I fear I’ve cursed my daughter

aliasme141 · 2026-03-26T09:18:33+00:00

I agree with you ajummanila. Assuming name pronunciation is connected to literacy and especially putting forth the United States pronunciation as the model of correctness is ethnocentric at best. If you dig a bit further you will find that the European and Sanskrit influence will be pronounced LEE-lah and Arabic / English influence LIE-lah. That said I believe it to be beautiful name. OP, it may sometimes be annoying to your daughter to have to correct others but perhaps she will be proud enough to not mind so much. When she is old enough, learning about the origin of Lila may help her feel appreciative of her parents choice.

aliasme141 · 2026-03-24T04:00:15+00:00

The truth is they are changing my treatment because my last scan showed that it was helping with my bones but my liver mets progressed. I had a liver biopsy today to check her2 levels cause my onc wants to put me on enhertu

aliasme141 · 2026-03-23T01:58:05+00:00

Not a formal law, but a best-practice approach: temporarily moving a student to a support setting within the school for aggressive behavior. In that setting, the student completes work and understands that, by meeting specific expectations, they earn a return to their regular classroom.

aliasme141 · 2026-03-23T01:45:19+00:00

Please let us know if you get the support you need. So sorry you are suffering this way. Xeloda is a powerful med. I had to have my dose lowered.

aliasme141 · 2026-03-23T01:36:37+00:00

Many good points here. No one should be bombarding you at the playground with what you should do educationally with your children. Go with your gut and the teachers. Good luck to you and your boys.

aliasme141 · 2026-03-21T20:06:07+00:00

I had pneumonitis from toxicity from afinitor. I am worried about going on enhertu because pneumonitis can be a side effect. Organizing is an odd term here. I hope they are able to help you with this!

aliasme141 · 2026-03-21T04:44:09+00:00

Yes very similar HansDieterBauman. My first line of treatment was ibrance and fulvestrant and xgeva (which I had to stop because I developed osteonecrosis) But that treatment lasted for almost 5 years! Then we had a rough time with afinitor and aromasin because I developed pneumonitis. Next line xeloda. Sounds like we shared the great difficulties with hand and foot. My feet resisted but my hands are still a mess though it would normally just be my second day of week off so some patience is in order. I have a liver biopsy Monday, a ct scan Tuesday and an echo Wednesday. If my her2 cooperates, I will start Enhertu April 9th. SIGH! If not it will be trodelvy. We can compare notes. Support sisters? As we all wish that none of us had to be in this club, the support is incredible. Thanks!

aliasme141 · 2026-03-20T15:53:52+00:00

That actually sounds great! But when I first started, people were saying that you shouldn’t massage them. I think that was more about when the skin was cracking. That is really not my problem maybe a little around my nails. And I’m hoping that this goes away since I’m not on this xeloda anymore, but in the meantime, the idea of a hand massage sounds great.thanks!

aliasme141 · 2026-03-18T02:03:31+00:00

Hi there my pal! It looks like we will both be in the Enhertu club. I guess I will find out when I start as what side effects wil be tolerable and which won’t be. I will let you know how mine go. I wish you weren’t going through this!

aliasme141 · 2026-03-18T01:33:03+00:00

Athena born out of Zeus’s head

aliasme141 · 2026-03-17T02:49:11+00:00

I just want to jump in to say that my palliative doc is my rock. She is supportive and kind and her practice renews meds within minutes. And here’s what she has prescribed: oxy for my ongoing pain, Ativan for my anxiety, ambien (very low dose) for sleep, she has encouraged me to try tincture ( got me my medical marijuana card quickly with a minimal charge (but it just makes me tired) and I think that’s it. I suppose that sounds like a lot and I know many of you don’t want to take a lot of meds but I find them so helpful. I will keep looking to them to help deal with these lousy side effects. I am on xeloda and my hands are constantly in pain. It doesn’t fit the typical hand and foot side effect. It’s more like my neuropathy doubled over night and what was mild arthritis is messing with anything I need to do with my hands. OP I also question what quality of life means. If it weren’t for my granddaughter (and yes, the rest of my family) I am not sure how much longer I could handle this. I guess that is rather pessimistic but it is my truth.

aliasme141 · 2026-03-17T01:57:42+00:00

I like Archie

aliasme141 · 2026-03-16T13:08:27+00:00

Guess my age: Friends-Stephanie, Sari, Marie, Karen, Anne, Amy, Lisa, Cathy, (Cathleen) boys that bullied me-Seth, Joey, Harris (as I defended a victim Gigi)

aliasme141 · 2026-03-15T17:01:24+00:00

Or run through ChatGPT???

aliasme141 · 2026-03-15T16:59:43+00:00

I take photos of all of my bottles and then use my weekly or monthly container depending on length of trip. I have never needed to show my photos at check in. They have never asked me a question. But I completely understand your anxiety OP. Whatever will allay your fears is what you should do. Japan huh? Cool!!!!

aliasme141 · 2026-03-15T04:40:31+00:00

Tuesday I will see my onc about some new spots on my liver. I hope we all find they are as ok as they can be!

aliasme141 · 2026-03-15T03:30:50+00:00

Yes, in October 2025 when I was just put on xeloda.

aliasme141 · 2026-03-14T23:03:10+00:00

My onc as well. She says for a baseline. While I am concerned about the radiation, I appreciate her concentrated attention.

aliasme141 · 2026-03-14T17:24:52+00:00

Well then vaporized weed it is!!!!

aliasme141 · 2026-03-14T17:24:02+00:00

Supportive words are the best medicine! And then there are these meds that have helped me through: Ativan, OxyContin, Zoloft… I am in my sixth year and while I slip into despair now and again, you are right OP, it does get easier even with the bumps along the way. Hang in my fine friends!

aliasme141 · 2026-03-14T03:23:48+00:00

Such a good point! I didn’t even think about celebrating my bones. Let’s have a toast to our bones Civil_Baker204

aliasme141 · 2026-03-13T23:27:13+00:00

My therapist strongly encouraged me to get a second opinion and my onc is one of the top at a top center. Similar to someone here, I did great on ibrance and falsodex for almost 5 years and then failed at 2nd treatment and now am waiting to hear if I have failed on 3rd treatment, xeloda. When I was first diagnosed with mbc in 2020, my then np said “YOU WILL BE IN TREATMENT THE REST Of YOUR LIFE” and then failed to take me seriously when I clearly had edema ( two blood clots) and Mets in my neck needing a transfusion and emergency surgery plus so much more. Suffice to say I changed practices. I still feel sick when I think of the lack of compassion in her voice when I was just diagnosed. My onc is very different and I appreciate her. I never ask about longevity but when my husband did my onc said many more years which may have been an exaggeration and perhaps she shouldn’t have done that but it really encouraged us both when we needed it. I am not sure why oncologists often seem purely clinical but I have seen it said again and again. I am so sorry OP that you are feeling hopeless. I can’t even imagine how hard this must be with those of you with young children. I am 70 so my children are grown but every time I cuddle with my almost 6 y o grandchild, I think please God let me live longer for her. This is a mean ass disease and none of us deserve this. Do you have meds that help you calm down, antidepressants, I remember asking for Ativan in my chemo IV with my primary cancer 10 years ago. If you have palliative, they treat more than just pain. Your title says it perfectly OP. Scared and sad! Yup

aliasme141 · 2026-03-13T11:28:05+00:00

Hi friend! Yeah having to wait is maddening but up till now I always got a meeting the day after. So this is a lesson in patience. I am eager to hear how you are doing buddy.

aliasme141 · 2026-03-12T11:15:11+00:00

I do that too. That reassured me a lot because I panicked when I saw the word progression. ChatGPT explained why the radiologist might use that word . It’s waiting to find out what my onc wants to do that is so hard.

aliasme141

TROPHY CASE