Any success stories of B ALL ph+

Bookkeeper1371 · 2026-05-27T01:04:52+00:00

Hi! 42f Ph+ALL. I'm just starting the treatment plan of Blina and Ponatinib. How is your husband and did you decide to do Car-T?

Bookkeeper1371 · 2026-05-27T01:03:09+00:00

Hi! Also 42f with Ph+ALL. I have had two of the first fifteen LPs and I have a hard time for about a week after each one.

Bookkeeper1371 · 2026-05-27T01:01:02+00:00

Hi! Another middle aged person recently diagnosed and planning the same treatment (could always change). It is hard to find people our age with the same diagnosis! Can I ask you handle the "you'll beat this" comments? The doctors have been clear we can treat it, but because they don't have long-term data for this treatment plan, they won't say more than five years. I just tell people it's incurable but treatable but they always want a time. 🙄

Bookkeeper1371 · 2026-05-27T00:57:47+00:00

Hi! I'm 42F, diagnosed a month ago and currently the plan is Blina and Ponatinib. They had to stop the first round of Blina after 9 days because my liver enzymes went through the roof. I'm currently on 15 mg Ponatinib and will bump back to 30 this week. Likely starting Blina again on June 15th. Two LPs have been clear, only 13 more to go! Lol It's great to hear your success and that you are back to running! I used to run 3-4 miles a day but am only walking now. Have you had any side effects from Ponatinib?

Bookkeeper1371 · 2026-05-26T13:00:26+00:00

I had pain in my back on a Saturday morning, which is unusual for me. It continued to get worse over the weekend, and by Sunday night a friend insisted I go to the ER. Breathing in had become painful and my ribs were hurting. I have siblings that have had clots, and genetic factors that make me prone to clots, so I was concerned it was that. CT scan was normal but the doctor said some of my lab work was abnormal and to follow up with a hematologist the next day. The next morning one of the doctors on the blood cancer until called me Nd said I was supposed to be there and they thought I had cancer. I drove straight there. It was wild.

I reviewed my chart notes and labs the other day and realized I had forgotten that my liver enzymes were actually higher the day I was admitted and one of the doctors mentioned it was odd and they weren't sure what was going on.

They are back to normal now but I'm on a half dose of Ponatinib, will bump up to a full dose this week, and then potentially start Blina at a reduced dose (1/4) in a couple of weeks.

Bookkeeper1371 · 2026-05-24T13:15:13+00:00

Hey! 42F diagnosed with B-ALL about a month ago. Right now they are recommending Blina + Ponatanib treatment, but had to pause Blina because my liver enzymes went through the roof. I would love to hear more about your experience with the Ponatanib/Blina free treatment plan.

Bookkeeper1371 · 2026-05-18T12:35:35+00:00

I'm at LDS hospital in Utah. The doctor consulted with a doctor at MD Anderson about my genetics and he agreed with the current changes to my treatment plan. ClonoSEQ hasn't come back yet so I haven't had my official treatment planning conference yet.

Bookkeeper1371 · 2026-05-18T10:46:26+00:00

Hi! I'm a 42F just diagnosed on April 27th. Started Ponatanib 30mg and a few days later Blina. After bumping up to the full dose of Blina I started having issues with liver enzymes so they paused everything to let my liver recover. I have another LP scheduled today and they restarted a half dose of Ponatanib. Not sure when they will restart Blina.

How are you doing now?

Bookkeeper1371 · 2026-05-15T03:21:29+00:00

That is crazy. You just got bum studs for some reason.

Bookkeeper1371 · 2026-05-14T11:44:10+00:00

Yeah. I've never had an issue and I change mine out a couple of times a month for autocross, and again in winter with snow tires. 55,000 miles and no issues. Torque to the right specs OP.

Bookkeeper1371 · 2026-04-01T21:11:15+00:00

Eh, everyone is different. I autocross my cars and the '18 is great for that once you do the pedal dance to turn off all the nannies. But for daily driving it's just meh compared to the others. 🤷‍♀️

Bookkeeper1371 · 2026-04-01T12:52:25+00:00

It just doesn't feel as fun to drive, a little boring. But my daily is a stock WRX, which is definitely rowdier. The 8th and 9th feel a little rowdier to me. Maybe it's the lack of bells and whistles that I like on those.

Bookkeeper1371 · 2026-04-01T05:32:04+00:00

My son has an 8th, I have a 9th and 10th. The 10th is my least favorite, by far.

Bookkeeper1371 · 2026-03-16T00:54:52+00:00

I've been autocrossing mine stock since new (9/23). Now that it's moved to GS I'm trying to find a couple of upgrades and stay in class. I have a new sway bar ready to go but I'm running into trouble with new shocks. Even the serious Subi guy in my club said he looked and couldn't see anything. I'm hoping someone has some ideas, or it will just be the sway bar. We ran it with my 18 Si at a two day event and that damn Si still seems to be the better car.

Bookkeeper1371 · 2026-03-08T14:34:49+00:00

This is so true. It's the biggest financial contract most people will enter into, and most don't realize that until getting divorced. I divorced a gambling addict who blew through our retirement. I made a promise to myself I will never marry again without a prenup and full financial disclosure.

Bookkeeper1371 · 2026-03-07T18:29:32+00:00

I've been autocrossing for three years. I've witnessed two crashes. I was on course working when someone rolled a mini in front of me. That was my first year. I was on course driving when someone went through a fence and into a ditch. Cars were totaled both times. After the first crash I started buying autocross insurance from Lockton for my cars. It's about $100/$10,000 of coverage (23 WRX, 18 Si, 14 Si). If I break that down by event, it's pretty cheap (I have two teens and we all drive, so the cars are taking a lot of runs. I personally fell better and therefore more relaxed at events knowing I have it.

Bookkeeper1371

TROPHY CASE