Bone Mets Thread
Comments
-
Anyone heard from Rangermom? Just wondering how she is doing, thinking of her all the time. Thoughts and prayers are with you, Rangermom.0
-
Lynn1234, He's a v. difficult man to make appt with and I doubt if I'll see him before treatment. Because he's perceived as being the leading onc/researcher in bc here I stay with him. I am so worried though. I'm going to day hospice tomorrow and I'll ask them for advice. Take care {{Hugs}}0 -
Many hugs and prayers to you too.0 -
Hi,
I have been thinking about Rangermom too. Hoping she is just too busy with a new grandbaby to go on line and that all is well.0 -
Rangermom-- Wondering how you are and what your new plan is. I'm hoping you are spending time with your family and are already spoiling your new grandbaby. Sending hugs and prayers your way!0 -
I've been wondering how you are too, Rangermom. Hoping there is a new baby that is occupying all your time.0 -
I've been AWOL for a few weeks, but I just want to say that I too hope that all is well for you RangerMom, and that your enjoying your new grandchild
Nicky0 -
Hi all..hoping to hear that Rangermom is doing well and enjoying the grandbaby!
I realise that I have it really really really good and have no real right or reason to complain. However, sometimes I need a brief whine. So here it is: I am very tired of the osteonecrosis in my jaw. It was 99% healed, with no bone sticking out of my gums, but I could tell there was still some residual infection. I asked the oral surgeon for another round of antibiotics in the hope that it would clear it up once and for all. But he said "no, let's see how you go and I'll see you in three months." I asked if I could have a "just in case" prescription because I was traveling (for work), and he said no. He said he could see a sharp piece about to come through and if it was caused by something other than the infusions, he would snip it off, but because of the cause, it will only help temporarily so he wouldn't do it. He had done it before (snipped off a sharp point) although "it isn't recommended" for my condition. It helped immensely. I reminded him of this, and he still said no.
So, off I go on business travel, and sure enough; big chunk of very sharp bone comes through. Had to wait until Friday to see my GP to get the antibiotics I asked for in the first place. And I'm just so tired of having a sore mouth. The bone cuts my tongue and it hurts to swallow, eat, drink, etc. So I'm whiny because I hurt and because I'm tired of doctors who won't listen to their patients. It's not like antibiotics are addictive or something you can sell on the street! And what I've read says that snipping off the sharp bits isn't usually done when the infusions are the cause, so I know he's right, but still...
Ok, done whining.
And I realise I have a lot to be thankful for and that overall, I am in pretty good shape and am very blessed. So (not that anyone has a choice in this matter) thanks for letting me whine to someone(s) who understand that sometimes this whole thing just makes one quite grumpy and out of sorts.
If anyone has any advice about the jaw thing, I'd appreciate it. I'm rinsing after every meal/drink with antiseptic mouthwash and salt water, doing all the stuff they tell me to do, and using a mouthwash with litocane in it to help with the pain (dab it on with a swab). Any other suggestions appreciated!
Wishing all of you the best!
Terre0 -
Terre, so sorry about the ONJ. I don't have any advice, but I hope it heals soon.0 -
Terre,
I don't have experience with ONJ - hopefully others will be along that do. I did want to address something you said in your post though. You said you felt like you had no right to complain - I'm assuming because you feel that your situation isn't as bad as others that are having such a hard time around here. IMO - and I'll bet I speak for the others too - you have every right to complain/whine/rant, etc.! First of all, I've always thought that whatever someone is going through - regardless if others are worse off - it is what they are going through right now - it's still important because it's what they have to deal with in their reality. Secondly, you are a stage IV sister and this is the place to come to share these things and get support! I do know what you mean - I feel the same way sometimes because I'm just starting my stage IV journey and still doing pretty well, physically - but we are all here for each other and we are all dealing with this - wherever we are in our journey. It is very difficult emotionally for all of us - and we each have our own issues to deal with that wear us down.
All that being said, the ONJ problems you are dealing with sound awful! You aren't whining unnecessarily - it's a lot more than so many people have to deal with - amongst the general population, being stage IV at all and having to deal with all the pain and hassle (with the onj and the medical maze) would seem like a lot (because it IS a lot to deal with!).
So, anyway - I'm thinking of you and keeping you in my heart and prayers. I hope things improve soon so you won't have all the pain and problems with the onj.
Thinking of you and sending light and love and prayers,
Amy0 -
Any one know how big a difference using a different lab for tumor markers can make? I had to see ONC in different town as he is not coming to mine anymore and they use a different lab. CA-29 was 50, now 49.
Glad it is not higher but wish it was lower. Thanks Redroan0 -
Thanks Amy and Mary. The support means a lot and having a place to come and occasionally whine means the world. I know that compared to what others here are dealing with, I have it really good as I'm still in pretty good shape physically, mentally, and emotionally. And as I am sure many of you can relate to, if I whine to my non-Stage IV friends, they either freak out or shut down because it scares them so much. The support here is fantastic and I appreciate you all.
Redroan, I don't know about difference in labs with tumour markers, but I do know about differences in labs. I'm an environmental engineer and we use labs for chemical analyses all the time. You can get different results from different labs, depending on methods, instrument precisions, sampling handling, etc. Both false positives and false negatives are possible. With regard to tumour marker labs..not sure..but chemical labs, typically we assume 10% margin of error for the lab, 10% to 25% for sample collection and handling, etc. I have a friend who works in a med lab and I'll ask her what the typical margin of error is for the test and I'll let you know what I learn. I'm glad it's not higher, but also wish it was lower!
Terre0 -
KiwiCatMom, Glad that you let us know what was going on with you. I also don't have any experience with ONJ, I am coming up on 1 year of zometa and I hope I don't end up with the problems you are having. The side effects of these drugs are scary. I hope your doctors start listening to you. That is so frustrating! Hoping your pain and mouth clear up and you are feeling better soon.
Rangermom, hoping you are busy enjoying your grandchild. Thinking of you!0 -
kiwicatmom,
Good to hear from you. I didn't know you had onj. I hope you get some relief soon. I'm glad this has shed some light on the problems with long term bisphosphonate use. There appears to be increasing evidence of the problems it can cause, femur breaks in addition to onj. Additionally early studies that indicated that it offered some protection against bone mets never panned out. I had my last Aredia infusion recently. I admit to feeling a little bit insecure about not using it in addition to Arimidex, but the risks go up the longer you use it. Hope you continue to heal and thst your docs listen to you in the future!
Caryn0 -
For the Osteonecrotic sharp bits: Could you use some dental wax to keep it from poking your tongue? They sell it in the dental section of the pharmacy, and my son uses it to cover sharp bits of his braces in between dental visits. You might have to make a pretty good sized plug of it, as it won't adhere to mucous tissue, but it will grab on to the surrounding teeth. Or, you could get a cheap mouth guard and sleep with it in to protect your tongue.
I empathize completely. I have a "sharp" molar from years of jaw grinding, and if I sleep without my bite guard, I wake up with a lacerated section of tongue. It's not huge on the list of cancer insults, but I could do without it.
Hope you heal up soon.0 -
Thanks so much for the good thoughts and great advice! I'll definitely look at dental wax and check into the mouth guard thing. Sorry to be whiny about it. I think part of it is that when the fear/depression/anxiety threatens to overwhelm me, I ask myself if I'm ok right now. And this damn ONJ reminds me that I'm not ok and it makes me annoyed and whiny. It's not as bad today (the pain or the whines) and the antibiotics are doing the trick. The gum is starting to heal over the sharp bit again.
My new oncologist doesn't believe in the bisphosphonate infusion due to the side effects. Haven't seen him since early Sept; still waiting for the CT scan. That's probably part of what's making me a bit grumpy too; definitely on edge wanting to know what's going on. However, he doesn't want to see me until after the CT scan. I keep reminding myself that if he saw something on the bone scan or in the blood work that concerned him, he would have ordered an urgent or priority CT scan instead of routine (which typically involves several months of waiting). I'm going to ring the hospital tomorrow and see if they have any schedule info and if it's not soon, I'll ring his office and see if I can get a message to him.
Thanks again for the advice and kind thoughts! I hope all of you are doing well! Sending you good energy.
Terre0 -
Amy, you are so right that each of us has our own burdens, and we come here to support each other, not to compare whose burden is greater!
Kiwicat, hope your mouth is doing better day by day.
I got Zometa 3 times, and then got switched to Xgeva, which has been much easier on me! I have had 2 rounds of Xgeva, so by my counting, I have had 5 treatments, maybe just 7 more? Don't most women get about a year of these drugs to prevent "skeletal related events"? Here's hoping my calculations are correct and I am nearly halfway through! Risk of ONJ goes up with any of them after a year of treatment, between 1-2% for the first year, then over 4% per year after that.0 -
Amy,
I've been on Zometa for just over 4 years now. I did this every month for 3 years & once every 3 months the 4th year. I did have recurrence of bone mets recently & onc wants me to do Zometa every other month now. No problems with it yet.
Terri0 -
Linda,
It's more than just ONJ. Earlier this year, there was information published on increased risk of femur fracture. This appears to be true of all the bisphosphonates. I'll try find a link to the info and post it.
Caryn0 -
I have heard, while I was at a breast cancer conference recently, about the increased risk of femur fracture. However, I was told the risk is still very small and the benefit to the bones overall from bisphosphonates is worth it. I haven't had any ONJ problems just a lot of bone ache for 2-3 days after the infusion.0 -
Yes,the risk is small, but it's worth considering. Almost all the mo's at my medical center are now limiting the use of bisphosphonates to about 24 months.
Caryn0 -
Rangermom,
I'm thinking of you too. I hope all is well and you are spending lots of time with the new grandbaby! Post pictures when you get a chance.
Keeping you in my thoughts and prayers, Amy0 -
Xgeva is not a bisphosphonate - it is an antibody against the RANKL. RANKL is involved in causing bone removal, so the antibody inhibits this action, thus preventing bone degradation. It seems to have fewer and milder SEs of that "flu" type syndrome, but it is still associated with bone pain and ONJ. I don't know if it has the same risk of atypical femur fractures as the bisphophonates. Studies comparing Zometa and Xgeva showed Xgeva might be a teeny bit better in cancer patients for preventing those "skeletal related events" but I suspect it is a lot more expensive - not sure about that.
I do know MO had to get pre-approval from insurance to switch, and she used those statistics to get them to approve it. They might not have approved it just for my "comfort" and avoiding the really bad SEs I got from the Zometa. *sigh* I truly wish I didn't have to do these meds at all!!!!! Some days wish I had never heard of them and didn't have to learn anything about them. Would rather spend my time taking a course in philosophy or art history or something else ....
What makes me really angry is that there is an SERM that is similar to tamoxifen and faslodex in that it stimulates bone formation but inhibitis estrogen positive breast cancer. It is available in Europe, but not in the US. It was recently approved IN COMBINATION with estrogen for the treatment of hot flashes and osteoporosis, but because it is only available as a combination drug, it is absolutely contraindicated for Er+ breast cancer, and yet it has been shown to be more effective for bone mets than the AIs and Afinitor combination. Really ticks me off.0 -
oops, sorry Linda. Didn't see that you said xgeva. Thought you were on Zometa. Hey, they're both near the end of the alphabet!
Caryn0 -
Ok , I know this may be a repeat, but All of a sudden my great toes looked bruised. I did not injure them at all, I am assuming it is from chemo, but are they gonna fall off? Not only do we loose our hair we have to loose our toenails too. thanks Redroan0 -
My big toes look pretty crappy too but so far they haven't fallen off. I was pretty certain they were going too but so far they're hanging in there. Let's hope our toenails hang in there better than our hair did.0 -
You made me laugh! I hope they do too, Cause my hair sure didn't!
0 -
The nail of my third toe came off and has since regrown in a peculiar way. Didn't cause me any problems, I just put a bandaid on the toe for a few days. The rest of my toenails look horrid but I varnish them and it's winter here so who cares... My fingernails are another story though, they feel really tight and uncomfortable. They're shrinking and curling into the sides - I'll have talons before too long more (if they stay attached) - despite moisturising and varnishing
Does anyone have problems with their actual toes? A few of mine are becoming numb/paralysed as well as the ball of my foot near them and they are sort of bunching up. They feel weird as they don't respond to my motor signals. I don't have problems with balance but I wonder if this will spread and become permanent. It's such a checks and measures thing, taxol is keeping me stable (touch wood) but how much peripheral neuropathy etc is it safe to tolerate?0 -
Yes-My toenails look awful! They look badly bruised...is it from the chemo or the neuropathy? Is the circulation being cut off or is it nerves...either way I also wonder how much is ok to tolerate?0 -
Aoibheann, are you still on Taxol? This could be CIPN- chemo-induced peripheral neuropathy. Tell your MO!!!! You may need a dosage reduction or holiday for healing or you could end up with permanent problems. The Taxol can also affect nails, so if you are getting that WITH afintor, it could be compounding the nail problem as well. If you are not still getting Taxol, when did you finish? You can get CIPN quite a while after finishing chemo as it can take a while for the damaged nerves to actually die - they function for a while even though damaged, but finally die - this is called a "coasting phenomenon".0
