How are people with liver mets doing?
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Scwilly congrats, that's great news!
Thank you for the encouragement, I needed that as I sit waiting to be called and find out scan results. I'm so nauseous and has me wondering if anxiety or the p. word..
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I'm in your pocket gramen. I hate that waiting. I had scan last Monday afternoon, ususally hear back by Thursday. Spent Thurs and Fri bugging for a response and had to wait out the weekend. Sending you good thoughts and imagining great results for you.
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scwilly, that's fabulous to hear! We need a good news day, like today, on this thread. Thank you for sharing.
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kadcyla still working it's magic in the liver :-) one pesky axillary lymph node lighting up (opposite side from breast cancer) but there's always something, isn't it :-)
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Photogirl, thanks for the great photos. What is it about baby birds with their mamas that makes them so cute?!
AnimalCrackers, a SERD that is a pill instead of injections is big news! If it is eventually approved, many could be spared the Faslodex shots.
Scwilly, I'm so happy to hear that your CT scan was good and that the liver discomfort did not mean progression. Gramen, congratulations on your good news, too.
To all those waiting for scans and TMs, I'm with you. In the past few days I have repeatedly been on the verge of contacting my onc to ask for CA 27.29 two weeks early. When I feel my liver, I think the drugs are not working, and why wait two more weeks? Then I convince myself that I should just wait because maybe the results will be clearer if a whole month passes between blood tests. To review, my last scan showed reduced SUV but larger lesions, and my TMs have continued to rise. My onc is willing to wait a bit longer because of the lower SUV, but if the next blood test shows them even higher, we take new action.If we are going to change treatment, I would rather do it sooner than later because I'm trying to plan my summer. And I don't want things to get out of hand. For example, I really don't want to have more Taxol at this point. It wasn't too hard, but I am afraid of neuropathy if I do more.
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Regarding Afinitor. I'm sorry, Z, I thought I was posting an accessible link. Thanks for the very interesting article. The quotes below from the article relate to my own reasoning about my own particular case. With no experience of toxicity for me, I'm willing to take the drug to maintain my QOL for a longer time, since chemo would be next for me, with likely worse QOL.
"Subsequent reports from the same study showed that everolimus resulted in a significantly prolonged time to deterioration in global quality of life (QOL) compared with placebo.[3] This was despite the higher rate of treatment discontinuation resulting from adverse effects. Moreover, QOL was preserved at various time points despite toxicity in the everolimus arm."
"There was an impressive increase in PFS, no significant deterioration in health related QOL (HRQOL) and lack of significant improvement in OS with everolimus."
I agree that we want to know more about how mTOR inhibitors drive mutations. And how does that compare to the treatments that would be used instead?
Robin, it seems to me that lost in the median numbers there must be patients like the ones you mentioned who use the drug successfully for 5 years or longer. Surely in that case one would expect improved overall survival!?
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Well, this is a bit disappointing. I was just informed that Foundation didn't have enough of my tissue sample to run the tests...so THAT was waste...and I'm NOT having another biopsy just for that. The information wasn't necessarily going to change anything today, but it may have been pertinent information for future use. Ugh, I'm so annoyed. So, now they want to send a blood sample to Gaurdant for genomics testing...consolation prize, I guess. Does anyone know anything about that, or what that will do for me?
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Noooooo! And no more tissue stored from that biopsy? I want want want that Guardant360 test. It gives a report similar to Foundation One. It tests for somatic mutations and reports on what FDA-approved therapies as well as clinical trial drugs are indicated, and also what therapies may be ineffective.
https://www.guardanthealth.com/guardant360/
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hmm.. so how is that different from Foundation? And since it's just a blood test, why aren't we all doing it?
I do not knowwhat they did with the tissue that they said was not enough. I willl find out.
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Anita, it sounds like the X is working - it is typical to have a jump in tumor markers and liver enzymes. Supposedly caused by tons of dead cancer cells circulating in your blood. For me, the flare lasted several months. Xeloda was VERY effective on my liver mets for 14 months.
Stef, it must feel demoralizing to get a biopsy that turns out to be unusable. So sorry to hear that! My MO is hesitant to do a liver biopsy until I try a treatment that doesn't work at the outset, despite my urging over the last few years. He did mention as part of his reasoning that it is hard to get a good sample. I don't know all the details but have heard promising information about the newer blood biopsies.
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Off for Port insertion and liver biopsy today..no food for me this morning..Im hungry and really thirsty...they aren't completely sedating me, wish I could eat...
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I think that we will start to see liquid biopsies being used more and more, especially in cases where it is not possible to get a good sample for a conventional biopsy. One of the trials I looked at a few months ago had them as part of the protocol, and I have heard of a large cancer center that has plans to use them regularly in the near future. From what I can tell, the Guardant report is similar to a Foundation One report. But I do not know of a liquid biopsy that will check ER and PR, which is a problem.
Biopsy tissue belongs to the patient, and is typically stored at the institution where the biopsy was done. I hope F1 could return it if it was unused.
We do spend quite a few mornings hungry, don't we, keetmom? I hope all goes quickly and smoothly for you, and you get a nice breakfast soon.
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keetmom, I hope the biopsy goes well!
I just pulled my FoundationOne report conducted a year ago and am curious about the results - I have 7 genomic alterations and 4 variants of unknown significance. I would think this is a lot of mutations but have no idea how many people usually have. Does anyone know?
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garmen: just spotted your post and I'm pleased you are happy with your scan results. Waiting is the worst.
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Done..port in, biopsy done and get to go home soon...will probably sleep off effects of drugs..had a really good bartender.
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JFL, I'm so relieved to hear that X can bump up liver enzymes at the start. My CT just got bumped up due to slightly elevated enzymes (AST 38 ALT 46 ALP 111 Bil 1.4). I don't disagree with onco in doing it now as I've read of too many cases where the liver goes downhill very fast but I'll be mad if X is failing me after less than two months.
Speaking of which, I read your posts from a few pages back and while progression is hard, 14 months is a great run. A lot of people only get a few months out of drugs. I feel confident that you will get mileage out of the next drug and hey more drugs are coming to market all the time and giving us more options.
Louis and Scwilly I am happy to hear the good news!
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Keetmom, "bartender" is hilarious. Rest well.
JFL, I will try to remember where I read about what counts as a low or high number of somatic mutations. I remember learning that the fewer mutations, the better-behaved the cancer may be. BUT a tumor with a high mutation load responds to immunotherapy better than one with a low mutation load, because the immune system recognizes its foreign-ness. My F1 report showed three known deleterious mutations, and one was germline and not strongly related to breast cancer but to other cancers. There were nine VUS. It will be interesting to see how things have changed since 2014 when I eventually get some sort of biopsy. You know that your onc can ask F1 to re-curate to check if anything has been learned about the VUS or if there are any new therapies related to the mutations they found. I haven't done this because my biopsy was too long ago, but yours is only a year old.
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Thanks ladies for the info on the flairs from Xeloda. It scared me so bad when I saw the TM GO OVER 2500! Always something. I've been freaking out and then one of the nurses told me I should not traumatized my hands and feet. I have about 500 window boxes and urns to design for my customers in the next two weeks. I guess I'll have to wear gloves. Has anyone had bad reactions from Xeloda with your hands and feet? The nurse really scared me about it. I guess I'll wait and see if I have that reaction.
Hugs to all fighting hard. You are all a lifesaver for me!
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I really wish I had some positive news to share this morning.
Last night, KD and I talked briefly about the fact that we both believe the end is getting near. She still has no appetite and continues to lose weight at a rapid pace. I believe that she is cachexic.
As all Mom's would say, she said that she was ready, but that she was just worried about "her boys". That would include our two boys and myself.
I told her that I am not ready, but that if she lived another 30 years I would still not be ready. I did get to tell her that I am way more ready than I ever dreamed I would have been just because of all the courage she has shown throughout this whole nightmare.
Unfortunately, we didn't get to talk much before her meds knocked her out. Maybe we will get to talk some more today. The problem is that I think she now also has encephalopathy and she can't think very clearly.
This disease really sucks.
Louis
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I'm keeping up with the thread but sorry if I don't address you all personally or contribute much. My first Taxol hit me quite hard in that I am sooooo tired and sleep most of the time. No other SEs to speak of really. I hope next week Taxol will be easier as they will reduce the Decadron iv from 20 mg to 10 mg and gradually stop it if all goes well. I will give myself 1 cycle (1 month) and then reevaluate.
Louis, you and your princess are in my thoughts.
Wishing us all a few smiles today.
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Louis-what a difficult post for you to write. I am thinking of you all so much.
Best, MJH
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Louis, I was sad to see your most recent post. I still hold out hope that KD rebounds, grows stronger, and has more time with you. I worry about both of you. You selflessly care for KD, and of course that is the right thing for you to do because you love her so much. I do fear that you might neglect your own health while you care for KD. Please don't let that happen. I have been in the role of caregiver as well as patient. My personal experience is that the caregiver role can be much more difficult. It is emotionally challenging to see the love of your life suffer. It is easy to forget to eat and sleep. Take care of yourself. We are here to support you. I am lifting you and KD up in prayer. May God's loving arms surround you both and give you strength and comfort.
LindaE, I am sorry that your first taxol treatment hit you so hard. I hope that you rebound quickly and that your next Taxol treatments are easier for you. As always, you remain in my heartand prayers.
Hugs from,Lynne
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Louis - There is a time to fight and a time to let go. No one can tell either of you when to do what. Thinking of the princess today. You are wonderfully articulate about the most difficult choice we have to make.
>Z<
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I Haden to go 2 days with my uncle for the infusion and he needs blood transfusion-so it's been crazy. My dear Louis I Omdurman you- first we are right near you- God should give you the strength you need. Words cannot relate the pain you must be in. You are doing all you can -
JFL Dani had like 11 mutations almost none of them have a treatment for it- and the one that did it did not work.
Stefajoy it's really frustrating after what you went through and not have a/t to work with. Dani had Guardant also, I think they are a bit more limited than F1 they showed less mutations and I think Zar if I'm not mistaken thinks being in the blood it's not as accurate something like that.
Scwilly so glad for you.
Garment yeah glad for you.
Linda my wishes for you is that it will get easier soon.
Guys Onco emailed me finally that she's not trying to avoid me just she is still looking for answers. It doesn't make us feel much better.
She's having rads for some brain tumors that are doubling in size, crazy stuff. We'll let you know when I know something. Take good care my besties
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Louis- my heart is breaking for you. We are all here for you even if all we can do is read your posts and respond. I will hope you have the time to have many more conversations with KD.
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I've been following but not posting. Reading every word. Just wanted to add I am also praying for you Louis and your boys and your princess.
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As a fellow husband/caretaker, I too have been following. Wish you the best.
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Just got an email from Onco - Enzulatamide with Herceptin. Dani has 70% AR and they wanna target that. She will discuss in more length tomorrow. So we wait.
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Momall. Glad Dani has a path. It's such a slippery slope from treatment to treatment. Sending big hugs
Louis. My heart broke when I read your post. I do hope that you and your princess have more time. Please remember to take care of yourself- especially for your boys!
Linda I hope the Taxol gets easier for you
To all with good news/ thank god! Please celebrate
Babs
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Louis, it surely does suck. I am so sorry to read your post. My thoughts and prayers go with you and KD.
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