How are people with liver mets doing?
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Ways to get my mind off cancer? Gardening, going to the beach, looking at old photos, sewing, long walks
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For me working is my salvation. And seeing shows, movies and just getting out and about
Babs
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Gardening, reading middle grade and YA books, and dogs!
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babs, I feel like working is my salvation too. But then when the weekend is gone so quickly I yearn for more time to do my art, music ect. Double edge sword. Luckily I have the summers off for 8 weeks to cram it all in!
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I just spent the whole weekend at the state PTA convention. That is about as far away from cancer as I can get. Had a great weekend, earned 4 awards for my school PTA, learned a lot, and met a lot of new people. None of them knew I have cancer. It was wonderful
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Leftfootforward reminded me that hat privacy is an important piece of dealing with cancer. I don't think it is a good idea to tell anyone by your closest friends and family, otherwise you have deal with everyone else's shock, panic trauma all day long. It's not easy to really support someone with cancer long term, day after day. Only the people closest to you are going to be helpful.
Be careful who you tell you have cancer, otherwise you have to live with it all day long wherever you go.
>Z<
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Hi,
I have been on Navelbine for five months. Recently had cat scans that showed progression in my liver. I already had liver mets but only to enlarge. My oncol. wants me to take Gemzar. Has Gemzar caused hair loss for any of you girls when taken alone?
What side effects have you experienced on Gemzar?
Thanks
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blondie1,
sorry that we are in the same boat. I had a good run 2002 to 2016 being cancer free with annual check ups then mets in bone, brain, liver (70% involved, over 20 tumors - one with necrosis), lungs and lymph!
Cancer had mutated from ER/PR positive, which we were treating, to triple negative- (apparently it happens in 30% of cases)
I have been on chemo (first eribulin which did not work then xeloda which is working miracles.)
I am still working full time, don't know till when. Keeping my spirits up but aware that the prognosis is dismal.
I will live life to fullest. I like my work, love my husband (we married happily oblivious of recurrence then 3 weeks later bam!), am surrounded with friends, I am going on trips as much as I can so while I am not happy to check out early I am at a good place in my life and think, no better time. I will be 53 soon. Yes, I will get ripped off by a couple of decades on my life expectancy. I like to think that will give someone else the extra years to even out the statistics.
Hope you can manage true happiness in this period.
Best wishes!
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KD just hoping to hear good news from you. I pm'd you, thanks so much for checking in.
Stefajoy wow so much anxiety. At least you know what the situation is now. Do you have a definitive plan?
Shetland stable is the new great. That's what I have learned. Tough, but true. You have been through a lot, it's nice to hear some calming news.
Letmywifelive thanks for your pm.
Sandi cheerleaders are always needed.
Grannax what about a sono? Could you get that done so it's not consider like a major scan, and they could see ascites with a US.
Scwilly I know the same as what Zar mentioned, it hurts when it gets really bad. But this whole thing goes prob with the story of losing one's limb and still feeling it. You are concerned and rightfully so.
Naturegirl2 aghh so sorry. You certainly had a longer run with Navelbine than Dani did. Gemzar is suppose to be very good also but it's quite tough,but she was taking it while on Afinitor, even after she stopped Afinitor she had hair loss. But it's powerfull stuff.
Leftfootforw good for you.
MJH, Artist, Kaayborg waving to all. I for sure let someone slip by, so sorry If I did.
Lynne it's a talent to be able to look at things this way. But it's the only way, hope is a powerful elixit.
Zar are you back from the adventure? How did it go? Thanks for all the insights, all very helpful. You are like my private lioness.
Babs thanks for checking in on behalf of the crew. Hope you are coming along.Great pictures of your lovely daughter, proud mama.
I feel so bad that I got you guys worried. I don't like to turn off from this group. I find comfort in these pages. You guys are amazing. But I was just going and going. And by the time I got to the computer to write, I was spent. It's that simple. Things are under control now, Dani is chugging along, not bad at all, she has fatigue and nose bleeds, which was a concern, but it was decided that it is what it is. She starts her 3rd cycle this week, it's 2 weeks and then it's scans, they might do it a bit earlier if the #s are still messed up, part of me wants her to go the full throttle and part wants to be able to catch before things get out of control.
My Uncle started treatment already. He actually is making use of a new Immunotherapy for his cancer with few supposedly SE's. It's just the things of life. He has a folly. This is a very proud charming man and a charmer at his age, so it's not sitting well with him. But we finally decided on the different doctors and care he needs, so it's a relief.
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Momall, It is good to hear from you. We do worry about you, but it is always great to hear that you are okay. Take care of yourself.
Lynne
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Naturegirl, no hair loss for me on gemzar/carboplatin.
FCVAGG, be sure to follow the triple negative thread below. Not as active as this one but lots of good info unique to us and more great, supportive ladies. So glad Xeloda is working well for you. May the great results go on and on.
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Hey MomATT - Good to have you back.
NatureGirl - Gemzar is a reasonable thing to try now. It sounds like hair loss is minimal. Many tolerate it well. I would go ahead and just do that. However, I am concerned that you are burning through treatments and they are not controlling the cancer as I would like. I'd like to see you get a long run on something. I would prepare now for the next step after Gemzar. Here are some things to consider:
Immunotherapy trials. There is a woman who just asked about immunotherapy options for her mom. Here is the thread on immunotherapy options. IMO, she needs to do some chemo first because Immunotherapy works better on cancer that has been treated with a couple lines of chemo ... the cells are less like normal cells and more "visible" to the immune system. However, after a bit of Gemzar, it could be a good time to try immunotherapy. Cure-ious and I gave her some immunotherapy trial options that you might want to start investigating. MO's are lukewarm about immunotherapy and MBC, and some immunotherapy works best on TNBC but we are seeing results in ERPR+ cancer. I am definitely considering it.
Chemo Sensitivity Testing. Your cancer seem tricky to treat, but there is a better way to choose what chemo will work then the educated guess of an MO. Dr. Weisenthal and Dr. Nagourney are two doctors that take you actual cancer cells and test how well various treatment protocols work on them. What they do is different than genetic testing or even standard chemo sensitivity testing. They don't try to grow the cells, which doesn't actually work. They need quite a chunk of tumor to do this. However, I personally will not do any traditional chemo without having this test done to guide the choice of chemo. I discuss this a bit in the thread on immunotherapy options.
Low Dose Metronomic Chemo. It's becoming clear from many studies that chemo works differently, and sometimes better and with fewer side effects, if you do low doses for long periods. It's called Low Dose Metronomic Chemo. Dr. Chue who leads the charge on this research is in Seattle, but if you PM me I can try to help you find one near you.
Chemo Bound with Antibodies. Watch how Dani (MomATT's) daughter does closely. She is in a trial where she gets chemo that is bonded with an antibody that targets receptors normally found only on cancer cells. This turns traditional chemo into a targeted therapy... you get a high dose to the cancer and almost nothing to other cells. Except for a nose bleed, Dani seems to tolerate it well. I am on the edge of my seat to hear about her scans. I am convinced that binding chemo with anti-bodies will work, I am not 100% sure they have it totally figured out in this drug (IMMU-132). We'll see from the results of this trial. It's called Phase I/II Study of IMMU-132 in Patients With Epithelial Cancers.
Local Treatment of Liver Mets. If the mets that are of most concern are liver mets, there are a number of people doing local treatment of liver mets with either TACE or Y-90. It's a local treatment, but seems to hold things at bay as well as any line of systemic therapy. Basically you inject little pellets of either radiation or chemo into the liver in a way that selectively targets the tumors. The liver inevitably gets beat up a bit, but most people recover well because the liver regenerates like the tail of a lizard ... remarkable organ. It's becoming recognized as a solid line of treatment in certain cases. Medical oncologists are generally not informed or enthusiastic about the approach, so you need to get to a specialist who does only this procedure to evaluate your case. Grannax is a member of BCO who having it done right now. She had one lobe done a couple weeks ago ... schedule to do another in a few weeks. We're watching her progress and discussing this treatment option on this thread.
PM if you choose to pull the string on any of these ideas and want some more discussion ...
Sorry for writing a book, but Claire is very concerned about you. After we exchanged a few choice epithets about this damn disease, she asked me to think through what options you might have.
I do believe you are getting to the point where you need at least a second opinion oncologists, if not your primary oncologist at an NCI designated center. If you are not at one, you need to be. After a couple lines of chemo, you're off the road map and you need a team of research doctors monitoring you case.
>Z<
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FCVAGG,
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HOME SWEET HOME.
There's no place like home, right.
KD got surprised this morning when the attending oncologist walked in and asked, "Are you ready to go home?" 😳😳 That really woke her up. LOL We surely didn't see that coming. None of us.
So she is now resting comfortably in her own recliner, and I have now shifted into full-time home health nurse mode. She is still extremely weak, but we can arrange some P.T. to help her get stronger. This ordeal took a lot out of her. It's going to take quite awhile to recover her strength.
But, recover she must by God, because just 2 weeks ago we booked a one week trip to Disney in Orlando, Florida. We are leaving the afternoon the boys get out of school on May 23rd. My sister-in-law, a real Disney pro, is going with us to help out for when KD needs her rest. We got trip insurance, but we are praying we won't need it. Looking to make some "magical" memories for us all.
Ok, gotta go check on my Princess ..... er, patient. 😃
Louis
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Louis - I am so glad to hear you are in your home. The Princess will recover much more quickly in her own beds with her kids around. The May 23rd goal sounds a bit aggressive for a trip to disneyland, based on my last experience at the park. There may be some compromise ... she can sit out some of the activities at the pool while you and the kids and the SIL take on the park.
>Z<
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Louis so happy to hear that KD is home !!!!!! I'm sure being home will help her recover faster!
Bab
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Louis, I am so happy to hear this great news! I am also very excited for your family trip and hope you can travel on schedule. I have a friend who's husband is wheelchair bound and Disney is their yearly vacation spot b/c they are so extremely accommodating. Be sure to take a doctor's note along and talk to someone in guest relations about your family's situation. You may be surprised at what they can do to ensure your vacation is magical. At minimum they should be able to hook you up with extra fast passes to do more in a shorter day. Don't hesitate to ask for help. Your family deserves it!
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Louis, "there's no place like home"! Yay! So happy for you two!
Cheers! MJH
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Hi, I'm back. Thanks all for contributing your many great ideas for not thinking about cancer! I notice several involve the arts: creating arts and crafts, music, literature, movies and shows, comedy. Kids and animals were mentioned. The outdoors with nature, gardening, and walking. Also photos. And working or volunteering.
Louis, it's great that KD got sprung from the hospital. So you could reschedule your trip, but I would probably be inclined to say we are going, by golly, and adapt in whatever ways are necessary. Kaayborg's idea about asking the park for some accommodations is a very good one.
So after three months on my new drugs, my TMs are still going up. It could be tumor flare, but I think my onc and I both suspect it is not. (I have very accurate TMs.) She is willing to wait one more month, and if the TMs go up again, we will pursue liver radioembolization. I am asking for a biopsy, conventional or liquid, and tumor genomic testing. If we can do conventional, we can check ER, PR, and Her2. What I don't know is whether I need a second opinion now. I mean, do I get one every time we have to make a treatment decision? (I am at an NCCN center.)
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Louis that's great news! 3 weeks of intense rest and tender loving care may just be enough time for KD to motor through that vacation. If anything she can ride Pirates over and over, choose the slow relaxing rides and features. And yes kaayborg had a great suggestion!
Mom you are so sweet trying to catch up and mention us all! We get worried when we don't hear but are so happy both Dani and your Uncle are situated well. I hope you take this "break" to pamper yourself a bit, you need and deserve it.
leftfoot, I'm so glad you got away and could live a weekend not thinking about cancer for awhile. It is such a glorious feeling and reminds me of how much I took for granted before BC. i so agree with Z now that keeping cancer private is a very prudent approach. Wish I had been more judicious but the necessity to tell a few key people in a small town mushroomed in no time. I think I thought I would immediately look like a "cancer patient" anyway so did not think it through. My last scan in Feb my Tm's had gone up but scans were fine. They have continued to go up this month and just have that "scanxiety" feeling.....I think you only have a second if you feel uneasy with Onc's decision or they want a 2nd for their own comfort level.
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Momall, I understand being too tired to post. Let's hope for things to be calmer now so you can catch your breath and Dani can enjoy normal good times with her family.
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Hello Ladies,
I have been following your posts but haven't had much time to write. It is official now, I have joined you in the liver met group. I had gone to Dana Farber to confirm, and my MO and his radiologist felt that my recent PET scan was inconclusive and recommended that I go back and have a CT with contrast. I have felt like this is just the end and then I read what you Ladies write and gives me hope! They put me on Zoleda 1500mgs twice a day and I'm beginning to feel human again. Has anyone taken this drug? I'm not sure when the symptoms start but so far so good. I'm bad with names, but thanks for all of your knowledge, I guess we just keep moving on and fighting. So yesterday after one week on this medicine most of my liver enzymes are higher than they ever have been. My husband sent the to Dana Farber to review and we will see what they feel is causing this. I'll keep you posted.
Hugs to all and I hope you are feeling somewhat ok.
Anita
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Not the end Photogirl, but certainly the beginning of a lot of hassle.
Welcome.
>Z<
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Photogirl -
After 1 week of Xeloda, my wife's Alkaline Phosphatate went up to 206 from 114 and Bilirubin went to 0.5 from 0.3. But it all normalized after one more cycle. That scared us too but hopefully its all drug reaction as well in your case.
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Louis - fantastic news. Very happy that KD is finally home and recovering.
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As I said in an earlier post, "A lot can change in 48 hours."
KD woke up feeling ok this morning. She walked from her bed to her recliner in the den "unassisted", which was an improvement from the day before.
A couple of hours later, she tried to walk again but her legs were not steady enough to hold her up. We checked her temp and it was up to 102.
We rushed her to the MO's office, they checked her out and re-admitted her immediately. Dehydration and Fever. Possible infection somewhere.
Unfortunately our regular MO is out of town at a conference. The attending MO pulled me aside and gave me "the talk". First he asked if she had a DNR. Then he asked if there was any family members or friends that need to see her.
He thinks her liver is failing with all the advanced disease in it. I'm not sure what to think. She perked up quite a bit once they got some fluids in her.
Once again, I find myself sitting here watching my Princess sleep, putting her in God's hands. Although, at the same time, I have requested that another MO take over her case until her regular MO returns. I just don't have any faith in the one who saw her today.
I can't believe that this could possibly be happening. Just a few weeks ago we were walking around the neighborhood enjoying all the new growth everywhere. This doesn't seem real.
Would appreciate all the prayers we can get.
Louis
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Louis- sending healing thoughts and energy in spades.
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Oh Louis sweetie, i am full of chills! What kind of test did this braniac make that he got the results so fast to know it's the liver failing? What if you call the answering service from doc explain emergency situation and request YOUR MO calls you back! and then call again and again. What about the PA or NP that works with your MO, maybe they would be more helpful and you say you want your MO to tell you what's next.
It's def ok and a good idea to ask someone else sees her. Who is seeing her a Hospitalist? Are they Cancer experienced? Or general? Ask for the attending!! NOT just resident who floats the floor. ask for the BT's results, maybe get a Primary doc you know to help you. YOU got to have a handle on the status and know what's up. And do not leave her alone at all.All kinds of crazies come in for tests or blood work that it's not needed or ordered by the right people.
She's got an infection and they have to find the cause of it, and they will.
It seems they sent her home with unfinished business.
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I am so upset for KD.
Anita go to the Xeloda thread, there is much good info there, so you could know how to get ready for the meds, the best time to take it and all SE's. At least they didn't waste anytime waiting till they could see better on the Pet. Good luck.
Shetland, thanks. You know it's the 60million $ question? I've gone to 2nd opinions, and because there was a lot of history we had to tell them about the other doctors, places. So believe it or not, these very high up Oncologists, in very high up Cancer Centers in NY, said to us, your Onco is very good stay the course. I was so mad? I don't believe the question i had posed to them was IF the doc was good. WE wanted to know if they have any other brilliant ideas, but NO they have this wall, I call it the white wall of protecting each other. Such a disappointment. I always have one foot out the door, if I feel in my gut, if they slow down ( like the prior doc), it's a tough call. But once in a while, would not hurt to see what another doc might suggest, if you could find an honest one.
Artist thank you. I know you must have gone through what high school kids go through, with all the talk. Well now you are free!
Prayers and prayers KD and for your family
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Louis - I am praying it is dehydration, which is really serious but treatable. I don't like the oncologist on call, for sure. Seems like one of those MO's that write off advanced cancer patients when they walk in the door. If it's an infection, treat it. If it is dehydration, give her fluids. Like you don't already know she has a serious disease .. what is the purpose of the The Talk, I do not know.
Praying for KD tonight. Praying for strength for you.
>Z<
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