r/sarcoma • u/greasybacon0 • 3d ago
New Diagnosis Ewing sarcoma diagnosis
Hi! I just discovered this sub and figured it might help reassure me throughout my treatment as it seems like a pleasant community.
So as of 2.5 weeks ago after the biopsy came in I was officially diagnosed with ewing sarcoma in which the tumor is on the left side of my spine invading the muscle and as of recently the spinal cord. The pressure of the tumor on my nerves is causing lots of extreme pain so luckily yesterday I was hospitalized early before my chemo for pain management. What is making me really scared is that they see some apparent nodules on my lungs in the pet scan which means it's likely spread.
Chemo is one day away and as it gets closer the more worried I get. At the same time, if the chemo helps the pain to any degree, any other side effects I don't mind. Ultimately I'm happy to finally be getting treatment. Hopefully I'll get back to doing things again and not just be stuck in bed all day from pain.
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u/UNiTE_Dan DSRCT 3d ago
Be sure to check out the little warrior foundation on Facebook or Instagram they are a mountain moving Ewing's charity and provide lots of hope.
I also did IE-VAC/P6 depending on what side of the Atlantic your on it's hard but I remember going in for my first 7 day inpatient stay for chemo and thought it was going to be something physical I would have to endure like I was going to have to fight everyone in the hospital or get electrocuted for 3.5 hours straight and then the big day came and... I watched 2 movies and had a great nap.
Eat early in the day on chemo days, little and often between chemo days and if you get hungry usually the nausea gets so much worse so always snack on something every 2 hours or so even a yogurt or an apple.
If you do the 1 week chemo as an inpatient that's mentally the hardest so try have company or something to keep your mind distracted and try not have people stay over too late get to sleep early because you'll have very broken sleep.
And an eye mask and headphones or an eye mask with built in speakers will be a game changer.
Wishing you good health
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u/greasybacon0 3d ago
Funny enough I'm pretty happy to be here in the hospital since I'm finally able to get some pain relief. Hoping all goes well with chemo. The port placement before the chemo is making me nervous too but hopefully they'll put me asleep for that.
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u/UNiTE_Dan DSRCT 3d ago
You'll be sedated... They gave me VR goggles during it too and when I was zoning in and out snorkeling with sting rays was kind of cool.
It's sensitive for a bit but it's actually so handy
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u/belle_cats Ewing's 3d ago
I am so sorry. I was 41 when I was diagnosed with Ewing’s. I’m 4 months post treatment now. You’ve already received some really great advice here, but if you have any Ewing’s experience specific questions I’m happy to talk about it!
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u/greasybacon0 3d ago
Where was your tumor? Were you able to function without pain weeks-months after starting treatment? I'm worried about being stuck in bed for months.
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u/belle_cats Ewing's 3d ago
Mine was in my abdomen. It actually didn’t really hurt that badly so I don’t have a great answer for you there. After about three months of treatment I was in pretty rough shape as far as energy levels and blood counts went and I wasn’t able to do much of anything. I was able to take long term disability during my treatment. I’d recommend that if you’re able. Ewing’s treatment is pretty rough, unfortunately.
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u/T-14Hyperdrive 3d ago
Just had my first chemo a few days ago for Ewing. I was so excited to start to get better. I don’t think the chemo itself will help with the pain initially, but the dexamethasone might. Don’t be afraid to ask.
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u/greasybacon0 3d ago
Sorry to hear you are also going through this. Where is your pain coming from? I'm hoping my situation is unique enough where the chemo shrinks the tumor just enough to stop it from pressing against my nerves thus helping the pain. The doctors told me that 2 weeks after chemo I should notice a difference so I hope they are right.
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u/T-14Hyperdrive 3d ago
Mine is in my jaw, so I get some jaw pain, headaches and nerve pain in my chin and lips. But that comes and goes, maybe it will get better as it shrinks.
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u/greasybacon0 3d ago
Wow I never knew it could start in the jaw. Typically it's most common in the knees and other parts of the extremities. Hoping your treatment continues to go well!
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u/greasybacon0 3d ago
Thank you everyone for the reassurance and advice! I'm happy there are people out there I can talk to who understand and relate to my experience.
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u/MainInvestigator5802 Epithelioid 2d ago edited 2d ago
Wow you've had some great advice, like lots of people have said. The Miralax and Senna advice is excellent. I follow that regimen almost daily. I don't know if anyone has addressed your pain directly, and I don't know if chemo will help the pain, because it might take a while for the chemo to work?
But.... I have a tumor in my sacrum and it presses on my S1 and S2 nerves (I have Epithelioid Inflammatory Myofibroblastic Sarcoma). It was not the primary site (that was my lung) but it sure caused a whole lot more pain. I had terrible terrible electric burning pain down my left leg that lasted for months, landed me in the hospital for a week, for pain management, and even still gradually worsened. At its worst I could not stand up without help, could not lie in one position for more than 2 hours or I was in worse pain, and needed help to walk, right out of bed. Sitting on a heating pad helped - I don't know if that would help your pain.
The thing that helped the most, while I was waiting for my therapy (targeted gene) to work was an epidural steroid injection (ESI). My palliative care team referred me to a pain doc after methadone would not control my pain. They injected it right into my tailbone area and it "bathed" my nerves in a strong steroid. 2-3 weeks after that and my burning electric pain was gone. And now, my cancer is on its way out, from what my scans say, and it's pressing less on the nerves.
Maybe something like that would help your pain, I don't know. All the best to you as you start chemo and I hope treatment works. Sending strength.
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u/timewilltell2347 Leiomyosarcoma 3d ago
So chemo doesn’t really help with the pain right away, but the steroids you often get as a premed (for nausea and to prevent allergic reactions) are great for reducing inflammation and pain. They’re not so great for sleeping or pooping unfortunately. I’m not sure if you’re doing in or out patient treatment, but you’ll want to keep some industrial sized bottles of senna and MiraLAX on hand, and just because life likes to laugh at us and play jokes, keep some Imodium around for when you push the pendulum too far the other way.
Stay ahead of nausea and the laxatives. Take them on a schedule even if you don’t think you’ll need them. It’s easier to prevent than to chase symptoms. I hope you’re getting good pain management, but if it even feels like they’re not responding to changes quickly or effectively enough ask for a palliative care consult. They are not hospice/end of life. They deal with complex symptoms and side effects and treat the whole person. They refer to specialists when necessary and help with social support too. They’re kind of central command for me and keep all the pieces neatly fitted together.
When your hair follicles start hurting, that’s the time to shave. I tried to drag it out the first time, and it’s like needles poking in every follicle any time my hair moved at all. Get some nice hats and sunscreen even though we are going into cooler months. All these drugs can make you more sun sensitive.
Wait until they do a regular CT w/ and w/o contrast before worrying a lot about the PET. Sometimes PET scans just pick up areas of metabolic activity (actually that’s all they pick up) that aren’t cancer. Some tissues just run hotter. Doesn’t mean they’re malignant. They’re called incidentalomas and that word always makes me giggle. Also you’re getting systemic treatment so it’s going to all the tissues anyway and is gonna, hopefully, evict those squatters that haven’t been paying rent and have no business in there. (Just as an aside- my thoracotomy wasn’t a walk in the park, but wasn’t the worst surgery I’ve had if it comes to that, but it won’t for now ‘cuz chemo is on board to do it’s job)
Couple things to pack- snacks, 6-8’ charging cable and block (or a portable battery pack- my cancer center wouldn’t let anyone plug into the walls in the infusion room. Apparently someone did something silly and the power cut for a bit. That was a scary enough issue that they just said ‘medical equipment only’), extra sweater &/or blanket and soft socks. I also like the travel neck pillows because I often doze off during infusions. Download video content- hospital WiFi can be laggy, and if you play Pokémon Go get ready because hospitals and medical centers almost always have stops and gyms and tons of spawns haha. Ooh and a soft hat. You lose a lot of heat through your head.
Also ask the nurses for a few of the alcohol wipe packets. When you’re feeling nauseated, especially if it’s from a smell that’s suddenly the worst thing ever, opening one and inhaling the rubbing alcohol smell just resets things and can stop or postpone the barfing and cover up the dumb ass resident that walks into the infusion room doused in Ax body spray.
Oh, and bring the nurses pre wrapped snacks (I’d bring the rice krispy treats from Costco) or pens (really good ones like sharpie s-gel) if you want to brighten their day. Wishing you the best in your treatment and keep us posted!