How are people with liver mets doing?
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S3K5 I am so sorry you have been in the hosptial and have that infection but glad they are treating it! Feel better and keep us updated as you can.
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Hi S3K5, I believe there was just a discussion on the thread “Are you on or have you been on a clinical trial” about Androgen treatments. Look for a posting from Cure-ious. There have been some good results from phase 2 trials and they are about to launch into phase 3. I’m keeping an eye out for options as well now that I appear to be endocrine resistant but options for trials in Canada are limited.
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Hi all, I've been here since last August, although haven't posted any. Quick summary for myself: Xeloda didn't work too long for me (only 5 months). Then I switched to Halaven this Feb.
My question is: Has anyone had abdominal pain (in the liver area), even though your blood tests all within the range (includ. ALT/AST) and CT shows tumor not progressing? If so, does the pain go away after awhile?
I have had a huge pain in the around-liver area recently. I had to go to ER yesterday as it reached an intolerable level, even with pain killers. But the ER diagnosis was so strange. Except for the liver tumor, CT shows other organ parts are fine (kidney, gallbladder, etc.). My liver enzymes are in the lowest ever. The ER physician said he couldn't find any problem except for my liver mass from the image report (but guess what, compared to my CT 3 months ago, the tumor size is about the same). I only finished the 1st cycle of Halaven. Is this because Halaven doesn't work and the pain is the outcome of tumor cells becoming aggressive...?
My blood test and tumor marker are totally fine, except for WBC, which is currently knocked down to very low (2.3) due to Halaven. I will see my onc MO this Wednesday, but thought some of you may have been in my situation before.
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Dear Nicole, I am happy our and your prayers were answered. You are on the path to recovery. It is also good you seek help from therapist. Hugs!
Dear Arolsson, we missed you. As you for sure know, Enhertu has been approved in Europe. Tukysa too. There should be options. And, if I remember correctly, your last scan results were very encouraging. Do you have someone to advocate for you (regarding treatments, in discussions with doctors), to help (at home)? You can write here even with these keys missing on your keyboard - we'll understand everything. You matter, the world needs you, we need you, your daughters need you.
Saulius
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sac321 -- I don't post much on this thread either, but my wife, Polly, is going through the exact same thing you are. Up until 2 1/2 weeks ago when had a liver biopsy and started Lynparza on a clinical trial for her type of MBC, she's basically been pain-free. Since then though, she's had various pains. It started in her right neck/throat moved to her shoulders, but for the past week or so it has settled in her right side between her rib and her waist. This is debilitating pain especially when she moves. She describes it as a twisting nerve pain. She has a particularly hard time when she lies down at night attempting to sleep.
She had a scan on Friday, and although she has some fluid on the lung, like you, they couldn't find anything in and around the right-side pain that's actually causing her pain. Her tumors are basically the same size as the previous scan, and her blood work doesn't show anything out of whack. They also tested her for various viruses including COVID, but all were negative. Hopefully, she's going to have a follow-up call with her MO today to get something stronger for the pain, but it's frustrating not knowing what's causing this. Best of luck getting this figured out.
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sac321, I have occasional pain in the liver area; right side under rib and extending to the back. It feels like a tight rubber band when it occurs. I have never had liver pain that sent me to the ER.
When you meet with your MO, could the two of you possibly discuss other scan modalities to see what this liver tumor is actually doing, like a MRI and PETCT? Also, did you have bone scan to look at rib lesions? I say this because you had ILC lesions in 2018 and I understand this can be tricky to find. Also, was the August 2020 liver lesion biopsied to get genomics to provide you with more info on this lesion?
If this tumor is still active from August and it is the only lesion visible in your body, maybe discuss targeted radiation tx to specific lesion.
The rad onc told me that as liver tumors shrink, the surrounding healthy liver tissue moves into that space and causes some irregularity to the shape of liver. Maybe your pain is coming from the outer nerves of liver as your liver lesion heals? Ask your MO about this or set up an appt to see a specialist in the radiology field to discuss latest scan. I meet with the rad onc to ask these questions.
I am sorry that you have this horrible pain, it has to be frightening to you. Keep us posted, even if it is just to talk.
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Hi all.
Thanks for being in my pocket on Friday night for the MRI. I hate them but they are necessary. I don't have the MRI report yet from Friday, but my MO called me this morning. As I feared, the MRI picked up something the CT scan missed. Sigh. In any case, the MRI confirmed the new finding by CT, a 1.9 cm tumor in right lobe (Seg 8?) and also another tumor about 1 cm in right lobe (Seg 5). Both popped up within 3 month window. MRI also confirmed that the 8 other original tumors are 1 cm or less and quiet, under control. No new activity in them. In the MRI report, they are referred to as "treated" metastases. So, my MO still wants to deal with these new tumors locally and keep me on verzenio as she believes it still has good disease control. Confuses me, because why then do I have two new tumors? Maybe these two have mutations. Anyway, if we can blast these two into oblivion I guess I am game to stay on verzenio for longer or as long as possible. Scans have been sent to IR and now waiting on review and a consult to see what he recommends. Both are in right lobe, so not sure if ablation or Y90. Want to get a biopsy and send to Foundation 1 or other to have NGS. Anyone recommending another company over Foundation 1? This is pretty disappointing, but I am finding some comfort knowing that the 8 other tumors are senescent and there is no new additional activity in my bone aside from the one treated met.
Interestingly, my TMs (CEA, CA15-3, and CA27.29) have been increasing slowly but steadily for the past several months. They are all at the low end of high range, but they have been increasing. When I was "stable", I really only followed CA27.29 and that remained truly stable as well during that time of stability. So, even though small increases, there was a trend, and low and behold, 2 new tumors in my liver. Looks like my TMs might be consistent with stability or new tumor growth.
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HopeandGratitude,
So sorry to hear that progression in your liver was confirmed, but also glad that you and your MO are on it. You seem perplexed about the 3 month thing, so let me offer another perspective.
I have been having MRIs of my liver ever since my first ablation in July 2019. Last September, a new lesion showed up (I think it was about 1.3 cm). My IR actually said -- well, it may have been there since we first looked at all of this and just hiding. He didn't elaborate, but I have two theories on that: 1) it had been there all along and just decided to start growing so it was then showing on the imaging: or 2) it really had been missed because of the way that they do the "cuts" on the MRI picture. I really don't know which, but either might be an explanation for your new lesions as well.
I have had both Tempus and Foundation One tissue testing, and F1 blood testing. I much preferred the report from F1 for the tissue sample as compared to Tempus. Hope others weight in.
Keep us posted as to what's next. Good luck.
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HopeandGratitude- I am sorry to hear of your progression. Crazy that the 8 smaller lesions are stable, while 2 new ones came on. Crazy how this cancer works. Hoping they can zap the 2 new ones though and you can stay on Verzenio longer. Keep us informed.
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Hope Gratitude,
I am similar as you; liver lesion growing within 3 months, now 2cm+. I will continue Xeloda as it killed the others. SBRT for the mutated one. Could not obtain tissue bx due to its location. Blood biopsies sent to F1 and Tempus.
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Hi Sandi. Thank you for joining in. It's strange right? My MO is so sure she wants me to stay on Verzenio even with these two new tumors. I guess she and I would rather deal with 2 and keep the other 8 and bones quiet. It just defies my simple understanding of what's going on. But yes, looks like we are in a similar situation. When I knew there was 1, I was ok, but now that there are 2, I grow more concerned. But worrying does nothing to help and I try not to go off on the "what ifs" and "why's" and will just have to trust and deal with it step by step and day by day. I am interested to hear with that IR will say, especially since there are two. Thinking he may trend to Y90 since they are both in same lobe. How did you decide on SBRT vs ablation? Was it location or preferred for another reason?
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Sac I believe you are feeling pain in the liver from die off of the tumors. I had success on Halaven and had pain from die off. Halaven works GREAT on liver tumors and was, for me, the easiest drug I have ever done yet and I have had 4 lines of treatment.
Hope. I am saddened that you have new tumors, correct me if I am wrong...but is segment 8 or 5 by the colon wall? Please check that out carefully before you pick the local treatment. As you know mine was by the colon wall and I had the Y90 go right into the colon and you know the issues I have had since then...NOW to be fair to Y90...if you are not SKINNY and have like zero body fat like me...then complications to the colon/stomach will probably not be an issue for you....but if you are like me...then I caution you to at the least discuss that with your IR. Thankfully your tumors in there are small that is good.
It so strange how tumors can grow in one area and the others not grow or vice versa with a treatment. Ya know I met someone the other day in the FB group that literally has 3 different type of Breast Cancers all at the same time. Some tumors are ER+ HER- some are TNBC and some are triple positive...its CRAZY!!!!
Well all...I will start Verzenio and Faslodex on Wed. it gets delivered tomorrow I would welcome and be blessed by all your prayers that I get more than 4 months Ill take STABLE I am not even being greedy and saying NEAD...
Hope I am praying that you continue to have peace and success with local treatment and Verzenio! ((((((((HUGE HUGS)))))))
Sandi I am so sorry about that new tumor. Where is the location that they are not able to get a sample???
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S3K5- cellulitis is tough. I have had it twice. Did they check your IGG levels? Cytoxin tanked my IGG so I am more vulnerable to infections and take IVIG. Hope your new plan goes well.
Hopeandgratitude - Your MO sounds wise for staying on Verzenio and zapping the 2 outliers. You can always change systemic later. I had Y-90 radiation beads(radioembolization) and bland embolization to the liver. It depends on the vascularity of the liver if you qualify. I also had SBRT to the lung. It was much easier than y-90. I don’t know the toxicity differences. You could consult with both an IR doctor and a radiation oncologist and see what they each say about the different procedures.
Nicole- glad you are on a better path.
It’s heartwarming to be connected here, but sometimes difficult to keep up with everyone. Just know I care that the situations are hard, but we keep each other educated and encouraged through our posts.
Update- I have a tiny spot on my skin over my port that looks infected/necrotic. Was put on an antibiotic. I see the surgeon tomorrow. I am hoping it’s nothing, but the skin appears to be adhering to the port. Uggh
Dee
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(cross-posted, sorry for those that keep seeing it!)
I saw my MO today, and she's adding to my Ibrance break (started based on liver ablation, continued for vaccine doses). I'll have almost 9 weeks off when I restart on April 15. I said I was fine with it if she was, and she said she was, and she said it twice. I'm going to start having tumor markers done so she has another way to follow me other than just scans. She said ablation changes the images so much she can't tell what's what and has to rely on the reports from the Interventional Radiologist. I was kind of surprised she even looked at the images but maybe it's common for MOs? MRI coming in May, IR requested for 3 months post ablation.
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Dee just prayed for your skin situation near the port .
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Hopeandgratitude and Nicolerod,
SBRT was chosen over MWA because of location of liver lesion; under diaphragm on top of liver. The IR could not see lesion to bx while using Ultrasound. The met was discovered active from PETCT. The IR was able to place the gold fiducial marker per memory of that PETCT. A noncontrast CT scan verified correct placement.
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thanks Sandi. Trying to come up with questions during my consultation. Not sure if just need to speak with IR or also consult with rad onc. One step at a tume
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thanks everyone for your support and experiences! I will keep you posted on outcomes of consultations and decisions. Also sending my scans to my second opinion MO in case he has any other thoughts or concerns.
Dee - hope the abx work and take care of infection so you have no issues.
Good luck Nicole with Verzenio. Feel free to keep corresponding in that thread. Saying prayers!!!
Rosie 24 - my MOs have always looked at reports and scans and reviewed with me ASAP. How did your ablation go? You seem to be recovering well. Did they treat a single tumor? Please keep us posted on how you are doing. Do you have tumors outside liver?
S3k5 - hoping they can treat the cellulitis and it resolves
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Hi Hope and Gratitude, Sorry too, to read of your new activity. I hope your team settles on a local treatment for the new ones. My ablation was for 2 lesions that were considered “residual", as I've been stable for a while. The procedure was not too bad for me but I did have general anesthesia because of the tricky location of one. You might find some helpful info in the thread about local liver treatments. Sorry but I haven't figured out how to link threads here, maybe someone will help out? Please let us know how you're doing too!
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oh Hope, sorry to hear about the two new spots. I agree, it’s odd but hopefully you can knock them out and have the meds keep your others stable. It’s never easy hearing about additional spots while on treatment. It’s always this weird limbo feeling and a lot of questions about what’s truly going on.
I barely was allowed to get my first treatment of my fourth cycle today which is unsettling. My Neutrophils were 1.4 but my MO approved going ahead which was fine with me. I’m just shocked bc my two weeks off (which if you count the few days of the 3rd treatment of the cycle would be more like 9-10 days) they didn’t rebound. If they ever tank , it’s usually by the third treatment of the cycle. For me, it’s not a good sign that I’m starting this cycle pretty low. Hoping not to have to delay treatment 2 and 3. I’d like to keep the momentum going since it’s doing a pretty good job . Stimulating shots haven’t been discussed so I was wondering if there’s anything I can do to help encourage them to increase a bit0 -
B-A-P I constantly struggle with low wbc and my experience is that diet does matter. If I make sure to have adequate calories and at least 20% of those cals from protein, as well as some good fats from nuts, that helps. I've also read vit c, b12, and b9 are important building blocks. Of course no supplements without onc apporval but it's relatively easy to find foods that give you a daily recommended supply of those.
I figure the body needs to build all these cells so we have to give it good raw materials.
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Dear BevJen, wow, your sentence about "slicing" in MRI/CT scanning opened my eyes once again - sure, slices at 10 mm can theoretically miss an 8 mm tumor. And therefore it once again confirms that interim ultrasounds are needed. Thanks, very good point!
Saulius
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moth - thanks ! I eat super healthy but I wouldn’t be surprised if I’m missing a few things. So I’m going to try and switch things up and little and see if it helps. I’m sure that having my scans on my time off didn’t help much either (stress). I was definitely surprised to find out they hadn’t recovered at all.
I’d hate to have a delay because of it. Just want to get it over with ya know ?🤞🏻🤞🏻
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Gosh, I wish I was better at remembering everything everyone is going through. Is it chemo brain or old age that makes me have to read everything three times?
Sac321. I’m on Halaven/ Eribulin also. I start my fourth cycle tomorrow. It hasn’t been too hard on me except for low magnesium. My WBC has not been affected. I still have about half of my hair so I can still make it look decent without having to wear my wig.
I did put my wig on for the first on Sunday. I don’t know why I’ve been so reluctant to try it on. Except for the fact that it’s quite a trick to get my real hair under it, even with the nylon cap. Even then, it did not feel secure and I thought it was going to pop off my head at any moment!!!! My son and grandson were here so Ty took a pic of me in it. I’ll post it. My grandson hated it. Lol I wish you could have seen his face. He’s nine. Everyone else seems to like it. Now, I just have to get brave enough to wear it somewhere. It’s so much harder and more time consuming than when I lost all my hair the other three times.
Praying for all of you.
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Looking good Grannax!
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Absolutely beautiful, Grannax!
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Love it !!!! It looks so real !!!
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Grannax, You look more beautiful than ever in your wig. You even look younger! How did you manage that?You made a good choice. I hope you are doing well.
Hugs and prayers from, Lynne
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Looks beautiful Grannax!
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