How are people with liver mets doing?
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Dear Nicole, we are with you. It is always so crazy that no matter what happens with us life goes on:/ Well, I would object with only one thing: your family and your husband, and we need you, so... let's do everything we all can so that you heal and live. Hugs,
Saulius
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RK, Saulius and nopink... thank you so much. Its nice to have all your support. There was this one oncologist I wanted to consult with but they required a referral (not an insurance referral, just a referral from my current oncologist) so I messaged my MO... as most of you know I LITERALLY LOVE LOVE LOVE my MO!!!!! David and I BOTH love her. So I messaged her and just said that the military was thinking of moving us and that there were no good oncologists there but I did want to consult with one to see how much she knew about TNBC and trials..(mind you I didn't tell her about our son and daughter in law moving there later in 2023 etc) ..... Well my MO wrote me back and basically said lets wait on that right now...and that she could write a letter to the military for us to stay here (she didn't realize they are offering us a year alreadyetc).... so basically she loves us too lol... anyway I just don't want my husband to lose that spot and then be sent far away for 2 or 3 years...it will not be good.
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Hi nicolerod, it was good to hear from you. It's a shame that you have been put in this awful decision making process. I hope your scan results will give you information to help you with your decision. In the mean time try not to worry too much (easier said than done) and enjoy your life as much as you can. We are all holding your hand as you go through this.
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Nicole, I pray that you will receive the wisdom you need to make the right decision about the move. I am also praying for good results in your upcoming scans.
My wife had to have her ascites drained. The increase shown on her latest scan, turned out to be a lot more than believed. She spent 36 hours in the emergency room, where they drained almost 5 liters of ascites from her. She feels so much better now. Clearly it is time to switch treatments. We are awaiting a reply from her oncologist.
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Thank you Denny and Husband.
Husband I am so sorry the ascites was that bad..but I am relieved for her that she was able to get some relief!!! Please keep us posted on if they switch treatment.
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Nicole, it so straightforward to me that I felt compelled to respond. You find out about your options, oncologists etc and YOU GOINH TO DO WHAT IS BEST FOR YOU NOW. You do not second guess the future -" what if my husband is sent away , what if it is bad for him" etc. You do not know whether your children are going to stay and for how many years in this town. You do not know whether he would be sent away. You do not know when he is going to retire. You do not know - may be it will be good for him to be sent away if you die - different worlds , different routine etc. Mind boggling variety of options and future. You are trying to make decisions now because of what you believe is going to happen in the future - with so many options I think it is a madness. There , you have my thought. Hope they are not too strong and off-putting for you.
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Anotherone... well you did seem very blunt...but I realize that "writing" we cannot hear a persons tone. First off my husband does know when he's retiring...he has the exact date. Also our kids will not be living in the same town as where he is stationed they will be in the same state..about 2 hours away. They are actually going in April to look at the area and plan on moving in Oct/Nov (his wife wanted to just stay in NY until the baby's first birthday- Oct) My husband will do what ever I want... he has made that clear but I also know he prefers NOT to be sent across the country from our children and grandbaby and NOT to be sent overseas so I do have to consider his wants as well. Our ENTIRE life for the past almost 4 years has been MY CANCER...... I know I don't have much time left I only have 2 chemos left really only 1 Abraxane/Taxol....no chemo has worked yet...and my cancer is now in multimple organs to include the brain..so yea, I don't believe I have much time left with that said I do want to consider what my husband wants.
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nicolerod- I’m going to take another stab at this since you clearly want to consider your husband’s needs in this decision. This may sound blunt but if you only have 2 chemos left, how important is an oncologist that specializes in breast cancer as your main MO? Since you love your current oncologist, can she continue to be part of your team as a second opinion? Maybe that is a compromise that will help you sleep at night. Are there any centers near your new state that offer clinical trials? I live in an area where I have to travel 3 hrs one way to see a breast cancer specialist. That got too cumbersome for me since I’ve had very little stable time so I found a generalist nearby but I’m currently on a trial so the research oncologist is now my doctor. While she is a “generalist” I’m getting the best care and closest monitoring I’ve ever had. And obviously she is up to date on the latest and greatest. Although we think I’m doing well on the trial drug (first scan today), we already know there is another trial that I can consider when the time comes. So if there is a research oncologist that you can add to your team, that may help ease your mind.
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Rk thanks...recently (the last week) I have thought about having my oncologist work with whoever I get there...the thing is where I live now Northern VA 40 min south of DC there are a lot of trials here...that is really what is holding me the most here... I will know more after scans in Feb..but I think David will execute the orders to go there in Sept.
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Hi Fight4two. Your instincts are correct but timing is everything. The diluent for Enhertu must be 5% dextrose in water. Saline is contraindicated. However, you can still have both in the same day as long as you have at least 4 hours from when your infusion ends until when your PET scan is started. Some references use 4-6 hours. Although the infusion is normally 30 minutes, you must allow enough time for any potential delays since the clock starts when your infusion is completed. It could be a very long day. Personally, I would do two separate days. Good luck.
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My CT in Jan showed ascites in my abdominal cavity. Not had this before, but liver turmors were growing also. I have only gained a couple of pounds, but after eating only a small amount, my stomach feels full & extended. Trying to keep energy up with some Premier Protein drinks. Do ascites go away if the tumors shrink or are they there forever. Is there anything to do for them?
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Dear nopink, there are several people here in these forums who managed to deal with ascites well, when drugs they got worked. Ascites is a product of some organs (liver/kidneys) not functioning well, but when function of these organs is restored, it is normal for ascites to clear up. You can also ask your MO to prescribe you some diuretics - in some cases they really can help too. Hugs,
Saulius
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Thank you jhl for the link and confirming what I felt. My scan appointment is basically scheduled to be the second I finish my infusion. It didn’t seem right (who wants inaccurate scans?!) but the convenience was tempting. I will reschedule for infusion and scans on two separate days. Thanks again
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My wife had severe ascites (up to 5 litres drained), which reversed itself when her treatment became effective. Now we are 5 years plus down the line, and the ascites has returned. She had it drained a couple of weeks ago, and she is going in to have it drained tomorrow. We see the oncologist in about a week, to discuss a change in treatment.
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Husband keep us posted!
I just had Brain MRI to see the re-check from the cyber knife and see if there are new mets... Prayers welcomed for no new mets.
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Praying for you Nicole.
My wife went in and got her ascites drained again. The took out a little over 2 litres this time. We have an appointment with the oncologist next week. The abemaciclib clearly isn't working anymore. And, she has developed a cough that only goes away when she takes a mucus thinning treatment called N-Acetyl Cystein. It works very effectively, but we fear this is the lung inflammation that sometimes comes from abemaciclib. It's been 5 months since she had a cold, and that was the start of it, but having it last this long is suspicious. We hope she can switch back to xeloda, which she took 5 years ago, and worked well. The only problem was the high dosage they started her on, but she won't do that again.
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husband - My MO mentioned a paracentisis might help my constant bloated feeling & improve my appetite. Did it help those things for your wife? Did it also provide more room for the lungs to expand? I've had 2 thoracentisis in the last couple of weeks, fluid there also. Don't know which to request 1st, lungs or stomach.
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I'm beginning treatment for liver mets and, since a PIK3 mutation was found, am trying desperately to stay on PIQRAY. Few must be on that agent because the thread devoted to that topic is pretty quiet. A bit strange due to 40% of us supposedly being candidates for it.
I've had a supply of drug for 7 weeks however keep having to hold it for hyperglycemia so have only taken a month's worth. Metformin twice a day and now Jardiance still result in a fasting blood sugar of nearly 200 every morning (100 being normal).
Also, I had a bad gout attack & became dehydrated which required 2L saline with 10units of insulin. These issues sound trivial when I read posts from people who have quite serious disease and little help from medication but that's where I am.
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vlnrph, I am reading your post with great interest. I was first diagnosed MBC last September with bone Mets only, but by December had liver Mets also. My Caris testing just came back with the PIK 3 mutation present. My early response to ibrance and fulvestrant (started in October) has been a mixed bag, so we shall see what April scans show as well as what liver enzymes look like. The MO I see at Memorial Sloan as a second opinion indicated that Piqray is a difficult drug in terms of side effects. She is also involved in a lot of research and indicated there is another drug in the pipeline for PIK3 with less severe SEs. I sure hope they develop more drugs for it since as you mention, 40% of us have it. In the meantime I truly hope you can get the blood sugar under control to stay on Piqray. Best of luck to you.
Take care.
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Believe60, I've been in touch with a UW-Madison clinical trial coordinator about NCT05216432, a study of RLY-2608. This is a PIK3 inhibitor designed by Relay Therapeutics, a biotech firm in the Boston area.
As of last week, it was still in phase 1 doing dose escalation tests and trying to determine whether the drug should be given once or twice a day. Apparently there is no timeline for advancing to phase 2.
Nice that you were able to get a consult at MSK. You've certainly had an intense period with 2 mets diagnoses only a couple years after your original cancer. I have an endocrine appointment coming up in a few days so hopefully that doctor can help me.
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Dear all, with the help of a few other forum members I got to know that our dear Brooke (aka BAP) passed away on the 10th of November. She was 34 years old... And then SusaninSF... uh, my heart breaks. Hugs to everyone, my dear fighters,
Saulius
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Thank you for sharing Saulius... wow... BAP....
. I didn't update you all.. Brain MRI.. no new BRAIN mets...and the 2 that were treated are getting smaller..but there is a New skull met.... PET full body, MRI Liver and CT of Lung on the 13th and 14th..results to follow....
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A part of me dies every time I read of another sister who has passed. The worst is when we just stop hearing from them and we don’t know if they are just too sick or if they have passed. I hope BAP and SusaninSF had a peaceful passing.
Nicolerod - I’m so happy you finally got some encouraging news. You can count on me to be in your pocket on the 13/14th. I’m bringing some buttered popcorn to snack on so if you see grease stains in your pockets, I’m the culprit. 🍿
I don’t think I’ve posted an update on me. I had a CT on Jan 23 after taking a trial CDK2 inhibitor since Dec 1. My largest liver lesion reduced approximately 40% and the 2 other smaller ones are stable. No new bone mets. The scientists are excited about my response.I get my next scan results March 23. 🤞🏻
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THanks RK
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rk2020, 40% shrinkage in a liver lesion in such a short time- yabbadabba doo great news! long may the trial work for you and others in the future
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Saulius- thank you for the update re Brooke (BAP) that is really hard to hear- and so young! it is tragic. SusanSF also - and many others. I think of my carefree life at 34- new mom, no cancer, career on path etc- and can't imagine adding metastatic cancer to the mix and so many young people are these days. I agree RK when they suddenly disappear I hope for the best, but, worry. Lynn- Joyner1 also gone.
Nicole- so happy that the brain is doing well.
RK - am thrilled about your response to CDK 2
Made a chocolate tart with my son yesterday- I think I am going to indulge on this sad day.
Cheers and hugs everyone
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RK2020, that is great news. Thanks for sharing. And Nicole as well.
My wife had a second parcentisis. They only took out a couple of litres this second time. It really makes her feel a lot better. We see the oncologist tomorrow to discuss the change in treatment. Hopefully there are no wrinkles in that plan.
At one time, my wife had a line put in so we could do the paracentisis at home. Apparently they no longer do that. Too bad, as it was really convenient, and we could take all the time in the world to make sure she was fully drained. This second parcentisis, they used a vacuum pump. Next day she had all sorts of side effects. Swelling on the same side, all the way down to her leg. Weird. They must have punctured something in her lympatic system. After a couple of days, it went away.
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Dear all, at least good news on RK's and Nicole's and Husband11 side... I wonder why so little new people join these threads? Mosly only us "oldies" are here...
Saulius
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This "oldie" is still here. I read along. Just don't post much.
I had scans done last week. Still stable on Lynparza (1+ years on it, and it is my 2nd line of therapy). I am moving to every 4 month scans, per my request. MO said ok. I asked to have my Port removed (had 5+ years and on oral meds still). MO agreed. She mentioned something about when I progress she may want me to look at surgery. ??? Ablation? or liver resection? I may do ablation, but I don't want stem to stern incision for removing part of the liver. I don't want that big of a surgery, and the recovery. I live alone. So just have to see what happens in the future.
Sorry for the recent losses on here--- BAP and susininsf. Happy to read of good news. Sorry for everyone's struggles.
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My wife's latest status is that she is going to drop the Verzenio (abema) and keep on the exemestane for another month, and see if the Verzenio is what is causing her the stomach problems. No switch to xeloda yet. She reminded us that my wife isn't as strong as she was back when she first took xeloda, so don't expect it to be as easy on her.
Oncologist was a major downer. She said that if the cancer doesn't kill my wife, her liver will eventually destroy itself as it heals by producing scar tissue, which furthers the cirhohsis and is eventually destructive and life ending.
Her conclusion is that the worsening ascites is a result of the cirhossis that will inevitably progress (although that progession isn't evidenced by any imaging), and that it is not a sign that the cancer is progressing. That it is different from the ascites she experience 5+ years ago when her cancer was newly discovered. Thus weakening any argument that cancer treatment should be a priority. Sounds like speculation and opinion to me, and not a fact. I don't think we have heard anything more depressing and fatalistic in years. I can't imagine what a gut punch that is to my wife.
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