How are people with liver mets doing?
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Help! I got a conflicting report from my MO. She was very honest and said she didn't know what to make of all this, never seen it happen this way before. I leave today on my trip and I'm still not packed so this will be short.
She said it's up to me whether to take AA or Ibrance. But she thinks I will regret it if I go back on Ibrance and on the next scan my liver has multiple mets. The I R told me the MRI was negative and the 2 cm, 5.1 uptake on PET didn't show up on MRI. He also said there are 2 hot spots on PET. I have my MRI report now. It shows four tiny spots in my left lobe suspicious for metastasis. They are between 6 and 8mm each. He said they might be just scar tissue.
What do I do? Now I know that I have six lesions in my liver that may or may not be mets. I think my MO thinks they are and doesn't want to take chances. I think the IR is mainly saying that there's nothing he can zap because the two scans to do not correlate.
The good news is that I don't have to decide until the 28th. I hope I can put it aside and not dwell on it too much on my vacation. But, my brain is not good at compartmentalizing. Especially in regard to cancer! I am going to have fun in spite of my CANCER. It will not ruin my trip. I am still doing a happy dance that they didn't find an explosion of mets. I'm counting my blessings about that for sure.
Any and all advice is appreciated.💞
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Grannax, I feel for you. It certainly is somewhat “backward” to have something show up on a PET but not an MRI. It usually happens the other way around. Is this the IR that did your Y90? I wonder it the small remnants are scar tissue from the Y90. Regardless, have a fabulous time on your trip and I hope you can enjoy yourself despite feeling some worry. Look at it this way, your vaca was timed perfectly to let you step away from the hustle and bustle of daily life to let your mind settle and figure out the best next step. Sometimes it takes a break from thinking about it to come to the best decision. Thinking of you.0
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Grannax, Why is everything so complicated?? First of all, go on your vacation and enjoy every minute of it. Worrying will not help, but the vacation will be good for your soul and your spirit.
Here are some steps you can take.
1. It sounds like it would be a good idea to get a second opinion. Many centers will provide appointments relatively quickly. A fresh perspective by a different MO could help clarify things for you.
2. I have read that MRIs give the best detail of the liver, so I would be inclined to think that its results are the most definitive. Is there another IR or radiologist who can review the results? MOs are good at what they do, but they are not experts at interpreting MRIs.
3. You could go back on Ibrance and leterozole and rescan to see if those tiny "things" have changed. It must be several weeks already since your last scans. See where things stand 2 1/2 months from now. Yes, you are taking a chance that they will grow, but right now you are on no treatment. Maybe there will be no change or even shrinking after the next few months. In that case, there will be no need to change, and AA will still be there for you later, if you need it. The down side of this, of course, is that you could see progression. How would that make you feel? Would you be kicking yourself? You need to be willing to do this without second guessing yourself three months from now.
4. You can start on A/A now. I sense that you are reluctant to take that path, and I understand why. You could be changing treatments unnecessarily.
Of course, only you can make this decision. I tend to take the conservative approach, so I would go with #3, but that is just me. I know that I would not look back with regret if it didn't work out. I am praying that you find the decisio that is right for you. Put this in God's hands.
Enjoy your vacation, and don't forget to post pictures for us.
Hugs and prayers from, Lynne
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GrannaX- Try to enjoy your vacation, I have no idea what to advize as I am in a worse sitation. still trying to stabilze me and find some meds that work on my liver mets. I have been put on Xeloda pills and Navelbine IV. It´s supposed to work on the liver mets. I can only hope and pray. But good luck. Are you supposed to make this choice or do you leave it up to your onc.?? They should have the last word after explaining why they advize this therapy, I mean thay are the doctors that´s what we are trusting and paying for is their knowledge and expertice.
Hugs and have a great trip!
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Grannax, what a conundrum! I completely agree with Lynne on this.
However, you might be able to go to A/A to get things under control and then go back to I/L for maintenance, or go to Verzenio(sp). Like Lynne said, whatever you decide will be what is right for you! I don't look back, I only look forward. I refuse to do the coulda, shoulda merry go round! My mantra is, I made the best decision based on the information I had at the time. That's it! No second guessing!
Now, please go enjoy every moment of your vacation and make sure to takes lots of pictures to share!
Hugs and prayers,
Claudia
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Grannax,
Pet and Mri’s do not correlate with each other, Mri’s Are the best interpretation for the liver. The IR doc could scan within 2 months to get a definitive result. I’ve been told by IR that the scans are quickly read, about 5 minutes per scan. IR requested a second reading by a radiologist doc who was familiar with breast mets in liver after I sat with him going over the scans and a addendum was added for clarification.
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Grannax, I certainly hope they get this figured out for you quickly! I think the waiting and not knowing are the worst things.
I'm still here in the hospital. Liver numbers are continuing to climb, including bilirubin. I received a dose of Taxol yesterday with the hope that it would start calming down the liver. What I didn't realized was the timeline for judgment. I figured I'd get a few doses and then they'd decide. No, the MO is looking at today's blood work and tomorrow's. It the numbers are still climbing, then.... well, that's it. Kaput. No more treatments. He and the consulting MO at Fox Chase are out of ideas, and I'm being sent home, probably with information about hospice care.
This morning's blood work came up with the liver numbers continuing to climb, particularly bilirubins. So I have one more shot. If they're not down tomorrow, it's lights off, curtains closed, exit stage left.
Part of me wants to go elsewhere, get more opinions, try more medicines, fight. Part of me is just tired. Tired of bad news, negative reports, painful procedures, each worse than the last. Is that giving up? Am I giving in too quickly? Or am I just being realistic? I'm really trying to hold on to hope for tomorrow's results, but... I haven't had a positive result in over a year.
I had to call my parents and my sister today with the news. I hated hearing them heartbroken. I'm ready to go Home.... they're not ready to let go. I know that's not my responsibility, and I also know they'll be fine. However... I hate being the cause of others' suffering. My goal in life has always been to make people laugh, so being the cause of their grief is really difficult.
Anyway, that's where things stand with me. It's all up to that one little number on my blood work.
And I'm remarkably okay with this.
PP
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PP, just sent you a PM. Don’t respond. I know what to pray for now. It’s difficult to fathom the speed in which this diagnosis is going. There must be SOMETHING that can be done!
You are not the author of your family’s grief. You didn’t cause this cancer. I know you don’t want them to hurt and be heartbroken, but that comes with the love you all have for one another.
How is your DH holding up?
Gentle hugs and strong prayers!
Barbara
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PP, I am continuing to pray for you, your family, and your medical team. I hope you see improvement in your bilirubin numbers. It must have been very difficult for you to tell your parents what is going on. Love is one of the greatest gifts we have in this life, and sometimes we forget that pain can accompany it. It hurts to see the suffering of those we love most, but that deep, unwavering love is worth it. You are not responsible for anyone's suffering. You are responsible for all the joy and laughter and touching moments you have shared. No matter what happens, you are not giving up. You have continued to ask all the right questions, seek the best treatment, and subjected yourself to all the recommended treatments and test. None of this is your fault. You remain in my thoughts, and I will continue to lift you up in prayer.
Hugs and prayers from, Lynne
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PP, I am really sorry about whats going on. I am not a doctor but I am pretty sure you cant just expect miracles from one and only infusion of Taxol.
That being said, I think its completely understandable why you are feeling the way you are. Maybe you can put the load of trying to find another opinion somewhere else onto your family. No matter how they are feeling right now, I am pretty positive they would do anything for you. In the meantime you can sort your emotions out and do what you really want to do but with a plan b in case it turns out you want to go on with treatments.
Hang in there, we all are rooting for you
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PP: I'm willing for the Taxol to work, which would surely take more than 2 days to do so. You must be exhausted with all this stress and pressure. Just having a porely liver will make you so tired. Have you had an ultrasound to check if you liver is blocked and so maybe a stent being able to help out? Thats what I did to show the blockages in my liver.
You will be in my thoughts.
Sarah
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Sarah,
I'll admit I was shocked to find out this morning that the window for success was 48 hours. I thought I'd at least get a couple doses. But maybe the numbers are just so catastrophically high that we're out of time.
Yes, they did tests to look for blocked ducts. There are none. So a stent won't help.
I think I'm just out of time, friends.
PP
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PP, I'm sorry to hear of the rising bilirubin levels, and praying the taxol kicks in and starts to make a difference. I cant think of anything to add to the thoughtful advice the others have said. I wish you peace
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PP- Have you tried Xeloda pills and Navelbine IV. I´m told it does wonders for liver mets, I just started on it my liver did not answer taxol. Navilbine in in the taxene family less toxic on the liver. I have no idea how it will work on me, but I just started. Good luck to you. I can only imagine how hurtful and scarry this is and any one of us could be next at any time. We are in this nasty situation together.
Hugs and love.
Raven
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Princess, I wish I knew what to say. Maybe there is comfort in accepting the inevitable and even with family around, it's a lonely road. I look at your sweet, young face and wish I could give you some of my time. Holding you and your family in my heart.
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Thanks for your advice, ladies. It's helped clear my mind. I'm leaning toward going back on Ibrance. My reasoning includes: If the area in PET did not show up on MRI, then it's probably not a met. I do know that MRI is the most definitive for liver mets. Next, because it's less than three months, end of October, to the repeat scans. That's not very long. Surely all Hell can't break loose in that short amount of of time? Third: I never wanted to be on AA in the first place! I'll take it when and if it's proven I have to.
How does that sound? Good reasoning? Again I'm still craving your words of wisdom.
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Grannax, I think your reasoning is valid. You have considered everything, and are making an informed decision.
P.P. You are on my mind today. I am sending you a virtual hug. We are all pulling for you.
Babs, By now you have probably started WBR. I have heard that it can cause fatigue, and I hope you are giving yourself some time to rest.
Hugs and prayers from, Lynne
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Je approve Grannax! Your logic is right on! No point changing Tx when MRI shows no progression. Pet results are affected by inflammation and infections that we might not even be aware of. nd let's face it, as in your case, our doctors surely can't explain the contrasting results or tell the difference between cancer and whatever else is going on. Also AA in my opinion is not worth rushing into. We have similar genetic profiles, and AA was considered targeted therapy, instead ittripled my cancer tumors while I was on it. There goes “ science” for you...
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This is an interesting case of a donor woman that had been found to have no cancer, yet all her various and unrelated beneficiaries were diagnosed and died from breast cancer, leaving the doctors dumbfounded. It just proves how much we still don't know about this dreadful disease.
Cancer Spreads from Organ Donor to 4 People in 'Extraordinary' CaseFrom Health, a Flipboard magazine by Live Science
It's well known that organ transplants can pass infectious diseases from donors to recipients in rare cases. But even more rarely,…
Read it on Flipboard
Read it on livescience.com
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PP, I am so sorry to hear how things are going. Your instincts are right that taxanes cannot be judged in a matter of days. Your counts might "flare" and temporarily increase because it is working (mine do when I start a new successful treatment) and it does take more than a few days for all chemos to work in all cases. Taxanes hit a specific step in the cell cycle and that step is not instantaneous. Is your MO a breast MO used to dealing with young metastatic patients? Your overall health as a young woman puts you in a position to be able to handle the treatments better, bounce back more quickly, and have a more significant response to treatment (our immune systems are higher when we are younger and aggressive cancers can respond more quickly - easy come, easy go, as they say). It saddens me that your MO is essentially writing you off, somewhat lazily, before you are ready to go. It is your decision in the end but it is hard to contemplate you are out of options. Getting a second opinion sounds exhausting but you always have the option of telling your MO that you would prefer to continue on Taxol for a while and see how it goes. If he disputes this, you can tell him to "humor you". If he disputes this, you may even request to be moved to another MO at the place where you are at. While you have to live with the result of his decision, he is going home at the end of the day to have dinner with his family and sleep well at night. (I had issues with my past MO not supporting what was best for me because of his own ego - and what I just said is what the psychologist at my cancer center told me (despite her being very close to my MO), which convinced me that I needed to do what was right for me with or without my MO's support.) It is your life and your body and I hope in my heart of hearts that things turn around for you. I recall over a year ago, Lita, another member of this forum, was in a position where she was told there was nothing more to do and recommended hospice and she was close to signing the papers (or may have signed them) and heading into hospice after the weekend. She changed her mind at the last minute, decided to proceed with treatment and is still here today.
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Miao, I read about that case of all of the donated organs causing cancer in the recipients. As shocking as it is that a donated liver could test negative and then transfer breast cancer, I was even more shocked that this happened with all the organs, including kidneys which don't often show up with breast cancer on our tests. The fact that recipients are required to take immune lowering drugs so their bodies don't reject the cancer does not help the matter.
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JfL. Yes, that case is puzzling crazy to say the least. It kind of confirms my worst suspicions.
I have a question: is it safe for us to supplement with ferrous sulphate to resolve the low hemoglobin levels? Has anyone tried to correct their anemia and fatigue. Any suggestions?
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Princess Pinchshion, sending love and strength and most of all prayers for you and your family. My heart goes out to You,
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Princess Pincushion,
I was reading your list of treatments. Is it true that you have never had a cytoxic chemotherapy before? I am shocked at your MO's weird window of efficacy for taxol. There is no way it could work that quickly, and to have your prognosis a settled deal seems cavalier. There are ways to support your liver in the next few weeks, with diet, hydration, sincere pooping, etc. Any nurse could tell you the handbook of tricks they use for liver support.
I sincerely hope you get a second opinion, or that you do as JFL suggests. The liver is remarkably adept at healing itself.
So please, press the buzzer and get the attending in there, and tell them that you want to continue Taxol for at least three weeks, depending on dosing. How are they dosing you?
If I am too vehement, please forgive me. I think some doctors have a switch that takes us from the viable category into the non-viable, and once they've activated that switch, they turn their brains off.
PS: I just happened to have a phone call with an Aunt who is a clinical trial nurse, and she thinks your MO might be a little precipitous. She wouldn't come out and jam on a doctor, but did feel more time was called for.
Jennifer
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Lynne
Yes I started WBR.and spine raduation. I’m not fatigued yet but I am very wobbly on my feet. My right foot is numb as is my rt buttock. I’m so used to being a strong person and now I’m really not. Very hard to accept!
Babs
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Babs so glad to hear from you. I know you are used to being strong, working full time, can do woman. Do you know what, you still are. It takes all those qualities to do what you are doing. But, I bet the dependence on others is hard for you. I'm not all sure I will have what takes to do do WBR, if it comes to that for me. I truly admire you.
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PP-thoughts and prayers go out to you during this difficult time.. May you find strength and courage with wisdom to make a decision and move forward. You have lots of friends here who care. Virtual hug to you.
Therese
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PP-I too think that a couple of days after Taxol treatment would show results, is too soon. I was on another taxane (Taxotere) for over a year. My oncologist has me get CT/bone scans every 3 months. So it wasn't checked for 3 months. Luckily, it did it's job. I'm not sure why, they are giving up, if your blood work isn't where they want it to be. I understand how you feel exhausted from all of this and can't decide whether to give up or get a second opinion. As for myself, I would get a second opinion. I get one, every time I change treatments (I'm on number 7). I go to Dana Farber in Boston for a second opinion. They usually match, but this last time, 5 totally different chemos from the 2 of them. I went with one of the Dana Farber dr's choices. It had me going into the office less than the others, and less side effects. I am so sorry for what you are going through. I will be praying for you. Hugs to you!
Grannax-Enjoy your vacation! I think you are making the right decision on staying on Ibrance. Hugs!
Lynne
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Princess Pincushion. Please let us know how you are doing. You sounded not ready to give up and I hope you haven't. You have been getting some loving input from those who have experienced similar situations. Any extra time we all have is precious..fight or have your loved ones fight for every second. We are listening and holding your virtual hand. Don't forget that.
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PP, hope things are looking better and that you and your family are in a more calm place.
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