How are people with liver mets doing?
Comments
-
Hi Momallthetime,
Sending warm, healing hugs for Dani and you.
I too am experiencing liver progression, but am at a different stage of life than Dani and finally made it to hospice after beginning my breast cancer journey at 34.
She's still got much to live for and I know that everyone is working hard to ensure her life on earth.
Back in June, Dani's team looked for a BRCA somatic mutation in her tumors to see if Dani's cancer might respond to PARP inhibitors.
I explained in my response then that a germline genetic mutation is different than a somatic mutation of tumor cells. The former affects her offspring and maybe her other blood relations. A somatic mutation is about the tumor and possible treatment options.
https://community.breastcancer.org/forum/8/topics/...
It sounds like a germline genetic test for TP53 is being suggested in the off-chance of explaining Dani's early and aggressive MBC. The test results won't provide any targeted treatment options (they aren't there for TP53 mutations), but if she has a TP53 germline genetic mutation, other blood-related family members may also be at risk for Li-Fraumeni syndrome.
Hopefully the geneticist is also a genetic counselor and can sit your family down and explain the meaning of the test before doing it!
I hope too that s/he has a full family medical tree of Dani's blood family and can counsel you first.
This is a time consuming process, but a positive germline genetic mutation changes the lives of all of the entire blood family, not only the patient.
Personally, I think it's irresponsible to offer germline genetic testing to patients without complete counseling that includes conversation, a blood family medical tree and exploration of related topics. Germline testing can be a wild shot in the dark that may may injure unsuspecting and innocent others.
This might be on your list of things to attend to, but probably isn't at the top of the list for keeping Dani alive, well and receiving the best cancer treatments.
Healing wishes for you, Mom, as you navigate with a migraine.
warmly, Stephanie
0 -
Timothy, maybe they want to put the stent in while she is not in a crisis? Maybe it's safer to do when the organ is not compromised so much by inflammation and disease. You are in my thoughts....
0 -
I wanted to introduce myself as I've been lurking in this thread since I was diagnosed a few weeks ago. I just starting this journey, but have found comfort reading your discussions. It's empowering to see others living their lives, dealing with the issues as they come along,and to know I'll be strong enough to do the same.
My diagnosis was a bit of a fluke, before I recognized any symptoms. But now that I know, I can see the first signs that my liver is under stress. A little asymmetrical puffiness on my right side, a side ache anytime I over exert myself, and a sensitivity to uncomfortable clothing around my waist. Really not much. My onc commented that we'll wait and see, hoping that I'll have a positive response to treatment that will ease back the symptoms I'm experiencing.
I am curious if there are lifestyle/nutritional changes that I might look at specific to supporting my liver?
0 -
kaayborg, I thought I had worries about working! I work for a school too and carry our most excellent benefits. When I can't work anymore I will lose a decent salary and benefits for both my girls and Dh. We have definitely upped our lifestyle as the money went up. So now we are trying to slowly downsize and prepare but on top of everything else it's slow going. I am sooooo glad I've built up my sick days all these years. But the office running without me would get ugly very fast so I am not sure how this is all going to shake out. However, my Dh is working so WOW, I don't know how you do it! That is quite a load for someone who is dealing with all of this too. How many kids do you have? Are you a teacher? I hope you don't get many SE's from the carbo and are able to just just sail along this school year. Best wishes for hubby's career hunt.
0 -
Longterm so sorry for the progression. It must really bother you. Is there something they could help you to alleviate that feeling? Who helps you with the drainage? Re: Dani, Thank you so much for the reminder, I reread it. Love your input. The truth is it was a Genetic Counselor, and she did explain but the more you read the more you understand. I tell you the truth, it's scary that's for sure. As you said, there is no target therapy for the P53 but if they even have a small suspicion the way we are looking at it, it's only responsible to go for it. Unhappily. But not to do it, then she and I, we are gonna be wondering the whole time. Dani has 2 sisters, and 2 little girls, I don't think she has much of a choice. When do we say no? And they also wanna check for PALB2 that was not around a few yrs back when she was checked for BRCA1/2.
Artist with the enzymes going down, is it worth it to continue on Ibrance? Is it not irritating your liver? If Ibrance is the culprit, what's the plan?
Barbe so sorry for the way you are feeling now. Are you having the ascites sucked out? What's the plan?
Timothy I don't know the details of how you deal with the docs, but if you are doing the research and you think you would know to speak with docs more directly, would be a good idea for them to have your number and speak to you? Would that work for your wife? It all depends on how you guys like to tread on these issues. I know docs don't like to spk twice to family, that's why I am mentioning this. Also, from experience, do you have a Health Proxy, a Power of Attorney? Both. Even if you are a husband, and officially next of kin, things could get very messy very fast when you get underpaid overworked professionals with ego issues. I just read Hospital Stay Handbook, by Jari Holland Buck. It's all there. She did everything for her hubby, was with him 24hrs at the Hospital, but you get one wacko and she was almost barred from being in his room.
Kayyborg so glad for you that you had less SE. How many kids do you have? It's beyond hard to have to worry about Money. This is beyond difficult. I wish the best of luck to resolve this asap.
Shelby wish you the best. They didn't decide what they gonna do for the liver for Dani, my daughter, maybe after scans tom and after Rads Onco visit on Friday. Onco said they might not know much by doing biopsy that would change treatment now. So she would be on Navelbine and Herceptin. But so many here are on Xeloda. She was on it, 2 yrs ago on it's own. But maybe Onco wants to keep it for reserve. I mentioned it, but she prefers this tx now.
Sherri sorry you have to join, but this is a wonderful set of the best people, so we will all help you through.
0 -
Momall. Sounds like the new once was very thorough !!! Glad to hear that!!! Rushing to meet someone now but just wanted to see what happened with Dani
Bab
0 -
Arstist, I am a teacher...first and second graders. Next year is a first grade year so it'll be back to the training basics but the reward is I keep them for another year as second graders and things fall into place quickly and smoothly. Unfortunately, the way it works with our contract is that maternity leave comes out of sick leave so having had 3 children in the last 12 years, I don't have as many sick days banked as I would if I were a man (only this illness illuminated this inequity...had no complaints about it before). They're not exhausted but one year of treatment uses more than the 15 days I earn in a year, so once my surplus is gone, I'll be running short. I can use up to 45 donated days as well so hopefully it will all pan out. I am careful to use as sparingly as possible. I'd prefer to keep the half days. My daughters are 12, 10 and 7. Pretty adorable if I do say so myself!
0 -
Kaayborg, your girls are precious!!! Thank you for sharing the pic!
Melanie
0 -
Kaayborg- your girls are just adorable! Cherish every minute you have with them!!!!
Babs
0 -
A BEAUTIFUL family, sweetie!!! They must really give you joy.
0 -
Sherri - welcome to our group. I have to check BCO every day just to hear to people chatter on about how they are dealing with the cancer, the treatments, the side effects and the fear and get strength from it. My life is otherwise pretty normal and cancer free. In fact, very few people except my husband and kids know i have cancer. It's been very helpful to deal with my cancer here and keep it out of the rest of my life.
Anti-cancer A New Way of Life is my choice for diet and lifestyle changes that will improve my odds. Many people like Radical Remission which I believe goes beyond diet and lifestyle but I got what I needed from David Servan-Schreiber and this forum. Most ladies here are trying to live Radical Remission and the discussion here feels more grounded in (a very tough) reality.
I see you are triple negative. The TN ladies may have caught some breaks in terms of potential treatment options, finally. Lots of hope. Check out the triple negative thread and ask your oncs about clinical trials. There is a lot of change in TNBC treatment coming along which means that getting second opinions and seeing doctors who specialize in TNBC will be very important for you. Doctors vary in opinion particularly as things are changing.
>Z<
0 -
Anyone out there dealing with ascites? I have to have 2+ liters pumped out or I feel full to bursting. Any tips? Herbs, abdominal binders, exercises, sleep positions? I go back in for a second Doxil next week.
0 -
HI Dancing Veggie,
Let's see, practical tips for living well with ascites.
Mine began in January 2015 and by August were bad enough to have a drain line inserted into my belly.
An average of 1 liter is removed each day, but I still get the swelling, fullness, discomfort, reflux, reduced appetite that trouble many with ascites.
Here are a few practical tips:
* No tight clothing or binders! Wear drawstring hip hugger pants or elastic waist pants and skirts. That liter weighs 2.2# and I can gain and lose an inch of waistline daily. Now is not the time for vanity and a small waistline! Wear tops that skim your belly, rather than bind it.
* Eat small meals and wait at least 4 hours after eating before bedtime. Avoid foods that lead to reflux - oranges, coffee, tea, spicy food.
* Drink plenty of fluids, especially around drain times. Replenish with electrolytes like coconut water & broth.
* Good mouth care - the dry mouth after many months of draining is terrible - so I drink water frequently, rinse with glycerine and marshmallow tea. Some people swear by biotene, but it didn't work for me. sometimes holding a bit of coconut oil in my mouth helps. I avoid salty food, most food, after 4 PM.
* Sleep on back or side, not belly.
* I hold my belly with my hands and rub gently in the direction my colon runs - lower left up to liver area, across upper belly to upper right and then down right side.
* Exercises like gentle walking, yoga and stretching help. Anything that compresses the belly like the yoga poses of forward bends and child's pose don't help, nor does vigorous exercise that jostles the belly.
* Stand up slowly after draining and watch your blood pressure - mine drops very low, while heart rate races. Don't fall down.
Dancing Veggie, hope you find something useful in here. Please take what you like and leave the rest. Try it out for yourself, don't take my word on it.
May Doxil be your friend, ally and healing savior from ascites. Ascites suck vital energy, as does draining.
Fingers crossed you find something that stops that sucker!
warmest healing wishes, Stephanie
0 -
Oh my gosh kaayborg, they are pretty adorable all right! You have been triple blessed for sure! Funny, looking at your cute little picture just made me think of you as a Primary grade teacher. Again, I do not know how you do it. I watch the teachers at my school every day and think that the job never ends. Not at night when you go home and grade papers, go to meetings, on and on...and still be an awesome Mom to 3 girls. My hat is off to you! I am very careful not to use my sick days either. I also have some in the sick bank but we all know how quickly they can be sucked up. Soem days I think I would love to go out on SSDI so I can do all the things I never have time for. But deep down I know we can't afford it and I would really miss all the interaction i get at my job. Keeps my mind off of all of this...so 3 more weeks and back I go! Longterm, All of your experience and advice is sooooo invaluable, I can't say it enough. You too Z. I am ordering that book today. The one I was reading last night was too negative and focused on "the grim statistics". Really dragged me down. I wish I had kept my diagnosis to myself more......
0 -
Guys thank you so much for your support.
I must comment on your picture Kaayborg, oh my gosh, they are just so precious!! Love it! Zar also has little ones, and I see with Dani it's just so hard! How much can you ask of someone? You doing great.
I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person.I can't even…. Anyway she told her to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) anyway to make sure about the therapy. Off she went on Friday.
Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)
Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time. And uptake on the right Hilum. Are we talking lung here?? And nothing much on the node that doc felt! Something there but they are not sure what.
Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.
They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.
I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!
I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.
AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!
Everyone thank you.
P.S – Warning, I am posting the same info in the threads I belong to, so be prepared for doubles.0 -
Momall. Wow! And two incidents with the cab!!!! Just too much but at least that made you laugh. I'm sending you a pm now
Babs
0 -
Momallthetime, no words of wisdom or advice to share, just gentle hugs during this challenging time.
healing regards, Stephanie
0 -
Drained Bev's ascites drain just before a visit to the liver specialist. Once again, only a tablespoon of fluid. Her stomach is looking so much flatter as well. Liver specialist is no longer pushing for the liver shunt to be installed. Fantastic! God is answering our prayers. Doc says we will look at the MRI after 3 months on the blood thinners and see if it shows improvement. He doesn't think any kid of testing right now is warranted as its too soon to show improvement. I take that as meaning too soon to visualize or discern an improvement. The changes would no doubt be subtle.
Momallthetime, you are in my prayers.
0 -
Thank you beyond words for everyone's caring. It's so humbling.
The best way to know what's going on in the liver would it be through MRI? Also Onco only wants to treat it systemically, as with Navelbine and Herceptin. She does not think biopsy is necessary, how true is that? I would love to hear an opinion from you guys here.
TIA
0 -
That's great Timothy, a respite! I also wonder about an MRI for liver mets. Does it show more subtle things than a PET?
0 -
So my pain hasn't been from my liver, the raised numbers could be from a virus or a reaction to the fact that the tumour in my kidney has doubled in size. On to other scans and tests. Thank you for allowing me to walk with you for a short time. You are all in my prayers.
0 -
Wowow Barbe, good luck. Are they doing it soon? Did they not see it in BT?
0 -
What is BT? I had a bone scan yesterday (they move fast here when you're stage IV) as something had shown up on the last one on my right rib. What we thought was liver could be the uptake area that showed up in January. I see my Urologist in August for an update on that pesky little kidney tumour.
0 -
My liver mets are stable, thank goodness, but have a 3" tumor on my iliac bone. Ct scan report says the bone is destroyed. Not sure what that means. Will have to wait and talk to my oncologist. Started radiation on that three days ago. The tumor is causing a lot of pain. My oncologist decided to stop my chemo and pit me on arimidex, last time I was on it was 8 years ago. Supposedly after a long break from Ai's they can be effective again. It's worth a try. I'm hoping it works. I can use a break from chemo. Keeping all liver mets tears in my prayers. Hope we all get good news from scans and relief from pain
0 -
Me too GatorGal! I'm sorry you have this new issue to deal with. Is that tumor new since your last scans as 3" seems large for such a short time span.... sorry you are feeling so much pain with this. I think you will feel relief fairly soon from the rads. I've heard too than returning to the AI's is very feasible. Many women on here have done so. Enjoy your break from chemo. I'm praying it works too and you get a break. You are in my prayers too!
0 -
Barbe i meant blood test.
Today's visit with Onco was "heavy". Onco and I were having "the convo", hmm, yeah like I am not ready to tell my little girl. We have to think about it. She is not happy with all the lesions in the liver, it's specs all over. IN 4 freaking weeks. Just exploded from 2 discreet ones! She hopes the Navelbine/Herceptin takes hold. All the bones showed progression. Brain MRI was not much better. So at this point we can only pray that TX should take hold. Is Rads advisable only when it's in a smaller area? More concise? They are not looking to radiate now.
i do wonder what's a good way foodwise to rid this "things" out of the body.
GN everyone,
0 -
Momallthetime,
Do not give up hope. I had a liver "explosion" on aromasin/faslodex/ibrance combo. I went from mini metastasis throughout my liver that were inactive, to my left lobe described as "nearly entirely comprised of metastatic tissue" and very large, innumerable tumors on my right lobe, in a 3-month time span between scans. I had 7cm tumors where there was no evidence of disease previously. Since then, I had my first 3-month scan after switching to Xeloda and my liver mets have substantially shrunk and are inactive again (no increased metabolic uptake on a PET scan). The good news about aggressive cancer is that it generally responds very well and very quickly to treatment, particularly chemo which targets fast growing cells. Quick tumor growth, quick tumor death. That has been my story since diagnosis. Hoping the new chemo regimen will get everything under control very soon.
As for scans, I have had PET/CTs and CTs. I have found the PET/CTs to be more reliable for me on liver mets because they show where the tumors are inactive or active. I haven't had an MRI on my liver.
With regard to biopsy, it is probably not necessary given that she has already been diagnosed with metastatic BC unless they are concerned that her cancer mutated into a different form (such as from ER/PR or HER2 positive to negative or vice versa). In that case, it is important to know to tailor the treatment accordingly. There are other reasons to get a biopsy but it is not always indicated. I haven't had my liver mets or bone mets biopsied and have had mets in both areas since mets diagnosis.
There are targeted treatments for liver mets (radio frequency ablation, liver resection, radiation, etc.), which are usually only indicated if someone has a few lesions but not for more wide-spread liver involvement. I don't hear of radiation being commonly used on the liver, though.
0 -
Timothy, YEEHA for the good news.
Gatorgal, sorry for your progression. Same story here, liver looks stable. Bone mets in every vertebrae, some ribs. The PET scan reported scary stuff in my lungs. My MO blew that off, said it was the chemo. She seems to not want to disclose all the bad stuff to me. Hang in there.
Momallthetime, my inummeble liver mets responded very well with Taxatere. I had 6 infusions, 3 weeks apart. My liver was swollen, hard & painful. Hope your Dani can handle the treatment, and you all receive better news soon. I always tell people, glad it's me, and not one of my adult kids.
Hello to all, Barbe, happy for you. See you on other threads, or hang with us.
0 -
Momallthetime, I echo JFL and Holeinone. Controlled inummerable liver mets here as well.
Timothy, so incredibly excited to hear the fantastic news!
GatorGal, prayers for controlled pain and soon. Liking the idea that past tx can be effective again. Hope the chemo break treats you well.
0 -
JFL thank you so much for giving me the details it's important. I asked for Xeloda she does not wanna give it to her now. I asked if she could get something more aggressive than Navelbine, they told me it's aggressive but it's well tolerated. I think they will do another scan in 4 or wks, if it's not good I'll ask for a taxol or something.
She did have a biopsy 1 1/2 ago when it started spreading in the bones like a bonfire, it showed that her status did change to HER2+ everyone was so excited bcs they thought she would be helped with all the new targeted HER2+ tx, but it failed her. Constant progression. She did not have a break for yrs. She's now 32. And the last 2 mos it went to the liver. She did get in the skull for 2 yrs already. had Gamma done and radiation to the skull. And now it's growing very much there again.
I was hoping for ablation. We got messed up with the prior Onco dragging his feet also. I think. Now...she does not know yet. And i will have to talk to her about doing Rads to the frontal part of the skull, which will leave her with a large bald patch and no hair regrowth. She thought she does not have to do it, but it's not looking good. And so it goes...
But now doc does not see a reason for biopsy, I was also thinking maybe there is a new mutation. They don't think so. they think it's the process from this monster. But, I may still ask again, bcs what if now she is Triple Negative? We'll see.
She was trying to "go there" with the convo, I spoke a bit about it, but it's surreal.
Holeinone I know what you mean, thanks. I asked God to make an exchange. I am just in my mid 50's but I did live more, and she has these little girls, they are so attached to her, I can't even....
Gatorgal hope you feel better soon.
Guys, thank you soooo much, it's so good to come here, and be able to discuss these things with you, you get it. And learn from you so much.
Warm hugs,
0
