Reclast?

Momine

Iago, thanks! Definitely good to know. All the orthopedists I have seen so far (3 in the last 3 years) have said that the scoliosis is not that bad and that I am in better shape than you would expect, given the scoliosis. 

The bone loss seems to be fairly slow. If I had started with normal bone mass, I would have been fine. The problem is that I was already in osteopenic range when I started the AI, and I am supposed to stay on for 10 years.

I will post back once I have testing and have seen the osteoporosis specialist.

hopedreams

Momine..good for U..he sounds like a great orth..Dr.  I also get those blood test & urine on kind of a regular basis..since my hip pocedure..last Dec.   I hope the osteoporoisis Dr. will be on the "same page" as your orth . Dr. & not pushing those other big name drugs on U..wishing U the best..~Hope

Momine

Hope, I am really happy I found him. He was recommended to me by an old dude at the gym. It turns out the ortho is a famous sports doc here, who used to be the doc for a big Greek soccer team. It also amuses me that I have been wrestling with the cancer docs over this for about a year, and neither of them thought to do the tests, even though I suggested that it could be metabolic, nor did they send me to this ortho although he is in the same hospital.

hopedreams

Hi again..I have learned..over  the yrs..>> almost 18 yrs and 3 different cancers..none related to one another..that we have to ADVOCATE..FOR OURSELVES..!! My orth./surgeon Dr /also Metabolic specialist..is a biggy  at NY Presbyterian Weil Cornell med. Center & also he is at Hosp for Special Surgery..both in NYC.. thank God for him..as I am walking again..since the procedure he did on my hip in Dec. 2013 My cancer Dr.'s are all at Memorial Sloan Kettering..also NYC.. good luck..keep me posted on your osteo appt..I can tell U would know what's best for yourself..  [ lol can't always listen to the Dr.'s either]

Momine

Hope, I completely agree with you about having to look out for ourselves. It took me a bit to realize it, but we really do have to.

corky60

I just saw this: http://www.osteofound.org/news/panel-issues-exercise-recommendations-people-osteoporosis-and-spine-fractures

Also look on Amazon for exercise DVDs by Susie Hathaway.

lago

thanks corky.

corky60

You're welcome, lago.  In the past ten years I've lost an inch and a half in height.  And I'm sure that five months of Aromasin caused more loss,  Some insurance plans won't cover Fosamax for osteopenia, only osteoporosis.  I wonder if that's why the doctors wait to prescribe it.  They always measure height at my MO appointments so they're aware of the problem.  Even if we strengthen our bones we don't regain our height.  My mother lost two inches by the time she was 70 and she didn't take any meds for that.  Osteoporosis runs in families, alas.

lago

corky I lost 1/2" in one year! That is scaring the shit out of me. I'm sure all those crunches and sit ups I've been doing since 2009 might not have helped but no one told me not to.

Momine

Iago, What is your T-score on the spine?

lago

-2.6 on spine, hip pretty stable at -1.2 and femoral neck stable at -1.5

Momine

Iago, thanks! I am getting there, but hopefully a bit slowly. 2 of my vertebrae are particularly bad.

lago

The year before I was only -2.3. I should have been send to the Rheumatologist or Endocrinologist at least the year before. 

The plan right now is to be on this drug for 2-3 years. My Rheumatologist says it takes about 2 years to see if this will work. I have less than 2 years left on Anastrozole.

conniehar

lago - just saw this - sorry about the dx!  I feel your pain - If you saw my other thread in this section I just got the news that I have osteoporosis now.  My bad area is the femoral neck.  I tried Actonel and had such severe gastro issues (mainly heartburn) that I started having heart palpitations.  So, that is why Reclast was suggested for me.  I will get my second infusion this month.  I have felt like I am in shape but when I think about it, I probably wasn't doing as much as I should have in terms of weight bearing exercise.  I was mainly walking so I have started a much better routine now.  It is so scary because you really have no idea if anything you are doing is helping the situation.  I was shocked to find that I moved into the osteoporosis dx after taking the Reclast.  I was also told to lower my calcium supplement intake.  Thinking of you!

lago

Thanks connie. Yup I too was just told to lower my calcium. I was doing everything I was supposed to be doing. Not just the power-walking but strength train (granted the sit ups and crunches were a no no). I eat all the proper foods in terms of veggies that have calcium, yogurt and some cheese. Just this sudden drop from -2.3 to -2.6 when I had been stable. Granted the endocrinologist I saw tested me for celiac disease. Just slightly high for gluten so told me to see a gastroenterologist. That could cause bone loss too but I highly doubt I have it. Will be seeing him tomorrow.

How soon did you have gastro-issues. I did have some heartburn yesterday but I'm not sure if it's from the Fosamax, something else or both. I've have had reflux in the past including on chemo. 

Also there was a typo in my first post. I've only lost 1/2" in height.

corky60

lago, it could be that your genetics worked against you.  We do everything right and still experience bone loss.  The AIs make things worse.  Don't beat yourself up.

The National Osteoporosis Foundation (NOF) has a great website with discussion board.  Back extension exercises are supposed to be good for supporting the spine, as is the "superman".  Susie Hathaway posts a lot on NOF and there are good Youtube videos.  Livestrong has some on Youtube with trainers demonstrating the exercises. 

When I was being seen for a diastasis recti my PT told me that no one should ever do crunches because it is too hard on some of the muscles.  She also showed me the right way to get in and out of bed.  When we just sit up straight we're actually doing a crunch!

Hang in there!

lago

corky I am the damn poster gal for the disease.

√ small or thin (was both although not so thin now )

√ female

√ Now in chemo-pause

√ family history (mom)

√ getting enough D & Calcium (had D in single digits before cancer diagnosis)

√ Medicines (like those used for breast cancer)

√ Caucasian

√ diseases (right now there is suspicion of celiac but not sure. Seeing Gastroenterologist tomorrow)

√ Smoking (former quit almost 9 years ago. granted not a heavy smoker but I'm sure that adds to everying)

------------------------------------------

I started doing 2 & 3 of these exercises yesterday. They said that #3 might be difficult but do as many as you can till you tire. I got bored so I stopped. Not that challenging for me. #2 didn't seem too hard either but I have to admit my muscles on the top of my foot are a bit sore as well as my external abdominal obliques. So I know seem to have a good exercise for the side obliques. Probably works the abs too but my abs are in decent shape so that's why they don't hurt.

        and      

Momine

Iago, that last exercise (lifting back off floor) I do in the gym on this doodad where you hook your feet in and have support at the hips. 

conniehar

Lago - the heartburn issues weren't immediate.  It took a few weeks and I noticed it coming on gradually.  When I was in chemo, I was in a clinical trial where I was on an oral chemo.  I have had on and off heartburn issues since then so I am sure that contributed to the issue with Actonel.   I stopped taking it once to see if the symptoms went away and they did.  I started taking it again and the heartburn started up again. 

Good luck!

cakes

conniehar -

Thank you for starting this thread. I am so sorry I didn't find it sooner. I have osteopenia in my hips and I am taking Letrozole so I had a Reclast infusion last Fall along with my flu shot at the same time. In retrospect I find the idea that the pharmacist would approve the two at the same time alarming. I had a severe reaction to the Reclast. My lungs felt like they were sticking together and on fire among other side effects. I didn't have complete instructions to prep for the infusion and what may happen after. Stupid me….I should have read up on it before hand but at that point I was so tired of reading about cancer and radiation I figured it would be a cake walk. (No pun intended) I am reconsidering the Reclast infusion scheduled for next Fall as my Onc said it would be easier the next time. Hmmmm………  Any thoughts ladies?

Stay Strong,

Cakes

corky60

Hey lago, thanks for posting the illustrations.  I hope that you go from being the poster girl for OP to being the poster girl for improvement!

lago

Thanks. The tops of my feel almost not sore again. Ha ha. I obviously was using the wrong muscles to do the exercise first pictured.

BTW my gastroenterologist thinks is unlikely that I have celiac but feels I should do the test. He said about a 15-20% chance.  I'm waiting till fall... maybe will reach my deductible by then. I really like my gastro. Too bad I very rarely see him since my IBS is pretty much controlled. Reflux is under control too but let's see what Fosamax does. I pill down.

Nettie1964

Found it interesting that Scoliosis came up in this discussion!  I have pretty bad scoliosis and was diagnosed with osteopenia before starting the AI~  the MO hasn't said a word about putting me on anything for this!  I am taking calcium and vit D3!  So I guess I'll try to build bone by exercising!  But I'm having a terrible time with my scoliosis due to scar tissue from radiation!

lago

Nettie I had osteopenia even before chemo at age 49! Chemo did a job on me and big drop after. I've been on D since before cancer diagnosis, started calcium  prior to chemo have always been power walking and strength training but as you can see the AI, family history and all the other risk factors just didn't let me beat it. I would ask your onc if you could be referred to an endocrinologist or rheumatologist about your scoliosis and osteopenia. rheumatologist might be a better one for you given  your scoliosis.

conniehar

Cakes -

Sorry you had such a bad reaction to the Reclast.  I can totally understand why you would be hesitant to try it again.  After researching the drug on the internet, I almost didn't have the infusion - in fact, when I went for the infusion, I had to wait in the waiting room a long time which is really unusual for our cancer center.  I thought it was a sign that I should bolt - but I didn't....    Given what you went through, I might look for a second opinion.  Do you see an endocrinologist?   I wonder if there might be another med that you could try.

Ariom

Hi Ladies, just wanted to ask a couple of questions if I may. I have an osteoporosis reading of -3 in my spine, I have RA, and had a really awful reaction to Reclast a few years ago so never had another infusion. I also have reflux issues and take Nexium 40's 1xday.

I have just taken my second tablet of Actonel this week, first week I had tummy upset and diarrhea, but got over that. This week I felt fine. The Pharmacist tells me this Actonel tablet has an enteric coating these days and shouldn't cause any bad stomach issues, like the previous tablets. I feel that the sachet of calcium and vitamin D that comes with the once a week tablet is what is giving me some reflux. I seem to start feeling it repeating on me, soon after I take it. It is a really awful tasting effervescent drink that tastes like it is loaded with aspartame/sweetener, something I never ever use because of the findings about its bad se's. 

Is anyone else taking these, and experiencing similar problems?

Sorry, edited to add, my Doctor really wants me to have the Prolia injection, but after the Reclast se's, I was afraid to have anything that was long acting.

lago

Ariom my gastro is having me try Gaviscon (Prilosuck never works for me). Granted my reflux isn't too bad and right now I think it's from stress. I've only had one Fosamax pill so far. If that doesn't work I'll get him to prescribe Carafate solution. That has always worked for my reflux in the past.

Ariom

Hi Lago, I have never had any luck with Gaviscon. We have chewable antacid here in Aus called Quickeze, they work very well for me if I ever get any reflux breakthrough. I have been on proton pump inhibitors for years

My concern is about the sachets that are part of the Actonel pack. I don't know if Fozamax is marketed the same way, but Actonel has one tablet and 6 sachets that are marked from 1-6, they are mix of Vitamin D and Calcium and are taken for the 6 days following the 1x week tablet. I believe they are the cause of the reflux, not the Actonel tab, because the reflux only starts after I have that drink.

I just wondered if anyone has ditched the sachets and started taking their own calcium supplement?

lago

Fosamax is just one pill a week. I am on D and Calcium supplements. My Rheumatologist actually reduced the amount of Calcium. Wants me to get it from food.

Good news at the onc today. I had them measure me because one place says I'm 5' 5.5" another place 5' 5" and a 3rd place has said I'm either one depending on who is measuring. At the chemo place it needs to be accurate because your chemo is based on height/weight (to calculate skin surface area). I'm 5' 6"! I did not lose any height!

cakes

Conniehar - I will research Reclast before I have another infusion.