How are people with liver mets doing?
Comments
-
Hi Husband11, yes I am brca2 positive
0 -
I wanted to share my birthday flowers with KD And Louis , & sons thinking of you all. Hugs of strength and peace ~M~
0 -
Beautiful flowers Micmel. Thanks for sharing with Louis and his family and us. Happy Birthday!
0 -
Micmei happy happy birthday! My wish for happy times with peace.
Cathy thanks for letting us know, I'll jump in there.
Buras my daughter was on it, although for a short time, it did not help her, but Onco was very excited about it. It was not a hard treatment.
Maria from what I hear it could be inflammation as Z says. You are lucky Onco wants to redo scans, sometimes they say they will wait.You need to do a lot of running around. Gosh they are so cute when they are two. Which PARP inhibitor were you on?
Waiting still for the Insurance to approve Xtandi, the Herceptin was started, Onco's office and Insurance are at this stupid game a whole week at Dani's expense. every time she checks with one or the other, they each said the other did not give the right info. It's a disgrace. We keep saying what do people do that don't articulate well what they need, or are too ill to keep up at this day in day out.
0 -
That kind of bureaucratic nonsense is so maddening, and when it makes someone in Dani's situation wait it is heartless and criminal. I spend hours every week on behalf of my whole family trying to get medical providers to get things done and done right for appointments, prescriptions, tests, etc. Call, fax, mail, email, go there and talk to someone, deliver the paperwork in person. Recorded phone menus and gatekeepers drive me crazy. Often I am the powerless go-between. I have been thinking about who I might appoint to do this job if I am not well enough. I have realized how fortunate I am in my cancer center, onc, and nurse. But even there I sometimes have to work on things.
0 -
Yes, Shetland, it's truly heartless, among thousands of reasons, is that for every person going through any sickness, but for you or for Dani that tries so damn hard to have a bit of normalcy in this craziness of scans, doctors appointments, when it's a constant any and every minute of "normal"life is such a relief, and these people don't allow that. She wants to speak herself sometimes, because she is capable and she wants to have some control, so she takes over sometimes and then bam this happens. This whole week, she was busy with this sh... pardon my French. As if dealing with having to have anew treatment once more is not enough. I honestly don't know how the World goes around with so much incompetence.
0 -
Yup, you said it, momallthetime.
0 -
The flowers are beautiful Micmel. I hope Louis and his family are ok. The grieving process is a hard road for everyone. I'm running on my second round of Xeloda. So far so good. We are need to keep fighting. I think of myself like this Lioness I took in Botswana, Africa last year. They live and survive day by day just like all of us! They are fierce and put up a strong fight everyday!! I can totally relate to this. Hope you are all fighting hard too.
Hugs to all, Anita
0 -
The flowers are beautiful Micmel. I hope Louis and his family are ok. The grieving process is a hard road for everyone. I'm running on my second round of Xeloda. So far so good. We are need to keep fighting. I think of myself like this Lioness I took in Botswana, Africa last year. They live and survive day by day just like all of us! They are fierce and put up a strong fight everyday!! I can totally relate to this. Hope you are all fighting hard too.
Hugs to all, Anita
0 -
Anita~ that is absolutely amazingly gorgeous. They are truly beautiful creatures. Just like women!!!! Hugs ~M~. I'm sharing more of my birthday flowers for Louis and sons and our lovely KD, we have them and all the Manchester victims in our hearts and prayers. Too many young people and families to suffer from such unnecessary violence. Prayers for all. ~M~
0 -
Mom, that is super frustrating regarding the red tape holding back the prescription. I have this issue every time I start a new drug. I take on the role of friendly, yet annoying patient. I keep calling each party involved daily or several times a day until someone clears the holdup (for me, this involves the doctor's office, the cancer center's third-party specialty pharmacy who administers precertifications / insurance approvals, the actual specialty pharmacy required to be used by my insurance company to fill the prescription and the insurance company itself).
It is not right we need to do this and it is quite time consuming but I believe I would have waited at least a week longer if I didn't push them. I look at it like a business strategy with the sole goal of getting my prescription as soon as possible and don't take their incompetence personally or try to understand/correct the problem of why they are so incompenetent - otherwise, I get way too worked up and none of the parties involved will ever admit wrongdoing/dropping the ball. I hope you can resolve this soon.
0 -
JFL your thinking is exactly the same as we. That's exactly what Dani did a whole day today, right fter she came back from Rads I see as one of the problems, is that Onco's office is not on the phone about her, all of the time, they call if they get just a message they won't try again, and then the game starts, they call back and NP is not available and back and forth, misinformation, miscommunication, the bottom line she was denied Xtandi, she just found out, and Onco has to appeal, but no one is making any effort till Tuesday. That means she is no particular treatment. She had Herceptin, but in itself I don't believe it has any effect on her.
At another doctor we have for instance, there is someone that all she does is approvals. But he is a private doctor. Here, it's a large Center, there is no incentive, they work their hours and that's it. I am really scared that things will get worse because of that.
How are you doing?
MicMel love what you wrote it's so true.
Anita thinking of the Lioness, but feeling more like the monkey at the end of the rope.
Take good care everyone.
0 -
Mom~ you're a wonderful strong woman. Dani is lucky to have such an advocate. You both are always in my prayers. Wishes that those freaking oncs and ins company's get their act together. I had something happen to me with them last week, it's so maddening. You are no monkey on a string. You're dealing with a serious issue the best you can, personally I think you're amazing. Gentle hugs ~M~
0 -
Mom, when I read your comment that nothing will be happening treatment wise until at least next Tuesday I immediately thought, Good give Dani a break. In the whole scheme of things, three or four days is minimal and sometimes it's nice to forget this horrible journey we're on and live without the constant thrum in our heads of meds, infusions, scans etc.
This is a good opportunity to forget it all and enjoy the holiday weekend.
So on that note, I hope you and Dani have a great weekend and can enjoy each other's company doing something out-of-the-box. You are a wonderful mother and you too deserves some down time
Amy
0 -
photogirl you are most welcome. We all have different experiences and sharing is great.
I also have been focusing on my kisneys.. okra!!!
Louis, I am sorry for your loss. I know your angel wife is in a better place now.
I am still very bloated on the belly.. yet this is just the first cycle of taxotruck. MO is very optimistic I will shrink down to normal size.
Btw My hair started shedding in the second week so got it shaved and colored red this time.. so am a redhead for the first time in my life😊
Hugs all
Ebr
0 -
Momallthetime, my apologies for not answering you! I'm on a med called niraparib which I pray pray pray I can be on for a lot longer. It's been 13 months and although I'm having some issues right now, I've had very few side effects. Was just FDA approved for brca 2 ovarian cancer in the US.
My little guy had soccer today...I can't explain the joy I felt watching him out there with all these 2 year olds. I wasn't even sure I'd see him be 2....nevermind running around on the field with him playing soccer
.....so grateful for these moments and memoriesHope you ladies are having a lovely weekend with lots of joyful moments!
0 -
Bensmama~Hearing about your little guy playing soccer and knowing how heavy your heart must be, brought a tear to my eye. I am so happy that you are able to see him playing that way. Cherish every second. Even when I wasn't diagnosed, the time flew by with my kids. I believe you will have many many more times like those. He needs you. You're his mama. You only get one mama in life and for that little guy, you are the stars and sky and moon. The sun sets for him to love his mama another day. I know it's hard and I know you're tired. But his little life would be a lot harder without you in it. Fight like crazy. Fight always. You're strong. You've proven it. Amazing women, amazing families, never give up no matter what. Some people aren't very religious, I am one of them. But I have been praying. My DH said to me this week. I am not going to spend my days scared. I have you now. Your scans were good. Let's live happy now. Because if you're not here. I will never be happy again. We have to figure out what makes us happy and live every second like it's our last. Love harder. Hug stronger. Smile longer, laugh louder, see deeper, fight like a woman! Hugs and you will see many more soccer games. ~M~
0 -
Ebru, so now you look like your picture!
0 -
thank you so much Micmel 💕
He is my constant reminder that miracles do happen as we actually weren't even trying anymore, and the mets were already growing in my body! Myhusband is so wonderfully sweet and supportive and says Ben is my diamond sparkling brighter and brighter in my heart day in and day out. We ALL have that diamond and strength we didn't even know we had.
WE can never ever just accept what our oncs tell us when we don't believe it's for our greatest good. I too am religious and I pray and when something doesn't feel right I somehow navigate through it and know God has got my back!
I'm so glad I joined this forum
Have already learnt so much.
Xo
Mari
0 -
Ha cive, I was thinking the same thing! yes ben's mama grab each day with all you've got for that little boy! Micmil, your DH sounds a lot like mine.
0 -
Micmei you write so well, right to the heart.
Oh Bens-mama thanks for the answer. It's never enough. So glad you are having a gr8 time!! D's girls need her so much. they have such a tight relationship. She never told them a/t but we all know that they sense something. And the days that she is not good, they glue to her like pets. It's crazy. They are 8 and 10.
Amy it's 3 weeks - not 3 days. I am beside myself. I think they were careless and uncaring.
Ebru red it is.
(Below repeat from bone thread )
Finally Friday late pm. Onco sends an email, that Enzalutamide is denied and it has to go through appeal. It means doc was suppose to call and do her thing.After Dani called all day back and forth. Onco's office said they left a message with Insurance, when Insurance called back they said they could not get hold of doc.Whatever. The thing is she's off treatment comes the 31st 3 freaking weeks. I am so nervous, cannot even begin to explain.
I could send a whole expletive email, it was in my head a whole night.
Well, short of it, i am thinking if i should send an email, telling her of our apprehension, And something to the effect that we really were hoping the office would have taken care of it. Yes, Insurance could be difficult, but the way we see it, onco's office just leaving a message and making a note to follow up, i think that's the real problem. they call, do something else for 3 hours, then when we call them they say oh yeah, we'll try again, and they allowed this to get to Friday pm, when they close!! Friday is almost not a day there, i learned they only know of 4 days(making fun, but it's like that), and with this long weekend, don't they have a responsibility in making sure their ppl have a supposedly life saving treatment. I just know that her liver mets expanded, and there is progression, so how could they in good faith go to their boats....I am really very mad. And very anxious!!!
I think i'll write something, not harsh, but let Onci have it an email, they don't like that, because i think their email get checked by big brother from time to time, and it won't look good for her.
If anyone wants to draft something, by all means. I just pray to God this thing does not go out of whack.
0 -
hugs mom. a treatment break is scary but also a break for dani. these drugs are hard. praying there is a silver lining here.
>Z<
0 -
I have good news and bad news. Good news: No Faslodex shots for me today. Bad news: No Faslodex shots for me today. My very trustworthy TMs went up again, so after four months of Faslodex + Afinitor, I am moving to Xeloda. I'm so afraid of hand-foot syndrome! How can I be a dancer with that? But onc says we can adjust the schedule or dose if necessary. I asked about Gemzar because it doesn't have that SE, but she explained why Xeloda would be more likely to work well for me. One reason is that with a slowish cancer (as shown by the rate of TM increase), it is good to have daily doses rather than weekly, so at some point you take the drug at the right place in the cell cycle. It sounds like I'll be on it within a week. She wants to know that the systemic treatment is working, then we can talk more about radioembolization. She is looking into what kind of biopsy will be best, so we can get tumor genes assayed. If liquid, which one looks at the relevant ILC genes? Or is a conventional biopsy possible? She says the cancer must be functionally hormone-receptor negative. I believe we tried the best hormonal plus targeted therapy combo for me, so I know I do need to move to chemo. But wow, I never thought it would be so soon. I'm a lot less stressed than I would be without my BCO pals. And I do love my onc. She has compassion as well as a good mind. She can handle both my tears and my "advanced" questions.
0 -
Well darn, Shetlandpony! I'm sure you will find some good tips for the hand/foot syndrome on the Xeloda thread. Even though your TMs are very reliable, do you feel comfortable switching tx without imaging? What if it's a tumor flare? I sure don't have an MD beside my name though! I would have preferred Xeloda to Taxol but MO felt there was an urgency for the big guns and before taking Xeloda, she'd want a test done to see if I would respond to a 5 FU chemo such as Xeloda. I think it's a blood test if I remember correctly and I don't know how long this testing takes. I had never heard of this until very recently. Anyway, lots of gals have very good results with Xeloda and I wish you the very best on it.
0 -
Shetland, there are a lot of things you can do to deal with HFS. There are supplements you can take and lots of creams. Some people have had great success with Xeloda and have even been on it for years.
I recommend reading some of the previous pages on the Stage 4 Xeloda thread. For me, I had more problems with digestive issues, but was able to cope with HFS once the dosage and scheduling were adjusted. Some MO's believe in titrating up slowly to see how you handle it. In my live support group, one of the women doesn't even have HFS. Everyone is different. Some people just sail right thru.
When I initially started X, I had mets to my liver, pancreas, adrenals, kidneys, outer bladder, abdominal wall, several areas on spine, pelvis, right hip, several ribs, & muscles adjacent to spine. Last PET showed stability to all organ mets, and only active uptake in lumbar spine, right muscle next to spine, hip and just one new area of progression in my right posterior rib cage. So yes, there is some progression, but compared to where I WAS before X, I think it's truly remarkable.
The ladies on the X thread are wonderful, knowledgeable and supportive. I'm hoping for several more years, and I hope the same for all of us.
0 -
Shetland, I am glad to hear your update. I hear your reluctance to begin chemo so soon but as one with only chemo as an option, I do feel that what matters most is finding the treatment that gives some longevity with minimal SEs. This I pray for you and Xeloda. May you be a match made in heaven.
As for me, I continue to cling to carbo. Got "essentially" stable scan results last week. I'm choosing not give the added qualifier any thought but it is the first time my insignificant changes (a few mms) moved in the wrong direction. Let's just call that a fluke until we have to call it something else.
0 -
Shetland -
I think you've been effectively hormone receptor negative for a while ... and considering that fact, your cancer is pretty slow moving. The good news is that Xeloda will actually drive the cancer back. Some people don't have much by way of side effects on Xeloda. My sense just reading Xeloda threads is that the dose can be much lower than previously thought and still be effective. The lower dose reduces or even eliminates the side effects. Press on the dosing issue if the side effects do present. I've seen people ramp up on Xeloda rather than dive into a high dose ... and stop when the side effects start kicking in.
I'll be watching your posts to hear about your dancing ... I'd like to know that you are dancing.
I hate that you are in transition, but somewhat relieved as I believe we both knew hormonals weren't working. You need to get into an effective treatment and stop transitioning every few months. You could finally get a long run ...
Watching this closely ...
>Z<
0 -
shetland- sorry you had to change treatmentvso soon. Xeloda has been my ticket to a normal life. As people have said you can change dosage and schedule in order to help eliminate or minimize SE.
best wishe
0 -
Shetland, so sorry to hear about the move on meds, it is very stressful!! I spent 16 months on Ibrance and then sailed through a trial in 2 months, had to be pulled off that, and finally settled into Xeloda. I am in the middle of my 3rd cycle and have had relatively few side effects. I am on 3500 a day, 3 in the am and 4 in the pm. I hope this is the golden goose for all of us on this. Hugs to you, Alissa
0 -
Good luck Shetland! I'm sorry to hear bout the changes- it can be so overwhelming but just remember how strong you are and that when we deal with this one day at a time it makes it all a wee bit easier. I was terrified before I started xeloda but my only side effect was kinda gut rot which I took rabeprazole for and nausea at the beginning. I took a metachlopramide anti nausea pill and ithelped big time.
I will have a CT on the 13to see what is hopefully inflammation in my liver. Feeling very calm though....thank you ladies for all being so open.
Mari
0
