Bone Mets Thread
Comments
-
Thanks HLB. Back at you!!!
0 -
Thanks for the info.
0 -
Ladies, lassies and gals,
I'd like if I may to extend a hearty apology to you all for posting comments that were offensive and idiotic the other night.
For me to have even commented on this stage 1V forum has been bad behaviour and I'm truly ashamed to have come into such a special place and then to have insulted you. That is not the Lynda I'd wish for you to see at the best of times; I was eaten up with sorrow at the recent loss of a sister, made worse from the fumes of a nearby half-empty bottle of sherry. It's an excuse, but true just the same.
Since my sister's diagnosis of stage 1V bc last September, I have followed these boards and gained exceptional advice and information, while also greatly enjoying reading about individual women's lives. This place has been a lifeline for me many a time, and in the darkest moments when there was no hope, I still found it here among you all.
I very much regret announcing my presence in the abysmal manner I did, and hope you believe that I root for you all every day in whichever way I can. Hell, my own family's going mental at me every time I launch into abuse about Pink October, that much have I changed sides about the nature of bc research.
Naturally, I'll be happy to revert to simply observing the boards without a word in future. I very much doubt that I've anything to offer that could bring purposeful encouragement or information to the forum; if I had such a thing I may have felt okay to post, but I didn't and I won't. Above all else, I acknowledge that I do not have stage 1V cancer and there's an end to it.
I hope that my wee apology can go some way to putting things right. I posted originally last night under the "Cure" thread, seeing an opening for my explanation in light of ongoing debate about caregivers' posting on stage 1V.
Thanks for letting me talk just for a minute. It's for my wee sister Mari. All the best and love to you all.
0 -
Thank you Lynda, and very sorry about Mari :-(
0 -
Lynda, what a gracious apology. I'm sure lots of people have posted online after having one glass too many and later regretted it, but few have the courage to confess and try to make amends. Bless you for that.
May you be comforted in your loss.
0 -
Lulubee, how kind. Thank you. And to you, HLB. Appreciate it. Warm wishes are always nice this time of year.
0 -
Lyndadoll I'm so glad that you came back. Often words are said when we are at our lowest ebb and in the daylight are regretted but it takes a brave person to admit a mistake. I'm so sorry for the loss of your sister and hope that you can work past the hurt of her loss and begin to remember the good times with her.
Love n hugs. Chrissy0 -
Chrissyb, thank you so much for your thoughtful words. Love n hugs back too.
0 -
Good morning, all. I haven't posted in a while. I just got word today that the cancer is back- showing in some bones. I didn't ask which. I was on tamoxifen from march to last week. Now i take anastrozole. My onc says that usually works for a shorter time than the 1st. Then, there's one more pill he can try. Then, it's back to chemo. It does my heart good to see posts from people who have been surviving for years at this stage. I pray for us all.
0 -
Hi Clarrissa so sorry to hear that you have progression.......it's always hard to hear. I was on Arimidex (Anastrozole) for fifteen months before I had some new spots show up then I was changed to Femara (Letrozole). I've been on that for two years now and am as of right now, still stable. Hopefully you will get a long time on the Anastrozole. Good luck!
Love n hugs. Chrissy0 -
Anyone else have the experience that their bone mets hurt much more at night? I make do on Vicodin during the day, but at night they wake me up and the Vicodin barely takes the edge off.
Just curious if anyone knows why that would be? I always thought it was b/c we have stuff to distract us from the pain while we're running around during the day, but once we lay down to sleep there's nothing to distract us from the pain. But my DH had another theory...he heard that the body heals itself at night, and wondered if the bones were on overdrive trying to heal from the mets during that time.0 -
Oh, and Clarissa, so sorry to hear of your progression
. My bone and liver mets cropped up while I was on Tamoxifen, so I know how u feel...so scary!! My onc put me right back on chemo before trying any of the AIs, and so far this regimen (Doxil) hasn't been too bad, and my onc seems fairly confident that it will kick butt on my mets. So I know the idea of chemo is fearful, but on the flip side they can kick some major cancer butt!
Also, I've read on these boards somewhere that there are some drugs they can give to make us start responding to the anti-hormonals again...don't know any of the specifics, but I'm sure some of the wonderful ladies on here could give you some particulars, so there's another potential option. Hang in there!!! Sending cyber hugs!!0 -
Thank yoi for that response, ChrissyB.
0 -
Thank you, Marymoir.
0 -
Hi all, I'm back on the boards again. Yipee! I couldn't get logged in for a while. I want to say to Lyndadoll that when you first posted, I knew it was the anger and sadness of losing your sister and never for a minute did it offend me. I have lost a sister too to cancer and I saw the signs. Each one of is different, even though we have all the same stage. We can't compare ourselves to each other, that would be a path not to follow. We all have our time to enjoy and fight and pray and be afraid and this is the place for us to be honest. My SO (significant other) has apologized. My daughter has apologized. I'm hoping to get them in the same room again some day. I need them both in my life and I'm going to a counseling session to see what I can do to help them.
I saw a questions about bone mets pain at night. It hadn't bothered me till last night, I had my first day of radiation from t10 to t6 and my back was on fire and in so much pain last night. I got a script for vicodan and I hope that helps tonight (day2). I have a question for those out there with lung mets, did it start out symptoms of pneumonia first? Because that's what I have, just finished antibiotics and they will be doing a CT scan in another week to check. I think its too coincidental to be just dx with mets and now I've got pneumonia too. Please let me know what if any symptons you had of lung mets? Also let me know about liver mets. I have one scan that suggests my liver cysts might be mets too? Thanks
0 -
Ranger Mom,
thank you so much for your gentleness and empathy. I'm sorry you too have lost a sister and I hope to goodness any fears about further mets are unfounded.
Take care.
0 -
Clarissa, I got 18 months out of arimidex and may have gotten more but I changed due to joint pain. Hope it works a good long time for you without the joint pains.
Lyndadoll, I also thought i recognized your pain in your post. It takes a big person to admit a wrong and i dont think anyone of us can say that we havent hit that wall of anger. Thank you for coming back and setting the record straight. I am so sorry for your loss and may your sister live on through your comforting memories of her.
My very best to us all
Pat0 -
Pat,
I've been saying thank you all day it seems, but genuinely, thanks for your lovely comforting words.
Take care.
0 -
Thank you, Frapp.
0 -
Hi all,
I haven't been back to this thread for a bit. Thanksgiving was the 1yr anniversary of being first being dx last year. The only treatment I have been on is arimidex which seems to be an exception seeing all the treatments that others have posted. My onc did mention that after being on it awhile that she may want me to take one of the bisphosphonates. I didn't like the idea at all so had my primary do a baseline bone scan for future reference. My bone density was fine. My second PetScan showed improvement in many of the spinal mets and my onc hasn't mentioned anything further about the bisphosponates. She has been very happy with my progress on only the arimidex. I say "only the arimidex" but I also follow the Budwig diet (no meat, no fats, no sugar, no white flour--no Thanksgiving Dinner:) which I do feel is a big contributor to my progress. I have a little joint stiffness but nothing I can't deal with and sometimes I get hot flashes but all things considered I just deal with it and consider myself lucky.
Sonny and Chrissyb I see that you both posted that sometimes you get pain at the site of your bone mets which was something that I recently was wondering about. My primary tumor went to my rib and then broke through the skin which is actually how I came to get dx a year ago. At that time I did have some rib pain but after starting the diet and then arimidex it went away comepletely. Just this past week I have noticed an occasional sensation in that area that I wouldn't really call pain but caused me to wonder. My last PetScan a month ago had showed the primary tumor had shrunk considerably so maybe it is the healing process of the rib.
I must say that after being on this journey for 1year that I feel soooooo much better about it than I did starting out. Thanks to all of you who post on this board and share your thoughts and experiences. It is nice to have "sisters" who are always there to listen.
0 -
So many twists and turns. I had a flare in the lytic lesions in L4 and S1 (thank you Tamoxifu*k). So the lesions got bigger over October and November, the pain was intense, and even though they are receeding the pain is there. Feels like an empty hole in my lower back. Oof.
Folks, how do you do it? I mean, I barely have the energy to move and am going down to part time because I can't last an entire day (which I hope will be temporary). I'll speak with my new oncologist about radiation to the site to help with pain (my oncologist is leaving and I will meet my new physician later this month). I had hoped that the Xgeva would help with the pain. Not so much. Sick of taking narcotics and having the energy of an underachieving slug (as opposed to the overachieving slug).
It just feels like so many people are leading productive, active lives with bone mets and I've been stopped in my tracks.
Scorch0 -
Can anyone tell me what a Cancer Antigen 27-29 is? My onc had me tested after she informed me that they found possible met to my right hip and clivus bone. They throw so many things at me during my appointments that I can't fully understand any of it. And the Internet is not helping me to much, only makes me more confused. I am having scans, mri's and biopey of the hip next week.
0 -
Scorchy, I am sorry that you are having such a tough time. Everyone's bone mets effective us differently and you seem to be going through a bad spot. I hope radiation will help and you will soon be an overacheiving slug again!
0 -
Macyhen the Cancer Antigen 27-29 (CA27-29) is a marker released into the blood that can be counted and used to track cancer activity. Not everyone can use this test as an indicator of activity so not all docs do them as they can be very inaccurate. I would be thinking your doc wants to see if he has a base line to work with. Really it's no biggy.
NMBBFL I have a rod in my arm to stabilize it as it was on the brink of shattering when the mets were found so not much bone was present. I know the pain I get is from healing bone.
Scorch I think most of us struggle with fatigue but just try to push through. A lot of it comes from the meds unfortunately. My doc has started giving me injected Vit K every three to four weeks and that sure does help but you need to be aware that Vit K is the clotting vitamin so taking aspirin, fish oil, Vit D and other blood thinners is a must.
Love n hugs. Chrissy0 -
Chrissy and Sonny,
Thanks. Hoping this rough patch will be over soon enough. I'd like to be an overachieving slug again.
I learn so much from all the women on the board. I read often and appreciate all of you.
Scorch
0 -
It is do hard dealing with this stuff. I am a newby. My ca27.29 was on direct hit as it doubled and spine met discovered. Already completed 25 rads to spine and now on femara and zometa. It sucks. Just do the treatment and hope for the best.
0 -
I could not function on the pain medicine, so I ended up with an intercathel morphine pump. The morphine pump sits between the skin/fat layer and the muscle in my abdomen. There is a catheter that feeds the morphine into my spine like an epidural. I am able to function like a normal person with no side effect from the pain medicine.
There are a lot of people on this board that have started taking Ritilan to give them much more energy.0 -
Dx of bone and lymph node mets aug 2012. Initial tx was letrozole and pamidronate . Due to vein issues, I've only had two pamidronate infusions to date. Finally got a port installed, so back to pamIdronate in Dec. Recent CT and bone scans show some healing of spine and rib mets but the tumor spreading into my latissimus dorsi hasn't shrunk though stable. As this tumor causes me a lot of pain, onc switched me to capecitabine (chemo pills) in hope it will start to shrink.
In pain since May and frigging tired of it. Now have a fentanyl patch, 125 mcg. I don't have anything for breakthrough pain as hydromorphone0 -
Dx of bone and lymph node mets aug 2012. Initial tx was letrozole and pamidronate . Due to vein issues, I've only had two pamidronate infusions to date. Finally got a port installed, so back to pamIdronate in Dec. Recent CT and bone scans show some healing of spine and rib mets but the tumor spreading into my latissimus dorsi hasn't shrunk though stable. As this tumor causes me a lot of pain, onc switched me to capecitabine (chemo pills) in hope it will start to shrink.
In pain since May and frigging tired of it. Now have a fentanyl patch, 125 mcg. I don't have anything for breakthrough pain as hydromorphone and morphine made me really ill. Tried acupuncture (3 sessions) which helped a bit but I've lost motivation to go. I already dislike all the standard appts cancer brings. I have a book called Meditation As Medecine and hope I can discipline myself to try some of the techniques. Relaxation tape helps but I only use sporadically. Spent last week as a hermit, no exercise at all. Tonight I was in such an angry mood, I finally went dog walking. I know I need to exercise and be in nature. I need to eat more veggies and figure out what to eat. Oh yeah, I also have dx of GERD with all this. Is there a correlation between BC and GERD?
I still am amazed at stage IV people able to be active and enjoy life. It seems like they're not all that sick, while I feel disabled (no use of left arm due to tumour in underarm but worse is the pain) Enough of my story. Oh yeah, I've just added lamotrigine in hope it will adjust my low mood.0 -
I am amazed how well may stage lV people function also. I still work. I do visual merchandising, changing mannequins, setting up Christmas displays etc and very fortunate I have been able to do so. I have so far been able to work thru the pain that is in my mid back and right hip along with some swelling in my hip. I try to be positive and I know how hard it is to shake off the dark moods.
Pets are wonderful therapy, walk the dog, pet the cat...enjoy the out doors. I acknowledge that I hurt, but try to put the pain in a box in the back of my "deal with it list". It is not easy to do, that I understand. Try to find the best way for YOU to deal with, handle, or cope with the pain, that becomes your personal therapy.
Take care and hugs,
Tish
0
