Bone Mets Thread
Comments
-
Wow Babs you are one beautiful lady🤓 What a great celebration you all look so happy he is one lucky father. Making memories for all is a wonderful thing. Thanks for sharing made my day😊.
I'm still waiting on the last scan results, since we had a holiday on Friday I can wait till next week. It's so crazy where our minds go during these times. The possibilities are so daunting and scary and since I still have my tumor I'm grabbing it all the time to see if it's bigger smaller or what! Is it in my liver , lungs or brain arghhhhh! I feel really good so I will concentrate on that.
Patty how are you doing I hope your comfort levels are way up.🤗
Cat great news stable is wonderful
Wendy
0 -
I am confused... stable and Ned...Ned means the tumors are gone? The terminology sometimes is confusing...
0 -
Gracie, NED stands for No Evidence Of Disease -- so yes, if you had, for example, a liver lesion or a lung lesion, it no longer appears on a scan.
NEAD stands for No Evidence of Active Disease, a term more commonly used with bone mets when the mbc cells cease being active, so show little or no update on a Bone Scan. But because there's been damage to the bone(s), which doesn't heal the way soft tissue does, the damage (evidence) is still visible.
STABLE means just that -- no change from previous scan(s). Whatever regimen we're on is preventing the mbc cells from proliferating -- a very good thing! -- but hasn't knocked them back enough to look any different than our most recent scan(s).
Sometimes how much disease we have can be a factor. A stable report for diffuse & extensive bone mets, which many us have, is very positive.
0 -
Deanna,
Thank you for that clarification of NEAD! I actually thought that was an autocorrect for NED. Ha!
I know as a bone mets person I'll never be NED. Almost stable is about as muchas I expect for now. But, who knows what's around the corner! Could be good treatments!
0 -
Deanna thanks for the explanation. That helps a lot! Kaption, I hope and pray that all of us reach Ned.... even if it's just for a little bit
0 -
hi all!
Just popping in to say hi to all of you here. Last scans & tm's are still stable. Still on 100mg of Ibrance with Femera, starting on cycle 5. My counts aren't very high 1.1, but onc feels that I am tolerating it well enough to not bother with mid cycle labs, so we shall see how that goes, scans again right before Christmas with no appt for results until after New Years (ya really nice, enjoy the holidays, sitting on pins & needles!! aarrrggghhh!)
Love seeing all the pics & good news being posted. take care all & I'll pop in again soon, cheers, dee
0 -
Hi Dee.
Congratulations on stable scans
Wendy - hoping for great scans. Let us know.
>Z<
0 -
Dee you "sound" better, are you feeling better? Let's hope for good results..
Deanna thanks for the info.
0 -
MomATT, I am feeling a bit better, though I'm still having a hard time coming to BCO & seeing Hope's name at the top of the Ibrance thread. So I'm taking longer breaks from here & trying not to get as emotionally involved as I was. Having said that I do worry about Dani & hope that her new treatment is going ok. hugs to you, you've always been so supportive, like everyone else on this thread.
>Z< thanks.
cheers, dee
0 -
Dee- glad to know you're stable.
Thanks everyone for your kind words about my Dad's big celebration!!!!!!
Babs
0 -
babs. I love what you did for your dad. That rocks. !ay I say, you are beautiful. ! Looking healthy and full of life.
Lita. Stable. Yea !!! I too am on X 7 on 7 off. It's been kind to me hoping your tummy issues have resolved.
Dee. Good to see you and stable !!!
Momatt. Haven't heard how Dani's doing ? Prayers always with y'all
Lindae. Looks like pushed doing good. So happy for you
Deanna. How are you ?
My original Mo said 2-3 yearsafter I pressed him hard. Ugh. Had that in my brain for 3 years. Wish e hadn't told me. My current Mo said many many years. Even if I quit tx he guesses several years. Who knows. Living for the day. I am 3 1\2 years out so everyday feels like a bonus.
I've been miserably I'll again. Thought for sure Friday was hospital time. Dh took excellent care of me. The whole diahrea, vomiting til dehydration and then pain that is unreal. Dh kept pumping me with meds. Way more than prescribed but I simply would rather die then go back to hospital. At least that's how I felt then. Of course, now I don't feel that way. Amazing how the physical rules the mental. Ugh. Dh massaged me for literally hours. Finally stopped the vomiting and fell asleep. Starting to feel better. Just so very weak. So scared dss again. Wondering how many times they can go thru it without permanently scarring them. Damn cancer.
Hugs
0 -
Patty -
Yes, it is amazing how the physical rules the mental. I hope you get past this to clear sailing soon.
>Z<
0 -
Thinking of you Patty - Hope your tummy feels better soon and we totally understand you wanting to stay out of the hospital!!
0 -
thanks.
Forgot to say our state just voted to legalize marijuana for specific medical reasons def stage IV cancer included. Not sure what all is involved or how long it takes to get programs up and running but I am excited. Never thought it would happen. I mean the county I live in you can't even buy alcohol. Just wondering if anyone else has experiences with this. I hope it will help the nausea and pain. I don't really think smoking it could good for my lungs but looks like it comes in so many forms now. I hear it is !much different then my high school days. In the hospital acoupke times they tried a marinol pill which didn't help at all but I am told this stuff will be so much stronger. Even though it will now be legal I am not sure I could do it and have my dss find out. They are in their teens and so Impressionable. Do I really want them to think it's ok ? I am not sure. Ugh. Any positive or negative stories ?
0 -
Patty thanks for sharing what your mo told you. I'm so sorry that you've been so sick again! Your husband is an angel ! I hope you feel a lot better very soon, and that you get better all the way around, it must be absolutely miserable to be so sick! I remember being that way when I was on chemo I would like in the recliner for hours and not dare move a muscle because I know if I knew if I moved I was going to get sick! Hugs to you
0 -
Patty,
Glad AR has passed this legislation! It has taken a while for the state to get growers, stores and processes in place in Illinois.
I'm attending an MMJ clinic at the recommendation of my hometown onc right after Thanksgiving and will share the information. I believe some of our "Bone metsers" have been using the sublingual drops of CBD that don't have the THC that causes the "high." It's gotten good reviews. It's supposed to help with pain and anxiety and I read that it helps with nausea too. There is a thread about complementary treatments that has lots more information. There are others here who know more about it!!
Illinois has medical marijuana available, but the process to get the card is annoying. The stores were supposed to have opened in May, but it hasn't happened outside of the Chicago area. The cost for the product is also high. We need to have criminal background checks prior to getting the card issued. I am reluctant to pay to register with the state and carry a photo ID as my reward for being stage IV. I don't want to get high...just looking for symptom relief.
0 -
Patty- so sorry you have been so sick!
0 -
Patty-sorry you're not feeling well. Hope you have a quick turn around!
Barbara0 -
Patty, sorry to hear you have not been feeling well! We miss you and worry when you don't post. I am also interested in medical marijuana. I am not a smoker but I understand it comes in edibles and even topicals. Not legal in PA. Also wonder how it works with employment, still working. But I hear it is very beneficial for pain relief.
0 -
Good Morning All,
After this weekend's earthquake in New Zealand, I pm'd Terre. She said I could tell you that she is doing ok and super busy with her job etc. She also says hi to everyone!
0 -
Thank you Lindalou she is who I thought of first. Great to here she is doing fine. Patty I'm sorry you are feeling crappyi wish for a quick turnaround for you. Yeah to MJ. Being legalized. I sometimes think I'm the stage four poster girl for MJ and cancer. I take so much of it in all forms will get my ct scan result so today hopefully. I'll let everyone know if it's working.
Wendy
0 -
Wendy, I'm going to come live with you and you can MJ me up! Good luck with your scan today.
0 -
patty - I have two girls 10 and 13. I use the cannabis medicinally and very openly with them about why and the effects, etc. It's an opportunity to discuss these things with them and for me it's important to have the channels of communication on all topics open. It is great parenting opportunity. They are very careful and thoughtful about cannabis. Much more concerned about the effects than I am.
I finally took a dose last night that gave me something you might call a "high". It takes quite a bit. I take it just before I sleep. I sensed the spaced out feeling, but I slept through it. Alcohol is a much stronger drug.
>Z<
0 -
Hello Ladies!
Babs - you look great, your Dad looks younger then 95:)
Lita - congrats good scan results!
Wendy - hope your scan results gonna be OK!
Week ago I had brain scan (because often feel pain in temples, so I was scared that cancer cells get there) and is CLEAR! Other argans are CLEAR! Bone - stabilize. So, my onc said I'm responding to Tamoxifen and Zometa and we stay with it (I expected I get Letrozol, I'm postmenopausal over half year, well...). Tommorow I have mammography, i don't know why I tought that after tomography I don't need mammo, that any lesions scan showed already.
I read a bit about marihuana, and during chemo to reduce or totally eleminated vomiting and nausea, the best results are when marihuana is inhaled. It means in form of joint:)
And finally, I know what is it mysterious short for NED.
Hugs for all!
0 -
Beatrix - Awesome scan results! Congratulations.
>Z<
0 -
Beatrix - Congrats on excellent results!
Patty - I hope you're feeling better today.
0 -
So I just got off the phone with the clinical trial nurse. No new mets no soft tissue involvement I am stable. The sun just came out here after a week of rain😊 I'll take it.. I have to say it again ladies get yourselves some CBD . Can't hurt you🤓.
Lindalou come on up😊
Wendy
0 -
Wendy and Beatrix. Great news for you both!!!!
So happy!!!!!
Yippee!!!!!
Babs
0 -
Great news, Beatrix! And more great news, Wendy! So happy for you both!
Patty, I hope you're feeling much better by today!
0 -
wendy. Great news.
Thanks everyone for your input on mj it sounds like it's def worth a try. Now just wondering how long it will take the state to get anything going. I'd try about anything to get rid of the vomiting and nausea and pain.
Had another horrible night. Ugh. Praying to stay hydrated and out of the hospital. Thanks for the support all
Hugs
0
