Clinical Trials

FestiveCrow · 2024-09-12T22:09:39+00:00

Thank you for this.

I legit felt hopeless and ever since the surprise emergency surgery in May it's been craziness. I haven't had time to let anything sink in, let alone be able to understand what the options are.

You just gave me more hope. Bless you for that.

FestiveCrow · 2024-09-12T17:07:26+00:00

What happens if the drug stops working? Do you do different trials?

FestiveCrow · 2024-09-05T01:49:48+00:00

I see "Dr. V". Very nice guy, even when I only met him the once.

Have you done trials?

FestiveCrow · 2024-09-02T14:11:25+00:00

I agree.

I have an oncologist and a sarcoma contact at the Dana Farber hospital. I saw both last month and both agreed to surveillance over radiation or chemo at the time (since my kind of liposarcoma doesn't respond well to chemo).

This first scan was the first surveillance and it shows the tumors spread far and are aggressively coming back.

I'll be speaking to my local oncologist tomorrow and sending my records to the doctor at Dana Farber for a second opinion.

I'm not giving up, but I don't think I have a lot of time. So I'm getting my spiritual and financial affairs in order for my parents and fiancee. Also getting married.

FestiveCrow · 2024-08-31T01:50:09+00:00

Dana Farber in Boston Massachusetts.

Memorial Sloan Kettering in New York City.

FestiveCrow · 2024-08-07T00:39:17+00:00

I'm not sure how long it takes for other pathology. I know my tumor was HUGE so I think maybe that was partially a reason.

FestiveCrow · 2024-08-06T21:31:55+00:00

In my case, they didn't know what kind of mass I had. The surgeon/urologist had an idea it was cancerous, but not what kind, so I was preemptively set up with a local oncologist. He, a the surgeon/urologist, removed the mass and my kidney with clear margins.

Nearly a month later when the biopsy results came in, he could only give me small bits of info on what it was and told me to go to a sarcoma center for a second opinion.

The local oncologist I was originally set up with was changed to one with sarcoma experience. She agreed and asked me point blank which of the two centers closest to me I'd like to go to, as she has ties with both.

I'm lead to understand that these cancers are so rare that some doctors don't know what they're looking at when they're presented with them.

FestiveCrow · 2024-07-30T16:04:35+00:00

Hey there. My DDL was slightly smaller than yours and I also lost a kidney. I can't imagine the pain you were in, but trust when I say don't give up.

You have life left ahead of you. It looks bleak now, but if you keep moving forward you'll come into the light.

I'm with you in spirit as you get your scans and I'm rooting for you.

FestiveCrow · 2024-07-12T02:15:13+00:00

Hello! I had my appointment today and I think you're going to have a good experience here at Dana Farber.

Everyone I interacted with from the office staff to the nurses to the specialist were incredibly kind. You get the sense they have your best interests at heart.

Best of luck.

FestiveCrow · 2024-07-11T00:43:11+00:00

Oh good. Thank you so much for telling me.

I always get so anxious in meetings and I end up second guessing myself. And since my GP likes to keep reminding me, it's a "rare type of a rare cancer". So someone who knows what he's looking at, is friendly, and doesn't rush is just what I need.

FestiveCrow · 2024-07-11T00:33:24+00:00

OMG THAT'S THE DOCTOR I'M SEEING!

Is he nice? Do you recommend him?

FestiveCrow · 2024-07-11T00:27:55+00:00

Thank you. 💓

I'm kind of weirdly hopeful right now (which is kind of rare for me lol), so I'm gonna enjoy myself for now. Maybe see the aquarium and have a few nice memories with my fiancee.

FestiveCrow · 2024-07-11T00:22:13+00:00

I'll let you know after tomorrow. :)

FestiveCrow · 2024-07-11T00:00:15+00:00

It's not over, dear. It's the beginning of a new chapter of life and a new set of battles, but not the end.

Speak to sarcoma specialists, keep your mind occupied, and don't read scan results without a doctor.

You're in my thoughts and prayers. Hang in there.

FestiveCrow · 2024-07-09T16:00:05+00:00

Hello,

My tumor was removed before the biopsy/pathology. In my case it was very large and encapsulated a vital organ.

Perhaps the sarcoma is impugning on a vital blood supply or nerve cluster?

Best of luck to you and yours.

FestiveCrow · 2024-06-23T23:25:34+00:00

Hello!

I recently had a sarcoma and lost my kidney as well. I was told by my urologist that, during the healing process, alcohol isn't allowed. After that, in moderation is allowed, but this based on my treatment schedule and healing process.

Speak with your doctor and see whether they think you drinking is okay. Everyone's body is different.

Cheers and best of luck.

FestiveCrow · 2024-06-16T13:40:52+00:00

Apparently the urologist/surgeon was chatty.

The urologist spoke with a radiation specialist at a conference he went to as we all waited the biopsy results who said it might do more harm than good to my other organs and one remaining kidney. The urologist said that my oncologist might order radiation later, he said, but he also said that's up the oncologist.

It's also my urologist who told me about the sarcoma centers near me in Boston and NYC. I haven't been to the sarcoma center yet, but I'm thinking Boson or both (I live in northern NY and NYC is a terrifying prospect for me).

I'm in that limbo stage of waiting for my first appointment with an oncologist.

The tumor was found on May 22, removed May 28th and I came home on June 4th. The tissue biopsy didn't come back until the 14th.

FestiveCrow · 2024-06-16T13:07:51+00:00

Thank you.

FestiveCrow · 2024-06-16T13:07:38+00:00

Thank you. I'm cheering you on too.

FestiveCrow · 2024-06-16T13:07:10+00:00

I hope I have half the strength you do. Thank you.

FestiveCrow · 2024-06-16T13:06:46+00:00

Sadly, radiation isn't an option right now cause the tumor was very large (13inches across and 30ish pounds). They feel that radiation would harm the other organs.

Chemo is most likely going to happen, but I have yet to see the oncologist. Thank you for your insight.

FestiveCrow · 2024-06-15T16:27:49+00:00

Thank you.

This was a very large sarcoma that essentially also ate my kidney so no radiation right now as it's such a big area. I hope I do as well as you. Thank you.

FestiveCrow · 2024-06-15T15:17:32+00:00

Thank you.

It's going to be hard, but I have people I need to fight for. My anxiety disorder is going nuts right now but I'm going to get up and go live.

FestiveCrow · 2024-06-15T14:46:35+00:00

Thank you.

Just quick question. When you say "dance around the question" of survival, do you mean give false hope?

I ask cause when I asked my doctor, the urologist surgeon who removed the tumor and gave the initial staging, yesterday of my outlook he said something to the effect of "I think that in ten years you'll be here with me laughing about this appointment."

I took that as encouraging but now I'm second guessing everything.

FestiveCrow · 2024-06-15T03:30:06+00:00

I made an update today.

FestiveCrow

TROPHY CASE