Reclast?

conniehar

Wow - so sorry to hear about your experience with ONJ OneBadBoob.  It is a very scary thing that is presented as being rare.   Is there the same risk of this on Prolia?  

Good luck with insurance lago!   So frustrating that we have to fight for everything.   

I have bad veins (and can only use one arm for IV's).  I had a good spot on one arm for a long time and then that one stopped working.  Now they access my hand but I have heard several nurses say they know how to work through the foot as well. 

OneBadBoob

On Prolia and ONJ:

http://www.lexi.com/individuals/dentistry/newslett...

I believe there is extra training involved in doing foot draws and foot infusions.  They use a pediatric needle and usually "warm up" your foot first.

Usually a RN with extensive ER experience will have no problem doing it, but you really need to push for it.

lago

OneBadBoob I had to fight when I used to get liver scans. Also no problem when doing surgeries. They never warmed my foot but I have good veins. With colonoscopies they won't do it in the foot because of infection risk. Lucky me I still had my port then. Next one is in 2021 so not sure what will happen then. 

So now they want me to try Tamoxifen too because I'm having some issues with Anastrozole. (Been on a break for 1.5 weeks and I feel fabulous).  We are having that discussion at 5pm today. Tamoxifen always concerned me. Not sure if it's as effective on triple positive folks like me and the combined risks associated with it. 

conniehar they like to do what's easy/cheap for them. Bullshit. We are paying big bucks for this. I now treat medical service like any other service. If I'm not getting proper service I will go else where.

OneBadBoob

iPhone ate my post!  Will post later. 

doxie

lago, 

What % is your PR?  I know with PR+ at a low % Tamoxifen is not as good an option.  Mine is 5% so AIs are important to stay on.  I've not looked into this with HER2+, though. 

lago

Doxie my PR is only 5% like you, ER is 30% but I also had a rather large tumor (IDC part 5.5cm/DCIS part 1cm)

doxie

You've been on Arimidex 3 years and a full year of Herceptin, both really important.  I've read that the first two years of AI are the most important. At least you've done 50% more than this. 

I took an 8 week break between anastrozole and exemestane.  I was scared to be off AIs for so long.  I'd only been on 5 months, though.  I sense your hesitation.  Frankly I'd try another AI.  I'm on exemestane/aromasin. I don't think my SEs are particularly different than if I had not changed, which was done because of eye SE.  Still you never know.  Then, I personally would try Tamoxifen.  It also helps with bone density.  I know this has been really troubling for you.  It is another reason to switch. 

I'm really familiar with severe depression, so don't take that SE lightly.  So far I've been spared, but I'm on a mantainance med for depression, same dose as when I was diagnosed with BC.  That may be why I've been spared.  No SE, thankfully.

Clearly your MO and NP want you on something.  Good you have a caring team.  I cringe with I hear of women with MOs who won't fight for their health vs cancer.  Not sure where my MO fits here.  He plays the devil's advocate sometimes, but I'm usually on board with plowing ahead regardless of the SEs.

SpecialK

It is difficult to know whether the patients discussed in the linked study were breast cancer patients with bone mets, or bone cancer patients.  This makes a difference because of the dosing and frequency of drug administration.  Patients with bone cancer, or mets to bone have an increased incidence of ONJ than patients using Prolia who are post-menopausal breast cancer patients that are not metastatic.

lago

Doxie I don't believe Tamoxifen helps with bone density it just doesn't destroy it like the AIs do. I have posted this on a couple of other threads. I'm not sure if you have read it but I will share with everyone here what happened today and yes I may be going on Aromasin instead of Tamoxifen.:

----------------- repost ------------------------

I just spoke with my NP today. I told her I wasn't too excited about Tamoxifen. She claims there is less bone pain with Tamoxifen. I told her my concern was the depression… granted it would be nice to not have the back/shoulder pain but the depression was at an unacceptable level. She said the depression isn't a typical SE but given that I went of the drug and have recovered 100% she knows that it's very real. (not sure WTF she is talking about because it is posted as an SE on Astrazeneca's site ).

Also expressed some concern about being HER2+ not metabolizing it as well. She has not heard about that but again with talk to my MO… and of course the Uterine cancer risk.

I asked what benefit I got from the 3 years. She told me that 5 years was an arbitrary number that they studied so they don't know about 3 years. (That's what happens when the Rx companies run/pay for the studies. They don't want to know if we can do it for less. They just study if we can take it for longer. They don't make money from us taking it for less time.)

So she is going to talk to my MO about Exemestane (Aromasin). Her concern is the SE will be the same especially the back/shoulder pain and other stiffness but she does agree that sometimes folks do better on it. She also said they can send me to someone to treat the depression on the drug. I am not on board with that. I don't need another doctor nor do I need a med messing with my mind when we know what's messing it up in the first place. Another drug most likely will give me another SE. This is getting ridiculous already. 

doxie

lago,

I remembered reading about Tamoxifen causing differences in bone density depending on menopausal status.  So I did a quick search.  

Basically, Tamoxifen causes bone density losses in pre-menopausal women.  It increases density in post-menopausal women while on the drug.  When they go off the drug, bone density falls significantly.  So it temporarily protects them.  The question is if the decrease in bone density is less, the same, or more than if the women would have taken on an AI over the same period of time.  I don't know if a study has examined this question.

Here is an article explaining complexities with Tamoxifen and bone density.  http://www.medscape.com/viewarticle/573782

And from the Cleveland Clinic website  http://my.clevelandclinic.org/drugs/tamoxifen/hic...

Because tamoxifen acts like estrogen in tissue other than breast tissue, women who take tamoxifen may derive some of the benefits of estrogen replacement therapy, such as lowered blood cholesterol. Tamoxifen may also increase bone density, which can slow the development of osteoporosis (bone loss) and reduce the incidence of bone fractures.

Here is an older Journal of Clinical Oncology study that backs this up.  http://www.ncbi.nlm.nih.gov/pubmed/8558225

Of the AIs, this new study indicates that exemestane/aromasin may cause less bone loss than the other AIs.  http://jco.ascopubs.org/content/31/11/1398.full  

No easy answers here.  

lago

Doxie I have been reading good things about exemestane for a while. While these other benefits of Tamoxifen are great I'm still not sure I'm willing to risk uterine cancer. I need to understand my risk/reward given I have been on an AI over 3 years VS risk of uterine cancer. I mean I'm taking risks with Prolia (osteonecrosis of the jaw) too and most of us have already taking risks with chemo and/or rads both having the potential of being carcinogenic. 

Also not everyone metabolizes Tamoxifen well and I hear that is can be more  common with HER2+. Waiting to hear back from my MO on that topic. Since her research has focused on HER2+ for decades I'm sure she would know. 

mfml

Hello all - I am very late to this party - but am very excited by what I am reading about Prolia.  I am 48 - went in for a bone density test after being on letrozole (Femara?) for about 3 months - and wash shocked to find I had osteoporosis in one bone and ostopenia in others.  At my age - I had never had bone density test before - my onc said it likely predated my cancr - though I find it hard to believe the chemo (AC/T) did not contribute.  She recommended I see an endocrinologist - and in the meantime switch to from letrazole back to tamoxifen (was on tamoxifen before my hysterectomy).  SE's much worse for me on tamoxifen than for letrazole!!  A couple of questions, specialK - I apologize if the answer is here and I have missed it:  are you still taking a an estrogen blocker or aromatase inhibitor for the BC - and also still on the Prolia?  I am going to ask about getting Prolia - I guess it would be the endocrinologist I would talk to about this.  I guess I could also hope that the tamoxifen SE's subside - but I am not sure how long I can suffer the hot flashes and HORRIBLE insomnia....  I wonder - is the insomnia from the hot flashes or from the tamoxifen itself?  Does anyone know?

Thanks all of you for sharing your experiences -I am glad I found this thread.

M

lago

mfml most insurances won't approve Prolia right out of the gate unless you have extensive osteoporosis or there is a reason you can't take the other drugs. Reclast also hard to get approval unless you have "failed" the other drugs meaning you don't get results or have issues. I don't even know if my insurance will approve Prolia even though I had heart burn. Who know they may want me to do Reclast but I don't want to do that because I won't allow IV in either of my arms (LE in one, other at risk with 4 nodes removed).

If I can handle a different AI I will be doing both. 

conniehar

mfml - I took Tamoxifen for 5 years and had horrible insomnia but I also wondered if it was from the hot flashes.  I take a low dose sleeping pill each night and it helps.  I switched over to Femara about a year about and I still get the hot flashes - I see no improvement at all.  I still take the sleeping pill so not sure if the insomnia is gone.  Maybe I will try going without it one night.

SpecialK

mfml - yes, I am still on Femara and receiving Prolia. As long as i am on hormonal therapy my onc has said i will also stay on Prolia. My mild osteopenia was known prior to breast cancer (had a hyst/ooph nine years prior and I fit the physical criteria for it) but my situation worsened significantly after chemo and six months of AI therapy. I had tried oral meds when the osteopenia was first discovered but I did not tolerate them due to previous reflux surgery. My onc likes Prolia and never suggested Reclast even though it would bypass the GI issues. My Prolia is managed by my onc, I don't have an endocrinologist.

I have found less insomnia if I take Femara at night. I am also more used to the hot flashes - have had them since the hyst/ooph 13 years ago, chemo and AI did not change their frequency or intensity, I have them every night but can usually fall asleep again. I was a sporadic sleeper before diagnosis and that hasn't changed either!

lago

conniehar my insomnia is gone now that I have stopped Anastrozole. Still waiting to find out if Aromasin is in my future.

cookiegal

One Bad Boob!!! 

That just totally sucks.

LE and Osteonecrosis!

Somehow I always felt since I got LE I am always the worst case scenario.

My dentist kinda wrote in my chart I am a little crazy (I saw it since they had it up on the wall at the endodontist.)

Sigh!

So glad it healed.

lago

cookiegal I have LE too with only 10 nodes and no radiation. It happens to a lot of us. As far as the Osteonecrosis. Is that resolved? Did it mess up your mouth that much? Hope they caught it early.

cookiegal

Iago, I was responding to One Bad Boobs osteonecrosis.

OneBadBoob

yes osteonecrosis has healed.  Missing a big piece of jawbone, but so far so good. 

lago

So OnBadBoob do they rebuild the jaw? 

OneBadBoob

No.  It had not gone to the bottom of the jaw bone so they just "dug out" the necrotic bone and I have a big "U" in the jaw bone.  They had to remove two implants, so now I have a five tooth bridge cantelivered off of one back tooth.  Not sure how long it will last, but it has held up for a year.

It could have been worse.  It could have not healed which is common with ONJ.

Also it did not "break through" the soft tissues to the outside of my face.

But the kick in the teeth, so to speak, is I now have LE of the neck on the left side.

Just when you think it cannot get worse. . .

But it's been 7 years since my DX and I am still here, so that is the bottom line.

lago

Thanks for the info OBB (initials may you sound like a Star Wars character). So glad it has healed.

lago

This is interesting for those of us worried about our bones. Teeth first though:

Forget fillings, scientists just discovered how to regrow full teeth using lasers : linky

Ariom

Will be reading that next Lago!

Meant to tell you, I gave the Actonel 8 weeks and kept a diary of the SE's. I went to my Dr, read him the list, waited for a fight and what did he say? "I'm surprised you lasted this long, It's not for you!"

Back to just Vit D and calcium supplements for now. He thinks Prolia will give me similar SE's since I had such a bad time with Reclast.

I went to the Dentist this week and told her I had taken Actonel, but just for 8 weeks, she still said she hoped I wouldn't ever need an extraction because it has such a long half life in the system, just not sure about how long for such a short exposure. Damn!

conniehar

This is a repeat from another thread but just posting back that I finally had an appt with a new endo that someone on this board recommended.  What a difference!  Totally professional Dr and office staff - called me back promptly and proactively.  So happy I made the switch!

Had a bunch of labs and all was normal except I had elevated calcium in my urine.  Have to do the 24 hour urine test again to make sure it is an issue.  In any case, he is recommending Reclast, Forteo or Prolia.  I had Reclast once before and it was fine but I will do some research on the other two.

I had upped my Vit D to 4,000 IUs a day and my level jumped from 34 to 46 so happy about that!

lago

Wow Connie that's great about the D. Mine was is about 35 but everyone including my onc says that's fine.

Ariom

I wonder about the Vit D levels, mine is 67 and my Doctor says that is the low end of normal and still wants me taking 2000units a day. I wonder if we have different measurements for it.

lago

Ariom I was told when my D level was 79 that was high (normal being between 30-70) I think it depends on the test you got. 

Ariom

Thanks Lago, I just looked it up and found the same figures, it is a mine field isn't it!