How are people with liver mets doing?
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How are you doing? I've just joined in - yes letrosole eventually failed me too but don't give up. Since I had Adramycin, taxol and cytoxin, the BIG 3, I was given gemzar without much reaction and now Arimidex daily and Faslodex shots monthly but they are expensive. My petscan last week was good. Lungs clear of plural effusions and liver tumors stable.
Prayers all will go well with you.
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Hello infolouise,
I am sorry you have joined the stage IV club , but glad you connected with us. liver mets can go without symptoms, till the end. Some have them and others don't. As for digestions problems , i had some before diagnosis which seemd more like colon and reflux but nothng else. With chemo now i do have some digestive issues. If you are taking hormones they do disrupt the digestive tract, you just need to watch for excessive symptoms or unusual ones and always inform your onc og any change. I do welcome you here, you will feel comfortable as all the ladies are helpful , loving and kind. I feel there was some neglect in deaing with your case whether medicare, insurance or other and it is a shame. But i do hope now you foundthe right doctor and the right medication, and i hope they will work for you.
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InfoLouise...I will drink another glass of pomegranate juice to your good PET scan! Welcome...sorry you had to come, but glad you found us
Woody...I totally understand the hubbub of being home for the holidays...but trying to understand someone else cleaning & doing the work...you are blessed, dear friend! And I should say...very deserving!
Judy...OMG...I'm married to the Gerber baby. Seriously, his college nickname...so I get the "young fella" thing. I always give people the, "I'm fighting cancer for the 3rd time, and chemo's really taking it outta me" speech. Sadly, it makes me feel better that they feel bad. Please forgive me, God.
Spring...I was a high school secretary...I know what you're talking about re: drama, however, not at 36. I'm just so sorry that this path is taking what you probably are incredibly good at~making sense of teenage woes~away from you. I also know the stress you endure, so I'm hoping the break helps you nurture yourself.
Spring...My mets were discovered when my liver was overrun w/tumors & I have no clue if I had liver pain. I don't know that I even knew where my liver was! But I remember the day she gave me the scan/markers results...then felt my liver & shook her head. Ugh...once txt started, they shrunk & I still felt nothing. However, now, when I'm stable, I do feel pain every now and then. I always lie down and try to feel edges (that's what the oncs call it). I never feel anything...but would I? I think it must mean there's shrinking going on. My onc says scar tissue shrinks. I always love seeing people say the liver rebuilds itself! Hoping, hoping!
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CT scan on Feb. 4. It was supposed to be Jan 22 but DH and I have a Bar Mitzvah that morning that I'm not willing to miss. I'm not putting my life on the sidelines for this disease. I doubt very much if it will make much difference (except for my own fears, which is a whole 'nother ball game).
Leah
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InfoLouise23 - Sorry you had to join us, but here's to a good scan. Thank You, Lord!
Leah S - I totally agree about not putting your life on the sidelines. I schedule many appointments, even treatments sometimes, around my life. Keep us posted on your scan.
Prayers for all,
Penny
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Leah, I am another one who tries to make my own plans a priority and fit in my treatment around them. It doesn't always work out but I feel I have more control when I at least try.
RonnieKay, If your liver is hard and rigid, It should be fairly easy to feel the edges of it. It sounds as if your treatment is working.
I have only a very small amount of pain in my liver after the really sharp pain I experienced a few nights ago. I slept well last night, a good 8 hrs. but I still feel exhausted today. Treatment and blood work on Thursday. My HB and neutrophils were pretty low last time so I am keeping my fingers crossed it will go ahead.
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Spring...thanks for the liver tips! So good so far. Do you not get neulasta w/your regimen? Hoping the numbers shoot back up & you can stay on track. I remember the first time my count was too low for navelbine...I cried while I had the perj/herc. That was the beginning of my neulasta affair. It never failed me. Will be thinking of you Thursday!
I'm glad you rescheduled your scan. A chance to celebrate with friends & family should definitely not be missed! Ps...ask everyone to pray for great scans
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Leah,
You are to schedule your treatment around your life 10 days will not make any difference plus this stupid disease should not dictate our lives. Enjoy your bar matizva and may you attend many more . I know you will be worried about your scans but i want to tell you mt TMs were rising weekly for the first month in my treatment now the last one i did it dropped by 10 points. So i hope yours do the same. I will pray for your scans to ease your mind.
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RonnieKay,
Are you still in Ca or you're back? I missed you , i hope you enjoyed your trip and took advantage of the sun to relaxe and do these walks of yours. I saw my Mo yesterday just before my session of herceptin/ perjeta, taxol he did a physical exam on me and since i told him iwa sfeeling some discimfort around the liver snd some dull pain , he told me he cannot feel the liver it is soft , it does not feel inflated or anthing, however , he thinks i have some gastro issues so he requesed a stool and urine tests and culture. And already started me on antbiotics of course plus the neupogen for the blood i get weekly three shots to keep my blood in line. I am doing fine so far on that level. Believe me i feel blessed also to have an in maid who does all the cleaning and irononing and specially when i am tired after a treatment. But here it is not as expensive as the US plus she is like part of the family. On the 22 nd , i will be heading back to lebanon with my son for my PEt on the 28 and then head back to saudi to start my fourth cycle of taxol and my fifth in herceptin cycle. I am praying a lot these days for all of us. Xoxoxoxo
Spring, i had carbo / gemzar and it was very tough on my blood both carbo and gemzar , so my protocol inculded neupogen ( like neulesta ) except it is not one shot it is five daily after the 8th day, with all this i still got one blood trasfusion for red blood cells and the last two sessions where reduced because of my blood platelets low counts. It is a tough combo, eat well, and rest a lot and keep monitoring your blood , any extreme fatigue or difficulty to breathe should be reported immediatly to your doctor. Good luck on this combo , i hope it gives you good results and does a good job on shrinking those tumors. You are in my prayers.
Penny, i am glad you are feeling well thanks be to God and i hope your next appointment with your Mo will give you more to be happy about. Hugs.
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I have not had neupogen but did have a blood transfusion when I was on taxol. My HB slowly went down during the course of my treatment with this chemo until my onc thought I could do with top up.
My blood tests last week were HB of 99, neutrophils of 2.3, WCC 4.6 and platelets 290. These seem to be the only results my team are concerned with before deciding to proceed with treatment. The HB is below normal and the neutrophils and WBC are in the lower regions of normal, After last weeks gem/carbo, I am worried that things will have slipped further and I will have my chemo postponed. I am certainly more tired than I was this time last week.
Woodylb, It's interesting to read about other people who are having liver pain/discomfort which can be attributed to something other than increase in liver mets. I would be interested to hear what the results were from your additional tests.
I have been thinking of getting someone in to help with the house work but have no experience of doing this and somehow it seems symbolic of not being able to cope well. On the other hand, there are days when I seem welded to the chair in front of the TV and cannot do more than go to the bathroom and get myself a drink.
Scanner unit phoned yesterday to book my next MRI. Hoping to see some improvements since the last one when Xeloda failed.
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Good morning, all. Happy to read everyone's posts this pretty, snowy morning in Southeastern New Jersey. I type this as I watch my 11-year-old daughter out front wait for the school bus. What's it like in your part of the world today?
:-) Penny
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4 below in Syracuse, New York! Cold!
Should add wind chill of 24 below!
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Hello All - My first time on this thread, but it's time. I've had cancer to liver for 2-1/2 years now. Started with Xeloda for a year, Afinitor for a year, and Taxol for 6 months. Starting Adriamyacin this Friday pending the Echo results yesterday. I've been getting good suggestions from this group for the past few weeks, even before my scans because I just knew even though I didn't have pain.
RedWolf, 15 degrees here in Central PA but going up to the high twenties - yay! And I love the picture you added. I am just too restless/fidgety for meditation, but my form of meditation is taking my dog to the local state park, down by the water where you don't hear a thing (especially when it's iced over) and really listening to me, if I explained that right...chemobrain has killed my language skills, lol.
Happy Hump Day everyone!
Laura
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Hi Penny.....here in Ohio we still have snow on the ground and it is very cold! Sure wish it would warm up a bit.....I have noticed if I go outside I get a bit short of breath....was only experiencing that when climbing stairs or over exerting myself before. I go next month to a new cardiologist since my old one closed his practice. Will have an echo done....hoping that the results won't be bad. My onc already suspended the perjeta...but I have still been able to get herceptin.
I am still really fatigued....had a treatment last week so spent quite a bit of time on the couch. Finally sleeping better. Food has been tasting awful, but made a dinner last night that wasn't bad..chicken curry...enough spices in it so it had some flavor. Problem was that neither I or dh put the leftovers in the fridge....it sat out all night! Rats! Was looking forward to some of those leftovers. What is tasting good to some of you out there these days? I get so obsessed over food....have been spending way too much time watching food network on tv. If my taste returned and I had the money....think I would just take off on a cross country trip and go to all those restaurants I have seen on the Diners, Drive-ins and Dives show!
Leah.....Will be praying for you to have good scans!
InfoLouise.....hello and welcome, glad to hear that the pleural effusions are gone and that the liver mets are stable.....hoping you get continuing good news.
Thinking of you all and praying you will have a good day today....rest well, eat well or as best you can
. Enjoy your families and friends....and this big old world around us! Love to all.judy
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Hi Laura.....welcome to the group. Know what you mean about the chemo brain messing with the language skills!
That sounds nice going to the state park with your dog. We just got our first puppy back in October. I am looking forward to being able to take him for walks in a park or at the bike path in town. Right now, I don't have enough energy and he has too much for me to attempt it alone! Hope all goes well with your new treatment on Friday. Will be thinking and praying for you!judy
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Welcome, Laura. I started "low dose, weekly (3 weeks on/1 off) Adriamycin in January. Xeloda didn't work at all for me; got nearly a year out of taxol; 2 infusions of doxil & a toxic reaction; now Adriamycin.
Hang in there & keep us posted on how you are doing.
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Spring,
My blood started to get bad after the third cycle on carbo/ gemzar . Right now my tumor markers are down but i am on a different combo. The pain could be cancer cells dying and flowing into the blood stream or could be somthing else that has nothing to do with cancer , and it could the cancer progressing if there are symptoms. I will have my scan in 15 days i will post my results , we will see of the tiny pain i am feeling is related. Meanwhile , be well and get a lot of rest.
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Syrmom, good to hear from you , it's been a while , i am glad you are well , and goid luck with adramaycin . My prayers are with you.
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Jaytee,
I am on herceptin/ perjeta too, and i habe been having some shortness of breath issues, i will have a heart echo next week , since nothing else seem to be wrong with me. I hope i will be able to continue on this combo. I am sorry you feel tired , get a lot of rest and i hope your heart is fine and that you can go back to perjeta. God be with you.
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Penny,
You are lucky to watch the snow falling, it snowed in my country after i left. In this part of the world now it is about 75 day and abot 65 at nigh and sunny. Enjoy the snow and your daughter going to school . Beautiful picture you put here m but then you always have nice pictures to post. Thank you . God be with you always. Hugs.
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Woodylb.....It's such a scary feeling to get short of breath, isn't it? I wish so much that I was like most women and my heart wasn't affected by the h & p. I asked my nurse at the oncs office if she thought I would eventually be put back on perjeta....She said she couldn't be sure, but that she had not seen the Dr put anyone back on it after it was stopped. Was sad hearing that after reading all the good things about people who get both herceptin and perjeta. Anyway....I hope and pray that you get good and positive results on your upcoming echo. I guess we need to take it easy....rest...avoid those activities that lead us to get short of breath.....that can be so difficult! I never minded winter weather, but today I am wishing that we had your temps! 75 sounds wonderful compared to single digits and teens!
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Jaytee,
It sure is scary when someone feels the air is not getting through. Mine was caused by neutropenia the first time. But i have noticed that everytime i get all three meds together for few days i keep coughing and short of breath. Then i am ok. What i don't understand is how come they cut you of perjeta , while keeping you on herceptin , because to my knowledge herceptin causes heart problems also. I don't think the nurse can answer can answer your question , the your cardiologist and oncolgist can do that. I know of alot of people who were taking herceptin then they had some heart problems the were stopped then later put back on.
I hope it would be the case for you so you can benefit from both medicine. May e in time he will put you back on it. Meanwhile , do what it takes to take some rest , don't do things which tires you or the heart. I really hope from the bottome of my heart that you will feel better soon and your heart doctor will ok the meds. My prayers will be with you , with the hope that you will soon get better and be able to take the full course. Hugs.
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Woodylb....at first my onc did take me off both herceptin and perjeta....this was after my ejection fraction dropped after starting treatment last June. After a few echoes where the number did not drop, she added the herceptin back....She is watching me pretty closely though....I think that she would prefer to give me both, but doesn't want to take that chance. My initial heart problems started back during my first diagnosis after getting A/C chemo. I did get a year of herceptin in then, but couldn't start it as early as she wanted and my ejection fraction went to a low of 42. During my 3 years of NED.....those numbers came back up.....I did a lot of walking and I also had been put on a beta blocker and a blood pressure pill. It's encouraging to know that my heart was able to recover back then.....Just don't know how long I can take the herceptin. There seem to be a lot of her2++ women who take herceptin for years. Can't see myself being able to do that. Oh well...one day at a time.....Just need to stay positive. Hugs back to you and easy breathing for both of us!
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Dear Jaytee,
It is good and healthy to take things one day at a time specially when dealing with cancer. For there is no telling what comes next. Who knows? You may be able to get back to normal again and be able to take both meds or continue on one. Either alternative is better than nothing. Your doctor is right to be careful and monitor you closely , it would be stupid to die from something else than actually the killer disease, that would be really ironic. Let's hope mine is still norma after two months on these meds. I also took adramaycin and taxotere on my first dx, this is why i am closely monitored also. This time. Unfotunately after my reoccurrence i never saw NED , iT was progression all the way, till my cancer seemed to change direction to he2+ , i was really running out of options. So let's keep praying that all this somehow ends well. I wish both of us fresh aor to breath and a lot of God's presence in our lives. Hugs.
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Good morning, all. Still thinking and praying for everyone. :-) Penny
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Morning Penny!...Hope all is well with you today...doing the same praying for everyone this morning! We have beautiful sunshine today...but it's still freezing cold. I have been staying inside as much as possible these days.....a walk to the mailbox or out to fill the bird feeders is about all I have been able to do.
Thanks again Woodylb...praying much for you to have good results on your echo! Hoping that the herceptin and perjeta keep any mets at bay. No matter what...let's enjoy this day! Is your son still home with you or back to school already?
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Hello Jaytee and Penny , i hope you are bth enjoying your crisp morning , while i am enjoying my cool end of summer like nights ! Have a blessed and beautiful day thanking Gd yet for another.
Jaytee, my son is still with me we will both be leaving together next wednesday after my chemo to our country, where he goes back to uni and i will get my PET scan and come back by the end of the month.
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RonnieKay, others with pain after chemo.
What is it? A year ago I had tumors and spots all over my liver with no pain and no clue I had mets but insisted they investigate an enlarged node under my arm that had been enlarged for years but then changed shape. They biopsied which led to scans and liver mets. Chemo ended May 29th with no pain in my liver even while being poked and prodded and then this fall I started getting pain in my liver area. Ultrasound and PET scan and blood tests in December showed nothing. Still it hurts. Why? It frightens me. It makes me feel like they're missing something. Shoot, maybe it's just back pain--or referred pain. I wish I knew. It's a nagging worry.
Otherwise--how are people with liver mets doing? I cannot complain! The Taxotere plus Perjeta and Herceptin knocked the tumors to nothing. Perjeta and Herceptin are keeping them undetectable. Hip-Hip Hooray!
Miche
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Miche - did they mention any dead tumor or scar tissue? Sometimes that causes pain. Wish I could be more help. But hey, thanks be to God for your NED status! :-) Penny
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Miche,
Are you talking about a pain which requires pain meds? Because i , like younbefore my dx my liver was full of tu ors no pain, but after i started chemo and specially the hercept/perjeta/taxol , i feel some pain specially after treatment , i am worried about it too . But my pain does not require meds just a small nagging dull pain. It comes and goes . I had a medica exam last week my onc felt nothing suspecious, i will have a PET next week , i can tell you more if pain is related to anything. Sorry i could not be of more help.
But yeyyyyy for being NED !
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