Bone Mets Thread
Comments
-
AnacortesGirl and Whildchild,
Thanks very much. I wondered about the Tamoxifen. I am going to mention it to the doc.
I am going to get my first shot of Denosumab on the 31st.
Whildchild, I hope your time in the icu comes to a successful close very soon. Thank goodness for smartphones or you would be climbing the walls! Thank you for taking thentime to write despite the current circumstances!
For all here:
Scorchy
0 -
Scorchy: Maybe the Tamox IS working. Healing bones hurt - badly, I'm told. It's possible that your bones are healing and causing the pain.
0 -
That makes me wonder if mine are not healing. I haven't had any symptoms since this whole thing started. My tm went from 116 to 61 in 2 months, so that's good, but now I won't be seen by the onc again for 4 months after that (6 months after met dx).I'm sort of just assuming things are continuing to improve and the tm will probably down even more by that time. Should I be concerned about the 4 month interval? I just figured the onc must be confident that the tx will work at least that long. At the time he made the 4 month appt he didn't know yet that the tm had gone down. Maybe he just doesn't care what happens either way and figures we will deal with it then? He said "it takes awhile for them to show up as healed. We will do scans in 4 months. Guess I'm just feeling a little nervous. I realize the standard way is to do a drug and when u have progression you switch. I don't want to wait for progression. I want to stay on top of things and keep this confined to the bone for as long as possible. Do you think maybe I should ask for at least another tm maybe 2 months before the visit? ThanKs everyone.
Barb I think I know what u mean about being sad but not depressed. I don't feel depressed but I'm just not very happy like I used to be. There's always a dark cloud.0 -
Thank you for the info.
0 -
Lana,
Really? I didn't realize bones can sometimes hurt when they heal. (Darn bones! Cut me a break, guys.) I started to think that maybe it was the Tamoxifen just this morning. Yesterday I woke up from my nap with muscle spasms in my back. I figured it was because I had walked a lot the day before. But I stayed home from work today because of the back pain, and the spasms come and go.
Boy, I need to do something because it sure does hurt. I can't stay out of the office because of that darned Tamoxifen. Exactly why I call it T-Fuck. Grrrr.
I have a lot to learn about bone metastasis. Thanks for helping me along the path.
Scorchy
0 -
Bone mets hurt AND healing bones hurt? How are we supposed to tell them apart?
0 -
Don't forget that healed bones still show up black on bone scans. I'll admit I was a wuss when it came to the pain and I got a morphine pain pump installed. But, I'm just a wimp when it comes to the pain. On the bad side of the pain pump, normally they tell how bone mets are by the new pain. That won't work for me, but nobody is taking that pump out of my stomach.
I wish you guys the best.0 -
Unfortunately, it is sometimes hard for us to tell them apart, or at least that's what I'm told. I'm still new at this too. But I do know that healing bones can be very painful. I think other ladies with more experience than me with bone mets will chime in. Maybe there is a difference in the pain between the two.
0 -
Hey there! I have been on Zometa for the last 19 months. My doctor said that we'll stop after I've been on it for 2 years. My scans have been looking good and showing regression or stable each time. Have any of you stopped zometa (or similar meds) after two years? The doc said that research shows that two years shows effectiveness in healing and protecting bones from cancer. I'm wondering how long you guys have been on this type of medication. Thanks, and I hope everyone is doing well!
0 -
I was on Zometa for 2.5 years at progressively larger intervals (from every three weeks to every six months). My doc wanted me to continue given that I was on Femara which thins the bones but I stopped it because of joint pain. After a 2 year break my onc finally convinced me to get it again. Six months later he switched me to Tamoxifen. Now I probably won't be needing Zometa but am not really sure. Zometa can stay in the bones for a long time.
0 -
I have a question. I am 4 months post chemo and just feel so fatigued and just don't feel good. I had a Zometa treatment yesterday and that usually perks me up, but not this time. Anyone out there that had fatigue 4 months out?
0 -
GroovyWilma,
I've been on Zometa for 3 years monthly. I got some bad arthritis in my knee and asked to ease up on the Zometa. They now give it to me once every 3 months. I was told I would be on it for life. I'm also on Femara. The Zometa has kept my bone mets stable for the last 3 years. I had joint pain early on with Femara & Zometa, but not much after 6 months into it. Hoping it continues to work for a long time.
Terri
0 -
Anyone on Anastrozole (Arimidix) and feel nausea? If so, is there something else I could take? Going to my Onc. next week. I had a bone scan a couple of months ago and it was good. Markers were good 2 weeks ago. Not sure what this is, but it has been like this for three weeks now. Dr. wants me to get on Lexapro. Thanks, Barb
0 -
Hi all
Had first zometa infusion today, plan 1x month for two years. Seems like a long time lol. At half way point in rads to t4. Margins around t4 at t3and t 5. Femara on board. PET scan in my my near future. Hopefully this treatment will zap the cancer. Haven't had marker done yet. Dx end of august. Whew.
Whew again.0 -
Hi Diana, I think it will zap that cancer! My markers went down on femara and xgeva so yours should with those plus the rads!
0 -
Thanks HLB. Nip it! Glad you are getting good response too. Kick cancer to the curb!
0 -
What is going to be next???
Was at the ER at 4:30 this morning. The reason was that I fell out of bed. Can you believe it? I hit my head, right in front of my ear, on the corner of my bedstand. Needed 3 stitches and luckily no other damage. I'm just glad that corner didn't penetrate anything other than skin.
So this is the 4th time in the last 6 months that I've fallen out of bed. We have a memory foam mattress and it doesn't have a supported edge so if you lean too far over you just slide to the floor. With my hot flashes and sore pelvis I've been doing a lot of tossing and turning. One too many tosses or turns last night. And the night stand had been moved too close to the bed a few days ago after our cat had brought a bunny into the house and we had to catch it behind the bed stand.
So now I'm on the net looking at bed rails. I'm scared to death that if this keeps up I'm going to break something that has been compromised by lesions. Geesh!0 -
I am thankful for this thread. I haven't let too many people know my situation. Haven't had chemo so I still look the same except for my chest. A scarf hung around the neck and draped stylishly hide some defects. Last appointment with oncologist was ok my scans were checked and he said he saw scar tissue where the bone mets are. My next appointment is in four months. I am taking tamoxifen and having SE those hot flashes again (refused HRT when I did go thru menopause cause of cancer risk), and some really strong mood swings have to take ativan so I can be human around others. So far no bone pain. I get annoyed when oncologist asks how the pain is. So far no or little discomfort. I like hearing the stories of people who have lived with this for years Gives me hope that I will be one of them
Charlotte
0 -
I usually sit on the couch with my legs crossed (indian style) and use my blackberry to read this board. Many times I fall asleep while reading and one time I was leaning too far fwd and fell right off the couch head first, covers wrapped around me and jammed between the couch and the coffee table. Too bad no one saw it happen. It had to be hilarious. Sorry annacortes, not funny I know, but falling out of bed is funny when I picture it! I hope your feeling better and good idea about the rails.
0 -
This thread is so great. I will take Zometa the rest of my life. I guess that is because I am 74. I feel good except for the nausea I have mostly in the morning. I am on Arimidex and Zometa once a month. If I could get rid of this ickey, feeling life would be pretty good. I have been lucky because my pain is minimal. Onc put me on lexapro hoping the nausea is stress related. Love reading all your stories. Thanks again. I am on generic Arimidex. Do you think that could be a nausea problem?
0 -
Barb it is known that one of the SE's of all the AI's is nausea so it's more likely that than the stress.
I'm just on Femara and have been for two years now and fifteen months on Arimadex before that. I don't get Zometa although I did try oral Bonefos (another Bisphosphinate) but I had a very bad reaction to it. I take Vit D and magnesium and hope that is enough to keep my bones strong. I have another DEXA scan scheduled for late December so I guess I'll find out then.
Love n hugs. Chrissy0 -
Barb
Had my first zometa infusion Tuesday afternoon. Took about 50 min or so. I hydrated really well before infusion and during. Felt ok Tuesday night. Had a few beers.lol. Next day cycled and went to rads. Around noon started to feel sick. Thinking at that time. " forget this drug". Took an advil and felt better. This morning felt icky but took an advil and felt much better. Thinking the advil really helped with flu like symptoms and also lots of water. Will be doing zometa 1x month for 2 years. On femara. Rads on spine ( had very large tumor on T4). Try the advil and hydrate. Maybe will help.
Best0 -
I am getting xgeva once a month with no SEs at all, except the third one made me extremely tired the day of the shot and the next day. The next one did not do that though. Maybe xgeva would be better for you guys and its just a shot, not an infusion. I think some insurances give a hard time paying though.
0 -
I wish I could have seen that, HLB! Feeling fine this morning -- got a nice lump from the swelling.
Went to rads and it was doc day. Nurse and doc were asking if I was getting relief but I had to say no. Pain isn't all the time -- it comes and goes. Three more to go.
Lanagraves - I also asked if pain is ever associated with bones healing. They had not heard of that from their patients.0 -
Only two Xgeva shots so far and no problems. I also did two Zometa before ins. cut me off and didn't have problems. Asked that the Zometa be infused for 30 minutes instead of 15 based on advice of others that claimed it reduced SEs.
0 -
I wish I could find the threads discussing healing bones and pain. There are quite a few ladies on here who have experienced that. When I asked my onc about dizziness as a SE of Tamoxifen, he said he'd never heard of it from any of his patients. However, I know several ladies (including myself) who have experienced it, and it lists it plainly as an SE on the enclosure from my pharmacy.
0 -
I posted a while back to say that I was only going to get 6 doses of Zometa for the mets in my sternum, the last one of which was due next week. But this week, my onc has told me that I'm going to stay on it due to my sternum being described as "moth-eaten" on my last scan plus the fact that my sternum actually broke 6 years ago when the cancer first showed up there... I'm not sure how long I'll be on it now - I think we're just going to play it by ear according to what future scans show.
0 -
I am going to ask my Onc about xgeva. My problem is that my tumor in t4 was huge. Apparently the zometa helps the bone repair as if it was a fracture. I have had no pain in the cancer vertebra (doc said weird b/c it was so large) and no pain assuming the cancer is getting zapped. 25 rads. Only 7 left. Hope the rads has done it's job. I like hearing about all of your experiences because I am just learning about bone mets. Best to all. Kick cancer to the curb.
0 -
Hey ladies,
I am on pamidronate and dr told me to take a tylenol before infusion might help with the flu like symptoms. First one, i did and felt ok, second one i forgot but still felt ok. Just something u might want to try if you do get that s/e.
I also have heard that healing bones hurt so not sure how we are supposed to know the difference. Mets to spine, pelvis and ribs and yes some days they sure hurt!0
