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Topic: Good/bad experiences with Prolia?

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Mar 11, 2016 12:16PM

conniehar wrote:

I will most likely be starting Prolia in the next couple weeks. I am 48 with osteo. I have tried Actonel and can't take it and have had two infusions of Reclast and have not gotten any improvements on my scans. The bone loss is getting worse. I exercise often and focus on weight bearing exercises, take Calcium ,Vit D and magnesium. My current endo sent me to another specialist and no one seems to be able to find a cause for my continued bone loss.

I was terrified to take the Reclast due to horror stories I found on-line but I did it and didn't have any side effects. I am now am terrified to take Prolia. When I go to askapatient.com, there are a ton of posts from people with debilitating pain, etc. I have seen a few positive posts on here about Prolia but am still scared. Given my age, I feel like I can't just ignore it, but nothing I am doing is helping.

Thanks!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Mar 11, 2016 12:51PM Jujube43 wrote:

I'm 72 and just had my 2nd Prolia shot due to osteo. I have not experienced any side effects at all..

Dx 8/2/2013, IBC, 6cm+, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 8/19/2013 AC + T (Taxol) Surgery 2/11/2014 Mastectomy: Right Radiation Therapy 3/12/2014 Breast, Lymph nodes Dx 7/11/2014, IBC, Right, 3cm, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Hormonal Therapy 7/12/2014 Femara (letrozole)
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Mar 11, 2016 01:02PM SpecialK wrote:

I am into my third year of Prolia - it has reversed my bone loss and taken me back to normal density with no side effects. I'm a fan

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Mar 11, 2016 03:31PM ICanDoThis wrote:

You have been tested for hyperparathyroidism, havent you?

That was the cause of my pre-menopausal osteoporosis.

For more information, see parathyroid.com


Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Mar 12, 2016 08:52AM conniehar wrote:

Thanks for the positive results. ICanDoThis - I have been tested for hyperparathyroidism a few times. Thanks for the link, though, it was very informative!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Mar 12, 2016 10:38PM Lenn13ka wrote:

Glad someone started this thread. I am about to start Prolia as well. Has anyone had any trouble with blood counts while on this drug ?I am also on Palbociclib and my counts ( #neutrophils and white counts) get pretty low sometimes. I read where this could also be a side effect of Prolia.

OncotypeDX 17 Dx 4/2/2013, <1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2- Surgery 4/18/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/26/2013 Breast, Lymph nodes Hormonal Therapy 6/17/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 2/1/2015 Ibrance (palbociclib) Hormonal Therapy 11/16/2015 Arimidex (anastrozole)
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Mar 15, 2016 08:16PM tuckersmimi wrote:

I took my first Prolia shot today. I too was terrified to take it.
So much so that I cancelled the first appointment that was made for me in December 2015.
Last week when I had my 3 month visit with my oncologist she brought up the subject of rescheduling the appointment.
Well I decided the time had come to just do it. I wanted the appointment ASAP as I didn`t want to talk myself out of it again. Or at least read myself out of taking it, because I have read some horror stories about the drug.:(
Well one week later (today) I was there at appointment time to get the injection.
I must say the stick was hardly felt, even though the nurse was really slow with putting the fluid into the skin. She however told me before hand she would do it slowly so I expected it.
They had me to wait for 30/45 mins. after the injection to check that I would have no reaction. Thankfully I didn`t.
I`m glad the first shot is over and just may be I will not be as terrified to take the next one in September.
The bottom line it was not nearly as bad as I feared.
Wishing you all well that will be taking it soon.

Dx 9/11/2015, IDC, Right, 1cm, Stage IB, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 10/5/2015 Mastectomy: Right Hormonal Therapy 11/8/2015 Arimidex (anastrozole) Surgery
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Mar 16, 2016 04:39PM conniehar wrote:

Thank you for sharing your experience Tuckersmimi - I sure hope you stay side effect free and that it works for you!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Mar 16, 2016 04:48PM ChiSandy wrote:

How were those of you on Medicare able to get Prolia? I have the Part D plan with the largest formulary (Humana Enhanced) as well as the most expensive BCBS supplement, and they are both refusing to cover it at all on Part B or D (not even as a Tier 4 or specialty drug), insisting the only injectable or IV osteo drug they’ll cover is Zometa/Reclast. Prolia is supposedly $5K per shot, twice a year; and even Zometa would likely kick me into the donut hole, from which I wouldn’t emerge in time to get out of and into "catastrophic coverage.” Are you all going out-of-pocket; or since it’s excluded from Part D, getting a co-pay card or coupon (which I am told may be illegal for Part D patients)?

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Mar 16, 2016 04:53PM Jujube43 wrote:

I have only Medicare which paid the 80% they cover...my share was $190...


Dx 8/2/2013, IBC, 6cm+, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 8/19/2013 AC + T (Taxol) Surgery 2/11/2014 Mastectomy: Right Radiation Therapy 3/12/2014 Breast, Lymph nodes Dx 7/11/2014, IBC, Right, 3cm, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Hormonal Therapy 7/12/2014 Femara (letrozole)
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Mar 16, 2016 05:01PM ChiSandy wrote:

Ah, then it’s covered under Part B (not the supplement or Part D)--my MO’s financial office was mistaken (or she probably prefers Zometa and told me Prolia isn’t covered).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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May 3, 2016 11:32AM Ratherbecooking wrote:

I am hoping someone can give me advice on the Prolia injection and fibromyalgia. It is being recommended to me while taking Arimidex since my bone density is decreasing, but I am very concerned that it will cause a spike in fibromyalgia symptoms.

Does anyone here have muscular/skeletal pain issues and has used Prolia successfully or with SE?

Thank you in advance.

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    May 20, 2016 12:47AM Shelly52 wrote:

    I had a prolia shot today at my MO's suggestion. She told me that b cancer likes to move to the bones and that a recent study showed that prolia reduced the risk by 20%. She likened it to adding a protection to your bones to help keep cancer out. I also have osteopenia and she was very clear that this was a good option for me. I have great trust in her so went ahead with it.

    So far no side effects but I'll report back if they show up.

    Best to all.

    Shelly52 Dx 6/9/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 7/22/2015 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 9/10/2015 AC + T (Taxol) Hormonal Therapy 2/20/2016 Femara (letrozole) Hormonal Therapy 3/28/2017 Aromasin (exemestane) Surgery Prophylactic ovary removal
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    May 20, 2016 08:31AM SpecialK wrote:

    rather - I had pre-existing lumbar disk issues, and now have thoracic bone spurs, trochanteric bursitis and torn gluteus medius muscles from an injury - I have been on Prolia for about 3 years, and have found that it has no effect on any of those things. I have experienced a significant amount of joint pain from Femara and Arimidex, but also no worsening on Prolia.

    BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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    May 20, 2016 10:02AM cive wrote:

    Aurora - Have you had a CT scan with contrast, or are you just talking DEXA scan?

    ChiSandy - My medicare advantage plan (Healthnet) has both Prolia/Xgeva and Reclast/Zometa covered under part B, because you have to go to the drs office to get them although they show up on the formulary. I don't yet know the cost because it hasn't cleared my insurance company as of yet and I didn't have to pay the co-pay. Yes, the Center for Medicare Services has changed the rules on charitable organizations providing assistance for copays which hurts those of us requiring expensive medicines for chronic conditions. Wouldn't hurt if you wanted to complain to your House Representative and ask that s/he support HR3742.

    I get Xgeva injections which are just Prolia on steroids (120mg vs 60mg 6 times/year vs 2 times a year) for bone mets. No problem with the injection which takes a few mins because they are injecting it into fat rather than muscle or vein and I've not noticed any side effects as of yet.

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    May 20, 2016 01:02PM conniehar wrote:

    Hi cive -

    I have only had dexa scans. I haven't heard of anyone having a CT scan for osteo.

    Saw my endo this week - latest testing couldn't find any reason for my situation. She said I have high bone turnover and this is caused by some enzyme. Other than meds, the only other plan of attack is the usual calcium, Vit D, exercise. She sent me down the hall for a Prolia shot right away but the nurse wouldn't give it to me until she runs it through my insurance. So, I am waiting to hear about that.

    Good thoughts to everyone going through this!

    Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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    May 21, 2016 10:03AM cive wrote:

    I would suggest that perhaps you discuss getting at least a contrast CT with your MO or PCP because you want to know that the osteopenia/osteoporosis is just that and not something else if it doesn't seem to be resolving itself by doing all the right things. And I wouldn't worry about the Prolia, my Xgeva is generally a piece of cake.

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    May 21, 2016 02:33PM KayaRose wrote:

    thanks to all for replying to this post. I'm scheduled for my first Prolia shot in June. I am having some dental work done and was advised to hold off on Prolia until the work was completed. I am on Medicare and my MO had to get prior approval to ensure it would be covered. Did not seem difficult to obtain the approval. Can't say I'm looking forward to it but waspleased when I heard it may help prevent a spread to the bones.

    Dx 9/4/2014, ILC, Left, 5cm, Stage IIIA, 1/14 nodes, ER+/PR+, HER2- Chemotherapy 9/24/2014 AC + T (Taxol) Surgery 3/2/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/31/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/2/2015 Arimidex (anastrozole) Surgery 7/17/2017 Prophylactic mastectomy: Right
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    May 28, 2016 03:43AM Rufhewn wrote:

    Hi, I've had two Prolia shots and due for a third, No side effects whatsoever and having been diagnosed with osteopenia as well as taking Arimidex, I am thankful this drug is available to reduce further bone loss.

    Dx 6/20/2014, IDC, Right, 5cm, Stage IIA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 7/9/2014 Herceptin (trastuzumab) Chemotherapy 7/9/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/10/2014 Perjeta (pertuzumab) Hormonal Therapy 12/31/2014 Arimidex (anastrozole) Radiation Therapy 1/26/2015 Whole-breast: Breast Hormonal Therapy Surgery Lumpectomy
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    Jun 7, 2016 02:18PM GeorgieGirlKC wrote:

    So glad to see this post and thread started. I was in osteoporosis when I started chemo then radiation. When I had my post treatment DEXA I had osteoporosis in spine and hips. I started a once a week pill to help with the problem but did not tolerate the side effects. I took my first Prolia shot this spring and have not noticed a change in my physical status. Plus exciting about the research about Prolia having a side benefit of helping to prevent mets to the bones. Best of luck to everyone in their journey with this.

    Dx 7/2013, IDC, 3cm, Stage IIB, Grade 3, 2/18 nodes, ER+/PR+, HER2- (FISH) Dx 7/16/2013, IDC Chemotherapy 7/31/2013 AC + T (Taxol) Surgery 12/9/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 1/12/2014 Breast, Lymph nodes Hormonal Therapy 3/16/2014 Femara (letrozole) Surgery 5/4/2014 Reconstruction (right): DIEP flap Surgery 8/14/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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    Jun 10, 2016 05:28PM JoniB wrote:

    I had osteopenia prior to starting AI and my MO recommended Prolia. I plan on agreeing to this. How many shots do people usually get? Is it every 6 months for life or is there a finite time limit? Thank you!

    Two time breast cancer survivor. Recurrence after 8 years. First time 3 mm ER-, PR-, HER2+. Recurrence 4mm - triple positive.
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    Jun 12, 2016 11:57PM - edited Jun 12, 2016 11:57PM by Shelly52

    Hi JoniB, I was told 4 prolia shots, 6 months apart. Others


    Shelly52 Dx 6/9/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 7/22/2015 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 9/10/2015 AC + T (Taxol) Hormonal Therapy 2/20/2016 Femara (letrozole) Hormonal Therapy 3/28/2017 Aromasin (exemestane) Surgery Prophylactic ovary removal
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    Jun 17, 2016 10:20PM cajunqueen15 wrote:

    I had my first injection today. I have early osteopenia and personally feel that it will help prevent bone mets (my MO said there is no consensus on that yet, some research says yes, some says no). I am having a mercury filling replaced 3 months in which I'm a little nervous about but I'm going to be taking this for a long time and need a lot of work over the years and figured I'd just roll the dice (no extractions planned at all).

    I'm getting shots every 6 months for the indefinite future. Most likely because I'm so young and am taking Arimidex and already have osteopenia.

    35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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    Jun 17, 2016 10:49PM ChiSandy wrote:

    There is no danger from mercury fillings--they do not give you cancer or mercury poisoning. However, they are soft (can fracture and require re-restorations), and plug-ugly. Tooth-colored acrylics have come a very, very long way in terms of function, durability, and looks.

    Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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    Jun 18, 2016 09:58PM - edited Jun 18, 2016 09:59PM by cajunqueen15

    I'm kind of a special case. Its my back molar and grind my teeth excessively, so I likely am releasing some mercury. But the more pressing issue is my tooth has darkened and if there is a problem other than staining, it can't be seen by xray due to the mercury.

    35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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    Jun 20, 2016 10:30AM conniehar wrote:

    Thank you for all of the responses to my post. I started this thread in March but just received my first injection today. I hoping I will be side effect free! I hope everyone that has received the shot recently is doing well.


    Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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    Jun 20, 2016 08:34PM cajunqueen15 wrote:

    I should not have googled ONJ.

    35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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    Jun 20, 2016 11:22PM Shelly52 wrote:

    I don't know what ONJ is but I'll be sure not to google it.

    Shelly52 Dx 6/9/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 7/22/2015 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 9/10/2015 AC + T (Taxol) Hormonal Therapy 2/20/2016 Femara (letrozole) Hormonal Therapy 3/28/2017 Aromasin (exemestane) Surgery Prophylactic ovary removal
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    Jun 20, 2016 11:27PM SpecialK wrote:

    ONJ is osteonecrosis of the jaw, a potential side effect of Prolia (denosumab), but is rare in the 60mg dosage given. It is more common in the higher dosage, more frequently administered, Xgeva which is given for existing bone mets, or bone cancer.

    BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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    Jun 21, 2016 01:22AM ChiSandy wrote:

    ONJ is also a rare side effect of Zometa/Reclast infusions as well. My dentist told me that whichever option I choose, to have all invasive dental work (extractions, root canal, implants, deep root planing) completed 6 wks-2 mos. before each shot or infusion (and to wait an equal length of time after the bone drugs for any additional invasive dental work).

    Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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    Jun 21, 2016 01:55AM smo23915 wrote:

    Special K do you know how long one could stay on the Prolia injections? How many injections have you had?

    Sharon

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