How are people with liver mets doing?
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ShetlandPony, I’m so sorry you’re going through this. I had been thinking about you and wondering how you were doing. I had imagined your situation had stabilized....
I will pray that the situation changes for the better soon, so you can resume treatment. May you experience the relief and healing you need ASAP.
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ShetlandPony -
I so understand your quandry/catch-22. While not as serious as your situation, my 3 blood clots and liver infarcts have created a catch-22 type situation for me. Dealing with the extra challenges on top of our regular stresses is exhausting on top of the exhaustion and all the side effects...
All we can do is put one foot in front of the other...and look for some hope and some improvement...and not give in to that little quiet voice in our heads that suggest we stop fighting...
My faith keeps me going...but I have such very dark moments...you are not alone. Hoping tomorrow is a better day for you.
Gumdoctor
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Shetland, my heart aches hearing about your struggles. I hate how this disease can change so quickly. I hate the fears that come along with this awful disease. And I am sad to hear that you have had to miss dance, something that makes you happy. Thanks for sharing. It is hard to post not so good news. I know I find myself getting quiet when things get difficult. I don't want to bring others down, I guess. However, I and others on this thread appreciate you letting us know how you are doing and we will always be here, in your corner, to support you.
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Dear Funthing42, Shetland, sorry for what you go through. Nothing is lost yet. Do you have maybe will to go for the second opinion or to a place where someone would really care of you. Many people here changed centers and oncologists and they are doing really better... Saulius
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Shetland,
I am sorry to hear of your current troubles. I was so hopeful that things would have resolved somewhat by now. Years ago, when my favorite aunt had breast cancer, a friend created a needlepoint for her. She passed it along to me, and I look at it often. It says simply "One Day At A Time." I think that's good advice for all of us, but especially for you at this time. As GumDoctor says, one foot in front of the other. Do something today that makes you happy and distracts you from this awful disease.
Bev
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Shetland, I am holding you in my heart right now. I'm so sorry for this hell you're going through.
Katty
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funthing- I agree with BevJen's advise-- biopsy and testing to see if there are other treatments that may work for you. And also a 2nd opinion wouldn't hurt.
Gumdoctor and Shetland- My thoughts are with you both. I pray for you and all here on BCO. That you would have peace and comfort and calm as you make the next decisions. And that you would have reprieve from the symptoms you are fighting. I am blessed that I have been on the same treatment for almost 2 years and know that I will, at some point, be in your shoes as things progress. This is definitely not for the faint hearted. Hang on and continue to come here for the support we can give.
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Shetland- I am so sorry. Catch 22 suck and it’s completely understandable why you are depressed.
Is there a way to go cyber knife or gamma knife to the liver tumor that is causing your problem. That could help treat the reason you need the stents and let you take antibiotics? I have no idea if this is an option but if it was maybe you could catch a break. I am trying to thjj in no of a way to treat the liver tumor causing the problem without chemo that allows you to stay on antibiotics. I’m not a doctor and the location of said tumor might be an excluding factor. You might have already asked. I s AS m just trying to think of options.
So sorry you are in this cycle. Hoping that thee is an out and you find it soon.
Hugs
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Shetland,
Following up on LeftFoot above --Not sure if you are following the ringworm, etc. thread, but I posted something on there last evening about cryoablation and immunotherapy -- if I'm remembering correctly, at one time you were thinking of some IR intervention with the liver tumors. The article linked below talks about cryoablation and immunotherapy possibly being a good solution for metastatic patients. However, they will do the cryoablation alone anyway, if the situation is right. Nicole is going to do cryoablation at Hopkins next week; I've had microwave ablation there as well.
Anyway, if it's any help to you or others, here's the link:
https://www.frontiersin.org/articles/10.3389/fimmu...
Bev
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Awww Shetland, that's the pits. I was hoping the antibiotics would clear up the infection. When do you get the stents?
Yesterday's was sooo frustrating. I did get the PET but not the results, as I was assured I would. Nothing went as I thought, always surprises. I expected to have TX based on the results of my scan, but no. My counts were super good so she just said get chemo today. Uhhh What? Yes, both Gemzar and Carbo. That's not what she had told me before, I said. Then she couldn't find her notes on the computer. What?! They have a new system or something. Then, nurse said she will call you before you get chemo today. Nope that didn't happen, still know nothing about the PET. So, I get these two toxic drugs without the knowledge that they are working.
It had been a month since my last chemo, hospital for blood, two missed chemos because of low ANC now, this. I just was in shock that she treated me without the benefit of proof. I still cannot believe she would behave so unprofessional. Everything had been building up to this day and yet I know nothing. My family, my friends waiting to hear. Nothing.
So, I'm trying to rationalize. But, the patient should not be treated like I was because of a computer problem. This visit was was not a confidence booster. She was with me less than 5 minutes because she was late because of the computer problem. All my questions unanswered. Then she was flying down the hallway. Nurse seemed irritated with me. No expression on her face. Total disconnect.
I thought this doctor, this nurse were on my side. Don't feel like that, now. 💞
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Grannax- Totally unacceptable !!!!!! If I were you, I would definitely let the MO, nurse, and possibly administration know of my concerns. Totally unprofessional. Who gives a sh__ that the MO was behind due to the computer issues. YOU were her priority when she was with you. I just want to scream about how we are treated sometimes. I say this as I sit here anxious for my CT results---done Monday at noon. Almost 48 hours ago. But nothing compared to what you went thru--- taking harsh chemo and not knowing if it is really working. And not getting your questions answered.
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Grannax...That's outrageous! You have plenty of reasons to be upset...
I continue to go to MSK—regardless of the recent scandals— primarily because they are technologically extremely well organized, and I never feel rushed when I see all their various doctors and specialists. They are very generous with their time, but sadly, don't seem to have any different and new treatments to offer...
I hope the test results turn out to be great for you!
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Shetland, I've been worried about you, and am so sorry to hear of your complications. Now is a pretty rough time, no getting around it. I'm hoping a spark of good news comes your way, however small, to remind you that things can turn for the better quickly.
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Grannax, that is shocking and unprofessional and the nurse's lack of support when the doc was "too busy" is appalling. I hope you do make it clear just how distressing it was and hope this was a one-time eff up. Damn. So, did you get your infusion and/or your PET results yet?
Thinking of you,
Katty
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Shetland- I too have been thinking, wondering, worrying about how you are doing. This is a crummy deal and catch 22s are such a conundrum! Is there any way that they can drain the abscess? It is hard for antibiotics to penetrate a pocket of pus.
Part of the conundrum is that things can turn around so quickly - it makes it hard to figure out what to do sometimes. I am thinking about you.
Grannax- your experience is the very reason that we must know what is going on with us and make sure we get what we are supposed to. Challenge the wrong information- insist on a recheck. How anyone can blithely give you any treatment without knowing for sure this is correct is frightening.
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Thanks for your supporting words. I still know nothing.
I did just place a phone call to the nurse. Evidently, the computer problem is messing with all info. Nothing is updated on my portal. Even my appointment for next weeks infusion is not on there. The message I sent yesterday has not been read. This is Simmons Cancer Center in Dallas. It's our largest Cancer Center in N Texas.
Just a minnow in a big pond. Katty, I know how big MD A is, a zillion times bigger than UTSW, but it is usually organized. I felt a sense of community when I was there. I feel between a rock and a hard place, I have said I'm not changing MOs again. This is my last stop. You all know the stress of changing. I don't have the means or support to go to MD A.
So, I will stay here in spite of what happened yesterday. I do have my own knowledge and ability to self advocate. Before I said yes to my infusion of Gem/Carbo, I thought through the pros and cons. I decided that since the PET would probably not say NED, something was better than nothing. I did tell my infusion nurse, who told her charge nurse, who called my MO nurse. So, it's on record about my doubts, etc. I don't if that's an official complaint or not.💞
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That type of system failure is a chaotic nightmare for everyone...I'm so sorry you are caught in the middle of it right now, because so much is at stake and we don't need more uncertainty than we already have.
Hopefully, it will be up and running ASAP and you can regain your confidence in your doctor, medical team, and in the cancer center. You worked so hard to find the right doctor.
Xoxo
Katty
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Cross posting from Ibrance Thread also.
Ok, need some advise from the group.
My TM's have slowly, steadily increased over the last 4 months. Nothing major. But my MO has mentioned the increase and agreed it could be nothing or could be something. I had 3 month CT on Monday. Today (Thursday) still nothing in patient portal and no phone call. Appt scheduled with MO for next Monday. I was getting very anxious and want to have questions ready for MO, so I went to Medical Records and signed for a copy of the typed report.
"Slight increase in size of known left hepatic lobe metastatic lesion" . July's CT measured 7mm X 6mm and now 9mm X 11mm. The thing is last Oct 2018 CT states 11mm X 8mm.
Can the liver met shrink then grow again??
I always thought the measurements were computer driven, but was told once that each radiologist that reads the CT's measures the lesions and so there can be differences in the math based on the person reading the CT. Human factor.
So, do you think this is considered progression and would warrant change in treatment? Or should we keep things the same (Ibrance and Letrozole) and see next CT in 3 months? I don't want to move from I/L if it is really still working.
Thoughts.....
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Hi Candy...sorry that it is looking like progression. I can answer about liver mets shrinking and then growing. They did exactly that in my case. Aug they had all shrunk on I/L/Faslodex...then Oct 1 those same ones that had shrunk had now grew and I got a new one.
However I now if the numbers are close they say it could just depend on who is reading it? I do know that they feel more confident in saying it is definitely progression IF the same place and same person reads the film each time....but that's just what they said to me.
I am told that if some are stable and only some grow that could mean the drug is still working...but in my case again...ALL of them grew and there was a new one. (yes, even my 2 bone mets came back and grew).
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Candy, sorry to hear about the questionable scan. It seems like minor progression at most. It may still technically fall in the category of “stable”. I don’t know if it warrants change in treatment. Good question for your MO. Also, I agree, there could be user error. The CT (without contrast, at least) is not great for precision. Lesions show up as black and healthy liver tissue as dark gray. The radiologist compares it (visually) to your previous scans, which are displayed in series of horizontal image slices from the top of one’s liver as if you are looking down on it from above, to the bottom of your liver and vice versa, like how a film is put together through a series of still shots. There is a way to measure on the screen but there could be user error as I believe the radiologist sets and moves the measurement mechanism him/herself. Also, the radiologist can measure width and depth of the lesion in any given image slice but not height (it would be like trying to determine how tall someone is by looking down from above at the top of a person’s head). I review all of my scans with my DH who can access the scan himself in the hospital’s system. Not a perfect science by any means. Keep us posted on what your MO says.0
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JFL- I had forgotten that you said your DH can review your scans. Thank you for the explanation. Interesting.
My CT's are always with contrast- oral and IV contrast.
I will look to see if the same radiologist read last CT, and the previous ones.
So if Stable still or minimal progression, how much does lesion need to grow to be considered progression and warrant change in treatment??? Is there a certain number, say growth of ___ mm???
Edited to say---- If CT scans are questionable in accuracy, what scan is better for liver???
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I doubt so , candy...
I think it depends on MO, degree of certainty about progression , what your current meds are, what are other options, can one re-run histology tests, how many of other options, previous behavior of the tumour etc etc.. I think it is more art than science...If markers steadily went up and increase in size I guess it is a progression...
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Sandi: I have a Power Port - installed in April 2019. I like it for infusions but it wasn't used for the contrast dye in my PET scan. I am on the thin side so the port sticks up -- a lot - but most shirts and scarves can hide it. It only hurts when my cat invariably steps on when settling on my chest.
Shetland Pony: I am sorry for the turn of events. It saddens me that you cannot dance. I know the joy, peace and other good things that come with dancing. I hope treatments will resolve to the point where you can return to the things you love. Return to your garden. Live a lot more years with a good quality of life. This disease is so cruel.
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Candy....like others have already brought up...the small increase is in millimeters....and millimeters are very very small...and since the scans are not very precise...if I were in your shoes, I would chose to continue with the current tx and check on it again via MRI, since changing a treatment that might be still working would be a bigger mistake.
But, I wish you the best of luck with wherever decision you and your doctor make...
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Bad news today. PET results not good. My super stubborn liver mets didn’t respond to chemo. In fact they all grew and a new one showed up.
Next Thursday I see MO to discuss TX options. UGH. Again. The only thing they ever really responded to was y90s. So I sent my information to my very good IR. I don’t know if I’m a candidate again. Or for any other Of his procedures. He’ll get back to me soon.
I have a lot in both lobes. Plus some in lung and mediastinal lymph nodes.
I have no idea what my MO will suggest. Any ideas? I’m ER PR +. Targeted therapy x 2 failed, Xeloda and now Gem Carbo. I’m heavily pre treated and I’m ESR1 mutation on 2 genomic tests. AI not an option.
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Frisky- I tend to agree with not changing treatments yet if it is still working. If we do MRI, how does that work? I know one should compare MRI to MRI, CT to CT, PET to PET, etc. I have always done CT's only. So if we add MRI now do we do MRI in 3 months again to compare? OR if we do MRI now as just 1 time is that ok to see how the liver looks right now?
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Grannax- So sorry about your news. I don't know what to suggest. Kind of feel funny about my mm increase in size concerns. You do not deserve this.
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Grannax, I'm so sorry. I hope you hear back from your IR with some options. If that doesn't pan out, you might ask your MO to present your case to the tumor board and look into clinical trials .
Holding you in my heart tonight.
Katty
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Thank you all for your kind words, thoughts, and prayers, my friends. Especially as you all face your own troubles. I believe the antibiotic has taken care of the abscess as I can’t feel it now and the CT scan does not see it anymore. I am now recovering from endoscopy for stent exchange, biopsies, and ultrasound. Amazing what can be done through a tube. Leftfoot and BevJen, thank you for reminding me to bring up radiation therapy again. Saulius, I am at a good NCCN center, so at least I am not worried about my doctors’ expertise dealing with what my onc called “a complicated lobular lady”. Let’s hope we get some useful info out of the biopsy, but I doubt it.
Elderberry, my cats now know they are welcome on my lap, but not on my chest. Maybe you can convince yours.
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Candy...the MRI is the most precise tool they have, thus you and your doctors would have a clear idea about the real size of the problem...and although the output between machines will be different...ultimately, what you want to know is what's really going on in the liver.
If your lesions are confirmed to be so small, I'm not sure that changing TX would necessarily reduce them..but, you might be changing too soon an otherwise successful and easy Tx...
That's what I was thinking...
Grannax...I'm disturbed and saddened by the results of your pet...I hope they come up with a good plan! Big hug
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