How are people with liver mets doing?
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cure-ious...thank you for the heads up and reassurances....one detail I forgot to share is that they are increasing the dose based on the order of when a patient joins the trial...I was told I am to take 4 pills @ day....which seems a lot of medication to me. The maximum foreseeable dose is 5 pills.
Like you said, if it's too much I won't hesitate to let them know...125 was way too much ibrance for me, but I couldn't persuade my previous mo to prescribe less. I think that on 75 I could have still be doing well on ibrance.
I'll keep everyone updated on the developments....Friday I have to take four tests....it's an all day affair, and I'll be able to ask relevant questions that can illuminate and resolve some of our concerns. This trial started a month ago at MSK, so they should already know what to expect SE wise, but let’s not forget: more seems to be always the choice for our MOs....
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I was just reading about the Venetoclax trial- they never reached a maximum tolerated dose (ie, they got no horrible side effects) so they said they just stopped at 8 pills a day, because that seems to be "a lot of pills to keep track of" (I'm not even joking!!)
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well folks, I do declare, today I'm feeling fit like a fiddle. I can lift and use my right arm and my left leg without any problems, it's nothing short of miraculous, considering the amount of Lodacaine and fentanyl patches I was using without getting any relief. God bless that Miss Chen!
I'm also experimenting with half a dose of Korean red Ginseng for energy, since I got a green light from MSK. I was surprised by how delicious this concoction is, and I can see how it would be easy to drink the whole box....and then some...watch out I might turn into super Miao....
At times, I totally understand the need we all have to utterly disassociate from reality. We learn to disassociate early on, in order to survive the various forms of abuse and neglect of our infancy needs. Children that lack this ability, don't survive. It's a very important coping mechanism. The problem is that even after we're all grown up—and have more control of our lives—we find it hard to give up that numbing dissociative state. That's why psychotherapy is a very long and most of time useless process. It's very hard to wake people up when the psychotherapists are asleep themselves....but that's another story....
The movie The Matrix is a wonderful metaphor for this dissociative state. But now and then, like Neo soon found out, it's preferable—although very painful—to wake up in order to actually live. The alternative was to remain unconsciously attached to a machine while thinking you're walking about and eating a juicy steak, which is what one of the characters chose to do. And that's fine too..to each his own....nothing wrong with using whatever we have at our disposal to feel better about ourselves....free choice is such a wonderful concept, and positive thinking is a very powerful tool we can all use to heal ourselves
Many great poets and philosophers have attempted to make us aware of this situation, Plato beautifully stated that what changes is not real, but in my view, no one did it better than Shakespeare with Prospero's monologue at the end of The Tempest. Enjoy!
Prospero:
Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.0 -
Long time lurker, very infrequent poster. I am 15 1/2 years out from original diagnosis of invasive lobular cancer, ER/PR+, HER 2 -. Treated with TAC and radiation, and put on tamoxifen (I was premenopausal.) About 12 1/2 years ago, I had a small focus of BC cells found on my cervix during a routine gynecological exam. Had a complete hysterectomy and went on Letrozole, which I am still on. Tumor markers started to rise a year ago. No symptoms. Had not been imaged since 2008, but since rise in markers, which continued through this January (haven't had them taken since then), I've had 3 diagnostic CTs, 3 nuclear skeletal scans, 2 PET/CTs, and yesterday, an MRI of my abdomen. Until scans of last week, nothing was found. In scans last week, radiologist suspected possible bone mets and also saw a "suspicious" ill defined liver lesion of about 2 cm. Bone mets have been eliminated. Liver lesion is still not settled (mets or not), and now, the MRI showed up 5 more sub centimeter lesions. Next week I have a CT guided liver biopsy. No other symptoms, and I'm pretty much gobsmacked because I feel great. Also thought that liver mets were not that usual with ILC. Just looking for the collective wisdom of the group regarding whether this was how your liver mets were found.
Thanks much.
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Mermaid, I disagree that the treatment of liver Mets will not help because you also have bone Mets, but that is pretty much the way a lot of Dr's think. If I understand correctly, it's easier to keep the bone Mets controlled while sometimes liver are more stubborn. I think any chance to get a local treatment is worth a try! How feasible is it to travel to the states if you found someone willing to it? I'm sure there's someone because Grannax had it and I'm pretty sure she's not the only one. On the other hand, maybe whatever your next treatment is will resolve them.
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BevJen- my liver Mets were found by accident. My ZmO was checking something else on US and found them. No symptoms st all.
I might also check you brain depending on biopsy results just in case. You weren’t Her2+ so chances are that it will be clear are very high.
I also know plenty of people who have both liver and bone Mets and are doing well. So it is doable.
Good luck with your biopsy.
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Mermaid,
I haven't had the Y90 procedure, but here is another forum that deals with that, too. It's my understanding from reading about others who've had it, that there is a lot of faulty info out there among oncologists as far as who is eligible. Many say that you can't have any other mets, but some who have had the Y90 DID / DO in fact have mets in other areas that the liver. Your best bet would be going to an Interventional Radiologist with experience in Y90 for some accurate answers. Good luck in your search to find someone who can effectively screen and treat you, in or out of the UK. Best wishes going forward!
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Mermaid, I just had SBRT to the liver and to a few bone mets. Initially my MO was not sure if it would help for me to radiate the liver met, but my Radiation Oncologist who seems to have a more aggressive approach (having more experience with ogliomets) convinced him. I know insurance makes a big deal out of this sometimes. I actually got my radiation treatment in India where it is far more affordable than if I got it in the US where I actually live and have insurance.
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thank you for your reply HLB, I’m collating as much information and opinions as I can to go and argue my case at next appointment.
Take care
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thanks you everyone for your thoughts, I’m taking all of the information on board.
Xx
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The Metastatic Breast Cancer Access to Care Act was recently introduced in both the House (HR2178) and Senate (S. 1374). This legislation will waive the 24-month waiting period for Medicare benefits eligibility and the five-month waiting period for Social Security Disability Insurance (SSDI) benefits for individuals with MBC.
The current system is far too slow- watching and supporting these steps as they move through congress!
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JFL, thinking about you and wondering how are you doing?
Sending many good wishes and a warm embrace.
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Hi Miao! All seems to be going well on my current combo of Navelbine and Tamoxifen. Navelbine gives me a bit of fatigue and bone pain for the first two days after infusion but I don't really have any side effects after that. No hair loss and no skin problems. My liver enzymes and alkaline phosphatase have returned to at or only a few points above normal range. I don't know if they were elevated before from prior medications, recovery from Y90 and/or progression.
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JFL, I'm starting Navelbine with Xeloda in a couple of weeks, as soon as I am recovered from Y90. Kinda following in your footsteps a little. I hope you (and I) get a lot of good time from this.
Sunset
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good to hear the Tx is working for you without major SE...may you and beautiful sunset get a lot of mileage out of it...
I’m waiting to start on the latest Pfizer experiment, and as my mind and body gets stronger, and my aches and pains remain at bay....I’m enjoying the illusion that I’m back to my old self and that I’m not sick anymore.
Dangerous delusion....I know....
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Reposting a story from today's NYT: A remarkable story of how a researcher studied the PTEN tumor suppressor, which is very often mutated or downregulated in MBC, and realized that a common supplement might be able to make it active, and found that it indeed does!!
https://www.nytimes.com/2019/05/17/health/gene-mut...
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I just returned from another acupuncture session with my indomitable Lac Yu Chen. This time we focused on the spleen and the lymphatic system...
She placed regular needles, vibrating needs, and a heat lamp on the front of my body this time. One hour later when the session was over, I found myself walking down fifth ave without the use of my cane., pain free, and at a regular clip. I could keep up with the 20 years old and all the other New Yorkers,
I felt so grateful to benefit from 5 thousand years of Chinese culture and medicine...no SE, no damage to the hearth, liver, kidneys... just sheer knowledge of what a bunch of needles can accomplish when placed in the right spot! FKNG AMAZING!
This is an example of the many undeniable benefits that immigrants bestow on us, US citizen.
Cureios...I've been taking DIM for the last four years...however, I thought its benefits had been largely debunked...I'm surprised to read that NOW it’s useful again??
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Mia, feeling so good that you forget you are sick is not a dangerous delusion. It's GOALS! That's all I want now. Enjoy it.
Sunset
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My doc said I have too much tumor load at this time to do any local trestments. Also found out I now have a mass in my abdomen! Am dealing with some ascites. Hoping and praying xeloda kicks in soon! Am in third week on. Doing 7 on, 7 off.
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Gracie 🤞🏻🙏🏻 for you.
Sunset
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Gracie I’m praying you find great and long relief in madam X...
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Gracie, I'm hoping for some quick relief for you.
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Thank you so much for the prayers Katty, Miao, and abeautifulsunset. I really appreciate them!
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I cross posted in tbe other local liver surgery thread .. my apologies!
so a quick update..
I have been on Lynparza since December after Verzenio failed me. I had Y90 done in September because Verzenio was working at the time at least for bones but as some of you may remember I had a tough recovery from that surgery that messed up with medicine metabolism then Verzenio failed.
Lynparza worked well for bones the first 3 months but not liver .. I had two new spots in liver apparently they were there when I did Y90 but IR said they were too small to detect so they got bigger. My options were move on to Halaven, start a phase 1 trail or do another Y90. Against my vows not to mess up with the liver again, I chose doing another Y90. I did the shunt study, I had a plan and it was time to do my regular PET and MRI after 2 months since the medication I'm on seems to be failing (usually it's 3months between scans). I figured let's schedule surgery right after scans just in case there are other minute tumors, the IR would have the latest image before going in and hopefully can make last minute adjustments. He said don't wait for scans but it only added one week to wait so I waited.
I was scheduled to have the Y90 tomorrow but I got the results yesterday. The 3 mets I had got bigger and I have 5 new ones!!!! All in a span of two months!! They are in different locations. One of them actually is in an ablation zone that I did a year and a half ago.
IR said let's just do the surgery regardless and we can have a plan for the other mets later. But that means I will have to wait at least another 4 weeks to address those, I can't switch treatments and apparently Lynparza is doing nothing for liver. So in 4 weeks I may have an explosion in liver at that rate!
I asked him to consider postponing surgery for a week or so and have a plan to get them all done at once. After consulting with his team he said there's no way he can do it all at once and I may even reach my maximum allowance of radioactive medication and have to resort to ablation for a couple of them. Yet he still thinks doing Y90 is better option. I told him why don't we do chemo again now to shrink them then hopefully deal with less mets if we need to. He responded that recent research suggests that doing Y90 after chemo has a higher risk of liver damage and less success rate.
I'm really overwhelmed, disappointed yet grateful I didn't do the surgery a week ago!
I'm leaning towards Halaven but really not mentally ready to go back to IV chemo with all its drama: neutropenia, hair loss and other side effects.. ugh!
Besides, I feel Halaven is my only real last option.. going there so soon means I'm nearing the end
Any words of wisdom?? How was Halaven for those who tried it? Anyone tried fasting with it? Any supplements that made it work longer?? Did cold capping work??
Please pray for me ..
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Nouzay0, is it possible these liver tumors are now expressing HER+? Was a new bx done to check for mutations and hormonal changes?
You might even be Triple Negative and more doors open for immunotherapy.
This is just crazy. Do you have the energy to seek out a second opinion that might even direct you to clinical trials with expediency? Is Halaven better than Gem/carbo? Anyone on these boards with similar situation, please jump in here. She needs our collective experience.
Seems like your MO is only giving you two options; continuing Y90 or Halaven. Just doesn't make sense. Please seek out a second opinion..can you get to MSK or similar NCI research facilities?
I am so worried for you, but you are not done yet. Okay?
S
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Hello Nouzgay,
I have had a similar situation where I had an explosion of mets over 2 months. Until the end of January I had a single lymph node met and tumor markers int he normal range. Over two months markers went up by about 25 points and I ended up with 5 bone mets and a single liver met. My MO is really surprised at the sudden turn as well. They're testing it again to check if the cancer turned Her2+ (Wouldnt that be nice? It would open up so many options, I'm not getting my hopes up, but worth a try). Have you had foundation one or any other genetic testing done before? Might be a good time to get a sample from the liver mets to see if you have targetable mutations. I see that you may not have tried afinitor yet. I know its generally terrible in terms of side effects for most people, but I was one of the few lucky ones who was able to manage it with a completely normal life for over 3 years. And like you I failed all other medicines within 12-15 months. Maybe you can check with your MO about that?
Good luck to you. I hope you find something that works and works for a prolonged period of time.
Ann
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Nouzay, I am so sorry to hear about your current predicament. Seems odd the IR would push to do the originally planned Y90 and not take a week to reassess the additional lesions found, unless they are in such a different location or a different lobe that he couldn’t truly reach them in one Y90. The chemo thing is a big issue in liver and colon cancer because those patients have few chemo options and one of the only options they do have - irinotecan - causes cumulative liver damage over time. The breast cancer chemos are not like that. However, maybe he is concerned about how the last Y90 went. I think your gut is right to not rush into something that you are uncertain about without more information. If there is any possible way those additional lesions can be “bombed” with Y90 you would want to know that.
As for Halaven, I had a brief stint on it for 7 weeks while waiting for a trial to start and it was very tolerable. Minimal side effects. I did cold caps and had no hair loss at all. I recently started Navelbine and tamoxifen and it seems to be working - Navelbine on liver and tamoxifen or both on bones. Have you had Navelbine yet? I like it. No hair loss. Minimal side effects.
Thinking of you and have been wondering how you were doing for a while now. It does feel scary and sobering to feel like one is close to running out of treatments. I am running out of options too. My MO is now game for anything as there are no more standard treatments available for me. He has testosterone lined up for me next and after that, possibly recycling Xeloda and adding another drug to it. Praying for a miracle for us both in the meantime.Hugs.
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I’m a a NCI cancer center. When my liver mets progressed on Ibrance/Faslodex then Taxol changed to Gem/Carbo. It’s actually very doable.
I did get a second opinion at another very large NCI that suggested Havalen next which is less aggressive but might work.
Y90 has not been offered since the mets are diffuse in the liver.
With IV chemo I was told it hits the blood stream better and hopefully stop the progression. If they can be stable or betterthe next step is to move back to the oral treatments.
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Sandibeach, Ann, JFL and Leee,
Thank you all for your input and support !!
I haven’t thought about doing a biopsy for the new mets, great idea! It’s interesting what we wish for sometimes, if this thing is mutating to have new receptors it will open new doors! I pray and wish for you the best outcome with the upcoming biopsy results.. keep us posted! I’m a bit worried about getting a biopsy from liver though but I’ll definitely consider it!! I did have foundation one done before but nothing of real interest came back from that .. that’s how I ended up with Lynparza (based on a BRCA somatic mutation not genetic mutation). If I get a biopsy and it turns out different I’ll consider sending it again even though my insurance didn’t cover it the first time after they said they would.. 😑
My MO did mention Afinitor a few times but reading about all the horror stories with this drug on these boards is making me very nervous to try it.. I can’t believe you got such a long run on that ... That’s amazing !! How interesting that our bodies work so differently yet we are all offered the same treatment options.
A friend f mine is currently on Gem/carbo for ovarian cancer and she’s having such a rough time with it but it is another option I guess.
JFL, you’ve been on my mind too.. I sent you a pm but I got worried when I didn’t hear back from you.. I totally understand though .. I did also ask my MO about Navelbine but she wasn’t too excited about it but I guess it’s an option as well. JFL why didn’t you go back to Halaven after the clinical study ?? I’m assuming it didn’t fail you, you just switched, right? I'm praying for a miracle for both us and all of us .. we all deserve to get some good news!! .
Thank you all again for your input !!! Please keep them coming
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Nouzgay,
I did have a P13ka mutation from the beginning, which may be a factor in why Afinitor worked for me. Ibrance was approved a month after I started Afinitor. It started out rough for me with respect to side effects, but with a reduction in dose and the right supplements I lived a relatively normal life for 3 and a half years. I have been very lucky especially based on people's experiences here. If you do decide to try it, please PM me and I can send you a list of supplements and other things I did. I posted them on the Afinitor thread also.
Ann
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