u/AmandaRosesCO

First off this group has been a real blessing to me and I’m incredibly grateful to all of you for your knowledge and sharing your experiences.

Maybe you can offer some perspective. Over the past week I’ve had a lot of pain in my left rib cage and radiating phrenic nerve pain. It’s almost exactly like when my gallbladder failed and compressed thar nerve. This doesn’t hurt as much, but it’s very uncomfortable and I’m also very gassy which i never really am. I don’t drink or eat the kinds of foods that make me gassy - i used to and the changes i made years ago are still part of my life.

Also my lymph nodes have been swollen in my throat since July and never went down after an ear infection. My hips are so sore they wake me up at nights and last night i woke up at 3am with a sharp pain in my abdomen.

I’ve basically lost my appetite and the pain in shoulder, back and ribs was so bad on Tuesday i took half the day off and worked from bed on Wednesday. I felt better yesterday but it’s kind of worse today - i never got back to sleep.

In retrospect the achy feelings are not new, they just seem worse lately. I also have a tightness in my sternum and collarbone. I’m really tired too. I can so a couple of chores but then I’m wiped out.

Part of me thinks I have hypochondria and part of me is just like - no this really hurts.

Are these normal things? I did submit a note to my regular doctor and the oncologist on Wednesday night on the portal but heard nothing. My first oncology visit is 10/14 and my FISH test should be done any day now.

Are these normal things? Is there anything I can do for myself between now and 10/14 to help me feel better? I’m physically pretty miserable right now.

Thanks!

My results are trickling in from the oncology labs. Tonight I learned my cells are unmutated. While I am still waiting on the FISH results, unmutated is apparently more highly correlated with the less desireable markers. I was really hoping the odds were a little more in my favor for watch and wait for many years to come. Maybe I will still get lucky, but this gives me time to learn and digest.

Anyone else unmuted, and what does that look like for you? Thanks in advance!

I am waiting for more details about my markers so I understand if I am on the slower side of things or not before I sit my kids (22f & 23m) down and let them know I have CLL. I mean I do have it - the flow cytrometry report is pretty definitive. My grandmother died at 77 from lymphoma and my dad died at 48 from esophageal cancer. My MIL died from pancreatic cancer at 71 in 2023 - I got divorced in 2025, so I’m on my own with this. I’m a 52 yo woman.

My son has had 15 heart surgeries and had a heart attack almost 3 months ago. He’s also autistic and has several other birth defects. My daughter just got blindsided by her boyfriend breaking up with her after 2.5 years, and she’s about to move out with friends. We also just moved last month after I finally sold my house. I’m renting now, and I don’t want my daughter to think she needs to stay with me and her brother - I want her to enjoy her youth. She’s the same age I was when my dad died.

I’m asymptomatic- mostly. I am very tired but I figured that was my child having a heart attack and a huge move and a tonsillitis/ear infection in July and severe cat allergy from the new place in August. I was finally feeling better - then this. Sigh. I don’t think I’m dying or anything - I just want to get all the details down before I tell my kids so I give the impression of having things under control. I know I don’t, but they don’t need to worry anymore than they already do about my son’s health. He only has 1/2 of a heart and will eventually need a heart transplant.

I did get some enormous bruises when moving and have had some 14 day long menstrual cycles that were particularly messy and some heavy nosebleeds, but i am perimenopausal and the cat allergy gave me a sinus infection. I am desperately seeking equilibrium after the past 3 months. I didn’t need this.

I’m rambling, sorry. I also don’t want to tell my mom yet - her brother died the day before my son’s heart attack and I know far too well how hard it is to have a sick child at any age. I just don’t want to make anyone worry prematurely or to upset anyone if they can wait until I have more answers. I presume I’ll be on a watch and wait given my lowish numbers and that they’ve been steady for 6 months. I really wish I didn’t have this, but I do, so I need to figure out how to live with it.

Anyway, how did you tell family members? What would you do the same or differently? Any other women who were diagnosed in perimenopause, and how did that impact you? I had horrible night sweats for years, but I started Zepbound earlier this year and that ended those - also have PCOS (I know they renamed it recently) and fibroids so the bleeding and hormone stuff is confusing.

Any experience/insights are welcome. Thanks.

I turned 52 last week and have been on zepbound for 4 weeks - the last few years perimenopause has kept me waking up in a night sweat puddle around 2 am - not any more! I’m actually a little chilly - and after the misery of being constantly overheated for multiple years it makes me happy!

Also I noticed the GLP1 baby boom - I’m curious how many of those moms might have undiagnosed PCOS. I have PCOS and the insulin resistance impacted my fertility. I only got pregnant after losing about 20 pounds 24 years ago, then my weight was really down from pumping 80 ounces a day, and I got pregnant again when my son was 4 months old.

Anyway, I am so much more comfy without peeling myself off sweaty sheets.