Bone Mets Thread
Comments
-
freebird they measure CA 27.29 for me. I think mine was around 50, on the rise.
0 -
I am definitely holding out hope for a tx change
0 -
dune - how's your mom handling the progression. ?
0 -
Carla - the tumour markers are the CA 15-3 for the breast and CEA which is more general. Hope this helps.Patty - hope you feel better soon and get back to the sweet comfort of your home.
Dune - hope you have a good night's rest and that you get good results from MRI.
Linda
0 -
Carla, I get CA 15-3 and CEA both done, though I only know my 15-3 number, the onco doesn't tell me the CEA one, only whether it's good or not. My 15-3 number has gone from 61 down to 11.8. But I wouldn't read too much into those numbers, lots of Dr's don't like using them. They only tell part of the story.
Patty, I hope you're out of there soon. I hope they have you on IV to get your fluid levels back up & that they figure out what's causing this.
Hugs to everyone!! Cheers, Dee
0 -
Carla, the CA27-29 has been very accurate for my tumor markers. Initial (pre-mets dx) they ran in the 10 to 12 range. When I got sick just before I was dx'd w/mets, we discovered they were at 155 -- clearly an indication I had mets going on. Since I've been on Arimidex, they've dropped back into the 75 range. Normal is considered up to 36 or there abouts depending on which lab does the test.
Patty, what is causing your vomiting and other issues this time? Is it whatever drug(s) you're on? Hadn't you had the flu the last time that happened? Oh dear, I feel so bad for you, but hope they get you rehydrated and bounce back quickly! Big (((Hugs))) to you and Carla and Dune especially, and everyone else tonight!
0 -
Hi everybody and welcome to our newcomers... once again I am days behind on this thread.
Kiwi - I LOVE the theme song idea. My husband and I saw Tom Petty at Red Rocks here in Denver last summer and those songs have always been two of my favorites. So perfect, somewhat unfortunately, in the case of Stage IV cancer life. I have a PET scan next Thursday... my first in a while.... and I am already totally anxious.... just want it here and over with... it's that waiting....
Caitedidrun...not sure if you will see this but if you do, I was also very active prior to being diagnosed (didn't lift heavy weights but did run marathons) and I also had lesions throughout my upper and lower spine, ribs, hips - you name it. I had three weeks of radiation and then four months of chemo and at that point, could barely make it to the mailbox. As others have noted, it can take years for the lesions to "heal"... my onc explained that they dissolve away and then new growth fills in but that you can always see where the lesions were. My oncologist never cautioned me against running... she actually encourages it... and skiing, etc. I have finally started running again (TWO years later) and I am up to about the four mile mark. I just don't have the energy that I used to.... I am never in pain while running, although the next day I feel as though I ran a marathon... .so stiff and sore. Nothing that Advil or Aleve can't take care of, though. Definitely check with your oncologist about types of exercise she might recommend for your at this stage, but have hope that someday you might be back to your old self and maybe even pain free.
Dune - thinking of you and hoping that the MRI goes well.
XOXO
Andi
0 -
Hi all. Last day in Auckland. Drive home tomorrow.
Dune - bugger. So sorry you got crap news. Hope the MRI goes well and is clear. Don't know about the AI you're on but Femara I get dizzy spells. Started after several months of taking it so hoping yours is a side effect.
Patty - sorry you're in the hospital. Hope you get well soon.
On the previous page someone asked about mets pain. I still have it off and on. I baby my back due to spinal mets and chewed up vertebrae. My rib met is the worst. Not all the time but small dull ache most of the time.
Hugs and hello to everyone!
Terre
0 -
Hello to all,
PattyPepper I sure hope you're feeling better today. Is it the flu again? I'm battling a cold right now, there's so much going around. You're in our prayers and hoping to hear that you're out of the hospital soon.
Dune, how are you feeling today? Can't stop thinking about you and praying you get some relief soon.
Carla, I hope you're ok. I know something has you worried regarding tumor markers. Please let us know how you're doing.
Terre, sounds like you're having a nice time away. I'm sure you needed it and nice of you to check in.
Hugs to all, Annie
0 -
good morning all. So they say I have another uti but this time with c diff ( infection in the colon I believe ). Anyway feeling a little better but no ehere near begging to go home. Still lots of big D and nausea and if course lying in bed all day and night and vomiting does nothing to help this back pain. Anyway I'll make it thru to another day.
Hugs to all
0 -
patty,
C-diff is tough nut but hang in there and I know it will be under control soon.
0 -
Hello everyone. I haven't posted in a while, but I read every day. Dune, I am so sorry to hear about your recent problems. It must feel very scary, but you are a strong woman, and we are all here to help you through it.
Patty-- I hope you are well enough to go home soon. But when you feel really lousy, sometimes it feels better to be in the hospital instead of trying to cope at home. Still a bummer, though.
I came down with a mild cold this week which turned out to be a good thing. In fall I had 2 nasty colds, then bronchitis, then the flu over the holidays. All of this was crazy for me as my colds have been very mild for years and I get maybe one or two in the winter. And I've never had the flu, so my immune system was obviously struggling. Then I got the bone mets dx and it made sense. So this new cold was like the ones I've been getting for years with mild symptoms and a day or two of great fatigue, then it's pretty much done. I'm taking that as a sign that my immune system is doing better. I don't know if that's true, but that's my story and I'm sticking to it!
To everyone I didn't address individually, I hope you are having a good day today and that you feel good for the weekend. And thank you to those sharing info about treatments and drugs,etc. I am learning so much from you. It makes me ask good questions when I see my MO and I get helpful feedback that I find reassuring. Knowledge really is power even if it's a bit frightening at times. Thank you all!
If you're in the cold (it's bitter here today) or heavy snow, stay warm and safe!
Sharon
0 -
hello everyone, just curious as to how everone handles their spine pain issues. My spine and sacrum both have mets and to the point where I think I need to bump up my pain meds. Still working full time but the darn back ache makes it tough to work then come home and act like a civilized human being.
0 -
Well a very very frightened morning for myself...early calls from nurses and doctors...My tumor markers have gone up...even on the most strongest chemo out there (Red Demon) they call it in the chemotherapy world...Well this chemo is not working as planned..so cancer is progressing rapidly...now have to have another PET scan to see what the hell is going on...with the cancer...then will probably will be put on 2 different types of chemo plus blood transfusions...because my blood counts are always low...so getting clean fresh blood will help...who knows...I trust my doctors...but oh boy...I really have to stay strong and pray for a miracle....Love you all...I need you all more then ever!! *****TEARS*****
—
feeling exhausted. 0 -
So sorry to hear your news freebird. The TMs going up may just be a way of your body fighting the cancer cells. How long have you been on the chemo/faslodex combo? Some doctors are not really into TMs and some are very much so. Dont assume your cancer is progressing rapidly, just take one step at a time. I will help you pray for a miracle, I know you need strength and love the most right now, and I will do all I can. Myra
0 -
Carla, as much as you love your medical team, it probably wouldn't hurt to get a second opinion at this point -- just to be sure everything about your dx and situation has been considered. Clearly I am admittedly prejudice about the experience major NCI-designated cancer centers that see the most cases of bc have. But loving your docs (as I did my first BS) is no reason not to get a second opinion (as I did, and learned she had missed some pretty key things -- like 3 additional lesions). NOT saying I suspect anything like that is going on in your case. But there are just too many crazy possibilities, like ER or Her2 changing as bc progresses, that not only can be missed, but which a fresh set of eyes on your case might uncover, as well as the whole option of the newest trials, etc.
Forgive me if I'm being overly outspoken here when you're already upset. I realize that I have a very strong point of view about second opinions based on my own experience with a highly respected surgeon and other local docs vs. what was later found when I finally had a second opinion team look at my case, as well as the experiences of others close to me. But I just want to be sure you are getting the absolute best of care, and I can't help but worry about you based on what you've told us. Hopefully, Myra is right and this is just a brief spike in your TMs, or TM counts aren't especially valid for you, as they aren't for some. But I still would feel better if I knew your case and treatment course had been thoroughly evaluated and was agreed upon by more than one onc, including those at a different medical center.
Patty, glad the problem has been dx'd and that you're getting the care you need. Hoping some very strong antibiotics will turn the situation around quickly!
Hi, Sharon! Glad to see you back. And I think there was a new face a page or two back. Sorry to miss you by name, but glad you're here.
Donutswife, as you may have already figured out, not all pain meds work the same for everyone. I was on a couple that gave me only moderate relief, and I was under the impression that stronger ones (at least the ones I'd tried) upset my tummy and/or made me spacey and/or agitated. But when I ended up in the hospital with a fractured hip, a hospitalist put me on something fairly strong that worked so much better than what I'd been on. So my suggestion is that you talk to your onc or a pallative care (pain) doc or someone that can help you figure out something better than whatever you're on now. There are also pain patches that can help -- both narco and non-narco. And we all know what you mean about acting civilized! It's pretty hard to do when you're in pain! Deanna
0 -
Carla, Deanna makes some fabulous points! That's what these boards are about.
0 -
Carla, I just thought of something that might help you. I was reading Deanna's comments and she is correct about the TM's. I just wanted to add this, when I first started with my onc. I remember him telling me that the TM's sometimes increase because the tx is working and it causes more cancer to be circulating in your blood. All I'm saying is wait for the results of your scan, maybe your current tx is in fact working. Best wishes. (Maybe others can confirm my onc's comments).
0 -
Carla,
I am also suggesting that you wait until your scan and try not to project about what might be (ok, silly suggestion as that might be quite impossible). My mo doesn't even do tumor markers, though I do get scans every 6 months. Hang around here for some hand holding and comfort
0 -
Carla - If I may just add one comment to the good suggestions above, is do you have someone to accompany you to your appts? Although my list of questions is always ready when I go see my Onc and I take notes, I like having another pair of ears with me. Just a thought. A second opinion is a good idea. I went for a second opinion shortly after my dx (had other tests and biopsies) and it confirmed that the treatment plan that I was given was the right one. A girlfriend of mine really insisted that I go for that second opinion and I was reluctant to go because it was about 2 hours commuting, but in retrospect, I'm glad I did and I felt reassured and continued with my initial Onc. And I was glad to have someone with me because I did not know much about MBC and my head was spinning. When is your next Pet scan?Keeping you in my thoughts and prayers - Linda
0 -
Oh geeze Carla. Sorry to hear you're having a crap time. I'd agree with the others - second opinion and wait for the pet scan (that's damn hard to do!).
To the others - Dee said everything I was thinking but said it better.
Dune - let us know how you are.
Sharon - welcome back!
I'm home from Auckland. Good trip and good strategy sessions with the team but really good to be home.
Hugs to all,
Terre
0 -
Terre, welcome back and glad to hear you had a good trip!
Dunesleeper and Carla, please let us know how you're doing, thinking of you both and sending healing hugs.
PattyPepper, c diff is not fun, I know several people who have had that but I know you will be fine once they treat it. Wishing you a speedy recovery.
Hugs to all, Annie
0 -
So much to keep up with here! Carla and Patty, I really hope your docs get a handle on things soon. Feel better! Donutswife, I have extensive spine Mets and pain is definitely an issue. I've had rads to a couple of areas, which helped. I also take a combo of pain meds. Norco around the clock, Celebrex twice a day for the inflammation, and Diludid for breakthrough pain. Getting on a regimen is important. You have to stay in front of the pain. Chasing it never works and just makes for a very grouchy girl! Also, resting periodically. I have to lay down several times a day to get the pressure off my spine.
I'm heading out this morning for a girls trip. Just a short cruise to Mexico with 3 lifelong friends to celebrate making it to 50! I start Ibrance when I get back next week. Hopeful that it's the magic I need and not Unicorn Poop
0 -
Carla -- I agree with Linda. It's really helpful to have someone go with you to the "big" appointments. Our emotions can really mess with how we take in information, so when you're having all this going on, it would be helpful and comforting to have someone with you. You are in my prayers that things are better than you think they are right now.
Romansma -- I am thrilled to hear you start Ibrance next week! You're the first one I know of, and I am so happy for you. No unicorn poop! Hopefully this is the real deal for you. Have a great cruise. The wind chill here is -17 degrees today, and I wish I was headed for Mexico!
Hugs to all. Happy weekend!
Sharon
0 -
Ok, let me see. I don't know who I've told what. No brain tumor! No signs of stroke. So no explanation for novacaine lip. That's fine for now. Pain level is down. Much more tolerable. No evidence of fracture but a lot of cancer grew very fast in my hip. I start radiation next week. Thank you all for being here and your concern.
0 -
Dune! wonderful news. Cute bird btw! I used to have a cherry-headed conure. Birds are a very unique pet.0 -
Wonderful news Dunesleeper! No brain mets! Yay!
0 -
Sigh of relief Dune. Hope the rads will be as good for you as they were for me.Linda
0 -
Screech, your cherry-headed conure must have been gorgeous. I've had parakeets, cockatiels, and a mean love bird. He must have been abused. Anyway I couldn't keep him because he kept setting off the alarm. Now Dusty is my baby. He's almost a year old, and I've had him since he was 6 weeks old. I need to make arrangements for him, but I honestly don't know anyone who will take good care of him. The vet says you need to leave the pet in your will, along with a stipend for their care. Well, I'm just going to have to stick around a while.
0 -
I had a very rough nite last nite excepting the news I got yesterday...where I made some choices...that I am not to proud of...This disease plays with your mind..if you let it...I am going to choose not to let it drain my life from me...I will try from this day forward...take charge of this disease and not make it take control of my life or my destiny...I'm sorry for posting my sadness on FB...but sometimes this is all I have to express...my deepest darkest feelings...So if I offend anyone I'm very sorry...but I love you all...and this disease as haunted me for 5 yrs...and I only want to live with joy and happiness...and be here for my grandson's Rylin Jay and Brody James...I thank you all for ALL your support...Peace Out !!
0
