Liver mets: resection, ablation, SBRT, Y-90, anything else?

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Comments

  • elenas401
    elenas401 Member Posts: 170

    Hi NicoleRod: You said Halaven worked well for you. I may be going on it soon. It only worked a couple months? Did you tolerate it pretty well?

  • nicolerod
    nicolerod Member Posts: 2,877

    elensas...I don't know if we should talk about it here (since this thread is not for that) but yes it worked great and I had like...NO side effects except I had to shave my hair it was coming out in clumps. I only did 3 months bc I felt like it was stopping working month 4 bc this skin condition I get itchy (when ever tumors in my liver are growing) it seemed like it was coming back..but we werent positive..bc I had to stop treatment to have Y90...the Y90 was successful and my liver got to NEAD..but I had HORRIBLE side effects from it and had to then go off all treatment for 4 months!!! So during that time my I got a new tumor in spine and the other ones I had (C7 and Sacrum) grew as well. We then went to Verzenio (bc I asked if we could circle back and try endocrine therapy) sometimes after doing chemo endocrine therapy can work again... (I had only done Ibrance/Letrozole/Faslodex 2 years prior when originially diagnosed only worked for 3 months failed month 4)...but the verzenio after 10 days was KILLING my stomach so now we are trying affinitor...we startred at only 2.5mg for 2 weeks then went to 5mg (now its been 2 weeks) then we are gonna try to get to 7.5mg but I don't think we will be able to bc last week after only 2 weeks on the 5mg my ALT and AST doubled..so we will see..plus its not working all my spine mets hurt...I am running out of treamtments...5 treatments in 2 years already.... Anyway I really liked Halaven...

  • HopeandGratitude
    HopeandGratitude Member Posts: 520

    it's only been 3 weeks for me since Y90 and so far worse side effect is fatigue, which was bad and is slowly going away, and some nausea, which the meds helped. An early blood test at 2 weeks should no ALT, AST, or alk phosph increases, but my liver enzymes were all normal prior. I will know more at blood test at 4 weeks (next week) . Abdominal MRI in early July. Fingers crissed

    I agree with going with someone who has done this procedure a multitude of times. I trust my IR implicitly.

  • elenas401
    elenas401 Member Posts: 170

    Good to hear it worked well for you. I hope Afinitor works. My aunt with MBC is now NEAD and she was on Afinitor.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    hopeandgrattitude - glad you are on the rebound. My IR said 6 months out before scans would be telling for me. That scan said treated metastatic disease. It’s been over a year and My MO showed me the shrunken “dead” tumors on my latest scan. The radiologists don’t even comment on them anymore. Hoping you got perfect results!

    Dee

  • nicolerod
    nicolerod Member Posts: 2,877

    Hope so glad you are doing so awesome!!!! That is such good news

  • nicolerod
    nicolerod Member Posts: 2,877

    Well I am hopefully starting radiation on my sacrum this week. I have a LOT of pain now... I went from being fine to in pain every day in a matter of 2 weeks...it just stinks.

    Anyway I am praying for NO SIDE EFFECTS!!!

    REF: PROTON THERAPY not really a good fit for Metastisis.. I have been doing a lot of research its mostly used on a single tumor etc. I spoke to my RO this morning about it...and he said its the same exact radiation as the regular radiation its just delivered differently. He very rarely is able to use it on bone mets...

  • llbeanie
    llbeanie Member Posts: 1

    Hi everyone. I'm new to this website and thread. I'm hoping to run the treatment plan for my liver tumor by people who have experience with this sort of thing. It was a single 1.9 cm tumor discovered by pet scan a few weeks after initial diagnosis, and has responded very well to chemo + targeted therapy. I was very lucky to have a complete response to chemo by the time of my breast surgery. The most recent liver MRI showed it "faintly visualized". I am finishing up breast radiation next week. 4 weeks later I will have 5 rounds SRBT radiation to my liver. At the tumor board this week, 3 surgeons also recommended I have surgery a year after all my treatment is finished. (I am on Herceptin and Perjeta until the fall). A year will allow a reoccurance to show itself before they perform surgery. They are recommending both because I'm 36, this cancer is aggressive, and I have tolerated treatment well so far. Doing both will give me the benefits of both is the thinking. My RO said if I was in my 50s or 60s I would just do radiation. Has anyone done both SRBT radiation and surgery? Or just the surgery? I know nothing about what liver surgery is like, and wasn't expecting it to be an option. Thanks for hearing me out!

  • [Deleted User]
    [Deleted User] Member Posts: 760

    LLbeanie - welcome! it is wonderful that you had such great response to the systemic treatment. I can only imagine what you are going through. It sounds like you have a good team watching out for you.

    I was offered SBRT to my liver but was hoping to get a systemic that worked. So my liver tumors grew too big and fast to do SBRT. I still think it is a great option and had it on my lung lesion.

    From what I understand Liver surgery can be rough but doable. Since your team recommends SBRT first and surgery later that seems reasonable.

    I hope you get some other input.

    Dee


  • leftfootforward
    leftfootforward Member Posts: 1,396

    LLbeanie-


    I had liver surgery and did very well afterwards. I was out of the hospital within a few days and could do almost all my normal activities upon getting home ( I had 4 kids to take care of and husband was out of town).

    You can PM je cdd and I can provide more details.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520

    How high did people’s enzyme levels go up after Y90 Mine barely budged at 2 weeks but elevated at 4?2 weeks in AST (74) ALT (76) and alk phosphate (249). But these are really only Grade 1 so I am not concerned. Wondering if they tend to get lower after this.But I got hit in WBC. Anyone else gets hit on platelets (0.83) or WBCs (1.4)? Mine has and that surprised me. I have my 4 week check up tomorrow so will ask. Stomach area and under rib cage a bit sore. Getting strength back.

  • nicolerod
    nicolerod Member Posts: 2,877

    After a couple of months my Alk Phos has gone in the 300's and stayed...and someone I think SK35 said one of the IR's she consulted with told her that sometimes after Y90 your Alk Phos can got to 350's and stay there permanently......

  • HopeandGratitude
    HopeandGratitude Member Posts: 520

    thanks Nicole. I am not too worried about the liver enzyme elevations. I was more concerned with what is going on with my platelets and WBCs.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Hopeandgratitude

    I can't remember what systemic meds you were on. I started Afinitor right after Y 90. Afinitor made my white blood cell count and platelets drop low.

    Dee

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Hi everyone. I had SBRT to a single solid liver met in March 2021. The good news is at the 3 month scan shows it is dead.

    The bad news is during those 3 months, my liver developed masses in both lobes, ie, not solid tumors, but heterogenous large masses ranging from 2 cm to 10 cm.

    Xeloda had stopped working.

    IR wants Y90 now. MO wants weekly taxol after 2 week wash out. Time is critical. I believe that I cannot have both at same time due to toxicity to liver and it was not offered as option. My IR is afraid that if taxol fails, then the increased fast growth of masses would prohibit Y90. My MO is afraid of cirrhosis and harming future chemo success, plus the concern of mets growing elswhere.

    Feel like I am being caught between 2 hard choices. Do not have time for 2nd opinions.

    I will have initial mapping in a few days to see if tumors are even feeding from hepatic artery. If not, Y90 cannot be done and choice is clear.

    I just wanted to talk about it to my peers. All liver labs are normal, except an elevated SGOT and a rising CA15.3, so I am not in liver failure.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    SandiBeach

    Glad the SBRT whacked the tumor!
    What a dilemma. chemo vs Y-90. Thankfully you are proceeding to mapping to get 1st answer. You IR sounds very proactive

    I would ask your IR if he/she sees any incremental growth in the short time from your last scan to the mapping- I think that info would be important.

    My IR team saw rapid growth while on doxil during y-90 process. From last scan to mapping then to y-90, so I’m glad I did y-90 to give me time. FYI I did y-90 in the middle of doxil infusions. Then I quit doxil since it wasn’t working. Went directly to Afinitor and Faslodex. It gave me 6 months to keep looking.

    Can you get a PET to see if there are other tumors? It was only in my liver at y-90 and my biggest was 4cm but I did have micro metastasis which popped up in the lung 5 months later(SBRT to that-dead now) only in the liver again.

    This is a tough place- can’t tell you what to do but trust your gut! 🙏🏻

    Dee


  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Dee..you are so kind.

    My last PETCT scan was Feb 20 and only showed that 1 solid met in liver. So in March was the successful SBRT.

    Followup PETCT was 12 weeks later and liver now has 3 very distinct masses that are heterogenous (not solid) and range from 2cm to 10cm, plus 4 micromets.

    The follow up PETCT showed no other mets anywhere. The Abdominal MRI confirmed PETCT results. This has all been in the last 5 days: PETCT, MRI, Bx. My team just wants to move fast. I am very fortunate to have this help.

  • s3k5
    s3k5 Member Posts: 411

    SandiBeach57 , I understand it is a hard choice to make. I have seen most people have very good outcome with Y-90 than systemic therapy. I wish I had got this done earlier rather than wait for systemic therapy to take care of the mets (my MO's suggestion). I had microwave ablation to a single met (3.5 cms) in the liver in Oct2020. My IR had suggested I go for Y-90 rather than microwave ablation, since I had a few mets that could be resolved by this procedure.

    Between Dec2020 and Mar2021, my systemic therapies had to be stopped due to a bad reaction, hospitalization, etc. By Mar2021, MRI of liver showed a lot of lesions in the liver. By then the 'tumor burden' was too much and my IR said that Y-90 would cause liver failure.

    Based on my personal experience, if I had to make a decision again, I'd choose Y-90 over systemic therapy. I am sure everyone is different and some people may respond to systemic therapy better than I did. Just stating my experience here.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Thank you SK35..That is meaningful information.

    I really hope my MO and my IR get in the same room and work out the best plan for me. I don't want to get in liver crisis. Just want a few more years...

  • Rosie24
    Rosie24 Member Posts: 1,026

    Sandibeach,

    This won’t help with your decision, but it seems your docs are “staying in their lanes” and recommending the treatment that falls in their areas of expertise. I had a consult with a breast surgeon for a lumpectomy a while ago, and when I asked if she thought I should go ahead, she said “yes, but then I’m a surgeon”. You seem to have a good plan to start with the mapping to get more info. and hopefully the input from others here will also guide and support your decision. Wishing you a smooth path to the next step

  • CynMD
    CynMD Member Posts: 9

    Hi, All

    I just don’t understand why it is so difficult for my MO to accept IR on my liver. Both my MO and IR doctors are from JHU. I have two liver mets growing while I am on carboplatin and all other mets (bone and liver) are shrinking. It is so obvious to kill these two growing mets so that I can continue my system treatment.

    My MO told me there is no data supporting IR procedure on breast cancer. Why I need supporting data, I can be the data. There are so much new technology everyday, a big hospital like JHU should explore the technology not waiting for the data.

    Just so frustrating.

  • nicolerod
    nicolerod Member Posts: 2,877

    CynMD do you see Dr. Georgiades?? I did he is the Chief of IR at John Hopkins if thats what you mean by JHU? I used him for my Cryoblation...

    I used Chief at Medstart G. Wash. Hopsital for my Y90 she was awesome

  • CynMD
    CynMD Member Posts: 9

    NicoleRod

    Thank you for the information. I see Dr Robert Patrick Liddell at John Hopkins. I will try your IR at GW, what is her name?


  • nicolerod
    nicolerod Member Posts: 2,877

    CynMD Liddel is who BEVJEN on here see's.

    Dr. Nora Tabori...it is not GW.... it is Medstar George Washington Hospital...very easily confusing... If you consult with her tell her I said "Hi from your only patient that took 5 months to heal" lol

  • BevJen
    BevJen Member Posts: 2,341

    Nicole,

    GW hospital and Medstar GW are the same hospital. Medstart took them over like they took over G'town.

    Cyn, Dr. Liddell is very conservative doctor. If he won't do it, and you want to stick to JHU, I' question the doc Niole saw.

  • nicolerod
    nicolerod Member Posts: 2,877

    Bev..I don't believe Dr. Georgiades will go against Dr. Lindell..but she can definitely try..

  • CynMD
    CynMD Member Posts: 9

    BevJen and NicoleRod

    Dr Liddell already agreed to do the microwave ablation for me last week, it’s my MO doesn’t want me do that.

    Her email said “Our breast surgeons reviewed the data on microwave ablation, most of the data with this option is with cancers other than breast cancer.“

    I don’t understand how come different doctors in the same hospital can have such different opinions. I believe JHU must have did lots of microwave ablation on breast cancer patients, what data are they talking about.

    Finally my MO allowed me to go for microwave ablation, but when I call back to Dr Liddell’s office, the nurse told me because my oncologist want me do system treatment, they have already pulledme off the list, and I have to wait for Dr Liddell revisit my case before they can schedule me.

  • nicolerod
    nicolerod Member Posts: 2,877

    CynMD... Reference the data..I think that is a question for you MO ...why not ask her can you please show me this data. Also I do want to tell you I know that my MO will NOT go against a IR or RO...if they say they don't think its something I should do...she is very by the book with that.

    I am very confused...I thought you said your concern was liver mets (a lot of them) but above you say only 2 are not responding? It also t sounds like now you are talking about MA for the breast? If you are talking about for the liver they probably do not want to do it bc you have a lot of lesions and MA can and will cause a certain level of distress on your liver so if you have a lot of tumors in there but only 2 not responding maybe they feel your liver is already being "taxed" so-to-speak...?? Also I don't know what the protocol for MA is...but I know for Y90 you must go off all chemo for 2 weeks prior and 2 week after (most times.) the minimum is 2 weeks total... are you stable enough to go off meds for 2-4 weeks? I wound up being off meds for 4 months after Y90... Its a risk even with MA bc if you wind up having bad side effects, if you liver is too taxed they will not be able to give you chemo or any other cancer treatment...and then ...that could be very bad for you. I think that is probably part of their thoughts as to why they want you to get a systemic therapy to work first. If you have a high burden of disease in your liver, taking you off meds even for a few weeks could be detrimental.... What are your liver numbers ALT, AST, Bilirubin, ALK PHOS?

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    I have seven questions.

    1. Did Medicare (the original) pay for Y90? It is still considered off label.

    2. Did anyone have both lobes done, assuming 4 weeks apart?

    3. Did anyone with both lobes involved with mets, just do one lobe, then go back to systemic chemo for 2nd lobe?

    4. When did you resume systemic chemo or targeted treatments?

    5. Anyone have systemic chemo at same time of Y90?(can only find literature on Xeloda used at same time)

    6. Anyone get a cirrhotic liver?

    7. Did anyonre progress elsewhere while undergoing Y90 and what did you do?

    Thanks, S

  • BevJen
    BevJen Member Posts: 2,341

    Cyn,

    There must be something going on at Hopkins re policies regard MBC. I had 3 microwave ablations with Dr. Liddell. Two of them were planned. The third was a redo. The first one came out of a review of the liver tumor board providing suggestions for my liver. My MO had to facilitate that review. For the other ones, it was direct contact between Dr. L and myself -- and of course I notified my MO.

    With my most recent issues, my MO took it upon herself to contact Dr. L to see if something could be done because I apparently have an additional 2 tumors in my liver. Dr. L wrote back to her and said that my films show progression, and so he can't offer me anything at this time and urged her to use systemic treatment.

    So it sounds to me like there might be some policy changes going on there. If you can get to the bottom of it, you might be able to be treated at Hopkins. Otherwise I'd talk to the GW people.