Bone Mets Thread
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My DH has been going thru his late mom's photos, and he found this one. Can't believe how dark my hair was 15 years ago. We had just adopted little Tiffy here 2 months earlier. She's 8 mos old in this photo. Her registered name, Tiffany Konishiki Bullman (daughter of Champion Silverspoons Custom Made "Cody"). She was certainly a feisty character. She went over the Rainbow Bridge in Nov 2009. She was only 8 years old. We miss you Tiffy!
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I can't remember if I ever posted in this thread or not, but I follow it all the time. Along with everyone else, it has been scan time for me, too. I had an MRI, CT scan and bone scan. The latter two were because my insurance didn't see any reason why I needed a PET scan.
Just thought I'd share some good news with you all. I had a brain MRI on April 26 to check and see how well the radiation in January has worked. I got the results this week and all the little spots have completely vanished, the cause of my seizures has reduced from 1.5 cm to 6 mm (!) and the largest tumor is making progress from 2.7 cm to 2.5 cm. I could already tell there was improvement (no seizures, facial tingling gone, headaches departed), but it's really nice to know how well it has worked.
My bone scan showed some increase within the bones already affected, but no new bones are involved. My CT scan didn't come out as well, with significant progression in my lungs and some progression everywhere else. I have now tried Xeloda and then Gemzar, neither of which slowed anything down. Now I am joining a phase 2 study of Atezolizumab with or without Entinostat in patients with advanced TNBC (https://clinicaltrials.gov/ct2/show/NCT02708680). I was already interested in immunotherapy. Now we shall see if it works for me.
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ok, i wondered away again and lost my update, but i am doing much better than i thought....I wrote lots more but now its gone. Thats been happening for 5 days now.
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Im back on the deca now again too...oh my, I hope I dont eat the train....lol....I was on it when I first signed on Nan...ate...one...too...and I did too!!!
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Just love those hats and umbrellas.....I would have gone right off the road!!!!!!
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Love the pic, you all look very happy.
RIP Tiffy ❤️
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Lita, I always admire your positive attitude and smile. That smile rocks!
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RGC, Thank you for posting! Many of us are very interested in clinical trials, and try to keep up as we could need to find one at a moment's notice. I am excited about this trial you are joining- immunotherapy for triple-negative breast cancer can be very durable and effective. Atezo looks from the outside to be one of the best of the checkpoint inhibitors, and in this trial they are combining it with Etinostat, which is an HDAC (epigenetic) inhibitor. I recall reading an article where they tested about 100 FDA-approved drugs in combination with immunotherapy, and HDAC inhibitors were the top hit. Moreover, HDAC inhibitors like Etinostat were reported cause an increase in PDL-1 expression, which could be why these drugs synergize with immunotherapy. So please let us know how you fare, and what the side effects are like!
Other targeted drugs are on the way for triple-negative cancers- CDK7 inhibitors were reported in Cell to preferentially work on triple-negative cancer, and one has entered clinical trials already (but for leukemia, not breast). And there are other trials looking to combine agents like PI3Kgamma inhibitors with immunotherapy to increase the number of responders. Ask you MO if they recommend taking probiotics, which generally stimulate the immune respone and can synergize with immunotherapy treatment. Will you know if you get both drugs? Best of luck!!
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Wow, this thread does move fast! Babe, I'm so bummed out for you that you had to go to the hospital alone. I 'm not sure could bear it well. I'm such a scaredy cat cry baby. Glad you got back home and relieved to hear it is probably not BC related although the pain is still horrible. Hope you get answers and relief soon.
Patty, that's awesome. A new place to nest in. When we moved this January it was a wonderful distraction from all of this crap-ola. I took my time and put a lot of thought into decorating this time and it is so cozy and warm. Today we emptied our storage and joined the community wide yard sale. Just threw open the garage door and unloaded a lot of leftovers and made a good chunk of extra cash. Also met some of our new neighbors. Then the big rain came.
Deanna thank for the update on Carol. Glad to hear she is home and hope to hear that she gets n a new effective Tx soon. i would like to send her a card too..
Nice to finally hear some good news from you Wendy. May Taxol kick cancer butt for a very long time.
Jenn, I think the gall bladder is something to ask about as well. It is so very hard to see your loved ones i pain. Your Mom is so very blessed to have you.
roc, Great news about the brain scans! My insurance lately has refused my PET again as well so it will be a CT and bone scan for me May 17 my birthday.....
Pretty exciting news about the trial. I've heard a lot of good things about it working well on Triple neg too.0 -
LItaI didn't realize beets are that healthy. Now I just have to convince Dani about it. Borscht, my mother used to make it when I was young. Not bad at all. How are you feeling? I am amazed at how I looked a year ago, are you kidding? Nice to have these memories! Sorry about Tiff
Babs so nice to hear you are comfortable with SIL. How is the pain, any better? That's really weird about the pain.
Jennmad what's with the liver? Sometimes if the liver is enlarged it could be pushing into the chest area, and it causes back pain, did the CT show anything in that area?
Patty that's wonderful news. So exciting. New beginnings.
Wendy that's great news. And nice that she called, that is something they usually don't do. Sorry for the separation, no it's never easy.
Rgc77 I know you from the brain thread. So happy for you that the brain mets calmed down. And so sorry everywhere it's still raging. This Immunotherapy is quite new, but it seems like it's good stuff.
Interestingly this is the Immunotherapy they are giving my elderly Uncle with Metastatic Bladder Cancer, it's every 3weeks one week off, in another week and half he gets his 2nd treatment, so far I think the SE is fatigue. (or it could be just him getting drained, not sure).WHenare you starting?
Cure-ious hey I've missed you, thanks for more clarification. i gotta get to the other threads.
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Another "Derby Day" pic with DD and me on our way out to dinner to celebrate her "pre-graduation" dinner. (She graduates from college next week.)
The roses in our hats are from my garden. Thanks to recent rads, I can at least stand up for more than 90 seconds 😅.
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Lita~ she rocks those hats like her mother!! What a special day. Nothing nothing is more important than that family is. Sweet hugs. You look great. ~M~
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Lita, you have the prettiest smile! Lovethose hats! So glad to hear you are feeling a little better! Big hugs!
Babs, doing scans or any of this alone is so hard! I do completely understand your urge to protect your family though. Tom was my rock for years, and now I do all my scans alone. I break down in tears occasionally in the machines just from the aloneness, moreso than from fear. Big gentle hugs for you, and tons of prayers
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Lita. Your daughter takes after you. She too rocks hats!!!!
Gracie I'm sorry to hear you now do your scans alone. For the first time I've walked in your shoes and it's really not easy!!! I admire your strength!
Bab
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Babs GM!! How are you today?
Lita aww how lovely. She is like your twin. How wonderful. The flowers touch, like that. And your willpower. Enjoy it!!
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Best derby hats and smiles of the day, Lita! Most of them were ridiculously silly. Great photo of you and your DD, and love the earlier one too.
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Lita you look great. Missed the Derby but was hoping that Patch would win. Love you photos and I wish I had a dog like yours they are so funny!!
Enjoy your day
Anita
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Babs, I thought of you going it alone and so wish I had been there with you! It is the loneliest of times and I wish you wouldn't have ha to experience that!
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Gracie~ Sometimes family goes with me to my blood work and things ,scans etc. but if you think about it at the end of the day. We all scan alone. They can't fit into the donut hole with us. I have done my share of crying in those tunnels. I choose sometimes not to listen to music because I am so sensitive to certain songs I just can't listen. Especially "if something should happen" by Daryl Worley 😰😭, I made the mistake one time of having the headphones on, and I kept saying to myself. Please don't come on , please don't come on, well guess what. It came on. Cried the entire time. Taught me a lesson. Now I barely Put on the radio in the car. Just not strong enough around scan time to listen. I hate itthough. I used to love music so much. Now everything reminds me of what I used to be. Now that these little suckers have taken up residency in my pelvic bone area. Another thing I used to love to do. I have certainly had enough, throw in a bad cold and I am just whipped. Hope everyone else is having a better weekend. Sending waves instead of hugs. Don't want to get anyone sick lol ~M~
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Lita57. you both look absolutely beautiful
People will see those lovely smiles for miles
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Speaking of scans and being alone, DH had to go back to work after taking the winter off and is out of state when I have my NM contrast & CT scans on 5/29. I'm thinking with my good response to chemo, I shouldn't see any progression but I know that's not necessarily the case. I sure hope I don't have to break any bad news over the phone. I was just thinking that this part sucks but who am Ikidding, all of it sucks, lol
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Know that you will not be alone on 5/29 during your scan, we are all here for you. I pray everything goes well for you and everyone else who is undergoing the scan anxiety..
Ronnie
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Jennmadd, I think the mets are causing your Mom's pain. When I was first diagnosed, I had a hard time with crushing chest sensations upon rising, and also pretty severe pain. I had a non displaced rib fracture also, which showed up on CT. I got relief from a heating pad and tylenol with Ibuprofen. I was on the verge of moving on to Tramadol for the pain, when my first cycle of Ibrance/letrozole kicked in and saved the day. My pain subsided almost completely. Talk with your Mom's MO,so she can be made comfortable until the treatment starts to work.
Best, MJH
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Lita- just LOVE your pictures and your wonderful attitude !
RGC- very interested to hear how you do with the clinical trial. I was originally planning to be in a trial including Entinostat + Letrozole but my bone marrow biopsy came back Triple Negative so I wasn't eligible....interesting to hear that Entinostat is in trials for Triple Negative...my ONC thinks it's very promising...keep us posted !
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Just wanted to give you all an update on my mom. She is doing much better. She is having to take pain medicine every 6 hours but is able to get up and move around and is even going through with their plans to take a trip to the beach tomorrow. God is good! She also started her treatment of Ibrance and letrizole yesterday. Praying that some of those new spots disappear and some shrinking on the others.
Momallthetime- the liver looked good. She has quite a bit of bone involvement. And "too many nodules to count" on her lungs but those are all pretty small. I am just so relieved that she is able to manage the pain at this point. I have been stressing to her to stay on top of the pain meds. I don't want her to have to go through that again.
I think I should call her oncologist tomorrow to let her know of what happend on Friday. I'm sure it's in her chart but I want to be sure.
I've been thinking of all who have had scans recently. Praying for regression. And I have to tell you all again how incredible you all are! Thank you, thank you, for helping me try to figure out what's going on with my mom.
How do you post pictures on here?
Those umbrellas were very cool!!! What a sight to see
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Jen when you go to post your reply, when you preview your posting look above. Look above on the bar and there is margins and paragraph forming, there is an insert choice for pictures you pull through your computer or phone. Give it a try. I had a good laugh this weekend now that you mentioned pictures. I have a walker coon hound named Deeohgee, and he is always hunting. So he got himself stuck in the trash can lid, while Hunting He came downstairs like this....." No mommy I wasn't in the trash really!" Have a pain free day, Hugs ~M~0 -
Micmel,
Thank you for posting this pic made my day! Too funny..
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Micmel love the dog pic so cute!😊. I tried to post a really good video of a regatta I took part in this past weekend. Yes ladies you heard right paddled in two races and I felt great the sun was shining and I felt so alive. It's those little moment I live for.Here's my puppy😘
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adorable !!!! Love my puppy. Love your puppy! Got my results back today. Nothing new in soft tissue. And bone mets are shrinking and stable. Thank you all for helping me through my scanxiety! You are all wonderful, each and every one of you!
Wendy~ that's awesome. Clapping my hands. You go girl! Clearly your strength is coming back. I am so inspired!! Hugs!!
Ronnie~. It made us all laugh for hours actually. Lol dogs are silly little creatures. Lol
~M~
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Go Wendy. Yes, the dogs are cute but I am a cat person now. If I even mention dogs, I get a stern look from my cat. He has no patience with anything that takes attention from him. Nothing annoys him quite as much as my computer, though.
>Z<
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