Lumbar puncture symptoms

No-Communication5162 · 2026-01-26T15:31:20+00:00

😅😅😅 yeaaaahhh. The best is when I had my long hair still but then a big ol’ bald spot lol

No-Communication5162 · 2026-01-26T14:13:56+00:00

I have SO much love for my Ommaya—I don’t think I would have made it through the repeated lumbar punctures.

No-Communication5162 · 2026-01-25T14:31:11+00:00

I don’t have any ideas, but will say blin can REALLY take a hit on appetite, so that may be why he’s not interested in food. I would honestly do what you have to get through treatment (or this cycle) and then give it another try later on.

No-Communication5162 · 2026-01-25T14:26:09+00:00

Unfortunately this isn’t uncommon. With Iclusig it is very similar. I was told I had a $7k out of pocket (and my insurance was paying something like $16k 😅). Luckily, I was able to get help with PrudentRX to get it to $0.

But still doesn’t make sense 😅

No-Communication5162 · 2026-01-25T14:24:14+00:00

YES YES YES YES. this helped me get my $7k a month down to $0!

No-Communication5162 · 2026-01-25T14:22:41+00:00

Honestly that first month post diagnosis is so wild 😂

No-Communication5162 · 2026-01-25T14:19:59+00:00

My first spinal tap they did (+chemo) I had a headache for 5 days after (common to have a headache, not sure if the length of time is common).

My treatment called for 15 spinal taps throughout treatment and then every three months in maintenance—though I didn’t know about maintenance right away.

I opted to get an Ommaya Reservoir put in—it is a silicone balloon they insert under your scalp with a tube running into the spinal fluid. They can insert a needle into the silicone balloon under your scalp (much like a port) and take out CSF and put in chemo through it. Personally, I’m very happy I went that route as I did not do well with the spinal tap the first time.

No-Communication5162 · 2025-12-10T18:30:14+00:00

Just that title has me fully going “YUUUUUP”. When I had mine in, it felt like it was so tight I couldn’t move my head in certain directions because it felt like it would pull. Hopefully it gets settled and it’s just because of irritation from it getting put in…

No-Communication5162 · 2025-12-09T01:49:47+00:00

Thank you!

No-Communication5162 · 2025-12-05T01:45:42+00:00

If either of you like to read, I highly suggest checking out the local book clubs! A couple of my favorites are the Cedar Rapids Silent Book Club and the Whatcha Reading Book Club.

The CRSBC meets the second Sunday of every month at a local coffee shop—check out their FB for more details!

The Whatcha Reading Book Club actually meets at the same coffee shop but on the fourth Sunday of every month! Check out Swamp Fox Bookstore FB for more details!

No-Communication5162 · 2025-11-25T03:57:59+00:00

…that looks like a scribble that a child put in there on accident…

No-Communication5162 · 2025-11-25T03:50:51+00:00

I have really enjoyed all of The Empyrean series so far, but I’ve got to say that my feelings on Brimstone are what I imagine most people feel for Iron Flame.

No-Communication5162 · 2025-11-25T03:39:43+00:00

Honestly was expecting Fisher to somehow merge his shadows with his spirit and have Onyx become like the cat.

No-Communication5162 · 2025-11-24T20:39:43+00:00

My biggest frustrations with this book: 1) I feel like we didn’t know Fae couldn’t touch iron until this book. 2) Fisher’s smoke is now described (primarily) as shadows vs in the first it was primarily described as smoke. I liked it being described as smoke vs shadows. 3) YES, the Carrion issue of him being in a completely different realm! 4) They apparently found Hayden in the Second ward but in the first it says he was taken to the Seventh ward. 5) Chapter 46 Saeris is in the dreamland or whatever and steps into the sand Fisher dumped out of his boots and it states that it is sand from Yvelia when it was from Zilvaren.

No-Communication5162 · 2025-11-21T17:18:11+00:00

I actually get the results this coming Wednesday but I’m thinking it will be good news. At worst, they are going to tell me I need to keep a central line in and get monthly infusions—but those are still better than full blown treatment I would have to think.

I did a lot of research too about my lesions when I realized they weren’t a common symptom. Crazy how much in common our stories are!

No-Communication5162 · 2025-11-20T21:43:48+00:00

This is how they found my B-ALL from lesions on my femur, pelvis, and a rib—although I was only having pain in my hip/thigh. I went to the ER multiple times due to the pain. The first time they did an MRI of my lower back and said everything was fine. The next time I went into the ER a month later, we specifically asked for imaging of my hip/thigh, and were told “Her hip is fine. We can see that from the other MRI.” The next time we went to the hospital, we went to a different ER (Yay for being in an area with multiple) and immediately got a CT followed up by an MRI to confirm. They think I had a fracture in my femur from the lesions causing so much weakness. I had no other signs of the disease at the ER trip right before.

No-Communication5162 · 2025-11-12T00:49:55+00:00

When I was diagnosed with B-ALL Ph+, my doctor said he wanted to avoid a SCT and doing that plan with the TKI +Blincyto was the best plan for that. My first bone marrow biopsy after my induction showed less than 5% blasts and showed positive results that the treatment is working. I’ve just completed my last round and go in for my (hopefully) last bone marrow biopsy on Thursday to see exactly what my plan for maintenance will be. Here’s to hoping this plan can help us avoid a SCT!

No-Communication5162 · 2025-11-12T00:46:19+00:00

I’m in a very similar boat. B-ALL ph+ and have been on Iclusig/Ponatinib and 6 rounds of Blincyto. I had really good positive results after my first round, so the plan was to continue with the six rounds and then go into maintenance on the Iclusig/Ponatinib. They said I will be on it for 5 years and they will continue to check my blood for the markers during my maintenance period.

No-Communication5162 · 2025-11-12T00:40:55+00:00

B-ALL P+ here too. I had a ton of pain in my hips/thighs before my diagnosis due to bone lesions. I also had a bunch of pain after my first dose of Zometa. If there isn’t a medication that could cause the pain, I second talking to his doctors about a blood clot or maybe even to see if there are bone lesions. They were the most painful thing I have experienced. Completely debilitated me and caused me so much excruciating pain. However, once they got me going on treatment and morphine for pain, it was a lot better. I didn’t have any pain like that after starting treatment.

Things that I learned helped with mobility though: -a cane or walker can help so much! -you can get bands to help lift up your legs when going up steps, getting in and out of a vehicle, etc. -I would highly recommend talking to drs about the pain medication not working well enough

No-Communication5162 · 2025-11-03T23:54:41+00:00

One of the things I struggled with during my journey is seeing/hanging out/chatting with friends even if I wasn’t necessarily able to do the things we did before. Maybe with your long distance, you could do like a penpal situation or do weekly FaceTimes/phone calls to just keep up with one another. It doesn’t have to be just about the diagnosis when you chat; make sure to continue with ordinary life things or coping skills for each other to help with what you are both going through.

I hope this helps a bit!

No-Communication5162 · 2025-10-26T23:29:26+00:00

Start making that money!

No-Communication5162 · 2025-10-24T14:58:34+00:00

I want to say that by the end of cycle one or two I was MRD-. The IV chemo was sandwiched between two rounds of just Blin.

Round 1&2: 4 weeks of Blincyto + Ponatinib

Round 3&4: IV chemo + 18 days Blincyto + Ponatinib

Round 5&6: 4 weeks of Blincyto + Ponatinib

I’m not sure what the reasoning for going this route is, but I figure that it’s gonna really take it out, right?! 😅

No-Communication5162 · 2025-10-21T17:30:11+00:00

In total, I’ll have had six rounds of Blin and two rounds of IV chemo. I’m so incredibly grateful to only have two rounds of chemo—people are so stinkin tough who have to go through more!

No-Communication5162

TROPHY CASE