Bone Mets Thread
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Ladies, I have a question. I have my last crown prepped tomorrow, won't get the actual crown for a week afterward. But they have scheduled my first shot of Xgeva for the day after, Wednesday. Is that too soon after getting my tooth prepped for a crown? My understanding is that as long as it's not a root canal it will be ok? Is that right?
Would appreciate any insight you can give me.
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Gracie, I worked as a dental technologist and since prepping for a crown only involves grinding down the tooth structure I'm pretty sure having the Xgeva the day after will not cause any problems. I think it's extractions mainly that are worrisome as that involves the bone. Hoping someone else will chime in but according to my dentist any other dental work such as a filling or crown prep would not be a problem. Wishing you the best!
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Carol so nice to hear from you again. I'm sorry Faslodex let you down that is the only drug I'm getting as well right now. Been nine months and I think it's coming to an end. I think it definitely needs to be paired with something. I've heard good things about Xelodalets hope for twenty years NeD . I always why figure aim high😊.
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Carol, I'm so happy to read your post, every word of it. Wow, you did a lot of things in a short time. Sending you energy and best wishes on Xeloda. Hugs to you.
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Hi Ladies, Time for me to check in on this thread as my recent scan has shown a spot on my L2. Blah.......did not exactly make my day. My Onc want to start me on Xegeva too which makes me sooooo nervous about the jaw bone loss. But oh well, here we go. Luckily we have sold our larger home and found a nice replacement about 30 minutes away. It is going to make my life so much more simple. Time to unload!
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Artist, don't be nervous. Jaw problems with Xgeva is rare. If you haven't already done so, make sure you take care of any major dental work before starting Xgeva. A visit to the dentist prior to starting this tx is recommended.
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Thanks Linda and I will!
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Gracie, my dentist says that work below the bone is what is trouble. I think you're going to be ok
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Hi all! Well...MRONJ is a tricky thing. We're given to understand that only extractions put us in danger, but that isn't true. It's basically any trauma, and that can include getting an anaesthetic needle too quickly (hello, NHS!) or having a long-term infection. It can even happen spontaneously. It can also happen to people who don't take bisphosphonates or RANKL inhibitors at all...you know, like dry socket...but it usually heals quicker in those people.
Mine is an absolute nightmare. I have a large maxillary sequestrum (loose piece of jawbone) and an oro-antrum fistula (an unwanted communication between the oral cavity and the sinus). It was explained to me that the loose piece is held up by soft tissue and a tooth root, because one tooth is half in good bone and half in necrotic bone. I'm waiting for a date for surgery under general anaesthetic. After that, they are talking about six weeks in hospital with IV antibiotics. I will lose two teeth, one I just paid for (sanctioned root canal) and another with a crown that will show when I smile...or rather, won't show when I smile, but the big gap will. If the fistula is large, I may have liquids I try to drink come up through my nose. It could also change my voice and make me nasal...I've always loved to sing. Worse than this news, is when the oral-maxilla-facial surgeon says to me "I hope we don't make it worse..."
I didn't have an extraction, by the way, but I do think I wasn't treated properly. I would recommend that if you have any new dental issues at all and you are on these drugs, insist on a cone CT right away and some major long-term antibiotics. The "experts" here would wait until my cheek was puffy, then hand me 5 days worth...I don't know if the MRONJ became so severe because of the infections over the last two years, or the four attempts at a root canal, or a careless injection.
Oh, and how it all started? I had a clean bill of health from my dentist before starting the drug. I took it for just over a year when...get this...I ate a coconut candy at work. A bit of coconut jammed up my gum and by the time I got home to floss, it was already sore and puffy. That turned into the abscess from hell and the rest is history...
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The short version, my SIL was remodeling my laptop! Got it back, and read all your posts. After Onco's visit last week, she agreed that at least the Xeloda gave a bump to some of the lesions. So we'll stick to the program. Many were new lesions, many smaller, many larger, some disappeared, really weird. Next scan in the end of the month. Dani is dealing with it as always, just looking forward, and cancer be damned. She's renovating aesthetically rooms in the house, we are very busy!
Patty prayers for no pain! Dilaudid? Would that be helpful? Warm hugs sweetie.
Kathryn thanks so much. You made me have a chukle. At least as you said you have the tree! Good for you. Hope you don't hurt too much. How soon can you get the info to the MO in Chicago? I read this book A Series of Catastrophes & Miracles BY Mary Elizabeth Williams, she was one of the first to have Immunotherapy at Sloan, it was a complete miracle. I think you should follow up asap to get the facts you need.
Pwillmarth how thoughtful of you to put together all this info about AR+ . Interestingly, Onco is not excited about AR+ therapies for Dani's case. She insists it has not been proven helpful. But she was supposed to have the biopsy slides looked at, but disappointedly at our last meeting last week,somehow, yep, the slides were not requested. So now we are weeks off. One clinical trial that maybe would be for her, she is excluded from because she has brain mets. And was treated for brain mets. One of the info you sent has 60 pages! It sure keeps me busy. And your info on the scans, is terrific, thank you sooo much, it's so helpful. Dani had the mask many times, she's been having rads to the brain area for 2 yrs, she had Gamma knife and Stereotactic. She also just finished 12 tx to the brain and for the mandibular, which left her with many mouth sores. She's having another Brain MRI next wk, yes, for the brain this is the best modality. But really, we learn so much here, thank you so much. How are you feeling now?
Dee it's the MOM thing! But thanks for the support. Thank you for sharing the good news about Terre. Regarding the chills, it's been so long that Dani is so cold, that it just became the new norm. Scarfs and blankets all the time. I wonder if there is one answer, because this has been throughout numerous different treatments, so what gives? They could just send out for a TSH test, and you will know in no time if it's the thyroid. They could just add to the other tests, not big deal, just be aware that my daughter was losing a lot of weight very fast, they thought it's the thyroid, lo and behold it came back crazy numbers, but besides the weight loss, (which she told them of course she lost, because she was hungry but could not eat to mouth full of sores after rads), she said they have to repeat the test, and it was back to normal, so gotta be watchful of these tests.
Deanna hope this pain is gone by now. How about you get to reciprocate? Maybe they would think twice.
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Babs now I got my comp back, fingers and toes crossed for good results on Taxol. Zar thanks for the wonderful take on the ablation etc…there is no way I could get Onco to consider these things for Dani, she kept saying systemic only, they would maybe maybe consider if 1) it would be just single met or 2, or if it would not be mets. We would have loved to be able to get them zapped, they don't want to touch it. Oh my, I just read about Seinfeld and your dad, that really makes me laugh. Seinfeld with his absurdities still makes me laugh, and the funny thing is, the younger generation, my dds watching now on their own time, even on the way home from work, and having a laugh in a NYC bus! It really tickles me.
. Zar I still have to read Best bird advice, the thing is it seems at this point Onco is not ready to run with it. She went to the San Antonio seminar, she is picking heads, so let's see if she comes up with something concrete.
Lindalou, keep us posted on the MRI ok. At least you will know what you dealing with, meds or s....
Amy wow counting down to such a beautiful day! How exciting! Just to entertain all the visitors, I give you lots of credit! Enjoy every minute. I at the Xeloda thread also. Great ladies.
Carol hey, so nice to have you back!! We'll see you on the Xeloda thread. How wonderful you had this good time with the kids, and being near them will be a life booster, best wishes. Of course the move was hard, and leaving your parents, but it was a smart move.
Wendy always love to hear from you. Costa Rica it is, how fun!
Mary are you going to be on the Xeloda thread? I'll check soon. Xeloda did help a lot of ladies for a long time, wish you the best.
Anita sorry you have to be here, but you will get a lot of support and love.
Delvzy rads could make you very fatigued, give it sometime, but as you will see from many wonderful ladies here, walking is good for you, if you can.
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Kaption, best of luck on your MRI. Don't wanna be negative, but for my daughter it was the transgeminal nerve, that seemed to be shooting at the nerves, they gotta look very closely, also there was a lesion in the frontal lobe that was having some affect there too, finallyshe had radiation, they always try to be so conservative, and finally it has gotten much better. But who knows, there is a small thread about that on BCO and certain ppl it does not show up.
Annie waving at you! Linda Waving at you.
TarheelMich Sorry Letrozole is causing you so much pain. Deanna is on the button regarding different brands. You were on a trial before? I am looking for AR+ trials for my daughter. We don't know yet if this is a receptor she has, Onco's office is dragging their feet with the request of slides etc…but if she were to have that, the question is she is Triple Positive, so they are really aiming for Triple Neg and AR+ trials, what's your status?
Carol hey, so nice to have you back!! We'll see you on the Xeloda thread. How wonderful you had this good time with the kids, and being near them will be a life booster, best wishes. Of course the move was hard, and leaving your parents, but it was a smart move
Artist congrats on selling the house! Xgeva seems to be to go to for bone mets. As Linda said it is rare to have problem.
Jen it could be that it it's the bone healing. Linda HI, I for sure bypassed someone, take good care.
Hey Gracie that's the spirit.We make the Holidays memorable, not the other way around, I do it all the time. I also like to book the meet up early, so my daughter looks forward for the day when her sibs will get together
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Annie thanks so much! I had the prep for the crown today and will have my first XGeva tomorrow.
Momall, so glad you got your computer back, and it sounds like Dani is getting a little bit of traction out of xeloda. I will continue to keep her and you in my prayers !
For those ladies on Xgeva or have had it before is there anything I need to know before the shot tomorrow? Lots of water? askto give the shot slow ? is there anything at all or it's just a shot
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Xgeva shots have never bothered me at all. I get it in my arm. Be sure the nurse gets it warm and goes slowly. Much easier than Faslodex.
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Thanks Kaption! When you say slow? Like how long?
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Wendy and Ziz- Hope your meeting and the surfing and the sunshine are perfect! Let's live 100%!
Babs- I can totally picture your Seinfeld moment. Thank you for the beautiful photos of Paris. Such rich times and memories with your family.
I'm so hopeful your new treatment plan will soon get you back to stable!
Patty- I hope you feel better soon!
Gracie- You go girl! So glad you got in the car and made the trip to see family! The Xgeva shot should go in as slowly as possible. I also try to drink lots of extra water before and after. I've had extra fatigue the next day.
Hi Linda, Photogirl, Momallthetime and Amy. Thinking of you all and sending hugs.
Milaandra- It was good to see you but so sorry to hear about the jaw problems. Sending good thoughts and hope your dental team steps up to help
The melanoma was a recurring mole on my back/shoulder that looked extra dark. I meet with a surgeon on thursday. They want to do a sentinel node biopsy. I'm trying to sync up the surgery with a time when my counts are decent (about four days a month). I had to take off an extra week of Ibrance this month because neutrophils dropped to .9. Seems like a bad idea to create a big wound when things aren't healing.
Scans the end of this month so I will wait to share the melanoma news with my girls until after all the news is in. Planning to enjoy the holidaysand keep the social calendar full
On the good news side, my DD2 had her in vitro procedure today. In nine days we will know. They have waited a long time and I need to be here and be healthy enough to see her dream come true and love a new grandchild.
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Gracie, my nurse always let me sit and hold the Xgeva shots in my hands for about ten minutes before she injected them, so the liquid would warm up to body temperature. That made a lot of difference for me. When she was shooting me in the bun, I always put my weight on the opposite leg from the side she was shooting, to relax the bum muscles where it was going in. She also told me to "never ever ever" put ice on it soon after injection, but rather to go for a long walk and help it stay warm so the liquid would disperse into my tissues faster. So I usually went over to the mall and did a lap or two before going home.
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Lulubee, you may be mistaking Xgeva for Faslodex. Xgeva is not given in the muscle, it's given just under the skin ( subcutaneously) in the upper arm or fatty part of abdomen. It's true that it should be given warm. I stings a bit going in but is very quick and easy
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Gracie,
As difficult as this sounds, getting Xgeva in the stomach has been pain-free for me. I've never had any difficulties getting it there. It's quick and easy.
I had it in the arm for close to a year when one of the nurses asked if I ever tried it in the stomach. She practically guaranteed it was easier than the arm and she was right! Good luck.
Amy
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Thanks Amy, Xgeva coming up later this month so I may try a new site :)Hope this is a good day for everyone!
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Thanks to everyone for the suggestions I may try it in the stomach I've had shots there in the past I think it was like for my blood counts but I was going through chemo and it really wasn't too bad . Sounds like other than warming it up that it doesn't take very long at all or is that not Xgeva that has to be warmed up
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Gracie, have them warm the Xgeva. It's just a quick injection (they should push it slowly but I think mine usually takes under 20 seconds). Everyone is different in terms of how they react, but it seems like many people have an easy time with it. I don't notice any side effects. Hoping this is the case for yo
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I'm starting the Xgeva on the 12th. I haven't been able to get my dental work done yet - I need a cleaning and one extraction right now plus multiple root canal / crowns (can't afford to do those yet). Will it be detrimental to the extraction a week after the shot?
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momallthetime and deanna: thanks for suggesting other brands of letrozole (Femara). I tried two and after my experience with another AI, felt like I wasn't going to get relief. I do wish I could have experimented more with brands, but was feeling bad, never taking more than every other day.
I also found a drug trial using testosterone to relieve pain while on letrozole. Did I see it on these boards?
momallthetime, the androgen drug trial just started, my oncologist is the head researcher. She specializes in triple negative bc. I am not a triple neg. The trial is for both estrogen positive and negative. I don't know if the trial is right for me. I'm waiting to talk to my MO in a few weeks. It seems to be more for people who have failed on treatments. In my case, I have failed to stay on it; it's not the treatment has failed to produce results.
I am researching how androgen works in the body, learning a lot, even specific to my own body and my own cancer ... there iswas so much I didn't know.
Here's a link to the drug trial.
https://www.mskcc.org/cancer-care/clinical-trials/15-289
Btw I LOVE my oncologist. Tiffany Traina at Memorial Sloan-Kettering. I give her all the earthly credit for keeping me alive 5 years.
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Hi ladies... just checking in. I feel like I never contribute to this thread, but I do read through everyone's posts every time I catch up and always like to see the familiar "faces". On Xgeva - I've been on it for four years and never had any SE's. As others have mentioned - do have it warmed up... I have mine in the back of my arm. It only takes about 20 seconds and doesn't hurt/burn as long as it's injected slowly.
Nothing really new with me except that I am splitting my time between my old home (Colorado) and new home (Northern CA). We are renting a place in Aptos - near the beach - until we figure out where we'd like to buy. I am not sure the fog/damp air is good for my bones. I tend to get a little more achy here than I do in Colorado, even though it's 20 degrees and snowing back there and beautiful and sunny here! Go figure. I feel like I am 90 today. We are headed on a sailing trip through the British Virgin Islands over the holidays.... a special trip to celebrate joint 50th B-Days for my husband and me and I cannot wait for the sun and the warmth!
Hugs to everyone. I'm sorry I never manage to send special messages to everyone individually, but do love this thread and appreciate all of the input and knowledge! Amazing group of women.
XOXO
Andrea
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Can't remember who was asking about Xgeva SEs. Important to hydrate well the day before, same day and day after. Sometimes it's a walk in the park for me. Other times, a lot of fatigue and achy with nausea. Doesn't last more than 48 hours. So don't be surprised to have some discomfort but I think I'm one of the rare ones that reacts to it.
Edited to say: Ronda, I've tried several brands of letrozole. The Teva generic made a huge difference for me in terms of pain and stiffness. Then our pharmacies ran out of stock and switched to the original Femara which is even better for me. I also take turmeric and boswellia for inflammation which helps a great deal in addition to my pain meds cocktail.
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milaandra and bonniemen,
I think ONJ questions get lost in here, because it's pretty rare and most of these great bone mets ladies can't really contribute to that conversation. I think if you start any new thread with ONJ in the subject, you'll attract more people who have had, or are having, experience with this. Milaandra, that sounds horrible. I've hadn't my own horrible ONJ nightmare, which thank goodness is over. Bonniemen, I'm not sure one week on Xgeva will cause a problem, but I don't know that for sure. All that dental work you need, well that does make me nervous for you while on this drug.
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Thank you to every one of you who responded to all of my questions regarding the dental work and Xgeva. I truly appreciate it and appreciate you all for your loving support
Well, the first one is in the books. For good or for ill, it's done. I'm not having any type of SE yet and I got it this afternoon about 2:30, so I hope that means I won't. The nurse felt the bottle and said it was room temperature, and she did push it slow. I had just the slightest bit of burn, but not hardly noticable. All in all, it wasn't bad. Hoping and praying I get some traction from it, and it does what it's supposed to do. Bonniemen, I got all of my dental work done before starting Xgeva, except for yesterday the dentist drilled a tooth and prepped it for a crown, but from what I understand, that doesn't run the risk of ONJ, and my dentist is really educated on the risk, which makes me feel so much better. Hoping and praying you are able to get yours done.
Babs, you have been on my mind....praying things are going ok.
Blessings to each and every one of you
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Mamma Ray...just saw your post a few pages back regarding Zometa infusions. I have been getting it monthly since May. I had flu like symptoms the day after my first dose...lasted only 3 to 4 hours...second dose reactions very mild-mostly aches.Since then no reactions at all...I make a point of being well hydrated before and after the infusion. Hope Zometa is also easy on you !
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Ronda
I also have Traina for my MO and love her positivity. It really helps!
Babs
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