How are people with liver mets doing?
Comments
-
Hi Daniel86. Thanks for the comment. Blastic and sclerotic are the same thing. The radiologists here only refer to them as sclerotic mets in my scan reports.
0 -
Tricia- great news! Also thank you for sharing the info on your filgrastim. I have taken 4 so far 2 for last treatment and 2 now. They are in pre-filled syringes. Kept in refrigerator and I just stick myself in the upper thigh. I am having blood work tomorrow and monday and then next friday. I have read that you don´t want to over use this neutrophil growth factor, because the cancer cells can also use it to their advantage. so less is more. They say 2 CBC weekly when on these shots and only booost to lowest normal range which would be 4,000. Last time after2 shots I went up to 26,000 but came down 5,000 / day. so it should be used in week 2 after chemo not right before. Funny doctor said nothing about this. I have alot of time on my hands so I read the small print.
Also they did not mention the Clarityn- just ibuprofen or tylenol. I don´t want to take neither because of my poor liver function. I hate when I´m not told the right info.
I appreciate all of you. Good luck tomorrow Granna X on your results. Somehow I thought you were good after your Y90. Can something go wrong. after it? when and why did you have it? How long have you had liver mets?
Hugs,
Raven
0 -
Tricia, praising the Lord with you! So happy for your good news xx
0 -
Hi all
Just wanted to give u an update. Back in hospital now with extensive small brain mets and a bleed in my brain. This has been crazy. They’re running tests and then will make a recommendation on a course of action. I’m seeing my progression is coming faster and faster which is disconcerting to say the least!
Babs
0 -
Babs, Thank you for taking the time to give us an update. I am sorry you are having this setback. You certainly deserve a break. Ihope that your medical team determines the best course of action soon. I am lifting you up in prayer.
Hugs and prayers from, Lynne
0 -
Babs, thank you for sharing. I hope you get some good news. Hugs!
0 -
Babs, thinking of you and praying your team gets you a plan quickly. It’s hell to wait on doctors to make decisions! Rest while you are in there. Hugs!!
0 -
Oh Babs, I am so sorry you are going through this. I hope you are insisting they fluff your pillows and do all the things to make you more comfortable! Wish we could sneak in and bring you some nice hot tea. Or single malt scotch straight up, your pick. I just said a prayer for you and will again. Let yourself feel all our prayers and love coming your way, friend.
0 -
Praying for you Babs.
Rest and keep us informed.
0 -
hi Babs,
So sorry to read about your setback. My thoughts and prayers are with you. Much love. Mina
0 -
Babs,
Hugging you from a distance. I never know what to say at times like this, except that you are a strong, fierce human, and that cancer sucks.
Jennifer
0 -
Babs, so sorry to hear of this, but much appreciate your sharing your news. I loved your last photo with your beautiful family. Will keep you in my prayers. Sounds like you have a great team working for your best care
0 -
babs: sorry you are in the hospital and your news. Praying for a plan to take care of your brain mets and bleed. Prayers and hugs your way.
0 -
Babs as a fellow y90 lady, you will understand my disappointment when I got the news today about progression. The worst part is that it's my liver. Nothing showed up in PET three months ago, now there's a new tumor in my liver. It's 5.1 uptake and two cm in size.
Y90 worked for over a year, I was getting confident that it would last another year. She is referring me to him to see if this one can be helped by y90. But it's very near the other ones, if it's one of the ones he's already done, it can't be done again.
There might be other local procedures he can do.
She wants me to take Afinitor/aromison. I'm not real confident in those two drugs but I'll give it a try.
I know you have bigger problems to deal with. I'm sure it must be so frustrating to find out about the brain mets as well as progression in the liver. 😢💞
0 -
Oh no Grannax. I’m so sorry to hear of your progression! I thought and hoped you would be good for a while with the y90. Maybe they can use gamma knife to zap them? Hugs!!
0 -
Grannax i'm so surprised and upset to read your news....Afinitor is a weird TX, some people have greatly benefited from it and have stayed on it for years. I was not as lucky and my MO said that if X fails he would want me to go back on it because of the AKT mutation.
If you don't have to be on the maximum dose the SE are negligible.
I send you a warm embrace....I am so terribly saddened.
0 -
hugs Grannex.
I am sorry to hear your news. I am hopeful that as it is only 1 tumor they might be able to take care of it either through more y90, ablation, or surgical resection.
In my thoughts as you find your new treatment plan.
0 -
Grannax. So sorry to hear your news. This disease sucks
Just got out of the hospital. The MRI showed extensive brain mets and spine mets. They’re putting a plan in place which we’ll duscuss on Tuesday. Not a great prognosis. I know my family doesn’t want to hear it but I feel like my time on this earth is limited so I want to make sure I have QOL while I’m still here. They told me I’ll need to stop working. Ugh! My work keeps me focused on other things which is good. It will be very hard to give it up
Bab
0 -
Babs, I’m so sorry t hear of your news. You and that beautiful family of yours is always on my heart. Sending you very good wish for QOL and time.
0 -
Grannax2, I'm so sorry you are dealing with progression, too. Seems like a lot of us have gotten lousy news this month.
I got 18 months out of Afinitor & Aromasin several years ago. It wasn't a cake walk--none of these treatments are-- but then again it wasn't the worst of the lot, either. It's doable. You never know, it might keep the cow in the barn for a while. Worth a try.
0 -
Dear Grannax2, I am so sorry to hear your news about your progression. The tide turns so quickly and even though we are prepared for it to turn...we are not. I hope that you get some encouragement re more local treatment. I was supposed to have started on Afinitor/Aromasin in July, but even with financial aid, I wasn't able to swing Afinitor, so my MO put me on Faslodex, instead. I had already bought the Aromasin and expensive steroid mouthwash, so that was money down the drain.
Babs, I'm sorry that you are facing what you are facing and wish you and your family peace and comfort.
0 -
Dear,
Babs- So sorry to hear of your recents mets to brain, my heart cries for you. I will keep you in my thoughts and send you warm thought with hope of meds that will take care of this and stablize you.
GrannaX- I am so sorry about your progressioni n the liver, despite the y90.Will you be starting on a new chemo regime or is that out? How long have you had the liver mets? My liver is pretty bad, large 5.6 cm tumor and lots of small ones...the radiologist said I wasn´t a candidate for Y-90. So i´m in a pretty shitty situation too. constate this or that. I absolutely hate this F$%&ing BC. I have been on house arrest all weekend WBC 0.9 and that was after 2 shots of Zarzio. They want me to take 5 total new blood work monday. I am a sitting duck. My friend died at 50 of ovarian cancer from infection they couldn´t control. This is unbeleivable, better tojust get a cardiac arrest and be done with it. This is such emotional and physical torture on oneself and family. And such good people who get this nasty disease. sorry got a bit pissed. Will you go on the trips this month?
There are no words......................
Hugs and tears and warm thought with hope to all of us.
Raven
0 -
Yes, to what all of you said. Right now, I hate my liver!!!! I'm very emotional for me and also as I read your circumstances. Breaks my heart.
Yes, I get to go on my trips. Nothing much can happen right away anyway. I have to wait on I R appointment/ opinion etc. I have to wait on Afinitor approval, etc. Katysmith that's so horrible that you cannot get funding for Afinitor. I may be in the same category as you are. OMG why does it have to be so hard?
Lulubee Eighteen months?!?! That's very encouraging for me, I've never heard of anyone getting that long on AA.
Raven I've had liver mets since my DX, December 2016. Y90's in April and May 2017 worked for over a year. They can still see the other mets ( about eight) but they are not active. This new, active one is much smaller than yours. Mine is only 2cm and 5.1 uptake.
Babs QOL is why I am going on my trips. I get it. I'm spending time with some of my oldest friends next week, many of whom I haven't seen in years. Then I will be with my DD and DSIL for a whole week. I think you are right to focus on QOL, whatever that means for YOU. Things can change so darn fast. 😢
Miomix, leftfootforward Gracie I appreciate your words and empathy more than you know. I'm going to need lots of words of wisdom and experience from all of you to get through this.💞
0 -
Grannax, have you already had IV chemo, like adriamycin and cytoxan to get your liver mets killed quickly?
0 -
sandibeach yes I had FAC way back in 1992! Then Taxotere in 2001. When Abraxane in 2010. My doc talked some about using IV chemotherapy at some point. I think the red devil is the only one that I can't ever have again, I've had my lifetime maximum.
But, no she did not mention doing chemo short term before doing oral meds. Her strong option is to do oral choices first. Personally, I'm not afraid of doing IV. I've done that and done very well on it. It seems like docs are so so reluctant to do IV. It's like a last resort. I would be willing to what you suggested.
If I don't get good news from my I R there are several choices I'm going to ask her about and that will be my first question. By then Afnitor will be approved or not so that scenario will be interesting. Have you heard of another drug that could be used with cytoxin instead of A?
,I'll certainly be gathering information and making my list of questions. I appreciate any suggestions.💞
0 -
Hmmm. I can't answer that, but Bestbird's Guide could help..? Do you have that link? I recently emailed her for the updated version. I think she prefers email requests.
You will get this figured out. I will be interested to hear what your MO tells you when the two of you meet.
0 -
Babs, Grannax, I'm really sadden to hear about both of your progressions. I've also been treated with Y90 and currently on a break from abemaciclib. I, too am awaiting a plan, it's difficult to try and live a normal life with BC mets.
Raven, Thinking of you as well...
0 -
Max otto Did you have another progression? Yes, it is hard. It seems like once it happens it's just a rollover coaster ride of changing TX or checking clinical trials. Is your y90 still working? I hope it is.💞
0 -
Hi all,
I am in in real situation...wbc 0.9 Anc 0.2 those were my last number from last friday. I have had 5 shots of filgrastim or Zarzario shots and new blood work tomorrow. I have nasal congetion basically runny nose. My doctor wants me to call if my temp goes over 101.3 so I can be put on antibiotic. My temp went up to 100.9 but has come down without any tylenol or advil to 99.6 I also have low blood pressure 99/68 pulse 104. normal for me is 117/78 p. 80, I have spent the day in bed. expect for bathroom and dinner.
When do you call the onc. and go on antibiotics? during chemo. This is day 11 post chemo. Also can I go the hospital for blood work without mask?
Raven
0 -
Raven -- I would follow the dr's information regarding calling for antibiotic unless your symptoms get worse. If they do get worse or if you are really concerned then call, they could maybe put you on flonase or something like that as well. If you do go to hospital for blood work or anything else, ask for a mask from the first person you see or even send someone in for a mask before you go in if you don't have any. Also make sure to tell them first thing that you are very neutropenic and on chemo. They will get you away from the general population as quickly as possible if they can.
0
