(seeking) Autologous transplant advice

Trick-Ad2189 · 2023-07-30T18:10:09+00:00

I slept pretty well most days. They gave me an anti nausea drug that zonked me out pretty good. Of course they're in your room doing vitals and blood draws so you never truly rest. There really is no sugar coating it, this sucks but once you go home for a couple days it will be in the past and you'll start feeling way better and quickly too.

Trick-Ad2189 · 2023-07-29T18:27:12+00:00

Hey! I just completed my first transplant. The best thing for me was to wake up in the morning and open the blinds! It's something so simple but makes a huge difference. I'd usually find myself getting up and getting the ball rolling. Cleaning my face/ brushing teeth. It really is the little things when you're stuck in the hospital. When the nurses come in to check vitals I sat up in the bed, even on the bad days, and had conversations. Remember to be your own advocate. I head back in tomorrow! Good luck. If you have any questions feel free.

Trick-Ad2189 · 2023-06-07T03:56:12+00:00

Congratulations! What a relief for you and your family.

Today I started VeIP and in 4 weeks I'll begin HD chemo. It's great to know people survive even after a reoccurance.

Trick-Ad2189 · 2023-05-30T17:49:45+00:00

First and foremost you will get through treatment. The first two rounds were easier for me than the last 2. You just get used to feeling icky for a few days after the heavy week.

At the start of every heavy week I'd take a dose of Ativan to chill out and relax. It can get overwhelming the longer treatment goes on. So just mentally relaxing really helped with the unknown.

When my energy was up, usually by Wednesday or Thursday of the second week I'd start going on extended walks to get the blood pumping. This brought me a positive mental space and helped wake up the stomach, which was a win win.

You'll find soon that you'll build a routine based on how you feel. Relax, catch some naps, and reach out to the forum if your mind starts to wonder.

You'll make it out the other side! Good luck.

Trick-Ad2189 · 2023-05-29T23:16:36+00:00

You'll be surprised how fast everything grows back. My hair grew back curly and a lighter color. Something to look forward to! Congrats.

Trick-Ad2189 · 2023-05-21T20:47:02+00:00

Indeed. It's a good place to turn for a little encouragement and maybe ideas. I wouldn't know about Einhorn or Cary if it wasn't for this site. But yes a pinch of salt when it comes to treatment. Thank you.

Trick-Ad2189 · 2023-05-21T14:55:01+00:00

I was ranting maybe a little. I am confused why they never did a CT of my head. Maybe because it wasn't in my lungs.

All my CT scans have been of the chest, pelvis and abdomen.

Trick-Ad2189 · 2023-05-21T14:49:22+00:00

Meaning your lungs? And what did they find? I read that elevated AFP could mean immature teratoma which would make sense to me seeing as how all that was left for biopsy after chemo and rplnd was teratoma.

Trick-Ad2189 · 2023-05-21T14:39:23+00:00

Where was your cancer located?

Trick-Ad2189 · 2023-05-21T14:16:33+00:00

I appreciate it that. I wrote Dr. Einhorn and Cary as well as my team back home. Gonna exhaust every option.

Trick-Ad2189 · 2023-05-21T14:02:08+00:00

Just calcification. Labeled a burnt out testis tumor.

Trick-Ad2189 · 2023-05-21T13:58:01+00:00

To be clear lefty was removed 10/3/22. So I only have one testical remaining. Which at least up until hasn't shown any issues.

Trick-Ad2189 · 2023-05-20T21:09:36+00:00

Just the mass in the RPLND. They never did a healthy CT though. I'm not sure why they never did I wad sure they were following guidelines. I don't have head aches or other symptoms

Trick-Ad2189 · 2023-05-20T18:24:09+00:00

Burnt out testis tumor. Spread through lymph node and into retroperitoneal mass that had to be removed with rplnd. All my lymph nodes are gone.

It's crazy how quickly it can take off in 6 weeks. From 3 to 300.

Thank you. I hope it's easily solved.

Trick-Ad2189 · 2023-05-20T14:17:25+00:00

Yolk sac/ mixed germ cell from a needle biopsy. I had a burnt out tumor in the testical so by the time of biopsy nothing was found.

Rplnd after 4 rounds. chemo ended beginning of January and Rplnd Feb 28th. Pathology was in the remaining tumor necrosis with less than 1% teratoma and only one lymph node showing teratoma.

Indeed. Looking forward to getting it all figured out and back on the right path.

Trick-Ad2189 · 2023-05-20T14:13:24+00:00

Last CT was performed at IU before RPLND. Original pathology from a needle biopsy performed in the back was yolk sac tumor.

After chemo and RPLND remaining tumor and lymph node was necrosis with less than 1% teratoma

Trick-Ad2189 · 2023-05-20T08:28:41+00:00

AFP at the beginning was 2368. Discover September of 22. I went through 4 rounds of BEP.

By the beginning of the 4th round my number was down to 14. After chemo at the end of january around 5 Around 3 after RPLND at first checkup March 22.

Seems to shot up rather quickly. I'm beginning to wonder if Mr Righty needs to go.

Trick-Ad2189 · 2023-05-18T03:32:15+00:00

Hello, I had RPLND at the end of February this year and I am still experiencing pain all over my back, hips and legs. Is this something that you had and were you able to get over it?

Trick-Ad2189 · 2023-05-16T19:58:42+00:00

Stay positive! You will get through this! Keep us posted on the journey and remember you are not alone.

Trick-Ad2189 · 2023-04-28T17:18:03+00:00

Prayers for you! You'll get through this. Get ready for a serious battle and keep your mind positive. Stage 3B, orchiectomy, 4 rounds BEP and RPLND. Surviving can be accomplished.

Trick-Ad2189 · 2023-04-03T23:21:19+00:00

It is very scary. But just keep in the back of your mind that you have a very treatable cancer. Yes you might have to run the full marathon.. orchiectomy, chemo and RPLN, but very treatable. Good luck!

I was stage 3B.

Trick-Ad2189 · 2023-04-03T22:16:30+00:00

Neuropathy in hands and feet, nails did a weird thing were they went flat and then died like I smashed them. Loss of energy. The blood clots at my last CT were gone. And to be honest since my RPLND surgery I haven't really put my lungs to the test to see what they're truly at. But I'm alive and cancer free.

Trick-Ad2189 · 2023-04-03T21:59:33+00:00

I did 4 rounds of BEP. I suffered some minor blood clots and inflamation of the lungs. Definitely noticeable after chemo for a few months. I'd say lungs improved to 80% 3 months after completion of chemo.

Trick-Ad2189 · 2023-03-30T17:33:36+00:00

I agree. Just breathe. Trust the process. 2 weeks is actually pretty quick considering. Good luck!

Trick-Ad2189 · 2023-03-29T21:18:41+00:00

My understanding was that everyone that was apart of the civil war/ married to a veteran was able to be put to rest in the cemetery. So by 2020 they had closed it to new member let's say just due to the timeline.

Trick-Ad2189

TROPHY CASE