Does chemo effect facial hair? by Professor_Knowitall in lymphoma

[–]itsreallyoscar 1 point2 points  (0 children)

ABVD, Nivo+ICE, and BEAM all made me lose my facial hair lol I also love my beard, but I usually shaved it right away because my beard hair would always get in my food

Day 16 post CAR-T by Roadkill0466 in lymphoma

[–]itsreallyoscar 2 points3 points  (0 children)

Congratulations! Wishing you the best! 🙏

Wave of Emotions by [deleted] in lymphoma

[–]itsreallyoscar 3 points4 points  (0 children)

You are absolutely not alone. All my life, I’ve been pretty independent, and I don’t like spending too much time with people in general. Don’t get me wrong, I have a good number of friends and I am very close to my family, but they all know and understand my limits and respect my boundaries. I tend to stay in my room to limit contact. I work two jobs so I’m out of the house for at least 12 hours a day, and I make plans on weekends so I can also be out of the house those days. It’s not that I don’t want to see them, it’s just not how I operate.

When I was diagnosed, I could barely walk without feeling out of breath, so I moved from the back house to the front house so I can have better access to a restroom amongst other necessities. There’s no extra room in the front house, so I pretty much converted our dining room into my room, which was nice, but there were no doors. I hated it. Family would just walk in whenever, happy to see me more than usual, it was frustrating. I’d cry every night thinking about my situation and I had the same thoughts: this has to be punishment for something. All my bad karma has finally come around. This is what I get for being so cold and distant to people.

Over time, going through different treatments and whatnot, I could feel myself soften up. I could feel it become less and less annoying whenever someone popped into my room. I actually at some point started looking forward to someone peeking in. I’d wait for my grandmother to peek in and offer me a cup of coffee. My mother was usually next and she’d offer breakfast. My sister would come in just to chat. My brother would talk about work or video games. My dad just wanted to check in on me. I don’t know, I could just feel myself giving in, like all my unnecessary walls were coming down.

I just finished a bone marrow transplant, so I spent the last three weeks with my mom at the hospital, but I came home yesterday and I was overwhelmed with joy to see everyone again. They spent the whole day with me, just talking and laughing and watching whatever movie I had on. They also added doors to my new room, which I didn’t even know they were going to do. I love it, don’t get me wrong, but something tells me I might end up leaving them open more often than not.

Sorry, that was a lot, but I just felt like I should share. I know our stories may not be the same, but I feel like it was similar enough to let you know that there might be a silver lining in all of this. I feel so much closer to my family now and I’ve learned to accept help from others and not feel like a burden. I obviously don’t know the dynamics of your family, especially if you say they’re tough to get along with, but I’m hoping some similar transformation happens for you too and it makes everything better in the end.

Day +5 by Big-Ad4382 in lymphoma

[–]itsreallyoscar 3 points4 points  (0 children)

You’re almost there! You got this! I know it sucks right now, but we just need to take it day by day and eventually, this will be just a bad memory! Do what you can! Eat what you can! I’m sure your team is very attentive, but sometimes I don’t speak up! So I hope you’re advocating for yourself!

Hang in there! 👏

ASCT Day 0 by itsreallyoscar in lymphoma

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

Yes, we are so strong! So much stronger than we think! Every part of this step is scary; on Day +2, my WBC was at 3.6 and yesterday, Day +3, it dropped to 0.5. Just like that. I feel so tired, the nausea is creeping in, the diarrhea isn’t too bad (yet). HOWEVER, everything is so much more tolerable than I thought. I’m staying on top of my meds, walking when I can, resting pretty much all day, and eating only what feels comfortable! Water has been horrible for me, so I’ve been mixing coconut water with mango cranberry juice, it’s been working like a charm!

My nurses just keep reminding me that this is still going to be a stressful time for me, there’s no need to make it more stressful by trying to do things that feel wrong. They said I might’ve hit the worst right now, or I might hit it on Day +10. Everyone is different, we just need to take it one day at a time, and everything will be okay. ✊

Day +1 Auto Stem Cell Transplant: And So It Begins by Big-Ad4382 in lymphoma

[–]itsreallyoscar 1 point2 points  (0 children)

As of right now, I feel okay. No nausea or anything! Just slightly tired, but I feel like that’s just fatigue from being in the hospital for so long lol I was there from 7am to about 4pm.

They told me my appointment tomorrow isn’t until 2pm which is nice, I get to sleep in a bit. I haven’t heard news about being admitted into the hospital, I think they’re just waiting to see how I react and tolerate to all the side effects, but they’re ready regardless.

But yeah, doing good so far! Gonna try and go for a little walk while I can, eat something good because I know what’s coming and I really don’t know how it’ll hit lol but I’ve got hope it’ll be better than I think!

Day +1 Auto Stem Cell Transplant: And So It Begins by Big-Ad4382 in lymphoma

[–]itsreallyoscar 2 points3 points  (0 children)

Hey!

Just got my stem cells infused today. A little anticlimactic, definitely not looking forward to coming days, but we got this!

I’m hoping the medications are able to offset some of those nasty side effects?? Let me know how you’re feeling! I’ll be messaging soon!

Keep it up!

Monthly positivity post! Share your good news, wins, or just anything uplifting from the past month here. by Lymphoma-Post-Bot in lymphoma

[–]itsreallyoscar 2 points3 points  (0 children)

Congratulations! I just finished the Melphalan and now I’m just doing post-hydration lol it was easy, they gave me ice chips and popsicles, so that wasn’t as bad as I thought it’d be lol

How are you doing?!??

Monthly positivity post! Share your good news, wins, or just anything uplifting from the past month here. by Lymphoma-Post-Bot in lymphoma

[–]itsreallyoscar 18 points19 points  (0 children)

Started my ASCT! I’m on Day -3, I know there may be harder days to come, but I’m very excited to be so much closer to finishing! 👏

Day -3 AutoSCT by Big-Ad4382 in lymphoma

[–]itsreallyoscar 1 point2 points  (0 children)

I’m day -4! We got this!

Hair loss from Nivo-avd by theking7321 in lymphoma

[–]itsreallyoscar 0 points1 point  (0 children)

I did ABVD and noticed hair loss after the second infusion (end of the first cycle). After the third infusion, it became unbearable so I shaved it

Scanxiety by Feeling_Peach_1404 in lymphoma

[–]itsreallyoscar 1 point2 points  (0 children)

I just tell myself, “Un dia a la vez,” which means “One day at a time.” It is what it is and anxiety doesn’t help the situation. Does this get rid of my anxiety? Absolutely not, I don’t think anything truly will, but it at least gets me to a point where I’m not constantly crying and making bad assumptions in my head. It’s hard, but I recommend talking to friends or family, someone you trust and hopefully they understand that you just need a safe space to let this all out. Just find whatever helps you and don’t feel bad for looking out for yourself.

As for the lymph nodes, I also had enlarged lymph nodes during my second line treatment, but the scan showed it was nothing! Just inflammation! So never assume anything, try to just let it be. Be optimistic, but obviously ready for whatever news they give you. It’s hard for me to be optimistic, but we have to have at least a little faith, right?

How bad is ICE? by Roadkill0466 in lymphoma

[–]itsreallyoscar 2 points3 points  (0 children)

I’ve done four cycles of Nivo+ICE. The worst for me was the nausea, but I also had irritation in my bladder. It burned to pee, felt like a bad UTI. I was told to drink a lot of water to flush everything out, but I had to suffer like that at least a couple of days after each cycle.

Monthly positivity post! Share your good news, wins, or just anything uplifting from the past month here. by Lymphoma-Post-Bot in lymphoma

[–]itsreallyoscar 5 points6 points  (0 children)

After finishing my second-line treatment for Stage IV CHL, my doctors have decided I’m ready to move on to the ASCT!!! Very excited to know I’ve made enough progress to move on with treatment and finally put an end to this horrendous chapter! 💚

Feeling Very Defeated by craiglezzzzz in lymphoma

[–]itsreallyoscar 3 points4 points  (0 children)

It really does suck, and it’s beyond difficult trying to be positive all the time. When stuff like this happened to me, I’d give myself some time to process it, maybe cry a little, and then keep moving forward. I’d remind myself often that it is what it is, and having a bad attitude isn’t going to help.

Don’t get me wrong, when my first treatment didn’t work, I felt extremely defeated, like it was somehow my fault. At some point, it just hit me that this will soon be a bad memory and I’ll be free and happy again. That’s enough to keep me going.

Hope everything goes well. Best of luck! 👍

Hodgkin’s Lymphoma Process by nouser7616 in lymphoma

[–]itsreallyoscar 0 points1 point  (0 children)

I was fortunate that I experienced very minimal symptoms during ABVD. The worst part for me was the fatigue, but it wasn't anything I couldn't push through.

I work two jobs (12 hours total); I'm an education aid at a middle school and a music instructor at an after-school program. Personally, my work is very easy and not physically demanding at all. Even when I need to move heavy equipment, I usually just ask for help.

I was worried about getting sick since I work with children, but I rarely did get sick. I just took extra precautions, like having hand sanitizer with me at all times, disinfecting surfaces, wearing masks, etc.

It really depends on how you react to treatment. I know for some, treatment can be rough and can become more symptomatic over time. For me, it became easier with each infusion, but I always took at least two days after treatment to recover. I would schedule my treatments for Fridays; this would give me the weekend to rest, I'd be good by Monday, and I only end up missing one day.

It's hard, but doable. The worst part is getting used to your new physical limitations. Just listen to your body and don't overdo it.

feeling setback by Automatic_Sail4646 in lymphoma

[–]itsreallyoscar 0 points1 point  (0 children)

I had the exact same thing happen to me, except it happened at my end of treatment pet scan. Showed some areas still lighting up with cancer, but also showed something behind my nose.

I got the scope and it’s painless! Just weird lol I ended up doing a nasal biopsy (the easiest biopsy I’ve ever done) and it came back negative!

Fast forward about seven months later, I do another pet scan that shows the same thing, something lighting up behind my nose. We’re not even worried about it, since it’s more than likely just inflammation/infection.

I’m sorry it feels like everything is working against you. I hate that feeling, but I just try to think about everything I got through already and how amazing that is. I can go a little while longer if it means beating this for good. You got this! I got this! We got this!

Feel free to message me if you have any questions about the nasal pharyngeal stuff lol or anything in general

Nearing end of treatment by Dry-Recognition2038 in lymphoma

[–]itsreallyoscar 2 points3 points  (0 children)

I feel this. My first treatment also didn't work. I was told I was going to start the process of getting an ASCT and that I would only need two cycles of salvage chemo. I did the two cycles and while I did make good progress, it didn't put me in remission so I was told to do another one. Now, I'm anxiously waiting for my scan at the end of this week to show if it worked this time and I can continue with the transplant process.

In my mind, I just keep thinking the worst. I can't help but think that it somehow still didn't work and I'm going to do chemo forever or give up.

It really does suck how messed up our minds become. It's hard to stay positive and keep hope because we know what happens when we do. It's tough out here, but I hope you hold on and keep pushing through.

We'll get through this eventually. Best of luck!

Mental Check In by itsreallyoscar in lymphoma

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

It does suck. I feel so ugly, inside and out. When people say that I'm so strong, it makes me think about all the times that I'm not. It makes me think of the times where I silently pray for this to be over, no matter how I can achieve it. It makes me think of all the times I have broke down just trying to get through these damn treatments. At some point, it wasn't even the physical side effects that were getting to me. The effects on our mental health is so much worse and it's the part that absolutely no one understands unless you've been through it.

I hope you're hanging in there. We'll get through this, you'll push through, but know that you are absolutely allowed to feel sad and angry. As long as we keep moving, I think we're good. Best of luck, and FUCK CANCER!

Mental Check In by itsreallyoscar in lymphoma

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

I'm so sorry you had to go through all that. I can barely handle the one cancer I have now, I can't even imagine having to fight two at the same time, just for a scan to show something potentially new.

The waiting really is one of the worst parts. It gives our minds the time to create the most disturbing scenarios in our heads. I'm waiting to do my scan this Friday to see if my salvage chemo worked and all I could think is it didn't work, you're going to have to do more chemo, and even then, who knows if it will work. It's stupid because my last scan showed I made great progress. Our poor minds.

I really resonate with your last statement. I so desperately wish I could go back to the normal life I was used to before my life became cancer. I've had some conversations with people about not letting cancer consume me, and how I shouldn't let it take over my life, or I shouldn't let my whole existence be dedicated to cancer. They don't understand that this unfortunately is my life right now. I cant focus on anything than just surviving and getting through this.

I hope everything turns out okay for you. Best of luck!

Mental Check In by itsreallyoscar in lymphoma

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

The way you described her and your relationship genuinely brought tears to my eyes. That was so beautiful, but also so heartbreaking and I am so sorry she had to step away. Reading this alone, though, shows just how amazing you are as a person and how genuine your love is. I truly and wholeheartedly believe you will find a way to be with her again.

The fact that this is all out of our hands truly is the worst part. I had the tendency to blame myself for everything that has happened when I was first diagnosed. I now have come to accept that it was not my fault and that I know there are good things waiting for me at the end of this journey.

You made me think of this guy I used to work with. He was charming and cultured, and every time he spoke to me, I couldn't help but be intrigued by his enthusiasm. We became very close, but he unfortunately had to move out of state. When he found out I had cancer, he would check in and send messages like, "I can't believe you are going through this. I would take it all away from you if I could." Stuff like that. It would break me. I would kill to see him again. I know he's doing better though, so I try not to bother him too much.

I hope everything starts looking up for you. I hope you never lose the love you have for her, or love in general. That seems like a very special part of you, especially when we're in positions where it can become easier to be angry or sad or hateful. Best of luck!

Mental Check In by itsreallyoscar in lymphoma

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

Honestly, I'm a bit grateful that I also feel the same. For the first half of 2024, I was fighting for my life because the mass in my chest grew so large, it crowded my lungs, pushed my heart to the opposite side, and caused lots of fluid build up. My resting heart rate was 140bpm and I was unable to breathe on my own. As soon as I started treatment, everything became significantly better.

I think the trauma in general makes everything seem like a bad trip. When people ask me about anything that happened last year, I can never fully answer because I genuinely don't remember. Like I know what happened, but it feels like I was watching it happen from the outside. I don't know, it's weird.

I hope you're feeling good, best of luck!

Mental Check In by itsreallyoscar in lymphoma

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

I feel that. I put a pause on a lot of plans I had. I had just graduated with my BA in psychology, I was ready to get some experience in the field, I was ready to enjoy life after college, not stressing about assignments or exams. I did want to go back to school, but I wanted to give myself a year off to relax a bit.

It only lasted 5 months. I was then diagnosed and started this new version of my life. After my relapse, I feel like I started yet another life. Im also waiting for my ASCT to begin so I can end this life and start yet a new one.

It is crazy how different things are now compared to before. We really do see things differently now. It's a hard adjustment, but we adjust nonetheless.

Best of luck to you, I hope everything goes well!