How are people with liver mets doing?
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Thank you Katfuller15 for relaying this sad news. I am closing my eyes and holding her hand. I wish she knew how many people are with her now..maybe she does.
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Thank you, Katrina. Comfort and peace to Lisajo and her family. Awful news.
Katty
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Those of you who have or have had ascites. How quickly did it settle? Did the diuretics cause any issues and have you had it back again?
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Tennille, I had it and it cleared up after I started abraxane. I also do lemon water and I'm pretty sure NAC can be helpful. I didn't have a lot, I went up one size in pants. I also have some fat so it's hard to tell if it's completely gone or if it's still there. Also eat lots of watermelon. I was pretty alarmed about the ascites too, and very frustrated that my oncologist didn't seem to be. In fact he did not even mention it!
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scwilly: glad you are feeling better.
Sad to hear about lisajo.
Tennille: hoping the diuretics take care of your ascites.
Prayers and hugs to all.
Tricia
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tennille, I had ascites last summer. My Onc took it very seriously. I had to get drained at least 4x. The fluid was also tested for cancer cells. The ascites cleared up after I started Avastin, Taxol, and Carboplatin. My Onc felt the ascites was an indication my liver wasn’t functioning properly. I didn’t have any blockages but was also considered to be in liver failure at that time. Thank God I was able to recover.
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I had small amount of ascites at Stage IV dx. It cleared up when I started treatment. Probabably caused by liver mets.
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It is very hard to hear about LisaJo. Thank you for updating us. I am holding her hand mentally as well.
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Am very sorry to hear the news about LisaJo. I wish they could figure out something to help her liver.
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Gracie...me too. She just had a scan last Friday and was waiting to meet with her doctor this week. She’s been extremely fearful for sometime but her liver enzymes didn’t seem critical the last time she told me with the exception of her bilirubin taken a huge spike in less than one week. I don’t know at what state she’s in right now but I do know she would want to keep trying if possible. Things just happened so fast.
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Here's a story from The New York Times that I thought you'd find interesting:
• Closer ties between nonprofit research centers and corporations are fueled by a rush of potentially breakthrough treatments. • But a top cancer hospitals is struggling to balance the urge for new treatments with holding true to its mission.
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I've now been in this immunotherapy trial at for three weeks and will start my second cycle of treatment on 1/8. I get one infusion of Opdivo/Nivolumab on the first day of each cycle (only once per month) followed by 8 hours of hourly blood work and EKGs. That is one L-O-N-G day; the first day of the initial cycle I was at MDA from 8am Tues until 12:30am Wed, due to some delays. I take two oral doses of the test drug daily with a 6 hour fast before the dose and two hour dose afterwards. So far, no SEs (a few minor patches of rash) and my blood work has been good. I am feeling great. Both immunotherapy drugs are hard on the kidneys, so I have to keep pushing myself to drink enough water to stay hydrated and flush my kidneys.
The rigorous schedule of visits and fasting regime around each day's oral meds has taken some adjusting to, but after the first week, I figured out what worked best for me and accepted the rest. Everyone I've come into contact with so far has been wonderful, and I am addicted to being covered with heated blankets on demand. Living the life! Assuming that all continues to go well this month, my next *pass or fail* scan will be in early February.
Onward through the fog, all the best to each and every one of you in 2019,
Katty
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Please keep us posted Kattysmith....this trial sounds really interesting....I'm greatly interested in Immunotherapy...may it result in a NED outcome when they scan you.
What hospital is offering this trial
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Miaomix, that is an interesting article. My better nature agrees with the doctors who don't want their colleagues on boards and sometimes getting hundreds of thousands of dollars. The little gibbering part of me, deep inside is constantly whimpering 'I'm dying of cancer. I'm DYING of cancer! Do something. Do ANYTHING! Now now now now now...' Still, the old conflict is that maybe these experts can steer the resources in the right direction, but when might that moment come when the dollar signs cause them to divert away from a future cure to something less promising, perhaps when they don't even realize it? On the other hand this set up may have led to Ibrance, etc, but it also may have squashed something better. I hate to think a cure might not get the attention or that they might not fine tune existing treatments for better results and QOL because...where's the money in that? It's complicated.
Katty, very interesting trial. I hope it continues to be so tolerable and that it will be extremely effective. I look forward to reading your posts about it.
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MeowMix, I am at MD Anderson, but it is a multicenter study with a capacity for 280 participants. A total of 18 will receive the treatment at MDA. I don't know the location of the other treatment centers offhand.
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hi Muddlingthrough....interesting perspective you have on that article and on our predicament...it was interesting to note that Herceptin, one of the few drugs that actually works, came out of MSK under Md Beselga
The reality is that 1 in 2 people will be diagnosed with some form of cancer in their lifetime, including all our MOs, nurses, and caretakers at the various hospitals around the world.
Steve Jobs left to his own devices lasted fourteen years with liver and pancreatic cancer, but sadly died following a liver transplant, the same can't be said about David Bowie and some of the Rockefeller's and Koch's brothers ...if all these wealthy and powerful people, with all the money and privileges couldn't survive this disease, it leads me to believe that cures are NOT willing being held back, I would guess it's just sheer incompetence.
Maybe, the answer is right under their noses, but they keep on looking in the wrong directions. After all diabetes causes all sorts of diseases: it affects the heart, the kidneys, the eyes, the loss of toes...yet it's caused by just one very simple problem: lack of insulin that can be corrected with a proper diet if need be
Kattysmith....thank you for the info, sending you more vibrant wishes of success with the TX. I will ask my MO at MSK when I see him next if they are participating
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Kattysmith, I've heard rashes are actually good with some immunotherapy meds, it shows that it's working....except not necessarily for keytruda (pembro) which I'm on. I've had several other side effects, but not a rash, and I have had a good response. I will have my next scan in a few weeks. Good luck!
Very sad to hear news on Lisajo, praying for her treatment and care.
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I'm feeling heartbroken for LIsaJo. I with her comfort and love.
S
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Thank you for those sending me best wishes. I am a little more hopeful than I was a few weeks ago - but feeling the weight of this dreadful disease. When I meet with my MO in a week or two we will be discussing whether to add Immunotherapy to Cisplatin - not something that's been tested or researched, but I can't tolerate chemos that have been.
I'm feeling a little stuffed with my slightly expanding stomach. I can't wear anything but stretchy leggings. Its feeling sore this week, but Ian - rightly or wrongly - cutting that down to the chemo doing some work. I think I must have a little water retention, but it is my liver getting larger too. I am now joking with my DH and now say I have a 'beer belly' - mine unfortunately not through beer or over eating. The former banned due to my poorly liver with all other alcoholic drinks - though beers/wine don't taste so good nowadays and later also my appetite is so much less that it as - probably a good thing lol. His is definitely seasonal over consumption.
Sarah
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Kattysmith, keep us posted! KPW, I have been reading your updates as well. I hope that the barrier can finally be broken through with immunotherapy and BC.
Muddling, I agree with your post and have a similar perspective. My gut tells me the answer to cancer is much more simple than the researchers believe and there may be a cure out there that is a tweak on an existing medication, such as in the delivery system, or in an over-the-counter product, whether for cancer or some other ailment, or possibly something that targets a mechanical reaction rather than a purely chemical one (such as a medication that breaks through or reverses the stiffness of the cancer cells) or something very boring that is already in existence. Simple, boring and generic do not equate to large profits for big pharma and it is big pharma research dollars that are necessary to conduct the trials. It is like Cinderella being overlooked when she is in her normal, ratty clothes. No one recognizes her as the princess of the ball that she is or even contemplates her being anywhere in the same league as those at the ball. I suspect our cure, or at least the road to our cure, is hiding in plain sight in drab clothes!
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2 months post SIRT (Y90) LFT'S absolutely off the charts. Ascites around lungs. Yellowish tinge starting to hit my eyes. Platelets low. Petrified beyond belief. Need some good news stories if possible.
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Miaomix I don't think money is withheld or research either. I don't even see how people could believe that, but some people do. I agree with you completely that cancer happens to everyone, rich or not, and to our own doctors and their loved ones. They want to unlock it as much as we do. I don't believe in some shady element holding back cures or better treatments. As JFL said I'm worried that something old might be a big help but not many are looking at it because it's not a shiny new thing. Recently I've read of antabuse and statins as being interesting. I hope they will run those leads to the end. They may not be "it", but perhaps will lead to better things. There is a lot of money and brain power in this. I just pray the ones who decide where to use it choose wisely. I always like to read your posts.
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Tennille76, I don't have stories to share but I'm sorry you're feeling so scared and I'm sending you warm wishes, hugs and prayers. I hope things can still be turned around for you.
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update on Lisajo6: she left the hospital yesterday to enter an inpatient hospice facility. She passed away this morning. Please keep praying for her family. I’m beyond heartbroken that things changed so fast for her. I truly hate this disease.
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Thanks for letting us know, katfuller15. How sad!
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Katrina, I am so sorry and sad to hear about Lisajo. She went very quickly, and I hope she passed peacefully without too much pain. I will keep her family in my prayers. This is a difficult time for them, and I wish them peace and comfort. I hate this disease, too.It shows no mercy or fairness and is unpredictable. Thank you for updating us. My heart aches for yet another loss.
Hugs and prayers from, Lynne
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Tensile, Do they think your symptoms are the result of theY90 procedure and will improve over time or are they treating you for the symptoms you are experiencing ( new treatment perhaps)? Are they planning further testing to find the source of the issues? I can imagine how frightening this must be for you. I hope things turnaround quickly and that you feel better. I will keep you in my thoughts and prayers.
Hugs and prayers from, Lynne
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Tennille. I had Y-90 for 3 small lesions in March2017. I didn't experience what you have but by the 3-4 month scans showed I had lots of liver mets (too many to count). I started Abraxane in in Augusta 2017 and switched to Lynparza Dec 2017 which worked wonderfully for 5 months. By July of 2018, I was scheduled for another liver biopsy bc my Onc thought my cancer had mutated to triple negative (it had not) but my liver was out of control by August. My liver enzymes were at levels I didn't think could exist. I developed ascites and jaundice. My bilirubin had gotten as high as 12. By that time, my Onc told my husband & I that I probably had 3-6 weeks (I was dumb enough to ask). But she said she wasn’t willing to give up. So we threw everything at the cancer. I started Avastin, Taxol, Carboplatin and added back the Lynparza. The ascites settled within the first week after treatment. I returned to work Nov 1 and my Dec scans showed all 30 lesions were not active but scar tissue. I am feeling the effects of my liver healing and now it seems the chemo is worse in terms of how my body is able to handle it. Right now my Onc is tapering me off chemo to possibly put me on an oral therapy
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So sad for Lisajo's passing.
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I am sorry to hear about Lisajo. She had such a good response to her most recent chemo that I thought things were turning around for her in the grand scheme. She went very quickly. So sad.
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