How are people with liver mets doing?
Comments
-
Kaayborg - So sorry to hear you are in the hospital. Hoping the fevers resolve and you get a good response to the eribulin and the Pembro without too many side affects.
0 -
Kayborg. Sorry you're in the hospital. Hope you get out of there quickly!
Wendy this disease doesnt happen because of what we do or don't do. It has a mind of its own. What it does is it puts us on a roller coaster with highs and lows. Once you have a plan in place you'll feel better.
Lulubee I'm so glad you're a Phoenix. I hope we all are for a very long time!
Bab
0 -
His bill can hold more than his belican. I love that stuff! Good to hear from you Shetland and with a new treatment option for your pocket, too!
I'm feeling pretty swell today. Time or antibiotics or rising neutrophils must be doing something for me. Hip...hip!
0 -
Kaayborg - Great news that you are feeling improvement today! Hope it keeps up so you can get home.
Jeenee
0 -
Kaayborg. Glad you're feeling better. Hope you'll be home soon
Babs
0 -
Wendy - darn on progression. Same thing for me with Taxol, I had some improvement but it stopped working shortly after. This disease has a mind of its own. Hang in there, we're all with you.
0 -
Thanks Linda I'm sorry Taxol didn't do better for you. Sometimes I think they leave us on a drug just long enough to get the worst SE then we come off. Grrr.
kaayborg great that the drugs are working that's wonderful. I'm sorry I didn't realize you were in the hospital here's hoping you get out of there very soon
0 -
Mom. Still praying. Hope you can give an update soon.
0 -
Momall - thinking of you and Dani.
0 -
Shetland - Thanks for your comment about faslodex. I am on letrozol alone while I figure out what I do. I am surprised at how well I am doing. The more I learn, the more hopeful I am that faslodex will be easy.
Adoptive cell therapies provide one example of immunotherapy treatment might work better earlier. NKC, CAR-T etc all belong to a class of treatments where they extract white blood cells from the patients, expand and activate them in a lab, and then re-infuse them in the patient. The main challenge for this class of therapies is that immune cells that immunosuppression in the tumor limits lymphocyte activity in tumors. In the US we believe that these treatments are not effective on cancers that setup solid tumors for this reason.
However, micrometastases, the kind you don't see in scans, are too small to setup effective immune suppression. They more are vulnerable to the whole class of adoptive cell therapies. When you get ACT treatment done with minimal or no visible mets in scans, it can be a clean up job on very vulnerable cancer cells. There is a higher likelihood of achieving remission with minimal or now mets. Adoptive cell therapies are very effective at a later stage, especially when you look at outcomes vs side effects relative to your options. However, the chances that there will be still be cancer after the treatment are higher. Multiple attempts or a more complex protocol will be required to get a durable response.
PDL-1 inhibition is a treatment strategy that is statistically more effective in patients with a high tumor mutation burden (TMB). Per my F1 report, I am less likely to respond to PDL-1 inhibition due to a low TMB. I myself have suggested that people find out their TMB before going into keytruda trials ... the statistics are real, the odds it will work are different. But it's a statistical thing. There is an advantage but the numbers are not overwhelmingly against trying PDL-1 inhibition with a lower TMB. As a single agent, maybe. But as piece of a larger strategy Keytruda could be important even with a low TMB.
The only MBC patient I know who achieved complete remission after a tango with Keytruda had a low TMB. It was almost certainly the keytruda that put the nail in the coffin for her cancer. However, she did PDL-1 inhibition in a particular sequence with a combination of other therapies. Some standard of care, some not. Her husband is a cancer researcher with a specialty in immunotherapy. He rolled up his sleeves and tried a few things available in Europe and it worked.
I looked into immunotherapy thinking I was researching for the future. I thought it would unlikely do anything now, based on advice from doctors here. When I got into it more deeply I found these statements were over-simplifications. Of course cancer can be more visible to the immune system as it becomes more differentiated from normal cells. It's just not the only thing going on. There are many factors to weigh.
If immunotherapy seems like the way to go, the path through this patch of the woods will be very individual. You need a medical expert or two or three to get through it. My point is that it may be something to explore sooner rather than later and if you start pressing for immunotherapy early, you will likely battle through over-simplifications repeated in the research community here.
I forget whether I posted this trial on this thread or not, but I really like it. It's in Buffalo NY. They have engineered CAR-T cells to attack a certain protein that may be expressed by cancer. Your cancer has to express the protein, a lot, for this to work. But the key ting is that they believe they have engineered the CAR-T cells to overcome tumor immunosuppression. If I were in Buffalo NY I would be visiting Roswell Park and asking to be vetted for their trials generally, and getting a second opinion on treatment options. They have a lot of interesting stuff going on. And, of course, I would not wait to consider these advanced treatments.
Z
0 -
Mom - thinking of you. Thinking of Dani. What pile you guys have on your plate right now.
>Z<
0 -
Z - for drinks, I am using high alkaline water with electrolytes added. I was on Ibrance and letrozole for 4 months, it was wicked for me. Couldn't figure out which was hitting me so hard or was it the cancer. It took my will to live, strength, appetite, took everything I had to do anything at all. Sometimes I just want to go back on Faslodex / Arimidex now I know the cough was not from that, it was the cancer. Wonder if it will be "allowed" for me to do so.
Wendy - that is such hard news to hear when you are expecting SEs instead. Same when the liver lesions were growing, I thought it was cancer cells dying off, thus the pain. One foot in front of the other. I hope you also rest, relaxation is healing. I am watching a multitude of movies I always wantedto see but no time. Though soon I hope to be bored of that and out walking again, if I can.... when I can.
0 -
Blonde1-
I’m sorry to hear you have increased Liver Mets and an enlarged liver. I haven’t had to cope with the discomfort of that particular symptom.i donexperience a sense of fullness and pressure which I’ll now check in with doc about.
I’ll be starting a new chemo this week to address progression in liver and elsewhere. It’s called Eribulin. I had been in a clinical trial Ribociclib, exemestane and everolimus. Apparently a great combination for me. It kept disease stable for over 2 years. Entering a new trial, but I understand this drug is available outside of trials.
I’ll be posting treatment progress and side effects as I go.
Hope you find relief and an effective treatment!
Jeene
0 -
Has anyone heard from Mom?
0 -
Kaayborg how are you feeling? Are you home from the hospital? My doctor informed me that the original 2cm tumor in my liver increased to 4cm. They gave me a disc after my PET. I hadn't realized I could view it at home. I saw the 2 extra ones and thought the one had increased. Technology is amazing. Who would have thought you could read your own scans? Of course I had no idea the size of the tumors. My local onc is referring me to a TNBC specialist in Dallas with Texas Oncology. I hope to hear about an appointment Monday. They have several trials too. My onc thinks they will put me on gen/carbo combo. I read about the side effects online. What are y'alls experience with these drugs? It's scary as hell to see progression. I'm planning trips. We just got back from NYC and had a wonderful time with friends. The day after Thanksgiving, my daughters and I are going to Orlando to Harry Potter World. They grew up with my reading these books to them out loud using different voices. They are now 28 and 33 and still love him. The pics are of my NYC trip with my friends and also my daughters.
0 -
I am home now! No found infection though I continue on oral antibiotics. My youngest has strep (I really think I did, too, despite the test being negative). I'm not sure they ever got the results of the longer test from the ER at a different hospital but it doesn't matter. Treatment stays the same and I am better.
Kaylynne, we are going to New York the weekend before Thanksgiving. Starting to get very excited. I also live with a huge house of Harry Potter fans. We do need to plan to get out there, too.
Your progression sounds very similar to mine...about a 2 cm increase along with new leisons, though I had many more leisons. I'm so glad your are quickly finding a new treatment. My experience with gem/carbo was a very good one. It took lots of adjusting to find the right dose that was tolerable...we decreased gemzar a couple times and then dropped it all together. I also needed the help of neulasta and neupogen to help with white counts. All this happened over the course of a year. Then I had an allergic reaction to start the second year, but doing 16 titrations and premeds prevented it and I stayed on another year before progression. I felt very well on it but I know others have had a harder go. I wish the best for you. If you do decide to go with a trial, get it moving as fast as you can and don't be afraid to ask how you can start sooner. I waited for a trial, ended up not getting and in the meantime those tumors just took over my liver. All did work out in the end as eribulin has things back under control but I thought I'd give warning from one tnbc gal to another. Don't delay if you can help it! Next treatment decisions are so difficult. Praying wisdom for you!
I do hope to hear from mom soon! Dani is still on everyone's mind, mine too!
0 -
I am working in Santa Monica this weekend. Look how pretty the ocean is. Makes weekend work a little easier.
0 -
Lovely. Thank you for sharing.
0 -
Lalady so beautiful!
Kaayborg. So happy you're home
I speak to Mom. Dani is going through a tough patch. She's sooo fatigued and starts rads this week.
Babs
0 -
Wendy, 50'sgirl said it so eloquently for all of us. I too believe you would be in way worse shape if you had not done all those things for yourself. I am so bummed for you to hear the dreaded word. May you be in a new rhythm soon with the new Tx and back to your wonderful cheerful self soon.
kaayborg, I am so glad you are out of the hospital and no infection! NYC sounds like a blast. I hope you, your girls and DH have a wonderful time. The lights are so beautiful right now!
jee nee, My biopsy was way easier than I expected. A minute or two of uncomfortable was all.
Shetland, I have been so well in my life up until now, I think I just expect the DR to be the expert and take good care of me. With this cancer Dx I am finding out that that they are merely facilitators and we have to be the researchers and advocates. I find all of the information and research so overwhelming and hate to spend my "good" days doing all of this work, but realize I must. His PA does bring all my info to him during the appt and I do think he is training her. But it seems they sort of ignore the ascites issue. No one seems to have a good answer as to the question "when do I know that I need to go in"? Supposedly you don't want to unless you have to but waiting that long can be hell. When I told him about my last procedure he just said "Well, time to do some treatment then". I see HIM again this week and then a scan Wednesday. But am definitely feeling much more assertive after the last time, Thanks to you and Babs!
Lulabee, Continue to be the Phoenix for us all!
0 -
kaylynne, Have a blast at Harry Potter world. Your family is very cute!
0 -
Babs - thanks for the update on Dani. I think Mom has the grandkids all weekend and I imagine that and worrying about her exhausted daughter keeps her away from the computer. Praying this is over soon for them.
>Z<
0 -
I did hear from Mom. Treatments moving forward with no significant problems but getting Y90 and rads at the same time is simply a bear for everyone involved. Can you imagine?!?!?!?! Of course Dani is exhausted and Mom's exhausted. Send your prayers to these strong ladies. Dani is facing more rads this week.
>Z<
0 -
Z Do you know what day Dani will have the y90? Rads and y90 has got to be overwhelming. The rads are to orbital, will they do 10 treatments? I'm so glad she has her mom for support and all of us praying.
Kaayborg so glad you're out of the hospital. Home sweet Home.
Kayline. I'm glad you're coming down here for a specialist. It's great that you're planning vacations, too.
0 -
I believe Y90 was friday and rads are going on this week. I am not sure but I think Dani had rads last week, then Y90 and now she is having more rads this week ... so 10 sounds about right. Send strength ladies. That is one tough protocol.
>Z<
0 -
You are right Z- That is a lot to handle. Thinking of you Dani and mom. Prayers for strength to get you through this. Stay strong ladies.
0 -
Thinking about both of you today Mom and Dani and saying prayers for your continued strength. I cannot imagine going through both of those at the same time. You have come through a lot together and soon this will be a distant memory.
0 -
Praying for both Dani and Mom!!
Much love, Robin
0 -
To all of you beautiful ladies, I feel your love and support, it means more than you can imagine. I hear each one your good vibes. The kids were with us till last night, that part worked out, they came thursday nt, so she could just leave really early, of course the procedure was moved twice due to other emergencies, she got home late Friday, then the kids went back last nt.
Yes, this has been a crazy few months, year?? ….it's just been. Yes, D had rads last week then she took off on Friday for the Y90, IR comes out to tell us that he hopes the thing that they have for the artery will hold because she has no fat, im thinking ru kidding me?? Hmm like this just sprung on you? But it did hold. The last 2 days were miserable, she could not hold a/t down, and was extremely weak. And I just really hope she stays hydrated, one of the reasons, is that a clot should not form.
Today her hubby had to go with her for Rads tx and BT, she NEVER had s/o go along to help her out, that was not very pretty. We were told Y90 causes gr8 fatigue, but with the rads to many parts of the skull, the Dura, orbital, mandibular the C area, they felt it was too important to wait on, we are not even sure, which came first the egg or the chicken in getting her so weak. (Y90 or rads)
Be it as it may, just hoping we get through this, then she gets a break, then only would they start the rads to the rest of the body. RO thought would be too much to do it all at once, so she will give her a break then do the body. And Y90 they want to do again the whole process in 4 weeks time for the left lobe. They said one lobe has to be available to take the load off while the other is going through this invasion.
0 -
Z trying to take in all that you wrote. Oh sleep, a good night sleep, awesome. Gosh you sound so smart. are we talking QOL or mean time to progression or overall survival -exactly, this thing sounds really like a crap shoot. Dani is having a BT today, we'll know maybe tom or in 2 days if any of the TM's moved. NOT that it was so accurate, but…And Z a special thanks to you for always helping me in my pm's !! You are doing an amazing job with your kids!
Babs thanks for sending the message out. Hope you will do ok with your Rads. Thanks so much for being there.
Wendy so so sorry for this, but you felt it in your gut that's for sure. Which chemo is next now? SO sorry for your shock, you are doing all you can that's for sure.
Lynne as usual you put it so well and with so much warmth. This is a monster and it does not make any sense.
Jeenee what's the deal with ESSR and Pembro, because Dani also has the ESSR mutation, the eribulin was a bit hard for her. It's so different those 2 no? What's the deal with one of the other for the ESSR? And yes they say that nowadays is good to have Faslodex or something like that with another agent.
Also, re the biopsy, Dani had it, was not a big deal in the skim of things. Of course, some ppl are more sensitive, and hopefully you will be with a team that prepares you and explain to you what you could expect. She was up and aware during the procedure. And went home and took it easy just for that day.
Kaylynne what about immunotherapies, from what I understand the immuno stuff has taken off for TNBC – I don't know the details of what you tried already, too bad Taxol did help. Oh my Gosh your girls look exactly like you!
Kayyborg so you'd be using 2 immontherapies at the same time? You are right, Dani had Gemz/carbo was awful for her. So sorry you were a the hospital, how nice that you are feeling better.
0
