How are people with liver mets doing?
Comments
-
Guys,Nicole,Bev,Sadies,everyone,thank you. What an inspiration you all are!
Nicole,yay for the successful port. As always - one step at a time. Feels so good to see you smyile. Smiles back!:)
BAP - how are you? Please,we want to hear from you once in a while. We care, we really do:/
Saulius
0 -
Hi I’m 10 days out from Y90 in my right side. Other than some nausea if I don’t eat it’s been a piece of cake.
That being said I have no motivation. I ran a couple errands this am and had to return home. My onc wants me to have another cycle of carboplatin starting Friday. Am I going to see a big decrease in fatigue in the next four days?
I’m anticipating the left side completed in January. I see my MO and scheduled chemo before I meet with my RO. My last infusion was 11/12. I know I shouldn’t delay it anymore than I have too.
I will say I’ve had pain from hip to knee but that started with the carbo. Tramadol is what works.
I will say that I’ve had hip to knee pain and only tramadol works. It start with carbo.
0 -
Zills,
Looking through your history I see that you, like me, have been on a lot of treatments. I'm amazed that Y90 has been easy for you. I haven't even asked my MO about it because the one person I knew who had it said it was the most painful thing she's ever done. Just goes to show how different we all are. We shouldn't be scared off of doing something because one person we knew had a bad experience. Perhaps they have improved the procedure too. She had hers in early 2017.
Hugs, Susan
0 -
Yes Susan we are all different. I put an ice pack on the incision the night of and maybe the next day. No pain killers. Assuming the results are good I highly recommend it. There’s even discussion about moving up the timeline for the left so I can go back to chemo.
I also did Jin Shin Jytsu on the incision and the liver each day.
If you decide for it let me know.
0 -
Hi Salius
Thanks for checking in. Friday was my birthday
The big 34 my husband whisked me away for an overnight date and a hockey game. It was nice to have some normalcy for once. I tend to be home a lot on my recliner so getting all fancied up was nice I came home to my whole house being decorated for Christmas. My sister in law and some friends took care of it while we were away. It's truly magical. They know how much I love Christmas. It was quite bittersweet.
So I'm at the point in my off week where I got peritonitis the last time but So far so good. I've been really sweating it. I do not want it again.
Tmr I have my bloodwork and will discuss cycle three. If my counts are really low but still acceptable, I might ask to restart next week vs this Friday so I don't run into problems during Christmas. So we will see. I have been stressed about counts and then tolerating the ibrance. So I'm going to ask her about potential alternatives for IF we need to move on. My feeling is she is still thinking ibrance is the last drug she will allow me to take so I want to feel her out and make sure I have options no matter what. And if she has no options , look into another opinion if needed. I know I'm a bunch of steps ahead but it's something I'd like to have answered . I don't like feeling the pressure of not knowing what's coming next or feeling like I need this drug to work bc otherwise I'm done. . It's weird.
I'm a tad tired today but doing okay
My son has all Christmas theme days at school this week. Today was grinch day and he had to dress all green. It is super sweet. Here he is with a Christmas tree hat his nana made him :
0 -
So, I’m moving to Fulvestrant next week and Verzenio in the near future. A biopsy (and Foundation One testing) is being set up for after the first of the year, delayed a bit because DH and I will be away just before Christmas and until just after New Year’s. MO cautioned that the plan could change if the biopsy reveals big changes, but she doesn’t expect that. Thanks for the support from everyone. I’m feeling better today with having a plan
0 -
hi everyone, I don’t write on boards much but thought I:d ask on here. I’m not sure. What all is on my profile I have several Mets in my liver dx 3/21 and had taxol, Perjeta and Herceptin. Ct showed some reduction and now only getting Herceptin and pill of letrozol. I want to know from others if anyone else just has Mets in liver only or did all have more spread and time till it did? I am a glass half empty and just waiting to see where it goes next. I’m 76 and need surgery on a large hernia but hesitating. Thanks ladies. My best wishes to all.
Bev
0 -
Hi ladies..
B-A-P....why would Ibrance be your last?? What about chemo? There are so many and many that are easy....or what about Xeloda?
Susan...my first Y90 was horrible bc my tumors were right NEXT to the colon wall and because I am so thin the radiation went through liver to colon..I was hospitalized 2 times , 5 days each time for stomach and liver pain...BUT it bought me 6 months on NO treatment and they are STILL DEAD....and my 2nd Y90 not near colon was a piece of cake...so my advice is ...if a person is very thin and the tumors are near colon...be prepared...but if they are not near colon you are good-to-go
0 -
hi Nicole,
When I was hospitalized for five weeks and had the varicies , my liver was also failing. It’s not currently anymore but my MO said chemo would likely kill me faster. Perhaps maybe now that the situation is different , she may try it but she seemed to be pretty much on the no chemo train. Like last cycle of ibrance I was on 100, got severely neutropenic and got peritonitis . So we switched to 75mg. She was like “we can lower the dose or do nothing but I have a feeling you don’t want to do nothing” so the way she worded it made it sound like this is the only option.
0 -
B-A-P,
What about Trodelvy? It has worked for everyone I know who tried it and it's very easy to tolerate. You may have to take some growth factor shots to help with Neutrophils but other than that, usually no serious side effects.
Hugs, Susan
0 -
Trodelvy was only recently approved in Canada and the approval is only for triple neg. I think other access would have to be through a trial
0 -
BAP if your liver numbers are all in range I bet your liver could tolerate a chemo...like maybe Halaven...
Susan..I do know a lot of ppl on FB that are failing Trodelevy (all Triple neg and stage 3 and 4) but there are many doing well too. some that it worked everywhere but then they got new brain mets.
0 -
Hi Susan - I’m in Canada and like moth said , only approved for triple neg
Nicole , yes I will for sure be talking to her about possible next options if needed just to get a feel of where she stands. But there’s one thing I know, is that I won’t accept not doing anything especially if my numbers are good.0 -
Ohionana - I am de novo liver mets - no other mets. I reached NED after 7 1/2 mos on Verzenio and anastrozole. I've been on it about 1 1/2 years now. I'm hoping for a nice long run on Verzenio.
0 -
B-A-P,
Sorry to hear that you can't access Trodelvy. In the U.S. as well, it is only approved for TNBC but once a drug is approved, other oncotypes can access the drug off-label. Same is true for Enhertu. It's only approved for HER2+ disease but it has worked for TNBC and ER+/HER2- and HER2-low patients. Maybe you can ask your MO if the same is true in Canada.
I understand your fear of a repeat peritonitis episode. Could you try some of the lighter chemos? Eribulin is generally well tolerated and Epirubicin was described to me as "like Adriamycin lite". Xeloda, except for the hand and foot syndrome, is generally well tolerated. Do you have a PI3KCA mutation?
Hugs, Susan
0 -
I have done epirubicin with FEC the first time around. I don’t know if they’d give it again but they might. I have thought of xeloda as well. I will be sure to ask
As for the mutation I have no idea. I know I bc an do the foundation one and tempus but they are quite expensive and not routinely done here. I know I am BRCA2 positive and I mentioned parp inhibitors and they said there’s no access. While Canada has great healthcare , we are quite behind on drug approvals *sigh* I’m due for My pet scan mid January so we will see if I’m still in ibrance then and if it’s helping. I tend to respond well to treatment . I’m hoping the ascites will dry up eventually because that’s been a real hurdle for me.
0 -
B-A-P, totally get it. I had an appointment with the Pain and Symptom Management Clinic at BC Cancer yesterday and mentioned how, sometimes, I feel as a Canadian I have my nose pressed against the glass watching our American (and in some cases European) friends gain access to drugs which could be pivotal for us. It’s so frustrating but, at the same time, I understand the need for strong evidence. As to FEC, it will depend on the dose but I have also reached my lifetime limit of anthracyclines as I was on CEF for stage 2a in 2001. It seems a million years ago but I take it the potential for heart issues is very real even after all this time. Mind you, 50sgirl was able to access the red devil despite this and it seems to have been effective. Risk aversion is an issue north of the border.
One enlightening thingthat came out of my appointment yesterday was that apparently my experience over the last few months with my MO on sabbatical is not the norm. At the end, when the nurse was checking to see if someone was lined up to look at my scan set for Friday (answer no), she indicated it was unprecedented. So, apparently I have fallen down a precipice, not just fallen through the cracks. OMG. But only 49 days until my MO is back and he is never, ever, allowed to do this again. Hope he comes back rested!
0 -
BAP, what helped to clear the varices and liver issues?
0 -
HI SANDI!!!! how are you?
BAP what is varices?? Do you mean Acites?
0 -
Sandi,
Unfortunately, I ended up with a major major internal bleed and the varicies ruptured. I ended up in the icu. I happened to be in the hospital when it happened otherwise I would have died due to extremely low platelets. The Dr on call was not going to send me to the icu and spoke to my husband saying it was very slim I'd make it through but he said “she's there in the room conscious and with her faculties , you'll have to speak to her" I told the Dr if it wasn't a zero percent chance, then send me down. And thank goodness I did bc I came through. The next day the Gi team banded them. I am now on nadalol to keep pressure in the liver low (but I have low BP already so I take a very small dose), I take a ppi and prophylactic norfloxacin . I wouldn’t say my liver issues are clear considering I still have ascites but I have an indwelling drain to tap my own fluid since I was going to get paracentesis twice a week :
Nicole, varicies are like varicose veins but they can form in the esophagus And stomach (among other places) due to portal/hepatic hypertension . Which is also the reason I also have ascites. Nothing flows well in the liver. There are blockages due to the tumours and cirrhosis. It is truly a pain bc this is something else I have to watch for bc the bleeds can be fatal. As far as I know I don't have other ones at the moment.
Sadie , you're right. It is very frustrating to see that others have access to drugs that we don't. So many here are so helpful in their suggestions, but more often than not , it's not an option for us due to access and approvals by health Canada. I can't wait for your Mo to get back too. Mine went on sabbatical once but I was lucky to have a good replacement . But in saying that , I had to literally beg to see her sooner after my first recurrence.
0 -
OhioNana, although I had both liver and bone Mets at dx, I started on the same treatment as you, taxol ,herceptin, perjeta. Now I've dropped to herceptin and perjeta and added zometa for my bones. For me, scans currently don't show any activity from the cancer. I don't know if there's any rhyme or reason as to where it's likely to metastacize next. Talk to your doctor of course, but if you're not currently on chemo and feel good, it might be a good time to take care of the hernia.
0 -
B-A-P happy belated birthday. Love the phot
0 -
sorry everyone. I’m a bit behind on the boards. I spent the last week in bed , whic was confirmed by trip to ER with imaging, is no due to bone Mets or fracture due to cancer. I am up today to take myself to treatment. New pain meds and muscle relaxers plus steroids do enough so I can get up and function slightly. I’m in for PTand lots of rest. Also got through my two diagnosis anniversaries ( 11 and 9 years out). So I’m thankful.
Thinking of all of yo
0 -
also- I don’t know who asked about liver resection but I had a partial one of my left liver in 2015 I think. You can pM me and I can tell you my experience.
0 -
LFF sorry you have not been well. 11 years wow I wish HER2- and TNBC could get those numbers
. Thats wonderful for you!!!0 -
LFF,
So sorry to hear about the pain and the ER visit. I do want to hear about your liver resection years ago. Must have worked! I'm sure others would like to hear about it too.
Hugs, Susan
0 -
Dear BAP, please hold on, you are a super-girl! You know... we also don't have newest drugs. I mean, what is approved by EMA (European Medical Agency) is possible to get but then you must pay yourself. For HER2+ we only have state covered trastuzumab, pertuzumab and T-DM1 (not even lapatinib anymore), for HR+ disease - standard HR blockers, AIs, ribociclib and abemaciclib, palbociclib is going to be compensated soon, TNBC has only pembrolizumab and in limited cases atezolizumab, sacitizumab-govitecan is still far away, alpelisib is also accessible for PIK3CA mutations. I am in constant contact with Astra Zeneca for Enhertu - they promised they'll file the application for state coverage this year but it is still not out:/ Covid-19 has messed up things badly, much money is pumped into pandemics, oncology is forgotten, basically ~10 new applications for BC are pending. Dang...
Saulius
0 -
Don’t worry Salius , I’m always holding on
Bloods were good yesterday at 1.5 ANC. I did ask for a week off only so I could enjoy Christmas and not run into low counts and a possible infection again. She was happy to agree. It worked out better anyways as our next visit would have been a day before my Pet Scan vs waiting a week to start and it being booked for after the Pet. I’ll still do my fulvestrant this Friday however
She is looking for stable or better to stay on I/F and when I asked about chemo in the future she did say I was clinically better than I was in September so it’s worth a conversation though she reminded me it would still be risky. So I am happy that talks are willing to be had. She said that of course the hope is that the I/F is working and we can stay on that as long as possible. When I asked about the ascites she did say I’d likely have some form of ascites always but hopefully it will improve. She didn’t seem too confident but I know my liver is very much scarred. I just hope for some improvement for better comfort and for the sake of my clothes fitting properly. I worked so hard to get into the best shape of my life for the last threee years and ascites has ruined that so fast. I am aware it could be worse so I’ll be happy with my progress as it stands and continue to hope for more improvement and time
0 -
LFF, I’m sorry that you are not feeling well. Congratulations on your 11 year anniversary!
BAP, I’m so glad to hear that your numbers are good!
0 -
Hi all,
I'm joining you to learn more since my liver has been the biggest problem for me so far.
LFF, hope you feel better soon. Congrats on your anniversaries.
0
