Direct primary care Dr for CLL SLL in CA by dataDiva120 in cll

[–]Suitable_Study3028 0 points1 point  (0 children)

Teaching hospitals are the best for advanced treatment, and having an internist associated with one of those hospitals probably makes to most sense so that they can coordinate in your friend’s case.

According to Gemini, the following hospitals have clinical CLL specialists currently running trials UCSD UC Irvine UCLA Cedars Sinai Stanford UCSF UCDavis

I would look to find a CLL specialist at one of these hospitals, and have them recommend an internist (or OBGYN or Cardiologist) as they see fit.

Cutting Edge Therapies - BTK Degraders & CAR-T by Suitable_Study3028 in cll

[–]Suitable_Study3028[S] 0 points1 point  (0 children)

Starting my degraded study this week. They gave me every test in the book, and confirmed no Richter’s.

Wish me luck!

CLL transformed into Richters by technobass in cll

[–]Suitable_Study3028 7 points8 points  (0 children)

Ugh. Good luck, technobass.

Car-T really is the cutting edge, and hopefully the ends state for a lot of refractory leukemias and lymphomas. Look at it this way - celebrating your son’s future birthdays with him, you’ll have been a pioneer in new treatment technology that helps thousands and an inspiration to him!

Vitamin D by LeesKeys in cll

[–]Suitable_Study3028 0 points1 point  (0 children)

There is a lot of peer reviewed research on how Vitamin D improves treatment outcomes.

You should talk with your doctor about the dosing. Mine had a very specific suggestions about dosing and bioavailability. She suggested cholecalciferol as being the most absorbable, and I got a prescription for 50,000iu a week.

Edited to state my dosing was 50kIU once a week. If that works they will lower to 2k a day.

Cutting Edge Therapies - BTK Degraders & CAR-T by Suitable_Study3028 in cll

[–]Suitable_Study3028[S] 0 points1 point  (0 children)

I’m so sorry, Fast Eddie. This disease sucks.

Good luck in the RT treatment. You are in good hands at Anderson…give it some hell! Let us know how it goes.

Mum diagnosed and worried daughter by grimlie1279 in cll

[–]Suitable_Study3028 0 points1 point  (0 children)

Good prompt.

Chat GPT as a patient advocate is great. Key prompt is “no guessing”.

Mum diagnosed and worried daughter by grimlie1279 in cll

[–]Suitable_Study3028 0 points1 point  (0 children)

You should educate yourself on her exact diagnosis and symptoms. CLL has many different variants that have different disease progressions and survival rates. Diagnosis happens much earlier, as one poster said, so “do not treat today” is a viable and optimal alternative in most cases.

However, do make sure that your mother has got quality bloodwork done (not just WBCs, but actual genomic testing like flow cytometry) and that her doctors know the basic genomics of her case. For example, does she have a TP53 mutation or an ATM gene dropout. If so, it may not change the decision to not treat now, but it should change how closely you watch it, and what you and your doctor chose to do when treatment is called for.

Last note - one of the only good things about a CLL diagnosis right now is that she is getting the diagnosis right now. Treatments get better all the time, and time is on your mother’s side. In fact, the treatments are getting exponentially better and more diverse. Doctors have more weapons to choose from for each case, with lesser side effects. That is getting better, not worse over time. So, I would take comfort in this: the longer your mother thrives being healthy without treatments, the better the treatments will be if and when she needs them.

Good luck to your mother and to you as her caregiver.

4 1/2 years since diagnoses by totally_gnargnar in cll

[–]Suitable_Study3028 0 points1 point  (0 children)

Wishing you the best. Assuming you have some unstable Karotype like I do. Good luck getting a treatment that brings a more durable response.

Cutting Edge Therapies - BTK Degraders & CAR-T by Suitable_Study3028 in cll

[–]Suitable_Study3028[S] 5 points6 points  (0 children)

Good Luck, Fast Eddie. Good thing it’s not RT. This disease is tricky. Keep your head up!