How are people with liver mets doing?
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Sualius I did have radiation to the C7 and T3 but that cancer has not all been killed.... So Saulius I am still confused are you still saying that Trodelvy is a Targeted treatment?
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Nicole, I am so happy and relieved that there is no brain met. I can imagine the stress you and your family must have gone through. There is a thread on Trodelvy, but I don't think it is very active. I was on Trodelvy for less than 3 months. Unfortunately it didn't do much for my spine or liver mets. I lost what little hair I had after Doxil treatment. Other than that, the side effects were tolerable. I did not have diarrhea on this drug but had to take anti-nausea medicines. I hope this drug works for you.
Daughterof, I can understand what your mom and you are going through. As others have pointed out, it takes time to come to terms with MBC. Looking back, I think I felt almost normal when I was on Ibrance. It did keep my spine mets stable for 1.5 years. I think your mom probably needs assurance. The fact that many of us have been okay for such a long time should give her assurance that it is not the end. I was diagnosed with spine mets in 2013 (YES, almost 9 years!). Please tell your mom that there are many women living with bone mets for a long, long time.
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Nicole, Trodlevy is a targeted chemo drug. It is a conjugate of a toxic chemo molecule, attached to an antibody that targets cancer cells. By doing this, it delivers more of the drug to the targeted cancer cells that express the target for the antibody. It's not perfect, and it does still affect undesirable targets like hair follicles.
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nicole i think I wrote before my analogy that it's a drug that combines a key to unlock a cell, and a package of chemo. The key only unlocks certain lock. - TROP2. So it is targetted.
Trop2 is present in many healthy cells but there is way more of it in breast cancer cells so they suck up more of the chemo package.
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Thanks moth thanks Husband...
SK35 I am confused why you went on Trodelvy...I thought its only for TNBC??? or should I say mostly and most effective for TNBC
Moth I know you previous mentioned some stuff about Trodelvy..but Saulius saying its Targeted I thought he meant JUST targeted...like not chemo
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NicoleRod, you are right. Trodelvy is for TNBC.
I have been diagnosed as TNBC in Oct 2020, after they did a liver biopsy. Till then, I was treated as if I was ER+/PR+ since that was my original diagnosis. After Doxil, I started on Trodelvy. Now I am on immunotherapy/Chemo combo, which is also for TNBC.
Since one year, none of the treatments have really worked to halt the progression of the mets in liver and spine. I am reaching the end of available treatment regimens. Immunotherapy + carbo is my only hope. I will find out in about a month if this treatment is working.
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Dear Nicole, the others already answered the "targeted" question:) And yes, many TNBCs express TROP2. Trodelvy also has a ,,bystander effect" (can not only kill the cell that expresses TROP2 but also cells nearby) - a new "feature" from which you can benefit a lot if TROP2 is not homogeneous among cells. Saulius
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Thanks you Saulius.
S3K5....are you or your oncologist looking into clinical trials? I just messaged one in MN where they inject measles into the tumors to create an immune response.... but since you are now TNBC you should be eligible for some trials? I wonder why the Trodelvy didnt work being you are TN...
. I am praying it works for me for at least more than 3 months. I haven't had anything except Y90 work. Are you taking anything else? I am now taking the Statin.., Ivermectin (3 days on 4 off) and I am even using Frankensense essential oil 4 times a day topically but I am going to start ingesting just 1 drop a day on the 4 days off of ivermectin... I don't think it will cure my cancer but I want to do as much as my liver can handle to try and keep the cancer from growing..im thinking if I have a lot I am attacking it with maybe it will give up..lol0 -
Hello Ladies, I have beenreading a lot of the boards for several months but rarely post. Not sure all my dx and med info is correct or up to date.. I am probably oldest and most tech challenged. For the past two days I have been having sharp pains in liver area. They don't last long and no regular pattern. Anyone else get sharp pain like that. If it continues tomorrow I will have to call my mo.
Thanks. Bev
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Hi OhioNana,
I sometimes get pain in my liver and I can't sleep on my right side because it's tender. Doesn't hurt to call your MO. When was your last scan?
Hugs, Susan
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Susan, thanks for reply. I’m usually a stomach sleeper but not tonight. I’m in the recliner. Had first PET last week and only liver lite up. Dr said you get better measurements on ct. last one of those showed some shrinkage. Maybe the 2oz wine yesterday did it. Dr said I can still have some wine. Way past my normal bedtime so I’ll try again. Have a good night. Be
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Im getting a port put in on Friday. trodelvy infusion! I am so worried. Also I was suppose to get a pediatric port because I requested that based on feedback from many other very petite woman. Also is it best to get it on the right side if I sleep on my left?? I am a strickly left side sleeper... Any info ya'll can give me I would appreciate... I am scared. Thanks.
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Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC
To register, go HERE.
After registering, you will receive a confirmation email containing information about joining the meeting.
Hope to see you there.
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nicole I had a bit of discomfort with sleeping on the port side for about 2 weeks...not even really discomfort, I just sort of noticed it and had to readjust myself. My IR said he prefers to put it in the right side ... I think it was default.
Try to relax about it - it was not bad at all
Sending hugs
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Don't get on the site much but am a little jittery this time. PET scan showed activity in existing liver mets. Medical team will meet to discuss treatment which may be ablation or surgery to remove segment of liver. Three lesions are very close together so not sure what they will decide. Have not found anything explaining how they decide. Sounds really icky either way? Any comments will be greatly appreciated.
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thank you Moth!!!
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Nicole, I am on Keytruda. MO stopped Carbo due to low blood counts. I'll be starting anti-androgen tablets soon after my radiation treatments.
My next scan is in February 2022. If there is no progession, I'll continue on anti androgen.
My body needs a break from all these toxic chemo.
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Just wondering if there’s a typical next step after Ibrance/Letrozole when liver mets progress? I know each case is different but maybe there are some common experiences? My report came in and said there are at least 5 new mets with the largest measuring 1.8 and 1.7 cm. I see my MO next week and will find out what happens next. Thanks for any help. Not feeling great today, as you can all probably understand.
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Rosie24, my wife's onc said the next step after failing on a cdk4/6 inhibitor, was fulvestrant. My wife experienced increased tumor markers after several years on ibrance / letrozole, and she switched to abemaciclib and and different aromatase inhibitor, and it reversed the climbing tumor markers and seems to be holding things steady. But, we never got imaging that confirmed progression before she made the switch. That might be too speculative of a switch to make where there is imaging of progression.
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S3K5,
What is the anti-androgen medication you will be on? I thought they found that boosting your androgen decreased your estrogen. For example, Enobosarm (Ostarine), sometimes used by body builders, is in clinical trials right now for ER+ patients.
- Susan
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Question... how hard line are your oncologists in terms of the ANC? My neutrophils were 0.9 today which, according to the protocol, should mean a delay of a week for Vinorelbine. Normally I would be concerned but, in this case, I'm relieved. I'm in a bit of a quandary regarding how to manage my treatment at the moment as I seem to be falling through the cracks.
As I think I mentioned, my regular oncologist (who is an absolute gem) is on sabbatical until February. I'm happy that he is getting a break quite frankly but it's been so stressful in the interim. I was assigned to another MO who started badly... made me wait 2 1/2 weeks after my September CT scan to talk to me, despite liver progression (that I was certain I had based on symptoms). That was the last time I talked to him. I've spoken to Cancer Agency GP's after each cycle of chemo (that's another thing which is not kosher... normally you see GP or NP for two cycles and then the MO), reiterating over and over that I have worsening pain and continued discomfort in my right quadrant, indicative of progressing liver mets. All to say, I am really not confident that this chemo is working.
I've now completed three cycles but apparently the replacement MO did not order the CT scan he mentioned when we spoke in September. The GP I spoke to before cycle three reached out to him but the delay means that my CT scan is now scheduled for December 17th. Based on the current chemo schedule I was set to start cycle four tomorrow with the second infusion next Friday, same day as CT scan. The protocol clearly states that there should be an assessment after the third cycle and, if there is no response, discontinue. WTH? While I wasn't thrilled, I decided I could live with cycle four but then yesterday, another Agency GP spoke to me pre the next chemo cycle and made a comment about seeing me before cycle five. Say what? When I mentioned that I expected I would talk to the MO she said "Why? Do you have a question?" OMG!!!
So, trying to figure out how best to handle this. I figured I could just proceed and then make noise after the scan but then realized that they will likely hand me my cycle five appointments and requisitions when I go in for chemo, at which point I may lose it. (It's tricky as, while I have some significant concerns, I don't know for sure that I have progression until I see the CT scan so don't want to let myself get crazy. But another wrinkle is Christmas when staffing levels, including oncologists, are very low. Not sure how easy it will be to get the results of my CT scan.)
So... really thought today... bless that low ANC! Maybe that will buy me a week to get things sorted!!! But now I'm wondering if they will push the boundaries on the ANC as well... Lord, I can't wait for February!
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Rosie- I posted a response to you on Mel's Thread.
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Husband, That’s interesting how your wife changed treatments based on tumor markers, for a good result on the markers. I’ve only had one set of markers run, that came in quite low, so my MO stopped running them. I wonder how they’d be now. Yes, I’m thinking I’ll be changed based on the imaging and to one of the meds or combos in line after I/L. I’m going to read up on Fulvestrant just in case it’s in my future.
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Sadiesservant, in all my time on BCCA chemos, the only fiddling around that my MO would do was to prescribe grastofil one day & retest again just before the infusion, at which point my neutrophils would be sky high & we'd proceed. I think I'd expect them to hold the chemo tomorrow. If your appt is in the afternoon, I'd call the chemo room or your MOs secretary before driving out.
I've only seen the agency GP once but I hadn't heard anything about the number of times they can see you. I was told they can see us so long as we're staying on the same therapy. It's not in their scope to change our treatments, but they can continue already prescribed regular treatments (I don't know if it it's in the scope to override the protocol for WBCs or if they need an MO..)
hugs
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Dear all, some news from our front: we are just back from Latvia where we did mapping, fiducial marker insertion and hinge (what's it called - to hold her shoulders in place during the procedure?) for these 3 seen lymph nodes (up to 7 mm now but SUVmax <1.7 for one lymph node and <1 for two others). On Sunday I am driving Sandra back for 5 day procedure, where they will zap them with Cyberknife for good! Don't want to give any chances to this disease, as nothing is seen elsewhere and Sandra feels absolutely healthy. I think it will also be good for her to rest from us all in another country:) She'll work remotely though but still... change of environment. Hugs to everyone,
Saulius
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Saulius,
Thank you for the update. I am so happy that you are having this procedure done and being aggressive with cancer.
I hope the procedure goes well and that Sandra comes back from Latvia and heals quickly.
Thinking good thoughts for you both.
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Saulius I just prayed for your wife! Praying all will go smooth.
So I got my port this morning so far so good!
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Sadiesservant,
I only ever see the Agency GP unless we need to discuss a treatment change. I do not live in a large centre so my MO is a 6 hour drive away. My local hospital has a BCCA satellite office staffed by GPs. I know that the GP follows the MO’s orders and it seems they are unable to go outside of those orders without receiving approval from the MO. I’m in the process of changing treatments and have spoken to the MO multiple times in the last couple months about this. Prior to this, I had only spoken to the MO once and that was a year ago when I was first diagnosed. I fully expect that I won’t talk to the MO again until we have proof that the new treatment is not/no longer working.
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Wow ilowen, I would be super uncomfortable with that approach but then, I do understand the challenges of being in a more rural area.
I have been so spoiled having an MO who is very accessible and responsive. We generally have appointments every three months but often communicate in between if something crops up (which has happened numerous times). This last four months has been a shock to the system and very stressful. I've actually been considering what I will do if my MO ever decides to leave and believe the best thing would be to transfer to Vancouver. It's so important to have a good MO that's paying attention and actively working with you to keep us going. I’m not sure I would find that here based on my latest experience.
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Thanks Moth. I’m not far from the Agency but will give them a call this morning. I want to make sure I am in control of this situation, or, at least, as in control as possible.
Great news about Sandra’s treatment Saulius. I’m sure it will be a relief to get rid of those problematic nodes!
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