How are people with liver mets doing?
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Saulious. Can’t be any better news than NED. Congrats
I haven’t heard about any tumors being too big for y90, either.
My MO decided to wait until May 13 for my next appointment, as scheduled. So, I get two weeks off instead of one. I’m happy about that. My body is recovering and my appetite is, too. I did some yard work yesterday and I’m eating like a horse. Lo
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Grannax, glad you are feeling well, gardening, and eating well!!!! Sometimes a break is good
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Salius!
What amazing news!!!
One more cycle left for me and then a scan 🤞🏻🤞🏻🤞🏻
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Great news, Saulius!
Grannax, I’m glad you’re getting some appetite, (maybe a lot 😊) and some energy back.
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Congrats Saulius! Grannax, good to hear you are recovering and regaining an appetite. It's a vicious circle when you lose your will to eat.
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saulius - that's wonderful news! Congratulations! Wishing Sandra speedy recovery & smooth sailing through rads
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Saulius - Congrats on your wife being NED!!! Very happy for you all!
Grannax - You never cease to amaze me! You inspire me to keep on doing the things I love with the people I love! Enjoy your extra week off.
I also have not heard of a tumor size limit for treating with Y90...
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hopeandgratitude & grannax, yes she saw a radiologist and they did some type of radiation to the liver but it was >9cm and she said it was too big for ablation and y90. super frustrating. it was once ~5-6cm but they didn't do y90 then since there was some lymph node involvement (stable, but made it so the liver spot wasn't the only area of metastasis). dunno what to do, should i keep asking abou y90 or resection?
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Fabulous news Sailius. You seem to have an excellent team standing beside you. So happy for you and Sandra
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macbookair2018 - you need to consult with an interventional radiologist, preferably one who has vast experience with Y90 and in multiple cancer types. I am not the expert but never heard size limit and know it was often used on larger tumors to reduce bulk size
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Dear all, thank you. My sincerest wish is that we all succeed in this journey together - nothing less. Saulius
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Saulius, what beautiful news! I'm so happy for you, Sandra, and your little one!
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Saulius- that’s good news. I hope she heals well and that you can begin BBC and get through radiation soon. I look forward to hearing from you that this intense period of treatment is over.
I an currently in day 5 of 10 for radiation to my chest for a metastatic lymph node that they could not respect. So far the biggest SE is fatigue. I am still working full days and taking care of my 4 kids after the s hol day, so I am hopeful that your wife’s fatigue from radiation is not so bad.
All my best
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LFF - hang in there. When I had SBRT to the lung, the fatigue dissipated pretty quickly. Hope you are the same. You are amazing to “do it all”. But like I tell people- you do what you have to and keep on going. Hugs
Dee
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Thanks, Theresa, Husband 11 and Rosie.
Macbookair, there is something wrong with that picture. Seek out another IR for an opinion.
LFF I hope you whiz through the next 5 rads.
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LFF - I'm so glad that they are treating the unresectable lymph node! I had a number of chest nodes treated with proton radiation therapy 4 years ago and none of them have become active again. I hope that you will be rewarded with a long period of calm after the last crazy couple of months of treatment!! You are truly a superwoman taking care of 4 kids and dealing with cancer treatments! Theresa
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Saulius, that is wonderful news!
Grannax, yay for the increased appetite!
LFF, wishing for smooth sailing through the rest of your radiation treatments.
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uh oh. i'll message her medical onc about potentially referring us to someone who does y90. if that doesn't work should i reach out to someone on my own without him coordinating her care? besides the liver spot she only has two more cancerous lymph nodes (i think those are her only spots of metastasis but the liver is quite large), should we be aiming to have those lymph nodes removed? i'm nervous that i'm young and inexperienced with this and can't get her the best care as she is not really an advocate for herself
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BSandra: Doing the Happy Dance for you and your wife. What good news!! Yay yay yay
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macbookair2018 - if you go into https://www.sirtex.com/us/patients/treatment-center-locator/ you might find something that helps. Otherwise I would look to a large institution near you where they have a number of interventional radiologists. I am not sure where you are located. It might take a little digging but I found an expert 2 hours from me. Local hospital did not impress me with their knowledge or use of Y90 for breast cancer metastases. Your mother’s doctor should give you a referral. No reason he should not. Very important consult.
regarding lymph nodes - where are they located? I have not had to have any lymph node treatments yet but folks on here have and I hope they answer. Sometimes the lymph nodes can be removed and followed with radiation or whatever is appropriate, sometimes chemo. Please see recent conversations from BSandra/Saulius0 -
Update :
Saw my MO today and asked about why we aren't staying on chemo until progression. She said she usually does 6 cycles and then a break because of toxicity and wanting to give the body a break. Because she knows that currently, my body responds well to chemo, and because to her, I got a long time off endocrine therapy ( I guess everyone's definition of long is subjective. I was on tamoxifen for 5 months before having an oopherectomy and switching to letrozole where I feel I got a year or maybe a little more out of it), that it would be okay to just do tamoxifen, give my body a break from toxicity , and go from there. The risk we run into is becoming resistant, progressing, and going to an even more toxic therapy without giving my system a chance to rebound. She told me it is up to me and there is no rigth or wrong answer in our case. There're reasons to continue and reasons to take a break. Unless i've already stopped responding to treatment, there's a good chance my tumours will be gone by the end of six. fingers crossed
She did mention that where we live, treatments like ibrance are given on a compassionate basis and in windows, so we have to consider that as well . She does not want to use those drugs until we have to but it might have to end up being earlier than we want so I can access it period. It is so frustrating my province hasn't adopted it yet.
I know this is a liver mets threat but I also wanted to ask anyone who's gotten the covid vaccine.. how long did it take for SE's to appear and disappear? I booked my shot for day 3 of my cycle, and i get tx on day 1,8, and 15. I don't want the SE's to be so bad I miss chemo.
Thanks!!
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Hi everyone
Not sure if anyone remembers me, its been hard for me to follow this site due to some computer problems and neuropathy which makes typing messages irritatingly long. I am following all of you and am so grateful for your news. BevJen, you are particularly in my thoughts and I haven't forgotten your warmth and courage in your posts.
My latest scan showed a small regression in my liver mets (now about 4.5 cm) and some evidence of bone healing(hooray!), but my CA 15-3 is spiking again, so preparing myself for the idea that I might truly be out of options. Also the olaparib (Lynparza) is hard on the kidneys and I need blood transfusions every couple of months. But otherwise I am so grateful for this extra year (covid notwithstanding!). I guess my next steps will be trying to reconnect with the interventional radiologist I found a year ago--she didn't want to operate while I was on any chemo/targeted therapy -why,l don't know since it doesn't seem to be the case for many of you who have had a good experience with Y90. But she may be more open to it when I show progression again.
B-A-P, I got the Pfizer vaccine 4 days ago and the only SE is a sore arm just like a flu shot.
Hugs to all/Amy
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BAP - we got the Pfizer vaccine and although I had no real SEs other than a sore arm, my wife had a fever of about 101 starting five days after the second shot. She took Tylenol which arrested the fever and it was totally gone after another 24 hours. None of us including her MO don't know what else could have caused it other than the vax. Good luck.
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Dear BAP, when Sandra got her Pfizer vaccine, with both doses she did not feel anything - just the sore arm for 1-2 days but knowing what you all go through in treatments, I would not consider it as anything serious. We checked her IgG yesterday and it was 31 Units/ml, so not fantastic but it means she's got immunity and that the vaccine is wonderful (again, thank you USA).
Today we went to the NCI's radiology department for consultation, and after reading the whole medical-history RO decided that radiation is will not be done, as it was performed 1.5 years ago, and with this "minimal progression" and surgical removal, RT could "do more harm than bring benefits". We asked our MO after this, if multidisciplinary team's decision to maybe try RT, has influenced the chemotherapy-consillium decision not to give chemotherapy, and she said "no, decision not to prescribe additional chemotherapy was made taking into account whole situation". So, Sandra stays on trastuzumab+pertuzumab. This actually was our initial wish: radical removal of these malignant lymph nodes, and staying on trastuzumab+pertuzumab, but now, as we prepared for chemotherapy or RT and, suddenly, non of them will be given, we feel strange - we joke with Sandra that a human can never be happy, can he?:) Or are we just those strange people who ask for more treatment? Ehm... so let's hope our team made the best decision (we'll meet the surgeon on Saturday, so we might ask once again why he thought chemo could be given)... maybe in the beginning they just did not want to exclude the "harshest" scenario and were preparing us for it?
Hugs to everyone,
Saulius
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Salius,
Sometimes the hardest thing to believe is the best case scenario you know? Like what? We are getting what we actually wanted this time? I think after so long in this world, we are just used to hearing we need harsh treatment and that it's the only way. I think your appointment will go well this weekend. Keep the faith. this blip in the road has been going in a positive trajectory and I think it'll keep up. FIngers crossed!
And thanks for the replies re the vaccine. I'm still at a crossroads . My naturopathic oncologist said it was his opinion that I try to do it as far from chemo as possible and since i'm at the end essentially, I could wait another 4-5 weeks. I'm still going to think on it another day or so. The schedule isn't open for June yet and thats when everyone can book.. so I worry if I cancel now, that i'm setting myself up for waiting even longer than I prefer. No decision is easy for me , clearly lol
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BAP - I had the moderns vaccination. 1st one, no issues at all, just a slightly sort arm. I feared the second one, but got it 1.5 weeks post Y90 and while still on verzenio. I developed a blistering headache late day 1, but ice packs and meds and hydration helped reduce that. A little tired and minor headache 24 h later but 48 h later back to normal. My husband however got hit pretty hard for first 72 hours and then slowly back to normal few days later.
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BAP, I am on Xeloda for liver mets and had the JJ vaccine. I had a mild headache for a day, but no further problems.
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BAP, yes, we are so used to harsh treatments that it is so hard to believe doctors chose "easier but better treatment". Crazy... I also think, if you are on chemotherapy, you risk not to develop COVID-19 immunity, so it is best to be vaccinated after chemotherapy, if you do not have big risk factors. So, I think, it is more about getting the best out of vaccine but not about SE that you could face while on chemotherapy. In LT all cancer patients were vaccinated in February.
Arolsson, are you joking? Of course we remember you, and I am so happy you got these tumors reduced. Again, I am a very big proponent of ultrasound. Could you get one just to be sure CA15.3 is behaving badly for other reasons than progression?
Saulius
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macbookair, Yes, I think getting a consultation with an IR is very important. I hope the MO will give you a referral but if not, pursue it on your own. Also, with only one large tumor, re section could be a good option depending on where the tumor is located. Being an advocate is absolutely necessary.
I had the Moderna vaccine. The first one was slight soreness in my arm. The second one I had the textbook reaction 24 hours after the shot. Flu like symptoms with 101 fever, muscle and joint aches, etc. it went away in 24 hours.
Aroison of course I remember you. Glad you are doing okay, stable at least.
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Hi Amy,
So good to see you and I'm happy you've been stable since last summer.
As far as the rise in your CA 15, my oncologist always says he doesn't treat numbers, it's just one indicator that he keeps an eye on. I'm keeping my fingers crossed that it's just inflammation or simply "one of those things" it turns out to be a false alarm.
Keep us posted and again it's so good to hear from you!
Katty
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