How are people with liver mets doing?
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Z. Yay for digestive system working! I assume that means you have less or no pain?
So, you're at Mayo to get the brain thing checked out, but you don't have an appointment. You're back to being feisty. Look out neurosurgeon, here she comes.
Hoping for good news for you about brain options.💞
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Z— thinking of you and praying that you get great support and results from the doctors at Mayo!
I was so happy to read that your digestive system is functioning again....I see that as a sign that Abraxane is working
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Hi Z. I hope you see someone at Mayo that can give you some information. I am in awe of everything you do to stay alive. Nobody will every say, "Z gave up". Never happen. Sending prayers, love and light ahead of you.
Kaylynne
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Update: got a call from one of my favorite nurses to stop taking the Afinitor.and tamox ( very happy about that)
In two weeks I will start a clinical trial, BUT I have no details whatsoever yet...I know it will involve a Faslodex pill and another medication but I don't know if it's phase one, two or three... or what the heck I'm getting into....
Will this very scary cat survive while treading into uncharted territory? Or will she lose her tail and whiskers? The saga continues....
My old MO was grateful for the gorgeous orchid I sent her and said she will take it home with her which made me very happy, as tomorrow is her last day. She will be working for Ily Lilly...I asked her if it was a good time to buy the stock...
she laughed...My inner child and I are currently celebrating surviving Afinitor with this warm piece of chunky appple cake. We will take the rest to the country this weekend...can't wait to be surrounded by green mountains an open skies...yeahhh....and no Afinitor to ruin everything..hopefully I will have the energy to hike—with a cane—and plant a garden, otherwise we have these amazing lounge chairs waiting to be set in the sunlight
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Boy, people are going through it here, aren't they? Holding you all in my prayers.
The DS8201a trial is off the table for the time being. Trial baseline screening revealed previously undetected lesions in the brain. It looks like there are four, all 1 cm or smaller. I'll be heading to Mayo to complete diagnosis and form a treatment plan. I'm guessing gamma knife or whole brain radiation, I don't have enough data to know for sure now.
They also detected pleural effusion. I have been having shortness of breath, so that explains it. They drained 1.65 L of fluid off my left lung. I feel much better now! They suspect that it is metastatic, but biopsy results are not yet back.
The good news is that at least my liver seems to be fairly stable. I have to check out the brain mets and plural effusion boards. Best wishes to all here in what seemed to be difficult times. For those of you who are having success with your treatment, please keep posting about it. We find it encouraging!
S
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snowfall—I’m so sorry to read about the progressions, but it’s a relief to know that you’re going to Mayo where you'll get the best care possible. Be strong, this too shall pass...
I wish you the best of luck with the results of the biopsy andyour future TX....
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Thanks, Miaomix. It's always an adventure and I'm focused on not falling out of the roller coaster car I find myself in
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Hi all! I'm new, but have been lurking for years, lol. Hormonals were an epic fail for my very er+ bc right out of the gate. I just stopped Xeloda, which was my first ever chemo, progression in liver and new mets, and will be starting Doxil next week. At the moment, I have many liver mets(14ish), but only two are active. One is 5cm and the other, I think, is 2cm. I am experiencing terrible constipation and was wondering if this is a se of having cancer in the liver. I was also one of the weird people that gets constipated by xeloda too. I have had an ongoing battle with constipation since I was a child, but tx is really making it into a quality of life issue for me. I dri k plenty of fluids and take softeners and my MO just prescribed reglan. Does anybody have some useful tips because I'd really like to get it under control before starting Doxil. I know cheese is a trigger, but beyond that I can't seem to figure out what the deal is. I've tried all the usuals: probiotics, miralax, lactulose, prunes, fiber, fluids, magnesium, senna. It doesnt seem to be as related to fluid intake, it's like my bowels are just lazy or something. Is this a se of chemo?
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I did have pain in my liver, lower right quadrant. After starting Xeloda, just a few days in, it hurt like hell and I had a fever. My three month scan showed shrinkage in the two largest, in half, but six month scan showed progression to larger than before. I suspect it was partially due to having to stop taking it while getting pelvic radiation for a new epidural lesion and the debilitating sickness that followed. What I find scarier, is not feeling the spinal lesion until it was 5cm and strangling nerves in my sacrum. Apparently, reg ct scans don't pick them up well and mri's are the best way to see them.
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Snowfall - At Mayo now managing brain lesions and progression. I am having a very productive week. I arrived in a state of panic but I feel better each day as the picture becomes more clear and a plan gets into place. I am familiar with the roller coaster. In my case, Neulasta gave the ride just a bit more edge. The craziness appears to be coming to an end for me. I just wanted to paint you a brief picture of a place where things are under control again. I hope to find you where I am soon. You are certainly headed to a great hospital.
>Z<
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Z— I'm so relieved to know you have great confidence in the care you're getting at Mayo!! May you receive the best and most appropriate TX, get over this hump, and get back home to your family soon!! Please keep us updated about what they propose! We all care about you!!
Bobbypins—I'm so sorry to read about your progression and I'm totally dumbfounded about the lack of response from all the various laxatives you've tried already, including the magnesium, which should have been quite effective.
As far as not feeling the progression in your spine, I totally understand, as pain that I hadn't felt for many months has returned, and now I'm not certain if it's SE from the medications I was on, or it's progression. I’ve been off the fentanyl patch for many months, and it might be time to get on it again....
I'm undergoing a washout period before going on a trial, so I guess I'll soon find out...
Fentanyl does not cause constipation, and the patch lasts three days, so if you're on other pain killers, you might consider switching.
Isn't cancer fun?
Be strong....they have many treatments and this too shall pass....
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Z, I am so very pleased to hear that you are feeling the craziness is subsiding! You have done so much to help yourself and others, and I am glad others are helping you.
I love my Mayo! They've been taking care of me ever since my diagnosis, and I could not ask for more competent and compassionate care. The whole system there is geared not only for medical expertise but for patient care. They are a constant blessing to me and my husband. When I hear some of the horror stories that others on this board have suffered with their doctors, I make a special effort to thank everyone who works with me at Mayo. It is truly a team effort there.
I'm feeling pretty good today, although still have more coughing than I expected after the thoracentisis. I'm eager to get to Mayo and figure out what we're going to do about these brain lesions. Onward and upward!
S
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concerning brain mets- I just had 27, yes that’s right, 27 small mets zapped via gamma knife on Wednesday. Now they were all small (4 mm or smaller) but they zapped them all. So when going through your discussions don’t let them eliminate gamma knife just based on number of mets.
The brain mets link is very helpful as well
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leftfootforward - Holy crapitoa. How are you feeling? Gamma knife is on the table for me. Will be in touch.
>Z<
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(repeated on the abraxane thread)
My PET scan Wednesday came back with no evidence of active disease (NEAD) from eyes to thighs after one cycle of Abraxane. The PET scan shows no structure therefore I don't know the extent of the remaining dead or inactive mets. Immediately prior to starting Abraxane I had 60% liver involvement. At this point, all we can say about tumor load is that the liver is significantly reduced in size, but still enlarged and whatever is in there is napping or dead. We can see that the acetites are gone.
I am now wondering about staying on Abraxane. If I don't have any abnormally fast growing cells, is chemo the right tool for the job? It seems like the new challenge is the regeneration of the liver and so the growing cells are the good cells. Do I want Abraxane attacking them? I am wondering whether to switch to a treatment with a different mode of action, one that doesn't attack growing cells. It seems like the way to go, although the options are unclear. Pondering this.
Still at Mayo, on the hunt for answers about brain lesion.
Thank you all for your prayers and thoughts. They appear to have been answered. Very tired. Probably the damn Neulasta. However, resting seems to be in order given the armageddon going on in my liver. Hanging out in my old fashioned boarding house room ($35 per day!) until my appointment with neurologist at 3:30.
>Z<
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Z and Snowfall - so glad you are both at Mayo getting brain mets under control. Z - how long will you be there? Rooting for you everyday! Snowfall - I beat a pleural effusion with faslodex + ibrance - after one year the lone lung met was gone and hasn't returned. Not sure if you have tried either med. Fas seems to help a lot of lung issues. I went to see my gallbladder Dr yesterday - one more week of IV antibiotics - bonus is that fluids can go in my picc line too, so no more arm bruises for awhile. Miao - if I lived closer to you with all that tasty looking food, maybe I could regain the 14 pounds I lost from my bathroom fall in Feb. As it is, heading for alterations today to fix a few pants. Very excited to be starting a new job with good insurance in August. I can work remote and be in the office a few days a week.
(()) C
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I have a liver biopsy Monday the 14th at the Cleveland Clinic. Can someone tell me about this? Is it dangerous? Does it hurt?
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I have a liver biopsy Monday the 14th at the Cleveland Clinic. Can someone tell me about this? Is it dangerous? Does it hurt?
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Hi lisa,
I had a liver biopsy last month, and it was not hard. It's also very safe with a good radiologist, which I imagine Cleveland will have. Ask for intravenous pain meds! They usually only use a local anesthetic, but I was nervous and asked the doctor on the spot for some pain meds in my IV, and gave me some Fentanyl - just enough to make the whole thing painless. You need to be awake because they ask you to hold your breath while they insert the needle, but you can do this while having meds. You need to stay in the hospital for a few hours afterwards to make sure you don't bleed, they will probably give you something to eat and you can have a visitor most likely. I went home and had no issues the following day, although they say no heavy lifting for a couple of days. Don't worry. It really isn't a big deal. But don't be shy about asking for pain meds.
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OMG Z no uptake in just a month!!!! That sounds miraculous to me. I hope you get good news from neurologist.......gist? Or surgeon?💞
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Z, your news made me cry with joy. I am so happy that the Abraxane and the fasting worked.
I don't belong to this thread, but I had to butt in to tell you how happy I am for you. You are a source of endless inspiration and information for the rest of us!
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Jesus Z, you've hit it out of the park!! Your strategy and sacrifices paid off big time! It's such a great blessing for all of us to be able to learn from your experience. You are formidable!!
Your amazing results give all of us great hope!
Z—I found this study regarding a maintenance treatment with Abraxane, but it's forlung cancer, I will keep on looking....
Safety and Efficacy Study of Abraxane as Maintenance Treatment After Abraxane Plus Carboplatin in 1st Line Stage IIIB / IV Squamous Cell Non-small Cell Lung Cancer (aboundsqm)
https://clinicaltrials.gov/ct2/show/NCT02027428
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/understanding-maintenance-therapy
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Thanks Grannax. You are my one granny cheering squad and it means the world to me, given your exceptional strength and, of course, longevity. Right behind ya!
Piggy, you think I would cry for joy but I just needed to lie down for a several hours. I was so afraid for a month. The liver pain did not abate, at all, during this first cycle of Abraxane. The liver pain might have been worse than before Abraxane. It is hard to believe that pain could be the body winning, even though so many people in this group have told me that happens. The stress was terrible. Just putting that out there for anyone with liver mets starting a taxane.
>Z<
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Z-Thank God that the abraxane was so effective. I feel so relieved and happy for you. Thanks for sharing your fasting strategy; I will definitely try it I am go to that kind of chemo. Rest well in your boarding house. Hope the appointment with the neurologist goes well.
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I was super scared for you, Z. I totally get that you are tired because your miracle came from digging in and doing the work to research and apply your treatment plan. I'm pretty sure you will be the author of a book describing your fast and choices of TX. I bet your doctors want every detail, too. They may even decide what you did is better than y90!
I'm happy to be your one granny cheering squad.💞
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YAY Z !!! I’m super relieved and happy beyond words!!! I’m literally crying tears of joy for you!! You deserve the absolute best, you truly are inspirational and such a role model in perseverance and resilience ❤️
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Z look what you did, you got everyone here on a high! That's super duper!! So much work but it paid off. You are a role model. If they gonna zap it when will they zap it? You deserve a good rest, you were going on andrenaline, and then life took over. HUGS and warmest hugs to you!!! We are all at your back. Z how oes one know when it's agressive cells or not? I thought that by nothing really making a difference for Dani, that would explain why there was so much progression, but if it's not that then how? Zar maybe staying on Abraxane at least one more treatment could give it more of a humph!!
Snowfall so glad you have this experience, for these few lesions definitely Gama should do the job.
Lalady good for you. Yes, i know about picc lines just keep it clean.So nice that you have this new beginning.
Lisa it should not be a difficult procedure the liver biopsy. A lot of ladies had this, including Dani. Some people only get a local. Some something to just make them a little sleepy. Some rest right after, and then back to regular life.It's still a procedure of course, but it should not be painful.
Miao best of luck on your new treatment.
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Z - I am so incredibly happy for you!! I love your perseverance! Gives me hope that I, too, will find something to knock me into nead!! How did it feel to hear those words?? I can't even imagine—I'm in tears for you, so I know I would have been a blubbering mess!
I have my liver biopsy on Monday...they said the procedure itself takes about 30 minutes, but I'll stay for a couple hours to rest, and let the sedative wear off. Like others have said...no heavy lifting for a couple days. Mapping on 5/21.
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Yay Z! This is amazing news. I'm so happy for you.
Mary
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Lisa, the liver biopsy is ok. Holding your breath when told seems the most important. I rested after, kept in hospital overnight to make sure there was no bleeding.
Z hope all goes well for you. You are an inspiration, your knowledge astounds me!
My thoughts are with you all
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