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Topic: Reclast Anyone?

Forum: Bone Health and Bone Loss —

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

Posted on: Jun 15, 2011 04:39AM

susand wrote:

Thank you for starting this new forum!  I have a question about bisphosphonates.  I started BC treatment at 42.  Since chemo I have had an oophorectamy and am now taking Aromasin.  I have had 16.5% bone loss in 2 years since my baseline dexa!!  I am shocked.  I exercise and eat well.  I am unable to take bisphosphonates orally due to problems they can cause in the esophagus.  I saw my oncologist today and she wants me to stay on the aromasin but start with Reclast administered intravenously once a year.  Does anyone have any experience with this drug or anything similar?  I am nervous about taking it (jaw issues etc..) and I nervous about not taking it too!  Thanks. 

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Jun 15, 2011 05:54AM susand wrote:

Its me again!  I spent the last 45 minutes researching Reclast and I went from being a little nervous to being terrified!  There are so many complaints.  Please, if anyone has any experience either good or bad could you share?  I hate that I have osteoporosis at 44 and would like to help prevent future damage but sometimes I am afraid of doing more harm than good. 

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Jun 15, 2011 07:16AM suemed8749 wrote:

Hi Susand - I'm 57, and I've had two yearly doses of Reclast now with no problems. Like you, I had problems with oral biophosphonates (hoarseness) plus I wanted the protection from bone mets that I believed the zolendric (sp?) acid would provide (although new studies seem to debunk that.) I'm nervous, also, about the necrosis of the jaw but I haven't had any trouble. And my bone mass improved a little in the year between the first and second dose.

SO many different views/opinions/ideas about this issue. Some doctors don't treat osteopenia, others do. It's certainly not an area with a definitive answer.

Wishing you the best, whatever your decision - Sue

Dx 1/15/2008, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Jun 15, 2011 08:45AM susand wrote:

Thank you Sue.  I am glad you haven't had any problems with your Reclast infusions.  I think if I had osteopenia I would refuse it but my T score was very low and I am definitely in the osteoporosis category.  I am really nervous about it.  Last summer I had a terrible allergic reaction to an antibiotic. (levaquin) and it took several months for the side effects to go away.  That was the first time I had a reaction to a drug and it was scary.  Its such a guessing game and I wish there was more research.  I sometimes feel like if my cancer doesn't kill me the treatments I take to cure it willUndecided
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Jun 15, 2011 08:53AM sheri47 wrote:

hi susand did u do the reclast i was dx  at 44 pstioperosis tonow 50 and had 2 breaks with in a month from each other will be getting reclast in 3 months they want to make sure vit d is ok first

Dx IDC, 2cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jun 15, 2011 09:03AM wenweb wrote:

I switched from Arimidex to Tamoxifen due to bone loss.  My onc wanted me to get the bisphosphonate  infusions too, but I needed to have a tooth extracted and had decided to get a tooth implant.  It was a scary change for me, but it is an option.  Tamoxifen has been around longer than the aromatase inhibitors. 

You are stronger than you seem, braver than you believe, and smarter than you think you are. A.A. Milne Surgery 9/24/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/19/2009 Breast Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 23, 2011 07:37AM cycle-path wrote:

I went on oral Fosamax in 2005 and within a few weeks I was in what I'd call a gastric crisis. I took it precisely as directed. No one had told me about the possible gastro SEs. 

When I figured out the problem I stopped taking it but the damage was done. I was put on IV Boniva for a few years and then Reclast was recommended. I think I've had 3 annual Reclast infusions now. My next one is due in August.

I've never experienced even the slightest SE with either IV Boniva or Reclast. I literally can't tell I've had it. The only evidence is the bandage from the IV.

No jaw or tooth issues. Personally, I think a lot of the jaw issues have been in patients who were very ill from another disease or treatment which caused the osteoporosis in the first place. I'd like to see stats on jaw problems in people who were on IV bisphosphonates but were otherwise healthy, but as far as I know no such stats are available. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jun 23, 2011 11:42AM susand wrote:

Thank you cycle-path.  I am so glad you havent had problems with it.  I cant imagine taking the oral bisphosphonates because I am already on nexium for gastritis and have problems with my esophagus.  My infusion is scheduled for next week and I have been stressing about it.  Hopefully my experience will be similar to yours. Wenweb, I did consider switching back to tamoxifen but my doctors seem to think that I need something for my bones no matter which hormone therapy I take because of the extreme bone loss.  Its all a bit overwhelming.  You read about the side effects that these drugs you take to help protect you from cancer can cause but its still I swift blow when you start getting them!

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Jun 24, 2011 10:41AM cookiegal wrote:

susand...my situation is very very similar to yours, age, bone loss and all.

I had reclast once last year, just had bone scan Tuesday. Will get results July 6.

I am paranoid about jaw problems, since I am the queen of SE's, and I have not had them. I am one enthusiastic little brusher and flosser though. I read on here a woman got a pomegranate in her gum, so my dentist said don't eat pomegranetes. 

The osteonecrosis is very very rare in younger women.

I did have full fleged symptoms when I had the infusion. Keep water close if you are alone, as I was too sick to get up, and I did briefly pass out. Think severe severe flu. Bone pain too.

Still they were over pretty quickly. I had the injection on a Friday and made it to my cousin's fundraiser on Sunday.

You deserve a cookie!
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Jun 25, 2011 06:58AM QCA wrote:

My onco wants me to have a reclast infusion every two years due to ostopenia.  I met with him today and of course he had a ready answer for all of my questions (like the osternecrosis of the jaw and femur fractures), so finally told him I was just afraid of this drug.  He advised (knowing the kind of person I am) that I do my own research on it, think about it, and then make a decision.  I'm 61 and he stated he wasn't worried about my osteopenia now, but wanted to use this as a preventive measure to forstall problems say, 15 years from now.  I'm also on arimidex (generic) and he said the reclast infusions would help to counteract arimidex-caused bone issues.  So, I guess I'm going to start the research!

Kathy

Kathy Dx 7/7/2010, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jun 25, 2011 07:11AM tembo wrote:

I've been on arimidex for 4 months and my baseline dexa scan was OK for my spine and R hip but showed osteopenia in my L hip. My onc wants me to either take monthly Boniva or IV Reclast to prevent bone loss she's says will happen on the arimidex. I haven't decided - would rather not have to. Has everyone who's been on an aromatase inhibitor like arimidex had significant bone loss and if so over what time period? 

Dx 1/10/2011, ILC, <1cm, Stage I, Grade 1, ER+/PR+, HER2-
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Jun 25, 2011 07:36AM SpecialK wrote:

Just had this conversation with my onc yesterday about Reclast.  I had reflux surgery 16 years ago, so can't take any of the oral drugs.  Will be starting Femara in about a month, I am 3 weeks from my last chemo.  I was osteopenic before BC, but when I asked him about the jaw necrosis he indicated that it is very rare, like 1% of cases.  I also think cycle-path is correct, many of those cases involved folks with other underlying medical issues.
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 26, 2011 06:49AM sam53 wrote:

I got Reclast 9/2010 and wish I had not. I had been on Arimidex for 2 months May-June 2010 and stopped due to S/E. After stopping the Arimidex I had second stage reconstruction and got MRSA- was vry sick for a month the got Reclast.  But after Reclast my bones and muscles really incapacitated me. Turns out that I was suffering from hyperthyroidism which went undiagnosed for 3 months. I blamed the Recast but this week my oncologist said she had 2 patients develop hyperthyroidism after being on Arimidex... so who knows. I know I will not take Reclast again. I  am only osteopenic. I probably won't take Arimidex either. Not sure yet.. Ended up having thyroidectomy so won't be having issues with that again. My BC- 3 tumors all greatly ER + but I caught at Stage 1 and did bilateral mastectomy and chemo due to intermediate reoccurrence score on one tumor. My Alkaline Phosphatase (ALT) and some liver enzymes are still quite elevated. I am hoping I will get back to some normality one day. I do feel so much better after thyroidectomy.  I would not recommend Reclast for anyone with only osteopenia. There are new black box warnings about possible severe bone and muscle pain

Dx 9/3/2009, IDC, 1cm, Stage I, Grade 3, 0/8 nodes, ER+/PR+, HER2-
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Jun 29, 2011 06:59AM Theo wrote:

tembo - April 09 DEXA was normal. April 11 DEXA showed that I now had Osteoporosis with a 6.8% decrease in my lateral lumbar. My oncologist has suggested Reclast. I have been on Arimidex since November 09. I feel I'm devinitelly caught between a rock and a hard place.

Dx 5/12/2009, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Jun 29, 2011 08:49AM QCA wrote:

I'm still debating, and like Susand and others I've read most of the sites where people detail what horrid things happened to them.  This is the biggest "catch 22" situation I've ever been in in my whole life, and I still don't know what I'm going to do.

Kathy

Kathy Dx 7/7/2010, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jun 30, 2011 06:08AM susand wrote:

I agree that this is the biggest "catch 22".  Its strange that I am more afraid of this drug than I was taking Chemo (A.C.T.).  My infusion was scheduled for tomorrow and guess what...I just cancelled it.  I was just too nervous.  The hard part is that this is against all of my doctors wishes to cancel and I really do trust and like my doctors.  Its not like I haven't been thorough.  I have seen my oncologist, primary physician, an endocrinologist, and had a consult at Memorial Slone Kettering.  All four doctors agree that I need to start bisphosphonates and think reclast is the best option.  I pretty much have resigned to the fact that there aren't many other options for me. Its just hard because I feel good right now.  Summer has just started and I have my children home.  I want to enjoy my time with them and not worry about my jaw, heart, kidneys, bone pain etc... At the same time I feel like I am crazy for not taking care of my bones.  Damned if I do and Damned if I don't?

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Jun 30, 2011 10:43AM Kathy044 wrote:

What about taking oral Etidronate, at least for the time being? It may not be quite as good though. It is an older different family of bisphosphate  and the pill doesn't need to be swallowed whole. (I can't swallow pills so I chew mine.)  Etidronate does not have an indication for osteoporosis in the US but it is being used off label as treatment for those unable to take the newer oral bisphosphates. It is prescribed for osteoporosis in Canada and the UK (not sure about Australia).

www.ncbi.nlm.nih.gov/pubmedhea...

Dx 2009, ILC, Right, 1cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 10/28/2009 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 12/15/2009 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 5/1/2010 Whole-breast: Breast Hormonal Therapy 6/3/2010 Arimidex (anastrozole)
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Jun 30, 2011 01:53PM cycle-path wrote:

To the women who've heard horror stories about Reclast, I just want to repeat: I had no bad effects whatsoever. Period. For me it's just like getting IV distilled water. 

You may well be the same. Keep in mind that most of the people who post on the web are those who had problems, while the many who (like me) had no problems generally say nothing. And that makes it seem like "everyone" had problems. Clearly, this is untrue.

You might be able to get a more realistic perspective on the SEs by asking your doctor how many of his/her patients had more than minimal SEs. My doc says few of her patients have anything but some mild flu-like symptoms.  

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jun 30, 2011 02:08PM Linda11111111 wrote:

Hi! I had 12 monthly infusions of  Zometa (very similar to Reclast) without any side effects. I think most people post when they have a problem and there are far more people that never have any isssues. I'd go with the docs on this one! 

Surgery 1/1/2001 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/1/2001 AC + T (Taxol) Hormonal Therapy 4/1/2010 Femara (letrozole) Dx 5/2010, IDC, 2cm, Stage IV, Grade 3, 3/12 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/1/2013 Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Chemotherapy 2/1/2015 Xeloda (capecitabine)
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Jul 8, 2011 10:32AM susand wrote:

My reclast re-scheduled infusion is scheduled for tomorrow.   Wish me luck! Thank you to all of you for the information and support.

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Jul 8, 2011 10:59AM QCA wrote:

Good luck susand!!  Please let us know how it goes.

Kathy

Kathy Dx 7/7/2010, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 8, 2011 02:03PM cycle-path wrote:

Yes, Susand! Please let us know how it goes. I'll be thinking of you.

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jul 11, 2011 12:05AM Msklapkin wrote:

I have not been on this board for AGES!  It has been 6 years for me.

I was on Fosamax for 3 years when both my Oncologist and Endocrinologist suggested Reclast.  I have had NO SE after 3 infusions.  The first 2 were a year apart and this year was 18 months.  I have been told we will wait 2 years for the next one.  I realize we are all guinea pigs with all the new medicines we take (including chemo ) I cannot waste my energy worrying about what will be.  Cancer has taught me to live for today, and put educated faith in my doctors recommendations.

Do not let fear dictate a medical treatment.  we are all strong survivors!

susan 

Dx 8/8/2005, IDC, Stage IIB, Grade 2, 1/8 nodes, ER-/PR-, HER2-
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Jul 11, 2011 05:45AM susand wrote:

Hi!  Thank you for the support.  It really helped. After all my confusion and getting as many opinions that I could (I ended up consulting with 6 different doctors. Maybe I am over the top, but this osteoporosis dx really got to me), I had my infusion on Friday.  It was a little strange to go back to the room where I had all my chemo infusions, a bit of a flashback.  The infusion was quick and painless.  For the rest of the day I felt like my head was in a bit of a fog and I was starving for junk food which I rarely ever eat.  I took Cookiegals advice and had a small cooler with waters and drinks by my side.  Glad I did.  When I woke up on Saturday I had all the flu symptoms including a fever and achenes. The weirdest one was that I felt like I had ten pound weights on both my eyes!   I had prepared for it so my kids were looked after and I curled up in bed with movies.  By the time I woke up on Sunday I was feeling 100% back to normal.  I am hoping the reclast is going to do its job and the side effects are over.  Who knows?  Obviously.. no one really does!  For now, it wasn't bad.  Its much easier to have a 'flu' when you are prepared for it as opposed to when a real one just hits you. Again, thank you to anyone who shared their experience with IV bisphosphonates.  I would love to hear any updates if anyone has them.   

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Jul 11, 2011 05:56AM cycle-path wrote:

Yay susand! Glad to hear it's over and you "survived" it. It sounds like it was not too bad, particularly since you were prepared. 

I have an appt with a new endocrinologist this week to decide whether I should stay on Reclast or what, and I'll try to remember to post after the appt. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jul 11, 2011 06:29AM susand wrote:

I appreciate the encouragement cycle-path!  I would be interested in what your endocrinologist says.  I am already thinking ahead about what I want to do to be proactive about my bones.  I had asked my endocrinologist if I would be able to take a reclast break after a year or two and possibly try the calcitonin nasal spay as it seems to have very few side effects.  She said it was a possibility but no one had ever asked her that before.  Who knows...for now I am glad that I am done for at least the next year.  I am going to be very diligent with my weight bearing exercises and diet to try and help myself as much as possible.  As far as the immediate side effects of the reclast, they weren't too bad.  I have never gone to bed feeling so flu struck and woke up feeling great. 

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Jul 11, 2011 06:49AM QCA wrote:

Thanks for the update, Susand.  I'm so glad you got along well and the "flu" was short-lived.  Reports like yours encourage me to do this in September.

Kathy

Kathy Dx 7/7/2010, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 11, 2011 06:53AM susand wrote:

Kathy, so far so good.  I will keep you posted if there are any changes. susand

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Jul 15, 2011 02:02AM cycle-path wrote:

susand -- I saw the endocrinologist yesterday and he said several interesting things.

First, the early warnings about bisphosphonates and jaw necrosis turned out to be applicable only to people who were taking high doses of steriods, so it's not a problem for most of us. He also said that while the bisphosphonates do protect us from normal fractures, people who've been taking them are at a slightly higher risk for "atypical fractures." Apparently these are fractures high up near the joint.

I have been on Reclast for 3 years and was on Boniva for 2 years before that. I have osteopenia in the spine and mild osteoporosis in the hips. The doc said there are two schools of thought for people like me: stay on Reclast until the osteoporosis is gone, or take a Reclast "vacation" of a couple of years by skipping 2 of the annual doses. Then go back on.

He wants me to have the Reclast again this year (next month) and then talk about it again after my next bone density scan, which I can have early in 2012.

We talked about a few other things that may or may not be of interest, but if anyone has any questions I can certainly respond. Also, I'll be talking to him in a few days and can ask questions then too. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jul 15, 2011 08:21AM susand wrote:

Hi Cycle-path, thank you for the information.  I have felt okay since the infusion. I still have a slight headache and heavy eyes!  Nothing I cant manage but I hope it is gone soon.  I am very glad he said that about the Jaw.  I have been really nervous about that.  I am on Aromasin which does have steroidal properties.  I wonder if that is a concern?  The literature I have read says that the ONJ is more likely in cancer patients or people who have had Chemo. Do you know if we are considered cancer patients once we are NED or are they referring to people actively in treatment?

I have read about the atypical fractures too. I think they occur more in people who have been on bisphosphonates long term.  My concern is that I am 44, so there is a lot of time until the golden years that I am so hoping to make it to!  I am not sure what time frame I am on to stay on reclast.  My Oncologist just said I should take it for 2 years and then see what my dexa says. 

It has been so nice to hear from you since you have had no SE's and are doing well.  I hate that I cant seem to shake being so nervous about this drug even though the initial side effects weren't bad.  Any other or new info you get is certainly appreciated! 

thanks, susand

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Jul 15, 2011 10:09AM cycle-path wrote:

susand, I'm so glad you're still reading this thread. I was thinking about PMing you to be sure.

I can't say about Aromasin and Reclast -- I'm not taking Aromasin so I didn't ask about that. The doctor I saw is a new one for me and I liked him a lot. He seems to keep up very well with current research and literature. The impression I had from him is that the theories about bisphosphonates have changed a lot in the last few years so what one has read may not be up to date. My MO also said that the theories had changed recently, though she didn't go into any detail.

My sense, and this is only a gut feel, is that the quality of the bone built by the bisphosphonates might not be quite as good as the "normal" bone, and this is the reason for the atypical fractures.

I'm older than you but I agree that I want to get MUCH older and even more I want to be able to remain active. My mom, who was a busy person like me, developed a chronic illness in her 70s that limited her activity and she just about went nuts. If that happens to me I'll make everyone around me miserable! So I have to be sure it doesn't happen.

Lets keep in touch. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+

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