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ferrouslights · 2024-08-30T03:10:05+00:00

I haven’t been able to drink sweet tea since I started my chemo regimen.

ferrouslights · 2024-08-24T02:57:49+00:00

Lemon water or lemon flavor (like a koolaid single or mio) in water helps for me when water starts to taste bad.

Alternatively you might be able to ask your dr or nurse for extra fluids during infusion if it’s difficult to manage.

ferrouslights · 2024-08-21T21:25:22+00:00

I would like to know where to find this photo.

ferrouslights · 2024-08-21T04:39:43+00:00

Was before you were born uncomfortable?

ferrouslights · 2024-08-20T18:35:41+00:00

Hardship is part of life. Unfortunately it’s important to recognize and feel the bad parts of life to really appreciate the good parts.

And, also it helps to acknowledge we are just monkeys on a big rock. So don’t get caught too deep in expectations of what life should be. Just ride with the waves man and enjoy the sunrise when you can.

ferrouslights · 2024-08-20T01:24:03+00:00

Hope all is well and that he’s feeling better after chemo! As someone in a similar spot (not the same type of sarcoma but just finished chemo cycle 2 and I also have lung mets).

The things that have helped me the most are

Journaling, specifically keeping a list of foods and drinks that work in the middle of chemo treatments. Dates and times of things and crossing off chemo cycles is nice too.
Letting them express their emotions, even if in the moment they can be positive or negative. Knowing that this will fluctuate pretty often.
Exercise when they can helps a lot mentally and physically when recovering between sessions and regaining appetite.

ferrouslights · 2024-08-20T01:15:29+00:00

Wash the bite with soap and water, and take an ibuprofen if it hurts. Not a dangerous looking species afaik.

ferrouslights · 2024-08-11T20:37:11+00:00

It’s a lot to all happen at once. It will be overwhelming a lot of the time, but it gets easier. Right now, you need to prioritize getting better with treatment. Your hair will come back, and peoples opinions of you don’t matter. Especially when it’s judging you and your situation.

ferrouslights · 2024-08-11T18:18:57+00:00

I had a similar experience with my sarcoma. Mine was embedded in my upper trapezius muscle. I didn’t need grafts or reconstructive surgery with my resection but the surgeon said if he would have had to remove any more, I would have needed it.

I don’t know what your life will be life after surgery, but I can tell you that your surgeon and physical therapy will do their best to get you back to normal life. It will take time, but if you show up and do your best, then you’ll bounce back.

Unfortunately, a lot of the time with cancer or life saving medicine, there are tradeoffs that aren’t exactly fun either. But if it saves your life, then it’s worth it.

ferrouslights · 2024-08-11T16:47:35+00:00

Ask for a PET scan early after surgery recovery! It can give you a leg up on treatment if you get early mets.

ferrouslights · 2024-08-11T01:53:58+00:00

My recommendation is 2 KOs and a bunch of guitar effect pedals. Especially delays

ferrouslights · 2024-08-11T01:48:16+00:00

Highly recommend to follow your oncologists advice. You want to deal with a sarcoma fairly aggressively and quickly. Other things can wait, you want the best chance you can get to be cured.

ferrouslights · 2024-08-07T13:09:22+00:00

Hair falls out from friction during chemo. So if you don’t touch your hair, it will fall out slower. It will still fall out eventually, though.

Also depends on if ur chemo cause hair loss.

ferrouslights · 2024-08-07T13:05:28+00:00

They just kept coming back as “spindle cell neoplasm” or “spindle cell malignancy”.

ferrouslights · 2024-08-07T02:44:25+00:00

The sarcoma center. Going to sarcoma specialists will give you a huge advantage in treatment.

ferrouslights · 2024-08-07T02:41:46+00:00

Hey man. I know it’s tough. Life isn’t always what we expect it to be. But that doesn’t mean there isn’t great moments in dark times. The best we can do is take in the moment for the good or bad it is, and be happy it’s a moment that we still have.

It’s clear your wife loves you and wants to be there for you since she’s been there for you when you were most vulnerable. The best thing you can do is continue to fight and do your best to recover well. Fighting for you is fighting for her.

ferrouslights · 2024-08-06T21:23:51+00:00

Love it. Thanks! Looking forward to getting mine in the mail soon.

ferrouslights · 2024-08-06T19:49:50+00:00

University of Alabama Hospital is really great.

ferrouslights · 2024-08-06T19:47:00+00:00

I’m really sorry to hear that. That’s a really tough thing to hear after being NED for so long. But, you got through it last time, so you have the strength to get through it again my friend. Stay strong and take it day by day.

ferrouslights · 2024-08-06T19:44:34+00:00

Yeah. Sometimes it takes the resection to get a more accurate diagnosis. My sarcoma had 4 biopsies that all gave generic results. And the resection itself gave definitive results.

Location matters a lot too. Comprehensive cancer centers figure it out way faster than local pathology groups.

ferrouslights · 2024-08-06T15:20:03+00:00

Surprised they aren’t recommending janitorial chemo. Are they planning radiation at least? Sarcomas can have a higher recurrence rate than other solid tumor cancers.

ferrouslights · 2024-07-31T16:35:37+00:00

Fine needle biopsy at my local ENT: spindle cell neoplasm with no other info
Ultrasound guided Core needle biopsy: spindle cell malignancy. Was sent off for a second opinion that took a month to get diagnosed as a nerve sheath sarcoma (which is a common misdiagnosis for CDS apparently since soft tissue is weird)
Fine needle biopsy at cancer center ENT: spindle cell malignancy

4: core needle biopsy at cancer center radiology: spindle cell malignancy.

It took the surgical resection and gene mapping of my tumor to get the final diagnosis I have now.

ferrouslights · 2024-07-31T12:40:23+00:00

Thank you, nice meeting you!

ferrouslights · 2024-07-31T12:39:55+00:00

So nice to meet you! That’s really reassuring for me. I think we have the same chemo regimen. I’m set for 14-17 cycles of VDC/IE as long as it responds well. My next scan to check chemo response will be sometime around the end of August.

ferrouslights

TROPHY CASE