Bone Mets Thread
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Good morning Patty great to see you back with us we all missed you. Big hug I hope you are doing well and enjoying your summer. ☺️
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Hey Patty so happy to see you!
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Hi Patty, we are glad you are back! Everyone had been very worried.
Hugs and prayers
Claudia
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Good to see you, Patty. I hadn't realized you'd had another bad time. Was it the same sort of thing you've had in the past? Sure glad to know it's behind you!
Danae, for the kidney pain -- be sure you're drinking lots of water. Chemo does its work in just a few hours, then needs to get washed out of our systems.
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Attending a MidSummers Night Dream at Shakespeare in the Park. So much fun!
Babs
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Patty, welcome back!
Diane
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gentle hugs, patty.
Z
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Babs - That looks like a lot of fun!
Hugs and prayers everyone
Claudia
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is everyone abandoning the bone mets thread?
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Bigbhome, I think people are still reading the posts on this bone mets thread!
I see that you are taking Ibrance and Letrozole. How are you doing on this combo? Do you have any bone pain due to mets? Was the radiation for pain relief? I have been on Ibrance/Faslodex for a few months and tumor markers are coming down. Now, I am waiting for the bone pain to reduce!
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I'm here bigbhome, just bouncing around a bit. Nothing to report for now but I am starting rads tomorrow to my left breast and nodes but not my bone met location at this time and I get my first xgeva shot on Monday. Ugh, I hate, hate needles.
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Long time not posting always lurking. I learn a lot just reading and I feel I don't have much to contribute. I don't see a lot of people on the sam Rx Ian I'm getting Abraxane IVchemo after successive fails with Xeloda Ibrance and Faslodez☹️ I'm in my seventh month taking Abraxane which is 14 infusions since I get one every two weeks. Until lately everything was doing well. My TMs were dropping and the se's were minor. But since last infusion I'm feeling more nauseous and weak. When I see my onc next week I'll ask for a scan to confirm TMs is correct. I'm also anemic so a lot of fatigue. If you all have Anya ideas I welcome suggestions on how to control se's and how to gain strength. I take zofran for the nausea but like I said this last week hasn't been enough with the zofran.
Appreciate your thoughts and prayers if so inclined.
Aurora
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sk35 - The rads to my right hip and my neck were for pain. The rads to my face were because it was effecting my ability to open my mouth. It really works well! I got 3 years from Faslodax alone. I'm hoping your combo gets you even more! The pain may take a little longer. I found 15mg meloxicam really helped.
Illimae - Boo to the radiation and shot...sure hope they work though. A piece of advice on cheval shot...get it in the stomach, less painful. Just turn away and don't watch. If I watch I break out in a cold sweat and almost pass out. I can watch others, but not self!
Hugs and prayers
Claudia
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Hi All, just learned today I have lesions in the brain. This came as quite a shock. I had been so successful with treatment of my bone mets with no progression in six months. Started noticing left arm and leg weakness with loss of balance. Went to MO who ordered MRI of the brain. Results see several very small lesions on my brain. All of labs were good with TM being 15.1. I am in total shock. Does this mean imminent death. So scared. I have fought so hard to stay above water. Now I am drowning
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Hi All, just learned today I have lesions in the brain. This came as quite a shock. I had been so successful with treatment of my bone mets with no progression in six months. Started noticing left arm and leg weakness with loss of balance. Went to MO who ordered MRI of the brain. Results see several very small lesions on my brain. All of labs were good with TM being 15.1. I am in total shock. Does this mean imminent death. So scared. I have fought so hard to stay above water. Now I am drowning
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wleeky1952, I'm so sorry to hear your news. I don't have experience with brain mets, but I'm sure someone who has will be along soon to give advice. Very small lesions must be a positive, I would think, and I do know many have had good success with treatment, so hang in there. In the meantime, I'm sending you huge cyber (((Hugs))). Barbara
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Aurora: do you have blood test before each Abraxane infusion? Please check your hemoglobin, B-12, and iron results. I am on Halaven and at one point I was very weak and SOB. It turned out my hemoglobin was in 8 range(will get blood infusion only if it drops to 7 range), B-12 and iron were all too low. So, with insurance approval, I got a B-12 shot, 2 bags of iron infusion over a 3-week period of time. It helped my energy level now. You may check your blood results and ask your Onc with supplement.
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Patty, glad to see your post and that your back! Cheers to feeling better for an extended period of time.
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wleeky1952 - There is a brain mets thread that you should check out, but I know at least one person doing really well. It's just a new PITA and you've already tackled several. Sorry you have to deal with this, but it's really just one more thing ...
>Z<
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Wleeky1952, sorry about the brain mets. With so many targeted therapy available, hopefully something will work to zap these mets. Hugs,
Sandy.
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wleeky1952, I too have friends with brain mets going on 5 years and more. Lots of options to discuss with your team from Gamma Knife to the version of Ibrance that can cross the BBB. When do you meet with your team?
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Wleeky1952 I don't have brain mets but I know this for sure It's Not an Imminent death! That I guarantee! There are many tx available so you have time.
Cling thanks for responding, definitely low iron Hgb 9.1 but my cancer center hasn't deemed it low enough for blood transfusion or iron infusion. A few months ago the hgb was 8.0 and they did infuse iron but I have problems with copay I have Medicare and no money to pay the 20% Medicare won't pay. I see my onc next week Friday and if I'm still feeling low I'll ask for something .
I read and follow along the tread and appreciate all the support. Thanks.
Aurora
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Thanks to all for the support it means a lot. Been going thru this since 2012 and been a fighter right from the start, can't keep an old hillbilly down(eastern ky). This totally knocked the wind out of my sails. I have my first cyber knife in the morning at 8:30 am. I have a great team I trust entirely. I am meeting with them this Wednesday. They are right on top of things.
Wand
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Auroya, I'm right there with you. Had my runs with Femara, Afinitor + Aromasin, Faslodex, Xeloda, Ibrance + Aromasin-- and now I'm on weekly Taxol which is a first cousin to your Abraxane. It's been a bumpy ride but right now things are pretty quiet. Well... I mean... okay, I'm tired and bald and my feet and hands are steadily going numb on me, but quiet other than that. LOL.
I've been quiet for a couple of months because I've had the most insane year ever so far and right now I'm trying to catch up in every possible arena of life. About to go on vacation and send my son off to college, though, and after that I'm hoping the rest of the year will be coasting in the breeze with my feet off the pedals.
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auroaya I'm on Taxol and after my first three infusions my hemoglobin was low went yesterday and all my blood values were perfect. I drink a lot of chaga tea that helps and eat a lot of plant based iron (hate liver) spinach etc. I throw it in a smoothie every morning. Feeling very strong most days . I'm taking my daughter with me on my dragon boat tonight so looking forward to her checking it out. Wishing you all the very best
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Wendy I hope you have a great time with your daughter. I live with my daughter and she cooks and prepares my meals which most of time are vegetarian except a day or two. She makes me smoothies with kale or spinach and strawberries and blueberries at night but sometimes she's so tired from work she can't do it. On those nights I drink a glass of nuts milk and eat two slices of wheat bread with strawberry jam. I feel slightly better today than I did the past few days since the infusion on Friday, hopefully I'm on the rebound.
Aurora
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Raewyn i look at these pictures over and over, just gr8.
Wendy how do you prepare Chaga tea? Can we buy it anywhere? Specialty stores? I would love to give it to Dani.
Patty so nice to see you? When are the kids starting school? How is it going now?NO it never gets easier to let them go, we just do.
The last Pet/CT it has 4 pages of info, aside from all the new stuff what stunned me most was a new lesion less than 1 cm in the "other breast" , Onco did not wanna talk about any progression, did not mention any of the new ones, including this one. I think e/o wants this trial do be able to do something, and better to close our eyes. We all did. I saw it and saw the others, she was told no need for mamos for awhile already...i just don't want it to just grow and grow...Three weeks to next scan. CT. But CT did not pick up ANY of the things that PET picked up. They would allow PET but only a week later. And the LDH is going up and up 468 now! Of course the HGB is low (9.7) and other stuff, but they wanna ride it out... I tell you I cannot function too well these days. Kinda paralyzed. Yeah you see me at the market, no one can tell, but my mind is just not the same. I got so much work to do, to figure out all that can be done with the new info from F1. But SE's are very manageable - that is if something is working.
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Hi Lulubee!!! I've been thinking about you. Busy summer here too. Also hoping for a quiet fall....
Thanks for the note. Have a great vacation!
>Z<
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wow. Just checking in on y'all and seen all the support. I've said thanks so many times but it doesn't seem to be enough to express my sincere thanks. Seriously would have already given up without talks support.
My dss are fine. I am getting over sepsis again. Ugh. Hate the icu unit. So scary.
Gotta find something to take notes so I can reply in talks situations. Just know you are all in my prayers
Hugs
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