How are people with liver mets doing?

thrivingmama

gum doctor - I have heard good things from doctors and anectdotally about IMMU-132. I also was recently on Halaven and found it great for quality of life/side effects. It also worked for me for a while.

Nicole... thinking of you as you get your scans/results. Had my pet/ct this morning too!

JFL

Thrivingmama and Nicole, you are in my thoughts as you hang out in "scanxiety land" for the timebeing.

Grannax, Halaven would be the next obvious choice for you based on standard protocol, assuming your MO is going with the standard. However, there are many other chemos used for later lines of treatment in breast cancer (which I know from experience!).

Gumdoctor, you deserve a break. Too much being piled up on you. I cannot even imagine the feeling that must have overcome your body when you first learned/believed you no longer had insurance. Just an awful and traumatic mistake.

thrivingmama

hi all. my scan showed significant progression in liver. tumors have increased in size and numerous new liver mets. since my recent biopsy showed ER+ again, the possibility of ibrance/faslodex is on the table. but given the extent of the progression, consider ixempra.

anyone have any experience with Ixempra for liver mets? what about ibrance/fas in a fast growing, many mets in liver situation?

thank you

NicoleRod

Thrivingmama sorry to hear of your progression... I was only able to do the CT bone scan as the other BRAND NEW CT machine broke....I will go back Saturday morning for CT of Chest / Abdomen.....

thria157

Hi All,

I am writing on behalf of my mother. She have had bone mets the last 6years and liver since march.

She was on abraxane the last few months but the todays scan revelled that the 5 tumors she had last summer became 100, while CA15:3 was going down.

just avoided a liver failure the last minute. However her liver is very sensitive at the moment - so prob she is not able to take any chemo.

The doctor told me today that she has 2-3 months left.

This is my last attempt to see if there is anything else that she can try. Are you aware of any other treatments that do not harm the liver ?

The ONC said that she can't really take chemo or radiation anymore because of the sensitivity of the liver.

Thank you in advance

NicoleRod

Get your mom on Milk Thistle and I would take a little extra this is for the liver. What treatment was she on for the 6 years with bone mets??

Kattysmith

Thria, my heart goes out to you and your mom. You should see if she can get at home palliative or hospice care, so she can be kept comfortable and it will also give you more peace of mind, even as you continue the search for something that will help support her liver.

Wishing you both comfort and care,

Katty

thria157

Thanks so much for this.

She has tried almost evrything. Xeldona, ibrance, everolimus and recently she was on Abraxane.

What does the Milk Thistle do? do you recommend any specific product ?

thria157

Thanks so much for your response.

Is there anything you are aware of that doesn't bring liver toxicity that she can't handle at the moment?

thria157

What I struggle to understand is how is it possible that the 15:3 was going down on abraxane while the liver tumors were expanding fast.

BevJen

For some people, tumor markers test are not very accurate. There are folks on BCO that have never had any variation in their tumor marker tests, yet they are now stage 4. For others, tumor markers are very accurate. It's a problem with the reliability of the test -- scans are much more accurate, although they have their own issues, depending upon the site of metastases.

BevJen

One more thought -- I don't know where you are located, but you could possibly contact the Block Center in Illinois -- the lead there is both an oncologist and an integrative medicine doctor, and it's possible that they could provide some support or thoughts. Alternatively, if your mother is not being seen at a comprehensive cancer center (as opposed to a smaller or single oncologist practice) you could seek out a second opinion at one of those.

NicoleRod

JUST FYI...my tumor markers have never moved ever they have read normal since day 1.

thria157

I've been suggested to do a molecular profiling examination that will determine with great success the exact drug that will work.

Does anyone have experience with this kind of examinations?

Based in London. I know TM are not very effective but till she had the liver mets they were pretty accurate for her.

leftfootforward

had to have a surprise CT scan on Wednesday. Just got the results. For the first tine in as long as I can remember probably a year where I’m scanned every 3 months, they can’t see any tumors!!!!! I know the cancer is still there but I’m estatic they can’t see it anymore.,

it was great news as I was just put on steroids as my team thinks the headaches I’ve been having are from the untreated Mets I had in March. Send to be helping. And I go for the new treatment in 2 weeks.

Things are finally turning a corner for me after over a year of really hard days.

May you all have your moment of relief soon or continue to have a good time of stability.

Gumdoctor

Hi All,

Just wanted to let you know I got into the study arm of the study. I start on IMMU - 132 on Monday. Report time is 0700. Looking forward to it.

Gumdoctor

BevJen

Gumdoctor -- Good luck on your new treatment. As for the 7 am start, well, that's another story. Hope you are a morning person.

BevJen

Thria,

Are they talking about something like a Foundation One test? Where they test a piece of the tumor? That test takes a few weeks to get results, but they will lay out a variety of drugs that could work, based upon mutations in the tumor. Otherwise, not sure what you are describing, but I'm sure someone here will know.

Also, if you are in London, have you tried consulting with Care Oncology? They are based in London and are using repurposed drugs for cancer treatment.

Rosie24

Gumdoctor, good luck! Hoping for IMMU 32 to be tough on the mets but not on you.

thria157

Hi BenJen

yes its exactly that. The ONC suggested a company called Datar.

Thanks for sharing the cancer oncology clinic. I read their website - but I am not sure whether they offer additional treatments or main treatments.

NicoleRod

LEFTFOOT OMGOSH I am SOOOOO HAPPY FOR YOU!!!!!!!!! SOOO HAPPY

I seriously can only imagine getting that news !!!!! Nothing but happiness for you!

I unfortunately was suppose to get a call from my doctor with results of my CT Bone Scan (baseline for just starting Xeloda) and she didn't call...the nurse told me at 1pm today she had my message and results and would call > that led me to believe there was something new (bc if there wasn't she would have probably just told the nurse to let me know it's unchanged)....and since I have been off all cancer meds for over a month I am not expecting good news... Anyway she never called I love her and she's always on the ball...but I really needed to know. Tomorrow morning CT of Abdomen and Chest

Topacio

Hi,

I hope everyone is doing well.

My doctor has suggested to me to go into ADRIAMYCIN for a few times.... I scare because of the side effects, she also recommend dox????

Can anyone that have this Quimos give me some advice please.... I am really desperate, I have to make a decision soon.

Apreciate any advice, thsnks

JFL

Nicole, it is just cruel to have to wait for “the call". I don't think nurses can ever communicate scan results, even good results. I hope your MO did not get back to you because there was nothing notable. Good luck with your upcoming scan as well. Even if your scans are not great, you were off treatment for a month but are now on X, which should shore things up pretty quickly.

Left foot, wonderful news!!! So happy for you.

Topacio, Adriamycin (doxorubicin) can be tough. I am curious why your doctor would recommend it as it is typically given in the early stage setting and not as often in stage 4. Doxil (liposomal doxorubicin) is a different story. With the liposomal formula, all of the tough side effects of Adriamycin are avoided - no hair loss, no major nausea/vomiting, no extreme fatigue. The primary side effect of Doxil is rashes that typically present during the first few cycles and then disappear: I took Doxil for 9 months last year with no port. Very tolerable drug. Due to the liposomal formula, it continues to circulate in one's body for several weeks and therefore only needs to be administered every 28 days.

ShetlandPony

Topacio, Adriamycin is a brand name for doxorubicin, nicknamed the Red Devil. Doxil is a brand name for doxorubicin (liposomal). It is somewhat different because of the liposomes, more slow-release, and I think that stage iv patients are often prescribed Doxil as it is easier on the body. Perhaps you can ask your doctor if Doxil is what he/she is suggesting. It is given every four weeks. I have had one infusion and feel fine, albeit tired. I use cold gloves and socks, and suck on ice cubes, to help prevent neuropathy.

ShetlandPony

Leftfoot, WOW! I’m so relieved that you’re taking a turn for the better.

Gumdoctor, YES!!! You needed a break and this may be it.

You both made my day.

Kattysmith

Gumdoctor, that's great. Even though I am no longer in my clinical trial, you should join this forum I started - lots of good info and support!

https://community.breastcancer.org/forum/8/topics/868597?page=21#idx_601

LFF - congratulations!

candy-678

Woohoo Leftfoot !!!!!!!! Way to go !!!!!!!!! Love the news.

Gumdoctor- Prayers for you for Monday and beyond. Study arm? So are you getting the drug? Keep us informed of how you are doing. Posting here? since no thread for that treatment.

Nicole- I hate when they don't call. They do not understand our fear. Prayers for you. In your pocket for the CT today.

NicoleRod

Thanks Ladies and Thank Candy...Scan done...they took my blood to test before injecting the stuff and something I think he said creatine??? I can't remember he said was a little high??? He used a little machine..like ya know when they prick your finger to check sugar?? don't know if that is from the Xeloda...but made me nervous. They did inject it anyway and I did the test so now the wait is on. Does anyone know what that might have been that was high?

leftfootforward

nicolerod- I am dory you have to BBC wait for results. I am going with that you had good results because they usually call with bad ones when they get those.

As far as the test, they check kidney function before using contrast. They are making sure your body can process it. creatinine is what they check. If they gave you the contrast then your kidney function value came up within the value they deem safe.

Sorry you are dealing with such uncertainty.

Hug

NicoleRod

Leftfoot...thank you....so now I think I am seeing some puzzle pieces fit together!!!!! So the other night I kept having twinges of pain in my right kidney...it wound up going away...maybe the Xeloda is affecting my kidney numbers??? ok just looked it up and Xeloda is primarily processed in the liver not the kidney...