How are people with liver mets doing?
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Dear Gumdoctor, could that maybe be a pseudo-progression that is sometimes seen with immuno-therepies? When there is inflammation (immune cells attack malignancy), these places are well known to "light up" a lot... It is a known thing, so was this possibility completely excluded? Sorry to stir-up the water. Saulius
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Alabama Dee. You found an ERS1 mutation clinical trial in Nashville? What is it called? Do you know anything about what the drug is? Also, where else are they doing the study? I'm at ITS A in Dallas.I have ESR1 too .Gumdoctor What an amazing turn of events. Soak in all the glory from your award. You earned it and really deserve it.💞
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Saulius -
Anything is possible. I did not have a pet scan though for something to light up. I had 2 CTs and a liver MRI. Waiting on fully body bone scan report still.
The size increase of existing liver mets is the thing noted with new lesions developing on both the CTs and MRI.
I don't know enough about this new drug to really understand the mechanisms or what to expect. It is created by conjugating chemotherapy to antibodies which go directly to the cancer cells.
We are all learning.
Gumdoctor
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Grannax,
Thank you. MO and I talked about Y90 and localized tx...as I suspected, she said the blood clots pose a much greater risk for me with any of the potential localized therapies. She wants me to stay with the study drug for now and see where we are with this new progression and ascites in a month with more scans.
Gumdoctor
PS - The award is very nice...it was much more important to me to obtain it before cancer showed up in 2014. Now there are so many more important things to deal with...still very appreciative...I suppose it will look nice on me with my uniform in my casket...
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esr1 mutation trial looks promising. Hope I get in.
https://clinicaltrials.gov/ct2/show/NCT03781063
I also have PTEN so researching on my own to find trials MO said she did not find anything for me at MDA. Most phase1 trials say you have to exhaust all other therapies but need to be healthy enough to go on it 🥴Neuroendocrine is also a route I plan to research again.
Gumdoctor I’m sorry for your report hoping you find the right therapy that works.
Blondie1 I feel your fear. researching options helps to distract me. I try to live by the following phrases
“Making the most of each day for the gift it is”
Choosing to be thankful for the good things in my life and not dwell on the future what if’s.
Blessings to all.
Dee
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Gumdoctor, congrats on your very impressive, well-earned medal. You are amazing! Your wig does look very real and is gorgeous. It is definitely a double edged sword to look “good” - it is nice to blend in sometimes but is also frustrating that people think we are fine if we look “normal”. I would be interested in where you found that wig. Sometimes drugs take a bit of time to start working. I hope that is what is going on with your seeming progression on the trial drug. It can be so sobering to feel as if the walls are closing in on all sides. It is not fair.
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Dear Gumdoctor, mmm, MRI/CT with contrast also show activity and "light-up". Don't want to imply anything, just pray for pseudo-progression, that can quite often happen when immuno-therapy starts. Best of luck, Saulius
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Hi liver mets sisters
Scan results yesterday. My two large liver mets have both increased in size, one from 11 to 33 mm but with a note that the first reading was difficult, ie it could have been larger even in september. But skeleton unchanged and no new mets.
Have progressed pretty much immediately on Taxol, nab-pax, xeloda (worked but was an absolute nightmare) , navelbine, and a few others I can't even remember. waiting for that all-powerful multidisciplinary committee to decide next steps and in the meantime continuing with Halaven which I tolerate fairly well.
next may be Tecentriq or Keytruda since I have the PD-L1 mutation. Have also decided to shell out for the Foundation One test (not covered here). Its expensive, especially now that I am barely working but I am hoping it will make me a better candidate ready to hop onto new trials.
Nightmares all night about running away from a murderer. Not so hard to interpret that one!
best to all/AMY
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Arolsson, so sorry to hear about the progression. I hope your next step is more successful. Have a better night's sleep tonight...I'm sending our best detectives to capture your nightmare murderer!
Love from Texas,
Katty
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Aroisson,
I can't remember where you said you were located, but have you discussed local liver treatment with your doctors? Is it something that is done where you are? By local liver treatment, I mean microwave ablation or cryoablation, trans arterial chemoembolization (TACE), Y90, or whatever else is out there? Here, these procedures are done by interventional radiologists. If it's possible to get at these liver mets, perhaps one of those procedures could wipe out your liver mets for now. It sounds like they are "difficult," meaning that treatments are not touching them.
Re Foundation One, I would send them an email and explain your situation. It is possible that they might give you a discount on their testing? It's worth a try.
Good luck.
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Dear Arolsson, I agree with BevJen - if you have only two liver mets, you should go for local treatment. Ask about ablation (SBRT, cryo, electric), as their size is very right for these procedures. PD-L1 also gives treatment possibilities, as you mentioned. Hugs to you and remember that nothing is lost yet, Saulius
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Amy. Yep, I also understand that nightmare. I love watching and reading murder mysteries but not the one we are living through.
Sounds like you are on top of things, doing all you can to be ready for a trial that matches your mutation. I found out about one that is for ESR1 but none are in Texas. I don't have the funds to travel.
Let us know what your team of experts has to say, I'm very interested.💞
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Arolsson- I head great things about keytruda. I’ve never been eligible for tgrr ER it studies but hope that you are. They are on the fast track for approval so hopefully it will be available to sll later this year.
Thinking of you.
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Thanks to all!
really really, it means so much.
A reflection is that we metsters grapple with the glass half full/half empty all the time. Your liver mets are 3,3 cm- great! Your liver metsm are as big a 3 cm--uh oh....thats huge..
Here is the answer I get--for better or worse- my onc feels that battling individual mets is like whack-a-mole--it is not going to do anything to resolve the underlying problem which is that my body is not recognizing the cancer as something to fight. A comparison could be made-in my case- to a hornets nest--they will recognize the attack and just relocate. That is an answer I can appreciate for my own situation, especially since my liver function is normal. Those of you successful with ablation or Y-90, I am excited and hopeful for your outcomes. Just repeating what was said to me with respect to my unique situation.
This week two male friends have shared their news that they are stage IV--one with intestinal cancer and one prostate. The usual questions about an alkaline diet, turmeric, CBD and Olivia Newton John. Oh yes and by the way celebrities with self-generating breast tissue..... Answering as compassionately as I can. Shedding a tear in the meantime and making dinner. At the end of the day we do what needs to be done.
Meanwhile my blood tests will let me do halaven tomorrow but hemoglobin is well below normal. Longing for simpler times.
xo to all/AMY
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Amy
My heart goes out to you. I am fighting fear more now than before. After 3 line failures in 9 months, I too am worried if the next line will be any good.
Thankfully my MO referred me to IR for local treatment to reduce tumor burden in the liver. I guess I think of it like punching back the big ones while we figure out what works on the diffuse little bugers.
Looking hard for a clinical trial. NIH said my Neuroendocrine features disqualified me from their immunotherapy clinical trials. Still waiting for esr1 trial to call me.
Blessings,Dee
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I often use the wack a mole analogy for my Mets. I play it with respect to both my liver and brain. Currently, I’m playing with my brain and my liver is behaving.
Having faught metastatic cancer for 7 years and cancer for 9 years, I am ok with the wack it down for now and see what comes back method. I know I won’t be cured but in my time of fighting 3 new therapies have become available.
i might be a bit biased as I did convince my team to take care of one pesky liver met in 2015 with a resection and that bought me 2 years.
I hope that you find some plan/treatment that works for you.
Thinking of you
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Gumdoctor, if they are keeping you on the trial, they believe it may yet work! Thinking of you often.
Aarolson, I like the idea of immunotherapy for you. It is something different, and you have that mutation. Agree F1 is a good idea. That dream. When I was first diagnosed, my DH dreamed I had been unjustly put in jail, and he was formulating a plan to tunnel under the jail and rescue me.
JFL, I found a great wig by Ellen Wille. Hers are known for not having “too much" hair. Mine fools most people.
LFF, thank you, your post encourages me. Let's keep whacking those moles.
Dee, how are you conducting your search for a trial?
I am scared right now. I can feel that the liver tumors have grown. Waiting for scan results. I had many treatment breaks during my six months of in-and-out of the hospital for stupid things. And then short courses of Halaven then Doxil, neither of which worked. And now I have been off any treatment for two months! I was going to do Y90 but didn't. (Details on that thread.) But if my next treatment does not work, I will revisit that and ask to do it. I'm kind of mad that my onc let this much time go by. I had a stent exchange, and plans for Y90, but that should not have taken up so many weeks. Next time I will not go off treatment until my next one is in hand. Anyway, next week I am supposed to start a trial of neratinib, herceptin, and faslodex. This is to address the ERBB2 mutation. We think it may be the driver.
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Shetland. It's hard to understand why the "conversation" about the y90 couldn't have happened sooner. Grrrr. Since my y90, I've had a few days of pain in the liver area. Immediately my brain jumps to what if the tumors were too aggressive and the y90 is not working as well as it did last time? It's the unknowns that we face, and see others face, that get us scared. And the waiting to know what's really going on, scan results. I have about six weeks to wait. UGH.
Here's to whack a mole. It's given me more time. I've enjoyed that time and hope for more time with this round of y90's. Each of us are directed in different ways as to our TX.. Doing what seems best, with the knowledge we have at the time, is all we can do.
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Amy, my Halaven friend, sending up positive thoughts that the Foundation One testing offers new clarity. Good that you're staying on treatment while you and your team develop a new plan.
Shetland, hoping that the neratinib cocktail is exactly the right key at the right time. (Key is baked into the cake slipped into your cell.)
Grannax, couldn't agree more that doing what seems best with the information at hand is all we can do. Here's to all of us doing our best every dang day.
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Shetland pony, scanxiety is the WORST. hoping you get results soon, and can quickly develop a plan for next steps. Im still on Halaven which we think may have been at least somewhat effective in keeping the cancer from spreading even more. Iam reading up on the autoimmune risks from Tecentriq and Keytruda and want to do anything I can to avoid those.
Grannax, you've given me th courage to keep pushing for the Y90. I know we use it here but mostly for liver cancer.
good night all xo
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JFL - Thank you for your kind words. I get my wigs from VogueWigs.com. The best looking ones are expensive ($250 and up) but sometimes the site has sales.
This particular one is synthetic, Raquel Welch brand, called "Longing for Long." The site has a search feature to cut down on scrolling time.
I finally figured out that monofilament wigs look very natural and are my personal favorite. They apply individual strands to the cap so it really does look real. When I have it on, you can see my scalp through the cap so the part looks like it is really my hair. I like this wig and this look way more than my own hair I shaved off in the live Facebook video last July.
Gumdoctor
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Thank you everyone for your sincere concern over my recent liver progression and ascites news.
This, combined with the Army getting ready to discharge me, actually has overwhelmed my capacity to cope. I am not losing it but I am not able to attend to everything when other people want me or expect me to. It is all too much right now.
And to top it all off, I had tx last Monday (IMMU-132), infusion #5. Except for nurses having alot of questions for the Research Coordinator while they administered my tx, things seemed pretty typical. They were also working at a snail's pace, but I know they get overwhelmed too...
On Tuesday, I received a call from one of the Research Coordinators (not the one the nurses consulted on Monday). She said she had to inform me of an irregularity in Monday's tx. The infusion is supposed to be titrated so they start with a low dose, then increase the dose if I am not having a reaction. They keep doing this every 15-20 minutes until infusion is done. Apparently the Monday nurses administered treatment drug too fast and they were now concerned about my having an adverse reaction. She indicated she would call me every day this week and I might need to come in and see my MO for evaluation.
The next day I woke up with a bright red and swollen face/eyes. I had to drive 3 hrs in snow and ice to get to our other house. Research Coordinator called while I was driving 40 miles an hour in the ice and snow. They wanted me to come into the clinic. I said no. I was already 2 hrs away from the clinic and had a stressful drive and was not going to do it again unless there was an emergency. She did not like my answer but took my no as a no.
Redness and swelling now gone. No emergency. Hopefully they can get it right next Monday...
If I weren't so uptight about everything, I would probably laugh it off...but I am not there yet. Will probably never get there either...
Gumdoctor
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sorry gumdoctor.
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Gumdoctor- Good grief you cannot catch a break. My prayers to you. I am thinking of the poster with the cat hanging onto the rope, Wish I could be there for you--a hug, a shoulder for you. If you need to vent, just PM me.
Your virtual friend.
Edited to say- I think the poster is a cat clinging to a branch. You know what I mean---"just hanging on". Hugs.
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Gumdoctor. I bet the nurse was embarrassed making that phone call to you. If not, she should have been. Human error. More unnecessary stress to our already super stressed life. Grrrrr I'm glad you went home and not to the hospital.
I had my face turn red and swell up. It was back when I was on Ibrance. First we thought it was poison ivy, then cellulitis. I was admitted for a couple of days on IV antibiotics. Looking back, I don't think it was either one. Who knows?
I feel like I'm on a break from TX because I'm only on Faslodex. I have no SE from it. On the flipside, I worry it's not enough. What will my PET say on March 20? By then I will have been on Faslodex only for six months. Of course I had my y90s in November and December, so there's that.💞
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Gumdoctor, my face turned bright red from prednisone pre-meds. Maybe that's a possibility? I wish we could all physically be there to help you.
Katty
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ya- prednisone makes me really pink in the face.
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Kattysmith -
My face gets red 2 days after each infusion and clears by day 3. This time it was twice as red and swollen. My eyes were about 1/2 swollen shut.
I am not worried about it, whatever the cause. It went away.
I was exasperated by the experience because things have already exceeded my ability to cope. More things, on top of the "new normal," push me to feel like I am completely out of control.
I expect this kind of lapse of competence from the Army. I do not expect it from Washington University in St Louis.
Gumdoctor
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gym doctor- I have found that being a patient in a clinical trial is very stressful- no control, lots of time waiting,. Very different than my experience at the community hospital. the detaikk l s are hard to keep track of like what is paid for vs not paid for. It’s nice to have access to the drugs but navigating the whole thing is beyond stressful.
I’m so sorry you have to deal with all of it on top of figuring out how best to proceed with your treatment.
Hig
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Update -
MO went to liver tumor board again last week. They recommend I be removed from the study. Next option is Halaven OR get worked up for possible Y90 (Grannax!!!). The liver tumor board think the blood clots are stable and are not an issue for Y90.
There are abnormalities in left liver, not consistent with mets. So next step needs to be biopsy of left liver to see what is going on there.
May or may not be getting tx (Halaven) today...
Never a dull moment...
Gumdoctor
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