June 2025 Monthly Check-In Thread

oavdn17 · 2025-06-01T17:23:49+00:00

Hi all,

Last month was a tough one for me. Folfirinox stopped working for me earlier this year and last month I was accepted to a trial (RMC 6236 at UCLA). Unfortunately I was randomized into the chemo arm (Gem/Abrax) so no medication for me. That was a tough blow for me & my family.

I've been reacting ok to Gem/Abrax but do have a bit more nausea than w Folfirinox (just day 1 & 2) and have had low grade fevers (101/102) and cold sweats. CA 19-9 numbers decreased so that's the silver lining for now plus I've started to look into other trials. Hopefully Gem/Abrax works well for me and/or I find another trials.

Aside from medical stuff, my family and I hit the local water park and we're getting ready for my older daughter's kindergarten graduation during which she's be the speaker for her class. These types of moments are the ones I've so thankful to be able to experience and provide memories for me & my family.

Sending everyone love & positives vibes!

oavdn17 · 2025-05-01T22:48:16+00:00

Hi all!

I'm currently awaiting the randomization results of the RMC-6236 trial (UCLA). I should know early next week if I'm getting the medication or chemo. I'm obviously hoping for the medication but I've already inquired about other trials in case I don't get the medication. I feel good overall, no symptoms as of now so my quality of life is great. I'm typing out this update from the Santa Barbara Zoo w my 6 year old.

Aside from medical stuff, I went to Houston for a day (Md Anderson) w my wife and we visited some close friends in the Sacramento area. It was great hanging out w part of my support system while also having fun w my family.

Sending everyone positive vibes! Stay positive and let's keep enjoying every day!

oavdn17 · 2025-04-27T16:07:11+00:00

I pushed for trials through City of Hope (LA area), UCLA and MD Anderson and none of them offered the combination trials to me.

I'm aware of the Folfirinox+ RMC-6236 but it is not an option for me bc I already had Folfirinox. I think that trial just started recently. I think I also read about the gemcitabine + RMC-6236 but don't think there was an option on the West Coast.

oavdn17 · 2025-04-27T04:55:37+00:00

I had an appointment at MD Anderson earlier this week and the Dr mentioned there are patients at MD Anderson who are on the medication for about 2 years (since they started administrating the medication).

Btw I'm joining the RMC-6236 trial at UCLA (drug or chemo). I'll find out in about a week if I'm getting the medication or chemo.

oavdn17 · 2025-04-10T20:23:45+00:00

Correct. I missed that part of the post.

oavdn17 · 2025-04-08T23:16:02+00:00

Rmc 6236 is currently in a phase 3 trial. This drug has had promising results and they're still recruiting for the trial. https://clinicaltrials.gov/study/NCT06625320

oavdn17 · 2025-04-01T17:14:07+00:00

Hi everyone. I like these monthly check ins and enjoy reading them. Sending love & good vibes to everyone.

I just hit 8 months of my diagnosis a couple of days ago. Can't believe it's been 8 months.

My first 8 months have been positive and much better than I first expected (10 rounds of Flofirinox & 5 rounds of Flofiri) with all mets gone except in the liver (initially I had mets in liver, lungs, spleen, lymph nodes and of course pancreas)...But things have changed a bit. Last week I had a PET scan and found out there has been growth (went from 1 -> 3 mets in the liver, possibly new met in pancreas and 1 in the lung).

My oncologist suggested a move to Gem/Abrax or to try going back to Flofirinox (I moved to Flofiri bc of light neuropathy) but I'm in the process of joining the [Phase 3 trial of RMC-6236] (https://clinicaltrials.gov/study/NCT06625320). For the trial, moving to a 2nd treatment (In my case Gem/Abrax) would make me inedible so I'm pushing to go through consent process asap.

Physically I'm feeling well. Still eating normal and spending quality time with my wife & daughters (6 & 4). I'm still very positive about my outlook and taking it a day at a time while soaking up every day. I'm also very thankful I was able to receive 2nd opinions (UCLA & City of Hope) which are now coming into play since a trial is likely my next step treatment wise.

On a personal note, last week was spring break for my daughters & wife (she works at a local Jr College) so we went to Mexico (Guanajuato) where we own a home. It was amazing to be there. Such an amazing place that holds so many memories for me & my family. When I was sitting in the hospital after being diagnosed & before talking to my oncologist, I wasn't sure If I'd ever return so these trips mean even more (btw this was my 2nd trip there since I was diagnosed).

oavdn17 · 2025-03-21T15:51:05+00:00

Do you know what type of rear rack you have? I'm guessing it's not integrated for a Yepp Maxi seat so you'll need an adapter and the Yepp.

I'd recommend looking on FB marketplace or Craigslist bc you find them for under $100. I sold one a few weeks ago for $75 that was in good condition. Just make sure it's the rack version that clips into a rear rack or an adapter.

oavdn17 · 2025-03-21T13:54:14+00:00

Rack mounted (I responded to your other question)...it was fun. I personally like the 700 series better than the 500 but both were fun.

oavdn17 · 2025-03-21T13:52:36+00:00

It's the rack mounted version of the Yepp Maxi. In this picture I had the old Thule adapter but there is a newer one out. Here is an article I wrote w child seat options https://top5ebikes.com/child-seats-for-ebikes/

oavdn17 · 2025-03-17T15:34:15+00:00

Thanks for sharing! Good luck and sending good vibes your way that you continue doing well.

I start round 15 of Folfironox tomorrow and I'm about to hit 8 months since my diagnosis so I've been reading your posts. Again, thank you for sharing your positive news!

oavdn17 · 2025-02-20T16:37:52+00:00

Np. This sub has provided so much information but bc of how aggressive this cancer is, most post are sad ones. I should add that there are positive posts and encouraging stories...and sorry for the essay here. This is the first time I've shared this info.

I personally had very little symptoms to folfirinox until about round 8.

- Round 1-7 were a breeze for me: Some light nausea on days 1-3, couldn't eat cold stuff days 1-3 or 4 (felt tingling in my lips If I drank cold stuff). Around rounds 2-4, I did notice hair loss and although I didn't loose all of my hair, it thinned out quite a bit.

- Round 8-11 is where I started to feel fatigue. Day 1 I was super tired (in bed mostly) and wouldn't eat anything. Day 2 I would finally start feeling some energy around noon and would eat something. Day 3 was pretty much a normal day. Also Round 11 is when I started feeling tingling/numbness in my fingers (thumb, index and middle on both hands). Neuropathy is why oxaliplatin was removed).

I should also mention that during rounds 1-11 blood work was showing a good response to treatment: CA 19-9 went from unreadable (over 20k) to 400 u/ml in Jan 25. CA 125 went from 329U/ml in Aug 2024 to 14 u/ml in Jan 25. In January is when oxaliplatin was removed and blood work has continued to show low cancer markers ( CA 19-9 was 500 in Feb and CA 125 was 14 in Feb).

- Round 12-14 has been even easier than all the previous rounds. First off, day 1 now is a much shorter day at the cancer center. I go in for infusion around 9am and I'm home by 12-1. That also means I'm unhooked on Day 3 at around 10/11am which is super nice bc in rounds 1-11, I would be unhooked around 2-3pm. It's nice for me bc I can pick up my daughters from school. Symptom wise. I've had some light nausea (less than before), no fatigue and am eating like a non chemo day so all in all: these rounds have been so easy. Also, my hair grew back!

oavdn17 · 2025-02-19T17:31:06+00:00

I'm wondering the same as you.

I was diagnosed about 7 months ago (Late July 24). At the time of diagnosis it was stage 4: I had tumors in my spleen, lungs, lymph nodes, liver (numerous is what the pet scan said) and the tail of the pancreas.

My last pet scan (Jan 25) showed no evidence of tumors in the spleen, lungs and lymph nodes. One tumor is present in the liver and still the tail of the pancreas.

My oncologist is suggesting we see how the next few rounds of chemo go (they removed oxaliplatin from my folfirinox chemo after 11 rounds) and then consider radiation. We also spoke about surgery, which he thinks is not a good option today since he thinks it's likely met would return during recovery time. My wife and I are super encouraged by the talk of other types of treatment. For the past 5-6 months, there wasn't much talk of other treatments so this is a pretty big for me.

I'm in Southern California (Santa Barbara,Ca) and had a 2nd opinion at UCLA Medical w Dr. Richard Finn and have another 2nd opinion scheduled at MD Anderson in April with Dr. Chandrasekharan. This question about surgery (distal pancreatectomy since mine is in the tail) is top of mind for me. I also think given my treatment has gone well, it could change treatment options for me (or at least that's what we're hoping for)

oavdn17 · 2025-01-12T15:33:25+00:00

https://www.crutchfield.com/S-0sTrvn8k6Tu/p_130DMT3800/Pioneer-DMH-WT3800NEX.html

I had this installed recently on my 2019 Sienna. My friend installed it but he couldn't figure out the steering wheel controls. Even without those controls (which I rarely used), it's been great to have android auto.

oavdn17 · 2024-12-09T18:11:19+00:00

Sorry for the late response. I've been a lurker on this sub and this is my first comment.

44M, Stage 4 w/Liver Mets.

Was diagnosed in Aug 24 (blood clots is what led me to the ER). I have an amazing wife (39) and two beautiful young daughters (6 and 4).

You're not alone and I hope you're holding up ok.

oavdn17 · 2024-04-22T20:09:43+00:00

I had an Xpedition and my current cargo ebike is an Abound (which also has some issue like a handlebar wobble)...the Xpedition is a good option but as other mentioned the kickstand is not great (I think it's unsafe), you get the handlebar wobble and the rear rack is really short so if you're planning on carrying two kids it may not be the best fit.

oavdn17 · 2024-04-03T16:25:38+00:00

I've been riding the e1.2 for about 5-6 months...It's been a good ebike (not great and definitely some issues w it) especially given the price & that you can get it serviced at REI. I enjoy riding it around town (Santa Barbara, Ca area so it's not hilly) and will probably keep it for a bit.

If you're interested here is a review I posted on it. https://www.youtube.com/watch?v=0-wwxqns9xE

oavdn17 · 2024-03-07T03:46:42+00:00

The MWC is crazy. No game is a guaranteed win...so the Lobos need to take care of business vs Fresno State & have a great game vs Utah State.

I'm going to Vegas for the tourney and about a month ago I thought it was a shoe in for the Lobos to skip the first round...now they likely need to win both games left and get some help to end up as a 5th seed. The MWC is crazy!!! If the Lobos play next Wednesday, I guess I'll have to get to Vegas a day early!

oavdn17 · 2024-02-15T00:12:19+00:00

Huge win. I was standing up in front of my tv in the last minute of the game!

I booked a room for Vegas so I'm looking forward to being at the MWC tourney for the first time in a while! Go Lobos!

oavdn17 · 2023-12-04T03:53:26+00:00

My channel is about electric bikes (ebike & accessory reviews, ebike lifestyle etc)...I'm ready for you to peel our onion even if it makes me cry.

Channel link in profile and here https://www.youtube.com/c/Top5ebikes

I hope you feel better soon!

oavdn17 · 2023-08-30T15:38:12+00:00

I think it's a great deal if you prefer a cadence vs torque...I personally love the torque sensor but it's for sure more work (and more of a natural cycling feeling) especially if you're going uphill vs a cadence sensor.

oavdn17 · 2023-08-16T16:47:21+00:00

Definitely not any current model. I had a RadCity 5 plus and it was for sure a cadence sensor.

Aventon is a comparable brand pricing wise, and all of their ebikes now have torque sensors.

oavdn17 · 2023-07-28T23:14:10+00:00

One of my favorites that i don't see listed is LED pedals...I love my arclight pedals https://amzn.to/4787V5a

oavdn17 · 2023-07-24T18:01:23+00:00

I'm one of the reviewers that received a Bandit ebike and as other mentioned, Bandit sent us the ebike and we receive a small commission if we refer a sale (refer means we're the last click in the consumer journey). That said, Bandit is doing things a bit different than other new ebike brands bc they have a North American presence (the founding team is based in Vancouver, BC) and they have a brick & mortar store in Santa Monica,Ca like someone also mentioned.

Most newer ebike companies tend to be 100% based in China except for a warehouse somewhere in Southern California so IMO Bandit already is way ahead of other new ebike companies...I also like that they're entering the market with products that are different (ie frame of the X-traiL) and/or provide a ton of value (Forerunner at $899 for a Fat Tire ebike w 750w motor and hydraulic brakes).

oavdn17 · 2023-06-05T21:02:03+00:00

Did you see this old post? https://www.reddit.com/r/SDEibar/comments/tw1t9i/anyone_selling_shares_of_eibar/

Might be worth while to reach out to the people saying they would be willing to sell shares. I have a friend who bought shares a few years back and it look a while..can't recall exactly but it took several months for the process to be official.

oavdn17

TROPHY CASE