How are people with liver mets doing?
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Lita, I am so sorry to hear that. You are in my prayers.
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Lita, I am sorry to hear the news. IV chemo is no fun but is also very effective. And many IV chemos these days are quite tolerable with side effects no worse than Xeloda or other targeted therapies. Do you have any info yet on your "mutations"?
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Lita,
I'm so sorry about your news, we all fear the word "progression". I hope you have a great support team that will rally around you thru the MRI and chemo.
Keeping you in my meditations.
Kathy0 -
lalady, MO has said Taxol in w wks. Weekly infusions for 3 wks then 1 wk off.
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Hi Lita figured it was time for me to join the liver group. I have been having some pain in the area of my liver I've been on Taxol for five months now and everything was looking good. Having a few symptoms of liver damage though now blurry vision and hemorrhoids. So tomorrow I see my onc and find out how the blood was today. Should show what's going on.
We will be strong together by the way movies are my big escape as well two glorious hours.
Wendy
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Lita and Scwilly- so sorry about your progression. I really hate BC! I'm hoping whatever you're put on next kick's cancer's as-
Babs
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Add me to the progression list nobody wants to be on. My appt. is tomorrow to see what's next.
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Artist, glad to hear from you. I've been thinking of you. I hope this treatment works and you start feeling better. Take care and keep us posted.
Lita, no words to describe this. I'm keeping my fingers crossed for you. You always have so much knowledge and help everyone of us. I've been dancing with Madam X since May. I always think the dance will end, then what do I do? I asked my MO Wednesday about it. He said IV if this stops. My fingers are crossed for you. Keep us posted. Hugs to you.
Shetland, I'm so happy for your good report! Keep feeling good!
Scwilly, this monster disease seems to always slap us in the face just remind us that we are sick. I hate the roller coaster and constant worry. Keep us posted . Hugs to to you.
To everyone else 🤗
Anita
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Lita and Kaayborg - darn progression. My heart goes out to both of you and sending BIG hugs.
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Lita, I am speechless, there are no words to express my feelings right now. I am so sorry to hear that. Prayers for you as always. Hoping chemo knocks it back to the curb.
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Lita, Kaayborg and all with news of progression - I am so sorry to hear and send my love and thoughts to you all. Thanks for everyone's support - this board is where I know I can get that understanding. I have my MO appointment tomorrow so have one more day in this limbo land and then hope to be able to start what even my new treatment is asap. I'm distracting by being a little lazy and not worrying about those pesky chores. Youngest son is packing to head to college in Boston this weekend. So I'm really looking forward to some time with him, my Hubble and his brother (who is joining us) for a 5 day trip. I'm determined we will have fun and not get bogged down with this news.
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The progression club is a club I hate having company in.
kaay - damn it, you had such an awesome run on carbo/gem I'm sad it had to come to an end.
Scwilly - if the cancer is indeed just in your liver, would you be eligible for local methods? Liver in my only below the neck site but my mets have been very hard to hard to track, small and scattered instead of one or two big masses, some appearing on one CT and disappearing on the next and vice versa so I'm not a good candidate for local treatment
Lita - I only got four months on Xeloda myself. I got five months of stability of Tykerb/Herceptin before we added in X hoping it would get me dancing with NED. The side effects of X were progressively worse, from mildly annoying nausea/diarrhea, to constant at the end of my run. I'm going on taxotere/perjeta/Herceptin next week and T can't be worse than X. Also going to a precision oncology clinic in a few weeks so l will see what they say.
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There's a number of spots in my liver so, so far, my MO, doesnt think I'm suitable for local treatment. Think now may be a good time for a second opinion outside of Kaiser. Not that I am unhappy with the care I am getting but just so I can see if there is anything going on outside (Kaiser is a manged care company so everything is under one organization) and then if needed later on down the line I am set up with contacts in ano group.
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scwilly, if you are in Cali maybe think about trying to contact Ann Siberman of "But doctor I hate pink" about getting a second opinion about local treatment. I believe she had two different ones done, one worked and one didn't but I think she had them done at UCSF. Hopkins also has a dedicated liver tumor cwnter
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Kaayborg - please keep us updated as the diagnostics and treatment plans come in. I think that the treatment options for TNBC are changing, and improving, faster than other types. How did the meeting with your onc go?
>Z<
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Thanks zaroka for the advice, very useful as I didn't really have an idea where to start.
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I had an appointment for more Taxol today...oncologist said my liver numbers were perfect everything was with in normal..which is the first time in a long time...scan in 3 weeks but he was confident that the scan will show stable or better...so that makes being bald worth it!
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Ok..what is going on? Trying to catch up and now reading of all these progressions and worries of progression; Lita, Wendy, Scwilly, Kaayborg, Bad at User. Others? Please keep in contact so we can all support you guys through this nightmare.
Lita, I am not familiar with Taxol, but very familiar with Adriamycin and Cytoxan. My cancer needed an IV drug that would quickly kill the tumor cells in my lung arterioles. It is harsh for the duration of treatment as it nearly wipes out RBCs, WBCs and platelets in the process. But the good cells eventually do come back and the bad cells start to die immediately. My MO said 0 to 48 hours after AC injection.
Others can advise about Taxol.
The other positive, you meet MANY great folks in the infusion room, plus unlimited snacks. Lita, the staff will love you.
So take a deep breath and dive in..you can handle this.
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Holy Mackerel, I have been offline all week and have not caught up yet. I am so sad to read about of you who have experienced progression. You are all in my prayers, and I hope that every one of you experiences good results with your next line of treatments.
Hugs, Lynne
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Scwilly, city of hope and ucla both have excellent cancer centers for your second opinion. I always advise getting an opinion outside of managed care, if you can.
Stefanie
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Kayyborg oh sweetie, you were doing so well, WTH!! Hmm you are too busy now, let the monster move on.
Alissa happy happy dance!! Wonderful, but why so little time on Kisquali, you had much progression while on it?
Bluebird can you explain, how is Kisquali and Ibrance similar? Yes, you will see when you lower the Xeloda dosage (which they say works just as well) it's a big help of how people feel. So glad you are doing well now.
Keetmom good for you.
Sandibeach hmm the snacks!! Hope AC works real fast.
Scwilly let us know what you are starting...
Lita so so sorry, you are a heluva of a gal, let's hope they take out the big guns on this.
Lynne how is your summer coming along?
Next week Monday is the big day for Dani. Brain MRI and CT of the abdomen/chest... she still has a lot of pain in the bones so i don't expect it to be a great scan, but we could hope till Tuesday. I am concerned, that maybe she'd have to go to chemo if things did not get better, it's already all over and was very active....so would she be able to afford another trial? I guess we have to wait what else is there to do.
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My prayers are with Dani, Momall. She is such a fighter.
Thank God I've got my DD's big party to distract me for a couple of days...I don't want to start freaking out over the brain shiz, but was very dizzy today on trying to stand, and the eye stuff is still a problem, and headache still there but not ss bad as this morning.
Prayers also for those with progression.
Edited to add that I will have an MRI next Friday. At least I don't have to prep for it li,e a PET scan.
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Lita I get the eye thing it's very scary have you seen an ophthalmologist yet? I know more doctor crap but it's good to stay on top of things...says I , I haven't gone either lol. But I will😜 Just tired of bad news. Taxol will totally help you I'm sure I just got the talk today from my onc that my cancer is pretty much asleep or dead. How long who knows Taxol is not bad at all besides the hair thing. You got this for sure.
Momallthetime I will be sending Dani all the best for her scans next week always scary but she can do this and she has you by her side lucky girl.
Wendy
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Posted this for Lita on another thread. It goes for all of the ones with progression and worse issues than there were prior.
Lita - floored at the dx on your scan. There is hope and you deserve to have it. Once when my brother was having a terrible life crisis I found a sign that read, "Hope, one mile." I leave it here for you. For all of us.
Hope. Because how many times have we individually crashed then flown again. Hang in there with us, Lita.
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Momall- praying for Dani' and that her scans are better than you think. Will say a special prayer for her and all my bc sisters when I'm at the wailing wall!!!! All of us could use more prayers!!!!!
Babs
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Scwilly, Kaayborg, Lita - Checking in on you guys as you deal with progression. How are you feeling? Able to distract yourself while diagnostics and treatment planning go on? Any news on that front? Thinking of you all today. It's just another treatment, and some chance it will do a better job on your particular cancer than the last.
>Z<
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Not sure I posted here, but having brain MRI next Friday.
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Just back from my MO. I'm going on Xeloda. In fact, this was what I was going to take until my liver biopsy showed I had gone from tripe negative to stong ER+ I've always been worried that it was a mix of TN and Er+ so in some ways this means I'm now covered for both types! 😜
I am devastated that Ibrance didn't continue to work. I have a bigger feeling of vulnerability. But Im going to park all this for the weekend as we are taking my younger son to start his college life in Boston at Emerson College (he's going to study film production - how exciting!). We are meeting my older son there and will have a wonderful family weeked, which includes my husbands birthday on Sunday. Life goes on.
Big hugs and support to everyone!
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Scwilly - Ibrance has a very particular target and it is simply not going to work on those cancers that bypass the CDK 4/6 pathway. I've seen Xeloda work much more broadly. I am very excited to see that you will be trying it because I expect good results. Unfortunately, we are still finding the right treatment by trial and error. After your first great scan on Xeloda you will get your peace of mind back. Thanks for the update and have a cancer free weekend.
>Z<
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I took some time this morning to write down where things stand for me right now in response to some questions people have been asking me. It's long but, cancer stories are never simple and I haven't posted much for a while.
I got very concerned when I stopped sleeping well early in the summer. For that reason I stopped all complementary meds in May. I've added them back slowly, a couple every two weeks, to see what the effects were. Looking back, going off the supplements really made me feel worse and as I get back on them I am feeling better as the complementary protocol is re-implemented. I have added back everything except low dose naltrexone, which I think is the culprit for the sleep disturbance.
Most of my markers are fine, but my CEA in particular has trippled over the past 4 months (charts below). The jump in CEA corresponds with going off the complementary profile. The big thing I stopped taking was Livon Alpha Lipoic Acid (ALA) and Vitamin C because it is a bit of an ordeal. This is a goo that you have to take as a shot first thing in the morning 30-60 minutes before you eat breakfast in order to ensure maximum absorption. If you do it right, it should have a similar effect to doing ALA and Vitamin C IV's regularly, but for much less money. It is a pain when you are traveling with kids and trying to pretend you don't have cancer... so I stopped taking it for the past 4 months.
I have to say that after only two days back on these supplements, I feel significantly more energy. The main test will be to see if they control the rising CEA. I will test my CEA again in two weeks and if that doesn't work, I am going to do a week or two of IV treatments. Long story, but I am pretty convinced that the ALA rapidly controlled my cancer very early on.
I've been planning for a long time to go to Japan in October to a clinic that does natural killer cell therapy. It's a form of immunotherapy, IOW enhancing the immune system to find and kill cancer. So if doubling down on the complementary protocol doesn't work, the NKC therapy will likely help. I plan to do NKC whether I am progressing or not. It is a therapy that they want you to do in addition to the standard of care. It enhances and extend the efficacy of standard treatment. A lady on Inspire who is very knowledgeable about immunotherapy was kind enough to start a thread on my behalf to look at the research around this treatment. Somewhere in that thread, I describe the program I intend to follow.
I dream of getting off of hormone suppression completely. I feel like the lack of estrogen is slowly making me sicker and sicker and weaker and weaker. My ability to and interest in exercise is declining and those of you who know me will understand how alarming that is for me.
I am hopeful the immunotherapy treatment will be a step towards dropping hormone therapy, but I don't have the guts to go off of it until I understand how to diagnose whether my cancer is progressing early, with blood work, rather than scans. IMO, scans can only tell you that the horse is out of the barn. We need a more sensitive diagnostic to allow us to play with treatment options with more precision. That diagnostic tool, I believe, will be specific to the individual cancer.
Therefore a second focus for me has been is to find blood based diagnostics that works on my cancer. I've been looking into cfDNA burden. Here is a 2015 survey article that includes a section on cfDNA quantification for monitoring breast cancer. The field is advancing rapidly, but I am still unable to find a lab that will tell me the concentration of cfDNA in plasma. I had the Foundation One ACT test done. It should report that information but does not. I've been posting my adventures and mostly my mis-adventures with cfDNA testing here on this thread.
Interestingly, I may have found a biomarker that works for me in an outdated tumor marker ... CEA. It is not usually a good marker for breast cancer. It has been replaced by CA 27.29 and CA 15-3 for MBC... but it is rising in a way that looks very compelling for progression. If I can turn it around it with some tweaks to my protocol I am going to feel like I am on to something ... wish me luck. It's funny that I am excited to see an indicator for progression ... but if it turns out that I can turn this around with one of the treatment strategies I am pursuing I will have gained two very important pieces of information. If not, I'll be back here freaking out very soon.
To add to the ambiguity, there is a chance that the CEA is rising not due to cancer, but rather due to inflammation in my colon. I have parasite testing going on as well. That has been extremely complicated to execute. You would think in this day and age parasites would be well understood, but no they are not. I am hoping those results in a couple of weeks.
Scans in the next month, of course, will provide another important data point but for various reasons I think they will be clean. If the CEA is cancer progressing, it is likely very early and not visible on scans ... or that is my guess at the moment. I am hoping I can turn things around with some tweaks to my protocol before it appears in scans so I don't get thrown off letrozol and Ibrance. Insurance will require a new treatment strategy if scans show progression, but if I can find something that will keep it cornered for a bit, I'd rather stay on letrozol and Ibrance a bit longer. At the moment it is the devil that I know.
>Z<
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