)

Bren-2007

Rennasus ... I'm Stage I and I don't take Tamoxifen or an AI.  I had a lumpectomy and radiation, and then I tried Tamoxifen for 6 weeks and Arimidex for one week.  Decided my risk was low and couldn't stand the SE's of either medication.  I had a total hysterectomy a couple of years before my diagnosis.  I've been cancer free for four years now.

Bren

SaraP

Hi,

My diagnosis was High Grade DCIS....less than 1 cm. I opted for MX right breast....verses wide excision and radiation.  But my estrogen/progesteron came back negative...my doctor said that is rare...usually is positve. So I'm not taking anything....I'm not sure if being 'negative' is actually a good thing or not. Aparently Tamox would be of no help. But I'm thinking what if I get cancer in my other breast? I was told another tumor could be E/P+.....its confusing. But my doctor said we will just watch closly. Is there anyone else who has had E/P negative like myself...?

 Love, Sara

Rennasus

BinVA: Yeah on 4 years free of C!

Sara, are you HER2- or HER2+? 

SaraP

Rennasus,

I don't know. I don't think that test was done. My doctor never mentioned it. I have my medical records from the hospital....I'll look at those.

SandyinSoCal

I got the go-ahead from my oncologist today to take the summer off of Tamoxifen and see him again in three months so he can see how much weight I've lost.  If none to little, I'll go back on it. Yippee!!!  Now the pressure is really on!

Rennasus

Sandy, let us know how you feel being off the Tammy. It is validating to hear whether certain SE's are REALLY the wrath of Tammy or not! ;-)

Anonymous

Hi Rennasus!!

I'll chime in on the thread (great idea btw!)  As you can see in my stats..age 43 at dx, premenopausal, 1.4cm IDC ~ grade 3 at biopsy, grade 2 after surgery pathology.  I chose BMX for several reasons (one major one being to avoid radiation). Very high ER/PR+. High Ki67% was dancing on the chemo fence due to my age and aggresiveness of the tumor, but Onc wanted to wait for the oncotype results to make a recommendation.  My Onc specializes in breast cancer and is well respected in my area so I felt comfortable with his recommendation.  It came back 15 (I think he was surprised and thought it would be higher) and said he felt that my weapon of choice would be Tamoxifen and that chemo could do me more harm than good.  He didn't need to twist my arm to agree with him!

Because I am banking so heavily on Tamoxifen to prevent reoccurence I did have the metabolizing test done (even though my Onc said it was irrelavent). I just wanted to have it done for peace of mind.  The results showed that I was an extensive metabilizor so that is good.  I have been on Tamox since February and have no noticeable side effects (runs to knock on wood!).  My Onc does have me getting transvaginal ultrasounds every 6 mos to monitor the ovaries/uterus, and yearly chest MRI's.  

I try to eat healthy and exercise regularily, but don't obsess over it (I do enjoy my glass of wine).  I feel pretty at peace with my decisions so far and just hope for the best.  I don't know what treatment will be in store for me after 5 years of Tamox.  I'm hoping NOTHING ... but I guess I'll cross that road when I get to it.  

Rennasus

Hey Susan! Welcome to our Tammy train! For me, after 2-5 years on Tammy (depends on when I enter and remain in menopause; I am 52), I will then take Arimidex for 5 years.

I am trying to drop 10 pounds but have been curtailed (exercise limitations) due to my delayed healing. It's hard to lose weight by diet alone when I am burning fewer calories from less activity. ERGH! (Oh, the many blessings of BC!)

;-) 

Kalessandri

Hi, I just registered with the community.  I am 32 yrs old at dx and Stage 1B (which I didn't even know existed) IDC.  I had a 0.8 tumor, Grade 1, but with a micrometastes (1mm abnormal cells) in 1 of the 3 lymph nodes removed.  My oncotype score was an 18 which puts me right on the border of low to medium risk.  Chemo was not recommended by either oncologist due to my lower risk of recurrance and small, non-agressive tumor.  I still worry about the micromet, though.  I don't think chemo would have been the right choice for me (I have a weakened immune system due to severe asthma) but at 32 now I worry about the what-ifs of everything.
I have been doing radiation for almost a month now and tamoxifen for almost three weeks and I am pleased to say very few side effects so far.  The fatigue has been a bit much, but I'm trying to stay active as that seems to help a bit.  One thing I worry about a lot is my fertility.  my husband and I are newly married and were just about to start trying for a baby when this happened.  Did anyone who is premeno choose to get eggs frozen? 

Rennasus

Kalessandri, welcome! I know there are women on the boards who have frozen their eggs, try a search for those key words and see what you find. It's hard to deal with this BC stuff while still a newlywed. I've only been married three years myself. Good luck to you! 

My husband (a pharmacist) just sent me an article originally published in The Lancet Oncology that I am going to talk to my onco about; the study couples the osteoporosis drug Zometa with early-stage women on Tamoxifen (or Arimidex) and they've seen a dramatic reduction in recurrance rate —  32%. That is worth me looking into. Here's the article:

FRIDAY, June 3 (HealthDay News) -- Early stage breast cancer patients can see their chances of the cancer's return drop by 32 percent when the osteoporosis drug Zometa is added to regular hormone therapy for three years after surgery, Austrian researchers report.

Women undergoing hormone treatment for breast cancer are prone to develop osteoporosis, so they are usually given a bisphosphonate such as Zometa (zoledronic acid), to build bone strength. However, Zometa appears to have the additional benefit of reducing the risk of cancer recurrence, according to Dr. Otis Brawley, chief medical officer for the American Cancer Society.

"Aromatase inhibitors [like Arimidex] cause osteoporosis, and you must put a patient who is being put on an aromatase inhibitor on some type of osteoporosis preventive therapy," Brawley said. "This study says that putting a patient on Zometa may have even a bigger bang for the buck than the prevention of osteoporosis."
Although exactly how Zometa reduces the risk of recurrence isn't known, lead researcher Dr. Michael Gnant, a professor of surgery at the Medical University of Vienna, said he thinks "it prohibits dormant tumor cells in the bone marrow from 'waking up.'"

"Zometa actually hardens the bone and makes it more difficult for the cancer to actually implant," Brawley added.

The report was published in the June 4 online edition of The Lancet Oncology to coincide with the American Society of Clinical Oncology's annual meeting in Chicago, where the findings were to be presented Friday.
For the study, Gnant's team enrolled 1,803 premenopausal women with early-stage hormone-receptive breast cancer. The trial was funded by drug makers AstraZeneca and Novartis.

The women were randomly assigned to tamoxifen alone, tamoxifen plus Zometa, Arimidex (anastrozole) or Arimidex plus Zometa. Zometa infusions were given every six months during the three years of the trial.

The choice of hormone drugs is important, because while Arimidex is associated with a risk of developing osteoporosis, tamoxifen isn't. So women prescribed tamoxifen would not usually be given an osteoporosis drug, Brawley explained.

In 2009, after four years of follow-up, the researchers reported women receiving Zometa had a 36 percent reduction in the risk of a recurrence of breast cancer, compared with women not on the drug. There were also indications that Zometa extended overall survival, the researchers said.

The current report looks at more than five years of follow-up, which is more than two years after treatment with Zometa was stopped.

The researchers found that women receiving Zometa had substantially better disease-free survival (92 percent) than women receiving hormone therapy alone (88 percent). This is a 32 percent reduction in the risk of a recurrence of breast cancer among those who had received Zometa, they noted.

These results were seen among women taking either tamoxifen or Arimidex plus Zometa. However, overall survival was worse among women receiving Arimidex, they added.

The effect of Zometa was even more pronounced in women over 40, where the risk of the cancer's recurrence was cut by 42 percent.

In addition, Zometa was associated with a reduction in cancers developing in bone and other sites as well as breast cancer in the breast where cancer was found and in the unaffected breast, Gnant's group found.

The researchers added that Zometa was well-tolerated and side effects, which included joint pain, bone pain and fever, were relatively mild. There were also no cases of osteonecrosis of the jaw (death of bone in the jaw), which Zometa has been linked to when the drug is given for osteoporosis after major dental work, Brawley noted.
This study showed that "disease-free survival increased, it's not powered for overall survival," Brawley said. "There have been recent studies where disease-free survival was increased, but ultimately overall survival was not."

"This is something to consider," Brawley said. "I never change my practice based on one trial. But, I see very little harm in giving Zometa along with aromatase inhibitors. Many of the patients I take care of already get this anyway," he added.

sgreenarch

Hi guys. Rennasus, i am confused. ZOmeta was prescribed for me in sept and i had my first dose in november. Now i am due to get my second biannual dose. Report came out in december that disputed the original zometa study showing benefits. My onc said to keep taking it anyway but i know of other oncs who stopped prescrbing it. Is your study new, since december?

Thanks, shari

TwoHobbies

Susans Garden, I'm curious as to why your onc said the metabolizing test was unnecessary. 

Rennasus, I saw this, too and will ask about it at my next appointment.  Sgreenarch, I can't find any study from December or thereabouts showing no benefits.  I wonder what that was.  All I see is a study from Univ of Wis in which there was insufficent events to report on disease free survival or overall survival.  Perhaps its the argument about disease free survival vs overall survival.  This latest study just released seems to be an update on the 2009 study - 62 months versus 40-somthing, and the trend toward disease free survival is improved.  There seems to be some question on overall survival, although disease free survival seems to be significant.  Let us know if you find out more info.

All:  Even without tamoxifen I have found it very difficult to lose weight in these perimenopausal years.  If I exercise an hour, I'm so hungry I overeat for a day and a half.  when I was younger, this didn't happen.  I did an hour or more of exercise 3 days a week for a year and I only lost 3 pounds the whole year.  So if anyone finds the answer, I'd love to hear.  I'm technically not overweight but my BMI is at the top of normal and I'd love to lose 10 or even 15 pounds to be more in the mid-range.. 

Rennasus

Shari, I found an article on the topic in the New England Journal of Medicine dated Feb 2010 (http://www.nejm.org/doi/full/10.1056/NEJMoa0806285)

The clinical trial is still ongoing (it ends in 2013); so the above are preliminary results. But encouraging enough that I want to talk to my onc about it.

Twohobbies, I hear you on the weight thing. Even perimenopausal women that I know who work out with weights and do cardio 6 days a week have developed extra fat in the tummy area.

The secret is: eat less than we are used to, and work out more than we are used to. And I am not used to doing that! ;-)

beckyp

I was diagnosed in January with stage 1 invasive ductal, then had a lumpectomy where they found another small lobular in a different area so mastectomy was suggested.  Decided to do a bilateral in April with reconstruction.   Will have exchange surgery done in  6 weeks or so, which will make sleeping more comfortable!   Oncotype was 12 so no chemo.  Had sentinel node biopsies on both sides and nothing in lymph nodes.  Started tamoxifen 10 days ago and still waiting for hotflashes.  I'm 50 and premenopausal.  Oncologist said if I don't have hot flashes within 3 weeks the drug is not working and they will have to look for another.  The only thing I've noticed so far is a little nausea, but not sure if it's related.  Has everyone experienced hot flashes and is that what others have hear that's how you tell? 

Panmars

Hi Ladies! I had IDC, right breast, stage 1, grade 2, Onco type score of 8. Lumpectomy, one node, which was clear. Did 6 1/2 weeks radiation, and have been on Tamoxifen for 3 months now. I have not had too many hot flashes and no joint pain yet. Did have some leg cramping, but that seems to be gone now. However, 8 weeks into the tamox, my belly became very round and distended, just before my period, which did not come until last week. I've always been thin, eat right, and walk 5 miles a day. I also feel very full, as if I've eaten a large meal. Saw my MO last week, and she ordered a CT of my abdomen and pelvis. I should have results tomorrow. I just don't know what to make of it. I've read that this is common, so I suppose it is what it is. Like Rennasus, I feel a sense of security knowing that if any BC cells remain, the tamox will make sure it does not have a chance of causing future problems. 

Rennasus

BeckyP: Any hot flashes yet?

Panmars:  How did your CT turn out?

Panmars

Rennasus, CT was normal. Back when they did the set up CT for my rads, they saw a 6mm spot in my lung. The RO said it was probably just a granuloma. And sure enough, in this last scan, it's no longer visible. Yay! And as far as my bloated belly, well.....just a side effect I'll have to deal with. My MO gave me a clean bill of health. Which is good, because in 2 weeks I'll be in Hawaii! A belated 20th wedding anniversary trip. Can't wait. Hope everyone out there is enjoying summer!

Rennasus

Panmars, that's terrific news. YAY!! (I hear ya on the bloated belly...very unpleasant Tamox SE.)

Have a great time in Hawaii !!!

Rennasus

No action on this thread lately, just checking in to see how everyone is doing!

Panmars

Doing pretty good, except went to my PCP yesterday because of a sudden sharp pain that occurred in my lower left abdomen. I thought I pulled or even tore a muscle ( it was VERY painful ). He did a very thorough exam, and he thinks I ruptured an ovarian cyst. Great. I was prone to them when I was a teen and in my early 20's, but I don't think I've had one since. I do know that Tamo can stimulate the ovaries more, which can lead to more cysts. Perhaps just another SE of tamo. Hope it's not a frequent problem. I haven't been able to do much more then sit since it happened on Wednesday. If it doesn't improve by Monday, they'll do a ultrasound. In the meantime, looks like DH will have to mow the lawn ( for a change! )

Rennasus

Oh Geez! Hopefully it's just a cyst and will resolve itself soon. Any reason for DH to mow the lawn (instead of you) is a good one in my book! Feel better.

NoMoreHL

Is dry, scaly skin an se of Tamoxifen? I have always had somewhat dry skin, but now I am almost shedding! It is especially bad on my arms.

Panmars

Yes, but not a direct SE. The skin changes are from lack of estrogen, or in this case, your body's inability to use the estrogen because of the tamoxifen. The thing I have noticed the most since I've been on it is skin changes. Drier, more age spots. Yippy. I have changed my skin care regimen and it is starting to help. I use a ton of moisturizer and sunscreen now. And I started drinking more water, and that may be helping too. 

Sherryc

I use organic cold pressed coconut oil and love it.  It is solid but melts as soon as you rub in into your hands and you can use it all over.

Panmars

Sherryc, that sounds wonderful! Any particular brand and where do you get it?

mommichelle

Ladies,

I have been on tamoxifen for about 8 months and have belly bloat that sometimes comes and goes.  The onc said it could be lymph fluid (I only really feel it on the mastectomy side which also happens to be the side of my liver).  Have you ever heard it being lymph fluid (tends to get worse with exercise - bonus for me when I am tring to loose about 15 pounds)?  Is it documented somewhere that tamox can cause this too?  I have tried not to get freaked out about the discomfort (not painful, just uncomfortable) but my mind goes to dark places sometimes     Glad to hear that I am not the only one with this symptom, sad that any of us have it.

Michelle

Panmars

mommichelle, I too get the belly bloat that comes and goes. Never heard that it could be lymph fluid. My MO doesn't think it's from the tamo, but I disagree. My bloat was so bad a few months ago, though, that my MO ordered a CT of my chest and abdomen. Nothing. Everything looked fine. Lately when I get bloated, it's not as bad. I don't have that tight uncomfortable feeling with it. I've been on tamo 5 months now, so maybe it's getting better? I can hope.