How are people with liver mets doing?
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Thank you for the words of encouragement, Grannax2 and Frisky. To answer your question, candy, I got obstructive jaundice, and it appears that some kind of cancer caused a partial blockage in the bile duct. I got drainage and a stent, but we still need to figure out what kind of cancer is involved in order to plan treatment. I am frightened to be off any treatment for several weeks but they don't want me to have any increased infection risk after the “procedures” which they will do to obtain a core biopsy. I feel scattered and stressed. Trying to help my kid through some stuff too.
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Prayers for you Shetland. So sorry you are going thru all this. Life is sure tough. Hugs from here.
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Shetland you’re half way there...one day at the time....it’s important for you to not get unduly stressed out while you wait. Give your body a chance to heal and adapt to the stent and for the drainage to resume naturally. Stress causes inflammation. Praying for a quick and easy resolution to the second question
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Shetlandpony- thinking of you and hoping that they get some good material with the next biopsy- also that you are feeling better. Feels so bad when things go awry! the kid stuff is the hardest!
hugs
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Grannax,I just caught with the messages. Sorry to know X didn't work for you. I was prescribed Xeloda but within a month developed really bad hand and foot syndrome, mouth sores that didn't heal, all my MO at MSK quicly stopped it. MRI showed my liver mets had progressed from 2 tiny spots to about four 2 cm lesions within 2 months.
MO immediately started me on Taxol. After 3 months on Taxol, I had PET scan two weeks ago, and all my liver mets are 50% of their original size, my tumor marker (15.9) has dropped by 67%. But I don't know if Taxol works on my bone mets . Will have to wait and see. My experience with Taxol so far: The side effects are definitely manageable, since I am on low dose Taxol.
As others have mentioned above, there are a lot of options available and Taxol is only one of them. I had dose dense Adriamycin, Cytoxin and Taxol in 2008. This was a very aggressive regimen and very hard for me. But after certain number of years, I guess we can get the same chemo if necessary. I am sure your MO will come up with suggestions. I asked a lot of questions about historical data, side effects, if I will be able to continue working, etc. I generally make a list of questions to ask prior to meeting with the MO.
Hope you can get the details of your next treatment soon. Please keep us posted.
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S3K5. I'm glad you're doing well on Taxol. I had Taxotere in 2001. It was pretty hard on me. What did they do to it to make it less toxic? How often do you get it? You lost your hair, right? And, I assume the pre treated with steroids. I'm allergic to high dose steroids.
I guess she's taking so long because she's checking back on all of my different, extensive treatment. Maybe, some of my info was not in my chart and she's having to request it. I'm trying to be patient but I'm ready to do this. I want to move forward, I've been stagnant for too long.
It's frustrating for me to look back at the last nine months. All that time I thought I was fighting while on three different TX, I was really going backwards. Nothing has been effective since last October. I'm ready to go forward.💞
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Grannax, I have read that Taxotere is harder on patients than Taxol. Taxol can be given at a lower dose with different schedules - weekly, one week on -one week off, 2 weeks on- one week off, etc. On the "Taxol for Stage IV" forum you can read up on different experiences, with ladies on different schedules. I am on '2 weeks on/1 week off ' schedule and seems definitely manageable.
My pre-treatment meds include Prevacaid (I have history of stomach ulcer), Aloxi for nausea, steroid (low dose) and Benedryl. They give benedryl in case I was allergic to either steroid or Taxol itself. Yes, it makes me sleepy so I always need someone to drive me!
At MSK they provided me with an option of Paxman scalp cooling along with hands and feet cooling during Taxol infusion and 1 hr before and after infusions. This is through another company. So I had to pay upfront and then claim for reimbursement from my insurance. I am still waiting for the insurance to respond to my claim. For me it is worth it since I am able to retain more than 50% of my hair so far (10 sessions completed), and no neuropathy.
In 2008, when I got dose dense Taxol (weekly), I had lost all my hair within 4 weeks of starting. Plus I had neuropathy/nail issues too. This time, I don't have any of these (so far). For stage IV, they give us palliative treatment and the dosing is definitely less since we are talking long term.
I went through similar roller coaster last year at a different cancer center - tried Gemzar for 6 months and prior to that I was on Ibrance, Verzenio with faslodex. But every scan showed progression in bone mets and then in Dec2018, when a scan mentioned liver mets, I freaked out. That was when I consulted with a MSK oncologist. She started aggressive treatments right away in Jan2019. I feel the same way as you do - I wasted about 10 months in 2018 going with less than optimum treatments for me.
I am gald your MO is being thorough and I am sure she is looking out for the best option for you. I am sure one of the IV chemo will definitely work for you. Good luck with your next treatment.
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Grannax2 (and maybe Gumdoctor), perhaps your MO's could look at the elacestrant clinical trial https://clinicaltrials.gov/ct2/show/study/NCT03778931?term=RAD1901&rank=5&show_locs=Y#locn
It's enrolling at many locations.
Elacestrant is a SERD with a partial agonist activity, so almost like a hybrid between tamoxifen and fulvestrant, and it's a pill instead of an injection. In mouse models it was effective against cancers with ESR1 mutations, even in cases where fulvestrant/Faslodex was not. It accepts people that have had 1/2 lines of hormonal therapy, and specifically people that have tried a CDK4/6 inhibitor.
The downside is that it's a Phase III, randomized study, so there's a significant chance of getting the standard of care (physician's choice of hormonal therapy).
For grannax2, that wouldn't be too bad since you've not had fulvestrant.
For gumdoctor I'm not sure...
Your MO's might want to bring out the "big guns" of chemo for now, but maybe this is a trial to keep in mind once you stabilize.
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Thanks for the info, I'm a sponge right now while I wait.💞
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I am really hoping these new generation SERDs bring us some new options. I have been on chemo for years after passing through AIs and Faslodex. However, I am now on chemo (Navelbine) and tamoxifen. Recycling.
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Won't we all be so happy when oral SERDs are readily available and nobody has to put up with Faslodex shots?!
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I thought the shots were not so bad, except now I am so happy not to do them and really wouldn't want to resume them- to go into the hospital every month, feel anxious about which nurse it was going to be, eat ginger all day due to nausea. I also read that about 40% of the time the shots were not getting into the muscle. so I am really excited about the oral serds, not to mention that they will probably be more potent! sounds like we will have several different ones from all the people on various trials.
How are you shetland?
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I'm supposed to go on the oral faslodex trial when it opens in Vancouver, probably October or November. Honestly I was disappointed when faslo failed me. I liked having the shots once per month, not worrying about taking meds every day. But it was an easy treatment for me & I am very sensitive to new meds. I'm having SE's on a very low dose of Xeloda, so it's always a crap shoot for me.
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Nkb, I am on hold. My onc seems to think the obstruction that caused my jaundice (got a stent) is likely to be ILC going to weird places. That concerns me a lot, because when ILC starts doing that stuff, I no longer feel so hopeful about getting another five years, and maintaining good QOL. But next steps are more blood tests and then a biopsy, next week. I’m a bit scattered and unproductive right now.
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Shetland I'm feeling the same way. My doc still did not call. 💞
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And now its the weekend. Sorry you have to wait so long, Grannax2! Once you do get to talk to her, you can be clear about how unacceptable this waiting is and make a better plan for communicating.
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Shetland I did remember one thing. I have to do a wash out from X. I think that it's for two weeks. I still wish she would have written back on my portal. B
At least I have fun plans with my grandchildren this weekend. That will pass the time.
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What is SERD's???
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Selective Estrogen Receptor Degrader -- Faslodex is a SERD. I think some others are in trials
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Thanks Nbnotes
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Hi!
I'd love some insight into CA markers 15 & 27!
Mine were normal (15 ish) until liver progression the CA27 jumped to the 40's and fluctuates slightly. I get so elated when it's normal but so discouraging when it's marked at high.
I just finished the last GEM/CARBO and waiting for scans in a couple weeks so this always sends me into an emotional tailspin of what if this more aggressive tx doesn't work on the liver either.
They scheduled the scans a week before MO appt and so I'll have the results but will have a week to wait for MO since she's never calls. I've tried since day one to make them closer together.
I'm trying to look at that differently (for my peace of mind) and that this will give her time to consult with colleagues and prepare for an informative appt.
Maybe it's scanxiety... but I have a let down (?) after that last chemo and awaiting scans. If it's good, better or neutral news the wait won't be bad but if it's not then maybe that's what I'm anticipating. It's almost like going through a diagnosis all over again and so hard.
Any thoughts, experience or support is much appreciated ❤️
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Leee- I too am confused about CA markers. So I can't really help you as I don't understand them myself. The last 2 months my markers have been more elevated. Usually they fluctuate and are never "normal" but the last 2 have been higher than ever before. But my scan last week showed "stable". So are the markers unreliable or , my fear, are they showing activity but either not where scan picks up or not large enough for scan to pick up yet. I am going to ask my MO her opinion at my appt this upcoming week.
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Hello All,
I have been skimming your posts...but mostly resting and waiting...for MRI Monday morning and then ONC appt on Monday afternoon. No tx of any kind right now. Scared. Heartbroken. Waiting...
My pool was closed for 2 years...so it took over 4 weeks for the pool crew to get it completely ready for use.
I am spending as much time enjoying this as I can stand...
Sharing it with all of you...in case it can help you...
Gumdoctor
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Hope you enjoy that beautiful pool
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Awesome blue.💞
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A bit behind on my reading but wanted to answer Grannax's post from a bit ago. Good memory, Grannax, yes, I have a paralyzed vocal cord and sound like a squeak toy when I talk. The working theory is that a lymph node tumor wrapped itself around my right vocal cord and when it resolved, it tangled the cord so it's not functional. Too risky to try to fix surgically, so I'm stuck with the high voice.
Adding to the cardiotoxic topic. I was reviewing future options with MO and she mentioned Doxil, but said I'm only eligible for a few rounds b/c of my previous 4 rounds of A/C back in 2006. Hugs to all, JL
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Good to hear from you Jaylea. How are you doing? Back to eating solid foods? How is your treatment going? Think of you often.
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Candy, hey! I'm doing good on Halaven. My esophageal met resolved to the point where I can eat, but I still have and use the feeding tube for the few days in the cycle when I just can't eat anything. I haven't scanned yet so don't know if it's working. Heading into 3rd cycle so scans will come along soon enough. We celebrated our 33rd wedding anniversary last night with pasta and tiramisu - yum. Hope you're doing well also.
Shetland, you're in my thoughts, girl.
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Jaylea-- Good to hear you are doing well. I pray for you daily. Keep me informed of your scans when you have them. I see your posts here and there- just hard to keep up with everyone. Happy Anniversary !!! And the food sounds great !!!! I just had my 3 month CT- all stable so far. TM's up a little so kind of concerning. Hope just a fluctuation and not something lurking.
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jaylea Mine is in my mediastinal met. On this scan its getting worse. Jnh said hers pressed on a nerve going to her vocal chord. Paralysed one. She could only talk like you. But she had it radiated and went to speech pathologist. Now she can talk and eat. Maybe, yours and hers and mine are in different places. Mine is near my esophagus. What were your first symptoms. I've been having hiccups and gravelly voice. Jnh says she still has hiccups a lot. I'm going to talk to my MO about radiation. How big did yours get?
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