How are people with liver mets doing?
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The end is near…
Dear friends, it is with the utmost sadness that I write this. I went for my brain MRI today, and I received the results a couple of hours later. It's way worse than I could have ever imagined. The dr is amazed that I'm still standing…I have MORE than 20 brain tumors and I also have meningeal activity in the lining of the brain, which is very hard to treat. I have elected not to have "whole brain radiation" because it would turn me into a zombie/vegetable (given the LARGE amount of tumors I have), and I would no longer be me…just a body lying in a bed, waiting to die. I have elected "hospice care" and will be signing up for it on Tuesday, after the holiday. In the meantime, I will try to finish my third novel in the Bullmina Bulldog trilogy. The dr says I have only weeks, maybe a couple of months left. I am losing vision in my left eye, and the headaches and dizziness are considerably worse. I have been given a Rx for steroids to help with some of the pain and brain swelling. If you wish to come and see me b4 I start losing cognitive function, I suggest you do it now. Keep in mind, I am very fatigued and can only handle short visits.
Blessings to you all, Lita
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Lita, that must have been a surreal conversation. I hate this damn disease. Thank you for keeping us informed. I am shocked and saddened and am praying for you. Your humor and wit have been refreshing around these boards. I hope that you are treated well and made comfortable in hospice. Gentle hugs.
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Lita. We're all sending you hugs as you and your family deal with this awful news. I really hate BC
Babs
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Oh Lita...how can this be! I hate it so much. Know we all surround you.
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Lita, may I wish you peace.
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Lita I am so so sorry to read this. Sending you and your family positive thoughts, love and hugs for this difficult time, we are all here for you xxx
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We won't forget you, Lita57.😰💗
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Lita, I don't know if you are a religious person, and if you are not, I'm sorry if this little prayer offends you, But it's a prayer that my mother always said when she was fighting her stomach cancer. I now find it comforting in my struggles with BC.
"Lord, help me to remember that nothing is going to happen to me today that you and I can't handle together."
Wishing you peace and comfort in the days ahead.
Diane
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Kaayborg: Rooting for great results for you on Xeloda. I stand alongside you as I had just startedXeloda on on Thursday this week. I waited from the following Friday when I got my prescription as we were taking our youngest son to college in Boston and I didn't want to be away with new side effects and I actually wanted a weekend free of the dam beast! So I know it feels to be waiting to start. I hated not to be taking it but it was the right decision. As it is - I've not noticed anything so far - but its early days.
Thanks Zarovka for your encouraging words. I love your advice and confidence you give to us all.
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Yes, Schwilly...I was just talking about you to my husband today over lunch. I went looking last night for TNBC ladies who had been on Xeloda to see how it went for them. Sadly didn't find anyone but you. So we'll be figuring this out together. You're an interesting one with two types of breast cancer. Do you even have trip-neg mets?
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Kaayborg: I don't know about the TNBC mets as the biopsy came back, surprisingly to me and my MO, with just ER+ at 90%. I've always been worried that its been a mix, so now I'm on Xeloda at least it will get all types. I was bitterly disappointed to get my last scan with progression and trying to come to terms with it. But I am now going to concentrate on Xeloda. No side effects so far, but only 3 days in. Have 5 tablets to take - twice a day. They aren't as big as the supplement I had for my arthritis in my knee, but chunky all the same. Keep in touch - we can do this!
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Thanks, Stefanie. I moved my post for Lita to her thread.
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Kaayborg, what an exhausting time of decision-making you just had. Have you spoken with the specialty pharmacy? Is your Xeloda ordered, authorized, and ready to ship on Tuesday?
Zarovka, I totally agree with what you said above: "There is strategy for lining up and getting into trials. I wish people would routinely think ahead about what trials they want to get into, what's involved. Odds are we are all going to progress but the routine is to scramble for a plan when are emotionally and physically vulnerable. We need a plan or we will miss the best options. Doctors won't plan ahead because it takes too much of their time exploring hypothetical options, so patients think they shouldn't. But they should. <end rant>" (quoting Zarovka) It is hard to get answers to "what if". Doctors only want to focus on the current step, but I like to ask about possible future paths. I am going to keep on my onc about a couple possibilities I have in mind, even though X is currently working for me.
Scwilly, good for you, taking a weekend away from cancer and cancer treatment.
Here is a question relating to TN vs ER+. Myu onc said that since the anti-estrogen treatments have now failed (tamoxifen, Ibrance + letrozole, Faslodex + Afinitor), we assume that the cancer is "no longer functionally ER positive." Is that the same as saying it is now triple negative? Maybe not since sometimes people can go back to hormonal therapy after some time on chemo? (I have not had a biopsy since 2014. We are saving it for when it will inform my treatment.)
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I am praying for everyone of you ladies and especially Lita. I pray that God's presence brings you peace and comfort.
Kaayborg - I was on Xeloda from April 2016 to June 2017. The only reason I switched to Ibrance and letrazole was due to the drug company closing deadline for offering it on a compassionate basis in Manitoba. I started at 1650 mg 2 x per day. This was too high of a dose for me and it was gradually reduced to 1150 mg 2 x per day. It is weight based but there is a woman on bc.org that is taking 500 mg 3 x per day without breaks. Not sure what thread it is on but will let you know if I see it. University of Southern California hospitals is recommending 1,000 mg 2 x per day. (flat dose without any variance for weight) They claim they get as good results as higher doses. The worst side affect I had was hand foot syndrome. (burning and pealing) The lower dose helped somewhat. I found it much more tolerable the original chemo that I had in 2008 (FEC T) My qualify of life on Xeloda was pretty ok once the dose was reduced. I got significant response from this xeloda and would potentially go back to it if needed.
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I've was impressed with the preliminary results from the phaseI/II opdiva+parp inhibitor trial that was recommended to Kaayborg. IMO immunotherapy is only going to work in double and triplet therapies. It is heartening that trials are finally moving in that direction and even more exciting that it is working ... but that opdivo+parp inhibitor trial is only TNBC. Alas, the standard thinking at the moment is that hormone receptor positive cancers are not immunogenic (susceptible to attack by the immune system), even if they are no longer responsive to hormonal treatments ?!?! and effectively TNBC (excellent point Shetland).
I don't buy that, so I poked around for opdivo trials that accept ERPR+ MBC patients .. and I found this one with locations across the US. The trial combines opdivo (a PD-1 inhibitor like keytruda) with HDAC inhibitors AND CTLA-4 inhibitors.
Entinostat, Nivolumab, and Ipilimumab in Treating Patients With Solid Tumors That Are Metastatic or Cannot Be Removed by Surgery or Locally Advanced or Metastatic HER2-Negative Breast Cancer
HDAC inhibitors "prime" the adaptive immune system to program and activate naïve T cells to target tumor antigens. They also prime the innate immune system to stimulate natural killer [NK] cell activity against tumor cells and make tumors more recognizable to the immune system by up-regulating PD-L1 and the major histocompatibility (MHC) Class I and II molecules that present tumor antigen.
CTLA-4 is a receptor that, like PD-1, downregulates the immune system, so it works like opdivo (and keytruda) but on a different target.
"Combination therapy with checkpoint blockade immunotherapy has the advantage of inducing a memory response unattainable with single-agent cytotoxic and targeted therapies" (Translation to english: you get a shot at remission.) - from The Rationale and Therapeutic Promise of Combining HDAC Inhibitors with Immune Checkpoint Inhibitors.
I've lost track of who all is looking for their next treatment but here is one to ask about. For those of you in California, one of the trial locations is City of Hope. I'd be really interested in getting the skinny on what kind of response rates they are getting for this combination. Anyone know Dr. George Somio and COH?
>Z<
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Hi All -
My wife is experiencing fever since Wednesday afternoon. She does not have any infection (WBC count is good) but fever has been spiking up to 101 - 102 degrees before Tylenol is bringing it down. She also has been experiencing chills and body ache. She took her last dose of Tylenol at around 12 midnight last night which again brought the temperature down. Since this morning, her chills are gone and no more hot flushes but very week on her feet (still can walk). Temperature has been mostly below 99 till afternoon but then slowly claimed to 100.4 - 100.7 by evening and stayed there. Chills are gone and she is not feeling too sick (except weakness).
Anyone experienced something similar ? I am worried if this is a viral fever or cancer related.
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Z, I remember seeing a trial that accepted both triple negative and heavily pre-treated ER+. If more trials will do this, there will be more options.
LMWL, my cancer center would make me come in to be evaluated with a fever like that. Is there an after-hours number to call at your wife's cancer center?
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ShetlandPony - We visited the MO last Thursday when she already had fever. The MO did not think it was infection related since her WBC is within normal range. They advised her to just wait it out and get checked if fever is not gone by Monday, I am still worried. Her liver mets progressed recently but only slightly. Not sure what is causing this. I think I will call them by tomorrow.
Z - I think the hardest part is getting a straight answer from the trial coordinators about the success rate of a trial. Conventional theory is that ER+ does not benefit from immune therapy. So if COH is conducting immune trials thats interesting. Not sure what is motivating them to do so. Sometimes it is drug companies that want to grab as much market as possible by trying out different edge cases.
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If you are worried, best to call again, I think. Better safe than sorry, and worrying any longer is hard on you.
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LMWL, I agree. Better to be safe than sorry. She could have a mild infection in the urinary tract. Sometimes you don't feel symptoms.
She has spent too many days fighting what ever it is. It doesn't seem to want to go away.
Don't want to scare you, but BC patients can go septic at the drop of a hat. Kandy and a few others can attest to that. I don't like the fact that she's weak.
Has she been around any ill people? Hard question because they say you are the most contagious before you even manifest symptoms.
Let us know how she's doing.
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Here are some notes from an article about fever that is caused by cancer ... and here is the full article.
Cancer can cause fever. Indeed, fever from underlying malignancy accounts for up to 25% of cases of fever of underdetermined origin. Generally fever is associated with lymphoma (cancer of the lymph nodes) but any solid tumor can also cause cancer.
"The pathophysiology of tumor-induced fever may be due to several mechanisms (Table 1) which include...
- release of cytokines from tumor cells or infiltrating mononuclear cells (e.g., tumor necrosis factor and interleukin-1);
- necrosis of tumoral tissue;
- or obstruction of a hollow duct or viscus resulting in proximal infection
Other causes of fever in the cancer patient include drug fever (e.g., antibiotics, chemotherapy drugs); thrombotic thrombocytopenic purpura (TTP; which may result from chemotherapy or the tumor itself); and deep venous thrombosis/Trousseau's syndrome."
The first cause of fever in the list is when your body suddenly decides to attack the tumors (like it should have done a long time ago!). Fever related to progression seems to be associated with infection (new tumors obstruct some important plumbing) but they are not finding infection. If the article is to be believed, in the absence of infection, it's not likely progression. I'll let you chase down necrosis of tumoral tissue ...
It seems you can also have a fever reaction to certain medications ... is that a known side effect of your current protocol, by any chance?
If you are worried when you wake up in the morning, consider heading over to the ER tomorrow and ask a generalist to look for infection ... again. Just to be sure. Primary care physicians can be better at finding simple things like infections. That is the really bad thing that would require urgent attention. And if they rule that out, the other issues (allergies to medication, immune system attacking cancer) are questions for your oncologist that probably can wait until Tuesday. I'd be interested in a workup of her immune system, that's what my complementary onc would order.
I have now met two people who went into remission after serious bout of fever. I am so sorry that your wife is shaky and weak this weekend, but praying that the underlying cause is good.
And regarding drug companies and their desire to increase the number of indications their drug can be prescribed for ... yeah. I felt that way about the keytruda/ibrance trial at the COH. But the synergies between HDAC inhibitors and immunotherapy are better supported. And generally MBC is not considered immunogenic, but why? Cytotoxic drugs can increase the immunogenicity of cancer and make them visible to the immune system. I do think we will find some combination of drugs, probably 3-4, that work.
>Z<
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Thanks all for your advices at this late hour. I am definitely gonna call the doctors office tomorrow for advice if she does not improve. However she was worse off yesterday than she has been today - so hoping / praying things will improve.
She just had a PET scan a few days back and nothing showed up as obstructing anything. The two liver lesions she had are larger (hence progression) but not a lot larger. If it is immune system attacking cancer, then I can't hope for anything better. She has been on Xeloda until recently but not for the last 2 weeks. So not sure whether to blame medications.
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Z - agree with your comment on immunotherapy for ER+ MBC. The question always is that can we afford to waste a few months in trials that are less likely to work (based on opinions I have heard from a number of oncologists) and risk progression ? If only the trial centers had been more open about their stats on different types of cancer the choice would have been much easier.
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LMWL - The opdivo+parp inhibitor trial for TNBC had a 85% disease control rate in a heavily treated population in Phase I trials. so anyone with TNBC should be looking at that. The results for the opdiva+HDAC inhibitor+CTL-4 inhibitor phase I trial are not out, but the trial is for ERPR+ and worth keeping an eye on. My poiint is that sometimes the results are known and they are good.
TNBC has been shown to be more immunogenic, and therefore responsive to immunotherapy treatments, but I believe part of it is the population they choose to put into trials. Late stage patients with advanced tumors are less likely to respond because established tumors create a mico-environment the immune system can't penetrate. It seems to me that we'll do a lot better on immunotherapy when our cancer is on the retreat but it is currently mostly a late stage hail mary.
On another note I want to repost a trial that Cure-ious called out on the Ibrance thread which is relevant for our TNBC folks. Right now locations in Texas and Mass only but hopefully the trial is successful and more locations will sign on.
"Syros is a recent pharma startup dedicated to coming up with other CDK inhibitors (Ibrance is a CDK4 and CDK6 inhibitor, but there are 19 different CDKs in humans, and couple of these look like they might be very attractive targets for cancer therapy).
The first CDK7 inhibitor just entered clinical trials- in pre-clinical studies this CDK inhibitor works like gang-busters against triple-negative breast cancers, so could be like an Ibrance-type of drug that is specific for TNBCs. (https://ir.syros.com/press-releases/detail/42/syro..."
A Phase 1 Study of SY-1365 in Adult Patients With Advanced Solid Tumors
Syros has a CDK12 inhibitor in the works that should work on all MBC, but it's not in trials yet.
>Z<
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Z you always amaze me with your knowledge! We're all so lucky to have you on this thread to guide and advise us.
Babs
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- For real Z! I am taking notes and will be watching SY1365 as a possible option down the line.
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Kaayborg - there really is a lot of progress on TNBC. I am a lot more frustrated with ERPR+. If abemaciclib gives me a good option to pair with faslodex should I progress, I won't complain.
>Z<
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z!!! Huge thanks!
And I don't post here often, but do read every word. I'm cheering for you kaayborg and all others with big decisions. One strong network here and I am grateful
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Curious posted on my thread about Abemaciclib trials...I'm definitely gonna ask my RO about it.
I'm thinking of switching MOs because mine is just "phoning it in half the time" and I feel I need someone who's more up to speed on trials to help me.
I don't want to be kicked to the curb and just left to die. It's too soon. I only finished my first line Tx and now I have even more bone mets and new brain mets.
Hope we can ALL find a new Tx that works!
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