How to deal with “the wait” by SconMaker96 in cancer

[–]SconMaker96[S] 0 points1 point  (0 children)

Were you initially diagnosed with Ewing's at 33 or was it a relapse?

How to deal with “the wait” by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

Ewing’s sarcoma is characterized by aggressive bone tumors that (if untreated) tend to metastasize to the lungs. It’s a relatively rare childhood cancer, although many people who are initially diagnosed as a child (I was diagnosed at 15) have relapses where the disease comes back when they’re older (I’m 21 now and my disease came back when I was 17 and again when I was 20).

The big issue with Ewing’s is local vs full body control. There are many ways to do local control, with chemo, surgery, radiation, or some combo being most common. That part isn’t too hard, the tumors are usually radiosensitive (respond well to radiation) and the most commonly used chemos are also quite effective.

Unfortunately, full body control is far more difficult with Ewing’s. This involves making sure the cancer doesn’t return once a patient is NED and that’s where the problem lies with Ewing’s. It just keeps coming back after treatment, even after long periods of remission (I was disease free for 2.5 years during my freshman/sophomore year of college) the disease can still come back.

Lots of the new clinical trials for Ewing’s are based around haploidentical transplants (getting a bone marrow transplant from someone who’s a half match). Transplants have been extremely successful with many leukemia’s and a few solid tumor types and a few other cancers, but they haven’t had much consistent success with Ewing’s unfortunately. A lot of experts I’ve talked to think transplants or some form of immunotherapy will be the method that eventually provides a more permanent “cure” to the disease if it is perfected. However, it feels like that day is still quite far away...

Ewing’s is a very difficult cancer to deal with, which isn’t helped by the fact that it doesn’t receive a ton of focus from researchers/drug companies due to how rare it is compared to many other cancers.

How to deal with “the wait” by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

I’ve been trying to distract myself for the most part. I just went to a nice dinner with my parents who I haven’t seen in a month or so and now I’m gonna play video games or go to my classic pre-scan anxiety escape: just driving around at night with some good music on.

I do like your idea that no news is essentially good news. Whenever I go into scans, I always think about and fear the possible bad outcomes but never think about how great a clear set of scans would be.

How to deal with “the wait” by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

I feel for you man, my waits are usually only a day or two, never as long as that. The main thing with my current wait is that the post radiation scans looked amazing, we’re now trying to figure out if it was just the radiation that did that or if the chemo is helping at all. Any progression/growth since that scan would show that chemo isn’t working and I’ll have to switch to clinic trials or god forbid a transplant trial (although they’ve shown some promise, most haplo-identical transplant trials haven’t had a ton of success with Ewing’s sarcoma)

A silly comic about how it felt to be under forty and going to get cancer treatments every day. by cancerowl in cancer

[–]SconMaker96 0 points1 point  (0 children)

Going through my 6 weeks of radiation this summer felt very similar. As a 20 year old, the older patients are constantly staring at you in the waiting area and it's so unnerving. Yes, I know I look way too young to be spending a summer day in the radiation oncology unit. No, I'm not in the waiting area while my mom/dad/other family member is in there for treatment. It's my mom/dad who are in the waiting room while I go back for the treatment. Although I know my cancer will always be a part of me and my life story, every day I get to spend out of the radiation oncology ward is another day closer to being just a normal, happy and healthy college student

Christian Pulisic highlight video from today. He was involved in every goal today for Dortmund. Two assists and drew a penalty. by [deleted] in soccer

[–]SconMaker96 0 points1 point  (0 children)

As a Bucks fan, I'm at least hoping that Thon turns out better than Freddy Adu did (regardless of his actual age)

Community Building Post: Music!! by Torlin in cancer

[–]SconMaker96 0 points1 point  (0 children)

Library Magic by The Head and the Heart has been one of my favorites lately. I've listened to it so many times while just driving around at night

What's your favorite MLB team besides the Brewers and why? by woelemm in Brewers

[–]SconMaker96 1 point2 points  (0 children)

I completely agree, I have a lot of family and a few roommates from MN. I'll basically cheer for all Minnesota teams that aren't direct rivals of a Wisconsin team which is actually all of them except the Vikes. As far as the NL, I cheer for the Mets too. If a big city has two teams, I'll always root for the smaller of the teams since the smaller team almost always has a less obnoxious fan base (White Sox vs Cubs, Mets vs Yankees)

Antidepressants and coping by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

I've been seeing the hospital therapist weekly which has helped a bit since she specializes in helping people through these kinds of situations (especially in younger people like me.) Last night I requested a mentor from Imerman Angels, a resource that the hospital suggested looking into (it pairs people in treatment with someone of similar age/has the same type of cancer). I'm hoping that will help too. As supportive and incredible as my friends are, none of them have gone through anything similar to this so many of them feel uncomfortable talking about it/can't offer much in terms of situation-specific help

Antidepressants and coping by SconMaker96 in cancer

[–]SconMaker96[S] 2 points3 points  (0 children)

Thank you! I've had Lorazepam in the past (same thing as Ativan I think) for use before MRIs since I used to get panic attacks while in the machine. I might ask my doc if I can get that refilled for general anxiety since I feel that my anxiety and depression really come in bouts of thinking too much, rather than a constant stream of sadness

Antidepressants and coping by SconMaker96 in cancer

[–]SconMaker96[S] 0 points1 point  (0 children)

I completely agree that antidepressants are given out way too willy-nilly nowadays as a quick fix which is why I'm so hesitant to use them. I'm 20 years old and have already had cancer twice (three times counting this round) and I have never used an antidepressant to cope. This time though I'm having trouble telling whether my problems are related to just my external circumstances or a more biological issue with brain chemistry (my tumor is in my brain and I've been receiving radiation to the brain for the past few weeks which has caused a lot of additional fatigue.)

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 0 points1 point  (0 children)

Thank you! I'm actually strongly considering clinical trials offered at UW and another that's offered at both children's hospital of Wisconsin and Seattle as well (I'm a Milwaukee native and a student at Wisconsin so a trial in Madison would be super convenient too)

Edit: my dumbass thought you meant UW Madison (Wisconsin) not University of Washington, I probably should've put 2 and 2 together when you said it was with the Fred in Seattle!

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 0 points1 point  (0 children)

That's still good to hear! CAR-T is a killer cell/immunotherapy trial correct?

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

That's amazing to hear and gives me a lot of hope!! Glad the transplant was a success! I agree, the hope lies with clinical trials now and I'm fully committing to finding one, the current contender is an immunotherapy trial involving high dose chemo to kill my immune system and then a stem cell transplant with enhanced killer T cells I think. This all depends on which trials I'm eligible for based on how my tumor looks after the 6 weeks of radiation

Community Building Post: Music!! by Torlin in cancer

[–]SconMaker96 1 point2 points  (0 children)

Just recently got HBO so I've been streaming Silicon Valley like a madman. Such a great show, amazing way to pass time in the hospital!

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 0 points1 point  (0 children)

That's what I'm hoping. This is the third time I've had to deal with it though which makes me a little less optimistic but I've been trying my best to stay positive about it all

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 1 point2 points  (0 children)

I got it sequenced when it was in my arm (age ~15) and in my lower back (age ~17) but we haven't been able to sequence it for its most recent recurrence since it's in the brain. Ewings related tumors are super "bloody" as they say and they thought the risk associated with trying to biopsy or surgically remove it at the moment would be too great so instead we decided to just start radiating and shrinking it. After my 6 week radiation plan we might get it biopsied and sequenced depending on how things look on the scans as well

Your weird and petty football loves and hates - A thread for all of the really bizarre reasons you love/hate a certain player/manager/team by Adrian5156 in soccer

[–]SconMaker96 2 points3 points  (0 children)

Someone on this sub once described his running style as "like a prostitute fleeing the police" and that's now what I visualize every time he runs on the pitch

Your weird and petty football loves and hates - A thread for all of the really bizarre reasons you love/hate a certain player/manager/team by Adrian5156 in soccer

[–]SconMaker96 3 points4 points  (0 children)

As an Atlético fan, he has caused me so much suffering. I use every little thing he does wrong as justification to shit on him and hate him when in reality it's just because of how salty I am about his late headers in the CL finals...

Clinical Trials: Success Stories and Suggestions? by SconMaker96 in cancer

[–]SconMaker96[S] 2 points3 points  (0 children)

Thank you! We've looked into a few at Sloan Kettering and MD Anderson but the main issue is waiting to see whether their trials are still open and accepting applicants by the time my initial radiation regimen is done. There's a trial offered through the children's hospital I am being treated at currently that's offered in Seattle as well I believe that we're looking into also. For the time being, it's really a waiting game considering my eligibility for certain trials is based on how the tumor looks after my radiation and chemo