My Stem Cell Transplant Experience for Hodgkin's Lymphoma

Рет қаралды 5,326

Күн бұрын

Hi everyone. It has taken me about 6 months to be able to record this video. This was the hardest thing I have ever experience. However, I want to be able to take this unfortunate experience and help others. Please give me a thumbs up, subscribe, and leave me a comment. Feel free to ask any questions.
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#stemcelltransplant #stemcelltransplantforlymphoma #stemcelltransplantexperience
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my website: www.ohyouresot...

Пікірлер: 59

@briannafresh8 3 жыл бұрын

Thank you so much for sharing your story. I got diagnosed with IVB HL in January of this year and just went through 12 rounds of ABVD... it stopped working after two months and now we’re looking at a stem cell transplant. I feel heartbroken, terrified and doomed. This is the first video I came across and your positivity is saving me right now.

@ohyouresotough0 3 жыл бұрын

Hey Brianna feel free to msg me on instagram if you need to ask any qs

@jamesbeasley3887 2 жыл бұрын

Hey Brianna. Keep your head up. I was also diagnosed w HL last year and did the same ABVD treatment. Mine came back after a few months as well. I’m currently doing my recovery chemo and preparing for my transplant. I just wanted to tell you to keep your head up and not to be discouraged. You can do this!

@ankitdubey2366 2 жыл бұрын

Mine hl came back after 8 year Dr gives me imunotherpy now there's no lymph inside my body but still they are looking for transplant 😭

@sousounina4295 11 ай бұрын

@@ankitdubey2366how are you new ?

@sousounina4295 11 ай бұрын

How are you? Did you have the transplant? @@jamesbeasley3887

@Jay-hg6sv Жыл бұрын

You’re so amazing my boyfriend is currently going through this he’s getting ready for the stem cell transplant same cancer stage 4 im his caregiver I’m doing research to try and be as best of help with him that I can he doesn’t speak much of his feeling or what he goes through I mean I see it first hand but to be able to gain a better understanding thank you for sharing your story !! May god continue to heal your body and rejuvenate you ❤

@odiafunnyentertainment123 Жыл бұрын

What is his conditions now?

@liamharris2229 2 жыл бұрын

Thank you so much , this actually helps me alot as il be going through the transplant as I have hogkin lymphoma. So watching this has made me excited to be able to return to normal life for a long healthy life after my transplant. I hope you are still doing well

@sousounina4295 11 ай бұрын

How are you? Did you have the transplant?

@sandralara5847 2 жыл бұрын

Thank you so much for the information in this video it gives me a peace of mind for my son that has to go through this

@erichumber3831 2 ай бұрын

You are awesome. Way to Go

@joshuashepherd8995 3 жыл бұрын

my partner is going through this right now. Due to covid i'm not allowed to visit him. Thankyou for this video, it's made me understand how he must be feeling cos he's not one to share.

@ohyouresotough0 3 жыл бұрын

So glad I was able to give you some insight.

@AmbitiousHarley 3 жыл бұрын

Thank you so much for sharing your story. Many people will be encouraged and motivated by your experience. I came across your channel last night as I was searching for WW Starbucks drinks. You were at the top. I’m happy that you showed up and that I subscribed. Continue to fight a good fight.

@ohyouresotough0 3 жыл бұрын

Thank you so much

@emeraldm6774 4 ай бұрын

Thank you for sharing your experience. I'm getting my stem cell transplant in a week. I'm so scared.

@ohyouresotough0 4 ай бұрын

I hope all goes okay for you ❤️

@lionpc7632 15 күн бұрын

How are you know

@reneekeahey2453 3 жыл бұрын

Thank you so much for making this video. I'm 1 month away from my Stem Cell transplant for Hodgkins Lymphoma. I go in 2 days for my central line placement and then I get a day of chemo. Why would I get 1 day of chemo? Then, I get Neupogen shots for 7 days. I keep forgetting to ask why I would get chemo for the one day? My high dose chemotherapy doesn't start until my hospital check in date of Jan 5th. I'm scared to death, to be honest. I'm really not liking the idea that I'm going to have to pee bedside? I'm more scared that Covid could prevent my husband or daughter from being with me. I can handle anything as long as I have my family. The BMT social worker told me that she will come see me every day if my family doesn't get to come. Lmfao! As sweet as that is, it DOESN'T make me feel better! Ok....I'm rambling. Thank you again for making this and I'm so happy that you are doing great! You look fantastic and I hope I will look as good.

@ohyouresotough0 3 жыл бұрын

That is really strange! The only thing I can think is they might be giving you the first day outpatient? But it doesn’t make much sense to wait 7 days then! Do you remember the name of the chemo? The peeing is only for the day you get the cells and are hooked up :) it was still terrible but only a temporary terrible. I really hope they let someone come with you. I am here if you have any questions or need to chat. You can DM me on Instagram - @ohyouresotough ❤️

@reneekeahey2453 3 жыл бұрын

@@ohyouresotough0 I called my BMT coordinator today to ask about the chemo day. His first response was, we talked at great lengths about this 3 times Renee. Hmmm, we did? My husband has been at every appt and when asked, he said he didn't remember us discussing the one day of chemo!! So, tell me what this is for as if we HAVEN'T discussed it! Lmfao! I wanted to call him a prick but I bit my lip and chalked it up to he was just having a bad day. He said it's called Chemo Mobilization. This chemo helps to separate the stem cells from my bone marrow. I definitely do not remember having this discussion but I know now. It makes sense as to why I get it for one day, 2 1/2 weeks before my high dose starts. 😊

@ohyouresotough0 3 жыл бұрын

That is so weird! It reminds me of the neupogen shots before they collect your stem cells. And I can't stand those types of responses... makes me think of my first onc who called me "Dr Google" and dismissed everything I said.

@reneekeahey2453 3 жыл бұрын

@@ohyouresotough0 I got my line placement in this morning. They had to hit me twice with the twilight sedation as I was able to feel everything. Probably better to just give me Ativan as that stuff knocks me out! As soon as I felt that cold liquid going through my veins the second time I was like...gargly gloop, yaaaaaa, night night. 🤣 I was extremely disappointed that they wheeled me from recovery straight to infusion for my chemo mobilization. ☹ I was hoping my husband was coming to get me so I could get a coffee and get a breather before an 8 and a half hour infusion right after 3 hours of prep and surgery with nothing to eat after midnight, the night before. The awful thing about me and being locked down and not being able to leave, I get severe anxiety!! So bad that I start crying and then can get mean. No matter how much I breathe or tell myself not to, it makes it worse. I feel so bad for the nurses and my husband. I cried so much today, my face swelled to about 3 times the norm. I have got to get this anxiety under control and I don't know how. I have Ativan but I go through them like chiklets and I don't want to get addicted to them. I just don't know what to do

@ohyouresotough0 3 жыл бұрын

Ugh I am sorry- I demanded they put me under for the line placement. Twilight doesn't work on me! If you don't take an anxiety med daily already I would ask. I take sertraline. It helps a lot and I am on the lowest dose. Ativan helps only in like those immediate extremely anxious times and this is daily balancing.

@thomasrachal8929 Жыл бұрын

Thank you for this video. After my second bout with HL, I had my SCT at Shands UF seven years ago. Chemo brain has made me forget so much and your story reminded me of many things that had forgotten. So glad to see that you are doing well.

@leetuffin 3 жыл бұрын

So much of what you say resonates with my experience, now on day +45 and still feel weak! Thank you for this video and best of luck for the future x

@ohyouresotough0 3 жыл бұрын

YW! I hope you feel stronger soon!

@ankitdubey2366 2 жыл бұрын

Hows going brother Are you ok ?

@leetuffin 2 жыл бұрын

@@ankitdubey2366 yes doing really well now thank you

@ankitdubey2366 2 жыл бұрын

I will also go for transplant In few month Very late relapse Hodgkin lymphoma Relapse after 9 year I'm only 18 year and it's 3rd relapse My whole life Feeling sad for my self 😂

@leetuffin 2 жыл бұрын

@@ankitdubey2366 I’m really sorry for you, hope your treatment goes well my friend

@TheSweatyTravelingMom 2 жыл бұрын

How are you doing? I just got the news this weekend that I've relapsed and chemo/SCT is the plan over the next few months.

@user-dm7zb7gm7m 4 ай бұрын

I was in 319 third floor mayo June 2021 19 days

@baran1454 Жыл бұрын

I am hoping that this stem cell transplant will also help me with my stroke I had 5 years ago

@michelebarry7043 2 жыл бұрын

Know exactly how you feel, had my ttansplant in 2016, and then had a year of chemo after my transplant for HL. Have had 41 rounds of chemo and so many surgeries. I was in the hospital for 17 days,

@rodelynmariano8822 Жыл бұрын

Im going to undergo stem cell transplant maybe in two months time. I had relapse Hodgkin Lymphoma.

@odiafunnyentertainment123 Жыл бұрын

How are you feel now

@jeepin123 2 жыл бұрын

Question on treatment. Is it possible to do immune therapy such as nivolumab in conjunction with chemo for a recurrence? I understand on 1st treatment you can do chemo with immune therapy if you get on a trial. Im also told due to insurance they mandate a stem cell for a 1st recurrence then for a 2nd recurrence they allow the trial Drug immune therapy. Since the immune therapy drug should it work for you has great results fighting hodgekins why is it necessary to jump to a stem cell transplant vs more chemo with immune therapy for a first recurrence? Thank you

@ohyouresotough0 2 жыл бұрын

As far as I know nivo is only for a relapse after a transplant. a transplant is the best chance for a curative approach

@baran1454 Жыл бұрын

I am getting the stem cell transplant in March will the stem cells possibly do other work to repair anything

@odiafunnyentertainment123 Жыл бұрын

How are you now😢

@baran1454 Жыл бұрын

@@odiafunnyentertainment123 at the moment I am in remission hopefully for good

@baran1454 Жыл бұрын

@@odiafunnyentertainment123 doesn’t help with anything but cancer

@odiafunnyentertainment123 Жыл бұрын

@@baran1454 God bless you 🙏🏻

@lionpc7632 15 күн бұрын

How are you know I am also going to take steam cell transplant I need some questions to ask plz give your insta id

@kellykrug1988 3 жыл бұрын

You know I was thinking why don’t they just put in a catheter when they give you the meds and fluid to make you pee so much. Seems like that would have been a heck of a lot easier and less traumatic. I am glad that is all behind you now and you can focus on your future. 💗🦄💪🏻

@ohyouresotough0 3 жыл бұрын

They didn’t offer it but I would have freaked out. I had a bad experience with that when I have the epidural.

@kellykrug1988 3 жыл бұрын

ohyouresotough0 Oh really? I’m sorry. I had them during my c-sections and hysterectomy and I was like this is great I can sleep through the night without having to get up to pee. 🤣 Of course the damn nurses kept waking me up anyway.

@ohyouresotough0 3 жыл бұрын

Never fails with those damn people coming in the room every 20 mins lol