Lobular Sucks!
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KBL, that's my plan if it happens again. These symptoms are out of the ordinary for me!
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Someone here on BCO once gave me citations of scientific papers about detecting gastric and other weird ILC mets. I will look them up and post.
(ShetlandPony with liver and weird bile duct mets now presumed treated.)
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BevJen-your MO would have to decide that - I think some MOs are more conservative than others - but, if some studies showed some really good results you might find that many use it before it is approved for breast cancer. We shall see!
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JodyJ, those symptoms are very similar to mine when my gallstones “act up”. Although I may have had the stones before chemo, I never had any symptoms. After 2 cycles of TCHP, I went to the ER and found out about the gallstones from an ultrasound and CT. The CT allowed them to find my single bone mets on T11 (for which I had no symptoms). After switching to Abraxane I had only 2 minor incidents of pain and nausea with no fevers. Fortunately, it’s been 6 months since my gallbladder has given me problems, which doesn’t mean I won’t have issues with it in the future, but it makes me think that the issues may have been caused by the chemo.
I’m not a doctor so I’m not suggesting that you have the same diagnosis, just that I think the issue could be something other than mets to make you feel better.
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Cyathea, I was just finishing a reply to you and it disappeared. I hate when that happens.
Thanks for sharing your gallstone experience. How lucky that it led to discovery of your T11 met! I think my symptoms are probably the result of something other than mets, maybe adhesions from a long ago surgical procedure. But not knowing plays with my mind a bit. And it bugs me that my MO seemed not to know that mets can be picked up through endoscopy, even if rare. When I see my primary care physician one of these days, I'll get her input. For now, I'll try not to worry too much and just enjoy not having those horrible symptoms!
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This is such a great thread where we Stage iv ILC folks share our experiences. In order to collect some resources I know about and make them easy find, add to, and link to, I just created a thread called “ILC (Lobular) “Unusual” Mets Sites. This thread is included.
https://community.breastcancer.org/forum/8/topics/876844?page=1#idx_1
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SP,
You are the best! Thank you for your hard work that will benefit all of us. Hope you are feeling well.
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Thank you, Bev. I am feeling better all the time, and am really enjoying planning and planting my garden. My trial drugs are working really well: no activity on PET, shrinkage on CT, low normal CA 27.29 and CA 19.9. I have a handle on the diarrhea, and am finally gaining some weight back. After I hit 16.8 BMI, my onc told me to go shopping at my favorite grocery store despite covid-19. So I did, and in three weeks I gained four pounds. (I had only been ordering pick-up at another store that does that.) I'm in one of those phases where I sort of want to enjoy this NEAD period and not think about cancer too much, and yet do not want to abandon my peeps here. Maybe I will be on less for awhile. But anyone who wants to talk to me, please please do not hesitate to PM me even if I am not posting as much as usual.
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Lulubee, how are you doing? Is your bile duct stent ok? Are you going to do ERCP?
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Hey Shetland, thanks for checking up on me. You're a real pal.
I suspect my bile duct stent is not 100%. Did I mention that I had a CT in March that showed a mysterious shadow inside the stent? Both the radiologist and my endo speculated that it was *probably* barium that backwashed into the stent during the CT but of course they couldn't be sure it wasn't MBC recurrence in the duct. My oncologist wanted better info. So we got everything set up to have an ERCP, get tissue to biopsy, clean out and replace this 7 year old stent-- and then the governor shut down non-essential surgeries due to the Covid-19 spike.
So our next move was to repeat the scan 3 months later, which was a couple weeks ago. Not sure if the shadow was entirely gone (report was a little vague) but it was definitely much reduced. Now Covid has gone totally berserk here so it will be a while before we can do the ERCP unless I get into an emergency situation. (UGH, please Lord, no.) Meanwhile, this weekend I started having some of those old familiar pain flares in my mid-torso when I eat anything rich. So I'm probably going to do a water/juice/smoothie fast this week. Must behave. Dang it. Pass the enzymes.
How are you?
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Hey Ladies. My mets in my colon and around my ureter are growing so my oncologist says I have failed Xeloda and she wants me to get a port put in fir Abraxane. I saw Cyathea was in it and wanted to ask if anyone had been on abraxane. I am getting my Nephrostomy tube changed tuesday and going to do radiation therapy on spine as soon as its set up. Im spinning over here. I enjoyed reading all of the positive stuff here. Strength I get from you and your stories. Feeling alone and hopeless till I read this thread again. Thank you.
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melmcbee, I’m sorry you’re having a rough time. I don’t know about Abraxane, but I’m giving you a virtual hug.
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Hello to all,
Just popping in say that I'm having an MRI of my entire spine this afternoon. It wasn't ordered by my MO, but by my old radiation oncologist who I consulted to actually READ my scans (as opposed to reading the reports about them, as my MO does -- and I think a lot of them do). My reports have been referring to sclerotic mets in my spine, but I also have a good amount of degenerative disease (arthritis) in my spine, and so my RO thought that this might be a better way of seeing the spine and figuring out what is what rather than my last test, which was a nuclear bone scan. Who the heck knows? But I figure that more information is good, especially when it comes to lobular, and that the more people who have eyes on my stuff, the better. Of course, that means that I have to spend around 2 hours in the metal tube, so not crazy about that, but I'll live.
If I find out anything interesting, I'll report back. Just thought I'd toss this out there in case anyone else is floundering around looking for the best imaging test -- not sure this is it, but it's worth a try.
Also having a colonoscopy on Wednesday but that has nothing to do with my cancer -- it's my regularly scheduled time to do one (I have them every 5 years). However, since other folks over time have mentioned that lobular showed up on endoscopies and colonoscopies, I don't think it will hurt to have it since I need to anyway to watch for colon polyps.(My body loves to grow things.)
Hope everyone is doing okay.
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BevJen- What a fun way to spend a Saturday afternoon--not. Hoping all goes well and you get a good report.
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Good luck BevJen. Sending you good vibes.
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I would rather do anything, any test at all, than a colonoscopy. It’s not the procedure at all. I just had one a year ago. It’s the prep. I can’t keep that stuff down, literally. They better figure out a different prep for me if they ever want me to do one again.
I hope your MRI went well.
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Melanie,
Do I remember correctly that you were ER-positive and the cancer converted to ER-negative?
If so, you should definitely be on immunotherapy!! I will go back and dig for the link so you can show your MO, but the stats for conversion in that direction were something like 50% response to immunotherapy (very very strong response rate) compared to about 15-16% for conventional triple negative and about 4-5% for ER-positive. So make sure there is some Atezo, Keytruda or other immunotherapy included with that Nab-Paclitaxel!!
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JavaJana, that’s a process I could handle. I take Miralax anyway, so that’s no problem. I put it in plain water. If I ever have another one, they’ll have to do something like that. Never again for the citric nitrate or whatever that stuff was. Nope, nada, not happenin’.
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I have a question. Am I the only one with lobular that had all kinds of tests starting in 2013 when they saw lesions in my spine in an MRI, but it never has shown on a PET scan, a bone scan, or a CT scan? Am I the only one where my cancer was missed because they thought it was a different type of cancer, and when the bone marrow biopsy came back negative, they just left it at that? I never had further testing, even though multiple MRIs said their were lesions in my spine.
I decided to have another MRI after four years and getting the diagnosis of lobular in my stomach. The MRI said “significant progression” of the lesions. I just had a bone biopsy last week. It’s lobular breast cancer all up and down my spine, missed diagnosis since 2013.
If they didn’t see it in a scan, how did they find yours?
I can’t help but think if they had caught it back then, it may not have spread to my stomach.
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Again, popping in after having my MRI of my spine last Saturday and also having my colonoscopy/endoscopy yesterday.
Aside from how long the MRI test took, I don't think it was any more informative on my bone mets than CT scans and/or the nuclear bone scan that I had in May. Public service announcement -- don't think it's really that specifically helpful for lobular BC. I haven't talked to the ordering doc yet (it wasn't my MO) but I picked up the report. First, the report wasn't written in plain English, that's for sure. Scan was read by a neuroradiologist (I looked her up) and it was difficult to follow. However, I think but I am not positive that it didn't really tell us any more about my spine mets. As a bonus, she identified a nodule on my thyroid that I've known about since at least 2004 (I have a multi nodular goiter on my thyroid). For a few minutes, that threw me into a panic until my endocrinologist said "no news here -- same old, same old."
Had the endoscopy/colonoscopy yesterday. Endoscopy was to look at my hiatal hernia and see what's going on. That test resulted, though, in biopsies of my stomach and Antrum as well as of several non-bleeding polyps that the doc said were most likely benign. Of course, that freaks me out bc lobular is so sneaky.
In the colonoscopy exam, she found a small flat polyp that she also took out. Again, freaking me out bc of how sneaky lobular can be.
Just have to wait until next week when the biopsy reports come back. I've had polyps found in my colon before (have had a number of colonoscopies since 2006) but still, I'm a little bit unnerved that she found some stuff. Always waiting for the other shoe to drop, I guess.
On the positive side, the recommendation on her report was a re-scan in 5 years, so I guess she's more optimistic than me.
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Bev, my Friend, I'm so sorry you are experiencing this extended scanxiety and biopsy wait! Hellish. Just wanted to let you know I am thinking of you.
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KBL, I hear you. “If only” can drive you crazy, so focus on what to do moving forward as much as you can. It seems to me that each ILC patient is unique when it comes to which scans show it best. When you find a modality that is informative, stick with it. An expert radiologist at the ILC symposium told me that if a type of scan has worked for you, it likely will continue to work. So it looks like MRIs are for you. For me all types have shown the tumors in breast and liver, but PET is most helpful to distinguish active from dead or dormant. Now Nothing showed any tumor in the bile duct or beside it, and the biopsies and brushings have always been negative, but my onc does not believe them.
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Melanie, it sounds like your oncologist is really on the ball. My first mbc treatment was taxol, same drug as abraxane, through a brand new port. I found if very doable and effective. I even kept up with teaching dance classes, having scheduled the weekly infusions for the day after class. Do ice your hands and feet with cold socks (NatraCure) and gloves, available from that big online store.
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Hi Ladies, I would like to ask for your advice regarding Zometa. My MO recommends me to start Zometa to protect my bones from ILC. He said it is optional. I don't know what to do. My appt. is this coming Wednesday. ILC and LCIS were accidentally found in both breasts and 2 nodes out of 5 were positive. I don't want to add SE of Zometa in my life but on the other hand, I want to protect my bones in case ILC cells are wondering and planning to land in the bones. What do you suggest?
Thank you
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Thank you, ShetlandPony. I appreciate the response. It’s just a crapshoot what works for each of us, isn’t it?
LillyWasHere, I’ll be starting Zometa on the 24th. I figure I’ll give it a try, and if the side effects are too much, my doc and I will have to figure out something else. I’d rather try it to help.
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Thank you KBL. Somewhere I read that only the next day flu like symptoms are typical SE. I am scheduled for Zometa on Aug. 19, ahead of you
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I’d love for you to keep me posted how you do, and I’ll let you know how mine goes.
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KLB, since russians found the vaccine for Convid-19, I wonder if they can come up with better alternative of Zometa LOL!
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LOL. I know there is Xgeva, but my MO said that the insurance likes to start with Zometa because it's cheaper. Isn't that nice?
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