How are people with liver mets doing?
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Oh Nicole, so relieved for you!!!
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Nicole - WHEW!!! Awesome news
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Nicole- Whoopie!!!! So liver good then. How is bones? I forget. And what are you on treatment wise?
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Thanks Ladies!!! Candy...my spine is hurting...especially the C7....my MO did talk to the RO (I do want to consult with 1 more who is where my IR is at Medstar George Washington) but anyway the RO from my cancer center said he will have to see an MRI he wont go off the PET that MRI of T & C spine is scheduled with sedation June 16th...that will give us time to see if once we up the Afinitor and add Faslodex (this thursday) if maybe it is working. Right now I am only on 2.5 mg which is like nothing and its not working been on it for 13 or 14 days now.
I AM GOING TO CROSS POST THIS:
Ref Y90... Grannax I know you mentioned that your IR said Y90 can only be done 3 times in Liver...did he mean for you? I asked my IR about that and she said she can do it as many times as the liver can tolerate it...and it show to be having good re-growth of liver and liver numbers are healthy and good. Obviously if a persons liver is in bad shape then no they cannot keep doing it. Just thought you all might want to know that... btw I was paraphrasing a bit from her exact words..lol
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OhioNana: I am sorry that you have joined our club but welcome to open hearts and arms. We are all here for each other.
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Nicole. Congrats on dead liver mets.
My I R said I had my lifetime maximum of yittrium after two y90s. I think it totally depends on how much yttrium is used each time. Yes, I had lots of mets each time, too many to count.
He said I was not eligible for a third y90. Of course, I don’t know the numbers on how much yittrium is too much for a liver to tolerate. He didn’t quote how he calculated that figure. That would have been way over my head anyway. Lol
By the time I asked about the third y90 I had diffuse mets, hundreds he said. So, putting that all together, I understood him to say I would go into liver failure if he did a third y90. That’s why he did the microwave ablations instead.
Sorry for any misunderstandings about how many y90s can be done in general. I think it must be very personal to each patient. Your IR knows exactly how much yittrium was used on your y90. Only she would know that. Your second, third, etc would depend how much would be needed to treat your lesions if/when you need another one.
Best case scenario, AA will keep you from ever needing another one. Wouldn’t that be awesome?
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Has anyone heard from Bev? Just wondering how her hip replacement went yesterday.
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Grannax I have not heard from Bev..I am assuming she is out of it with pain meds.
Thanks for explaining that better I must have misunderstood you the first time
. Yes I am happy that "for now" they are dead... I am switching Thrusday from Afinitor / Exe...to Afinitor/ Faslodex. hoping it starts working but not too hopeful...we all know I have not had much luck with treatments working...but thank you for your well wishes0 -
Dear Dee, thank you so much for your comforting words. You are right, it is about long term. I am so sorry for my family, as summer is short here in Lithuania (still no grass, no leaves now), we always wait for it so much... and chemotherapy would start exactly in the beginning summer... ah...
Nicole, I am so excited for you, for this painful but amazing response in your liver. You are tough, that's the way to go!
Saulius
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Nicole, that's GREAT!!!
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Thanks Katty and Saulius....I'll admit...I was getting worried...mainly bc of the email my MO sent mentioning that if it was as it looked on the MRI report we would have to go to "AGGRESSIVE" treatment... my husband...God Blessed me with him...he was calm...he said from the beginning "these radiologists reading this are wrong...they are the same tumors that were just dead in Feb on the CT there is no way they could all have grown that fast and nothing else new....lets just stay calm and wait for IR to view the disc"... He was right
. When she called us she goes "HI NICOLE>>>>>> how are you feeling>>>" I could hear a smile in her voice.... I said well....a bit panicked.... lol she said "don't be you have no active disease in your liver right now"......then I told her what the PET said about a rim lighting up she said I will have a look at that and let you know...but all looks good just the way it should. She also said my ALK Phos could be elevated from the slight dialation of the bilary duct.Now I just need this Afinitor to work on these spine mets..they are starting to become a nuisance (to put it mildly) lol
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Nicole, glad to know that your liver has no active disease. Hopefully, Afinitor will take care of the bone mets and stop the progression. Were you able to get Dexilant for your stomach issues? My ALK shot up soon after the microwave ablation and then started coming down to pre-ablatin numbers.
Grannax, you are right about Y-90. This is not based on the number of times but on the number of liver lesions that needs to be treated. My IR said the same thing - since I have diffuse liver mets, Y-90 would cause liver failure and in her words "You will pass on with liver failure very quickly". Oh, Okay! So I have to wait and hope some treatment would work to shrink these liver mets.
By the way, my previous PET scan and liver MRI reports never mentioned anything about 'diffuse liver mets' since they compare the images to the previous scan and do not say anything about the overall status of the liver. MY IR went through the images on the screen and explained about the location of the lesions (yes, they are all over the liver on both the lobes). Does anyone here get annoyed that the radiologist report contains only one or two sentences "hepatic metastases are stable" or something like that? I wish they wrote more details.
Haven't heard from BevJen - I hope she is doing okay after her surgery on Monday. Bev, thinking about you.
Candy, it is a good idea to get the biopsy done now if it takes so long to get the results. In my case, tissue biopsy and liquid biopsy were done at the same time. Tissue biopsy had more detailed report than the liquid one. Have they scheduled a date for this?
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So just an update- I have been messaging MO nurse back and forth and talking with ortho clinic about the shoulder.
I asked MO nurse about doing liver biopsy now versus waiting a couple of months. MO wants to do it now as the genomic testing (Tempus) takes 3-4 weeks to get a report. Then yesterday I got a message from MO nurse that the radiology dept wants an ultrasound to view everything before determining if they can do a biopsy--- I guess size of mets, and where at, and other issues such as blood vessels, etc. So we have to schedule the ultrasound next. Then, if ok to do, schedule the liver biopsy after that.
The shoulder--- I was going to do the steroid injection, but my MO said to do only if ANC is over 800. So.... have to schedule injection, get CBC beforehand, and cancel if under 800. Then would have to try again. So..... ortho staff and I decided not to do injection and just do PT. But.... I want to get the liver biopsy over with first before PT on shoulder.
Lots of back and forth messaging last couple days. Kind of tired of it all.
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Candy. I don’t remember my Tempus genomic testing taking that long to get back. Also, you can call them directly and they will send you a copy. My liquid BX showed nothing either. I do hope you can get your BX soon. I was lucky not to have any pain from it and I also got to be out for it.
Yes, it’s frustrating when other radiologists read my MRI of liver or PET. IR is the one who gets it. Since my IR is not in the same facility as my MO, I usually get a disc and drop it by his office. I pay little attention to the report until he gets to look at the images. He will text or call me after he reads it.
Praying for all of us to have a TX that is successful at keeping our mets at bay.
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Nicole -- So glad you got good news! Very encouraging.
Candy - Sorry you're feeling jerked around. I hate that!
Polly and I just came from the oncologist. Looks like she'll be going on Abraxane as soon as the approvals and additional tests come in. I asked about Y90 but apparently there are way too many tumors in her liver for that to be effective. She's also going to start on Zometa to strengthen her bones since the cancer appears to also be in the bones. They want to do a scan to verify that and to determine how bad the bone mets are.
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BLMike. Usually MOs want to do systematic therapy first. But don’t rule out y90 until you are able to get a consult with an Interventional Radiologist.
I had so many lesions in my liver and still was able to get a y90.
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Mike good luck to Polly with the chemo hoping she does well with minimal side effects. I second what Grannax said about talking to an IR...Definitely do that on your own ASAP
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Liver ultrasound this Friday. I am tired of doctor appointments.
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Well you ladies have been with me through the worst...and now I want to share something....
The Father once again has shown me mercy and answered our prayers...I just got off the phone with my IR she said she reviewed the PET and RE-Reviewed the MRI and that area they saw uptake on the outter rim is just the Radiation Fibrosis she talked about and then she said the words I have always prayed to hear:
Nicole...you have no active disease in your liver right now!!!!!!!
Even though I know I have stage 4 and a new tumor can pop up any time even tomorrow...for right now... I got to hear that!!! I am on my 6th treatment line (if you count just 10 days of verzenio)....and I have yet to have a treatment work more than 3 months...so yea I AM HAPPY RIGHT NOW!!!!
I cant stop crying I am just so grateful...I need and want more time to change into the image of Yeshua (Jesus) and I still pray the Father gives me more time to make that happen.
Thank you all for listening...and sharing my sorrows, fears, anger and today..Joy...
PS: HOPE ....praying for complete success for your treatment tomorrow!!!!!
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yay Nicole !
I’ve been lurking and following along. What great news !
Mike , I’m currently on Abraxane and so far it has been working really well and I haven’t had any truly terrible side effects. In comparison to FEC that I had in 2018, this has been much easier. Fingers crossed it helps0 -
Mike - it’s also in my bones as found recently and I was upset about Zometa as it’s IV and I have only one decent vein and no other IV a treatment. They switched me to Xgeva injections, before we started Zometa and I’ve had no side effects.... which wouldn’t be the case with Zometa. Might be worth asking for Polly?
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Grannax2 and Nicole -- We won't give up on Y90 just yet.
BAP -- Thanks for the encouragement. This is Polly's first toe into chemo so we're pretty nervous about it.
Karen -- I'm so sorry to hear about it spreading to your bones, too. The parallel paths we are on on this terrible journey continue (unfortunately). We discussed Xgeva this morning but Polly's MO really recommended Zometa between the two for Polly. Neither Polly nor I can remember the rationale. Given that she's already getting IV, it'll probably be OK.
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I haven't responded in a long while but I check in occasionally and pray as needed as I read of your surgeries and hospital visits.
Nicole, great news! Yes, the Lord God is good!
Mike, I was NED for the last six months but now have some slight activity in bones, abdomen, and liver. I went almost a year on Xeloda. And Karen, I have been on Zometa for five years and have no side effects so it varies for each patient. With Stage IV, I never know when the next issue will arise.
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IntoLight, you’re absolutely right in that treatment SEs vary for us all and pleased that you’ve had such little issue with Zometa.
I think I may have now reached a more tolerable level on Capecitabine after 3 months of loadsanasties. All the SEs I had are still there but ‘dialled down’ to a level I can cope with. Now just need to see if it’s working!
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thanks BAP and Into the Light!!
In your pocket today Hope!
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Thanks all for your well wishes and support. Really does lift me up.
Dee, awesome news. I an so very happy for you!
Still having pain. Ugh. Tomorrow I start Gemzar.
Edited to add:
S3K5, I get very annoyed radiologists don't give complete info on the liver. Frustrating.
BLMike, wishing Polly great success with Abraxane.
Candy, I hear you about all the back and forth and dr. appts. That's my frustrating life these days, too.
BevJen, hope surgery went well and you're doing ok?
Hugs for all those struggling and a whoot! whoot! for all good news.
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bliss good luck tomorrow with Gemzar. Hoping you do so well and it works to kill cancer cells!!!
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Hey Everyone,
I just had my pet scan done and this is all they said for the liver. What does this mean? I don't see my MO till next Thursday. Just confused why there is not more details?
Incidental AC CT findings: Liver metastases not well demarcated on the attenuation correction CT.
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Jjzn, sorry I have no answer for you. A couple of us we're saying how frustrating it is the radiologists give so little description and details in a liver CT. Someone will be along to better explain I'm sure.
Nicole, thank you so much for your positive energy! Glad all is good for you.
Yay! I'm happy to report my pain and bloating are finally subsiding. I'm feeling much better for chemo tomorrow.
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Hello everyone. Thank you all for being in my pocket and for offering good wishes and kind prayers. It's Friday and my Y90 treatment is done!! The mapping/prep 10 days ago was a little more intensive than the actual treatment, because they had to embolize a few blood vessels and put in a coil to prevent anything from getting into my stomach. So the actual procedure yesterday was fairly short. And as I had mentioned before, they restricted it to segments five and eight, the anterior portion of the right lobe. So high exposure there but the rest of the liver should be well protected. I'm not sure what the side effects will really be since it's only day one, I'm assuming there will be fatigue and I hope not too much else from the list! Now it's just remembering to keep distance from my husband and the pups and just being careful for the next three days intently and for another four days with caution. I'll have a check up with the doctor in four weeks and an MRI in 10 weeks. Just posting a lot of detail, because this is all very new to me. Praying this procedure takes care of the two active tumors while the Verzenio keeps the remaining eight asleep. I did not have to stop taking Verzenio/exemestane in preparation for the treatment. I will find out in another 10 weeks if the verzenio is still working.
Nicole - how is your pain? Doing ok with starting A/F?? Hope you still feel the joy in your heart from your MRI results!
Bliss - so happy to hear the procedure worked! Praying Gemzar does well by you!!
BevJen - prayers everything is going well!
I am sure I missed a few - my apologies. Prayers and hope for my sisters and brothers on this thread
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