How are people with liver mets doing?
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Alissa, I’m glad to hear you have options too! And, yay! For a year on Xeloda!
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KC1010-I will see my MO on Friday. I have not seen him since the consults with the IRs. We'll talk things over, but one of the IRs said it would be OK to continue on the Xeloda. Perhaps my MO will recommend a break? I'll keep you posted. Best, MJH
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Grannax2 - What is an IR? Yeah she had no clue what Y90 was.
Cure-ious - thank you for that information. I will definitely bring it with me for my next appointment on April 16.
What is TASE?
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kaylynne. IR is interventional radiologist. Not all of them do y90, so you have to see if you can find one that specializes in it. You could Google SIRT to see if theres anyone in OKC. That's kinda like the brand name for the type of spheres they use.
I've never had TACE but it's a similar procedure only they use chemotherapy inside the the liver to try and kill the tumors.
Maybe there's no one in OKC who is doing it. That does not seem possible. It should be pretty easy to find out. 💞
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no progression in organs ( big sigh of relief) I thought for sure my liver was compromised. They found a slight progression in intensity in the bones. MO feels afinitor is working because I have only couple of mutations and the AKT should respond to it if taken properly
She's recommending a slight increase to 7.5 mg and that I take afinitor everyday instead whenever I feel like it....she said she has clients that have done well for yeeearrrsss...but I stop taking it only because I needto clear my body from the SE...
Oh....my MO is leaving MSKCC, she will be going to work for a pharmaceutical company. She has introduced me to my next MO, an expert in genomics, and although to qualify for immunotherapy trials I need to have a measurable tumor ( bones apparently don't count) they will both ensure that I will get on the right one. Researchers at MSKCC are also working on agents to induce a lymphocyte response in MBC, so that's good. They both said getting on the right trial could happen even before switching to X.
What should this cat do? I instinctively don't like afinitor, but my MO's care has made a big difference since I showed up at her office so sick and broken up...
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Miaomix - It's good to have someone around doing well on Afinitor. It's a complex and individual question whether it is right for you. Given that you have two good docs looking for a trial for you at MSKCC, it's reasonable to stick with Afinitor until that comes through. It's a personal gut decision. Very interested in any trials they recommend.
>Z<
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I think that's the right course myself....Z, got to give these MO's the benefit of the doubt with afinitor.
they are going to check on SE every two weeks now and would switch me if The SE are unbearable
What I find really weird, but they didn't comment on it, are my cancer markers. The ca 125 and the 13 and change are still twice as high as they were on ibrance. They skyrocketed when I changed TX andaven't dropped much on three months of Tamoxifen and Everolimus.... yet I have no pain or any of the symptoms I used to have a year ago when they were that high....
the mystery of MBC I guess...
has anyone else experienced this phenomenon and what could it mean?
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So, I did not get good news after my 2nd cycle of Xeloda...my cancer has progressed in my liver once again. Since this is my 6th line of treatment since my original stage II diagnosis, and nothing has worked to this point, my MO feels there’s no point of moving to any other chemo. My cancer has too many mutations, and another chemo will prove to have no efficacy. This is a very surreal time for me because I have always felt great, other than some liver pain once in a while. It’s crazy to think that the cancer is going crazy in my body, and I have no symptoms.
I told my MO that I’ve been in touch with an IR, Dr. Lewandowski, and she wants to try the immunotherapy, Opdivo, in conjunction with the localized treatment. It’s a Hail Mary, but why can’t I be that ONE that has success, right? I’m hoping to see the IR tomorrow to get the ball rolling, and my MO is getting the ball rolling with BMS (pharma) to get compassionate use approved on Opdivo.
I know there are others waiting on results...I pray we hear some good news.
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I like your plan, KC. I know how you feel, except I am not a grounded and clear thinking as you are. I have a friend getting a miraculous response from Opdivo. Do you have a BRCA mutation? Interested in the specifics of your local treatment and everything about what you do and how it goes. I am following in your footsteps as are many here.
>Z<
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Z - I do not have the BRCA mutation, but have the Chek2. Unfortunately, the IR can’t see me until next Monday. I’m going to stay on X for one more cycle (14 days on, 7 off). I don’t want to be on nothing for too long. My TM’s doubled from 400+ to 800+ after the first cycle of X, and they were in the 900’s today. So, the trajectory has slowed, and I’m thinking/praying there’s a small chance that the progression could be flare. Staying on X for one more cycle won’t hurt, and maybe, by some miracle, we’ll find that it’s working after all...
Trust me, I am not as grounded as I appear...I have a 5 year old daughter (soon to be 6) that I need to put on a good face for. We have not told her about my cancer, but she knows something is going on. Yesterday, she said she wants to be a doctor when she grows up so she can help mommy. She knows more than we realize.We need to have the conversation with her soon.
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Z - it also means the world to me that you like my plan. I always look to you for guidance and suggestions on what to do, and if you feel like it’s a good plan, it gives me hope. I’ll keep everyone posted on how this all proceeds.
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KC1010 - I definitely feel for you. I will finish my second cycle of Xeloda on Wednesday, blood test on Friday the 13th and onc visit on 16th to see where we are. This is my fourth chemo since diagnosis April 2017. I agree that you are doing all the right things and it appears you have doctors that are truly involved and care about your treatment.
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I have seen tumor marker flares on xeloda. Take care before switching. I am opposed to switching treatment based on TMs. They do flare. It's not so common that you can assume it is a flare, but common enough you need to make sure. Please scan before ditching xeloda.
We can't have you skipping working treatments. I am sure Dr. Daughter is with me on that.
In my experience they absorb only what they can ... in a healthy way. Give her enough info to ask questions. Answer the questions truthfully. And thats it. Let her know what she wants to know but don't push her past that. It may not be much.
Z
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thanks for the advice on DD...I agree with you—I don't want to over do it.
I had a CT scan this past Friday, and my tumors did grow pretty significantly...just praying it's that they are breaking up, so looking bigger. One can hope, right?
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the most concerning thing to me is that my MO doesn’t feel that any of the other Chemos will knock back my cancer. I thought I had some in my arsenal...Abraxane, Doxil, Halaven to name a few. It was a huge blow to hear that these are no longer an option.
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KC1010 - I'm sorry. Nobody wants that kind of news. I hope Opdivo works for you.
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KC - That is weird ... doxil, for example, is quite different. And I know people who have done multiple taxanes. I'd be interested in his/her logic. I would also get a second opinion. Taking a break and trying something like opdivo is smart ... but the chemos should be on the table, i think.
Goodness. I would not want to hear any of this. But also it doesn't sound correct ...
>Z<
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KC - I agree with Z that chemo should be on the table. In the worst case scenario also, each chemo will buy you time that you can spend with your precious child.
Inwouks totally support your decision about opdivo. In my opinion no one really know she when and for which patients, immunotherapy works and when it doesn’t not. So go for it and best of luck.
Have you looked around for any clinical trials
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My MO's thinking about no more chemo is that none of the treatments have worked to this date...more chemo would just be more toxic. In her opinion, chemo is not buying me more time. I have an aggressive cancer that only a small % get, so there is very little research/studies because there are so few of us out there.
I have a 2nd opinion lined up at NW on 4/24...this doc is supposed to be one of the best, so I’m looking forward to hearing what he has to say, and if there are any trials that would be right for me.
KayLynne - wishing you the best this week!
Thanks, all, for your guidance and support.
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KC - It's all complicated and individual. You are making great decisions. You are questioning the right things. Please keep us posted as what you learn and what you choose to do.
>Z<
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I am sorry for all who are going through difficult news and decisions at this time. Cancer is so devious in its ways of mutations and trying to defeat the treatments.
I am fortunate for now in getting good results on my 7 month MRI’s and CT. The liver cancer has shrunk though very slightly and nothing has appeared on my chest CT or pelvic MRI. So I am focused on doing whatever travel and other activities I can while on this treatment with manageable SE’s. Trying to have a positive outlook though cautious because I developed the ESR1 mutation and AI resistance within 2 years of starting anastrozole.
Wishing the best for all in this group.0 -
Liwi - congrats on the good results! We need continued good news—let’s keep it coming!
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KC as others have said I would definitely get a scan to determine progression and not rely solely on markers. Also I would definitey keep chemo as an option too. No all chemos are as toxic as you would imagine. Personally I found Abraxane relatively easy and it did some good work. Second opinions all the way. I have a 7 year old who has no clue what's going on and has not suspected anything. It's hard I know but I will eventually have to have that conversation.
I've just started Xoleda for my diffuse liver mets. I was off treatment for about 6-7 weeks between biopsys etc In which time my liver mets have worsened according to my new baseline scan. Let's hope I have some success on X.
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Liwi, wonderful news on your scan!
KC, your MOs opinion must have been a punch in the gut. It seems too soon to do a scan after 2 cycles of X. I always thought each med needed a good 3 months because some take time to get going. Also, the CT doesn't show whether the mets are active or not. If I went by CT only, my doctors would have thrown in the towel long ago and I would have believed them. At one time, my liver was 70% or so mets with no side effects. That was after my 1st line of treatment failed. I am now on my 5th line and my liver has been no where near that bad since then. On the Doxil thread, I just saw that for someone on Doxil, this has been her longest treatment at over a year - and she is 6 years into stage 4 and heavily pretreated, meaning past performance doesn't always tell you what future results will be. You are feeling great which is the most important part. Don't believe someone about “giving up" onan avenue if your gut doesn't tell you you are in the place your MO thinks you are.
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Lilly - I did have a scan this past Friday to determine progression. The leading tumor went from 2.8cm to 4.1cm. There are many more smaller lesions.My MO isn't even following my bone mets at this time, as the liver is a much bigger concern.
Wishing you lots of success on X...it does wonders for many...hope it does for you, too.
JFL - thanks for the advice. I also think it’s so soon to determine the efficacy of X...and was surprised she wanted to move on so quickly. It seems as if my MO moves on quickly with all of my treatments. Her specialty is in BC and Melanoma, and she’s seems to refer to her melanoma patients quite often, and not her BC patients. I’m thinking it might be time for a switch in MO’s...one that ismore focused on BC.
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I had my Y90 mapping today. It went smoothly. I told them to lighten up on the sedative so I was awake and fully alert the whole time. What they gave me wore off completely 1 hour into the 3-hour procedure. I am still in recovery waiting for 6 hours to pass lying flat before I go home. My IR made a change of plans. Initially, he planned to do the left lobe first, then part of the right lobe in the second Y90. Now, he is doing the full right side next week, and postponed the second procedure to do the full left side for 2 months, given the volume of mets on the right side. I wasn’t surprised. I have a high volume of lesions, inumerable small mets, on the right side but only a small-moderately sized area of those are mildly
metabolically active right now. On the left side, there is a moderately sized active area with a higher SUV uptake but, overall, less lesions.0 -
JFL -glad the mapping went well—hoping the Y90 knocks those suckers out!!
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Thanks, KC!
The doctor said my tumors are very vascular, and sucking up the arterial pathways in a preferential manner - my tumors are high jacking all of the arterial blood supply - which is good for Y90 purposes, maybe not for everything else though
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KC1010-this may be a silly suggestion, but were you ever on Fulvestrant? Glad you are staying on the Xeloda for another cycle just to check if it is in fact working. Best, MJH
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