Team ILC Warriors
Comments
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@russianbluecat . 🩷sorry to hear about what you are going thru and so glad that you have a surgery date set. It’s a lot. Go do whatever makes you feel happy for the rest of the summer and find something that brings you joy. I have a couple photos of favorite places that I would bring up on my phone to remember how I felt when I took the picture…cheap guided imagery!! And if you find scents relaxing, lavender can help…they make a little roll-on the size of a lipstick that can go everywhere with you.
Sending love your way - you are not alone.1 -
@domi26 - how are you and how is your mother doing?
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@loves_yosemite thanks for asking. We are getting back to normal step by step. My mom is living her best and I am so happy for her. She got back on track with her activities at work and at home. If you were able to see her, you would never guessed that she went through this. Thank God for this. Take care of you all and be strong! 🤗
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Thank you so much loves_yosemite.
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@OG56 - How did your appt with your surgeon go and when are you scheduled? Damn this ILC - it's so sneaky!
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Hi everyone. I'm so grateful for all the information on this website and the lobular breast cancer alliance web page as well. I had my first appt with my MO last week and when I asked what his opinion was of using the oncotyoe test for ILC when it comes back late but almost always has a low score he said " it doesn't come back late it comes back in the 1st 5 years, IDC comes back late." I also mentioned that I already have a regular GI doctor so she can watch for any GI recurrence and he said "it's rare for it to go to the GI track it goes to liver, lung, brain and bone." The we proceeded to talk about chemo and tamoxifen. I was just crashed after this meeting. I started doubting myself and everything I read. I re-read everything just to make sure I wasn't going crazy. From everything I've read here and other reputable sites I was prepared to do ovarian suppression and an AI and even possibly radiation (though I did have a double MX, seeing RO tomorrow). Anyway, thank you for all your information and thank you for starting this discussion.
I'm seeing a different oncologist next week at a world renowned cancer center.
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@pharmdee Hi. Although I don’t know much about the oncotype score, as I was de novo at diagnosis, I can tell you I don’t think going to the GI tract is as rare as they think. There are many of us with it in our GI tract. I think they need to do more studies of this.
Here is something you may want to show your oncologist.
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Hi @kbi. Thanks for the post. This is what I mean. I've lost confidence in him due to diagrams like the one you included.
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@pharmdee Sadly, he is not the only one who has no clue about lobular. There are many with no clue, as even the doctors at Moffitt didn’t investigate further when they knew some kind of cancer was invading my body and didn’t give it a second thought when it wasn’t multiple myeloma. That’s what gave it the time to invade my stomach.
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@kbl How are you? I am concerned and sorry you stopped your treatment. Can you check if you can join the trial or have the abemaciclib in the combo with the new drug they just tested for ESR1 mutations?
Abemaciclib plus lasofoxifeneIn one study, abemaciclib plus lasofoxifene was well tolerated and effective for ESR1-mutated, ER+/HER2− mBC that progressed after CDK4/6i. The combination led to:
- A PFS of about 13 months
- An ORR of 56%
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@laguna24 Thank you so much. I appreciate you, and you are so knowledgeable. I looked at the trial, and I would not qualify. I looked at the exclusion criteria. I am doing well. I’m still very fatigued, and I’m not quite sure if it’s my body still trying to get rid of the Enhertu or what. It’s only been four weeks since my last infusion. I really am at peace with my decision.
How are you doing?
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@kbl I am on Kisqali and Exemestane. Still had allergic reaction, but not as sever as it was with Letrozole. Did research on types of histamine receptors. Found useful info about 4 types of receptors and antagonists to block them (something doctors or nurses don’t know as they mostly concern with addressing cancer and not SE). For H1R blockers I use Allegra 180 mg. This one doesn’t go through the brain blood barrier and doesn’t knock you down next day. For H2R blocker I use Famotidine. And it works. The H2 receptors are in your stomach. Maybe it can help you too. Allergic reaction can manifest itself in all different shapes or forms. Mine was itching. For few days I lowered my Kisqali to 400 mg just to give me some break. Now I can be on clinical dose of Kisqali (600 mg) and Exemestane 25 mg. Next cycle will try Letrozole as statistically it works better.
How do you fight your fatigue? I drink protein shakes in the morning to keep my muscles toned. You don’t need to go on trial. Your doctor can request this medication for you.The FDA granted fast track designation to lasofoxifene in May 2019 for the treatment of estrogen receptor (ER)-positive, HER2-negative metastatic breast cancer in women with ESR1 mutations. The fast track designation allows for the expedited development and review of drugs that treat serious conditions and fill an unmet medical need.
I wish you all the strength and hope
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@laguna24 I’m so sorry you’re allergic. I’ve never had that issue. I do take famotidine because of my acid reflux, so that’s good.
I don’t really do anything for the fatigue. Most of the drugs I had been on, I just took a nap every day, and it helped somewhat. Enhertu just made it so I couldn’t function at all.
I will research the drug you mention a little more, but my mind is made up to stop. I’m hoping the fatigue can go away for a little while.
I have an appointment with palliative on Wednesday. I am definitely not going on hospice at this time. I know I’m not ready or near that time.Thank you so much for looking out for me. 💕
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@kbl please hold on. Keep fighting.
Hugs1
