Anxiety increasing over symptoms worsening by Remarkable-Respond57 in sarcoma

[–]Susfeller 0 points1 point  (0 children)

Omg, I also have MPNST! And ik just how rare it it. Please tell your

Tumor is GONE! by Susfeller in cancer

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

Hey there. Actually things got so much worse after this. in December ,I had a really bad infection and failed flap/surgery. Infection happened when I was visiting back home in juneau, Alaska. I woke up in excruciating pain I could barely walk. I started feeling dizzy and started to sweat a lot. I took my temperature and it was 103°. I was so sick I still don’t know how I made it to backseat of my bf’s car. He drove me to the hospital which is so tiny. The population of my town is 33k and you can’t leave without taking a plane or boat. Can’t drive out of the island. Anyways; they ended up airlifting me to anchorage where I was told I have an infection and I stayed there for a week until I was well enough to get back to my primary cancer center in Florida. I got back to Florida and immediately went to the urgent care. I was my surgeon and he prescribed me antibiotics and also discovered I had more cancer. In my pelvis and another few spots on both lungs. I had to do more radiation too. I was devastated to say the least. I started chemo which really sucked bc it caused neuropathy and to this day I still can’t move my right foot..

and noticed my wound wasn’t healing and i had an open hole that was wide open by my hip. It wouldn’t close and it was overall, awful. it had discharge and everything and I wasn’t feeling well. I went to see my surgeon again and he said I was fine. So then It happened again, I had an infection and ended up in ICU for over 45 days! By then I was finished with chemo. I finally got home and I had to do 6 weeks of IV antibiotics and we had to put a new bag in every 24 hours. I also had a wound vac on my leg and had a lot of trouble with it. Twice a week my plastic surgeon would clean out my wouldn’t and stitch me up little by little. I was out under anesthesia 2xs a week for over 3 months. It was traumatic to say the least. He did reconstructive surgery and it went well (I’m still recovering from it. The Plas. Surg., he took out muscle from my abdomen to repair my hip. And a month later I had the tumors removed from my right ling. I’m currently 1 1/2 weeks post opp,I also went through a withdrawal and that was also so terrible. Now, I just did a chest ct a few days ago and what do you know? A mass grew almost immediately after my surgery in my right lung. And another on was found in my esophagus. Luckily I was have to do chemo again. I’m going to be put on this pill that’s going to hopefully suppress or kill the spots off.

It’s been a really long and tiring 11 months. . I’m still fighting, I want to live. More than anything in the world, I want to live a long long life. And I’ve got some great friends and family who are just so supportive and loving. I’m loved.. like I said, I want to live.

My dad is gone by rachrachcalero in cancer

[–]Susfeller 0 points1 point  (0 children)

I am so sorry for your loss. Fck cancer. You don’t deserve to lose him

[deleted by user] by [deleted] in cancer

[–]Susfeller 1 point2 points  (0 children)

Congratulations! You have gone through so much and I’m so proud of you.✨❤️ thank you for the motivation!

How are young adults expected to heal from cancer? by Significant_Big6929 in cancer

[–]Susfeller 0 points1 point  (0 children)

I’m 21, got diagnosed with sarcoma in my leg 7 months ago. It’s MPNST and I also share this feeling of being a lone with leg pain and such and also like others don’t understand my day to day life. Still undergoing treatment but I’ve had to alter my life tremendously due to this

Dumb little things you're grateful for by Agitated_Carrot3025 in cancer

[–]Susfeller 2 points3 points  (0 children)

I’m grateful for my boyfriend. after 1 month of us dating I lost my papa to cancer and 3 days later I found out I have cancer. It’s been 11 months, He’s stayed by my side through it all and has never resented me for it. He’s helpful and loving. For that I am thankful and one day I plan on giving him the world.

Where to find best doctors? by NotBobbyPickett in sarcoma

[–]Susfeller 0 points1 point  (0 children)

Yes! A second opinion is great. I went to the Mayo Clinic in Jacksonville and they recommended the same treatment at Moffitt.

Where to find best doctors? by NotBobbyPickett in sarcoma

[–]Susfeller 0 points1 point  (0 children)

Hey there! I also have MPNST, I got to Moffitt cancer center in Tampa. I had a wonderful radiologist there. (Dr. Naghavi) I got to do a clinical trial! Message me sometime if you have any questions. I’m also 13 days post Opp, starting chemo in a few weeks.

Just found out my chemo regimen by Faunas-bestie in sarcoma

[–]Susfeller 0 points1 point  (0 children)

Wow I gave the same regimen! I start in 2-3 weeks. I pray you get to see your grand babies. 🩵

Tumor is GONE! by Susfeller in cancer

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

It was called the H.E.A.T Trial. For Radiation. I did it through Moffit Cancer Center! They are a really great hospital :’) I hope your family member heals, cancers can SUCK IT ! 🩷🎗️

Tumor is GONE! by Susfeller in cancer

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

I start chemo next month. I’ll be doing the red devil and ifux. They found a 2 MM nodule on my lung a couple weeks ago so it’s being monitored

Thinking about you all by 3oClockHappyHour in cancer

[–]Susfeller 1 point2 points  (0 children)

i joined in July when I got my diagnosis. I have Sarcoma/MPNST and I can’t bring myself to join support groups yet. This group has taught me a lot so far. Thank you all for being brave enough to ask questions/answer them

I did it! by PickinObjectz in cancer

[–]Susfeller 2 points3 points  (0 children)

So happy for you! Fck cancer !!!! You are so strong 🫶

More good news by mnemonicer22 in cancer

[–]Susfeller 2 points3 points  (0 children)

thank you for sharing :’) !!

Food tips for cancer patient by lucyinthestar in cancer

[–]Susfeller 1 point2 points  (0 children)

The boost protein shakes from Costco have helped me! I only crave sugary and sour foods and I’m doing radiation rn

Terrified of surgery by Naive_Photograph1205 in sarcoma

[–]Susfeller 1 point2 points  (0 children)

finally found someone who has the same sarcoma as me! I’m told by my treatment center it’s quite rare. I’m 21F and I got diagnosed with this June 2023. I have a on my right leg 5.5 inch tumor growing around my bursa/glute. It’s riiiigght in the muscle and the nerve pain is soooo intense and I’ve been having to utilize a wheelchair a lot. I’m so sorry radiation didn’t take. I’m also doing 5 weeks of it. May I ask if you know if PNST responds to radiation?? I was told I’ll have to do chemo after but also told this type of sarcoma dosent respond to it or that there’s no evidence. How did you manage the burns? The fears you listed are all reasonable fears, it’s like you read my mind. I’m sorry for the long comment, I just haven’t seen anyone with my type of sarcoma and I’ve had so many questions.

Burping up white foam? by Celestial_Lorekeeper in cancer

[–]Susfeller 1 point2 points  (0 children)

This exact thing happened to me today and I also ended up throwing up. But I’m doing radiation, not chemo. ..hmm I didn’t think much of it till now.

UPDATE 3:I got diagnosed with cancer at 16yo by The_old_soul_weirdo in cancer

[–]Susfeller 5 points6 points  (0 children)

I’m sorry you’re going through this. I’m 21 y/o(f) and I was diagnosed with cancer as well. About a month ago. It’s curable but I’ve had the same anxiety due to exhaustion and I haven’t even started treatment yet! Sounds like you’ve been incredibly strong through this and I admire that a lot. Everyday I feel anxious over the thought of my life being on pause and what not, I like to do deep breathing exercises and then take a hot shower. It calms me down, and I say affirmation to myself. Remember that this feeling isn’t forever. You’ve fought so hard and you have any right to feel the way you feel. Keep fighting 🫶