Lobular Sucks!
Comments
-
KBL, just talked to my friend who is a doctor and she said Zometa (bisphosphonate) has been used for a very long time and it is safe. Also, I found this link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639520/ where bisphosphonate have some anti-cancer properties:
A potential explanation for the beneficial role of zoledronic acid should be attributed first of all to its antitumoral activity from preclinical evidence through preventing tumor cell adhesion to bone, inducing tumor cell apoptosis, inhibiting angiogenesis, and inhibiting interactions with mesenchymal stem cells. In addition, zoledronic acid has been shown, in clinical studies, to eliminate micrometastatic tumor cells from the bone marrow, which could lead to a better survival outcome.
0 -
LillyWasHere, thank you for that information. It’s always nice to know there is something tried and true. I appreciate you asking your friend. I will look at the article shortly.
0 -
Kbl, did your doctor tell you to get your teeth checked out before you take the Zometa? I dont know anything about Zometa but I was one of the rare few that got ONJ from 1 injection of Xgeva. Just wanted to tell you. Healing hugs to all.
0 -
melmcbee, I was told I shouldn’t have any work after I start the Zometa. I hadn’t been seen by the dentist since February 2019 due to being in Ibrance. My doc had prescribed me three days of amoxicillin to take the day before, day of, and day after. I then called my dentist. They didn’t have any openings before the 24th, so I was put on the cancellation list. They knew of my cancer. They called me last Monday and said they had an opening on Tuesday. Perfect timing. Started the amoxicillin and got my teeth cleaned and a full set off mouth X-rays. I hadn’t had a full mouth since 2010. I had no cavities, and they said I didn’t need any dental work. I was very happy.
Thank you for checking. It’s always nice that everyone looks out for each other. I learn so much from all you wonderful ladies.
I’m so sorry your jaw was affected. Is it still painful? I haven’t read up on it. I don’t want to scare myself.
0 -
Okay, folks, just providing an update here on my recent colonscopy/endoscopy. I have to have these done bc of findings in my younger days. I was scared sh --less that they would find something related to my metastatic lobular cancer. I had the procedures last Wednesday. Friday I called the doc's office -- no biopsy report yet. Yesterday I sent her an email. No response. FINALLY this morning I got a message from her through the patient portal that she wanted to have a Telehealth visit to discuss the biopsy report. As you can imagine, my heart was in my throat. They NEVER want to talk with you when it's good news.
Turns out it wasn't necessarily BAD news (and I haven't had my Telehealth visit with her yet -- she just sent me the pathology report) but it wasn't necessarily GOOD news either. Three things on the report: the colon had a polyp that's an adenoma (not my first and probably not my last); my stomach had a benign fundic gland polyp and something called reactive gastropathy (related to my hiatal hernia and GERD); and my esophagus has no dysplasia, but it does look like Barrett's esophagus (which can be a precursor to esophageal cancer). Anyway, NO EVIDENCE on this report of anything related to dysplasia or lobular cancer. Just one more health thing that I have to deal with (and have been dealing with since around 2006, when my first benign adenoma was found). But hey, thank God for small favors -- they didn't see anything that looked like lobular, so I'm relieved.
0 -
BevJen, Please come back and let us know what doc says about the Barrett’s esophagus. I’m sorry you have to add one more thing to your list to keep an eye on.
0 -
KBL and anyone else who is interested --
Just got off the televisit - quite short. Doc's words: nothing particularly concerning in the biopsy report.
Barrett's can be a precursor to esophageal cancer. However, it's a very low percentage -- about 1 in 1000. She said it's caused by acid reflux and GERD. Did think I was going to get off of my omeprazole, but no go -- she said that's the only way to treat it. She said it only requires monitoring, and best practices right now say another endoscopy in 3 years. Also avoid those acid-producing foods, etc.
So all in all, a pretty good report (especially bc it doesn't involved lobular cancer).
0 -
BevJen, I imagine the acid reflux and GERD are not comfortable. I hope this new diagnosisdoesn’t cause you more issues. I’m sorry you can’t get off the med. I hope it helps.
At my endoscopy, I was diagnosed with gastritis both times. I’m supposed to be following a low acid diet as well, but I can’t make myself get off the coffee and chocolate. The problem is I don’t feel the burning of acid reflux, so I keep thinking he’s wrong. I haven’t changed a thing about the way I eat. If you have some tips on what you do, that would be great.
0 -
KBL,
Yeah, I have a hiatal hernia which explains stuff coming up my tubes the wrong way. Honestly, before I went on omeprazole about 5 years ago, the GERD and acid reflux bothered me a lot. Now, not so much -- and, like you, I like my coffee, even if it's only 2 cups in the morning.
This doc (and my former gastro doc) said to elevate the head of the bed so as to help with reflux at night. I tried that 5 years ago and couldn't sleep. Not going to go out and buy one of those sleep number type beds that will do that for you bc I didn't like it when I tried to elevate the bed.
The only thing that I have changed is that I buy Rao's marinara sauce for sensitive stomachs. I also don't regularly eat very spicy things. I can't take away ALL the pleasures of life -- like chocolate!!!!
0 -
I’m so glad it’s gotten better with the medication. I have not suffered that burning sensation, so I hope I don’t get there. Coffee and chocolate. If I could live on those two, I would. Lol
Even raising my head on a pillow is uncomfortable. I don’t think I could handle an elevated bed either.
0 -
BevJen, I breathed a big sigh of relief to hear they did not find any lobular mets during your endoscopy and colonoscopy. That’s the main thing.
GERD is a family trait, and whenever my liver is enlarged I get more symptoms. I have a wedge pillow that I use in bed as needed, not all the time. It inclines me from waist up just enough to help. I try not to go overboard on acidic foods, but I’m with you guys, not going to be strict and deprive myself too much.
0 -
BevJen, that's a lot of new information to take in. Happy with you that the old lobster didn't show his ugly face anywhere!! Keep us posted.
0 -
Ah, there’s lulubee! Is the bile duct stent holding steady? Pain? Covid adds one more complication; we don’t want any emergencies. I’m still on the three-month plan. Last time it was about 14 1/2 weeks which was too long, as I got fevers before the exchange. I already have next time scheduled. Do you think diet makes a difference in how long the stent lasts or how you feel with it?
0 -
Hey Shetland! Ahoy, mate! Bile duct stent is still chugging along fine most of the time, with the occasional pain flare if I forget my brain and order fish & chips with fries... umm yeah, not smart for a stent gal, hello. I still plan to reschedule the ERCP that covid cancelled for me in March, to check out the tissue we see growing inside it on CT scans, get a fresh biopsy, and probably get it replaced. I mean, it's been 7 years. That thing's been a trouper. Big, mesh, metal.
I can't say I am always vigilant about diet-- I confess I drive through Chick-fil-A now and then and I love a good cheeseburger and fries-- but I'd say most days I eat fairly clean & healthy. I go through spates of taking enzymes with meals but then I get out of the groove and forget for weeks on end. The only thing I do every day without fail is have my coffee. Maybe that's the trick, LOL.
I did have to go teetotaler about 7 months ago so no more red wine for this gal. BOO. I very suddenly lost the ability to metabolize any amount of alcohol. I wondered if it was a biliary issue, like liver problems rearing their ugly head again, but my LFTs are totally fine. Onco says it has the earmarks of specific gene mutation that got turned on. Possibly from stress, hello? Turns out this is a THING that happens. But all of a sudden I could drink 4 oz of wine and feel totally rotten for like 10 hours. Not Worth It.
Trying to keep up with you here and there. You doing okay?
0 -
Wow, lulubee, that’s strange about the alcohol metabolism. Your body does not want it any more. I hope they can get a good biopsy for you. I wonder if they will want to replace the stent if it is still working. Might it be kind of stuck there by now?
Short answer, I am doing pretty well. I’ve been on the trial for six months now, with scans and TMs both super. Long answer, I do have a new issue. I developed hirsutism or hypertrichosis, so I weaned off the suspect budesonide (Steroid med active in the gut, taken to fight diarrhea from neratinib). By the time I got to the endocrinologist and had labs done, no excess androgens were found, but I had adrenal insufficiency. This made my fatigue even worse, so I just started low-dose hydrocortisone to help replace what my body is not making while I wait for my own adrenal glands to come back online. It’s always something. It’s pretty stupid that this new problem was not caused by the cancer or the cancer treatment, but likely by a drug for a side effect. It was not supposed to have systemic effects.
0 -
Dang, Shetland! I've had pretty bad adrenal fatigue which is probably only a shadow of the adrenal insufficiency monster you're fighting, but even that was awful enough. I don't know what you can take with your meds but you might look at the Adrenal Health capsules by Gaia. That stuff is magic crack, made me feel better practically overnight. I so wish I could feel okay about taking it now, but someone on the verzenio thread had a pharmacist who opined that ashwagandha might not be great for ER+. Who even knows if that's a real thing but it cast a cloud of doubt in my mind, you know how that goes... anyway, that kinda took one more crumb out of my cookie jar. UGH. So complicated, all this mess.
As for the stent replacement question... I think I understood that when a mesh stent gets infiltrated with tissue growth, they typically cauterize it out BUT when there's a cancer question mark that's not the plan because they need to biopsy the tissue instead of burning it away. So in that case sometimes they just insert another stent inside the old one. ??? Sounds wild but okay. Science, man, science.
0 -
Ok, that makes sense. Science!
(Darn I tried to post a picture of the bionic woman here, but apparently I am not tech-savvy enough.)
I will investigate those capsules. I keep asking The endocrinologist if there is anything I can do to help myself feel better, and if there is anything I can do to assist my adrenal glands in recovering. All the she said, basically, was optimize my diet (B12 was a little low so she prescribed a supplement). After that she just says, “You will recover but it is a slow system."
0 -
Hi, everyone. I have been thinking. In my last two CT scans they haven’t been able to really see my colon because they said in the first one I was constipated, but this second one says diffuse obstipation. That’s got me a little worried since it’s at the point where it can cause huge problems. I haven’t really read backwards to see if anyone here has had lobular spread to their colon. If so, how was it diagnosed? I did have a colonoscopy in 2019 at the time of the first endoscopy, but I don’t remember anything being wrong with the colonoscopy since that’s the endoscopy where I was diagnosed with the breast cancer in my stomach.
I also did a small bowel endoscopy then, and the only thing it listed was nonbleeding angiocentesis. Not quite sure what that is either.
I’ve been feeling bloated lately and my appetite is not as great. I wonder why. I took a laxative the other day, and it truly didn’t do much for me.
Thank you for any info you can give me.
0 -
KBL,
If it were me, I'd probably first ask my MO about it and then perhaps ask him/her about going to a gastroenterologist. I had to look up diffuse obstipation -- from what I saw, that's super duper constipation, but short of total blockage. From the quick look I did, it can definitely cause bloating. (BTW, laxatives do nothing for me, either. Strange as it sounds, when I get that way, I order an oily pizza from the closest pizza place -- usually does the trick for me.)
0 -
Thanks BevJen. I just had a colonoscopy last year, so I’m not sure if I’d be able to have another one. I have my monthly appointment onthe 19th and plan on talking with the doc. She’s aware I’ve been having issues, but this is the first time I’ve seen it described that way.
0 -
Good morning all, I hope it's OK to post here. I don't have all the info yet but I know I have ILC that was also in the enlarged node they biopsied and there are other enlarged nodes showing on my scans so I'm pretty sure I belong. I posted on the main lobular area about being new and scared, but although other people have gotten responses to similar posts, nobody is responding to me, leaving me to believe my survival prognosis may be dim even short term. It's sad and lonely, but worse when even the other cancer people won't answer, lol. I live on the Florida Panhandle, so no really good medical facilities, but we can travel if it will help. My husband's head office is not too far from Dana Farber in Boston, or I am about 7 hours from Moffitt in Tampa. It seems this requires some special knowledge and I don't even know where to look for an oncologist with that. My surgical and oncologist appts here are Thursday, but the oncologist looks young and new to the area with no reviews. I thought breast cancer was treatable even when advanced, but it seems this may be the exception. I'm also having some weird leg pain and flashes in one eye that are scaring me even further.
If anyone has any suggestions on where to look for possible treatment, or any thoughts at all about where to go from here, let me know. Even just a response/connection with someone who understands would be so helpful at this point.
TIA! Melissa
0 -
Whoa, whoa, whoa. Slow down there, BeachyGrl! You do not know what stage bc you have yet, and you cannot assume it is stage iv. And even if it turns out to be so, you cannot assume it is not treatable.
Regarding staging, so far you have had a biopsy that showed ILC, and a biopsy that showed a positive node, and suspicion that more nodes could be positive. As long as there is no distant metastasis, according to the pre-2018 staging system, depending on tumor size, this could be as low as Stage IIA; and if up to nine nodes are positive, up to IIIB. By the newer staging system, anywhere from IA to IIIA if it is typical ILC with ER+PR+Her2- and grade two. So first, you need to know the size of the tumor and what the pathology report says, to get a good guess at stage. Final staging happens after surgery.
Second, you need to find out if your leg pain and eye problem have anything to do with this ILC or not. So the oncologist should order scans (more on what scans later).
Now let's address your statement “I thought breast cancer was treatable even when advanced, but it seems this may be the exception.“ Why the exception? What do you mean by advanced? Certain kinds of lymph node involvement may be termed locally advanced, but usually advanced refers to stage iv/metastatic. As I said, we do not know your stage yet. In any case, there is no reason I can see that this cancer would not be treatable, whatever the stage.
Ok, now that I have spouted all that medical stuff, I want to stop and acknowledge how very frightening this all is. Most people here will tell you that the worst time is during this process of diagnosis, when there are so many unanswered questions. Once you have all the information and a treatment plan, it is easier to cope. This thread is in the stage iv forum, so you will probably find other forums that deal with the diagnosis process better for your needs. I'm sorry you have not yet gotten responses to your other posts; don't give up. I will bump them so more people will see them.
There is also this thread for those not diagnosed stage iv but who have concerns about it:
https://community.breastcancer.org/forum/8/topics/783594?page=165
I will also work on some recommendations for where to go for a second opinion if you want to do that and post them on your other thread.
0 -
I'm shocked that there aren't more boards dedicated to just lobular cancer.. IT is massively underfunded and understudied.. and the fact that this website doesn't have more information on just lobular tells you everything you need to know.. hope you are doing well
0 -
if you look at the stage 4 people in the various threads a huge number are lobular. I’m told I have “ garden variety” breast cancer and the treatments are no different once you are stage 4
0 -
And yet there are two trials in Europe specifically aimed at metastatic ILC. And one specifically recruiting early stage ILC patients in the United States.
0 -
SP, where is the one in US? What is called?
0 -
Here is a link to information about the PELOPS trial. They are enrolling stage I-III patients who are awaiting surgery, including an ILC cohort. They are looking at tamoxifen, letrozole, and Palbociclib and will see if results show a superior treatment for ILC.
0 -
Thanks SP. They are enrolling in the city where I live however, I already had the surgery. When do European trials end? I hope soon and come up with a treatment that lasts forever
0 -
0
-
Shetland,
Have you attended this before? I see some heavy hitters here whose names I recognize.
0
