Lobular Sucks!
Comments
-
For those of you who have lobular cancer, and who have an ERBB2 mutation, you may be interested in two short pieces that appeared last week and this week in "Practice Today."
Last week's article talked about the use of neratinib and fulvestrant, even for those who have used fulvestrant before. The combination has shown some success, particularly in those with lobular cancer. The full article is behind a pay wall, but you can get the sense of what's going on by reading the abstract at:
https://clincancerres.aacrjournals.org/content/early/2022/01/18/1078-0432.CCR-21-3418
In this week's "Practice Today," there was an article about use of chemotherapy and ERBB2 blockade, and it had this to say:
"This population of patients may potentially derive benefit from a tailored escalation of frontline treatment with novel anti-ERBB2 drugs, such as trastuzumab deruxtecan, tucatinib, or margetuximab. Additional recent therapeutic and diagnostic advancements could further aid in the path toward a cure for ERBB2-positive MBC." Again, it's behind a paywall, but the abstract can be found here:
https://www.practiceupdate.com/c/130800/67/13/?els...
This second one did not particularly identify lobular cancers, but to my knowledge, the ERBB2 mutations are more likely to occur with lobular breast cancers.
FYI, I have just switched from a combination of neratinib and xeloda to neratinib and fulvestrant (see first link above). Happy to report back how that goes. I have two ERBB2 mutations and lobular cancer.
0 -
Thank you, BevJen. I do not have the mutation, but this will be very helpful for those who do. Wishing you great success with the new combination. Looking forward to your report back.
0 -
BevJen- do him know she he your ERBB2 mutation showed up? Original tumor or after progression. Very exciting news about the drug
0 -
My ERBB2 mutations turned up on genomic testing -- first Foundation One. These were not original tumor mutations to my knowledge.
0 -
Same here.
0 -
Hi to you all and thank you for so much information. I have had metastatic lobular carcinoma for 5 and a half years and although mets to my stomach were seen during ovary removal surgery years ago there has never been a scan that picks it up. When I had an endoscopy done the GI doc said the lower part of my esophagus looked "weird" in 2018 but the biopsy came back normal. Well, I just had a Whole Body Diffusion MRI done at a company called PreNuvo and although we haven't been able to see the images for ourselves yet the 13 page report was the most comprehensive radiology report I have ever seen and low and behold it showed a thickening in the esophagus and unfortunately in the colon as well and it showed trace amounts of free fluid in the pelvis. My CT a few months ago didn't see any of that. This diffusion MRI is done at large hospitals if you request it and I am hoping it gains popularity because it does not require any contrast dye and has no radiation.
The company PreNuvo is opening 20 new locations in the next 2 years but right now it is only available in a few. I went to the San Francisco Bay area location. A whole body scan was $2,000 with the discount they gave me and you can submit the bill to your insurance. I am not going to bother, but I am going to have the torso scan done in 3 months for $1,000 to see if the free fluid and thickenings are increasing while I wait months for an appointment with my GI doc.
Anyway, I wanted to share that as a possible scan method. Both UCSF and Stanford said they would do it, but it was just easier to go to the company specializing in it for me.
Bless you all, Carrie
0 -
WOW Viking Warrior- this is interesting and disturbing as well. Have you been symptomatic? Did you do this new MRI because of your history of surgeons seeing weird cells even though your biopsies were negative? How is the diffusion MRI done if not with contrast?
Please come back and let us know how this will be treated as well. Are you still on Ibrance? Will you be changing treatment? I wonder how much GI docs know about ILC mets?
0 -
Nkb, I have lots and lots of bone mets and I had lots of abdominal pain for the 2 years leading up to my initial breast cancer diagnosis which was delayed due to normal mammograms, same old story. Within two weeks of starting endocrine therapy my abdominal pain disappeared so I never doubted I had abdominal mets somewhere! But we have never had real proof. I did over 4 years on Ibrance and then my neutrophils just became too hard to manage and I switched to Verzenio in October. I am willing to get testing done over the next 3 months and see if we can figure out if the Verzenio is really working or not. I had a Guardant 360 liquid biopsy 2 weeks ago and I had no pathogenic mutations. Tomorrow I get my CellSearch CTC results, (circulating tumor cells) and that will give us info. I am not giving up the Verzenio unless I know it isn't working. I feel way better on it than I did on Ibrance so I am hoping that is a good sign, but could just be wishful thinking!!! I'll keep you posted.
The Diffusion Weighted MRI analyzes the movement of the water molecules in the body and therefore doesn't need contrast. Diffusion sequences are used in brain MRIs so it isn't actually new technology, just new to doing the whole body.
Take care, Carrie
0 -
Thanks for posting this Carrie. I’ll ask my MO if this is available here. I’m not a fan of getting contrast
0 -
Cyathea,
I'll be curious if your MO knows about it. Mine had never heard about it and I am very proactive so I called UCSF and Stanford and several local radiology depts to find who does it. The company I went to called PreNuvo does not have an east coast site yet, but if you go to their website and go under Patients FAQs and scroll to the very bottom click on locations you will see where they are putting in some very soon and there will be more coming. Best of luck, Carrie
0 -
Thank you for the info, VikingWarrior. I am very interested, as it would cut out having to get so many MRIs each time. They plan to expand to Florida this year. I’ve put in my info to be notified.
0 -
Carrie, my MO is also looking into PAT or PACT imaging. I heard about this from a TED talk from Lei Li. Photoacoustic tomographyis being studied at CalTech and Wash U. I don’t think those are widely available yet, but it also works without contrast.
0 -
Cyathea,
New imaging ideas! oh, thank you for that exciting information. Your onc sounds very well informed. I will definitely be looking it up but if you get any more info please keep us posted. Not being able to image my lobular mets has created so much stress for me. And no contrast is such a bonus.
Thank you, Carrie
0 -
ShetlandPony, how are you doing?
Ladies, I want to ask your knowledge and opinion if Aromasin/exemestane works on ILC cases.
0 -
Yes, I hope ShetlandPony is doing okay.
LillyIsHere, I’m sorry, I don’t have knowledge of this treatment. Hopefully someone who dies will come along.
0 -
lillyishere -- from what I've read, letrozole is the preferred AI for lobular. I think you will find that people are on some of the others, but that's my understanding. As kbl says, perhaps someone else will have better or evidence based info.
0 -
bevjen, you are right, my MO told me the same and I keep reading that letrozole is superior. For 2 years I took it, it was making sicker by the day. I hope someone else has some knowledge about aromsin/exemestane and ILC.
Looking forward to hear from SP.
0 -
A message from Shetland pony that she asked me to post--
Thank you for asking about me. I have been trying to log in ever since the "roll out" and the site does not let me log in. I am not in great shape, but I am still here. This is terrible timing because I need you guys right now. --ShetlandPony
0 -
Happy International Women's Day! Sending hugs to you SP.
0 -
BevJen, I'm so glad she was able to let you know. I'm really sad she can't log in. Please let her know I am sending her a big hug and hope she can start to feel better.
0 -
Has anyone on here ever gotten a CT scan report that said something like "cannot rule out the presence of peritoneal carcinamatosis"? That was on my January CT scan, and it was the first time something like that showed up. I know that lobular can go to the peritoneum but I also know that it's rare. In a rather annoying development, which leaves me worried, I just had a CT on April 6. On that report, the radiologist (a different one) seemed to be operating from the perspective that peritoneal carcinamatosis was present -- but there's been no connecting of the dots here, and my MO has not mentioned it at all. Additionally, on the April 6 report, the radiologist reports that everything is stable BUT FOR a new 5 mm peritoneal nodule. I have a message in to my MO, but again, I'm not sure that the dots have been connected here and it's almost impossible in my hospital system to get ahold of the radiologists to discuss their findings. I'm hoping that my MO will track him down for more info.
0 -
BevJen, I have not had peritoneal mets, but I’m surprised your doc didn’t bring it up. I would definitely get to the bottom of it and have more testing if necessary, possibly an MRI of your abdomen.
0 -
KBL,
Thanks for responding.
Interestingly, after I posted that, I emailed my MO. She said that this was a very small change from my last CT and for now, we aren't going to worry about it. I don't think they've definitely decided that it's peritoneal mets -- I think the radiologist who read the latest CT was playing off of the last radiologist's reading of my January CT, which had a lot of extraneous info in it that caused me to schedule an appointment with the liver specialist.
Anyway, bottom line for now is no treatment change.
Also not sure that I can have MRIs anymore. I have a ton of titanium in my system now with my hip replacement and pin on the other side. I've been told that there are newer MRI machines that would still allow me to scan, but I'm going to take the "win" here from my MO and enjoy a little bit of time when she thinks that things are good. Plus, I'm headed to MSK next week to see a specialist in my types of mutations in my cancer (two different Erbb2 mutations) to see what she thinks about subsequent treatments.
0 -
BevJen, I’m glad you don’t have to go through a treatment change. I do think radiologists read off what others say. I’ve had that happen as well. Not changing treatment is a win. I’m glad for you.
0 -
Hi
I was diagnosed with LBC in 2005; treated with tamoxifen then eight years of exemestane. Had few SE and I think was clear. In UK, treatment is symptom led so had no scan. Finished in 2016, but not allowed to continue as no evidence to justify. 2021 has symptoms and diagnosed with SBC. Onc believes that exemestane put tumours into hibernation!
2 -
Meiard, I’m sorry you’ve rejoined the group. Can you let us know where they found it.
0 -
Hi kbl,
I had pain in my right abdomen; doc suspected gallbladder infection. Ultrasound showed multiple lesions, with follow up CT showing multiple bone lesions too. Local advance in chest wall too. No real symptoms until then, five years since stopping exemestane.
mar0 -
meiard, so sorry this happened to you. I’m not familiar with how things work in the UK. It’s just sad that they don’t do anything until you have symptoms. Granted, I was being told something wasn’t right for six years until I finally had a symptom and it was found in my stomach, along with all bone and bone marrow. They just thought it was multiple myeloma, and that kept coming back negative. I had the cancer but didn’t get treatment until they found it. It’s not the same as not being treated until you have symptoms, but I wish they would realize the cancer can spread many places before the symptoms start.
0 -
Responding to what bevjen asked last week, I had a radiologist refer to omental stranding which was curious. A subsequent scan report stated 'known peritoneal carcinomatosis' (when that condition had not been diagnosed).
So, as kbl says, these specialists do seem to read each other's notes instead of the patient history…
0 -
As to what vlnrph said, in my January scan I had a lot of references to pseudocirrhosis. First time I had seen that. In a fit of panic, I asked my MO what that meant and what I should do about it. That precipitated a visit to a hepatologist, who reviewed all of my scans, did a huge blood panel, did a physical exam, and told me that in her opinion, yes, my liver has scarring, but that she didn't expect anything more than that was going on. I'm glad I saw her for reassurance, but there's a day in my life that I'll never get back and a lot of worry that I didn't need.
Now I'm dealing with this peritoneal stuff. I guess that will follow me for a while. Geez.
0
