How are people with liver mets doing?
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Hi Shetland - the SERD I will be on in the trial is a pill not an injection.
Had my liver biopsy yesterday and naturally I couldn't have a smooth experience. Blah! First it was going to be a CT guided procedure but then the Dr. said he thought he could get at it better with an UltraSound. I asked him where he was going to enter - from the side of my ribcage or under my rib and I pointed on my body so he'd know what I meant. He said most likely it will be farther on the right side and not really under my rib. He spent a good amount of time with the UltraSound wand - I was beginning to wonder if the lesion was hiding on him. At some point they started giving me the conscious sedation and I kept waiting for it to kick in. It seemed to take a long time before I felt anything. I started to feel a little funny - in a good way - and then I wasn't really sure what was going on around me. But then all of a sudden I felt this strange pain in the middle of my upper abdomen and under each side of my ribs. I never felt anything like that before and it affected my breathing and I felt like something was bubbling up in my diaphragm. Very unsettling. I could hear myself moaning for what felt like a long time and the doctor and the nurse were reassuring me that I was ok. They pumped in some pain meds and slowly I felt better. I noticed that I had a bandage high on my abdomen in the middle of my ribcage. Apparently they went in through the abdomen and not the side of the rib cage. There are muscles and cartilage in that area that must have been penetrated and that was the cause of my pain. At least that was the explanation I got from the nurse. I was not in pain after that but still sleepy. I met with my new oncologist and I told him what happened. He didn't look happy but he pressed on my abdomen and seemed satisfied that I was ok because I didn't jump when he touched me. I thought I was fine and home free but then after dinner I got severe stomach cramps and nausea. I spent the next few hours feeling pretty sick. I finally was able to fall asleep but I haven't felt well most of today. I'm much better than last night though. Just glad to have it over with. Onward to the trial. I start the new treatment on Thursday 5/18.
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Animalcrackers- Oh Yuck! Always something to take the joy out of life...what an unpleasant procedure you had to endure... Relieved you are feeling better
Best, MJH
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Cathy - That is awful. I am glad the pain is over but that is quite a traumatic experience... please take care of yourself this weekend. I still think it was important to do. Interested in the results ... and how you do over the weekend. Please check in.
How is everyone else doing?
>Z<
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Dear all,
Thanks for the support.
Artist, this is day 3 of Taxotruck cycle one and I already feel some buttkicking going on around the areas of my mets.
Granna, we already ruled out ascites with the screening. My liver has grown, lymph nodes have grown and I have a bit of PE. Thank God, the suffocating phase is over, after the infusion.
Cive, haha
still hopeful, indeed. Or maybe the Cubans 
Steph, I agree about Xeloda, SERIOUS c-bugger fighter! Yet, each MO prefer different order of therapy, according to our specific conditions.. Xeloda still is my fave so far
Linda's MO and mine think parallel. I was to go on to Gemzar&Carboplatin, but my condition reqired Taxotere, the big brother.. once again.. right after Dx I had 8 cycles of it, after which things were under control, stable and could rest on milder chemo and AIs for the past 4,5 years. JFL, no two cents on Afinitor, but DO enjoy your holiday, sis!
Keetmom, fingers crossed!
Ben's Mom, welcome! Great to hear therapy's working
DS was just 6 at dx, now he's already a teenager, 12! Hang on, your toddler's got many more years with you. Definitely agree with you on relationship with MO is important. They've seen so much and in time build a theraupatic bond with each one of us, at least mine did. I was open to that and eager for doing what she said. Zarovka, as always you point at specific details to be considered for us all, thank you.
Photogirl, happy mom's day to you too!!
))))Robin, each drop of TM drop counts.. I figured liver mets resist the numbers in my case, yet as MO put it it's functioning is what counts more!
Oh well, the steroids had me up so early up again this morning. Guess will try to sleep a bit more.
Hugs all
Ebru
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Cathy, OMG! Glad that's over
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hugs ebru - i am watching out for the results from your treatment change.
>Z<
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Hi and thank you so much for the warm welcome!
I'm on niraparib but sadly Tesaro- the sponsor- stopped recruiting. I believe they are redesigning. There is a similar trial called Apollo. I am BrCa2 positive and can only say good things about this drug! If you cannot get on a trial, perhaps your MO can help you get this drug on compassionate grounds somehow. It is so frustrating when it comes to access.
Hugs and have a nice weekend xo
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Robin, Shetland -
I just spent a while going through all of bestbirds posts about Afinitor. I did not find references to actual research that indicates Afinitor, or mTor inhibitors, cause cancer to become more aggressive. There is always speculation that chemo, in general, drives cancer to mutate into more aggressive forms; however, I am convinced my recollection regarding Afinitor specifically came from a member comment on the bollero 2 trial, not a research article.
Overall survival statistics are hard to evaluate. The "control" group always goes on to do other treatments and so do people who progress on the trial drug. The treatments they choose after the trial are pretty random. Every time I look through the bolero trial OS results or really any OS results, I find them a little more meaningless.
I am still not an Afinitor fan, personally, but that is just a gut feeling for myself. I've watched you guys and how you make your decisions ... you are doing everything right.
The question is really how mTor inhibitors drive cancer mutations. I am definitely interested in any research on the topic.
>Z<
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Welcome Bens-mom! There is so much new stuff out there to keep us tooling along. So keep on being an awesome Mama to that wonderful baby!
Oh Cathy, dang it! I feel so bad for that sucky procedure you went through. After all of us talked up our own experience.....That sounds pretty scary and just plain yucky. I'm so sorry. I have to wonder why his procedure was so far off of most of our experiences? Like Z said, rest up eel and be glad it's time to get going on treatment. I'm so glad it's over for you.
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So I met with a new local MO who is great. I think I will keep her. I asked her to show me my CT scan and see how many tumors were there, size, etc. She brought it up on the screen and told me I have no focal lesions but that the cancer had infiltrated my liver. Has anyone else been told that? I begged my husband who is a Radiologist to take a peek so he did and said he was so surprised no lesions. He said in diagnosing liver cancer he has seen much worse and that maybe the Xeloda will kill the infiltration. He said he thought I would have so many small lesions and I don't. That may be why the second PET scan was inconclusive according to my Mo at Dana Farber. I'm going to ask my local MO to send it to my Doc at Dana Farber and get his take on it. Has anyone else been told this. I just wonder if a biopsy would be a good idea but none of my docs seem to think it is necessary right now. It scared me so of course I had to come home and rest from the stress.
Hope everyone is feeling ok. Hugs to all. Anita. "aka" PHOTOGIRL
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So I met with a new local MO who is great. I think I will keep her. I asked her to show me my CT scan and see how many tumors were there, size, etc. She brought it up on the screen and told me I have no focal lesions but that the cancer had infiltrated my liver. Has anyone else been told that? I begged my husband who is a Radiologist to take a peek so he did and said he was so surprised no lesions. He said in diagnosing liver cancer he has seen much worse and that maybe the Xeloda will kill the infiltration. He said he thought I would have so many small lesions and I don't. That may be why the second PET scan was inconclusive according to my Mo at Dana Farber. I'm going to ask my local MO to send it to my Doc at Dana Farber and get his take on it. Has anyone else been told this. I just wonder if a biopsy would be a good idea but none of my docs seem to think it is necessary right now. It scared me so of course I had to come home and rest from the stress.
Hope everyone is feeling ok. Hugs to all. Anita. "aka" PHOTOGIRL
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Hugs Photogirl - I am proud of you for looking at that scan and asking all those questions and pushing for answers and sending your reports around. No wonder you are stressed ... you stared that beast down. But pressing into the details and getting the diagnosis right is going to give you a major advantage in making the right treatment decision and, unfortunately, it is up to us to get our doctors attention to these things. Congrats on a good MO who will work with you on this... that's a keeper.
And definitely make DH work a little harder looking at the scans. I am sure it is terribly stressful for him, but diagnostic errors and subtleties are missed all the time My husband is a mathematician with a specialty in image processing. Among many things he write the algorithms that reconstruct scan data in to images that radiologists and others interpret. It's definitely not his favorite topic to discuss how the issues he understands influence my scan results ... but I push him. Usually in the car when he can't get away ....
I actually do not understand the difference infiltration and a lesion ... would you explain?
>Z<
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Oh Cathy, glad that biopsy adventure is over!
Ebru - Buttkicking already? Love it.
Anita - Having an MO you trust is sooo important, I'm glad you met another one for keepers.
Hmm, infiltration, focal, lesion... All reports are done in French here but this was an interesting wording that I will try to translate. My liver is "stuffed" with small mets as if they were talking about a turkey. Can't get more scientific than that... Taxol will begin on Monday, 15/5.
Welcome to all newbies.
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Wishing a Happy Mother's Day to all the moms on this wonderful thread.
JFL, I hope you can forget about Mr. C for 10 days and have a wonderful time in Europe.
Welcome to all the new ladies here. You will find an abundance of support and wisdom here. So sorry to hear of all the recent progression. Know that we pray for all of the women and caregivers on BCO every night.
Once again, I am lying here next to my sleeping Princess. It's been an exhausting week for KD. When she came home from the hospital Monday, she was carrying an extra 30 pounds of water weight.
Well, with some powerful diuretics and a strong laxative, she has dropped 22 lbs of water weight since Tuesday morning. 😳😳 Needless to say, her swollen feet, legs and abdomen are greatly improved.
The bad part is that she is back and forth to the bathroom every 1 1/2 hours or so around the clock. So, she is extremely sleep deprived, as I am somewhat. Thankfully, her mom and aunt are staying with us and they sort of take over during the daytime. I get the nighttime shift and try to nap when I can during the day.
We are blessed in that her mom is a retired oncology nurse, so that is a tremendous help. She has a great understanding of everything that is going on. Her aunt has assumed the role of her physical therapist. We make a pretty good team.
We see her MO Monday morning to see how her liver function is doing. Praying for good results.
Loving kindness to all,
Louis
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We're all praying with you Louis!!!!
Bab
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Me too Louis, joining my prayers.
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This is what happens, when I am home and I am checking in, the thread seems to be going slow, when i don't i can barely catch up.
Sorry I am not greeting all the newcomers with the attention you deserve. I am following you and will try to be there for you.
Cathy that was a disappointing experience, but hopefully they could figure out soon enough how to proceed.
LindaE so glad you are starting the process, fingers and toes crossed. Stuffed, that's a new one.
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 today.
Bens Mama so nice of you to share. It gives everyone a boost.
I really need a crash course on Parp inhibitors – M TOR inhibitors. I remember hearing these words a long time ago, but haven't heard in a while. So I forgot.
Who 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?
I 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.
Cure ious if you see this, i'd love your input.
KD keep up the good work. Nice to know you've got such great support. It's everything.
JFL good luck on your treatment.
Keetmom for you too.
And for the Mamas out there, hope you had a peaceful day.
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Linda, praying Taxol will kick butt on that "stuffing".
Photogirl, I'm curios of the difference between no focal lesions and infiltration too? Being left with more questions is cause for a lot of stress for sure.
KD's hubby, I'm so glad KD is home and on the mend! You are very blessed and deserving to have such great support. You need some R & R! Hope she is back to feeling very well soon!
Scans for me on Wednesday, thinking the worst and that we will be switching TX. Also my 60th birthday.......yippee.....what a way to celebrate. Then again, maybe I will have cause to celebrate. Hope springs eternal!
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artist- I have scans on Wednesday and Saturday this week too. I sympathize with you as my oncologist suspects it might be time fir me to move to a new treatment. I wish only the best fir you and hope that everything goes ok.
Thinking of the rest of you. I don't mention everyone by name but you are all always in my mind.
Mom- you and Dani are in my thoughts and I hope your meeting gives you some answers and a new path you and Dani are comfortable with.
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I'll be thinking of you then on Wednesday Leftfoot and sending positive brainwaves to you! My Onc suspects the same. Plus i've had to get of the Xgeva as I had a sudden dental problem I have to get fixed....
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Artist hoping you have great reasons for celebrating your 60th🎂🎂🎉🎉. No matter what happens you do need to celebrate. Every milestone counts big time now!!!
Left foot hoping for the best on Wednesday. When will you get the results?
I had a spine scan today. Not sure why. But the more info my mo has the better. Will get the results on Friday when I see her. till then I'm crazy busy every night after work. I'm actually more concerned about my liver met increases in size than anything else. Hoping for answers on Friday
Babs
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Artist you will rock! Good for you.
Leftfootforward thank you so much, meeting with RO tomorrow. MO decided it's not important to share her thoughts re- new treatment yet, she is living us in suspense. Just as well, we'll deal with RO for brain mets tomorrow, they must have talked.
Linda how did it go?
Babs could it be to find out where your pain was coming from?
Dani has some pain in the mid back, like someone punched her, she has numerous mets throughout the spine, but i spoke to the Radiologist that read the report and he said he thinks it's inflammation from the disease, another slap. WTH is that? We'll know tomorrow more.
Louis hanging on?
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Well, y'all know that I married a Princess, but let tell ya, she is one helluva tough Princess. My girl never ceases to amaze me.
I am being totally honest when I say that I had to mentally prepare myself for the possibility that her MO would tell us this morning that her liver could not withstand any further treatment. Not only was that not the case, he actually started her back on a reduced dose of Halaven this morning.
He was absolutely AMAZED at the amount of fluids that she lost in one week (~ 27 lbs), and at how much her lab numbers had improved. So, for now, we are back on track. Thank God for the opportunity to exhale in relief.
I too am saddened to hear the news of Carol. I am really hating cancer with a fury right now. 😡😡😡
I have a close friend (Julie) who is on the doorstep of hospice right now with pancreatic cancer. We used to text daily. Now, I have to communicate with her through her husband because she is too weak and fatigued to send a complete text. A brilliant young attorney and a young mother of two precious kids 7 and 4.
Only in a post on a cancer thread can you simultaneously be grateful and furious, huh? But, every one of you completely understands.
Time to pray for my Princess, my friend Julie, and all of you. 🙏🙏🙏
As KD's aunt writes in her prayer text to KD every night....
"Goodnight, sweet dreams, Angels are with you."
Louis
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Louis you gave me the chills.
Wonderful wonderful news.
Sorry for the emotional anguish.
Sleep with the angels.
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Louis - YES. that is what I wanted to hear.
Sweet dreams all, angels are with you.
>Z<
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Great news Louis. We needed this!
Babs
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Great news Louis. Your wife must be strong like you.
I didn't know Carol but this is always sad news as one of our BC sisters. RIP Carol.
When I was first diagnosed last August my tumor markers were 221. Ibrance started flaring them up but it failed me after 8 months and now the infiltration of my liver with no focal lesions but me into another drug Xeloda. I just saw my tumor markers from my MO and they are now over 2400. It just ruined my day. Has this happened to anyone else. I was hoping that after two weeks on Xeloda it is just a flair. This disease is just so scary😓 .
Hugs to all
Anita
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Louis, such great news you have! Absolutely thrilled to read you this morning!
Mommal - First Taxol went well. Everything was well organized at hospital, my sister came with me for moral support. Got my all favourite Decadron as part of pre-meds (ate everything in sight afterwords), Benadryl and Zantac. I didn't know that Zantac has some anti-allergen properties, we learn something every day. Got 2 rx for nausea if needed, but so far so good.
Anita - I know how disappointing it is to see those TMs creep up, but 2 weeks on Xeloda is a very short period of time to draw conclusions. But I get you, we want to see them going down and it plays with our nerves. Hang in there!
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Anita - classic flare. And no drugs works in 2 weeks. Go for a walk and eat really well today. Visualize the cancer dying and splitting open and spilling cancer antigens out into your blood stream. I am guessing that is what is going on.
>Z<
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As I just reported on the Ibrance thread, my recent CT scan showed no new liver spots and existing ones shrinking. I want to send encouragement to others as I had been really worried recently as I had some underliying discomfort/pain - which was causing me to worry that things were brewing. I am proof that this does not necessary mean progression. I am now imagining those pesky cancer cells having a dramatic demise!
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