How are people with liver mets doing?
Comments
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Sandi- Wishing the best for you. Hear that progression is a gut punch. Keep posting so we know how you are doing. Hugs.
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Sandibeach5- sounds like you have a great plan in place for that darn progression! It’s never easy with this disease😞 You inspireme to be hopeful in my situation.....Thank you! I love that your tumor markers were a helpful indication. I will be getting my lab results soon hopefully, as I just got back from my blood draws.
Is the G360 blood test available at most hospitals? That is really exciting to hear that you can have a less invasive biopsy with potreatment options
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All of you are just the best support system ever.
Thank you.
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Sandibeach, I am sorry to hear about your progression. Xeloda is a great drug. More tolerable than hormone therapy of any kind in my opinion, It will kick back those liver mets. It is somewhat common to have a rapid explosion when one becomes resistant to I/L based on my observation of others on BCO. Perhaps it is due to the aggressive pathway it uses. However, Xeloda can beat back the progression just as quickly and works well on aggressive BC. It worked miracles for me after my MAJOR Ibrance/Faslodex/Aromasin progression / explosion of liver mets in 3 months time 4 years ago
I have found once I have a plan and get the new treatment underway, I feel better about the progression and the fears ease up a bit. None of this is easy but we carry on and do our best.
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JFL, thank you for your insights based on your own experience. You are one amazing and resilient woman. You keep going, searching out effective treatments and helping us at the same time. I hope you are in a good place of health and treatment as we speak.
My MO, I think, was shocked at the recent MRI. I mean, just 3 months ago after Jan MRI, there was a tiny questionable area..so we were to wait, watch, rescan in 3 months. Nothing was seen on ultrasound or PETCT.
Fast forward 3 months, the multiple liver mets seen on MRI are not definitive measureable lesions. They are like scattered stars or spots thru out both lobes. Not sure if any can be biopsied. That decision is pending.
I, too, hope that Xeloda will kill those spots. But, realistically, I know there are always more to come.
Today, CT, bone scans for restaging. Then 1st dose of Xeloda after dinner.
JFL, did you progress while on Xeloda or once your liver mets were stable, did your MO change to antihormonal?
From reading here, most folks stay on Xeloda until progression. My MO wants to switch to Faslodex/Verzenio once stable and reuse Xeloda later.
S
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JFL..you just spoke to exactly what I been saying and hearing from woman on facebook...when Ibrance fails they had an explosion of mets...it kind of makes me glad I failed as fast as I did...from what I am seeing the longer someone is on it the worse the explosion when it fails....
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Hoping everyone does well with their current weapons in our cancer battle. It's good to have our arsenal, even though it is often a guess as to which weapon to use next.
Most of you know that I am on my 4th line plus a round of Y-90 in less than a year from reoccurrence. I was supposed to get my regular pet scan and abdomen MRI next week to check on my liver mets but Covid-19 is keeping me from traveling to MDACC. I re-scheduled for middle of next month, but don't know about traveling even then. Afinitor is keeping my WBC & ANC low, plus I have low IGG and Lymphadema making me very vulnerable to any infection
I will have my scans here in Alabama next month if traveling is prohibited. But I was also trying to qualify for a clinical trial in Houston at a different facility.
The weird thing is that avoiding the virus has more of my attention than my cancer (besides recovering from my recent oral surgery). My hubby is such a dear and follows very strict protocol when he comes home with groceries. I have been out only to doctors and bloodwork checks. I am blessed that my cancer clinic is still operating well.
Hoping my current weapon is working in this war. I know the Y-90 helped
Blessings to All
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despite staying in and being very caresuk I was just tested for the corvid virus yesterday after 2 days of high unexpected fevers. I should get results tomorrow. My chest x ray was great so that’s good.
Stay safe everyone.
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left foot forward
Prayers
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Fingers crossed, Leftfoot.
SandyBeach, I stayed on Xeloda for 14 or so months until it failed. I haven't heard of people stopping it while it is working and tolerable in order to shift to another medication. I seem to be doing well now. I have been on Gemzar and the COC protocol for 5 months. No scans yet but tumor markers and liver enzymes have continued to trend down. Not sure when I can get a scan due to COVID.
Nicole, I agree with what you mentioned about the Ibrance explosion phenomenon and that it may be a bigger explosion after working well for a good chunk of time.
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JFL
I am heartened to read that you have made it for 4 more years after a mets progression of the liver, and are doing well now. I had been doing okay but a few months ago, while on Ibrance/Letrozole they found liver mets, they switched me to just Tamoxifen, but that didn't help and more lesions have shown up.
Now I am just starting Faslodex. I am scared. Tonight I started stressing and worrying about dying. As long as I didn't have progression and things were stable I felt I had a few more years but the last time I saw my doctor she spoke of a much more limited time frame.
I have mets in the lymph nodes behind my pectoral muscle and in the liver, and to date they have not been able to do any radiation or other treatment for various reasons. I asked about Y90 at my last visit with my MO last month, but she said "we don't do that". The visit was so rushed I wasn't able to find out if she just meant at the cancer center I go to, or all of Ontario, or all of Canada. She said I would need to speak to one of the radiologists, so I need to start chasing down a radiologist with phone calls I guess.
I'm hoping the Faslodex has some effect. It seems most of you are on combos of things, and after Ibrance/Letrozole both my treatments have been single drug. Again, I don't know if that is just an Ontario thing (i.e. saving money). Worth asking my MO about, if I ever see her. They are really discouraging visits to the Cancer Hospital because of Covid, and at my last visit she said she was insure if she would be taking phone appointments (which I certainly think she should, it's not like she ever does a physical exam when I see her.
leftfoodforward, Hoping that your covid test is negative..fingers crossed.
Wishing you all well at this challenging time,
Amica
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Amica. I've been on Faslodex for six months. I was so surprised that my tumors responded to it. In my lung and chest mets, it's been my best TX ever. The y90 took care of my liver mets. It's an easy TX for me. No SE.
LFF. Prayers for you that you don't have COVID 19. Let us know.💞
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LFF I hope your Covid test is negative. Please keep us posted.
Seattle is one of the hotspots, just like NY and NJ
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Are you okay LFF?
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thankfully it came back negative. My life got easier.
No explanation fir the fever of 102+ fir 2 days but glad to know it’s not the virus.
I BBC am guessing it was the combo of low potassium, low hemoglobin, treatment Sr, stress of 4 kid home and crisis schooling, me Online teaching. Altogether it was too much for me.,
mice bern fever free the last few days and am feeling better just tired. So recovering.,
thsnks for asking.0 -
leftfootforward ---yay! glad to hear it was negative. I hope you get some more rest and continue to feel better
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Grannax2 --------- I am so pleased for you that you have had encouraging results! and that the Y90 did a good job on your liver mets. I need to inquire more about Y90. As I posted, my MO said "we don't do that procedure", so I need to find out where it might be done in Ontario.
So far I found my second Faslodex treatment easier to bear than the first one, less aches and pains, except the injection site area which remains quite sore, and less sick feeling, than with the first one.. I am hoping that the body adapts to the treatment and that this trend will continue.
I did have a visiting nurse in to give the shot and was concerned about his lack of screening questions for the virus. I mean, he didn't even ask if I had a fever. I actually called our regional Health Network who contracts for the visiting nurses to ask them if the visiting nurses are screening for the virus. They assured me that the nurses are, but all I know is that my nurse didn't do a screening.
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LFF. So thankful you are negative. PTL. Now, if you could find one area of your life, your multiple jobs, etc, that someone could help you with. I simply don't know how you are managing all that. It certainly sounds like too much.
Amica Thanks. When you research Interventional Radiologist be sure to find out how familiar they are with y90. Don't bother researching regular radiologists, it has to be an IR. Hope you find out there's one nearby.💞
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Hi was reading on the American Cancer Society website and found this comment and it greatly disturbed me. My MO from the beginning said there were many choices to keep the cancer mets killed or quiet. So that last sentence just pissed me off, cold, damn cold.
"Progression while being treated with chemotherapy
If the cancer is no longer responding to one chemo regimen, trying another may be helpful. Many different drugs and combinations can be used to treat breast cancer. However, each time a cancer progresses during treatment, it becomes less likely that further treatment will have an effect."
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I have seen that kind of statement, Sandi. However, I have also seen statements that persons who respond well to one medication are likely to respond well to the next. The fact you did so well so long on Ibrance is a good sign.
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Thanks Grannax2!That's helpful. I didn't even realize that Y90 would need an Interventional Radiologist although that makes total sense. I'll start with the radiologist that my MO told me to phone to find out more about Y90, I'm not sure what type he is but he can lead me in the right direction. I only just started with the Faslodex, and boy is my upper butt area sore! I also have a big bruise below the injection site on one side. Oh well. As long as the medication is doing its job!
I still remember you from the Ibrance board, especially your absolutely wonderful fashion show pic. I often read the Ibrance thread while I was on Ibrance (which was only for a little over a year), but didn't post much.
Take care,
Amica
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(cross posted in xeloda thread) Hi everyone. Hope that you all are managing OK in this bizarre new world we are living in. I am hoping that some of you may be able to shed some light or share experiences with me.
I am on xeloda on clinical trial (standard of care arm). Last week my labs showed my bili elevated at the end of my second cycle of xeloda. We reran labs this week, at the end of my week off and bili was even more elevated. My CT shows bones stable and only mild progression in the liver. Doctors are concerned that the bili levels are due to disease blocking small bile ducts (as the CT did not show a bile duct obstruction or other explanation for the elevated bili). Curious have others have experienced this with xeloda, even at the end of their week off?
NicoleRod - I seem to remember you had posted about elevated bili levels on xeloda, but perhaps I am mistaken.
Thanks in advance.
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So my GOOD NEWS is that I just had scans and so far my onc has this brief but wonderful note: “COMPLETE RESOLUTION OF LIVER LESION”!
Sandi, I agree with JFL that your having done well for so long on Ibrance is a good sign. Those general ACS statements do not necessarily apply to you. Look at my stats which I recently updated. For stage iv I have been on seven treatments. Four of them worked, three of them did not. When Xeloda failed I tried two other chemos and they did not work. Yikes. But the treatment after that is working! It looks like I am three times NEAD. A happy day for me.
I hope everyone here who needs good news will get it soon.
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Shetlandpony!!!! There is nothing better then to hear good news from others.
You just made my day.
S
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Shetland,
Such great news for you. I am really happy that the neratinib is doing the trick. You have seemed very positive in you latest posts, so it's not just physical -- it's mental as well, and that's great. Woo hoo!
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Sandi,
I saw your message about the ACS comments. Frankly, I used to look at ACS but I don't find their information that up to date, and it definitely doesn't even touch what we've got going on.
I was on letrozole alone, NEAD, from 2006-2019. In a consult a few months before I went on I/F, I specifically asked my MO whether, if I had to shift drugs, the fact that I was on letrozole so long was a good sign. She enthusiastically said yes -- that their observation is that if one drug works for a long time, they expect that there are others that will do the same. So -- keep the faith!
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Yay Shetland!
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Great news, Shetland!!!
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All right, Shetland !!!!! Thank God!!!! Hugs.
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Shetland. Happy Dance for you. Resolution of liver mets is my new favorite phrase. It feels good doesn't it? Yay for us.
Amica. Thank you. Yes, I've modeled 3 times now. Dallas, NYC and Dallas again in November. It was fun and I met new friends each time I'll try to find a few pics to post here.💞
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