Aromatase Therapy Timing Key in Breast Cancer Survival

Just starting year 3 on anastrozole.  Have developed osteopenia, so don't know how long I'll last on it......

I noticed that the studies did not say if the hormone positive, early stage BC patients had total mastectomies or just lumectomies. I would think this factor makes a major difference in long-term outcomes on any treatment. Anyone have medical studies on this?

I was curious if those who have developed osteopenia had ever had a DEXA scan before starting on an AL and if so was your bone density ok then?

My bone density was fine two years ago (from this past fall).  I had a full hysterectomy 4 years ago and took some sort of AI for a total of 12 months.I now have osteopeonia. I will be starting Tamox. soon but am taking a short break.

No one knows the long term effects of the AI's.  They are only about 7 years old.  It will take decades...

Back to what motherofpatient asked- good question. I had a bilateral mastectomy. The AI is supposed to reduce chance of "distant recurrence" as I understand it. (bones, brain, lungs are most likely.) The major mastectomy is supposed to reduce chance by by about 90% of breast recurrence or new primary in same or other breast. The AIs are strongly recommended if you are even 5% ER positive,according to my MO.

I still don't know how I feel about this. The aches and pains (arthralgia) and pain in limb (in my case, arm) are kicking in majorly in Month 3 on Aromasin just as they did on Arimidex Month 3. It makes me not want to use my arms much. It is limiting. You should see me picking up the newspaper off the drivewayin the morning!! So I have a total of 6 mos on now. Oh, and if you had one of the taxanes in chemo (I had Taxotere) you are MORE likely to have these reactions to AIs. Makes me grumpy. Will go walk the dog!!

Yes, I am with you on the UGH reaction. I know it is better than getting cancer again, so I will try to stick with it- and it darn well better work.

I took the Arimedex- fine the first 2 mos, then couldn't bend down to pick up newspaper in the morning. Better as day progressed. Was changed to Aromasin. OK the first 2 mos. Just finished 3rd month, been difficult all month. One arm in particular, lower back, etc. Better as day progresses but I am starting to want to limit what I do, afraid it will make it worse. "Arthralgia." about 40-50% women get it with the AIs. My sister didn't. lucky her! Don't know what to do... this 6 mos has been a drag.

i totally get it, Gingerbrew. today I told my Dh that I didn't feel this achey and bad during chemo! My back never hurt during treatment! It gets better over the day, but I am taking advil night and day. My MO suggested it. Can that be good for me? Today we went shopping and I couldn't decide on shoes, bowls, or shirts. Just seemed like too much! I AM in the middle of a cold with cough and sneezes so I'm sure that is another load of yuck to my spirits. But I am thinking about this too. And trying not to be jealous of women who don't have these SEs from AIs.

Hi Doxie and folks,

I have been thinking of upping my dose of vit D (1000 currently) to possibly help with bone loss and stiffness. I wondered how much you take? I also know you after flow research so are there any good studies on Vit D and reduction in bone loss or arthritis?



Gingerbrew and Lisa,

I can relate to how you feel. Some days are a real struggle. I had terrible arthritis on Arimidex ( which I stuck for a year and a half) Then I switched to Aromasin which has been much kinder, although after 9 mos, my stiffness is really ratcheting up.

My onc wants me to consider switching to tamoxifen now ( at 2.5years) because the latest studies suggest that the best overall survival stats are still those who take both AIs and tamoxifen. ( lower recurrence of Cameron AIs, but not overall survival )

I do think this is a hard journey and each of us have to makeover own personal decisions about what is best.

I know when I feel lowest is when my pain is the worst ( I have 3 herniated disks in my neck that the arthritis from AIs make much worse) When I get to that point where I strart to cry ( full on pity party and frustration), I have a deal with my onc and myself I can take pain pills for a few days to give me a break. I also take Diazapam, an anti- anxiety pill that also reduces muscle spasms.

I know that exercise is key too ( even if I don't always do it). The posts from Claire in Seattle who bikerides like the wind remind me that you can mask the AI pain with muscle pain from working out ...lol.

I also find it empowering ( and distracting) to play with my diet. I recently cut out mot dairy and my pain has definely diminished. I didn't gain any weight while on Ariimidex but have packed on 12 pounds on Aromasin in only 9 months ...wth?

Anyway, I really appreciate this site -it keeps me going and helps me stay positive.

I have learned a lot from others about how to cope, plus a nice dose of sympathy is better than a trip to the doctor any day. Hang in there.

Best, Beau

beau,

I take Vit D3 4,000ui, not counting food sources.  I doubled it after the last Vit D test showed I was in the low 50s about a year ago.  Not sure if I'll have another test when I see the MO again.  Make sure you get Vit D that is USP tested and verified.  Someone posted a research article saying that tests of Vit D brands contained much less than stated on the bottles.  The USP certified ones were fairly accurate.  You don't have to pay big $ for these.  The "natural" Vit D I get is in the usual drug and box stores, and not expensive.

Does it help with joint pain?  Mine isn't bad, but I'm not stopping Vit D to find.   I'd get youself tested to see if you are low before taking much more.   I think you want to test in the high 60s or more.  Find out what your number is over someone just telling you it is normal.  

Thank you for the cancermath.net link!  It is most  helpful in putting these numbers into "actual" life-expectancy rather than just cancer.

Sherrie

lisa2012,  

I've not had the VitD range conversation with my MO, but after research and reading what other women have reported from their MOs, I'm trying to get mine into the mid-60s.  Last test was in the 50s.  Still it's better to speak to your MO about this, than follow my lead here.  

Once mine tested at 1 point into normal range (30?).  One visit my NP was "scaring" me into adding my VitD or I would have to come in for weekly 50,000iu infusions. On another visit she saw the "yes" in the chart indicating it was "normal" and didn't say anything.  She is very competent and caring, but rushed and overworked.  "Normal" is not always good enough.

My MO says the only supplement she recommends is Vit D, 2000 IU per day.

I should get my level checked just to see what it is.

After reading the article re: Timing Key in Breast Cancer Survival/Hormal Therapy - what about  Stage 4 cancer? I've been on Aromasin for 16  months, had previously been on Femara (Side Effects were unbearable),  for 6 months. Aromasin not as bad, other than hair is falling out.  All my tumor markers are now below the standard levels, no cancer in any soft tissue or organs (PerScan) Met spot in spine is reducing....does this mean when the spine met goes I can stop the Aromasin?   I also get Xgeva once monthly, in June will go on 3 month intervals, then yearly.  I have perfect bloodwork, scans, tumor markers, I'm really like to stop the Aromasin before I go bald.