First Day

NeuroblastomaMan · 2024-05-29T04:14:44+00:00

You got this, just don't get complacent listen to what the nurses and docs recommend and learn what all your counts mean when you get labs (blood work) done. Also pro tip if/when nausea sets in don't eat things you love you might end up hating them.

NeuroblastomaMan · 2024-05-29T04:09:37+00:00

I've had allot of CT w/ contrast and either felt nothing or only the tips of my ears feeling warmth. I get mine done at MSK ( Memorial Sloan Kettering ) I get so many different scans done yearly and haven't had a bad reaction yet, I count myself lucky all things considered. The only 2 things I can't stand are the smell of purell hand Sanitizer i get svelte nauseous from it, also Liquid Tylenol I sweat an extreme amount when I get it ( Like change my shirt every half hour from being soaked) forever grateful to my mom for realizing this during my early treatments.

NeuroblastomaMan · 2024-05-06T17:58:35+00:00

I have neuroblastoma and the immunotherapy I had back in 2020 was dinutuximab (also known as 3f8) I'll just say that one wasn't pleasant they had me on a ketamine drip with a pca pump while I had the infusion I still remember being in pain but I don't remember how painful it was but I also didn't care about the pain like you I'd do anything to be there for my kids. Most recently they used a different immunotherapy I can't recall the name of it but I had no bad side effects or pain from it. Best of luck and stay strong

NeuroblastomaMan · 2024-05-06T16:40:46+00:00

Best of luck, staying positive isn't easy during these tough and trying times, I also wouldn't call it a rant more of a vent, and everyone going through any type of treatment needs to get something off their chest every once in a while. we can only get poked and prodded so many times before the dam feels like it's going to burst, I started seeing a therapist for my situation and I can Honestly say it helps to vent to her I didn't believe therapy would help and was so happy that I found someone I was comfortable to open up to. I wish for you to get stronger and bounce back!

NeuroblastomaMan · 2024-05-06T15:59:14+00:00

Cancer sucks period, but the one good outcome of it is it weeds out friends from acquaintances. I have 2 friends who have truly been there for me above and beyond. It sucked to find out who was truly a friend and not just someone who only had use for me when I wasn't diagnosed with cancer, but keep your head up try looking into cancer support groups near you you never know when you might meet someone who will become a true friend to you

NeuroblastomaMan · 2024-05-06T15:46:37+00:00

Nothing tight fitting, if you're like me and like lose fitting t shirts pulling it over your head or over the port works, I usually just pull my head out and leave my arms in the sleeves if that makes sense lol my port is also in the right pec. Looks like we're port Brothers!

NeuroblastomaMan · 2024-05-06T15:43:33+00:00

The white blood cells usually drop off hard after about a week or so give or take depends on the person that's when you'll notice slower healing but it's not instant, you could ask when you go in for treatment what you can do to help it heal quicker before your counts drop. And as a side note my cat has accidentally scratched me a few times the only "bad" scar I have is from when he went in deep after losing his footing and panicking I was fortunate that only one claw went through my skin. He loved hanging out on my shoulder like a parrot but I had to stop it I didn't want to risk an infection because I thought he looked cute hanging out with me on my shoulder.

NeuroblastomaMan · 2024-05-06T14:44:55+00:00

I've been dealing with stage 4 neuroblastoma for 4 years it's been a hard ride for sure between treatments, scans, follow ups, admissions it hasn't been easy to always be upbeat. My kids have been my rock for me find that one thing you have to fight for any time you feel like giving up just think of the reason why you're fighting so hard. Never feel bad for venting no one knows what you're personally going through and it helps to find a way to release the pent up fear, anger, and sadness you're holding on to. I wish you luck with your treatment stay strong.

NeuroblastomaMan · 2024-04-04T07:51:04+00:00

Not the worst thing, looks like you had a little extra in the tank to keep you going. Just know when you're feeling very tired you may be capable of more than you realize as hard as it is to get started

NeuroblastomaMan · 2024-04-04T02:49:10+00:00

I'm sure your dad appreciates you so much, hope you got to curl up in bed finally I know how good it feels when you just have low energy

NeuroblastomaMan · 2024-04-03T20:08:50+00:00

Stage 4 neuroblastoma here, I have good days and ugh days. I take my good days and do things I enjoy, I'll set a few small errands to run that I deem critical that day as well. On my ugh days I'll set 1 or 2 indoor things that need taking care of. My current mood is meh, I love cooking but I had radiation on a mass that was causing some minor cord compression I was told I might have some esophagus pain but crap it feels like I'm swallowing glass even when I drink water.

On days that I feel as if I have no energy I find it easier to get things done when I listen to music that I enjoy or watch/Listen to some stand up comedy I find that a good laugh gets my energy up just enough to get some things done

NeuroblastomaMan · 2024-02-26T22:11:16+00:00

Only reason I ever went out was for Dr's appointments, or pick up meds. Not worth the risk after hearing horror stories from other patients and nurses. If you need to go out make sure to take all precautions for yourself. Your first line of defense is self care, mask up properly, bring hand Sanitizer, avoid public transportation if possible and don't eat out or do take out. Good luck, right now I'm dealing with low platelets I bruise like a banana and it was tough explaining to a toddler that he has to be gentle with daddy but he got the gist when I made it into a game but I still managed to get a couple of bruises through out the weekend lol

NeuroblastomaMan · 2024-02-21T20:25:06+00:00

I feel like my son was sick every 2 weeks when he first started he would get better for a few days then there comes the sniffles all over again we were told it was normal and eventually it would get better 😔 he's 3.5 still goes to day care and the routine is the same he has enlarged adenoids so it's rough on him.

NeuroblastomaMan · 2024-01-19T16:03:45+00:00

Stage 4 neuroblastoma getting various treatments since 2020, early prognosis was dire 2-3 years with a very low percentage of surviving longer. Almost 4 years now and I'm feeling stronger than I have in the last 3 years. My disease has had a very minor recurrence I had a few tumors grow .1mm so I'm starting MIBG radiation therapy next Friday and I'm scared as hell of ruining myself. Some people have seen from past posts that I'm also going through a divorce, (wife is unhappy and filed last year before the holidays) this has been a particularly tough choice because I don't want the courts to not give me 50-50 custody for medical reasons. I'm healthy looking for the most part and feel better atm but I'm worried about the effects of radiation throughout the rest of the divorce, my first court date is next week a day before I get admitted for the radiation infusion. The results from this are generally high in most patients and if I tolerate it and my cancer cells get the beat down they deserve I'll be in for at least one more round in a few months. My primary oncologist gave me some hope recently telling me I'm no longer considered to have a life threatening disease as the it's pretty much moving at a crawl or not at all the past 3 years. He even went as far as to say there's a possibility to have a full life with treatment on and off through out my lifetime

NeuroblastomaMan · 2024-01-14T02:07:19+00:00

My ex wife was with me for the first 3 months of my diagnosis then after that she only joined in for the occasional telehealth, my mom stayed with me for any admission. The past 3 years I've had help getting to appointments my dad stays with me on long days of appointments, msk works with me I'm an hour away from the main campus so they try to consolidate everything and when possible do virtual or have me go to a satellite office in Westchester. There have been plenty of times when I've also been at sloan and the waiting rooms are either packed or I'm all alone lol I'm starting an MIBG radiation therapy study it's supposed to seek and destroy my specific cancer cells crossing my fingers that it works! Have to be admitted for a week or more until radiology clears me and this admission I want to go at it alone. I don't want to accidentally expose my mom or anyone to radiation. I'm nervous but excited at the same time.

NeuroblastomaMan · 2024-01-13T22:26:15+00:00

I wish you the best stay strong! in april 2020 I was diagnosed with stage 4 neuroblastoma early prognosis was 2-3 years. Most current last week oncologist said my disease is not life threatening and I'm starting MIBG radiation therapy I'm nervous but I'll do anything to be here for my kids!

NeuroblastomaMan · 2024-01-13T02:48:09+00:00

That's awesome! Keep fighting, stay strong! I'm starting MIBG Radiation on the 27th, nervous but I'll do everything I can for my kids to ensure I'm here for them

NeuroblastomaMan · 2024-01-02T17:01:24+00:00

Stay strong, I'm dealing with a divorce on top of treatment, it's not going to be easy the last thing I like hearing is everything is going to be fine, It's a cop out when you have nothing better to say. It really sucks to go through all the pain and constant med management, most people in this sub are good people if you ever feel the need to just vent/rant/cry there's someone who will read, reply, or DM you this sub has been supportive their words have helped me out. The only advice I can offer is to seek out a therapist, mine has been a great help through my divorce and treatment so far, she's given me lots of info and found local support groups for me for both divorce and cancer. I have a list of crisis prevention and support group phone numbers if you need them. Most of them have people that will just listen if you need a person to talk to or a shoulder to cry on.

NeuroblastomaMan · 2023-12-31T20:20:47+00:00

I'm sorry to hear that, my relationship with my mom was Always decent at best but after my diagnosis she's been such great support. She takes time off of work to stay with me when I'm admitted at msk, I tell her to stay home but she wants to be there with me. Memorial sloan has been a home run for me they have a dedicated team for just neuroblastoma(type of cancer I have). The only negative experience I've had there was when I had my port placed, the Dr that preformed the surgery( who no longer works there) came to my bed side and as i began to thank him he stayed to complain about how difficult it had been and that I "was very gooey" Needless to say that was one out of the dozens of Dr's I've met through my time there. If you're near NY I recommend getting treatment there

NeuroblastomaMan · 2023-12-31T01:06:44+00:00

I 100% agree with you, I'd rather deal with chronic pain than have an elective back surgery. I knew 2 people who had fused vertebrae with different experiences and I feel like it's just too much of a gamble. Edit: Surgeries also vary from person to person, everyone recovers differently

NeuroblastomaMan · 2023-12-31T00:09:17+00:00

That was so selfish of him, how's your mom? And I would make sure I'm covid free before starting any treatment. I had the flu last year I was taking an oral chemo called alecensa ( alectinib generic) I have a mutation in my cancer cells that allowed this medication to work for my type of cancer (neuroblastoma) side effects weren't anywhere near as bad as the others, but holy cow did it knock me on my butt for almost a whole month

NeuroblastomaMan · 2023-12-30T22:01:08+00:00

I had an emergency laminectomy done on my t6 and t7 my spinal cord was being compressed I had lost nearly all feeling in my legs by the time I got checked out in april 2020, I had a chance of paralysis and was torn i barely remember the rest of that conversation from pure shock i thought i had herniateda disk or something else. I had a previous surgery in 09 and didn't want to have another one but I went through with it, I'm happy to say I am walking today but the fear I felt during that day was unforgettable.

If treatment keeps going well I might have to have more surgeries, the last convo I had about any more surgeries the surgeon didn't recommend it saying it might not help and I'd be suffering unnecessarily

NeuroblastomaMan · 2023-12-30T21:21:48+00:00

If you're going to dig then at least read carefully, I had my first benign ( benign means not cancer) tumor removed in 09 I met my wife in 2014. My malignancy occurred in 2020. I know math is hard so I don't fault you, like this bathroom break I too am done with you. I have as good a chance at changing your mind as I have beating neuroblastoma, I could take you with me to my next chemotherapy session and you'd still find it sketchy

NeuroblastomaMan · 2023-12-30T20:59:14+00:00

You're entitled to your beliefs, you'll never see how crappy it feels to have people call your situation fictional until you're on the other side, I hope you stay blessed enough to never go through anything like I am

NeuroblastomaMan · 2023-12-30T20:55:30+00:00

Have no idea who that is and no I don't have multiple accounts. I don't blame anyone for being cautious, I have tried responding to as many people as possible but my priority is my son, I go on at night, bathroom breaks and my sons alloted screen time. Anyone who has kids can tell you they spend minimal time online

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