Reclast Anyone?

susand

Thank you very much for the information and your opinions.  It has been so helpful to me to communicate with someone going through a similar situation. I have been checking this thread to see if there was any activity and it was nice to see your note.  I really appreciate it and yes, lets keep in touch. 

luv_gardening

ONJ mostly affects people who have received IV bisphosphonates, and they are most often cancer patients. It effects more who have taken steroids or had recent dental work, but can also happen for no obvious reason.
There are many theories why it happens but it seems that once there's any damage to the jaw, the osteoclasts have been suppressed by the drugs and so they can't clean up the damage so it persists and gets worse.
According to Wikipedia... The International Myeloma Foundation's web-based survey included 1203 respondents, 904 patients with myeloma and 299 with breast cancer and an estimate that after 36 months, osteonecrosis of the jaw had been diagnosed in 10% of 211 patients on zoledronate (Reclast) and 4% of 413 on pamidronate.

Atypical femur fractures mostly affected those on oral bisphosphonates.  Bisphosphonate use and atypical fractures of the femoral shaft. May 2011

This study says there are five cases per 10,000 patient years so if everyone took it for three years that would be 15 per 10,000 patients. I've read of one case study in a patient who only took it for two years but I guess with those odds you'd have to be really unlucky.  The main side effects with oral bisphosphonates are damage to the esophagus.  Many have pain from the upper GI tract and muscular pains.  The incidence of hip fractures prevented by the drugs far outweigh the number of femur fractures.

Personally I'm doing everything I can to strengthen my bones using exercise, calcium, vitamins D and K, and strontium citrate supplements. If my next bone scan doesn't show an improvement then I'll be upping the exercise drastically. I just can't see me taking a drug that interferes with natural bone healing and has such a long term effect.   I'm happy for others to use these drugs as long as they understand the risks.

susandale

hi all,

mast last spg 2010, onc doc wanted me to take fosamax then.

i was osteopenic, but not severely, 65, take an AI, and ready to be active. I was aware of Strong Women, and got  into a livestrong  program at a local Y.

i asked 'we' wait and see. medicare does not do dexiscans more often  than every 2 yrs, but my bc/bs would pay if  doc advised it would be good.

also,  they are expensive but maybe $500., which  for some might be affordable if they really want the info.

i had seen dexascans  go up and down through the yrs as well. they had an answer for most of my reasons not to do it.

but i went ahead.

i jumped, treadmilled, pounded the ground, walked up hill, took a lot of vit d3 [ doc says i metabolize it fast], calcium, seaweed often but not often  enough, and eat a lot of  kale.

moved to another state; this onc doc wants me to take reclast. which is pretty unappealing to me, but neither  do i want to be stupid.

recent  dexascan looked better to me, but they  pooh poohed it. my spine is okay, and my lt hip is sl osteopenic.

my concern has been if it/reclast sets in w/ bad symps, you can't stop it. i dont mean the 3 days of flui-sh stuff.

so i am wondering .., has anyone out there been on an A!, is over 60, and managed to keep their bone okay.

my knees are ostearthritic, and i had a flare up a month ago, so much wght bearing has been lessened. tho i find activity is best, and i mow and walk 30-60 min 6 of 7  days a week

yesterday i hiked 3.5  miles to and from the repair  garage for my car, think i was better for it. i use [ my beloved !] trekking poles or wouldnt have been able to get my knees to go that far.  i havent done much w/ wghts the  past month, just upper body at home.

they want to do a dbl knee repalcement, but w/ a past malignancy i would be on coumadin for 3 months[ no kale and other good veggies!] and would be laid up enough so i fear i would really  lose  bone. so i'm hoping to put that off a cpl of years.

so this is my 2  cents. looking to see if anyone has really managed to keep  good bone w/ an AI.

looking for inspiration., I am going to ck out the Strong Women site.

tammy8

Hi Kathy,

I too am taking Arimdex and I am concerned about bone loss.  I have ostepenia and my doctor wants to start reclast once a year injections.  I don't really want too but I don't want to have brittle bones.  Just wondering about side effects.  I am going to finish my year long treatment with herceptin on August 19.  Anyone having terrible side effects from reclast? 

susand

Tammy,  I just had the Reclast infusion 4 weeks ago.  So far I have not experienced any of the bad side effects listed.  I did get the flu symptoms but they were short lived.  With that said, I am not sure I want to stay on this drug long term.  Some of the difficult side effects (brittle bones, irregular fractures, ONJ, etc) typically occur more with long term use (although that is not always the case).  I am hoping that by having the infusion I bought myself a year to research every possible option for my bones in the future.  The decision for me to take this drug was by far the most difficult one I have made regarding my health care in a long time.  To end a long answer to your question, No, the immediate side effects were not bad at all.

Moderators

Just a few links from our site, in case you are interested:

http://www.breastcancer.org/treatment/pain/meds/coanalgesics/bisphosphonates.jsp

http://www.breastcancer.org/news_research/ask_expert/12_2009/q33.jsp 

The Mods 

otter

Links made active:

Bisphosphonates for pain (in Stage IV BC): http://www.breastcancer.org/treatment/pain/meds/coanalgesics/bisphosphonates.jsp

Does Reclast protect against breast cancer?:  http://www.breastcancer.org/news_research/ask_expert/12_2009/q33.jsp

otter

yellowdoglady

I was given Zometa when I fractured a rib for no particular reason shortly after finishing cancer treatment and the worry was that I might have a bone lesion.  That wasn't the case, but I was sent to get a bone scan and while I wasn't osteoporitic I did show osteopenia.  So now I do Reclast by IV fifteen minutes once a year, and am happy for that.  I've had no side effects and did my research first, and asked my Oncologist about the jaw disintegration thing that has made the news.  He told me that the patients who have experienced jaw necrosis are inevitably folks with preexisting dental problems, and that having your dental care up to date can prevent that.  Also, he said that he had never seen anyone with dental problems lose a tooth that should have been saved or a piece of jaw beyond one tooth.  In short, this treatment should not be given to people who need serious dental work until that is done.  But it is the best thing available if your mouth is in good shape.

My sister whose bones are at a lower density than mine can't qualify for this good stuff.  The side effects from the oral drugs are common and can be serious.  Most people must try those first before they can get to the good stuff.  This is one of those times that being in a high risk group is a benefit of sorts.  Ask all your questions and get all your answers before deciding, but don't write it off because someone else had a bad experience.       

kt1966

I had zoledronic acid 2 weeks ago (I'm osteopenic & have started on zoladex & letrozole). I'm going to be having it once a year. My onc told me it helps prevent recurrence as well as preventing bone loss.

I had a miserable couple of days with nausea, vomiting, bone pain & a splitting headache. I had been warned about flu-like symptoms, but this felt like being back on chemo. I have since read that if you haven't had bisphosphonates before (oral) you can have a worse reaction, and that each time you get zoledronic acid (reclast/aclasta) the side effects become less severe.

Thank goodness, because in the midst of it I said to myself never again! But now I know that, I will have it again next year. I want to do all I can to prevent recurrence.

If you do have it just make sure you have good anti-nausea meds handy just in case! It makes all the difference (I didn't day 1, but did day 2). Drinking lots helps too (water, not alcohol! ) 

Moderators

Read the latest breaking news about Reclast in our research news which includes commentary from our Breastcancer.org experts.

 

• Reclast Gets FDA Kidney Failure Warning 

kt1966

Hi, has any one had back pain (mainly in the middle/right side) after reclast. I had my first infusion just over a month ago & had severe nausea & vomitting afterwards for 2 days. I may have become slightly dehydrated & I'm now worried it might be kidney damage?

I just used to notice it occasionally at night, but now I notice it all day...

I'm a bit worried- could be kidneys or mets?! I've made an appt with my GP (general practioner) but can't get in till next week...Don't see the onc until November. 

cycle-path

Kidney damage is a possible side effect of Reclast but it's considered to be extremely rare. What were the results of the blood test you had before the infusion? If the creatinine clearance was good, the likelihood of your having developed Kidney damage is very, very, very, very small. 

If you think your kidneys are actually failing you should see another GP sooner or go to the emergency room. Don't wait for your regular GP. 

kt1966

Thanks cycle-path. I am telling myself its unlikely to be kidney damage. Everything seems fine apart from that feeling of discomfort on the R)side. I tend to jump to conclusions, worst-case senario etc then work my way back to 'I'm sure its all ok'!

As far as I know all my bloods were ok before- the Dr certainly never said otherwise... And I certainly don't fit the other risk factors, I'm young & otherwise healthy. So I'm hoping for the best.

I have noticed a bit of pressure in my tummy too- may be reflux related, so I will take some omeprazole & see if that makes a difference. I'm itching to get my tumour marker retested too, to see if the new regime has brought them down. Sometimes it is hard to be patient- I want answers now!