Reclast?

lago

My spine is the only thing declining. Everything else hasn't changed. It was stable for a while but then finally dropped into osteoporosis. I wish I had started before it did that. I do the exercise, calcium etc but it still isn't enough.

SpecialK

I am inclined to think that stopping the AI drugs likely stops the bone loss to some degree, if the loss is indeed caused by the drug.  Some number of us would have some loss, although perhaps not as much, with normal aging and postmenopausal status, but how do we know how much?.  My onc will discontinue Prolia when I come off the AI, so I believe that his thought is that once I am off the AI the accelerated loss will also stop.  Since I was able to reverse the loss on Prolia I will be very curious to see if I remain stable where I am currently (not even osteopenic anymore), or go back to losing when I am off Prolia.

jsrose14

I just had the infusion of reclast on Wednesday and I'm still feeling kind if crappy. Wondering how long these side effects lasted for those who had any?  Hoping it was worth it and my bones will be getting stronger!

Jrose. 

conniehar

jsrose14 - I remember feeling crappy for about 3 days.  So, hopefully by now you are be feeling better?

RMlulu

Had my Zometa infusion and jumped on a plane 2 hours later.  Overall not too bad, but did have 12 hours of fever, chills, aches, bone pain  

My question is how much Vit D and calcium?  I tired to up my levels to:

Vit D 4000

Calcium 1200

But even with 8-10 prunes and 1cup fiber one the big C is an issue so back to just a multi vitamin...ugh C is a new problem...anyone else have constipation issues with all these supplements?  Must I take?  Won't the Zometa and AI cancel each other out?

And will my bones...hips...spine...get stronger and the damage undone?  Or just prevent more loss?

Jsrose hope you are feeling better!

Got to go walk...

Thanks

Cindy

corky60

Cindy, do you take magnesium with the calcium?  I have read that it should be one part magnesium to two parts calcium, so if you take 1200 mg calcium it should be 600 mg magnesium.  Also with a cup of fiber (what form is that?  psyllium?) you may need more water.  Insoluble fiber needs water.  And have you seen this thread?
https://community.breastcancer.org/forum/6/topic/781867?page=1

RMlulu

Thanks Corky.  Appreciate the links and info on supplements.  Finally got over the big C...lots of raw oats and easing back to the sups.

Ah, normal and regularity

cakes

Cindy, I take my Vit D sublingual 2x/day. The sublingual is absorbed more readily but only so much can be absorbed at a time so the remainder is excreted . My MO suggested I take the Vit D 2x/day, news to me……

I am also a big proponent of Omegas. I take them at night to help with joint pain. 

I am due for my Reclast in Oct and NOT looking forward to it. I wish the nurses who administered the Reclast would have told me to drink oodles of water before and after. I thought my lungs were going to melt together!!! Nasty stuff but I will do it again if it keeps the osteoporosis at bay. 

Take care all.

(((Hugs)))

Cakes

B123

has anyone started taking prolia shots? If so, any SE to worry about or is it easier to tolerate? My spine is now -2.5 in a 2 year span, on arimidex. My back aches and front of my thighs now throb every so often. Not sure if it's from my back or exercise?? I tried fosomax 1x/wk, got terribly sick.  I really need a fix fast.. So so frustrating! 

lago

B123 I'm about to get my first shot. Just waiting for the calcium test to be sent. Shot has been order by my MD. I'm -2.6 in spine as of last year. Not sure what it is now.

BTW I switched to Exemestane (Generic Aromasin) after 3 years on Anastrozole (generic Arimidex) this June. I am no longer depressed, sleep issues gone and my back/neck/shoulder pain is gone. I am so glad I made the switch. I'm back to my old self again.

B123

Lago, please let me know how the shot goes for you, I hope no SE for you!!  Did you have all these bone pains as well when on arimidex? You really hit it on the nose, moody, hard to sleep, my low back is killing me, I'm so afraid the osteoporosis -2.5 is the cause and I'm going to break! I think I need to switch to arimasine.  Thanks for telling me! 

SpecialK

B123 - I am on Prolia and have had 6 injections (every six months) so far.  No SE at this point and the drug has reversed my decline and I am back into a normal density range.  I had a significant decline from stable osteopenia after chemo and six months of aromatase inhibitors.  Do you have any specific questions I might be able to answer?

lago

B123 Exemestane (Aromasin) will not help the osteoporosis. But as far as the sleep issues, back/should/neck pain that was so bad it actually hurt for me to stand up straight and the depression did all go away once I got off Anastrozole. My MO was the one who recommended I try the Exemestane. Even though it's generic it does cost more but there was no way I could stay on Anastrozole. Ask your onc. You can always switch back. I'll keep you posted when I get the shot.

SpecialK I hope I'm like you. My rheumatologist did say the first one could produce SE but after that the subside with the next shot.

SpecialK

lago - I hope you have the same experience I did too - I literally would never have known I was given a drug, absolutely no SE at all.  I had a scan after the 4th injection, I believe, and that showed the positive change in density.

B123

Lago, I will definitely look into it with my MO, Im the same way.. I feel like a question mark when I first stand up, its awful.  Im only 43 and very active.. Thank you!  I feel like Im falling apart fast..  I think I may call the office this week and see about changing it, my apt is not until December.  I hope they will do it without having to come in.. ugh!

SpecialK, Did you take Fosomax or have any IV fusions before the Proila?  I remember Lago and someone else said it is hard to get approved by insurance unless you try the others first?  I did the fosomax (generic) 1/week pill, it tore my stomach apart and then some.. So there is no way Im doing IV fusion.  Im so happy for you that you had no SE with Proila, that is great! I hope I have the same luck.. and you as well Lago!!

B123

Ladies, I just read the SE and serious SE of Prolia!! Im not sure I want to go that route.. that sounds scary and problematic??  YIKES! I feel like there is no cure without paying the price in another way?

lago

B123 Yes there are serious SE to all things. OMG what about the SE of chemo! But if you can't take the pills think about the SE of osteoperosis. I'm willing to risk it.

SpecialK

B123 - You always have to look at the percentages for the SE - they have to list every single possibility, I have had no issues though.  It is also important to note that Prolia is given to bone cancer patients, in much higher doses, and they will experience more SE at that dosing.  I did take Actonel and Boniva years ago when I was first diagnosed with osteopenia after a complete hyst/ooph - could not tolerate either.  I had reflux surgery in '95 and both meds gave me terrible esophageal discomfort.  I did nothing but calcium until diagnosed with BC.  I did not use Reclast or any oral meds after diagnosis and prior to the Prolia, but also because I don't like the bone coating mechanism they use and the fracture rate - I prefer the mechanism for Prolia which slows down the old bone removal rate to match the new bone creation rate.

B123

you both have a good point! I'm scared to try anything new, especially where it mentions fractured femur, good god!  But it seems less of an occurrence with prolia then with reclast or orally.  I guess I will call my endo and mention to him. He didn't even mention it to me, he had me on actenol for 3 weeks, couldn't take it anymore so he said well I guess you will have to go with the reclast then?? He made it seem like there were no other options?   

Thanks for clarifying! 

B123

Lago and SpecialK, I spoke with my endocrinologist today, he was basically no help! I asked him about Prolia instead of a the IVFusion.  he said, Prolia has been out for only a few years and there is still more questions then answers for its use and progress.  He also mentioned that there may be some altering to cancer patients.  I asked him what that meant and if it interfered with my Arimidex meds and he said no, but there was question about raised concern for cancer?? He was not against it and said it would be fine if I chose to go that route, no SE at all but feels Reclast has been around for over 20 years and has been a first choice. 

I am so disappointed, I feel like there is no options out there? You take one med to live and be cancer free but with SE of another serious problem that cant be fixed without yet another serious problem?! Who makes these meds??  So frustrated...  I think I need to find another Endo..! 

SpecialK

B123 - can you ask your MO about what they would like to see you use?  My Prolia injection is given by my MO and was ordered at his direction specifically to address bone loss from treatment.

lago

I fired my former endocrinologist (Harvard Med school and residency at Brigham & Womens) Maybe it's a MA thing. I see a rheumatologist. She was much more informative and really fought my insurance for the Prolia. She did explain to me that she likes to start with the pills first because they have been out the longest and the SE are predictable. So I did go with fosamax first even though I had a history of reflux. To be honest I wish I could take the pill. Easier and much less $$.

SpecialK

lago - did you check into any programs from Amgen to help with cost? When my MO had not yet received my insurance referral they signed me up with a program in case my insurance didn't cooperate. Here is a link, scroll down to Amgen Assist to help with co-pays, and Safety Net Foundation.

http://www.breastcancer.org/tips/paying/lower_med_cost

lago

Special I've almost hit my deductible this year and have now purchased a 3 month supply for $520. So I'm good through December. I can purchase another 3 month supply before the year is up so it may be $150 or less.

B123

My MO is all about infusion only, they don't do anything else on their end to treat that.  Lago, and they say MA has the best doctors.. I don't think so!  I think I will run it by my insurance just to see if its covered at all and then decide from there.  It looks like if this does not pan out, Im out of luck!  I just hope that between my D3 and exercise, I will not get worse.  Is it true about the risk of it possibly causing cancer?

Thank you for the link Lago, I will definitely do that!!  you are always so informative and helpful!! 

lago

B123 you can also talk to your primary care doctor. S/he might be able to direct you to a different endo or rheumatologist that deals with osteoperosis and will present all options. But most likely you will have to go the pill route first to satisfy your insurance. I would be doing the infusion if it weren't for my LE and LE risk in my arm.

lago

Just an update. Got my Prolia shot today. So far I feel fine although a little strange on the way home. 

cakes

Hi Ladies.

I had my DEXA done Sept 25 to find out if I needed another Reclast infusion. I was called with the results but also requested the results be mailed to me as they aren't available online. The Reclast did it's job and my numbers have moved in the right direction so I won't need to have the infusion this year! I will post the results for last year and this year when available to me. I am still vitamin D deficient so I am taking 2000IU in the morning and 2000IU at night to help with calcium uptake. I was told by my Onc to take the Vit D 2X/day vs one/day. 

Please be sure to drink lots and lots of water when having the shots and infusions (before and after). I wasn't told that tidbit last year when I had the Reclast infusion and it was not pretty. I will know better next time. Given my good results I won't hesitate to have the infusion again. I can't say I am looking forward to it but I am so thankful there is something out there that helps with osteopenia and osteoporosis due to Letrozole and radiation. 

SpecialK

cakes - make sure you are taking your Vitamin D with some amount of fat, to help it work.

http://www.webmd.com/diet/news/20100507/take-vitamin-d-with-largest-meal

 

cakes

SpecialK-

Thanks for asking. I do take my omegas at night with my vit D but not with the morning dose. I will try to split up the omegas so I get fat AM and PM. Thank you thank you.

I take the omegas for aching in my bones from the Letrozole and it seems to help. 

Cakes