How are people with liver mets doing?
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My SBRT to the single liver lesion will be March 15, 17, 19..three days about 45 minutes each time.
I had the mapping where they gave me the marker tattoes. I also had gold fiducials placed near lesion last week. The simulation is March 1st.
I was not a candidate for Y90 at this time. The Rad Onc said that would be used if I had multiple liver lesions. I was also not a candidate for microwave ablation due to location of lesion.
I probably should cross post to the SBRT thread, so we can learn from each other.
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Thank you, Everyone, for celebrating my good scan news with me!
Sandi, for what it's worth I agree, I would totally zap that one stubborn met in whatever way the docs deemed best. It really makes sense if the systemic treatment is otherwise working. (At one point I was on that road but my bile duct issues and liver abscess raised my infection risk, so we didn't do it.)
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Nicole, reducing pain is the right direction to be going. Hang on, girl, things have to get better. Sending love and support.
Hello, Nola, and welcome. Please do not apologize for jumping in. We just need to jump in when we need to jump in. Getting a diagnosis of liver mets is a huge blow. It sends you reeling. We are here to embrace you and help hold you up during this crisis. I too was considered low risk.
Obviously I don't know your whole situation but I have to wonder if your gyn who does those D&Cs really understands tamoxifen. If the cancer is still ER+ I believe you will have two options for becoming postmenopausal: remove the ovaries or shut them down with Lupron shots. Then you can go on an aromatase inhibitor, since tamoxifen has failed.
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I can’t believe i haven’t posted in so long. I tried to read all the posts, it seems like there is a lot of news. I think I’ll have to re read.
I just had my first infusion of my third cycle of Eribulin. My labs were good so I didn’t have to have magnesium.
Last week was crazy in Texas. My house had no power for 100 hours. Fortunately, I had no damage to my pipes. I did stay with my daughter for four days.
I’m wearing a Holter Monitor for two weeks. Ugh it’s going to drive me crazy. But doc needs to catch another episode of SVT to really see what’s going on. I also have to have a nuclear stress test next week it’s the day after chemo. No rest for the weary.
Congrats, Dee. So happy for you and all who got good news.
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I had to chuckle Grannax. Once we are “in the system” we are well and truly in it! Scans if we even hiccup, interventions to deal with the treatments, and on it goes. LOL. But glad they are monitoring you closely.
My heart goes out to all of you in Texas dealing with that mess. While here on the “wet coast” we don’t see much in the way of really cold weather, we are at least set up for it when it hits. I worked in the tropics for many years and know how horrific it can be when Mother Nature throws that kind of curve ball.
Wishing you the best for the week ahead
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hey Grannax2
Glad you are ok after the Texas weather issues. It really affected MIssissippi too where some of my kids live.
The heart monitor and stress test will be good to rule out issues and address what they need to to keep you going strong!
Dee
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Grannax2, good to see you post. So sorry for the awful circumstances you're dealing with in Texas. Thank goodness for your daughter! Hugs as you go through these tests. And so it goes...
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Shetland Pony, Nicolerod, Grannax2, Left Foot Forward, JFL..always thinking of you in your struggles and successes. For those new to this thread, I read your stories and think of you daily. I might not respond, but know I am here.
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Question: Is it considered progression when a lesion does not respond to therapy, but other lesions have?
Especially when there is no change in chemo, just a targeted radiation procedure.
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I would think progression would mean a scan that measured growth of the tumor outside of the range of error. Lack of response but no growth would be stability, which is also good if the tumor isn't currently causing problems.
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SandiBeach,
I agree with Husband. If something is just sitting there and not doing anything, I'd call that stable. But who knows what goes on in the minds of our MOs???
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Nicole, Just wondering how you’re doing. Any pain relief yet? 🌺
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Hi Rosie..thanks for asking. I am still having pain. I have decided to hold off on the Alcohol Plexus Block scheduled for tomorrow I am just too leary of the possible problems with my stomach that could come (even though they didn't say that can be an issue, I am just not ready to chance it)...plus my husband has been home with me for like 8 weeks and needed to really get in to work this week. I will re-schedule for next week....(If I still need it by then) My pain when it is the highest is probably about a 5 ....that includes my stomach..if its not my stomach its the liver...and vice versa
I am suppose to start Affitor next week..I have been off all treatment now for 9 weeks......
. I am so worried about how the affinitor is going to make me feel on top of how I am already feeling....0 -
Oh Nicole, I’m sorry you’re still struggling with the pain, and then the rescheduling of the alcohol plexus block, and the unknown Affinitor. Too much for one person. Hopefully your clean liver report means the 9 weeks off will be ok. I think of you a lot and really hope you can turn the corner soon. Thanks for posting how you’re doing. Hugs to you.
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Nicole, do you have access to acupuncture? Is it something you might consider? My wife and daughter swear by it. I don't have any personal experience, but it is supposed to work for pain.
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Husband thanks for mentioning that. I did accupuncture many years ago and didn't like it, I moved and it was really uncomfortable.... I just found out the Dicyclomine/Bentyl 10mg its used normally for IBS for spasams...the Pain Management Doctor wants me to try it so I may...***(if anyone has experience with this please let me know SE's)
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Nola70115 , welcome to the group. I just got caught up with all the posts above and sorry to see you here. Many have already given you great advice and what to expect next. Hopefully your next treatment will go smoothly and is effective in regressing the lesions.
When I was first diagnosed as stage IV, I had bone mets only and I was on oral therapies for almost five years.
Good luck and please free to post here with updates.
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NicoleRod, sorry to hear that your procedure last week did not give you pain relief. Dicyclomine/Bentyl relaxes the muscles in the intestines so I am wondering if constipation would be a problem? I guess if this works for your pain, you can always work around its side effects. Hope you feel better soon.
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Nicole, sorry to hear the pain is continuing for you. It's so hard to cope with never ending pain at the best of times but adding the worry of being off treatment. My heart goes out to you. Sending hugs.
Well, I have to say that this is the longest nine weeks of my life. I've started cycle 2 of Xeloda and, to be honest, am not getting much relief from the liver pain. I just start thinking it's better when I spend a couple of days with a very angry liver that keeps sending jabs that make me catch my breath. I'm not in agony but it certainly get's my attention! I do want to give it time but geez... I'll be glad when we can scan to see if it's working (or not).
On the positive side, my MO reached out to my RO regarding the possibility of SABR. My RO is likely not the right contact as it's another team that leads that treatment but it should get the ball rolling on a consult. The other good news is if am eligible and decide to got that route they do it locally. I thought it might require a trip to Vancouver as most of the more specialized services are there. If Y90 is an option/preferred, I'm pretty sure I will need to travel for it which would not be my first choice given COVID.
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SandiBeach, on the question of progression, have a look at the wikipedia page for RECIST criteria.
Clinical trials had to come up with a way to define and measure progression. I've technically been pfs in spite of new *growth* of lung and bone mets because my liver mets keep shrinking more so they even each other out. Many MOs sort of use RECIST even out of clinical trials to largely gauge response and plan treatments.
If a lesion stays stable, that would not be progression but an MO might still want to change things if it's a lesion that is troubling them or the pt due to location or the system it's affecting.
And fundamentally, RECIST refers to tumors, not the patient....and the two assessments might diverge depending on circumstances.
grannax2 - glad to hear from you!
Nicole - thinking of you.
I'm almost finishing my 7 day high dose oral steroids & interruption of immunotherapy due to suspected radiation induced pneumonitis. Had chemo last week so at least all treatment wasn't cancelled but I'm a bit worried about interruptions to the immunotherapy. Can't be helped though. Scanning again this Sunday should tell us what's happening. Also supposed to be starting rads for my bone met this week. And the steroids are making me looopy and weepy. Was hoping I'd clean the house but instead I'm just jittery and crying over banal tv shows & commercials lol
hugs everyone
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Sadiesservant,
Good for you for at least getting a consult to get things moving. And kudos to your MO for facilitating that. I think that's great. At least you can find out what options are available to you.
Good luck!
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Oh Moth... I had to be on steroids for several weeks last fall to deal with severe headaches from my skull base/c-spine mets. OMG... I swear I didn't sleep for at least six weeks. In my case it did make me a bit zippy. Poor dog thought I was trying to kill her on our walks... LOL
Thanks BevJen. I'm lucky.. my MO is really great, typically pretty open to discussing any options.
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moth
pneumonitis is not good. Glad they are taking care of you. Steroids have their place and can help so much but also have crazy SE.Hopefully you will get back to your immunotherapy soon.
Dee
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Moth, at least you know its the steroids. (Sorry, I know that when it comes to cancer, sentences beginning with "at least" should be forbidden.) I remember not being able to stop crying about something that was not so extremely tragic, and I did not know it was the dexa they gave me with weekly Taxol. My family had some whispered consultation and I think it was they who enlightened me as to the cause of the crying jags.
Grannax2, thinking of you as the saga continues.
SandiBeach, don't worry when you are not up to posting. You are not forgotten. We know we are not forgotten. The connection is strong.
Nicole, I know someone who had that IBS med and when it was needed, it gave almost instant relief (sublingual).
Nola, please check in! It's a busy thread but we do want you to hang out with us.
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Hi all! I am in my second round of Ibrance and sometimes have a pain in my liver that feels like a stitch you get from running. Has anyone else had this? I am on the Ibrance/Letrozole/Zoladex trio. I have just seen that some have progression in liver on Ibrance. I can tell it is really helping the breast tumors. TYIA! Hope everyone is feeling well today!
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Arc1970 I have the "stitch" pain like the cramp from running but I have it from just having had Y90 done...its awful...I can't get a deep breath at times...I don't know much about having it from progression....or from Ibrance...you might want to ask that in the Ibrance thread (if you haven't already)....
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Ok I will, I am still learning how to navigate this site! Thanks so much for your help
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Hello friends. Scans Thursday. Tumor markers increasing a bit, so they pulled in the 4 month scan to a 3 month scan. Just about 2 years now on a CDK 4/6 inhibitor plus AI, with a year on faslodex and xgeva once bones got involved. So feeling very blessed, but praying it continues. His will be done. (Cross-posting to abemaciclib thread - I just spend more time here).
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HopeandGratitude- Pocket duty for your scans on Thursday. Keep us updated.
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Hope...may the Peace that surpasses all understanding cover you during this scan
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