Bone Mets Thread
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Z was a tough month on BCO. It might not have helped. Your head gets to explode from time to time. You have helped me so much. I sometimes feel i should prick myself, because how else could it be that we are at the grocery, going to math projects, and the to pet/ct?? I think the brain gets wired to be able to sustain that type of intense life. One step at a time.
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Take care of yourself Z, let your head heal and we will see you when you are ready. We think about you everyday.
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Mom and everyone...I have pain from degenerative arthritis and bulging discs, as well as the cancer pain. Once I'm off my latest chemo cycle, MO thinks acupuncture may help. Need to get another recommendation tho. I know of a good one, but she's way over the mountain and thru the pass. Another is one on the Peninsula, and that would require bridge tolls, etc., but you have 2 find someone who knows what they're doing or its a waste of time and money.
I'm at the Social Security office now. State Dis has run out, so signing up for more SSDI.
Have a good weekend, ladies, and try not to ruminate over Mr. Cancer too much.
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Z-hope you are ok...
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Artist. Enjoy winning all that$$$$
Kaption glsd you're feeling better!!! Do something fun though!!!
No real answers. They don't know why I had the pain where I did. Nothing showed on my spine MRI. that would cause that. I didn't have a UTI after all. And it's a wait and see on the rest for now. I guess no news is good news. Enjoy your weekend everyone!!!
Babs
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For anyone who, like MomATT/Dani, is considering trials with the AR Inhibitor Enzalutamide (also called XTANDI), the manufacturer put out a statement updating the drug this month, for the upcoming ASCO meeting, which includes the note:
"The companies have also decided that based on the enzalutamide data from the Phase 2 HER2+ and ER/PR+ breast cancer studies, there will not be follow-on Phase 3 studies at this time."
Which sounds like the drug isn't doing great in the phase 2 trial for this type of breast cancer.
Zar, I'm with you! It's summer, time to take a break!!
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Hi Curi-ous I actually just sent you a message and to Zar, first you guys were just a rock!! Thank you so so much for being there. I used all the info you provided so freely.
Could I ask you to send the exact link, I wanna send it to doc, she seems adamant that it's gonna work. I tried going to ASCO but could not find that paragraph.
Thanks a lot.
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Babs I am happy it's not worse. They left you in suspense all this time? At least now you know. Have a great weekend.
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MomATT, if I remember correctly, Xandti was the last med Hope (Romansma) tried off label. It was extremely tough on her... not a good outome... Please look at some of her posts. I will also check PMs and emails when I get home later. (in car now on a phone with issues)
Z, glad to see your post. I was starting to worry.
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Deanna yes, it was from Hope that I knew about the AR business.
Agh.. this is not sounding so good.
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Deanna yes, it was from Hope that I knew about the AR business.
Agh.. this is not sounding so good.
Be careful in the car, i also don't do well when I write on the phone, i have to wait to be at the computer.
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Thank you all for the birthday wishes. Hoping for a few more!
Hugs to all and enjoy your weekend!
Anita
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MomATT: Here is the link to the information about the AR inhibitor, its a press release that the company put out a couple of days ago- the part about not moving forward to phase 3 at the present time is in the fourth paragraph.
http://newsroom.astellas.us/2017-05-17-Astellas-An...
On the other hand, you have terrific doctors who do feel this is going to work, they feel this is her best next short, go in armed with your questions and when you meet the MO about the trial and to tell you stories of people who have had success, how long will it take to see if it is working, what are side effects, how quickly might she feel better, etc.
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TMs from yesterday are in. They went up again Ugh!!! This gemzar really needs to kick in. Had my 3 rd txt last night. Another one next week and then my week off. Hoping these increases are the kick off before TMs start going down and Gemzar begins its magic!
Babs.
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Babs,
I was freaking out my TM were 2500 the last time on May 3rd after my first round of Xeloda. I'm hoping as "Z" told me it's a flair. Very scary to me. I am hoping this works some magic too.
Anita
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Curi-ious I'll send her the link. Thanks so much for all your support. Gonna double down on my questions!
Babs, what can I say to make you feel better? When would they do the scans again? This is so stressful. Hope, hope.
Zar love thi link you sent about the other trial thanks so much.
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I wanted to mention a couple of interesting new drugs that are coming along, one for Her2-positive and the other for triple-negative:
1) Tucatinib for HER2-positive, cancers and in combination with Ibrance/Faslodex for Triple-positive cancers
https://breastcancer-news.com/2017/01/18/tucatinib...
2) The first CDK7-CDK12 inhibitor (at last!!) which just started in trial for triple-negative MBC, but might work in many cancers if combined with PARP inhibitors! Am keeping my eye on this one..
https://breastcancer-news.com/2017/05/18/syros-enr...
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HAPPY SUNDAY EVERYONE! Sometimes I just wish I could be as carefree and happy as this baby sea lion. I took it in the Galapagos in March. It was as if it was smiling at me and I thought it would be nice to be like this carefree, happy, beautiful creature. No worries, no MOs, no medication just carefree and happy. I know we all have our bad days, I have had a few lately then I think of the beauty in nature and all that we have to be thankful for and I put my troubles aside. Does anyone else ever feel this way? I think that if I didn't have my photography of wildlife and other nature photos I might be out of my mind. Hope you all are feeling the best you can under the circumstances. Thinking of everyone today and every day. Just think of the smile this little guy gave me!
Hugs,
Anita
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Anita, I feel the same way when I head out with my camera. It helps me take my mind off of cancer and just concentrate on what is around me. Have you entered in any juried shows? The sea lion was for sure looking at you! Thanks for posting the photo.
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Linda, I have never entered any of my photos. I have traveled all over the world and did underwater photography and have been asked to enter my photos but I never had. I've traveled to Africa at least 9 times and stayed in the bush with all the wild animals. I have great photos. The closest I have ever gotten to any credit was my Pel's Fishing Owl. It was put in Africa Geographic. I love my photography and I started doing land wildlife after my first bout with BC. I'm going to Newfoundland in June hoping for Puffins and Gannets. Maybe some Orcas and Humpback Whales. It keeps me sane as best I can be.
Hope you are feeling good today!
Hugs,
Anita
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Anita, love your picture, so candid and precious! I love pictures, my house is covered in photos of family and friends, there's no one else that I'd rather look at! I admire people who have the talent to capture such beautiful images. Thanks for showing us your work, please post more if you're so inclined.
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Photogirl
I spent two years in Newfoundland in my twenties I was in the military and stationed there. Water street is wonderful lots to see don't let them screech you in (you'll find out). I was posted in Freshwater in Placentia bay on the furthest eastern point. Mary's cove is a wonderful bird spot thousands of sea birds perch there. Have a great trip and bring a jacket. Love the pic
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Curious - thank you for following those drugs ... the research is particularly interesting when our lives are at stake, no?
>Z<
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Couldn't agree more. Almost had a heart attack along with every other side effect possible today after an attempt to clean my bathrooms. I opened a letter from my health care company called "summary" oh how I love those monthly reports on how sick I am and how much my medicine costs each and every time they stick me with an unsuccessful blood drawing event. So now that they have sent this wonderful story of my life and how they have written to tell me that I am in the catastrophic category! As if I didn't already feel that way, why not put it in print and send it to me in writing.? So I am reading through, and oh gee as I read on they say by the way your prescription was denied. So I read on and it is the ibrance!!!! Only the most important medicine i am on. Never mind a. Phone call with someone saying hey something wrong here. They send a summary.??Seriously ??? Oh that's no big deal. It's only to treat cancer. No big deal. So I ended up researching everything and anything I could with my prescription, and and health plans,(after over an hour of sheer panic and terror) it turns out the specialty pharmacy tried to bill it a day too soon . Don't you think someone should have looked a little closer, to the issue?, before you send out a notice like that to someone ? That the medicine costs $11k per 21 pills? Maybe wait a day and then resubmit the dang thing? And not send a letter at all??? Stressed me out to the point where I need a nap. People can be so clueless or careless. Either word applies. Ugh! Maybe instead of a nap I should go try kick boxing !! Blow off some steam. My luck id break a leg! Have a good day ladies. ~M~
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Thanks Wendy. I will take your tips. I am really looking forward to going there. I heard the migration of shore birds is amazing. If I get a few good ones I will post them. I figured it might be cold in June so maybe winter coats might be good. For some reason these meds I'm taking make me extra cold. I'll let you know how it goes. Hope your doing ok. I'm sure the treatment is not very exciting but let's hope it work miracles!!
Anita
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Hugs Micmel. There are a lot of hoops with $11K per month drugs, which probably makes sense. Stuff like that happens all the time, but it seems like the pharmacy and the doc just deal with it. I just ignore it and it goes away.
It's not the end of the world if we get pitched off ibrance anyway. More excited about Abemaciclib.
Your awesome exercise routine is more beneficial than any line of treatment any way. My enthusiasm for these chemo drugs, targetted or otherwise, dampens daily the more I read. We all have to get off this chemo merry go round onto immunotherapy.... and it is coming.
Here is a note from Adventures with Cancer... ERPR+ MBC and cured by the NIH's Tumor Infiltrating Lymphcytes trial. I contacted them but not eligible until I progress on my first line treatment. Also, I need a resectable tumor but I have none at the moment... if and/when and when I qualify I will be on a plane to Maryland.
>Z<
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Z~my DH and I have a house that is located ten mins from the NIH, and we know many people that work there. I am going to start asking some people about what you just mentioned. They have already have my file, and one of the people that belongs to my DH and DSS's scout troop works there. I'm going to see what I can dig up. Very interesting to see. Thanks for the mention and thanks for the words. ~M~ I also do not have a resectable tumor either, they took that out almost a year ago. There is always so many hoops no matter what you're dealing with. Do you know what company is running the trial through the NIH? I know Pfizer did ibrance and Novartis the sister to ibrance,kisqali. I'm going to ask around but thanks for mentioning it as usual. !!! I Am going to keep up the running. My bday is coming this week, I think I'm going to ask for new running shoes. And Win the lottery. ~M~
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Thank you Lynnwood1960. I love to photograph those special moments with birds and other wildlife. I'll share more for you to enjoy.
Thanks again,
Anita
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The Twin Peaks marathon on HBO is taking my mind off monster cancer.
Forgot how great the show was...quirky writing, music, lighting, superb acting. New series starts tonight. 😆
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Anita thx for the gorgeous pictures.
Z all I could think about is the research. Even if most of the time I don't understand, I take breaks in between to seem normal, but my mind is always wondering. That's the truth.
Micmel it's careless, as if they literally would be machines. You should be a writer, love the way you write. And glad your heart is still intact. Would be great if you could look into more info from pharma friends, why not. E/t and A/t could help. Thank you so much.
Z I honestly cannot believe the miracle with Judy, I remember in her early diagnosis, it looked so grim, they really wrote her off. I have an email ready to send out tomorrow to them, hopefully we'll hear something. And I told Onco about it, she said the more info you have the better. Thanks to your advice. And Curi-ous i didn't sound like a total dope when I spoke to Onco.
Lita good for you, enjoy.
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