Bone Mets Thread
Comments
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Barb312-- yes, I am on Aromasin now (also Afinitor and Xgeva). I took Femara for 18 months, then Faslodex for five months. I do think I'm a little more rumbly in the tumbly now, now that you mention it. My bootaytay is for sure bigger than it was 8 months ago...
The thing I notice most, though, is that my face is puffier now. Especially around my eyes. When you're on this many drugs it's hard to know which thief robbed the dime store, so to speak, but I have wondered if these bug-eyes are a steroidal thing from the Aromasin. I guess I should ask the gals on the Aromasin thread if any of them have puffier eyes now, too, huh?
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Steroids will definitely make you puffy. Its called moon face. I hate them because they give me roid rage.
Lulu so glad to hear about Kendall. Sounds like she is out of the woods, thank God. What a scary thing to go through!
Dads hand is completely back to normal! He has been playing guitar since the age of 10 and I think he was worried about that the most. His friend Frank, who always gets things mixed up, told his other friend John that he had a brain tumor and poor John pulled his car over and cried. Leave it to Frankie!0 -
Hlb so happy your Dad is doing so well!
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Happy Belated b-day, Macy!
HLB - so very glad to hear of your dad's quick recovery! Wonderful news after such a scare!
Anacortesgirl - so happy your TM's are going down!
Had my 2nd Xgeva shot last Thursday. So far, so good on that. No problems. Had terrible lower back pain, (I have 3 bulging disks along with cancer on L5) but was lucky enough to get invited to our friends' hot tub saturday night. Sat right in front of one of the jets, and the next morning, the pain was gone. I really think at this point the back pain is from the bulging disks, not the cancer, since it resolved itself pretty quickly after the hot tub.
My TM's on Xeloda and Tamoxifen are going down as well. Every month they go down a few points. I started at 37, and now down to 26. The highest they had ever been was 16 when I had my bc 12 years ago. So when they jumped to 37, for me, I knew something was terribly wrong. Then it got confirmed. But they're moving in the right direction now.
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I got my ca27-29 results. 33!! So that is two drops since nets dx 6 months ago. 116 to 61 to 33. My parents are just over the moon! This is back in the range of when I had no eveidence of cancer for 8 years. They jumped around from 19 to 32, usually in the 20s.whole family sooooo happy! Liz, glad yours are down as well! We are having lots of good news on the bone met thread. :-D :-D
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Liz and HLB congrats on the markers dropping for you! That's fabulous news for both of you!!! Here's hoping they stay down for a long time.
Love n hugs. Chrissy0 -
Tomorrow will be my 4th chemo treatment. I haven't lost any hair yet. I miss you girl's, hope everyone is doing good.
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Macy, you are doing well to still have your hair, maybe you won't loose it al all as it is usually gone by this time. Keeping my fingers crossed that is so.
The boards are reasonably quiet as the moment.........for myself it's because the Australian Open is on and I'm glued to the tele......lol.........love the tennis!
Good luck for number four tomorrow!
Love n hugs. Chrissy0 -
Good luck Macy!
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Yay for all the dropping markers! Celebrate, ladies!! I want to hear corks popping around here!
Alas, my TM's are fluctuating up and down a bit, but overall they are slowly graphing upward. However, my alkaline phosphotase (did I get that right?) number has done a noteworthy U-turn suddenly, which my onc said indicates that bone destruction has reversed. Huh. So she said "stay the course for now." Fine with me.
I feel pretty good so I'm ignoring the TMs. I'm just stubbornly moving forward with my big red neon I'M ALIVE sign blinking over my head. Y'know, I've got Things To Do. :-)
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Thanks ladies, so far my chemo has been really easy on me, very few side effects a lil nausea which is controlled by meds hope it stays this way. Hope everyone has a stress free, se 's free, pain free day.
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That's interesting Lulubee...about the ALP indicating bone damage being reversed. I hadn't heard that before!
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Me neither, Liz! Onc said when that number rises it can indicate that bone destruction is happening.
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That is interesting. I'm going to look up my test today!
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What's considered a notable u-turn for the alkaline phosphotase? Mine have always been on the low end of normal.
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I'm interested in this, too! Got to go check out my AP numbers!
Congrats to you, lulubee! Let the champagne corks fly!
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congrats on tumor markers, got mine done the other day and will get the results next week...dropping is always good....
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just got home from having a bone scan. As the pain in the rib area has me worried.The tech took the scan to doc to see if he wanted more pics, but. She caame back and said no. I tried to get some indication out of her and she said she couldn't tell me anything. I hate the waiting. I also went and changed my oncologist.
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I have BC that has spread to my bones. I actually had back pain for over a year, thinking it was a pinched nerve, before I found a lump in my left breast, made a Dr. appt for the lump but before I ever made it to the Dr. I woke up with what felt like my back breaking in half, screaming like I have never done before, the paramedics got me in to the hospital , to then find out I had stage 4 BC / bone cancer. My problem is pain. I have a very high tolerance, I finished chemo and radiation last August, only to find out in November I had been walking on a broken ip for nearly a month. I had been ( still am ) taking the Xgeva shot for bone strength monthly. My onc, said the drug may cause pain especially where cancer has been radiated , my left hip had been treated, I associated the hip pain with the Xgeva actually telling myself the pain was great ! The Xgeva was kicking butt! Joke was on me though, when we took the X-ray ,my hip ball was totally broken the Dr. and hospital staff could not imagine that I had been functioning with it. Long and short, I needed to have total hip replacement November 30 th! The issue I have now is all the drugs I take cause " bone pain" , now I have the bone mets pain in my spine along with the rehab pain of the hip. Everyday I think...is the pain in my spine the cancer spreading again, or is it the rehab pain, I have petscans every 3 months the next is scheduled in Feb...I hate crying wolf and feeling paranoid , I now feel like I can't trust my body or the signals it sends me. I refuse to surrender to the list of pain meds .(I can't function on them) ...anyway, I suppose the worrisome thoughts about spreading and pain are part of the deal....?
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Hi annegyg,
I am sorry to hear that you are in so much pain. I understand completely about not trusting your body's signals as to what is related to bc mets and what is other pain from other causes. You are not crying wolf or being paranoid. Once you are stage IV, that just becomes part of our reality and your mo should always be willing to explore the root cause of your pain. All your feelings are completely par for the course. Also, you don't have bone cancer. You still have only bc but with mets to the bones (small comfort?). I haven't had much pain but hopefully someone who has will be along soon with some tips on pain management. Take care.
Caryn0 -
Hi annegyg,
I just wanted to add that there are other pain management options. Other women here talk about patches, pain pumps, etc that don't hinder their ability to function. Ask your onc and maybe he/she can refer you to a pain management specialist. So sorry for your experience. I hope we can be of some support!
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Annegyg, Sorry to hear about your pain. On top of dealing with the pain it is very frustrating not knowing whether it means something good or bad is happening to your body! Unfortunately worring/thinking about the possibilty of the cancer spreading is hard to squash. I find that I enjoy the results of a good scan for about 2 weeks and then every pain makes me aware of the possibilities again.
Hope you find some relief for the pain!
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Hi Annegyg and welcome. So sorry you are in so much pain as well as trying to deal with the mental and emotional hurdles that BC puts before us. Talk to your onc and ask for a referral to a pain specialist who is the expert in pain management that is right for you so you can get pain relief without feeling loopy.
Another though is a naturopath who deals with cancer patients.........they have a lot of things in their arsenal to also help. I use both chemical and natural to keep me comfortable perhaps you could also use a combination.
Hoping your pain eases soon with help.
Love n hugs. Chrissy0 -
I question why I still have pain even though my mo says Ned . On ai still, which causes pain, also.
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exbrnxgrl, you said: Also, you don't have bone cancer. You still have only bc but with mets to the bones (small comfort?).
For some reason, I thought mets to bone was bone cancer - what's the difference?
Hello and warm (tho REALLY cold here right now) Canadian hugs to all, Patti
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The metastasis of any cancer from it's primary site is still considered the primary cancer with mets to wherever it has progressed. So, mets to bone, liver etc. is still breast cancer with mets to that area and is treated as breast cancer. The same would be true of a primary lung cancer that had metastisized to the the brain, still lung cancer with mets to the brain, still treated as lung cancer. To say one has bone cancer, would imply a new primary cancer and quite possibly different tx. When biopsies of mets are possible, and they aren't always, docs can confirm that it is indeed a met from ones primary. I had a bone biopsy which confirmed my lesion was breast cancer that had traveled outside the breast, not a new primary. Sometimes I feel like I have gone to med school:)
Caryn0 -
Thanks Caryn, i've benefitted from your 'med school', lol. Yes, my breast cancer had traveled to my iliac crest where a lesion was and determined to be a met, not a new cancer. Now I remember ... :-) Hugs!
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just wanted to pop in and say I am interested in this thread on pain. I had lower back pain all last week and by Friday I could barely shuffle my feet to walk. My onc ordered me in for a stat lumbar spine xray and there was something on my L4 non specific. She moved bone scan up to next week now instead of Feb. I have had no injury to my spine there, other than 2 epidurals for csections, I can't think of any injuries. I've been on Faslodex for 3 months. It appears its not working, will know for sure this week. I hat the waiting to know. I've been in bed all week with heat packs and muscle relaxants. My sweetheart has been so good in taking care of me.
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RangerMom, Sorry that you are in pain. Also hoping that it is NOT progression. Glad you have someone to spoil you!
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Hope you feel better soon rangermom !!!
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