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How are people with liver mets doing?

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Comments

  • Anewbreath
    Anewbreath Member Posts: 122
    edited July 2020

    Faripari- you are a wonderful daughter and I’m so very sorry for your loss. Wrapping you in prayer for peace and strength. Hugs.

    Nicole- you are receiving very good advice here (I’m taking notes for my future possibilities) your MO sounds completely confident about your situation and you have some good options that can be game changers for those darn mets! I wanted to share that I was Originally diagnosed With bone /liver/lung Mets. With cervical/lumbar/thoracic Mets that weren’t causing me issues and thankfully continue to remain stable. Im praying that you will kick back those liverMets with your next treatment. Stay strong under His wings, dear.🙏

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    thanks Anew! Amen! I just finished reading Psalm 31 verse 2&3



  • cure-ious
    cure-ious Member Posts: 2,874
    edited July 2020

    Hi Nicole,

    I misunderstood, thought you were planning to go onto Abraxane and Halaven, and which is a combo they sometimes use if they suspect the cancer is resistant to taxanes. Regarding eribulen, the SEs do not sound good, but an fgfr inhibitor would be needed to try to make the cancer respond to I/F

    Sure they want to hit it hard, but I'd ask your MO what the plan is if it doesn't work for long? Might as well get her looking at clinical trials because if it doesn't work you would be even further back in line. This situation feels reminiscent of kattysmith's experience, where nothing much had worked for long after I/F, and she said her MO considered chemos but doubted they would work either; instead they put her on an immuno trial which worked for nine months and after that now she is sensitive to xeloda, where they did not think she would have been before the trial- I wish I understood their rationale, but whatever it was, it worked. Good Luck!!!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Cure-ious...thanks. So I heard the side effects for Eribulin are much easier than Abraxane and its 2 weeks on 1 off the abraxane is 3 weeks on 1 week off ...hrmmm. She is looking at all the trials I gave and is definitely willing to go to that....eventually. I know about Kattysmith that was awesome. Everyone is different. but...I should have been clearer here... I was the one that wanted to start with the easier stuff as far as Xeloda and Doxil...I asked her to do that. Who knows she could have went right to Eribulin or Abraxane and one of those could have worked. I wanted to go with those because they were easier than E or Abraxane. I am just glad she is just willing to go to a trial.

    She even offered for me to go for a second opinion when she saw how defeated I looked yesterday and she said she would be happy to get all the paperwork together for the appointment and even see if (whoever I pick) can get me in soon. I love her and that is important to me. I do feel that she wants to save my life or even prolong it. This is all so hard. I mean...how many oncologists call you on their drive home at 630pm and stay on the phone with you for over a half hour? I gave her over 6 -7 trials and literature to look at she read them all...she brought them into the appointment and had notes on them. That kind of says a lot to me. Believe me..I want to try immunotherapy...I DO 100%. I hope that something will work and if it does thats great. :) but I do agree with her that I would rather get in an Immunotherapy trial that is at least Phase 2 or 3. NOW..if I was Stable...I wouldn't care if it was Stage 1. You are probably thinking "well if you don't know if E or Abraxane will work what's the difference if you don't know if the immunotherapy will work"...the difference is it does take almost 2 months sometimes more sometimes a little less to even get in...I know this because 2 of the trials I want I emailed and that is what they told me. So i would like to get at the very least stable if I can then apply. :( Im probably wrong here...I mean you are much smarter than me with all this stuff thats why I am so grateful you helped me look at stuff :) ....but Again..this is just so hard. :(

  • cure-ious
    cure-ious Member Posts: 2,874
    edited July 2020

    Agreed on all of it, Nicole!!! And she really does sound wonderful,it's just frustrating our trials go so slow and are so restrictive about what they will test, who they let in and how long they make people wait...

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2020

    Nicole

    Can you at least get on a trial waiting list? I signed up everything but the consent form - sent records, dr notes, cd of all the scans for one of the Neuroendocrine trials I am interested in. They are keeping my records and checking in with me. Wewill push go when my current line fails. I may end up on a waiting list even then but that works for me. Knowing it is in my bucket is reassuring.

    Dee

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2020

    Dee,

    I know you posted that for Nicole, but it's great information to have. It seems that you would then be more ready to get into the trial without having to wait for all of that info to transfer. Thanks for posting.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Bev and dee...the trials I emailed are actively recruiting..but the process of screening..is what takes 2 months (give or take)...I don't need to get on a wait list and even after that 2 months..then they have to do in person screenings and testing.

    My husband and I made a decision today......

    I am decided NOT to do the biopsy. The IR told my MO yesterday that he doesn't think it will be possible to get the sample from the NEWEST tumor..bc its very tiny. We got in the car today to go get the COVID test (that I need before the biopsy tuesday) and my said...ya know..maybe this is wrong... Maybe we should wait and see if chemo works...if it does great...if it doesn't then maybe the small tumor will be large enough to get the sample. There is no point getting a sample from a tumor that has been there for over a year and half and from when they took the original sample for F1 a year ago. I totally just felt in my gut from God...I agree. So I emailed my MO and told her that. She wont get it until Monday. Also I want to discuss the chemos... ****SIGH**** :( ..... I just don't know if Eruiblin is going to be a heavy hitter... she says it has shown to be very effective against liver tumors particularly...but...I been thinking about what Saulius said...Why not go to a real heavy hitter 1st..hes not the only one that feels that method can be very good. Hes talking though about taxane "raw, not nab-paclitaxelo, at least paclitaxel but I'd say docetaxel is best"....so I want to ask about those.. here is my issue though...she will keep me on it even if I am NEAD...I believe saulius wife's MO stopped it once she got NEAD...mine wont and I don't know how I feel about that. My plan was get NEAD then use the Jane McLelland method after. (but thats a whole other issue). Also I am going to ask her about Keytruda...which I did in last week but we didn't talk specifically about it at the actual appointment. I think it can only be perscribed right now if you are TNBC or if you are HER2- with HIGH tumor burden. *bev..you and I spoke about this I believe that is the article I sent to MO*

    Anyway I really would like to hear your thoughts asap about chemos.....types.

    :(

    Nicole

  • candy-678
    candy-678 Member Posts: 4,166
    edited July 2020

    Nicole- I cannot advise you on chemo types. I just wanted to say I think you were right going with your gut. When God is prodding you in one direction it is good to be receptive to that voice. You are in my thoughts as you decide the way you need to go.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2020

    Nicolerod-

    This is so hard- choosing what path to take next. Can you start the next drug and still get on the trial List at the same time? You are getting scanned in 2 months to see if it works. Waiting is a gamble so I understand.

    I heard an oncologist say he really liked using halevan. But I believe it is a microtubule like Xeloda. Which you’ve been on.

    FYI- halaven is not better than Xeloda

    https://www.breastcancer.org/research-news/halaven-no-better-than-xeloda

    Abraxane- Did you have a taxane for your original cancer? I did taxotere. My MO said she wanted my metastatic cancer to see drug it had not seen before. So we have avoided abraxane so far. But I read that MO’s usually add a second drug to go with Abraxane. Is that true for you?

    In researching my MRE11a somatic mutation I found this article that had some suggested/possible therapies-

    https://molecular-cancer.biomedcentral.com/article...


    So I am asking my MO to consider these 2 lines Which my cancer has not seen.
    -A PARP inhibitor
    -Combo of cisplatin and gemcitabine

    I believe you will get wisdom from your research and have a really good talk with your hubby and MO and come up with a plan that gives you peace. Prayers for your next line to kick cancers butt!!🙏🏻

    Dee

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    dee I've never had chemo eith my original cancer just lumpectomy radiation. My only chemos have been xeloda and doxil. The news you posted about havalen being no better than xeloda....wow great...just great....sorry dee if yiu read that it sounded negative to you..lol not toward you I think you know i love ya!!! Just Murphys law. Lol

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2020

    Nicole, You and your dh have consulted with your MO and discussed your options in detail. You have made an informed decision to try chemo, either Halaven or Taxol. There is no need to second-guess that decision. Both chemos are powerful and have produced good results. Please don’t over-think things now or let comments or articles discourage you. We on these threads can only tell you our own experiences or state what we have read. The vast majority of us have no medical training and we certainly have no access to your unique medical history. That is why you see an MO. She is armed with the knowledge to provide you with guidance and recommendations. Xeloda and Havalen are different drugs, so you probably should not try to compare how good one is vs the other. Xeloda did not work for me, but I know that Havalen is still in my MO’s possible treatments for the future. I was on Taxol. I was prepared for terrible SE’s, but I had none to speak of other than hair loss It was an easy treatment for me -no nausea or vomiting, no overwhelming fatigue. Everyone is different. I think that either chemo will be a good choice for you at this time when you want to knock down those liver mets. I hope that you are able to relax a bit once you have started chemo and settle into the routine. You are in my prayers

    Hugs and prayers from, Lynne


  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Lynne thank you for your post and encouragement. Plase understand..i don't think anyone is a medical doctor here i think we all know that. BuT..we are here to offer our opinions..suggestions..experiences...and i personally, welcome them all. That doesn't mean I will do it bc I think someone is like a doctor...but i will put considerable thought into opinions from those who have taken these chemos and /or know more than me about them.

    You are all my breast cancer sisters and family and I do want to hear everyone's thoughts on this from those that feel the same way about me. :)

  • jgbartlett
    jgbartlett Member Posts: 30
    edited July 2020

    NicoleRod progression with my liver mets saw my treatment change to Abraxane in February.

    The side effects weren't too bad. Crazy fatigue and some nausea but otherwise I handled it well. Had a scan after 3 months and unfortunately it didnt work for me and my liver mets and bone mets grew / spread.

    So in May I changed to Eribulin/Havalen. I am finding the SE of this one a little more difficult with fatigue, headaches, some neuropathy in my feet and a general blah feeling. My wbc have been low as well.

    I have my 3 month scan on Eribulin this Wednesday so really crossing fingers for stable at least.

    I would probs suggest trying Abraxane first if this is a decision you need to make.

    All the best, Julie

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Julie thank you so much for contributing info to my post I really appreciate it. See we never know how side effects can be so different for each person I am hearing most people tolerate Halaven better ..go figure. Lol...i am hoping my MO calls me tomorrow to discuss. Btw did you get neulasta to help with the white blood cell count?? I know my MO already said she is going to continue giving me that. I take a reduced dose of 3mg and my white blood cell/neutrophils have been great while on doxil with that. EDIT: Julie good luck on your scans!!! I just prayed for you!!! Sorry I didn't add that in my post earlier...I have been having to use my phone to access BCO and its been horrible and I don't have my glasses.

  • Bliss58
    Bliss58 Member Posts: 938
    edited July 2020

    Julie, fingers crossed for you, too, for stable scan, but doubly crossing toes for regression!

  • arolsson
    arolsson Member Posts: 94
    edited July 2020

    LFF- do keep us posted. I find that with anemia, anything that doesnt require daily transfusions tends to get pooh poohed by MOs. Almost wish they would experience fatigue for one day to know that it affects every aspect of your life, not least your ability to navigate health care systems...

    On this end...roller coaster ride hopefully smoothing out.

    Early June: scans after Doxil show fast tumor growth, one large (11 cm) met and another smaller in the other lobe. MO says we are out of options. I can continue the Doxil which might have some braking effect and if I choose no treatment, well the end will come fast.

    BUT! Tenacious patient has listened to the advice of her MBC sisters and won't accept this answer. The foundation one test I paid for privately is due in any day, and I am pushing hard for MO to talk to IR about Y90 . MO seems receptive.

    a month later-guess what! F1 shows a hereditary mutuation called PALB2 which is closely related to the BRCAs. Makes me a candidate for the PARP inhibitors. Started on Lymparza (Olaparib). Also MO has now FINALLY talked to the radiologist who has looked at my CTs and finds me a candidate for Y90. Starting this fall when the team is all back from vacation.

    These two options, new hairy side effects notwithstanding, seem like a better option than continuing on useless chemo or just waiting to die. And I HAVE ALL OF YOU TO THANK!!!! So go do something nice for yourself today.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2020

    arolsson

    This is fantastic news. Prayers that your new plans work! Keep us posted. This sight has been so helpful to me too!

    Dee

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Arollson...Thats amazing. I am so happy for you!!!

  • JFL
    JFL Member Posts: 1,373
    edited July 2020

    Alabama Dee, Halaven is an anti-microtubule (like the taxanes) while Xeloda is an anti-metabolite. Regardless, failing one drug in a certain class doesn't mean that another drug in that class won't work. There is not necessarily cross-resistance. I have taken several anti-microtubules and several anti-metabolites.

    Nicole, I have always heard Halaven to be very tolerable as well and I found that myself. I agree, everyone reacts differently. If you do end up doing Halaven, the drug manufacturer will pay the patient's copay if you sign up for their program. No requirements except that you have insurance. I haven't had neulasta on any of my treatments. However, I know others do get it.

    Arolsson, great news about the F1 results and opportunity to do a parp inhibitor! Also great news you are a candidate for Y90! Praying for more good news for you.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited July 2020

    Arolsson- yes sister!!!! Praying for you that these new treatments are effective! Keep the faith! Advocate for yourself!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Thanks JFL! :):)

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2020

    thanks JFL for the insight

    Dee

  • jgbartlett
    jgbartlett Member Posts: 30
    edited July 2020

    Nicole I haven't needed neulasta shots to date. My wbc will be borderline week 2, but the break week brings me back up

  • anotherone
    anotherone Member Posts: 555
    edited July 2020

    Glad to find out that you managed it , arolsson

    Whatever lays ahead you have piece that you have not given up and managed to do all you could.

    The merit is yours - this site is just an instrument you used.

    Wishing you successful treatment and feelikg good

  • Bliss58
    Bliss58 Member Posts: 938
    edited July 2020

    arolosson, that is just awesome news! Way to go advocating for yourself. Bless those giving us all such great information here, but you did the work with that information. Sounds like good plans are coming together for you and I wish you the greatest success!

  • bsandra
    bsandra Member Posts: 1,028
    edited July 2020

    Dear Arolsson, huuuge congratulations. You are an example of self-advocacy. I've learned so much from all of you, and if not these groups, we would not be where we are today...

    Nicole is right, we are not medical doctors but I believe all "applied sciences" (well, medicine is a separate field but there's a lot of "applied sciences" in it) should function according to same principles, i.e. "start solving a problem with the best solution you have straight from the beginning, and you'll most probably end up with best results". So simple... yet nothing like this happens in oncology, especially for metastatic disease - first line treatments are always least effective for that time of being, adding up better treatments as we fail older ones. This is absolutely wrong. Clinical trials like CLEOPATRA and DESTINY (HER2+ disease) were pre-destined to bring "amazing" results because they used most effective known combinations to that day. Maybe these results were "fantastic" for medical community but they were simply "very likely" and "expected" for an applied science researcher or an engineer. Most of us know that ORR at DESTINY for MBC was >65%, pCR was 4%... and these were patients after median 6-7 (SEVEN!!!) lines of prior-treatment. We can only imagine what ORR and pCR rates would be if Enhertu (DS8201) would be used for first line of MBC treatment? This is how we should move towards the MBC cure, and not like we do today. They now talk that a clinical trial is needed for Enhertu and early-stagers, so that they would produce more cures. So if they see a probability of stage III cured with Enhertu, why this cannot be stage IV too? It is a very simple and logical deduction. Paradigm is shifting (for example, early stagers already get T-DM1 for residual Her2+ disease) but too slowly...

    My point from discussion with Nicole is that MBC patients should get most effective treatments earlier, which is not the way it is today. Sometimes I think that medical field and pharma are "afraid" to cure metastatic disease because "then what to do next"?

    Saulius

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2020

    aroission. I am so happy to read that you are a candidate for y90. I hope and pray it will help you as much as it has helped me. So glad that F1 report has given you usable information .

    I'm still responding to Faslodex. I do have an MRI of my liver scheduled for Friday. It's just to get a clearer picture post y90. The PET showed no uptake in liver but the radiologist suggested MRI. I'm hoping the result doesn't show anything confusing. I know dead and dying mets can look confusing on scans. I'll make sure that my IR gets a copy of the CD so he can answer any questions that come up.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2020

    Hi ladies.... Spoke to MO today. First thank you JFL and all those who have given me their advice and opinions I am truly grateful that you have helped my husband and I . Here is the news.

    1. She said that she wasn't suggesting Halaven bc it's "easier" or bc its "what I wanted"...she suggested it because there was a couple of small studies done (one at Northwestern (if I am remembering correctly) that showed that Halaven was slightly more effective with tumors in organs ie: lungs, liver, than Abraxane. She did say that, of course that does not mean that its guaranteed that I will have success on it. Either way I will probably eventually wind up doing both of these chemos (not at the same time)...but yea. She also said she has patients right now that have started with Abraxane and then progressed and went to Halaven and got 8 months a year and vice versa. She also said if I get stable or NED we can revisit endocrine therapy and that she is actually doing that right now with another patient. She mentioned this because I had asked about going back to that with Verenzio/Faslodex...etc. So I am relieved to know that we can re-visit that as well as trials.

    2. Reference to using something like docetaxel instead of Abraxane she said there have been studies that show that Abraxane can produce better results in getting one NEAD or Stable than Docetaxel with much less side effects being less harder on ones body. That does not mean that we would never try it...we may have to at some point...but if something is shown to be just as good and less harder on my body why wouldn't I just stick with that?

    3. She did say she agreed with my decision to NOT do the biopsy right now...she said that she was pretty positive that if they did take it from the old tumor that Tempus (which actually provides you with the most recent trials that you match too) wouldn't have had much to offer. So she agreed that we did the right thing in holding off on that.

    Last but certainly not least... When I asked which out of the 2 Abraxane and Halaven SHE WOULD CHOOSE...she re-iterated again Halaven...and added that she wanted me to know that as much as she always wants our (my husband and I) thoughts on treatments she will always make it known to us what she wants and will ultimately not do something if she thought it could make things worse for me.

    So that's it...Halaven it is, first infusion July 30th. For those that pray...Please pray for me..that it works and for more than 3 months.

    Love you all .

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2020

    Nicole - lifting up prayers that Halaven works! Glad you have peace about your next step.


    At the end of our 30 minute phone call to discuss potential trials and next line therapy, I found out that my awesome MO at MDACC will be going on Maternity leave October - January. I will be assigned to a colleague while she is out. If my current line keeps working or I choose standard of care next line then I get to return to her. But if I progress and choose a clinical trial then I will have to change to a new MO in the breast clinic at the main campus because My MO will be changing to general oncology and staying at the satellite campus. 😔

    Another crazy change in these crazy times. Prayers that my current therapy works for a loooooong time. Also that I get someone just as good who will really talk to me and listen to me.

    Dee

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