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Want a ray of sunlight about Lobular today?
I have to share the ray of light I saw and felt today, in case it will also lift your spirits. Lobular cancer has made me wary. Feel like I'm waiting for the other shoe to fall. When Amanda Peet (actress) was diagnosed with lobular, I sensed the same caution in her comments. Not enough is known, so we sit and wait. Have our checkups. HOWEVER, today I walked with an old friend who mentioned another friend had had lobular 11 -r 12 years ago. What? And she's fine. She's a nurse...and she's fine. Probably in her 60s now. SO this must have happened in her fifties. In addition, she was not able to take estrogen blockers. Had a reaction to them. Now, I do not recommend this to anything. Don't get me wrong. I'm on anastrozole and knock on wood, so far I'm fine with it. But she could not take it. And she's fine. So take this all for what it's worth. For me, it's a good day.
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That is something to celebrate!
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1 ReactionThis is without a doubt the singly most positive thing I've heard about lobular cancer since I went through treatment 2 years ago. You hit it on the head - despite a positive attitude, I am constantly waiting for the other shoe to drop. Tell your friend with the friend 10-12 years into survival - THANK YOU! I seriously search this site daily for any good, promising news about lobular cancer. You have made my day. All of this positive energy and hope are not going to waste.
So grateful for the online community of this group! Here's to tomorrow, and tomorrow, and tomorrow......and all the good news ahead!
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10 ReactionsI know! It was a huge relief to hear about my friend. More, please. ❤️
I just had to stop taking Letrozole due to 3 bouts of projectile vomiting so fierce that my face 2 weeks later still has these fading blood patches. I am 75 years old and had this episode while eating dinner and was on my 4th month after lumpectomy for ILC with Clean edges and no lymph node cancer level 1. I am waiting to start Radiation and so happy to read that maybe not being able to tolerate estrogen blockers may not be as terminal a problem. I had to take pictures to send my Doctor and he suggested I stop for a few days. I had a similar side effect from one other drug a long time ago with the vomiting and a restart of that drug was again started but the vomiting was worse. However I never had blood in my face with the first episode drug reaction. I took 4 days this time to fully recover with this latest event and I will not put up with side effects that are like being poisoned! Two weeks later I still have faded brown spots from where the blood was trapped in my face. Pancake make up is hiding it pretty good now however my stomach is having loads of gerd issues and I can only eat small amounts at a time. I joked to my husband that I am on a new weight lose program that does not require a prescription or injections. Maybe this was a blessing!
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3 ReactionsHas anyone else had this kind of side effect from taking Letrozole? The list of side effects seems endless! Projectile vomiting?
@tpoipu51 so sorry that you had that reaction. I was not started on the blocker until about three weeks after my radiation ended. You may want to try something different. There are three or four of them. In no way am i advocating not taking a blocker. But my friend did have a reaction. There are decisions to be made with this disease. Not easy! And they’re different for everyone. I always ask my dr how many patients do you have who choose. ….
This is great news! I know what my oncologist would say, though. He'd repeat his usual mantra that ILC can lie dormant for many years & it often recurs much later, after 15-20 years. That's the problem. It's a roll of the dice.
@jmab yes, that is true for lobular. They need more research.
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1 Reaction25 radiation treatments done....8 + 5 ? more....then Anatrozole....what does anyone think of CK 4/6 drugs??? Just read onocologist report. May be put on them but I have leukemia and immunity disorders....so he is pondering. Good doctor...always looking for things to help. This week I have a CT on nodule in lung....so let's hope it is nothing. Smiles.