Bone Mets Thread
Comments
-
So sorry to hear about Carol. Another angel is now in heaven!
Bab
0 -
Lulubee - so happy to hear from you and I appreciate knowing that you are just busy with life.
I will miss Carol. I am glad to know she is at peace ...
Louis - walking even in very small doses will help move water out of kds system and deal with stress and sleep issues. I am sure it is the last thing she wants to do but I see thing turning around and it will speed recovery ...
Z
0 -
(for my liver mates, sorry but the beginning is repetitive)
So finally the PET/CT was done, after the going back and forth with Insurance. We haven't heard from Onco, this would be too much to ask. We got the report a few hours after Dani finished the scan. PCP got it, and sent it to us. It's not good. There is progression in the liver particularly, with words like confluent now, where it was not like this before. 6cm is one for example.Bone mets, few are stable in FDG some got more avid, and larger. C1 which scares me, and others. Of course the lung nodule is still there, the last time Onco did not even mention it. Brain MRI tonight.
Zarovka sweetie, thanks so much for the caring PM and the enormous amount of info and help in getting me to even start somewhere. You are great.
Babs dear, thanks for your concern. Hope you are doing better todayWho could tell me about the TP53 -I reread the F1 report on Dani, it says that it's splice site 375 G>A , WHAT IS THIS? am thinking because of Jen's link of Taxol with Reolysin, so I am grasping at straws does it make any sense? She has other alterations, but it's this something we could work with?
Curi ous love to hear what you have to say.
Have no idea what Onco will hopefully recommend tomorrow, I'll email her again, and we'll see what she responds. Her answers are usually one sentence. I think it's best to see her personally no? We'll see if she will grant us a visit. The last time when we had to decide about the trial, she gave in to my insistent emails and called me, she was gonna take care of it through email. She is a decent person, I think, BUT i think for sure she has that wall set up as not to get too involved. One time, she responded to something I asked, and kinda suggested that D could be emotionally vulnerable, when I asked what she meant, she DID NOT respond, i let it go.
0 -
Linda so predictable the compression. If they waited so long, could they not start with Rads and then you do the chemo?
Wendy you are too funny! Red heads I hear have all the fun.Wendy when you say liver …..which one is that? The Alkaline Phosphate was elevated, is that what you mean? Annie is right, you do resemble Julia.
Bigbhome it's a matter that they have so much to offer, and you just started so….
Ronnie I just saw your post, my experience was that I knew I was dreaming, it was not pleasant. I changed to Ambien, it doesn't cover long hours of sleep, so I learned from the net, I break the 10mg pill take the 5 when I go to sleep, it takes a little time to work, and then take it again If I wake up in the middle of the night.
Gracie it's good that you checked about the meds.
Lita what a dream. I am so happy for you! Beautiful picture.
Lulubee well I guess doggie knows there are more important things.
0 -
Jensgotthis, yep it's been a hard month here, hi to you. Very interesting the link you sent. Thx a lot.
Photgirl that's so special of you. Gorgeous pictures. I am sure everyone appreciates it. USE your hubby
Lindalou it sounds marvelous.
Lynne how are you doing? Recuperated? So glad to hear you had good results from the surgery.
Aurora, that's gr8 news, I remember for awhile you only had progression. Good that you are getting the CT for the chest.
Cure-ious I was reading it, it seems really good stuff. Thanks for making it easier to understand.
0 -
MommaATT- what part of the country do you live? I was looking at some of the newerclinical trials, perhaps we can make a short list for you to add to your questions to ask Dani's MO?
Hope you are enjoying mother's day- my mom is 87 so we made brunch at home, waffles with fruits and whipped cream and guava mimosas!
0 -
oh my that's delicious!! those home meals are the best.
We are in NY - thank you so much. Tonight she went for the Brain MRI, will prob know in the pm about it. Curi ous what did you think of the tp53, do you know a/t about splice what does that mean? Would that thing that Jen mentioned be interesting. Thank you again.
0 -
MomATT- I think you should just call the trial to ask them about p53 mutations and eligibility.
We have also heard on these boards about great results coming from patients who were in dire straits coming from the Phase 2 trial pasted below. The trial requires that the patient has progressed beyond the first and second treatments for MBC, and has also had some kind of chemo treatment for MBC. The trial is only at the NIH (in Bethesda, MD). You can call them for more info and to get an appt to see if Dani is qualified, if your MO decides that she needs to change treatments and you want to give it a shot...
NCT01174121
Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic CancerNational Institutes of Health, Bethesda, MD
Contact: Colleen E Buckley, R.N. email: ncisbirc@mail.nih.gov
(866) 820-4505
Contact: Steven A Rosenberg, M.D. email: sar@mail.nih.gov
(866) 820-4505
0 -
It's on my to do list in the AM. That's exactly what Katharine so kindly advised me to do also. She gave me Colleen's # also. I was looking at this trial you mentioned, I just wasn't sure if it was for her. Would they let her get in NY? I don't see where they are offering it. I will check. But her having this splice business means she has the tp53 to work with? ( which from what I understand of course is not good, but on the other hand they have what to target)
Thank you.
And then maybe she will ask if D should go for Taxol. She did put it on the line when we were deciding to go with the IMMU132. And the question is also, why did that not help at all. They called some (few) stuff stable in the scan, but really just because it did not progress. God only knows what the brain scan will show. But what were they trying to target and did not? I don't think they have any idea what's going on, I am closing my eyes and I'll holler just give her #9 or #20. They don't know.
0 -
mom - I've been watching reolysin closely for over a year. Viral treatments are hugely promising but might still be early. Your research MO would be good at evaluating that for Dani. Interested in what she thinks... but I am not sure. PM me for full logic.
That NIH trial, as you know, is in my short list.
Z
0 -
Mom - This makes me crazy that you have such a hard time getting to talk to your Onc. To even make you feel like you are inconveniencing her is unconscionable. As a person who has been trained and working in the field for many years she should be much more understanding and compassionate of her patients nd their caregivers. I just don't get the disconnect.
Louise, I think everyday of my DH and how hard this is on him. My disease has turned his life and happiness upside down. I thank God everyday for his strength and bravery. He has never wavered in his support and love. I would never get through it without him. You are an absolute Prince and Angel all rolled into one. Never doubt for a second that your roll in all of this is also a very difficult and rough road and you need some TLC as well.
Such heartbreaking news about Carol. Rest in Peace dear lady.
0 -
Wendy ~ was thinking about you on the 13. I know it was your two years out from diagnosis , you are powering through taxol, rowing your heart out and rocking any wig you choose. God bless you and you're seriously kicking some ass!! Hugs and many many many many endless many more years you will have!!!
Happy Mother's Day everyone god bless !! ~M ~
0 -
Wendy, Thank you for letting us know about Carol's passing. I miss her already. We had texted and talked to each other fairly regularly until late March when her pain worsened. I always looked forward to her texts which eventually became, "Can I call you?" We could talk about anything but politics. On that subject we could not agree, so it was pushed aside until the day after the November election when that little devil in her emerged. On that day she called me and we talked about how soon she would be moving to Massachusetts and about her upcoming family trip to Orlando over the Thanksgiving holiday. Then she said, "Hey, hon, I've been waiting for you to congratulate me since my man Trump won the election." I quickly said, "Ouch, that dagger went right to my heart", and we enjoyed a good laugh. We all know that she did all she could to fight this disease. She even followed a vegan diet, something she told me she hated, btw. She found happiness in every day, and was very happy to live near her children and grandchildren. She never gave up hope, and I am sure you all remember her roar. As I left her hospital room just two weeks ago, she told me to continue to pray for her and that she still intended to meet me for lunch someday soon. I will never forget Carol and the support, encouragement, friendship, and love she provided. May her family find peace and comfort and remember Carol for the joy she brought to their lives.
Lynne
0 -
The news of Carol's passing hit me hard. Don't get me wrong, I didn't know Carol, but I know many of you did and were close to her. It's just very sad that we have to continually go through this.
As it is I lost two personal friends to lung cancer last week. My friend Bob passed away early in the week, and the mother of one of my daughters high school friends, Cheryl, passed also.
It really makes you sit back and wonder why we have been fighting this cancer for so many years, centuries actually, and still have no cure.
0 -
sorry about that I hit send by mistake
All of this is just beyond me. I guess the best I can do is just to live my life, and hope that by changing my diet and exercising I might change my health just enough to enable my body to fight a little harder.
Sorry for such a grim outlook this morning I guess I'm just a little bit depressed! I've lost so many people I care about t cancer in my life and truthfully have lost very few to anything else!
0 -
50'sgirl (Lynne) - thank you for sharing a bit about your relationship with Carol. It's always nice to hear when people from the boards have met. I'm still stunned. I can't believe it. I kept thinking that it couldn't be Carol "Lovesmaltese" - it couldn't be that Carol. I kept meaning to reach out to her since she had family in Newburyport but I never wanted intrude. I wish I had now (reached out - not intruded). It is always difficult to accept when one of us has gone. It's been pretty gloomy in New England in recent days and the news of Carol just makes it gloomier. Sigh...
0 -
Like everyone else, I am truly devastated by Carol's passing. Here's a photo I pulled off her FB page. I've also started a tribute page for condolence messages. The news hit me really hard on Saturday, but I have to say, like Lynne, it's devastating today, knowing her name and number will not be popping up on my caller i.d., as it so often did. Rest in peace, dear friend... You are already and always will be very missed. https://community.breastcancer.org/forum/8/topics/...
0 -
Hi Deanna - thanks for posting the picture of beautiful Carol. It's a real punch in the gut. Heavy sigh...
0 -
I didn't know Carol but she is one of our MBC sisters, I know she is in a better place with no pain only happiness.
Ronnie
0 -
thanks for letting us know about Carol and for posting the pic. She looked so healthy in it. She will be missed. Darn cancer took another one of us way too early. Will be praying for her family.
0 -
she already looked like an angel in that picture, she's beautiful, lovely smile and kind eyes. I so hate this disease, I pray her family finds the strength to carry on and survive in this harsh world. I can't believe that cancer has taken something so young and beautiful again. There truly are no words that even say anything close to how this horrible disease makes us feel. God bless you Carol, and I am sorry to all of you ladies that were close to her for your pain and sense of loss. Carols family and all of you MBC sisters are always in my prayers. ~M~
0 -
I "met" Carol in another facebook group and we discovered that we were both on BCO also. Lovely lady. Thanks for posting her beautiful picture. To those here who were close to her, I'm very sorry for your loss
0 -
Thank you Deanna for posting the beautiful photo of Carol and for starting a tribute page for her. She was fortunate to have you and others from bco as her close friends. I will miss her.
0 -
She was truly beautiful and although I was not super familiar with her I remember some posts from her with a positive outlook and encouraging others. It is so hard every single time I hear this news. My condolences to those who were close to her. Thanks Deanna and Lynne for giving us the recent updates. Rest in peace Carol and prayers for her family.
0 -
I was thinking about Carol and all the lives she had touched. Wouldn't it be nice for her family to know the other side of Carol that they most likely didn't know about. My family would love this I think. If we could let them know the funny stories or how she had cheered us on on bad day etc. Idk just a though
0 -
Artist I agree with that. You know I've read a few non fiction books where doctors had to become patients, they all say the same thing. They see things in a different light. It's unfortunate, but it's the truth. Thanks for being there. I caught a peek at your sweet family in the other thread, gorgeous!!
Lynne thanks for sharing….you are so sweet. So nice to know she had these relationships.
Gracie it's a rough ride. But you've got those adorable young men, you gotta march on.
Oh Deanna such a gorgeous picture. I honestly cannot believe it. She emailed me not long ago, she told me she was not able to deal with BCO but heart was with all of us. A tragic loss.Thanks for the condolence link, and it's so nice to know you were in touch with her.
Micmel I love your energy in this thread.
Still don't know which direction D is heading. Onco was too busy to send back a message. I hope she's breaking her head trying to come up with a sensible idea, but just a " we are working on it" mention would be nice. Tomorrow we have an appointment with RO for brain mets issue, i guess we'll find out more from her. I think.
0 -
Hi All.
I am new to this site and thread, and am in awe at how supporting you all are. I send my wishes and prayers that we all will have the strength to make it through. I was diagnosed from the start with Stage IV with bone and liver mets. I was put immediately on Ibrance/Letrozole and just completed my 11th cycle. I have had really good results so far. This cycle I have increased fatigue and just started some swelling in my ankles, but since I see my ONC Thursday, I will wait until then. I appreciate all of your advice and expertise and look forward to more adorable pictures of your canine friends. Since I live on a condo 4th floor, I have a cat, but she knows when I need her.
0 -
Deanna. Thank you for posting such a beautiful picture of Carol. We had Pm!d a few times and I felt her support encouragement and love for her bc sisters. I really hate bc. It's so hard when we have a loss!!!!
Wendy I failed to tell you how great you look as a red head. You go girl!
Artist. Your family is beautiful. Enjoy all the wedding planning. I loved being able to do what I did for my dd. Now my next bucket list item is to be here when she has a baby!!!
Today they did an MRI of my spine. Not sure why this was planned but I see my mo on Friday so I'll have a Lot of questions to ask
Momall. Keep us posted on what the RO says please
LIta congrats on your dd graduation!!!! These occasions are why we fight as we do. They're so very special.
To All. I hope everyone had a great Mothers dsy!!!!
Babs
0 -
I have a question that I hope to get some info
It's not for me,it's for a young girls who has lung cancer,stomach,adrenal,on the outside of her chest and a few nodes
I need a straight answer
My name is FireKracker...and I'm beyond devastated..
0 -
what was the question ?
0
