How are people with liver mets doing?
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Well, my appointment went well but no clear direction on treatment at this point. I meet with her again next week for another blood draw and to make a decision. Two local trial options: 1) CPI-444 alone or in combo with atezolizumab 2) AGEN1884 (first time tested in humans...not loving it). I may not qualify for the first. Could do Opdivo off-trial, possibly with Abraxane, though insurance doesn't like adding the Abraxane off-trial as much. Looking into trials at Cleveland Clinic and Vanderbilt but I don't see any. Immunos are the first choice, Xeloda the second (maybe I'll join you Scwilly), followed by Halaven. What happened to my back pocket you might ask? Y90 hasn't been going well for patients my onc has had try it in the last year. Progression elsewhere in the meantime of gauging the procedure's effectiveness while the liver is inflamed has been the problem. I trust her and know the load of aggressive cancer in my liver and so can't consider pushing to try it anyway. Maybe down the line if we have more information...if I'm here down the line. Oh, my, how progression rocks one's confidence. What to do? Also, had Gardant 360 done and will do biopsy again to get more info.
Lita, thinking of you next Friday, and Mom, wishing Dani great results despite all. Thanks to all for your comments, reading eyes, and care.
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Z - compelling information, some of which I have done and let slide, I am inspired. Once the mets are "under control" or gone I am planning to stay on Xeloda at a very low dose plus using the ALA, SOD and glutathione. Also raw hemp oil. I too am hoping to find a way to avoid scans but every year I say no more scan then I have at least three.
Schwilly -welcome to Xeloda then. I ended up wishing I had been on it long before I was, long long before. Just takes tweaking for your best dose.
Once I was off the Xeloda for two full days the liver stopped gnawing at me. So now we see again... I start dose on 26th. I don't think it is mets, I think it is toxicity or liver overload. Will try better this time, more Ojibwa tea and use the glutathione and alpha lipoic acid w Vit C.
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Kaayborg - I don't have TNBC so I don't follow those treatment options closely, but MomATT's daughter Dani has been doing various trials that involve standard chemos attached to proteins that make the drugs selective for cancer cells. The idea is lower total dose, but higher dose to cancer cells. This is one trial of one such drug, IMMU-132 but it is really a whole class of drugs that are very promising for TNBC.
I would, in your shoes, consider chemo sensitivity testing if you want to continue pursuing standard chemo options. You still have a lot of chemo options, but you can't play hit and miss in finding the one that will work. I don't have any confidence in these these types of test unless they are the type done by Dr Nagourney.
However, I think the cure to cancer will come either from oncolytics or immunotherapy and you might considering going for it at this point. Oncolytics is the use of engineered viruses to kill cancer and here is a trial at the Mayo clinic.
The immunotherapy options for TNBC are extensive. Here are the search results for immunotherapy trials for TNBC from the metastatic trial search. 52 trials... almost too many to deal with. But if you down select to phase II trials near you that should give you a small set to pursue ... and that may lead you to other options.
I am impressed with the Tumor Infiltrating Lymphcytes Trial and NIH immunotherapy program in Maryland as it gets tough cases into remission. It's not for sissies, but I do think it should be on your list at this point. I can point you to more information on this if you are interested.
It seems we need to be at our strongest, fighting for our lives, right after getting punched in the stomach with news of progression. PM me if you want to talk about your options. Not an expert, but I can offer some possible directions and a listening ear. You do have options. Many options. And you will be here for a very long time. I'd like to believe that your next treatment choice will put and end to this whole drama.
>Z<
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Kaayborg, once you and your MO are settled on a treatment decision, I am sure all will settle down. You do have some good chemo options as well as the newer immunotherapy options. Was Keytruda discussed, in addition to Opdivo? I had heard that Keytruda has been shown to be somewhat more effective in trials but am not sure if that applies to breast cancer.
Zarovka, very interesting about your complementary therapy self-testing and the possibility of going to Japan for natural killer cell therapy. That is something I would definitely consider (the need to travel back to Japan, which I LOVE, would be enough to convince me). I have heard very positive things about NKC therapy. Like you, I keep a close watch on that tumor infiltrating lymphocytes trial. It gives me hope for a "cure" and I want to do it at some point. It is hard to know when to take the plunge on that one - it works better in someone with a strong immune system and not too beaten up by cancer and its treatments but, on the flip side, is very risky. I know of two women with breast cancer who have done it - one hasn't been on treatment for over a year an a half and appears "cured" for the time being or at least in a long-term, durable response state, while the other died (of sepsis) although she was in rough shape going into the trial. Have you heard of more breast cancer participants?
Lita, sending you positive thoughts. I believe you had your MRI today.
Bluebird, it is hard to know what is going on with liver pain and Xeloda but is worth investigating further. It could definitely be caused by liver overload, but could also be caused by dying mets . . .. or of course progression. My liver hurt from dying mets the entire time I was on Xeloda (and my mets were metabolically inactive on Xeloda for over a year during this time).
Mom, I am keeping Dani in my thoughts as well!
I had a liver biopsy a few days ago and the first results are trickling in -- ER+, PR+ and HER2 equivocal (2+). This has always been the case for me, except that when I was first diagnosed with mets, the supraclavian lymph node biopsy came back as PR-. Although it doesn't change my treatment plan, I felt "relieved" I am PR+, since it is supposed to be a favorable prognostic indicator. I have so many unfavorable prognostic indicators, this is throwing me a nice bone. My MO always said it was possible the sample size of the lymph node biopsy was just not great and that I probably was still PR+. On the HER2 equivocal issue, I am going to push hard on HER2 treatments. It seems that more research and work has been done in the area of treating HER2 equivocal with the HER2 meds, which has resulted in positive outcomes. Still waiting for the genetic test to come back (from Caris). My MO is using the genetic test to qualify me for an FGFR1 basket trial that he wants me to do after 3 or so months of Abraxane.
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JFL, mri is NEXT Friday 😉
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Kaaburg. Your MO is not recommending y90 because it has not worked for some of her patients? It sounds like some of them had progression in other areas. I would guess those patients had to stop systemic treatment while they were having y90. But, I'm curious if their y90 did or did not reduce the size of the liver mets.
Sounds like you have several smart options. I'll be watching to see which one you choose.
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JFK - I'ver heard of 2 remissions, 2 deaths and one woman who's cancer recurred after going through the tumor infiltrating lymphocytes trial. So the stats I have on the TIL trial are worse in some respects, but both deaths were women who were very late stage. In that trial they wipe out your immune system with chemo and literally replace it with a new one. If you are not in basically good health coming that chemo phase is too hard. The women whose cancer recurred after the treatment wrote up her experience on Inspire. Not hard to search for. But for those in fundamentally okay health (not headed for hospice), that trial should be an option.
The NKC therapy takes a month total, but only 2 weeks of daily IV's and that is an out patient procedure.
>Z<
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Has anyone heard from Artistatheart? I haven't seen her online lately. I know that she wasn't feeling too well when she last posted, and I am worried about her.
Lynne
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50'sgirl, Artistatheart hasn't checked in since the 18th. I do hope everything is okay with her. Hopefully she will check in soon. Praying for her and everyone else.
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Hi ladies, I just had lunch with one of my closest friends. Her mom was treated for breast cancer several years ago and just found out its recurred and spread - and significantly so. She's declining treatment.
I just don't know what to do or say to support my friend! I feel i should have answers as to what to say and do and I just have no clue. I also feel horribly guilty that I dont know what to do and that I am doing relatively well right now.
Any thoughts? I was going to put together a care package and help her out and be there as she needs it. But it feels so strange to be supporting her while also dealing with it myself. Im at a loss. And really upset! What an awful awful thing this is that we have to deal with..
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jaimemarie, I am sorry that your friend's mother now has MBC. It must be a difficult situation since you also have the disease. I think a care package would be a welcome gift. As far as being there to help is concerned, do you mean being there to support your friend or her mother? What type of help are you considering? I ask because I think it might be particularly stressful for you to watch the declining health of your friend's mother. Even though you are receiving life-prolonging treatment, and she is not, when you see the changes in her, will you be able to keep your mind from going into those dark places where some of us occasionally find ourselves? You shouldn't take on something that will make things harder for you. Your friend will certainly need support. You could make yourself available to listen when she needs someone to talk to. If you are going to the store, you could call to ask if she needs anything there. If she is having a bad week, and you feel up to it, you could take her dinner.
Of course, I have many questions. Why is her mother forgoing treatment? I have to admit that when I was diagnosed I thought that I would refuse treatment, but then I did research and learned that my QOL could be pretty darn good. Is she aware of the fact that treatment for MBC is usually not as harsh as for early stage? Does she know that the published statistics are not up-to-date and that treatments have improved and choices have increased? You have probably already talked to your friend about all this, but I still had to ask. Of course, maybe your friend's mother is 110 years old and figures what the heck!
Big hugs and prayers to you, your friend, and her mom.
Lynne
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Awe Lynne, thanks so much for the thoughtful response. I really appreciate it!
I was thinking supporting my friend. I know her mom and we see each other once or twice a month through my friend but Im not even sure she knows my diagnosis, although my friend does. I love the helpful ideas you have- especially that they are specific. I know I'm more likely to accept help when its specific versus the "let me know if you need anything!" It just is so disconcerting to have to watch my friend go through this with her mom. I can think of things I'd want from people, but supporting someone else who is a family member/caregiver has left me at a loss. Like I should have more answers than I do! I also worry I'll be a reminder to her. And I'm while also seeing a glimpse of my future.
When we talked my friend was getting pretty upset so I didnt push it about threatment. Its been about three weeks since she found out, and apparently when they found it, it had spread considerably. She's in her 60s. The only option they gave her to hopefully get it under immediate control was taxol, and she had that when she was first diagnosed and was miserable. She preferred to keep quality of life for as long as she can. They found out it was now HER+, so i mentioned that there are a lot of new treatments that do a good job at addressing that aspect. But at this point, my friend was upset and i didnt want to press or second guess what has been such a painful decision for them.
Sorry for rambling! This has really left me upset - and feeling out of control!
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I agree with Lynne, years ago tx was more drastic and not as effective. Your friend's mom is likely afraid and not aware how it can be now.
My mom refused tx for her condition and died and it was hard to take. Sometimes impossible to accept. I feel for your friend. You will do well by her, we can tell.
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So sorry everyone for worrying you all! I am OK just lots of procedures an apps and this god awful lack of energy. Still pretty weak and can't figure out why. My computer also went on the fritz, was afraid I was going to have to replace it, but I finally got it up and running again. My hands have significant neuropathy so small motor functions are difficult although my typing is getting better after a week break.
My update is I had another para procedure but it was two weeks in between this time with way less fluid. So the Abraxane may be working on that (I do hope.) On the other hand it seems it has caused some nerve problems in arms/hands and legs. I am using a walker as my balance and stamina are in the dumps. I try to do some laps around the house as often as I can. My Onc had also put me on an antibiotic Cepro which seemed to exacerbate the problem. Also now have swelling in my ankles and feet! Good Lord what is next? It has me concerned as it is listed as an SE to report to your Dr. I hope tomorrow at my next infusion we can try a lower dose and see if both problems clear up somewhat.
Hate to hear all the progression news. kaayborg, Carbo was so good to you I know that must be a big blow. I hope the next plan works just as well or better. We will be waiting to hear.
Lita, Just offering hugs and prayers for you that they get you back on the track too. I think of you every day.
Thinking of Dani too Mom. She goes through so much....
Z, I just don't know HOW you manage to gather so much research and info, decipher it all and still have time to run an efficient and smart complimentary protocol. I am envious.
Got over my bald head pretty fast, it's sort of liberating in a strange way. Here is me with my new wig at my niece's bridal shower. I'm in white dress.
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Artist so good to hear from you. Sorry that you are not feeling well and do hope that you can try a lower dose to find some peace from all the crazy stuff. Wig looks great and you are beautiful as always.
Z, I too stand in awe of you and thank you so much for all the info you provided me with. I spent a lot of time Sat going through things and sent some trial options to my onc who is investigating them further. I will update when I know more. A call is expected tomorrow with an appt sometime this week. Trying to be patient in the wait but you all know that drill.
Also noticed a hard lump about two inches North of my navel, diameter of a large marble, though I can only feel the top...rest is embedded. Lymph node??? Am mentioning to my onc at appt this week of course and trying to keep my mind from spiraling to worst cases. Just gotta find that next weapon.
Best to all.
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Artist - I am very very afraid of losing my hair, even though it is not in the cards at the moment on my first line hormonal treatment. My jaw dropped at that photo. I wish I looked half as good as you do with my full head of hair. Good to hear from you.
Kaayborg - I am so proud of you for fighting on, dealing with these trial options. It can be very hard after hearing the bad news to see the opportunity ahead, or even begin to look for it in the mess of options.
Feeling strangely okay today. Feels odd. I do work hard at fighting this beast. Doesn't usually work, though ... maybe feel good enough to do yoga for the first time in weeks. Hmm.
>Z<
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Brain mets be damned! Eff U, Mr. Cancer. Celebrating new short hair cut to prepare me for the eventual total loss while celebrating what I still have...new porch and patio, my ever-loving Bulldog, and my family of dear virtual friends here on bc.org.
My love and prayers to you all (as I write this with tears in my eyes).
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Artist, so happy you checked in with us. You do look awesome. I remember you saying how you dreaded that time to come when I was losing my hair and was so upset. It's funny how you just seem to accept it and continue on when it's your turn isn't it. After I lost mine and the initial upsetness was done, I've been okay since. The first time I lost my hair, I didn't let anyone see me without the wig. But this time, it's just not that important anymore. I guess since I'm fighting for my life, who cares if I have hair or not. More important things to worry about. But you do look great. I hate you are having a hard time. Praying that it turns around quickly for you.
Lita, I'm so sorry you are also having a hard time. Enjoy that wine, and prayers for you also that something changes quickly for you. I love your new patio. Enjoy every moment out there.
Wishing everyone else the best and praying for better times ahead for everyone.
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Artist. So sorry you're having such a hard time but you do look amazing in the picture!
Lita. As I said elsewhere love the picture and your attitude towards mr cancer!
Z you are always such a great source of information for us all. Glad you're feeling a bit better.
Kaaborg. Hoping you find that next weapon soon!
Hugs to all
Bab
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Lita, you are such a positive inspiration to me. I hope treatments go well for you!
Kandy, I agree with you. I haven't been to the hair lose Stage but I have a friend with bad leukemia and she doesn't wear a wig and she's so beautiful. I think hair is a security thing, but you are right. Fighting for your life is more important. Hugs to you.
Z I love all of the information you give all of us. Hope you are feeling better.
Kaaborg, let's keep our fingers crossed they find something for you to settle this monster down and put him back in his cave!!! Keep us posted. Thinking of you always!
Artistatheart, your photo is beautiful. You look wonderful! Hoping this new treatment works for you!!!
Hugs to all of you on the board!
Aniy
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Artistatheart - you do look beautiful. I wouldn't have known that was a wig. So sorry you are going through this rough patch. But it is just a patch and you will get through it feeling better and stronger.
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Virtual friends, I lost my hair 3 times. I was a hairdresser working at big salon the first time, way back in 92. I found a wig that looked just like my hair, walked in to work and not even my hairdresser friends seemed to notice the difference. At the time, it made me feel good. I was into the look good feel better philosophy. And it worked.
The next 2 times in 2000 and 2009, I was not working. I wore a wig less but still I never even went to the grocery store without it. The first place i went without my wig in 2010 was to my husband's funeral. Perspective.
If I have to lose my hair at some point with MBC, I think I will wear a wig less but doubt I will go wigless when going out. Unlike some people, I don't think I look pretty without hair. My head is not pretty. My mom said they had to use forceps to get me out and I have dents in my head to prove it! Seriously. I'm not a baseball cap lady, and scarfs are hot! But, behind all that, is i would rather not draw attention to myself and my plight. Attention means answering lots of questions and getting those " Oh, I feel so sorry for you." Looks. I know, some people think it's showing bravery to go out bald, to each his own.
All that said, I think it might feel different this time, "Freeing" somebody said. That makes sense to me. Throw in perspective and I might end up being that old lady at Kroger with no hair! Ha
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Grannax, the hair situation is very personal.
I got my hair cut really short at the beginning of my cancer "adventure," and have since gotten a fade buzz cut, keeping some hair on the top of the head, in preparation for the "inevitable." At some point, I will get a wig for important social events, but I plan to go bald most of the time, wearing a broad-brimmed hat as I'm very light complected, and chemo makes one even more sun sensitive. Can't tell you how many new sun spots/freckles I've gotten on Xeloda
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Everything I have been on causes hair thinning. Including the autoimmune hypothyroid symptoms. I avoid washing my hair and have a few techniques so it always looks clean. But I do love it most the day of washing when it decides to act right. Since doing it this way the hair thinning has at least filled in but still looks very thin.
Great photos. Nice seeing who is who. This is from March 2016. My new ones are still in the phone or iPad.
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Had my 4th infusion yesterday and felt miraculously full of energy today. Zoomed around the house on the wheels doing as sorts of light household chores that my DH never bothers with. Hope it lasts. He did lower the dose a bit but said it seems to be working quick as far as the ascites. Yeah! Hope to get completely rid of that problem. Hands also seem to be getting more operational...
Thanks for the comments on the wig. I too just wear it out for social events and maybe restaurants. But go bald a lot and a baseball cap for quick sprints. It really doesn't bother me much. Like Anita and Kandy say fighting for your life is more important. But as Grannax also said "Sometimes I do not like drawing attention to myself". It's much more comfortable without anything on my head for sure. bluebird, You have that nice curl in your hair!
kaayborg, thinking about you this week and can't wait to hear whats next to get you back on track.
Lita, so glad to see you out on your patio getting sunshine. I also am getting weird freckles on Abraxane even without getting much sun. Your short hair looks cute. I love seeing your bulldog every time!
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I've been off living life and trying not to dwell on cancer, but all the while missing you guys.
Artist, I was so relieved when you posted. I was worried. And now I see your recent post says you are feeling better and your onc thinks Abraxane is working quickly. Hooray! Cipro can be nasty. I hope you are done with it now. If not, report everything that is going on to your docs. I was very unhappy to read about your hand troubles as I know you love to make jewelry. Again, report everything. Have you considered cold gloves? (P.S. Yeah, I got weird arm freckles on Taxol if I got any sun at all.)
I can relate to what you said, Scwilly, about feeling more vulnerable moving from hormonal therapy to chemo now. But I feel safer as the weeks go on, realizing that I am living my life just as well on Xeloda as I was on the hormonal therapies. I actually am experiencing a few good things from being allowed to have a little estrogen, such as less creakiness and more eyelashes. But it is a classic case of "Be careful what you wish for because you might get it." Anyway, the main thing is, you are here to see your son off to college and enjoy seeing your other son too, and celebrate your hubby's birthday.
Zarovka, I'm impressed with how you are evaluating your complementary therapies and looking at what they do for you as a unique individual working on treating a cancer that has its own unique characteristics. Very interesting about the CEA. I'll be waiting to hear what you figure out. We are so hungry for the application of all this new genetic and genomic exploration. We need it now, please.
Kaayborg, I'm sorry to hear of progression. It sounds like you have lots of options and I'm sure your and your onc will make a smart decision.
JFL, I think you are being smart to pursue the Her2 thing as well as Caris and trials. I did some research on ERBB2 (Her2) mutations in Her2 negative cancers that respond to Her2 meds such as neratinib, though not herceptin. Let me know if you would like citations. If your Caris shows an ERBB2 mutation, this would be something to pursue.
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Hi all, I just saw Shetland's post about ERBB2. I have this mutation and I responded good on Herceptin+Perjeta even if the man who made the test told me I can't have benefits from it. So it is still so unclear how these mutations react in vivo.
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Artist that curl is how I manage to not have to wash my hair as often, very forgiving.
Lita - 1 1/2 more days until your MRI. Hang in there.
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bluebird...I found that Xeloda dried my hair and skin out so much that I only needed to wash my hair every 7 to 9 days, and I used to have GREASY hair!
Of course, I'd wash the P.T.A. areas daily, but that's about it.
Very tired 2day. Fell asleep furing friend's memorial. Church was hot and stuffy. She was St 4 too.
I shed tears for all of us.
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Lita
, and the bottom line is that you made it. You wanted to be there and you were. I realized I kinda skipped some posts.
Curtsy to all of you beautiful wonderful ladies, thanks for the good wishes and support.
Kaayborg Onco did not want to consider Y90 for Dani, I hear good things about it, but she would not budge. Re: Opdivo, I know someone with Ovarian Cancer on it now in a trial in California. W/T knowing much about a/t this does sound very promising and if you were to add Abraxane wow could be a real punch. I can't believe you have to deal with this now?? The beginning of the year? Are you still on with the school? So sorry, it's a real punch. Yeah, Dani had the Gaurdant360 but Onco is not a fan of it, it was done and it could be helpful, but her take is that it's circulating cells so it may not be so accurate. Liver biopsy should give you more details. It was sent to F1.
JFL was your HER2 sent for FISH? Is that what showed 2+ equivocal, because if so, I could tell you Sloan and Cornell treat it as def HER2+, and yes they give those tx appropriate for it, no doubt. Dani is even continuing on the trial that specifically tagets HER2+ even though she started with an older biopsy showing Triple positive HER2 and then recently with the new liver biopsy it's 2+
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