How are people with liver mets doing?
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Artistatheart, I can't believe they didn't catch that ascities sooner. I know from my husband that it can be hard to deal with but he said they can drain it and get it under control. I hope you find an MO that is more in tune with you. My MO measures my liver every 4 weeks and I asked my husband why and he said they feel for any swelling or change in the size of the liver.
I'm thinking of you all the time.
Hugs Anita
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Artist, geesh! What a shock to read your post this morning. You can count me with all the others who cannot believe a word your onc said about ascites being the beginning of the end. Guess I've been at the beginning of the end for 2 happy years of successful, virtually side effect-free chemo. My stomach was bloated and hard and uncomfortable like I was 11 months pregnant (sized at around 6 months, I'd guess). Beginning of the end...arrggghhhh! I'm offended. So glad you'll be seeing someone else. I am very sorry about the progression and having to face hair loss at a time when you especially don't want to do hair loss, as if anyone ever wants to do it. We all know that sucks like nobody else BUT I also know you'll look fabulous. When I was first dx and was grieving over hair loss that was right around the corner, I went googling to look at pictures of patients. There was one thing I noticed that made me feel a bit better. Every single person wearing a smile looked beautiful. I have never seen your smile but somehow it shines through the words you share here. So, no matter what, I know everyone will be glad to see you at that wedding.
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Artist,
I do not post often, but read weekly. This is a crazy path that we are all on, but I do not agree at all with your MO's comments that began your meeting yesterday.
I was on Abraxane for six months starting at the end of July last year. It was my first IV chemo since mets diagnosed in Jan 2015. You do not need a port to get started as it is an "easy" infusion and you should not need premeds. I have had a few scans with significant progression and know that I feel better once I get back on treatment. I did not have any real side effects from Abraxane except being a little extra tired and hair loss. I worked full time during treatment.
As to hair loss, I had lost my hair five years ago during dose dense chemo and was just dreading getting a wig again. My oncology center gave me information on a place in Los Gatos (close to San Jose) that only deals with breast cancer patients and their needs and I called them and went to an appointment and the first wig that I was shown has been just great. Here is the information (http://www.nextstepboutique.com). If this is too far to drive, I know that you can call them and they will know of places up closer to you.
Let's hope that the abraxane gets the mets under control and you will not need to deal with ascites, but I know that Rosevalley dealt with them for a long time and I will find her posts and send them to you.
I have been with my MO for five years and we have had a number of direct and honest and difficult conversations but every meeting has also been filled with compassion and understanding. My nurse practitioner is also a great support and I have been instructed to call the office about any issue that I am having. I do not know how long you have been with this MO, but I just cannot imagine any MO saying what was said to you yesterday to start your meeting. It also seems that someone at your MO's office should have been on top of the situation with your ascites far sooner. I hope that you can get started with the Abraxane and be at an oncology center that treats you with the respect and compassion your deserve.
My thoughts are with you and your family. I do not know if you remember Diane (from Palm Springs) who was on IV chemo for quite a long time ... we messaged quite regularly ... she always said "Not today cancer, NOPE!"
Oriole
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Oriole, I think you made everyone's day. What a lovely, thoughtful post.
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Artist, I am just dropping by to say hello and to let you know that you are in my thoughts. I agree with others who have already said this, you will look fantastic for your dad's wedding. Your beautiful smile and inner beauty will always shine through. I look forward to seeing photos of the wedding with you standing with your DH and dd.
Oriole, I remember Diana well. I always enjoyed reading her posts, and the quote that you included has stood out in my mind since the very first time I saw it in Diana's signature. When I have a bad day or think that things are going downhill, I say it to myself, " Not today cancer. Nope.", and I think of Diana.
Lynne
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I feel this thread needs a little humor, so here we have ... The Recycling Bin For The Cure. I was driving along and there it was ... As an art piece it would work ... an ironic statement about ribbon campaigns, with Artist's MO in the can, head first legs swinging. (If that MO can be passive aggressive, so can I.)
But these are issued by the City of Santa Fe, NM, to hold trash.
>Z<
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I have not written many posts to this forum. I am still new - and still quite overwhelmed by my stage 4 diagnosis.
After a CT-scan and following liver biopsy, I was diagnosed with several liver metastases in May/June. Prior to that, I did not have any symptoms. Did however have some sharp pains in my right side several times in January/February - but they stopped and I didn't think more about until after the diagnosis.
2 weeks ago, I started Faslodex/Ibrance. So far not many SE, but before that I had very little tolerance to Letrozole (which obviously failed me). The SE effects continued to grow on me in the years I took it.
This last week I have had a continuing (quite strong) pain in my right side just under the ribs (liver I suppose). Can any of you tell me if this could be a side effect of the meds - or is a clear sign that the sickness is worsening and the tumors growing? It is too early for me to have a new scan so I will not get any new scan results before mid-September.
Please do not sugarcoat if it is a bad sign!
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That garbage can . . . I am speechless!
Artist, about your daughter's wedding and the wig, when I lost my hair before, I found a wig that resembled my hair as closely as possible. It just looked like me - but with a good blowout all the time. When I went over to my sister's house the first day I shaved my head and wore it, she didn't even notice it was not my hair. And she knew my hair was coming out any day now. I honestly looked better than my natural hair. I still have pics of me up in the house wearing the wig. You will look great in the pics! Something about losing our hair - we tend to overcompensate on other aspects of our appearance (like make-up) and can look just fabulous (sometimes better than ever) for a special occasion if we put our minds (and make-up brushes) to it.0 -
Lisbet I didn't have any pain from liver mets before I was diagnosed. That was in November 2016. Since then I have learned that pain from liver can manifest itself in odd places. I guess they call it referred pain. After my y 90 procedure I had really sharp pain in my right shoulder joint and pain when trying to take a deep breath. I think the liver must get inflamed anytime you have procedures and it takes awhile to calm down.
It's only been a month since you had your liver BX? I only have my personal experience to go on but I think it is remarkable that I've had so little pain from so many liver mets. Before I was DX I just assumed it would be extremely painful if someone had many mets to liver, lung and chest. But, now I know that's common not to have pain.
No sugar coating. But, I doubt your pain is from progression. It's too soon to know. The first few months are nerve wracking. Because you don't know. And I imagine you're feeling like your body has betrayed you.
I've been on Ibrance/femara since January 5. My scan in March showed mixed results. Now I'm waiting till August for my next scan to see how my mets have responded to 7 months of treatment and 2 y90 procedures. The waiting, we call it scanxiety, is the worst. You'll see that every one of us has it. Even the scan won't be completely definitive. Sometimes it takes awhile to show true results.
It will help you to read the posts here. These ladies are remarkable, knowledgeable and resilient. It helps me to write here, to read, to learn and to have hope.
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Lisbet -
I had a bit of that starting ibrance and I still do occasionally. My cancer has been retreating on this protocol. I believe it was gastric distress. Ibrance does not have strong gastric side effects in my opinion but stress alone can mess up digestion. Play with your diet, walk, focus on stress reduction. Soft tissue mets generally don't present with pain or any sensation until you are pretty late in the game.
If we could feel mets this whole thing would be a whole lot easier to diagnose ... but you will observe that we all seem to get caught by surprise by progression.
Keep checking in with your experience and what is going on with you. The first months are emotionally very difficult but we've all been through it and we'd like to help you get to a peaceful confident place ... that takes into account the reality of what you are dealing with. No sugar coating here but we're mostly a happy and optimistic bunch.
>Z<
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Lisbet, i had progression to my liver last Nov 2016. My Oncologist could find nothing to work on them until late June. I never had any pain until the chemo starting working on them. They say you can have pain when the tumor is dying off.
You are on a good protocol and the same protocol wiped out my lung mets!! You will learn so much from this wonderful group of ladies!! Read all the posts and you will learn so much. If you like researching.....do lots of it and ask as many questions to this group as you like.
Most importantly...BE YOUR OWN ADVOCATE for yourself!!!!! We are sorry you have to be here, but we are always here for you!!
Hugs,
Robi
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Hello Lisbet54. Welcome. We all know how you feel and you will never be alone with our support.
I was diagnosed in 2006 and again, 2007 with DCIS, high grade, close margins. Proceeded with bilat mastectomies that 1st time, then radiation and tamoxifen the 2nd time.
Then BAM..10 years later with NO symptoms except difficulty breathing with exertion..diagnosed with widepread liver mets. The dz even spread to lung arterioles. After emergency AC for the breathing crisis, went on Ibrance/Femara. It has been 6 months. I have intermittent right side ache under lower rib since starting I/F. All CT and bone scans look great with no progression. GI physician said colon was fine.
I have gone from widepread liver disease (both scattered and measurable lesions) to ONE lesion at 2.1 cm. Due to chronic low platelets, my MO reduced my Ibrance to 100.
I decided to be optimistic and believe those occasional right side aches are cancer cells dying.
My life is fine, SEs are manageable. I keep planning and having goals...to include training for a 5K. Might have to walk it, but who cares!
We will all get thru this together.
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So Friday I had my appointment with "THE" Onc and she said nothing about the failure to recognize my symptoms. I have to wonder if when I got passed to the NP time and again whether she even got the messages. She did a physical exam of my abdomen and said there was still a lot of fluid, then said "Well, that's why I said if things worsen to go the ER!"
So yesterday, the day after, I already had to go the the ER again to be drained. Why did she not recommend I go now to avoid letting it get worse? They finally got it all out of there and I felt 100% better. I went to the hospital in my new town where both encounters I've had had been very positive, helpful, compassionate and friendly. Seems like a very good place. (Not my experience in my old town including the ER) The Dr there said I should not really be using the ER for this as it is such a grueling wait for ME, it's inconvenient for ME ect. He immediately set me up with a GP and Gastro guy for Monday morning so I could call for outpatient treatment FAST! So far I LOVE my new place and all of the people I've met in such yucky circumstances.
Thanks Robin, I too have heard of many who treatment got rid of the ascites. How's your cough doing? Any relief yet?
JFL, I agree nothing to lose girl! And I will work on looking fabulous no matter what....
Z, Haha I have to agree with you, I do think it was her way of "dumping" me after her big blunder and I was happy to comply. The garbage can is hilarious! Glad you are enjoying your down time and hope everything is healing fast! I'm very anxious to get back on my bike.
Anita, I am still shaking my head over this too. When I made the final call pleading for some help her NP told me this was a GP problem not a cancer related one.....?????????
kaayborg, I know you are right about the smile. If I looked as cute as you with the short cut on your pic I would worry even less! But I'll get on with it. Whatever I need to do.
oriole, thanks so much for that link. San Jose is not too far as my family lives in Walnut Creek, not too far from there, so I make the trip frequently. I have read Rosevalley's posts for a long time. I became friends with Stephanie, Hummingbird and Rosevalley on that thread even though I did not have that complication yet. And yes I do remember Diane! I loved her quote too and she was so full of humor and grace.
lisbet, Like Grannax, I too would get referred shoulder pain and a sharp pain when breathing in. It has since stopped. I also get other little twinges all the time which usually don't add up to much. Try not to stress over the little aches and pains or it can drive you mad.
Thanks ladies, Hope you all are well today and enjoying the weekend.
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So Friday I had my appointment with "THE" Onc and she said nothing about the failure to recognize my symptoms. I have to wonder if when I got passed to the NP time and again whether she even got the messages. She did a physical exam of my abdomen and said there was still a lot of fluid, then said "Well, that's why I said if things worsen to go the ER!"
So yesterday, the day after, I already had to go the the ER again to be drained. Why did she not recommend I go Friday to avoid letting it get worse? They finally got it all out of there and I felt 100% better. I went to the hospital in my new town where both encounters I've had have been very positive, helpful, compassionate and friendly. Seems like a very good place. (Not my experience in my old town including the ER) The Dr there said I should not really be using the ER for this as it is such a grueling wait for ME, it's inconvenient for ME ect. He never admonished me for using ER resources unnecessarily, it was all concern for me. I did tell him that was what my Onc said to do, her only suggestion. He immediately set me up with a GP and Gastro guy for Monday morning so I could call for outpatient treatment FAST! So far I LOVE my new place and all of the people I've met in such yucky circumstances.
Thanks Robin, I too have heard of many who's treatment got rid of the ascites. How's your cough doing? Any relief yet?
JFL, I agree, nothing to lose girl! And I will work on looking fabulous....
Z, Haha I have to agree with you, I do think it was her way passive/aggressive way of "dumping" me after her big blunder and I was happy to comply. The garbage can is hilarious! Glad you are enjoying your down time and hope everything is healing fast! I'm very anxious to get back on my bike.
Anita, I am still shaking my head over this too. When I made the final call pleading for some help her NP told me this was a GP problem not a cancer related one.....?????????
kaayborg, I know you are right about the smile. If I looked as cute as you with the short cut on your pic I would worry even less! But I'll get on with it. Whatever I need to do.
oriole, thanks so much for that link. San Jose is not too far as my family lives in Walnut Creek, not too far from there, so I make the trip frequently. I have read Rosevalley's posts for a long time. I became friends with Stephanie, Hummingbird and Rosevalley on that thread even though I did not have that complication yet. And yes I do remember Diane! I loved her quote too and she was so full of humor and grace.
lisbet, Like Grannax, I too would get referred shoulder pain and a sharp pain when breathing in. It has since stopped. I also get other little twinges all the time which usually don't add up to much. Try not to stress over the little aches and pains or it can drive you mad.
stephajoy, thanks....
kaayborg, now you can see me smile! This was a day a the beach when I was absolutely WIPED out from all this crap. Amazing how sea air can rejuvenate, as Lita well knows!
Thanks ladies, Hope you all are well today and enjoying the weekend.
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Hey gorgeous! What a beautiful picture. Honestly, these things happen to us all the time, ANDd I STILL cannot believe people do that. First off these business of being called "patient" should really be ILLEGAL, we are all people that either broke a leg, had a cut, or this monster. BUT we are all people. I really think they hide behind the word patient, so as to have one degree more of separation from you to the doc.
So wonderful to know that you found decent people that will be taking care of you. That alone will ease up the stress.
Now, onto getting that dress!!
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Artist, What a beautiful picture!!! I am so happy to hear you are changing MO's and the center sounds amazing!!! NO relief on cough yet, but it seems to be not as harsh as it was. It is still an annoyance, but I will get through this. I hope the pulmonologist has some answers. The other day at Sarah Cannon when I was meeting to discuss the Oliparb trial, the NP told me my cough was probably radiation pneumonitis! I have not had any radiation since May of 2015 and I doubt it just popped up 2 years after. I wish these Dr.s would just say....It could be a number of things, so go see a pulmonary Dr.!!! My MO prescribed codeine pills for cough and it does nothing, so I don't want to take them. Geez....hopefully get answers Aug 9th at my pulmonolgy appointment. I will probably have to have a bronchoscopy.
Has anyone had a bronchoscopy who can tell me what it's like?
Have a wonderful Sunday everyone!!
Robin
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Artist. Beautiful picture of a woman with a great smile. So happy you're getting better care where you live now!!! That must be a great relief!!!!
Babs
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Babs, ugh, I'm sorry to hear your TMs rose. What did your onc say? Give Halaven more time, or move on? Leftfoot, I hope your finger is much better now. Your ativan-influenced post was pretty funny. Hurt finger not funny. Linda, so glad you got a med that worked for n&v. Z, if you need any help putting Artist's former onc into that pink bin, I'd be happy to come and help. Perceptive of you to see the passive-aggressive nature of that onc's response. She deflected the blame rather than apologizing and doing better by our friend. SandiBeach, awesome that you are making goals. Walking your 5K, if that's what you do, will be every bit as much a success as running it.
Artist, What a wonderful thing to be there for your daughter's wedding. I'm sure you will find the perfect dress.(For shopping, decide if it matters to you whether the port shows.) I agree with JFL that it is possible to look fabulous even on a chemo like Abraxane. The important thing is the sweet spirit that shines from your face in that lovely photo. If you want to use makeup, go ahead and enjoy it. I used to use nothing but lipstick, so it was funny to me that while on Taxol, every few weeks I would add another thing to my makeup kit. First eyebrow mousse (after seeing that eyebrow pencils were not working for me). Then eyeliner, which was a great substitute for eyelashes. Oh, I look a little pale; add blush. Hmm, dark circles; get the makeup counter lady to find me the right concealer. I was shocked when people would tell me I looked beautiful (and it wasn't the fake you-look-great-for-a-cancer-patient, either). For going out or special occasions I would choose between my wig and a fancy cap. The cap was kind of like a 1920s style hat, made of faux silk with some nice detail and a bit of sparkle. I got compliments on the cap from people who did not suspect I was bald under it! Bravo to the ER doc who set you up with a gastro and GP. I am SO GLAD you are among caring people at your new center now.
Hello, Lisbet. A very warm welcome to you. Regarding liver pain -- Like you, a few months before my diagnosis I had temporary sharp pains in my right side. But pain can also happen when treatment is working. For example, I had various twinges while Taxol was whacking the tumors back, as shown by scan and TMs. And recently I had a big ache in my liver when I started Xeloda that corresponded to a nice drop in my TMs. I would say discuss with your onc and try to correlate it with blood test, scan, and physical exam. The interventional radiologist told me something interesting when he showed me the CT image of my liver. He said that I was feeling the tumor because of its location near the edge, where there are nerves.
Please forgive me if I don't address everyone by name in this post. I am thinking of you all!
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HI again. I'm so thankful for your kind responses to my question - and a little relieved that some of you did have pains in the beginning of the protocol. Of course it's hilarious if it has already progressed a lot - but at the moment I sometimes feel that I'm already dying....Stupid of course! but anyway.....
I'm reading on many threads, but the material is enormous. I must try not to focus too much on the situation. I can feel that this is very unhealthy for me.
Thanks again. I'm sure to come back and ask more questions.
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You are living, Lisbet. You are ok right now. And yes, I have found that balance is required. Read for useful information and support, but then go do and think about something else. Preferably involving nature, exercise, socializing, creativity, mindfulness.
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Lisbet, no details in regards to your question but I did want to say welcome. Your comment about knowing it's not true but feeling or thinking it seems to be the story of my life with this dx. The cool thing is that I started feeling sure I was dying and now I seem to think I'm going to live forever. Neither is reality but I guess that's improvement.
Z, the trash can and your fitting comments are hilarious! I usually read via email without logging in and so missed the full effect with the photo previously.
And Artist, I logged in to see your smile. What a beautiful picture of you both! You've got nothing to worry about for that wedding. Have fun making plans.
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Welcome Lisbet- sorry you're here but you're now with the best group of women!!!!! They will help educate and guide you and support you!
Shetland-My MO wants me to complete my second round of Halaven and then PET/CT scan. So I have my infusion Thursday night and the scan Friday afternoon. If it shows progression, we'll move on but if things are stable or better, then I'll stay on the Halaven.
Here I go on our usual roller coaster ride!!!!
Babs
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Yes, Shetland, I agree. We have to think about other things, like the new season of Game of Thrones.
Winter has come!
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Welcome Lisbet, You have joined a great bunch of loving, helpful and caring ladies. We are all in this game together! I had liver progression 8 months after discovering bone mets. Shocking, but somehow I could feel something was wrong. I felt sick and the smell and thought of food made me sick. Finally had two scans and had a spray of liver mets. I thought it was the end. My MO at Dana Farber immediately switched me to Xeloda and things are improving drastically for now. You will get over the fear but stay close to all of us on this site. I could not mentally deal with this if I didn't have all of the ladies that a full of knowledge and experience!
Z, I love that garbage can. Maybe it's for all of the bottles of medical waste that we are supposed to take to the hospital for disposal!!!
Artistatheart, I love your photo. You are beautiful and you will be even if you lose your hair. Enjoy your wedding and don't sweat the small stuff. I have a friend with bad leukemia and she wore a scarf and put makeup on and I told her she was so beautiful!! She really looked incredible just like you will.
Hoping for a good week for everyone!!!
Hugs,
Anita
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Artist - Great pic and the two of you make a cute couple! Good to hear you are getting the special care you deserve.
Lisbet - Welcome to these forums. I don't have words of wisdom, I'm still learning from all these great ladies on this thread. I was dx'd with widespread liver mets in May of this year.
Babs - In your pocket on Friday.
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Ascites most definitely can be reversible. My wife was accumulting 5 liters of fluid per week last year, and now, none. No one has been able to determine what exactly brought it on, whether it was the cancer in her liver itself, or her bodies reaction to killing it off (as it came on with the xeloda). They put her on diuretics and injectable blood thinners at the time to help, and she eventually quit them both. She even had a drainage line installed, and that has now been removed. Hers was caused by hepatic hypertension, an obstruction of blood flow through the liver, but what caused that is anyone's guess. Backing off the treatment may have played a role, or may not have. Eventually as the cancer got smaller, it reversed itself. One of the biggest risks from Bud Schering syndrome, or hepatic hypertension, is internal bleeding. Esophageal varices can form, and bleed. Also, the pressure has permanently enlarged her spleen.
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Artist - great picture with your DH! You are beautiful. I'm still upset over how you were treated. I'm glad you have found a new medical team and that they are caring and attentive! You rock!
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Artist - great picture with your DH! You are beautiful. I'm still upset over how you were treated. I'm glad you have found a new medical team and that they are caring and attentive! You rock!
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Babs, maybe you need some big guns too! Hang in there!!
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