Lobular Sucks!
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Nina, I am very grateful that I could have complete confidence in my surgeon. There is enough to worry about. When I go into surgery (I have had seven ERCP stent procedures and now colon surgery) I am really quite calm and ready to work with everyone. I almost had to sit up and change my gown around this time because the hospital nurse told me to put it on open to the front and that was wrong! But someone said, "Don't worry, she doesn't weigh anything, we can fix it easily." Lol. When it is time for anesthesia I make a decision to voluntarily place myself in their hands, and I take a relaxing breath, close my eyes, and let go. This small act of choosing preserves some control for me and helps me cope. And I hope that going into it with my body somewhat relaxed is a help.
I think I am doing ok with the ultra low fiber diet. It is pretty limited. But I get to have potatoes, gravy, and turkey tomorrow! My iron is low so I am trying to get enough iron by eating dark meat poultry along with juice that has vitamin C. I cannot bear the sweetness of the Boost drinks, nor what I see on the label, KBL. My usual whole-grain, fruit-and-veg diet is completely upside-down. But golly, it is good not to be in pain struggling on the toilet because of blockage.
When did you have intestinal surgery, Nina? My second-opinion radiologist (lobular expert) looked at my PET-CT and CT with Contrast, and probably MRI as well, and said that for me the CT is the way to go. It showed things the best. But since it did not show everything, I am sure we will also be using tumor markers to follow as they have always been reliable for me. CA 27.29 (breast cancer), CA 19.9 (GI cancer) and now adding CA 125 (ovarian) in hopes it will help us follow the peritoneal disease. That was my idea, and apparently my onc thought it was a good one. We are hoping to have genomic sequencing results for next week's appointment. I am prepared to hear anything from targeted therapies like a PARP inhibitor and Faslodex, to a taxane. My poor onc will also have to hear my list of drug candidates and associated questions. I really do not want to take anything that will upset my GI tract, like Piqray!
I am telling myself that even though these mets may be difficult to treat, I do have a history of dramatic responses to the right med, so why not again?
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I love your attitude SP. I had the intestinal surgery (on my ilium) Dec. 2019, right before Covid descended on us. Radiology saw a thickening of the walls and the on call surgeons (it was Christmas holiday time) decided to do an exploratory laparotomy and then proceeded to take a section of my ileum and then connect the two pieces back together (I did hear this wasn't guaranteed). I remember trying to talk them out of it but they were firm in saying it had to be done. At that point I had been having unpleasant digestive problems for over a year and no one connected the dots, I had lost over 30 pounds. After recovering (yes using abdominal muscles was painful and healed slowly) I had a craving for cornflakes and milk which I had for breakfast everyday for 2 years. Now I'm back on oatmeal, banana and just stick to Almond Breeze. It wasn't until this surgery that I realized what Lobular mets were, they had always been lumped with ductal mets. Since then tumor markers have been my way of following what is going on. I only get CA153 but will ask about others. That's how I knew the old Xeloda wasn't working anymore and had to wait until we discovered peritoneal mets for the treatment change.
I am intrigued that you are doing CA19.9 and CA125 markers and your MO approves of that. Are there any studies that these markers may be good for lobular mets or is this an educated guess? I also have never had an MRI. I'm in an HMO and they are reluctant to do too many tests. I need clarification on what is the difference between a PET/CT with contrast, and a CT with contrast. This last time I insisted on having contrast. They did the normal CT first, then added the CT with contrast then did the PET, all in one lie down. For me the PET did pick up FDG in pelvic fluid and nodularity on the omentum, which is how they identified the mets. I did try the FES PET study in Southern California that KBL (I think) recommended but it didn't find lobular mets. The radiologist (Dr. Ulaner) was fabulous though and told my MO to check the pelvic fluid next, with contrast, which put me on the right track.
The good news now, although they cancelled my chemo today and reduced dosage for next infusion because my ANC was too low, my tumor markers finally fell 101 points!!! This means the taxol is working, and hopefully will be a great next drug for me. Keep healing.
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Ladies, in case you are interested: The Lobular Breast Cancer Alliance will present the educational webinar Clinical Potential of 18F-fluoroestradiol (FES) PET Imaging for Patients with Metastatic Lobular Breast Cancer on December 2, 2021.
https://lobularbreastcancer.org/event/fes-pet-imaging-webinar/
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YES! For the taxol working! Go taxol! Go Nina!
I can imagine them wheeling you off to surgery and you going, wait, what? When I described my blockage symptoms to my onc, she called the surgeon in immediately, and they both said that nothing else can happen, no treatment plan, until we deal with the blockage. I went from the exam room to the hospital. This came upon me pretty quickly, within a couple months.
We have been using CA 27.29 all along, since the mbc diagnosis (liver mets) in 2014. When I got the bile duct stricture from not-imaged ILC along with imaged liver mets progression, we added CA 19-9. My onc said that because of the location of the mets in or near the bile duct, that marker could be informative, and it was. So on the same principle, reasoning that ovarian cancer mets often go to the peritoneum, I asked about looking at CA 125. With this recent progression, CA 27.29 and CA 19.9 were rising for a few months before a scan saw anything. As usual. The narrowed place in the colon finally showed on the October CT, and only then, taking another look at the PET, did the radiologist note corresponding increased activity and make an addendum to the report. That is why my expert radiologist told me CT with Contrast should be used going forward.
On the trial I just left, they did both FDG PET-CT and CT with Contrast every 9 and then every 12 weeks. My insurance did not have to pay for them. The PET looks for metabolic activity as the cancer cells take up the radioactive glucose at a higher rate than normal cells. The CT that goes along with the PET is without contrast, so a poor-quality CT but it gives them an outline of body parts as a map to go with the metabolic activity. That is how I understand it, anyway. The CT with Contrast is like a high-quality x-ray that shows organs, tumors, etc. in detail. It is also a good way to find ascites, although apparently it did not show mine. So when Dr. Ulaner advised you to check for pelvic fluid "with contrast" did he mean CT with Contrast? Since the FES PET did not see your mets, could it be that they are not estrogen-driven? There is a trial looking at whether FES PET can predict whether anti-estrogen therapy will be effective. Thank you for the webinar notice, Lilly.
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thank you Lilly for the link.
I believe the anti-estrogen FES PET trial is for newly diagnosed BC, to help with initial treatment options. I was in Dr. Ulaner's FES Trial (for people already undergoing treatment, insurance doesn't cover this yet) which unfortunately did not find anything, even in the pelvic fluid. He said in his trial, the FES PET is finding things about half the time. I don't know the specifics, but I'm thinking that it works better in certain parts of the body. His radiologist "eye" told me to look into the pelvic fluid further. My PET/CT did not have contrast up to that point. I was going to get one from him but they didn't think Kaiser would reimburse them for it since I had a recent PET. I finally got my contrast along with a new PET 2 months later-at a different Kaiser that did them together. While the markers stopped going up, and thankfully started coming down, they are still above 2.000 so I try not to dwell on what that means and cheer the downward trend.
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Yes, NinaCA, I was the one who had the FES PET. I was only disappointed in it that it couldn’t tell me what I really wanted to know, which is whether the mets were in my peritoneum.
ShetlandPony, I agree, Boost is pretty nasty tasting. I’m so glad you’re not feeling blocked any longer. I can’t even imagine that feeling. I have a hard enough time going on a normal basis.
I also count on my tumor markers. I like what I’m seeing on Xeloda, and I’m also getting Faslodex, so I don’t know if it’s one or the combo that I think is working. I told my husband that I don’t really get hungry, but when I eat, I’m definitely able to eat more and have gained four pounds back.
Thank you,LillyIsHere for the link.
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I'm not sure where to post my updates. It used to be liver mets thread, but they are quiet now. I'm gonna cross post some of this to the anger thread.
So you know that I previously had only liver mets. I got taken off the trial after 1 1/2 years due to progression in the form of mets to colon and peritoneum. That I had colon surgery earlier this month to remove a blockage caused by a tumor. Yesterday on my way home from the cancer center -- good report from surgeon, blood draw -- I developed shaking chills and high fever. So I had to go back, do all the standard tests of chest x-ray, blood from arm, blood from port, urinalysis, swab nose for covid and flu etc. Got admitted to the hospital for IV antibiotics. NOT HAPPY. I just found out that they found gram negative bacteria in my port. Depending on the specific organism, I may or may not be able to keep my port. I do not need more surgery! I do not need painful IVs and blood draws in my future! I do not need any more delays on starting a new treatment plan! This is how things go wrong. What if the cancer gets away from us? I was supposed to see my onc today, but I am not allowed to go as an inpatient, rolling my IV pole. But she will stop by and see me this afternoon. I don't think the genomics is back because it took them forever to start the sequencing. I'm just wailing here. Ok good things: This hospital room is bigger and quieter than the last one. I have a nice view out my window. I feel ok physically.
Thanks for listening.
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Shetland- I am so sorry to read all this. You have had it rough. I hear removing the Port is pretty easy. I have a Port, but have not needed to remove it yet. Hoping they can get the infection cleared up soon. Then on to a new Port and your new treatment plan. Keep us informed of the genomic testing and the plan for what comes next.
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Hugs SP. It seems that this is a big bump on your road and I hope the antibiotics will take care of the bacteria. I went through heavy antibiotics after my second surgery as well and I remember how frustrated I was. My relative who is a doctor in another part of the World told me that the benefits of antibiotics after surgery are not only to cure the bacteria that caused me fever but will help heal the surgery faster (in case there are some bacteria lurking in there as well). I think he was right and I hope this antibiotic will help you as well. Extra hugs for faster recovery. I also wonder what the proposed systematic treatments are going to be suggested.
p.s. I am sorry for writing here since it is for Stage IV only but this lobular crap hits all of us one way or another.
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ShetlandPony, shoot, I know you wanted to make your appointment. I’m glad they at least found an answer for why the fever. I hate the not knowing of why something is happening. Is there any way they could put a new port? I don’t have one, so I don’t know how they work. I’m glad your room is better, but I hope you get out quickly. Hugs
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Shetland-I spoke to someone in one of my groups who recently was hospitalized with chills and fever, she went through all sorts of tests and they decided it was the port. They took it out and she recovered easily. She has a new one now, slightly below the original one. She had recently been in the hospital for other things so I guess she had a lower immune system. Hope you are doing better. I'm curious what genomic test they are doing. I was not impressed with mine. Hugs
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I am home! The bacterium turns out not to be one that likes to stick to ports so it looks like I will be able to keep mine if the new, more targeted antibiotic works well. I have to do IV antibiotics at home for two weeks.
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ShetlandPony, I’m so glad you’re home. I hope the antibiotics work and you won’t have that issue any longer. It’s so frustrating when we don’t know why something is happening. Thank you for the update
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Shetland- Glad you are home. There is no place like home. Rest and recover now.
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SP- so glad that you are home- hospitals even with windows and views are not restful. I hope that your bed at home is a wonderful nest of comfort so that you can gain strength. Have you found some really nourishing calories to indulge in? whole yogurt? protein smoothie, something that is very enticing.
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SP how are you doing? Are you feeling better? Any news on the new treatment?
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Thanks for asking, guys. I guess I'm ok. I just sit around and try to come up with easy food I can eat. Feeling the pressure to gain weight, to exercise, to get a little something accomplished. But everything seems like too much trouble. I can't do anything I enjoy, really. I have nothing to look forward to.
Waiting for second-try genomics because first one had insufficient tissue. Now my onc is saying the doctors in the meeting thought I should try Keytruda because of high TMB on 2019 test. But I have reservations, including the evidence that a healthy gut microbiome is important for success with Keytruda, and mine must be in abysmal shape right now. Just when I should be researching like mad I only want to go to bed.
Sorry, that's how I feel this week.
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ShetlandPony, I’m so sorry you’re struggling. I think if you feel what you want to do is be in bed, that’s what you should do. You’ve had a lot happening, and your body is probably needing the rest to regain strength. I know what the struggles to eat feel like on a different level because when things are progressing, I can’t eat and lose weight pretty quickly. I hope your surgery that you had heals so that you can start eating better again. Give yourself time. I hate the pressure we feel that we must be productive. Huge hugs
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SP, it is less than a month since you had surgery. Surgeons tell us that we need 8 weeks to recover after major surgery. You have gone through so much.
Do you take probiotics? Or yogurt to restore your gut microbiome?
Sending you hugs.
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Shetland- I am sorry you are struggling so. You have been thru so much. Hugs to you, my friend.
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Lobular truly truly sucks. First it blocked my colon (fixed for now), and now suddenly my stomach and my ureter. Doctors are proposing trying a stent or tube for the ureter, and a nasogastric tube as an alternative to regular vomiting because my stomach is affected. My head is spinning. I need my onc to talk to me about the big picture. Can I do some very unpleasant things and buy myself a chance at another year or two? Could systemic therapy save the day? Or would I just be spending my last few months suffering for nothing? I am sitting here in the hospital.
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Oh Shetland. Oh my. You do need to talk to your onc. When is he/she available? Tomorrow-- Monday? You have had so much lately. I agree that the stent/tube for the ureter, and especially the nasogastric tube, sounds rough. And how long are they considering these for? Does your onc think you need them just for a time to help, and that the systemic treatment can get things under better control? Or are these a more "permanent" option? Tell the docs there in the hospital that you really need your onc's input on this. My prayers to you.
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I really do need to talk big picture with my onc. The hospital doc explained that I can't have systemic treatment without improving my kidney function, so I will be scheduled for possible stent tomorrow but should be able to talk to my onc before it its time to actually roll me away for the procedure.
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ShetlandPony, are they saying the cancer has spread to your stomach? That’s where mine has been. I have not vomited as of yet but plenty of nausea along the way. They also thought I had bilateral hydronephrosis, but a test said no. Then when I had my last CT scan, they said I had bilateral hydronephrosis that was stable. WTF? I’ve just ignored what they’ve said because I have no symptoms, and I feel better since starting Xeloda. I’m worried about you and hope you can get some relief. I’m so sorry.
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SP-Healing, helping thoughts as you take the next step that is being "thrust", without much notice, upon you (ureter stent). I'm having some digestive issues and of course I go right to possible cancer spread. Not sure what symptoms to expect in the peritoneum, could land anywhere I guess. SP I know you will do WELL with the plan to improve kidney function!!
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SP- this is a crummy deal! I am thinking of you and hope that the kidneys return to good function so that you can try a new systemic treatment.
I think whipping cream would help (JK)
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Sending hugs and thinking of you SP. I hope you are meeting with your MO today and she has a good plan for you. They should know what to do. I bet this is not the first time or the last they have seen these cases. Hugs.
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Thinking of you SP! Hate this path for you so much. Time to lasso the Onc and get some answers. I hope there’s a way to alleviate your discomfort and the depression that seems to come with pain. Hopefully there’s some systemic therapy that your body could handle for at least a short time to wipe out the intruders.
Let us know if there are photos, or quotes, or anything we can send to cheer you…nothing about “journeys” of “awareness” of course. Just wish we could send real hugs and hot chocolate that would have a happy trail through the middle.
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SP - I am so sorry you’re going through this! You’ve had so much on your plate lately. I hope they can bolster your kidney function to start your systemic treatment. It’s time to have a long discussion with your onc. Wishing you pain relief and answers while I send calming thoughts your way.
And just to kick it one more time, lobular sucks!
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ShetlandPony, I’m thinking of you and hoping you can get some clarity from your onc soon. ((Hugs))
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