How are people with liver mets doing?
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Thank you everyone regarding tumor markers. It is strange though they don't do CA27.29 at NCI - will have to ask our MO. I have noticed that these markers are more often effective in ER+ people or am I wrong?
Nicole, what I have learned about this disease is you can never wait. Never. Anyone who tells you differently (even your own gut) is not right. If decisions have to be made, they have to be made fast, although they might be quite radical. I know many would say that you have to choose QoL over hard treatments, etc., but here your life is at stake. I do not blame my wife, I can understand her - it is so scary, but she lingered for 1 month only (I begged her to go and see the doctor), and I am pretty sure that month cost us stage IV instead of II or III, as in that month tumor grew from a centimeter to almost 7 cm and spread to lymphnodes (even N3), and most probably, being so aggressive, it spread to liver during that month. One month, who could believe it... I cannot agree with MOs who take milder approach to stage IV young strong willing people and first try out 2-3 mild (comparably) regiments before going to heavy-gun chemotherapy because during these 2-3 regiments C mutates, gets resistant, i.e. gets stronger. MOs behave like this because they start with the belief that stage IV is incurable. "It is a marathon, not the sprint" and all that bullsh*t... In fact, some doctors believe that some stage IV are curable (like oligo but not only), even BC, even today, just science does not know what factors show the curability, so if a person is strong, young or willing, you should hit the beast with heaviest guns straight straight from the beginning. I am sorry for these harsh words but I think this side of the story has also to be heard. If you have an strong enemy attacking you with all its might, why would you use a pistol when you have tanks and helicopters. This thing is what always has puzzled me in oncology. Why the hell would I want to prolong my life for a few months? I want a cure, even if chances are very slim, even if statistics is grim, I want a cure and nothing less...
Saulius
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RIP Gumdoctor, sincere condolences to her husband, family, Grannax and all that knew her well. Sad sad news.
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Thank you for those that may have prayed for my bilirubin to be good.... The Lord has blessed me!!
1.1!!!!!!!!!!!! That is the LOWEST I HAVE EVER BEEN???!!!!!!!
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Nicole. Happy Dance💞
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Nicole- Thank the Lord. Hugs, my friend.
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Grannax, just read your news. I am so happy for you. Celebrating!
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Rest in Peace Gumdoctor. You were one very special lady and will be greatly missed.
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celebrate the good news Nicole!!! We will have our ups and downs. The ups are precious and give us all hope. You are never alone!!! May God hold you close.
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Moth - have you considered Getting a second opinion MO???? I have a primary MO but I also have my second opinion MO. He was my first and amazing but I moved states. He is really great for sanity checks and options. Between the two I have so far been comfortable with plans going forward. They don’t always see eye to eye, but I get the benefit of both in making decisions. I see my primary MO frequently and my second opinion MO every 6 months and connect with him by email.
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Not sure if I’ve had too much time on my hands with this pandemic, it’s allowed me time to research and think about each of us .....our unique situation and this terrible disease that has taken way to many beautiful souls! I celebrated and praise god for Advancements in treatments options and good outcomes that are shared with us! Technology that allows us to share and understand this disease better. Holding this groupin prayer tonight.
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my mom just put in a prescription for tucatinib: we shall see if it goes through. Hoping it does do I have anothEr shot of getting treatment to my brain.
I will stay in kadcyla to keep my liver stable. At least that’s the plan.
Looking fir a little relief after a very long grind the lady 2 years.
Thinking of all of you. During these very trying times.
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hopeandgratitude, I'm in Canada. Our cancer agency is province wide, and a UBC research facility. The oncologists all work together and there's additional province wide tumor board meetings by phone each week where they bring up tricky cases and ask for input. I feel pretty comfortable about her recommendations right now. The only thing I'll push for if I need to come off the trial is referral to an IR that does y90. Or maybe I'll ask for a online case review /consult from one of the y90 experts in the USA and then a referral locally
Thx for your suggestion tho
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Can anyone tell me what it means if the WBC is high? the top range is 10. I am at 16??
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Hi Nicole. That might be worthy for a phone call to your MO. Sometimes that means infection, but I seem to recall you got a Neulasta shot which might be revving up bone marrow. But call.
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Yea no my MO already saw blood work said i am good...it must be the neulasta
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Ok, your MO just seemed to be taking a big jump somewhere in there and I was a bit concerned. But if you are comfortable and trust, that is what matters most.
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Yup trust her 100% and I feel great. All my other numbers are perfect...lets not forget I am only 7 days out from the Neulasta shot and before it my WBC was perfect...and I am also only 7 days out from chemo...my ALK Phos was a tiny bit high but nothing alarming by any means..and other than those 2 my blood work is perfect!! We are really pleased the numbers are so good only being 8 days from all those meds and chemo
So there really is no reason for her to jump to infection when all my numbers are perfect and I feel great. I just walked 2 miles and washed my car
Actually just got an email from my MO:
"Hi Nicole -
Please do not worry about your white blood cells. They are doing exactly what they are supposed to after the neulasta - the whole point is for the shot to boost your white blood cells. I am not concerned at all.
The total white blood cells are 16.1. The absolute neutrophil count is 11.6.
Please be reassured that they are fine.
The increased alkaline phosphatase is due to the medication - that can happen about 8% of the time. We will check it again next week. No meds or things you need to do.
In regards to L-theanine, from what I can tell it has been studied in animals and in the lab but yet in a large clinical trial. I would personally prefer you avoid it for now. Also - the liposomal doxorubicin is a bit different than regular doxorubicin so I am not sure if that matters. These things can cause toxicity that we don't know about until they have been studied. But ultimately up to you.
I am looking forward to seeing you and your labs next week."This why I just love her...all this on her day off...she read 3 studies I sent this morning about the L-Theanine...
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Nicole. It's very kind of her to address your concerns so thoroughly. She sounds like a good MO💞
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Just wanted to post an update: Had to have another parencltisis yesterday, and they took 4300 ml of fluid off again. I actually came down 16 lbs between yesterday morning before the procedure & this morning. Still working on finding out what is really going on with the liver. They took more blood for a liver fibrosis test and some others. Based on those results, we may do a liver biopsy of the non cancerous part of the liver to see if there is underlying disease. Still trying to get all of the edema out from under the skin and taking huge amounts of diuretics. Hate having to put off chemo more, but needing to figure this out. When we do restart halaven it is going to be at the lowest dose in hope that all of the crazy side effects won't occur. We don't want to lose this treatment this fast.
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nbnotes. Did this suddenly happen? You must be miserable. Do you have someone to help take you to all these appts? Can you eat at all? What a nightmare to deal with this on top of figuring out when tp restart chemo
You seem calm and taking each step thoughtfully to resolve this. It will get resolved. There are plenty of us that have experienced a crisis and those times are now behind us.
S
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SandiBeach57 -- At end of March I went off Gemzar after a pet scan & it shoed some growth but also some ascites around liver and spleen. We started halaven that same day & it was a large dose b/c I'm not a small person. It was somehow the perfect storm. My counts went to critical lows and lots of craziness, but the ascites went crazy . I seriously felt like a balloon that was about to pop, and I got a parencltisis on April 15th. It built up again in 2 1/2 weeks in the abdomen, and the edema never really went away the first time. I have been fairly miserable but trying everything to help with the swelling. You never realize how much you appreciate your leg bending until you are super swollen behind your knees, etc, lol. I'm lucky to have an MO who cares and will not stop until there are answers. She actually got me a teleheath appt w/ a liver specialist last week who wasn't seeing any patients until August or September. That helps keep anxiety away as I know my MO is going to figure it out, and I"ve read so many accounts from people here that had a bad spell but got it figured out.
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NBNotes,
Wow, it does sound (as you thought at the time) that it might have been too fast with the halaven. In that respect, I guess right now it's good to let you body settle down until your doc can figure this out. Your MO sounds great -- especially getting you an appointment with the other doc. Hang in there. This too shall pass.
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NBNotes...I also changed chemos to Halaven on March 17. I had 1/2 a normal dose and my body had a horrible reaction and I had a 5 day hospital stay. Details posted last month on this thread. My last chemo was March 17 and after some discussion with my MO, I’m going to try again this Tuesday with a 1/4 normal dose. Pending bloodwork results of course. Scared and so anxious the same reaction will occur again. I had well over a 30 lbs plus weight gain. I feel your pain of being so swollen and uncomfortable.
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Hello to everyone here. I've been lurking on this thread the last couple months awaiting confirmation of liver mets after 4.5 yrs NED with bone only. Thank you all for the encouraging information I've found here.
Nbnotes, I'm so sorry for all you've been going through with this damned disease! Sounds like you have a fantastic pro-active MO, though, and I trust this will resolve for you sooner than later.
Hugs to all.
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Bliss...are you saying you have it confirmed that you now have liver mets?? If so, I am sorry to hear that...but glad you are here with us and hopefully we can be here for you with any questions you might have and for support! We have a GREAT group of ladies here!!!
(((((hugs))))))
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bbpie - I hate that you went rhrough that on Halaven, but thank you for sharing your story. It helps to know that my body isn't the only one that has gone crazy on that drug! So, they think the weight gain was fluid due to Halaven for you? Hope it goes well on Tuesday!
Thanks Bliss58 - Sorry that you are having to deal with it in your liver now too.
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Thanks ladies. Nicole, yes, I'm confirmed now to have liver mets. Ugh. And so it goes...
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Dear Bliss, I am so sorry to hear the news:/ Through those almost 5 years you were only on Aromasin? Saulius
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Hi Bliss, you came to the right thread. All of us have gone through so much, I doubt there's a question we can't answer. 💞
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nicolerod- we are in the same timeline. I became stage 4 one year ago And I am on my 4th line of treatment. I have yet to become progression free 😟
Tomorrow I’m having PET and abdominal MRI. Results on Wednesday. Hoping my current line is working!
Blessings to all in this unwanted but so appreciated sisterhood.
Dee
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