How are people with liver mets doing?
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Thanks everyone for the support. What was I thinking scheduling a scan on a Friday? Lol. I'm expecting I'll receive the report in my portal on Monday, but if not I will call to get it. I like knowing beforehand and not being surprised.
Dee, congrats on finishing SBRT. I'll chime in that I haven't felt any pain in the liver area so far.
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Bliss praying you do not have progression!!! I am like you, I think my treatment is not working..but not bc of tumor markers (mine never move) but because I still have my same pain in liver and sacrum.
Dee...yes I have liver pain. Right now its where the tumor that is close to the colon wall is...which gives me pain on my side right at the bottom of the last rib. If I get gassy it hurts too ...then when I pass the gas it lightens up. When the 2 tumors that were cryoblated hurt that is up higher right below where the bottom of my boob would be but behind the ribs.
Where is your pain?
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scans came in , new lesion in 1st neck better first noted vertebra notes and liver lesions increased .
I want my mother to come to USA to resume her treatment in md andreson . It’s very depressing the tumor markers showed low but the scans aren’t correlating
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NicoleRod, thank you for your prayers. I'm so sorry you're having pain, but hope it's the cancer dying.
Faripari, I'm so sorry your mother is going through so much. It seems for some low or high markers may not mean anything and it's the scans that matter most. Are you able to get her to the US for tx?
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Her whole liver is involved and her 1 vertebra at skull base has lesion in it ? Ibrance dint work at all , does anyone among u all have similar diagnoses and still surviving odds ? Is there any chance for my mom ??? my eyes are swollen crying
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Has anyone heard from Jaylea?
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I haven't, but was just wondering about Jaylea today myself.
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my last CT scan results are in. No new Mets and no visible old ones in my liver. I do have fatty liver disease. So I BBC am relieved.
Had my brain mri on Friday so set to get the results on that tomorrow.
I was denied treatment Wednesday due to severe anemia. I had two bags of blood on Thursday and am feeling a little more human. It amazes me how bad I was really feeling. I guess having 4 kids home 24 hours a day doesn’t leave me any time to feel bad., my hemoglobin was 6 and now things like my pain, lack of sleep, increased fatigue, nausea make sense.
now to figure out why I got so anemic. I hope it’s not my combination of treatment as I really need this combination to work.Think of you all often.
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leftfoot, great results! Lots to celebrate there. What is the treatment for fatty liver disease or is it something that is just monitored? I can't believe your hemoglobin was down to 6. That is really scary. Not sure how you handled a house full of kids with that. It is shocking to realize how much better one can feel after a transfusion and how bad things were before the transfusion. I had a hard time with anemia for a long stretch. There was a point I wasn't sure if I would be able to continue with more treatments for much longer. Even after I stopped the chemo that was causing it, it wasn't getting too much better after 6 months. It then started to tank further when I started another chemo. I never thought that iron would help given I had treatment-induced anemia and not standard iron-deficiency anemia but I found that when I started a combination of iron and ashwagandha, things turned around for me. I have been able to keep my hemoglobin in double digits since then at 10 or even 11. I didn't think that was possible. The ashwagandha also helps with all around energy as it facilitates thyroid function. If you are struggling with hemoglobin in the 6s, it may be worth trying at least the iron part if you haven't tried iron already.
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thanks JFZ
my oncologist snd ER husband not so worried about the fatty liver. If you look it up they say lose weight, eat right, exercise and you can improve it.
I’ll look into What worked for you. I was/am miserable at such low hemoglobin levels. Good news is what RBCs I do make are good. I just don’t make a lot of them or enough to counter whatever is causing my anemia. Thanks for the suggestion.0 -
Leftfootforward- Thank goodness for the good scan report. Glad you are feeling better after the blood transfusion too. Now to keep the blood up. Hoping for another good result with the brain MRI.
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everyone talks to everybody here , it’s sad I posted twice and no one spoke to me . I posted how I felt bad abt scan and stuff . No one gave an inch of courage or any good word . Is my situation that hopeless ?
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Faripari,
I don't think people are ignoring you -- I do think one poster asked if you were able to get your mother to the US for treatment? You had mentioned MD Anderson but if you are in Chicago, Northwestern is also a great cancer hospital and has excellent practitioners. You might want to look into that.
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Faipari. I agree with Bev Jen about Northwestern. In fact my favorite MO of all time is there. Massimo Cristfanilli. I went to him at MDA.
I didn't respond because I don't have a frame of reference for what she's going through and what TX is available in India. Also, I have never been told what percentage of my liver had mets and I had a lot. Of course I always mention y90 as a local TX because that's what I have had.
Tell me again what TX she has already taken. 💞
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Faripari- With your mom's liver enzymes getting worse and the scans showing worsening liver tumors despite being on Ibrance/Arimidex, I think you should try to get her to Chicago with you. There are good hospitals in Chicago and not too far travel from other options too. I am sorry if you have not had the support from us. I don't know about the care available in India.
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Farpari...listen... Stay Calm...I failed on Ibrance as my first treatment a year ago..there are OTHER TREATMENTs... I am on my 3rd line of treatment. First thing you need to do is get your mother to a cancer treatment center or oncologist to get some treatment options. No one here can tell you where to take your mom...that is something you need to decide. Once you do that if you have questions about the treatment options her oncologist suggests come here and ask us we will all help the best we can.
No one is "not" answering you ...we are all here answering questions...we all have questions. Maybe people do not have an answer for you and that is why they are not answering. I would focus on getting your mother to an oncologist for treatment plan first and foremost.
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farpari/
I apologize. I didn’t respond because I haven’t responded to anything late it’s it was all I could do to get up I. The morning lately.this really isxx xx s great group NBC who answers questions when they have the knowledge to do so. I am sorry about the current status of your mom.
I agree with the rest of them. If you can, seek other opinions and we V wil be here to answer what questions we can.
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farpari,
I hope you can get your mom to a center of excellence to get assessed. Progression is always scary. Prayers that she gets a therapy that works better.
Nicolerod
My pain is at the bottom of the right rib area. It is more noticeable lately. I also have lots of gallbladder stones, but the pain is not like an acute gall bladder attack(I’ve had a couple of those after eating very high fat food) The pain radiates to my back in the liver area. it’s mild, when sitting awhile- can’t get comfortable but it doesn’t need pain meds
Thanks everyone here for such great support. I know we all don’t check everyday here but try to post when we can. you all are the best
Dee
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Faripari, many of us are popping on and off the site, in and out of different threads and may not have time to read all posts and respond. I would be willing to venture everyone responding now has had many a post where people didn’t respond. I definitely have! It is nothing personal and sometimes is just a matter of timing, etc. This is a positive place to support each other and we are all just trying to do the best we can with our circumstances with Stage 4 BC and our other obligations outside of these boards. I have a 5-year old and am often too busy to spend the time I would like on the boards.
If you look at the signature blocks of us posters on BCO, you can see the various treatments one has taken. Many have taken Ibrance and moved on to other treatments and are doing just fine Inevitably, everyone fails Ibrance at some point. Your situation is not hopeless!
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Dee...yup...sounds like exactly what I experience. You tumor may be close to the colon wall like mine hence when you are gassy (and may not even think you are) it can aggravate it. Yes it's just like a little nagging pain nothing that requires pain meds...and THANK YOU GOD for that...bc we all know how consitpated I get the last thing I need is pain meds.lol lol
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thank you so much everyone for replying .
grannax2 , i updated the tx , it should show up below my message now.
Candy-678, i am so eager to get mom to usa , my dad and everyone in india are trying there best but the international flights are not yet open. helpless situation
JFl , alabamadee , leftfoorfor... thankyou for understanding and replying
As of now i booked an appointment today with indian oncologist which is a bit far from mom's home in india , i live in chicago so i will be staying awake tonight (timezone difference) so that when my mom and family goes for the visit i can be with them on phone to answer or ask questions with doctor. That hospital which they will be going has Covid patients too , i am a little scared but instructed them to be careful and my younger sister is going too so she will take care of that . the cases are at peak in india (hyderabad) its very bad situation , the government is deciding to impose lock down again , Lord knows when the flights would re-open .Hope everyone stays safe.
i uploaded and sent all pet scan images into system at md andreson thru a good friend who works in image dept at MDA. Tommorow morning i will send message in mychart and ask for a televisit online consultation from the MO at MDA who sees mom.
i will discuss with you all what the indian oncologist says , thankyou all for being there.
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Faripari, just checking in to this thread and read your frustration.
I am impressed you have managed to get an International MO consult along with a visit with another MO in your mom's area.
With stubborn liver mets and it now seems to be in her bones, maybe the next treatmemt is systemic chemo until she is stable and decreasing via MRI and bone scans?
From her treatment history, it looks like one large liver met. Could a local treatment to liver, like Y90, plus rad to bone sites be an option?
Once you get hear input from International consult, can she be treated based on that advice?
How old is your mom? I am 63 and I had systemic chemo (adriamycin/cytoxan) for my widespread liver mets for 3 months. Once stable, I was on Ibrance/letrozole 3 years. I am now on Xeloda, which I see these treatments did not work for your mom. Have she tried Fulvestrant injections?
Did she have genetic testing to check for actionable mutations? Like PK3?
It is an exhaustive, emotional roller coaster for everyone, especially a family member who is doing everything to find medical help during this pandemic.
Your mom is blessed to have you. She must be proud to know you will fight for her. There are so many of us that have been near death, but our bodies are amazing.
Keeping searching..you will find the right treatment to give your mom precious time she deserves.
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sandybeach57
Thank you for the detailed reply .
she went to indian MO yesterday , i spoke to him over the phone too . till now my mother never had genetic testing , so he ordered a liver biopsy to get it tested for hormone receptor status (immunuhisto chemistry) and genetic testing including FGFR1 and P13K and some other genes , he called it NGS testing (next generation sequencing). He said its very unlikely for your mom not responding to ibrance coz 87% do respond to it , which is why i think its important to know about the tumor biology.
So mom gave her blood to get tested for COVID , HIV , Hep-c , its a requirement before any invasive procedure, soon when test results come out (hopefully no scares here ) biopsy will be scheduled. as per plan indian MO said that if the hormone status stays same ( ER PR positive HER2neu negative ) then she will have more treatment options and he would probably prescribe PIQRAY(alpelisib) if things go as predicted. i hope her hormone status stays same and there is no scare there.
This will take 10-12 days for biopsy results to be in hand . till then she is on ARAMIDEX daily ( she discontinued ibrance) and the doctor precribed her FULVESTRAT injections 5ml on each butt on Day1 DAY15 Day28 and he also prescribed XGEVA(Denosumab) injection and some calcium and multivitamin pills. i asked coz she isnt on any hard chemo/anticancer pill will there be flare ups till we get biopsy and nesxt line of treatment to which he answered No . I made my mom take the injections yesterday itself.
answering your question she already went thru AC soon after her lumpectomy and axillary dissection surgery and after AC she was given TAXOL and then radiations to her breast and axilla.
Besides that i uploaded pet scans and blood labs to MDA mychart and system and the MDA oncologist care team has seen the message but not responded yet , but as far as i interacted with him he always advices to go meet a local oncologist coz obviously my mom is not in america right now so i will let be and give him time to respond till i wait for the biopsy results .
one the biopsy results come i will have online consult with him and ask him what his next line of treatment would be now that he knows my moms tumor biology and genetic results . i will update both indian MO and MDA MO line of treatment once i get biospy and oncee i get a word from MDA.
i am still waiting for international flights to open up but also working to get next line of treatment ASAP so that she starts taking the pills and gets here , once she is here i am planning to go MDA and also consult Dr Cristofanilli in chicago and move her here with me in chicago , (texas is scary and lot a of travel and for some reason i am not liking MDA responses coz they kinda abadoning the patient or playing safe, i just dont know how to react to them ,my mom came all the way from india to MDA, paid out of pocket for everything, we sold off so much assets just for mom and now all we get is to wait for msgs on mychart ) .
till then i am just praying and giving my mom strength . she is much stronger than i am but when she sees me getting quit she feels that now things are going downhill , my bad i sometimes cant control my emotions with her , you know the scan results day, its always low feeling and then u get up gather your strength again to gt back up to fight the next day.
one thing really disturbs me is when the indian MO said that if her hormone status changes then its less than 2 years for her and if the hormone status stays same( ER PR positive Her2neu negative) then you can add another year so total 3 years . For some reason i dont want to believe in these stats and i want my mom to proove these stats wrong .
Did anyone outlive the doctors predictions ?
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Dear Faripari,
If you are going to try and establish a connection with Northwestern, where Dr. Cristofanilli is, you might also think whether, when your mother can get to the US, or even before, if you should consult with an interventional radiologist. There is an EXCELLENT one at Northwestern. His name is Dr. Robert Lewandoski. I think if you would contact him, and if you could get copies of your mother's liver scans to him, he could possibly suggest some local procedures that might work to help her. Some of us on these boards have had various such treatments, such as microwave ablation, cryoablation, Y-90, and bland embolization. It is possible that she might be able to have this done in India, if they have interventional radiologists there. There is another thread about liver interventions on Breastcancer.org. You can find it at:
https://community.breastcancer.org/forum/8/topics/...
That might give you some more ideas for your mom.
I also think that you should know that many of us here would say to you -- no one can tell you when someone will pass away. And no doctor can tell you that.
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BevJen
sure i will get in contact with interventional radio oncologist in india thru my friend who works under him i will get insights from him and when my mom gets back her biopsy test results i will ask MO personally about doing Y90 along with a anti cancer pill (i dont know if both treatments do happen side by side , will do my study and research it )
besides that i will try to get in contact with northwestern radiooncologist Dr Lewandoski but how is it possible , my mom is in india , should i book an appointment with him and go meet personally and show him reports and keep mom on video call ? is it allowed that way ? if thats so then i will meet dr cristofanilli also and get second opinions from him instead of waiting for MO second opinion from MDA coz they are not replying on my chart (and mom was under treatment at MDA before going to india ).
give me ideas
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Faripari,
I think that if you know of an interventional radiologist in India, that should be your first step. Y90 is only one of the possible treatments. Here, the medical oncologists would do systemic treatment (pills, etc.) and the interventional radiologist would do local treatments such as those talked about in the thread that I posted for you.
Also, if you want to talk to doctors here about your mother's treatment, you can call over to Northwestern (aren't you in Chicago?) or you can email Dr. Lewandoski. His email is:
r-lewandoski@northwestern.edu
Dr. Cristofanilli's email is:
m-cristofanilli@northwestern.edu
I know that they will want your mother's scans (probably not just the reports). Beyond that, I don't know how they will proceed -- whether you can meet with them, or if they would do a video appointment with you or your mother. You will have to contact them to see.
Good luck.
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Thankyou BevJen for the lead .
I live in chicago . i will first e-mail them . If they respond then well and good orelse i will meet them in person thru an appointment. As far as scans are related i can get a CD soon and i do have all reports scanned in my computer.
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brain scan was good. RO thought it was the best scan I’ve had in years. So relieved. We have one thing to watch but he thinks it’s scar tissue.
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LFF, I am very glad to hear it. I haven’t been reading and posting as much lately, but you have been on my mind. Sending lots of love and wishes that life will get easier for you. You have been through so much.
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Dear LFF, wow so many hugs go to you and your beautiful family! Saulius
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