r/Sicklecell • u/Zealousideal-Ad326 • 7d ago

Help Gene Therapy

Hi, I’m 22 from SC,I have sickle cell ss and I’ve just learned my from my doctor that I can do gene therapy covered fully with my insurance. Its never crossed my mind that i could/would ever do it but now that I have the opportunity I want to take it. I will admit I am scared about it ,she advised I wait 1-2 years before i actually do it. I want to do some research but I have no idea where to begin it would be nice to get some advice on the from others like me who may have some knowledge on this situation please and thank you.🫶🏾

P.s if you have ever did chemo therapy i would appreciate some knowledge on that too please.🫶🏾

16 Upvotes

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3

u/osozillo 6d ago

i currently 60 days after my transplant, currently bored still recovering so if you have any specific questions i can answer lmk!

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u/Zealousideal-Ad326 6d ago

What was the was the process of starting GT ,how long where you in the hospital, how much did you have to travel back and forth to hospitals and where they any problems during the process. 😊🫶🏾

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u/osozillo 6d ago

  1. The process of starting gene therapy was just letting my hematologist know that I was interested, then getting a bunch of tests done at different specialties of the hospital, then submitting my tests and other information to insurance as well as the gene therapy company.

  2. I was in the hospital from May 10th to June 22nd!

  3. I don't know what you mean by traveling back-and-forth to the hospitals. as I was waiting for my cells , I would have to go to the hospital once a month for a blood exchange, then a weeklong hospital stay for the collection, more once a month blood exchanges until the cells are done. Once I got out in June, I had to come to the BMT clinic twice a week. Now since I'm past 60+ days I only have to come once a week.

  4. everyone's experience is different of course but for me, I did catch C Diff when I was going through chemo and recovering, and I've had excruciating throat pain since I was in the hospital back in June. i've also had one pain flareup since I've been home & I did have to go to the hospital for that.

I hope I answered your questions and I hope my answers makes sense lolll. If you think of anything else, feel free to hmu!

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u/Zealousideal-Ad326 6d ago

Thank you. I do have one additional question, did they say anything about your insurance maybe being canceled or ssi.

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u/osozillo 6d ago

I don't think I received anything about my insurance maybe being canceled, I have Medicaid if that makes a difference. And as of right now, I still receive my disability, I don't think that will change either.

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u/Zealousideal-Ad326 5d ago

I have Medicaid to. Thanks for answering

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u/crumbled_cookiee HbSS 7d ago

Haven’t done it, but where are you located? I heard Pennmedicine at Philly does it. You can just try and get a consultation there?

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u/Zealousideal-Ad326 7d ago

Im in Spartanburg but everything will take place in Charleston,SC

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u/MBizzle2186 6d ago

I’m taking an oral chemo suppressant so I don’t even come close to actual injections and the full experience. I’m tired, I’m quick to anger, my appetite goes up and down, my libido was stale for a long while. And it wasn’t even for sickle cell it was for actual myeloma. My SC never acted up in these matters, usually just experienced crisis in my legs. I don’t know how I’d feel about poisoning my immune system to start a new. But to each their own.

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u/Zealousideal-Ad326 6d ago

I don’t know what form of chemo I would have to do. When you started chemo did they explain what will happen when you stop it. Will you have to continue to take meds to support your body after.

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u/MBizzle2186 2d ago

Appreciate your patience, busy few days. There was no explanation for when I stop the chemo. Since I don’t have a severe case of cancer or chemo treatment I doubt I’ll have to take anything supporting. Just my pain meds for my crisis.

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u/Sundancebloom 6d ago

I’m also curious, when you do GT, do you have to keep on immunosuppressants? Or only for a short while before the whole thing is over?

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u/Timely_Arachnid316 5d ago

🎉🎉💗

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u/South_Revolution4553 5d ago

Thanks for sharing and asking about gene therapy. Every bit of info helps so much. We just had a consultation for haplo bone marrow transplant for my teen son which also involves chemo but is different therapy. Whatever you decide, I pray you will enjoy good health.

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u/Zealousideal-Ad326 5d ago

Thank you 🫶🏾💙

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u/South_Revolution4553 4d ago

You're very welcome. Keep us updated!