How are people with liver mets doing?
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Lynne yes, let's hope. What's with the surgeries?
Shetland you are always so kind. Great idea with the pictures. I do show them around when I am there. I wanna holler and tell them, you see, this family dances, they laugh, they fight, they make cupcakes…she is a person, like all of us, multifaceted. NOT just a patient.
Ziz that's exactly it, she is so confident in her everyday life, she knows exactly what's the going ons, but she just wants to be able to pretend!
Robin I know. thanks.
Leftfootforw thanks so much
Timothy it's really tough, good luck.
Zar i had to print out what you wrote and go at it slowly, she actually emailed she has NO plan yet, we shall speak in the morning. Gotta prepare the smart questions!
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Thank you Timothy. I agree, there isn't a magic cream or lotion that seems to heal, rather it masks the scaling and peeling. You're right about the burning and tingling, it's pretty much constant. Prayers for you and your wife.
I've decided that dealing with stage IV breast cancer is part of me and who I am.. It will never go away, it will always be in my daily thoughts, and treatment, however it will not define who I am. I am one of the lucky ones. I have a great quality of life and I wish the same for all my sisters on these boards. When I start to let the dark thoughts in, when I feel sorry for myself, I stop and remember the children. Children born with cancer or children diagnosed at a very young age. They don't know a life without treatments and its terrible side-effects. What kind of life do they have hooked up to machines inside a bed that looks more like a cage. And what about their parents? Those poor parents worried that their precious child may die before them. Isn't' that a parent's worse nightmare? When I stop to think about the children and their parents, I cry for them, but not for myself. I have nothing to cry for...I am one of the lucky ones.
So I give thanks to God I have lived a great life and while my time is not yet over, whenever he chooses to call me home, I will remember the children and be happy.
Amy
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Momall, My DH and I are still in Florida. We left Disney World yesterday and are in Naples until Monday when we will return home. I heard that there could be a snowstorm in NH on Tuesday. Perhaps we should stay here and enjoy the war sunshine, beautiful beaches, and gorgeous pool. My DH is scheduled to have surgery on March 20. I will be glad when it is over and he is free from this issue and its symptoms. Hopefully, he will only be in the hospital for a week. Once he has recovered sufficiently, I will have my surgery. Mine is nothing compared to his. I will only be in the hospital for 1 to 2 nights thanks to robotic-assisted laparoscopic procedures.
Amy, I feel the same way you do about childhood cancers. I have a friend whose daughter had leukemia years ago. It was back in the days when chemo was much more toxic than it is today. I remember how difficult it was for my friend to see her daughter so sick while going through all her treatments and to wonder if she would even survive. Her daughter was only 4 years old at the time. Today she is a healthy adult. Like you, I am grateful for the fact that I have a good QOL right now. I, too am one of the lucky ones. I have had many joyful times in my life. I plan to have many more.
Hugs and prayers from, Lynne
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Mom, How I wish you and Dani could just catch a break. You've been through so much already. I hope whatever comes next is finally the thing she needs. Let my wife, same thoughts for you, we all pray the Xeloda is indeed working some magic. Shetland, wise words indeed and I appreciate your words. Amy I appreciate your thoughts too and wish I was as brave as you. Lynne, thinking of you and your DH as you go through tandem surgeries.. You are certainly a tough and resilient couple...
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Artist - thinking of you. How are you doing?
>Z<
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Thank you to all my wonderful girlfriends, for your kind words of support and warmth to all. Lynne of course stay, if not at least put some warmth in the jar and close it tight, then come home!
So, finally Onco called in the afternoon.
First she mentioned Taxol, then another treatment with be a trial with Enzulatamide or the one Onco prefers the IMMU 132. I thought Taxol she already had, we know it's a tough one, the 2nd choice would not be at her Center, and the 3rd she was involved with for TNBC but could be promising for advance stage IV., loss of hair included.
I kinda agreed to IMMU 132, it's a 3 hr infusion, 2 weeks, one week off. So it's pretty much gonna be a whole day affair for her, which she is not happy about. She would have to wait 2 weeks to get the last treatment washed out. Which worries me very much due to ascites, but there is no choice. Onco thinks her lung nodule and everything could get better with this.Of course they are going blindly, and what am I doing? I feel like I am taking her to the slaughter. She depends on my research, on my opinion. What can I say? It's just that so much has gotten worse, that I don't know if we have the flexibility to play around, but which is sure? Even if she goes on Taxol, do i know? Should i go with a more familiar tx like taxol? And I really hate these 2 weeks with no treatment.
If that's the path, then next week she has to spend a full day having pre screening, also, her HGB is low, for this trial it has to be at least 9 or 10, it has not been there in awhile, so short of blood transfusion, let's hope that by not being on any treatment maybe it will go up.
I did not tell her about the ascites or the nodule in the lungs, maybe with time..., PCP and Onco agree. She will be examined, if she complains then maybe we'll tell her, she doesn't like to know much, i hope she does complaint if she feels something. I'll put hubby in charged of spying how she is doing.
I shall be copying this and posting in my other threads, sorry for the doubles.
I shall keep you posted,
Always open for advice,
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mom- tough decisions when there is no right answer. You are doing a wonderful job being an advocate for your daughter. Go with your instincts and tell yourself you are doing what is best for her. Every decision you have made has been for her. You are one amazing person and mom.
Lots of hugs and love to you bith
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Mom - Is IMMU 132 the oncs recommendation? If she has had experience with it, this could be interesting. It has relatively mild side effects which is important for Dani in her condition. It kills all fast growing cells by blocking DNA division which means the heterogenous quality of Dani's cancer won't matter. On the other hand the wash out period is a risk ... but the fact that you can do it at your normal facility is very important
Enzalutamide is an FDA approved drug for prostate cancer. It is an antiandrogen which means that it blocks the androgen receptors , much like fulvestrant, preventing androgen from binding to the surface of the cancer and promoting growth. My question about androgen blockers at this point is whether they will work fast enough. It seems similar to hormone blockers and generally we use them to control slow growing cancer rather than to stop fast growing cancer. Possibly something to keep in your pocket if we can slow this beast down.
Taxol is a tough drug but otherwise phenomenal. I believe LuluBee is on it and seems to have turned her lung situation around.
It seems that you have a reasonable shot at a good result with fewer side effects (IMMU 132) vs a known drug that maybe hard Dani but is a solid performer. Go with you gut.
>Z<
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Momall,
I also was unaware of IMMU132, but it does sound good.
Here are some recent data summarizing their trial results thus far, predominantly with TNBC but as you say they also are extending it rapidly to other cancers:
Overall, 81% of patients treated with IMMU-132 showed tumor shrinkage from baseline measurements. The clinical benefit rate (complete and partial remissions, and patients with stable disease) at six months or later computed to 44%. The median duration of response for those with objective responses was almost 11 months. It was emphasized that these are interim results, since 20 patients are continuing treatment; a final outcome must await analysis of all patients enrolled.
The major toxicity (grade >3) has been neutropenia (39%) in this and most cancer patient cohorts, which has been manageable by dose reduction, dose delays, or giving a hematopoietic cytokine.
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Those results were from a group of 100 patients; 20 of them are continuing on past the 11 months..
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Zar yeah, you kinda break it down the way it makes sense. You are right about the AR, it's a fantastic advantage but maybe not now. And the problem is taxol vs Immu.
My gut??? My gut tells me to run. I am also thinking if people that have ascites are seeing a GI specialist? Should I ask and look for one? Instead of just letting the Onco take care of it. She should actually recommend one, she cannot understand all that is involved in every aspect of the body geography. It's like PCP, I am thinking about that. I wanna ask for a sono. I need more details from this ascites business, it really scares me, because I know how wrong this can go. She seems to just wanna hope for the best.
Cure-ious the thing is I leaned there is something with relativity and statistics the way they say it, so I cannot really understand it. But the thing is nothing really has worked for her. A couple of months is like a miracle. SO, the question is more like choosing blindly.
The bottom line, they have no idea how to deal with her monster, it just doesn't fit in a box. She has quite a few mutations that they have good treatments for but it does not work for her. And she knows it, so let's just say she thinks this whole thing is a game, me telling her we have something new and it's good, it's like yeah what else is new....
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Mom - the bottom line is that the statistics Cure-ious posted for IMMU-132 are impressive. It's just a matter, IMO, of whether the rules of the trial work for Dani. That I do not know.
>Z<
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Momatt- In short, those numbers are quite hopeful! and they are for patients who have been heavily pre-treated. Among the options, I probably would pick the trial, and of course Taxol is something you can always do later, getting in to trials can be harder. With such an aggressive cancer, she might benefit from immunotherapy once she gets to stable. I imagine its near impossible to have faith after so many disappointments, but remember that immunotherapy works best on the most mutated cancers, and so I do have hope for her options in some of the newer drugs out there. Best of luck!!
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Momallthetime, it's a tough call for sure and one I'm sure you don't want to make. It would be so nice if we knew with certainty what will work or even a high degree of probability of it but...urgh! If polling for opinions is helpful, I think I'd go for the trial as well. I think waiting for it is hard but not terribly risky. If the ascites got out of control, Dani would know it symptomatically and it could be drained for comfort and Taxol started immediately, I would think. If the trial doesn't help and tumor growths spurs, then again the Taxol option is there ready to go. The same would not necessarily be true for the trial.
Prayers to you as you find what is best!
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Hey did I tell you already that you guys are the best. It's making more sense to go with the Trial. The weather is not gonna help this week, so it seems that pre-screening is gonna have to wait. But I am in touch with the Trial nurse, we'll see when she could get Dani in.
I am sorry i am sounding so panicky, well I am, it's not even outwardly, it's IN my mind. It's just such a guessing game. And Dani asked the right question, they did so many of these mutations tests for her, they have the results and they are obviously still shooting in the dark. Nothing sticks. It's really weird.
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mom - it's not that weird. It's really hard to treat based on rare mutations. I'm going to post a study about the weaknesses of genetic testing and the related treatment strategies later today...
I am more confident in the treatments that do not target a rare mutation - taxol, immunotherapy and immu 132 - especially when the situation is acute. No time to fart around!
There is some risk that dani does not have the trop-2 receptor that immu-152 targets. But it is a very common receptor on cancer cells and if she does have trop2 this drug will deliver a wallop of chemo to the cancer and leave normal cells alone.
Praying this is the ticket out of cancer hell for dani.
Z
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Hi momallthetime. I've been following the discussion you've been having about Dani's treatment options. You've gotten some great and informed input to which I cannot add much and the trial sounds like a very good option. But I just wanted to mention that if Taxol becomes the best option at some point - now or down the road - perhaps you should ask your doc about Abraxane. As I understand it, it is Taxol with a different delivery method - it isn't dissolved in a solution so it is supposed to be easier to tolerate. It might be good for Dani since side effects seem to be so hard on her body. Abraxane also doesn't generally require the pre-meds that are also sometimes hard to tolerate. I've had both Taxol and Abraxane and the Abraxane was easier but alsohas been deemed as effective, if not more so, for metastatic breast cancer.
By the way, from all I've lurked and seen on these boards, I can see that you are an amazing mom! I wish you and Dani all the best!
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margarita- thanks for the abraxane reminder... there are many people here who need to be aware of that option....
It is more expensive so you have to ask for it. It is a proprietary formulation of the taxol drug that is easier to tolerate. Same drug i believe but the solution is different.
Very important to know ...
Z
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Z you reminded me of the trop 2 receptor, I called the clinical coordinator, he said they will do it, but it's not officially divulged to the "guinea pigs" my colorful language, but being that I am requesting he will check if they will be able to tell us. He says being that this is not a requirement to get into the trial, it's not known to us. So little control. He actually said that they may not do it till the end!! It would be great for us to know beforehand! Why don't they do it, I told him it's just would be a beneficial plus, not saying she would not do it. UGHGHGH, She is scheduled to start on the 30th, pre screening on the 23rd.
Certainly looking forward to your post about the genetic stuff. BTW the Clinical trial is the IMMU 132.
Do you want me to PM with some details that they sent in the paperwork?
Margarita first what a stunning name, it's sunflower – thanks so much as Z said for the reminder. I did read about it in one of the threads someone was giving someone else this advice, and now that you mentioned, you are so right. Hate to tell you, she was on Abraxane over 2 yrs ago, did not last long. BTW, if Abraxane did not do her much good then, what are the chances it would now? Maybe, who knows…. It's not hard to be a good MOM for D, she is an incredible person. My hat is off to all of you ladies, working hard to stay afloat.
I am still thinking if I should bug Onco to do a sono so we know what's with the ascites. Gosh that scares me.
Thank you thank you, for the poll - it was sooo helpful. It gave me a nudge.
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Mom - if Abraxane did not work, taxol won't either. All signs point toward trying the trial....
Given the heterogeneity of Dani's cancer, taking a single biopsy may not tell you much about the whole beast. That is one of the many issues with genetic testing. It may be better not to look for the trop-2 receptors. Trop-2 may be present even if you don't find it in the sample they get for a biopsy.
I think you have to just try IMMU - 132 and see what happens. OMG Dani deserves a break. Let's hope this is it.
Thanks for the correction ... I was typing on my phone this morning ...
>Z<
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Margarita- what a great name! I could go for one right now...
Mommatt- Margarita reminded me to suggest that before Dani goes back on Abraxane, we should do some crowd-sourcing on the trials ongoing that are combining Abraxane with immunotherapy, such as atezo (which maybe the best one!?) and Keytruda. They have been going on for awhile, so we should go read up on this to see what success these trials are having...
For triple-negative, there are some targeted inhibitors in development- one is an inhibitor to CDK7 (similar to Ibrance, which targets CDK4 and CDK6), with the difference being that CDK7 is especially important for triple negative (hasn't been tested in triple positive). You can easily imagine a CDK7 inhibitor combined with immunotherapy and other drugs, too. These are heading for clinical trials, and I see that there are also other options already in clinical trials we have not discussed, but in earlier stage than IMMUN132. So, you have not come to the end of the treatment options here! But, of course. YOU guys need to get Dani onto to something that DOES work for her, and pronto, but when that does happen and hopefully things calm down then there are more options to have in your back pocket
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Cure-ious -
I do like the idea of controlling the cancer with IMMU-132 then moving on to a trial that combines chemo or targeted therapy with immunotherapy. Will start reading.
Keep in mind that Dani will do best with trials that she can access in upstate NY. It stresses her to be away from her kids. This I can totally relate to ....
>Z<
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Wow you gals are very hard to keep up with on the research front. How you research, absorb and remember so much blows my mind. I have to reread many comments when I have time. Z, thanks for asking, I am doing OK. Last scans showed improvement in liver but a few new small spots: one on rib, spine and iliac. The hardest part is keeping my mind from going rogue. It helps to keep working and I m so glad Spring is coming!
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Oh my God you guys know me, know us so well, it's scary. You make me smile. Z sweetie you make me chuckle,it really does stress her out. She made sure these appointment are as early in the morning as possible and hoping she might be home when they get back to school. You are a super Mama too.
What a bunch of smart ladies we got here. How can we lose with these squadron. You guys almost make me feel empowered, all I need is a little powder dust.
I called the Radiologist that read the Pet/CT, i figured let me try. He was very nice, I wanted to ask him if he could give me the measurement from the ascites, he can't but he said it's mild, so I asked him if he feels comfortable that no recommendation was made to get a sono etc...he said he does not feel it makes a difference at this point being in the mild side, but to watch out for symptoms. Not easy when D doesn't want to be so aware of stuff but watch for symptoms, I guess that's what husbands are for. I'llg ive him the job! What if I tell you I didn't even tell him yet either, because first I found out it was late at night, then it was close to the weekend, then I thought tomorrow I knew he was scheduled to work from home and i didn't wanna ruin the hot chocolate for them, I'll have to tell him, but...Well, let's hope the ascites hold.
I will try, maybe tomorrow with Dani at home, trial en route, snow on the ground, i shall try to put all the treatments she has been on,
At the bone thread Lindalou mentioned Ribociclib si approved. http://www.curetoday.com/articles/fda-approves-kis... I know D has the CDK4/6 mutation.
Z, we know of someone I think in the bones thread that was on this as a trial? I wonder how good this would be for Dani. It may be of interest to everyone. Interesting what you mentioned about the Trop2, thanks.
Curi-ous just to make sure at the moment at least, she is ER+PR1% and HER2+ (that changed from original dx of HER2- and PR was very strong. You and Z what a team.
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mom -
Has Dani ever taken another CDK4/6 inhibitor like Ibrance ? Both of my wife's MOs think (they are from two different places) that Ribociclib and Palbociclib (Ibrance) are essentially the same thing.
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At the moment Ibrance or Kisqali (or whatever they are calling the new CDK4/6 inhibitor) is not a big enough hammer for Dani. Also they haven't been proven effective in the HER2+ setting yet. It is too early for the HER2+ CDK drugs and not enough fire power for Dani right now.
Awesome that the ascetites are mild. IMMU-132 will make short work of the whole business ...
>Z<
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Momall
After reading all here I too think the trial is the way to go. Taxol will always be available. With yourbeing so diligent with danis care you'll know quickly if the ascites act up while on the trial and she can always change It sounds like it could be the treatment to curtail the beast. I am praying it does!!!! Danis dealt with way too much!!!
Babs
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Wow, Zarovka, Cure-ions and others-I just marvel at how much y'all know about this disease and all the treatments and trials! You are amazing. Makes me want to keep studying
Momallthetime, sounds like the right path is emerging. Again, here's hoping that this trial kick's butt for Dani! We can all drink a margarita to celebrate that!
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Yep ladies, I guess that's the path. Cheers for Margarita.
I cannot believe it that now I even found something you posted Zar back in 2016 about Ribociclib. And you are most prob right, she really needs to kick this in the butt.
It's also true about trials while people are clinically well, so letmywifelive reminded me that's also a consideration. Yes she was on Ibrance aready!So another one down.
Babs thanks, keep working at this wedding.!
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Mom, I am taking a break from posting for a bit. I felt a bit overwhelmed and unable to give the attention that I want to give to each person.
BUT, I just had to say how amazing you are and how concerned I am for you and Dani and your family. I am so glad you have settled on what looks to be an extremely wise and effective choice for next treatment. I am rooting for Dani with all of my heart and soul.
Also, can you believe just how AWESOME this forum is, and how incredible and caring our "primary researchers" are? What a gift it is to us all.
My general medical knowledge tells me that the ascites will resolve as soon as we can get some of those damn liver mets zapped. Fluid spills out into the peritoneal cavity when the liver is cranky.
Love to each, may the force be with.....MJH
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