Lobular Sucks!
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Sorry to hear about your family member Shetland. I agree that it is pretty coincidental.
My fingers are crossed for you to remain on your current meds as long as you are tolerating them and they are bashing those nasty ILC cells
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Hi Ladies, what symptoms did you have that you realized ILC went from stage 1 to stage 4? What signs to look for and if you turn back time, would it be anything different you would have done?
My MO said it spreads like mold on blue cheese. Very sneaky cancer!
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Hi Lilly
I was Stage 4 from the get go. No palpable lumps, no symptoms, no signs.
I've never had any aches or pains despite the bone mets I'm told I have. No abnormal labs (aside from CA 15-3). Nothing!
That's what makes it so surreal for me. I think there must be many women walking around totally clueless that they have this sneaky disease. Sometimes I wish I was one of them.
It is my understanding that if caught early as in your case, there is a very good prognosis. I wish that for you!
Leigh
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I had upper right quadrant pain. Do-over, I would be more aggressive and go with ovarian suppression and andaromatase inhibitor, for several reasons.
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Never had any lumps. Mine was de novo Stage IV. The only reason they found it was excessive weight loss and not being able to eat more than a few bites of food before becoming extremely full. Cancer found in two places in my stomach after endoscopy and biopsy. No primary found.
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Your life experiences should be written in a book. You Ladies are my heroes. This type of cancer is scarier than I thought since it is a sneaky one. My MO said ILC prefers the organ linings and that's why it is difficult to track it down. I am also very mad. I read, it is been over 100 years since cancer was discovered, trillions of dollars and thousands of scientists have been poured on finding a cure and we are still battling this disease and losing our lives to it. I told my DH I feel like a prisoner who is waiting for his death sentence, we all know we will die but prisoner/cancer patient particular daily life is waiting if it is going to happen today, tomorrow, in a month, in few years.
Shetland, you seem to have been doing what doctors recommend nowadays. I was suggested lumpectomy, radiation and tamoxifen but I refused them all. I went for DMX, removed ovaries and now I am in letrozole - I truly don't believe this letrozole thing does any good. I wanted radiation too but then I changed my mind since it is on my left side where heart is and I thought I will do more damage than good. Then I think of my young kids who still need me.... some as your loved ones who need you. (where are heart symbols when you need them!!)
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Letrozole is a good treatment for ILC, Lilly. Don't wait for a death sentence. Go live your life! Be in this moment, this day. I can’t find the exact quote, attributed to Michael J Fox, but it is something like this: If you live fearing the worst, and then it happens, you’ve lived it twice.
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ShetlandPon Lots of Love from me. You put a smile of my face.
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Hello to all of the ILCers!
Well, here we go again with the imaging questions. I had a CT with contrast late Nov., and an abdominal MRI in early December. Both looked great -- decline in liver mets, nothing new otherwise. TMs were trending down nicely (CA27-29 and CEA). Then, had a stomach virus in December. January TMs trending upward. Late Feb. another CT with contrast -- TMs up more -- nothing showed up on CT -- deemed "stable." Had another MRI in early March. Deemed stable. TMs late March and just last week -- going up, up up! Next scan currently set up for June, due to all of the coronavirus stuff. Set up as a CT with contrast (my interventional radiologist will also have me do an abdominal MRI at that time to look at the liver because I had a microwave ablation to my largest liver met last July.)
I just sent an email to Dr. Jankowitz at U Penn (I think I figured out their email convention). I'm hoping that I can get a "virtual" consult with her, because I think the Ibrance isn't doing anything right now, and I'd like to know her suggestions as to further treatment. I live in the DC suburbs and would gladly drive up to Penn to be seen by her on a regular basis, but that doesn't seem feasible right now.
Just venting here because I know that you lobular folks understand this.
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BevJen- I am sorry you are having concerns. I cannot really give advise. Just know that I care. My TM's rose over a period of several months in Summer 2019, but the PET in Fall 2019 showed no uptake. So MO deemed the TM's not accurate for me and that I was still stable. In fact, she changed TM checks from monthly to every other month now. Is there something brewing that scans are not seeing? I don't know. I think a consult with your doc is a good idea, but I doubt that they change treatments based on the rising TM's if the scans are ok. Keep us informed of what your MO says. It may shed light on someone else's concerns too.
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I think a consult with Dr. Jankowitz is an excellent idea. Besides being a lobular expert, she presents information in a factual, easy to understand manner. Keep us posted on how you are faring.
Hugs,
Leigh
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I sent BevJen a detailed pm, but if anyone wants my particular input on any of the issues raised, I will be happy to post a reply here.
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Shetland, I'm always looking out for YOUR particular input. Please share here!
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Lol, lulubee.
Re imaging — My trial provides for PET-CT and CT w/Contrast on the same day. (It had the option of MRI instead of CT w/Contrast. I told my onc I would take whichever she thought best, but I preferred CT.) I had the scans before starting the trial and then ten weeks later. On the CT the liver lesions are smaller. On PET there is no longer any activity (resolved). So golly, I think that PET is really useful. I would hope your onc could campaign for PET scans if your TMs and scans are contradictory, since ILC can be difficult to image. Maybe get an opinion from Dr. Ulaner to strengthen the argument. My onc said one reason she likes trials is that they watch you closely, and I understood that to include not having to fight for scans. Luckily the trial I needed was available at my cancer center.
While considering the trial, I did get neratinib approved by insurance. My onc has this magician Nurse Practitioner who knows how to get things approved. But my onc seemed enthusiastic about the trial, and I liked the idea of targeting two pathways, so I chose that route. Though single-agent neratinib can be effective, too.
Interesting bit about my TMs — All during my troubles with the common bile duct stricture, fears of bile duct cancer, and getting stents, my onc maintained that there was ILC in there even though imaging and biopsies of that area showed none. (Liver biopsy did show ILC.) We added CA 19-9 to my labs due to the location. Even though that TM is typically used for GI cancer, she said we could use it to follow breast cancer in that area. Well, now that I have had a great response to neratinib, confirmed by scans of liver, both CA 19.9 and CA 27.29 have plummeted. So that argues for my onc being correct that there was sneaky ILC in or around the bile duct.
I want to find out if the trial sponsor, Puma, plans to present a separate analysis for Lobular, and if they don’t, to convince them to do so. Since ERBB2 mutations are a thing with lobular mbc, I think they will end up with a large lobular bc cohort. (It is a basket trial of neratinib for several kinds of cancer, all harboring an ERBB2 or related mutation.) I need to contact the LBCA for help with this. The ILC Symposium in Pittsburgh has been rescheduled for fall, but we shall see.
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VERY interesting, Shetland.
My most recent CT showed something shadowy in my common bile duct stent. (It's been clean & clear since lobular mets glued it shut back in 2013, as you always remember-- and would you believe my current mesh metal stent is 7 years old?!)
My onc is of course concerned that lobular mets could be returning in the duct. But the endocrinologist who did the four procedures on the duct in 2013 looked very closely at the images and is all but certain that the shadow is a little backwash of barium contrast. The radiologist agrees that's entirely plausible. Endo said we can talk about doing an ERCP but not until June at the earliest because he can't keep me safe from Covid-19 during surgery-- you know how they have your mouth wide open the whole time with tubes and instruments so no masks, and of course they have to intubate, etc. So yeah-- no.
But my TMs have been climbing little by little for the past 5 months (been on Verzenio + Faslodex for 13 months now), so I'm probably moving on to Piqray + Fas next month regardless. Woo and indeed hoo.
All that to say, your info about the CA 19.9 is very interesting to me right this moment. Thanks for sharing.
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Not sure if anyone participate in Living with Breast Cancer virtual conference today, but I watched the keynote address, which was presented by Dr. Lisa Carey from UNC and Dr. Nik Wagle from Dana Farber. It was quite upbeat, and I found it interesting.
There was supposed to be a presentation by Dr. Rachel Jankowitz, formerly of Pitt and now at Penn, regarding lobular, but for some reason, that didn't happen (maybe institutional affiliation issues? who knows). But if you go to LBCC.org, you can access her presentation. I found it very interesting, especially when she discusses a couple of case studies where she runs through various treatment options for metastatic lobular. The disappointing part -- not her fault, obviously -- was that there were only TWO trials for metastatic lobular -- one is in the UK (ROLO) and one is in the Netherlands (GELATO). Neither is open to US citizens, and they have not yet expanded to more sites.
Anyway, I found both presentations to be very interesting and information-filled, so you should go to LBCC's website and watch if you are interested. The keynote will be up on Monday; Dr. Jankowitz's presentation is up already.
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BevJen- had Rolo or Gelato started yet? I heard that they were still enrolling. I am glad that it was upbeat- I will go listen to it
thanks
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Nkb,
ROLO, to my knowledge, is in Phase II. GELATO is recruiting, but they are also going on, I believe -- think that one started in 2017. Neither has completed yet.
I just wish they would come to the US!
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I heard that you can be in ROLO if you go to London and be in GELATO if you speak Dutch.
I am glad that they are in phase 2 Crizotinib is approved for lung cancer in this country so if they found some good results we could use it here at any time- I think that UCSF may be looking into crizotinib for breast cancer - they are familiar with the drug and did do some consulting on ROLO.
Fingers crossed. most MOs still seem to think that there is no difference in treatment for ILC vs other cancers especially in the metastatic setting.
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Nkb,
I wrote to both the ROLO people and the GELATO people about a year ago, and I think that one of them told me that you had to be an EU citizen. I know of at least one other BCO poster who even tried to get into one of them (I think GELATO) by staying in the country, but I think you're right -- I think the not speaking Dutch was the problem. Hey, I'd go to London and stay if I figure out how to afford that!
That's fascinating that UCSF is looking into crizotinib. Please keep us informed if you hear anything further on that. It's important that we keep an eye on these lobular-specific trials. I think you are correct that most MOs don't differentiate between lobular and ductal, but then again, most MOs really don't know much about lobular. I thought it was especially important that someone like Dr. Jankowitz, who does know more about lobular and has studied it more, thinks that it should be studied as a separate disease.
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BevJen- when I brought up the two trials the second opinion MO didn’t know anything- but, then I mentioned crizotinib and she perked up and told me the head of oncology was interested in that drug and consulted with the London study.
I don’t get my care there - just the second opinion.
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I am totally doing the ROLO protocol at some point, even if I have to get it on compassionate care. But maybe in the not-too-distant future It will be available to us in the USA? If the trial shows safety and efficacy, and crizotinib gets approved for breast cancer in the EU, what will that mean to the FDA? Could they fast-track it since it is already an approved drug for other cancers?
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SP- since it is already an approved drug it can be used “off label “ even if not approved specifically for breast cancer.
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Nkb,
But the question is: how would one get an MO to use it for breast cancer? I know that my MO, for example, would simply say: there's no research to back that up.
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ShetlandPony, do you have info on the ILC conference in Pittsburgh in the Fall? I missed the LBBC virtual event, but I was able to register after the fact and see some of the sessions where video was available
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In the past week, I've had 3 episodes of severe upper abdominal cramps, nausea, and slightly elevated temperature. Two of these episodes lasted 8 or more hours. My MO does not want to investigate just yet, since nothing worrisome showed on a very recent CT scan. I don't think he believes that GI mets would present in this way without the CT evidence, yet I have read accounts to the contrary on this forum. I like and trust my MO, but I am having a hard time with this uncertainty and with the fear of having another episode. Thoughts? Currently trying to focus on breathing, meditation, and the realization that clarity will come sooner or later. As always, I am grateful for this forum and everyone here.
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Hi, JodyJ. I have breast cancer in my stomach that has never shown up on scans, even now. It’s only been through endoscopic biopsies. I’m having another tomorrow after one year to see what’s happening in there.
My symptoms were nausea, weight loss, and being unable to eat more than a few bites before being full and not able to continue.
I just wanted to let you know my symptoms. I would assume there are other symptoms as well. Those are just how mine showed.
I do not have any mets to bone, only stomach in two places and now possibly showing in omentum.
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KBL, thank you so much for your response. I must have read your previous posts, and I know there are other members with similar stories. It sounds like my experiences, because they so recent and acute, could be caused by other conditions. I will just have to see if this happens again. I wish you the very best of luck for tomorrow's test and for the results!
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Thank you, JodyJ.
One thing I will say is go with your gut. If you think there is something wrong, keep investigating. If you continue to have GI upset, you can always have an endoscopy to see if they see anything.
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