How are people with liver mets doing?
Comments
-
bbpie and shetland- Ok, this just plain sucks...heart aching for both of you. holding you in the light and wanting both of you better STAT.
Love, Mary Jane
0 -
Ok..Ladies... so for the past 4 weeks and I did ask you guys a few weeks back about liver pain. Not only have I had periodic pain but for the past few weeks my wedding band doesn't fit at all. I don't think I look swollen and I don't feel swollen but why else wouldn't it fit?
Is that a sign of my liver failing, tumors spreading Ibrance failing?
I did message my doctor just really want your thoughts.
Nicole
0 -
Nicole -
I am dealing with liver symptoms right now so more familiar than I've been. Studying alot.
Swelling and pain suggests changes going on. Does not necessarily mean doom and gloom. You may need some new imaging to check things out.
I just had a liver MRI with Eovist contrast and a doppler ultrasound. Will be getting results this Thursday or Friday along with any changes to treatment plan. MO is taking my case to liver tumor board this Thursday. Liver infarcts are very rare so they are collaborating to decide what to do with me. For now, MO Dr Angel had me get my IV chemotherapy (Abraxane) per usual yesterday.
Best Wishes to you...
Gumdoctor
0 -
Thanks...Gumdoc with all you are going through the fact that you took time to reply to me means a lot!Thanks again.
My husband thinks its just some water retention because I had a cheat/treat 2 nights in a row (but not last night) Sat. & Sun..Popcorn....from target. Which is probably bad and salty...but I do not look swollen at all not even my fingers its almost like it comes and goes..
0 -
I had a checkup and scan discussion with my MO today. My scans were good, showing improvement with shrinking liver mets (now 2mm and 5 mm) and stable 4 mm lung nodule. She is questioning whether the lung nodule is even cancer now as it hasn't changed since my original dx in January. I'm now being considered for a more aggressive treatment involving radiation to the liver and possible lumpectomy and axillary node removal (one is still showing up). There is some kind of trial about this, but I'd have to do it before Ibrance fails. I have consults with breast surgeon and radiologist in November, (along with more imaging), and my case will be discussed at the hospital Tumor Board. I'm a little nervous to change what seems to be working, but maybe this more aggressive treatment will be the right thing. I'm just glad no decisions have to happen right away. Any thoughts from you all?
Also, my MO said I’m “young and healthy”, but I’m 60 and have MBC, kind of made me laugh a little.
0 -
So much going on with everyone. I've been trying to catch up after a week off. My sister was here for nine days. She was with me for cycle 3 of Gem/Carb. My second infusion was yesterday. Now, I have two weeks till I start cycle 4.
I found out my scan won't be until November. Grrr
I'm feeling a little queasy this morning but it will pass .
So sorry to hear about progression/ possible progression from several of you. Yes, what a life we live. Ups, downs, unknowns........all just a day in the life. How do we keep on? A mystery.
My sister and I managed to have lots of fun in spite of everything else. She helped me get several fun projects done. We were very busy. I'm ready for some R&R this week, no projects. BUT life happens. Today the HVAC people come at 9:00. UGH. Yes another water leak. This time from my attic, from a hole in the AC pipe. UGH. How much will this one cost to repair/ replace? I'm not even finished repairing the water claim that destroyed three floors. LIFE
We are tough, that's how we survive. We have GRIT.💞
0 -
I had results of scan today and unfortunately Xeloda is no longer working. My one liver met has increased from 2.5 cm to 6.3. The next treatment is Vinorelbine (Navelbine) Occologist has said next treatment is IV chemo. Has anyone been on Vinorelbine? I have opted for the oral form. Has anyone experienced itching. I am on fragments so it may be that, otherwise it is my liver acting up.
Love and hugs to all x0 -
Yevette. So sorry to hear about progression. X failed me, too. I've never been on Navelbene. Itching is scary but I have not had that SE w my liver mets.
I don't know if you have thought about a local TX for your liver met. There are several. I had y90. If interested, check with an Interventional Radiologist. 💞
0 -
Yevette. So sorry to hear about progression. X failed me, too. I've never been on Navelbene. Itching is scary but I have not had that SE w my liver mets.
I don't know if you have thought about a local TX for your liver met. There are several. I had y90. If interested, check with an Interventional Radiologist. 💞
0 -
Duplicate posting from TNBC Stage IV thread
Well, carbo/gemzar have quit working after 23 months. I have been so blessed to have been on carbo/gemzar for so long with minimal side effects. Aug 6th MRI showed progression of liver tumors.
Had liver biopsy Sept 4th and sent tumor tissue to Caris for testing. Hopefully wil have results first part of Oct. I also had a Quardant test performed which only showed a PIK3CA E81K and PTEN alterations. Hoping the Caris test shows more.
Started Xeloda (3,000 mg daily) Sept 11th on a 2 week on, 1 week off schedule. Did well on first cycle with few side effects. Nausea (taking zofran and Ativan), fatigue, mouth sores (salt water rinse, magic mouthwash). Feet are a little red but not tender or sore, hands are good. Hoping 2nd cycle goes well.
Next scan is Nov 20th. Praying the xeloda works well with little SEs.
0 -
hartrish- I got 5 years NED on Xeloda. May you be as lucky.
0 -
leftfootforward: that is amazing. I hope xeloda works on me. Did you have mouth sores? If so, what did you do for them? What was your dose on xeloda?
0 -
hartrish- 3500/day. I had sone mouth sores in and off . I just used magic mouthwash I made myself.
I was very lucky.
0 -
Yvette, I am on IV Navelbine since April 2019. It is a 10 minute infusion with no premeds and is very tolerable. I haven't had any hair loss or major side effects - some neuropathy and a bit of fatigue but that is it. In the US, we do not have the oral form. I really wanted to take that for convenience. My MO said he would support it if I could figure out how to get the pills from the UK or somewhere else in Europe. It appears the only reason it is not available in the US is due to $$$. Not profitable enough for a drug company to continue to pursue the oral form.
0 -
JFL thank you for your response, very helpful. Fingers crossed that it works with minimal side effects. X
0 -
hartish. Sorry to hear about progression. I know X works well for a lot of us. But, your two years in Gem/Carb is inspiring for me. I just finished my third cycle of it. November scans. Hope it works for me like it did for you.
I started a Gem/Carb thread. If you could post there it would encourage those of us on this TX.
0 -
Looks like I am moving in to another treatment after a year on weekly taxol. My latest brain scan wasn’t terrible but I still have brain Mets and the arO wants me to try something else. He said if all else fails, we can go back to zapping them again. He was talking with my ZmO in the phone with me in the room and. Was mumbling something about me advancingvto some sort of brain cancer he can’t try so he wanted to try this now.
My MO has ordered the new drug Neratinib for me. It’s s pull dobthere is that. It’s a targeted therapy that does go across the BBB so that’s good. I will be off systemic therapy which makes me nervous fir my liver. Scans will be in 3 months to check on everything.
I know you all appreciate how big a gamble this feels like. Really hoping it works.
0 -
Leftfootforward, sorry to hear about having to switch treatments. I hope Neratinib does the trick on your brain mets.
0 -
Why would not it work on liver as well- it is anti cancer and it us in your blood stream ? Apologies if it is a stupid question.
0 -
another one/ not a stupid question.
I have this fear because when I switched to TDM1 previously my brain Mets stabilizes bur my liver Mets grow again quickly. TDM1 is a targeted therapy so I have.fear the same thing will happen again.
The new treatment should work on both.
Just my fear getting to m
0 -
leftfootforward..I amhoping you have much success with this new treatment and you have no side effects or minimal and manageable at that.
0 -
LFF. Hoping the best for this TX. Yes, I would have the same fears you have. Scary stuff.
I have to wait till November to see if my Gem/Carb is working. 😑 The waiting is crazy 😜 making.
0 -
Leftfootforward, thinking of you as you move to this new treatment. It is always an anxious time. I always admired how you tolerated the taxol so well for so long. May this new tx be just the right thing to knock everything back. Hugs to you ~ JL
0 -
I see. Your medical team seems to be very much on the ball. I did not realise how much of an art it is - mixing and matching treatments at this stage. Fingers crossed for you.
0 -
(Cross-posting from Halaven thread to save effort.) Here is my overdue update. I am in the hospital for the fourth time since July. This is Day 4 of my captivity. The first three hospitalizations were for fever, and only the first time do I believe there might have been infection, near the bile duct stent. The other two fevers I think were induced by Halaven. But this time I came in because of abdominal pain, upper inner left. If I moved the wrong way it would spike and make me cry out. Getting in and out of bed was difficult and painful. Chairs/toilet also. I had to get help and try to use only my arms and legs and not engage my abdominal muscles. Had to take Vicodin. Long story short, a CT showed probable abscesses on left lobe of my liver. Although it could be tumor. Waiting to hear if they will attempt biopsy. Too small to drain. So I am on IV antibiotics AGAIN. The infectious disease specialist went over the whole history and prescribed a switch to a new one that I am happy with. She agreed with my concerns about antibiotics that can cause neuropathy or muscle/tendon/joint problems. The only thing is, this one is only IV, so when I go home a visiting nurse or my DH will have to inject it through my port once a day. How will my skin survive four weeks of being accessed and taped? And I suspect they will continue to withhold my chemo, which frightens me. My onc gets back tomorrow. I advocated for myself and am only hooked to the IV for infusions, then I get a flush and heparin lock. No way I could bear being tethered to the pole; that would have been torture, especially as the constant drip makes one have to get up and use the bathroom constantly. The pain has diminished, though it is not gone.
0 -
Hugs , Pony . What an ordeal !
0 -
Rosie, lol, “young" and “healthy" are such relative terms, aren't they? So is “well". Look at hartrish here. She says she is doing well on Xeloda and then lists a bunch of side effects. And JFL talking about “some neuropathy and a bit of fatigue" on navelbine. That's why we all get one of Grannax2's gold “G for GRIT" pins. Nicole, any explanation for the swelling? You did not have any breast or lymph node surgery, did you? I had some odd ankle swelling a couple times recently. No real explanation except maybe hot weather and not enough moving around. Gumdoctor, I'm glad tumor board will discuss your case. Please keep us updated. Yvette, may navelbine treat you well. Have you found the navelbine thread? Leftfoot, scary times. I am very hopeful that neratinib will work everywhere for you.
0 -
ShetlandPony...I am sorry to hear you are in the hospital and dealing with everything! I just had my bile duct stent placed on 9/16. I worry about the titanium metal being in my body as I have allergies to cobalt and nickel. In 2015 I had one infection after another for months with my tissue expander. I had so many rounds of harsh antibiotics only for it to come back. Finally after 6 months during a hospitalization, I had vancomycin which damaged my veins. The cultures showed I never had an infection. I had my tissue expander slightly prematurely removed and a silicone implant placed. I never had any troubles again with infection. I strongly believe it was the metal in the tissue expander that caused the reactions and infections. I know the metal stent will stay in place longer than the plastic ones.
Did you fully heal after your bile stent placement procedure? I’m very slowly on the mend & following an anti reflux diet and not able to eat much. It makes the abdominal pain worse. I sympathize with you especially the thought of being tethered to an IV pole. 😢
0 -
bbpie, I do hope these infections and hospitalizations are behind you now, and your stent will behave well for you! Can the docs tell you exactly why you still have abdominal pain? Hmm, I see it has only been two weeks. I had pain in the stent area for a while. It seemed to help when I lengthened the time between dinner and bed, and now I begin my night’s sleep on a wedge. I try to avoid eating a lot of fat at once. My stent appears to be doing a good job. But it is plastic, temporary, and must be removed or replaced next month. I feel I need to build up my strength for that procedure, but how can I under the circumstances?
0 -
Shetland, I’m so sorry to read about your situation. Hospitals scare the living daylights out of me. I hope you get the care you need and are released soon. My mind and heart are with you
0
