How are people with liver mets doing?
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Hi BevJen,
Before I was diagnosed with liver mets I had pain underneath my right rib. It felt like a stitch that you get sometime when running. It got so bad that it was painful to breath. The pain was also in my right shoulder. My MO said that it was from the tumors rubbing against my diaphragm. I had extensive tumors throughout my liver. That was the only symptom I had.
Denise
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NicoleRod, SadiesServant..thank you.
I feel like I am being pulled in two directions and I don't have the luxury of time for 2nd opinion..mets growing fast.
I will do the mapping to see IR still thinks I am a good candidate. He said it is not the size of lesion, it is the volume of disease in liver that he would not do y90. The more we wait, the less opportunity to use Y90. He is contacting my MO.
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Oy Sandi. Bun fights between specialists is not what you need now! Hopefully they will get to the same page. So frustrating. Holding you in my pocket. Hugs. Pa
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ahh sandi that is so hard. is there any way you could get a taxane infusion and do y90 right before your next infusion? or do it somewhat in between infusions? that is what i am trying to do for my mom but with doxil and MO agreed. meeting with IR in a week so we'll see
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my latest bloodwork shows two tumor markers are up by a bunch. They have never been a good indicator of my disease status but even my ZmZo said my CT/PET scan will be moved up if my brain MRI is ok at the end of June. I can’t catch a break.
Fuck cancer.
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LFF, maybe that is good that those markers have never been a good indicatot.
You need a mini vacation. Can that happen? Just to get away. Between work, your kids, graduations..whew.
I am glad you are being watched, esp with potentially moving up the scan. You have not had a rest from this..you have to be mentally and physically exhausted.
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D37 I had this pain after my Y90 stitch like from running...for 4 months...I think it was the die off though...but my tumor was near the colon wall..but I did have 2 high up behind the upper ribs that had be cryoblated a year prior she said they had uptake but somehow there was an artery attached that they didn't know about and the Y90 got them too and killed those suckers!!!
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welcome mia_milion
As you can see this board is very busy. Ibrance (cdk 4/6 drug) plus an AI is a recommended first line metastatic treatment. Often there is great response for a long period but sometimes not.
I started with Verzenio and Faslodex. It did not work for me. So they tried chemo next for me. I hope you can find the next systemic treatment that works well for you.
Please consider local liver treatment and talk to a IR( interventional radiologist) for y-90 and other ablations AND/OR talk to a Radiation oncologist about SBRT (high dose targeted radiation) these procedures have helped me to whack-a-mole the tumors until I found a systemic treatment that worked.
Let us know how it goes for you. We care.
Dee
Cyber HUGS to all of you suffering. 🥰0 -
I had my first infusion of my 3rd cycle of Navelbine on Thursday. My MO decided I needed a transfusion so I’m having it today. My iron saturation is very low, too.
I’m hopeful that the transfusion will help me feel better this cycle. Last month was really hard on me. I’ve scheduled my scans for the end of June and will get results on July 8.
Sandi, I’m glad you are getting the mapping. You’ll know which direction to go after that.
Dee, I like your saying about our version of strong is not the same everyday.
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Long time lurker and finally joining the conversation. I've run through most of what's still on the treatment menu and currently holding steady with some liver improvement with 3 weeks on one week off taxol. Bone Mets galore but only slight progression over the years. Tired, cranky, feet like bricks. Fuzzy cotton head. Oh, forgot to mention SBRT in signature. Everything works for awhile. The latest kicker is my Covid antibody test came back negative. Here I was feeling my Cheerios only to find out that the vaccine gave me absolutely no immunity.
Enough about me. I've been following you all and hope we can all hang on as we live with all the pain, uncertainty,and ups and downs. Here's to finding ways to rebound and live as well as we can for as long as we can
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Thank you Teedoff. The support on this site is wonderful; celebrating successes, comforting when progressing.
My next chemo probably will be weekly Taxol..
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Can someone clearly define what is meant by "diffuse" liver mets?
I should know..but do not.
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Hi Teed...glad you posted!
Grannax were your numbers low from the Eribulin and carried over or is just from this new chemo?
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Nicole and Sandi, thanks for your welcome words. The posts on this thread gave me the comfort level to participate.
Nicole, you continue to be a trooper. I have admired your concern for others at the same time you have been dealing with almost constant pain.
Sandi, if you do begin Taxol, it started working for me right away and made the side effects more doable since I knew it was worth it. You actually have around two energetic days before the premed steroid wears off. Downside is the trade off of staying awake most of the night. A really good book helps until you finally nod off. Taxol side effects are very predictable for almost everyone. There used to be a thread about taxol for mets. It has been inactive for awhile but very informative and encouraging.
Shared experiences are so helpful. Only fellow travelers on this path can truly understand.
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Teedoff- there is some debate as to whether the antibody test are accurate. Look up May 19th FDA.Gov on antibody testing
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I really appreciate you pointing me to this information. After reading the FDA's current thinking, I am far less “down in the dumps" about my negative antibody test. I will continue to take regular precautions and wear a mask when appropriate. You made my day
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looking for help and advice. i think my mom has ascites- she's been complaining about feeling more full/bloated than usual and said fluid is in there. she has slept more than usual both today and yesterday. is this the end? should i take her to the ER tomorrow? hospice? should i still try IR to see if they can do y90 or cryoablation? help this has been an extremely rapid progression from NED and i don't know what to do
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Dear MCbookair2018, what do you oncologists say? I never say "this is the end" - there's always something that can be done, in my humble opinion:/
Dear Bliss, how have you been, what is your situation?
Hugs to everyone,
Saulius
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Anyone heard from Bliss???
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Nicolerod. I stay low with most chemo but with this one, Navelbine, it’s just gotten lower and lower each TX. My other values were lower too. My bone marrow is definitely having a lot of trouble keeping up. I thought cut off for transfusion was HGB was 7 but she said 8. I’m sure she’s looking at other symptoms too. Like rapid HR, dizziness etc.
So I had my one unit of blood yesterday. It does feel like I have more energy and my brain is working better this morning. It needs to. I have a busy week. Chemo on Thursday. Neupogen shots on Friday Saturday and Sunday. I asked about Neulasta patches. Nope not on this drug because of it being 3 on one off cycle.
Got my scans scheduled for off week but I won’t know results until July 8
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Grannex- transfusions make a world of difference. I however at 8. The difference between 8 and 10 is crazy. I hope you feel stronger soon.
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SandiBeach57: My wife has both discrete tumors and diffuse mets in her liver. Diffuse means the cancer is spread out, or "peppered" through the tissue, as opposed to being in defined tumors. On a scan it can look like cirrhosis.
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SandiBeach - diffuse means it's little blobs all over, widespread, like buckshot, rather than one or more solid, well defined masses.
macbookair - I'd get an appointment today with the oncologist. They should advise on next steps. Ascites can be drained & there are even drainage systems that patients can use at home. You need your medical team monitoring her closely.
granna - hope your counts bounce back and stay up. This one seems to be really hitting you hard. Take care and rest as much as you can. Are you able to eat well? Need to supply the body with the building blocks to rebuild...
bliss - if you're reading, I'm thinking of you.
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Macbookair2: If you suspect ascites, take her somewhere they can use ultrasound to diagnose it. Forget about the tap tap on the belly method. It is often inaccurate. Aside from an MRI, ultrasound is the most accurate and convenient way to spot fluid. X-ray, no. The can do a paracentesis, where they insert a needle in a singe spot and drain a lot of it. If it continues, a tube can be inserted so you can drain it at home (with a little training). Diuretics can help slow the accumulation. There are two they use in tandem to help cancel out side effects. Also, if blood clots are causing hepatic hypertension, a heparin based blood thinner can be used to reduce the formation of new clots. When they do a draining, they can analyse the fluid to determine whether there are cancer cells in the fluid or not. That gives them some information about the nature of the ascites. If the ascites is caused by hepatic hypertension, they need to watch out for varices that can form and bleed in the esophagus and other area where the blood backs up.
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Update Still stable disease! 8 weeks until next scan and plan. 🙌🏻🎉🎀 I’m so grateful for a drug that is halting progression.
One tumor in left lobe is 5mm smaller. The oblong tumor in the right lobe is 3 mm larger in the smaller dimension. So great news considering before this drug they were both growing fairly fast.
Blood work is pretty good. Mag is finally staying in the normal range. Slightly low wbc, RBC, platelets and ANC but liver enzymes are absolutely normal on the drug. Whooohooo!
The PA said I need to enjoy the good report!
Dee
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CONGRATS ALABAMADEE !!!!!! Always good to read good news.
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AlabamaDee, that is excellent news! So glad this trial drug is working well!
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Wow Dee! Is this the CK2/4/6 trial with your ESRI mutation?
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Husband and Moth..thank you for the clarification. Now I need to research if diffuse masses (mine are 3cm, 7cm, 10cm plus micromets) and are high grade, if Y90 will be best next choice of tx
The reason why I ponder this is when tx fails, my aggressive liver mets grow fast. They cropped while I was healing from a successful SBRT for a single liver lesion.
Tentatively, I start Taxol June 22. If F1 says >10 tumor burden, then plan is Abraxane and immunotherapy.
Decisions...ugh.
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Nicole,
Have you been on Trodelvy (Sacituzumab Govitecan)? My MO has been giving it to a lot of her patients and every single one has responded.
I know you didn't want to debate but you still have other treatment options including clinical trials.
I care a lot about you even though we have never met in person. If you ever want to talk, send me a PM and I'll give you my phone number.
Big hugs, Susan
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