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10-06-2008, 11:58 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Sue, Your right...you have seen threads on this topic lately. It's interesting to see that Dr. Clifford Hudis of Sloan Kettering choose this as having one of the most significant impacts in the bc area since 2007.
My last two DEXA scans have not been very good which really concerns me. But three of my doctors don't want to start me on a bisphosphonate. My interest would be zometa since its shown to help prevent recurrance. I have an appointment coming up in two weeks and I plan on pushing this very issue. Maybe I'll take this article along with two others I have. Thanks Sue.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-08-2008, 11:32 PM
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#2
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Senior Member
Join Date: Mar 2006
Location: Mississippi Delta, birthplace of the Blues, across the street from Super Chikan and down from Daddy Rich, with illiamWeejyRogers@myspace is(son),in a multicultural neighborhood ,flat for miles, with fields of cotton,soybeans, turning corn fields town, all musician come here, beside MS River,
Posts: 28
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Kat in the delta
hi Chel...and all,
I have been in a time warp ..and it looks l am near you,CHel, with Time according to the BC. My Onc gave me some Zometa for osteopenia borderline.. But after the 4th (every 3 mos or less) Treatment I asked him to quit. Now I see that it may have helped me....BUT WATCH OUT FOR TEETH, gums....
What else did that MD say or has anyone of your ONCs mentioned exercise or what to eat as a preventative option ?
just wondering,
Kat in the delta
Last edited by katcdale@yahoo.com; 10-08-2008 at 11:33 PM..
Reason: left out words
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10-09-2008, 11:47 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Beth, I was peri-meno when dx. So after finishing chemo my onc insisted I start on an AI verse's Tamox. I wanted to make sure I was really menopausal before starting the AI so I pushed for labs. Both FSH & estradiol showed I was in "chemopause". So I started Femara.
About 3 months afterwards I was concerned because I felt like I was going to get my monthly friend back? So I requested my FSH & estradiol be checked again? When we did...it showed I was right...I was very peri-meno. So I started on zoladex monthly and it barely put me in menopause? So since I had a cyst on one ovary I requested to have it removed and have an ooph at the same time. (figuring with the ooph of course that would put me in menopause!) (NOT!) Well over a yr later labs still say peri-meno. I was checked out by two Endo's...and had a battery of tests and they can't find a reason for it. (My own research says ovarian remants syndrome?)
So then it was decided even though I had an ooph I would go back on zoladex. ARGH! But even with the ooph & zoladex my FSH & estradiol still stay peri-meno.
So regardless of the mess I've been dealing with...I would suggest you request labs to check your FSH and estradiol at least once. I see your young. The ooph probably did it's job for you so I wouldn't worry. Beth...after my ooph I never noticed any changes that one should experience with menopause. No hotflashes, dryness, nothing? That's what made me keep asking to have my labs checked. But there are a few strange things that can keep estrogen running through your body...unusal things like a 3rd ovary and as I mentioned the ovarian remants syndrome. But this is NOT the norm. I am sure your fine. 
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-10-2008, 12:19 AM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Kat, Yes my doctors have mentioned weight bearing exercises and increasing my vitamin D3. My Endo just added 5000 IU's once per wk to my regular amount of D I take. But I'm still concerned that is not near enough. My last labs that checked my vitamin D level was low. (24). Which the lowest it should be for our reference range is 30. I've heard others on her have their doctors add 50.000 IU's. So I'm wondering why I only had 5000 iu's once per wk added? My Endo seems to think adding the vitamin D is going to help my increase my bone density. He just keeps telling me he's working on it while by bones get worse! I just requested a new endo when I went to my primary doc's office this wk. This endo is NOT doing enough for me.
My last two DEXA scans shows a significant decrease in bone density. The most recent scan was pretty worrisome. I am aware of all the possible side affects and especially the osteonecrosis of the jaw. If nothing else I thought I could have a few infusions the first year and see how that goes? Just doing nothing is worrying me.
Kat, you said the zometa may of helped. Did you have a recent DEXA to compare with your first baseline dexa? Are you going to go back on it? And did you have any problems with it after your infusions?
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-10-2008, 11:17 AM
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#5
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Guest
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Kat in the delta
HI,
The Zometa's 1st infusion make me have terrrible flulike symptoms....I did not know about this and neither did my onc. It lasted maybe 4 days.. WIth each infusion it got better... but my gums began to swell and my teeth got loose...so I know my body the best.. so I asked him to quit... I went for a 2nd opinion.... and that onc gives it at most 2x/yr unless it is in your bones..then,,,, you'd get it more often... hang in there....
what are you taking now??
I think the best any one of us can do id to EXERCISE and eat fruit and vegetables daily.. with some added vitamins... but do not get all vitamins from pills. I try to buy Organic whenever I can ...I add juice plus+ from Dr. Kim Dalzell. Look her up and tell her I told you to call her... she doesn't mind... RSVP ....gotta run.. I am 3hrs late for an apt.... Kat in the delta.
ps... not much change but not worse on bone density..... It may have helped me not get it in my BONES!! so you decide..... let me know.. kat
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