I've been watching your stem cell transplant journey. I have a 4 month old daughter who has been diagnosed with sickle cell beta thalassemia. My mom has the same disease. Seeing you and mother overcoming this disease is very encouraging. Just in case my daughter decides she want to undergo this procedure when she gets older, I want to make sure I am very well educated and see how it has benefited other people with sickle cell.
I am glad my videos can be of encouragement to you! Yes, that is a fantastic plan! Your daughter is in great hands with a very proactive momma like yourself!! I hope that by the time she gets older, these curative therapies will be more commonplace and even more safe than they already are!
Thanks for the awesome videos, because you’re truly helping people. I’m glad to see that you’re feeling great and doing well on your transplant journey! 🤗
@@christellesalomon Hi Christelle! Yeah, I’m currently doing the THC cannabis patches for my daily pain, and it’s wonderful. I literally just got approved last month to try them. Unfortunately though I’m still going quarterly transfusion because the Hydrea didn’t work to keep my hemoglobin up years ago, and I’m afraid to try again with a stronger dose. Not sure if the toxicity of Hydrea bring a chemotherapy drug is bad long term, compared to the multiple transfusion every 3 months. Otherwise I’m doing pretty good, still working everyday. Let me know your thoughts on Hydrea though if you can.
@@alanab17 Yayy!! I am so glad the patches work for you!! I didn't even know cannabis patches existed! I definitely will check them out! And I feel you on the Hydrea concerns. There is a lot of data that shows Hydrea is pretty safe for pts with SCD! Even infants are allowed to take it! I think the dose we get as pts with SCD is much smaller than for treating cancer, and that's why the risk of side effects is so much lower. And there's also data for long term decrease in organ damage too! I always recommend giving Hyrdea a try and to try to do dose-escalation as advised by your doctor! They will do bi-weekly and monthly labs to make sure that your blood counts aren't dropping too much. And if they are, you could always drop the dose back down or stop altogether. I thought Hydrea worked REALLY well for me, but I just couldn't tolerate a higher dose b/c I would get too anemic. But I don't regret trying it at all and highly recommend it!
@@christellesalomon Yes the patches are pretty much a new thing, and I was shocked that they worked but yeah it worked for my worst pain. So, did Hydrea make your hemoglobin decrease? Is that what you mean by anemic?
@@alanab17 thats a good question! at 2000mg a day, it made ALL of my blood counts really low. My hgb was like 4, I had very low to zero white blood cells, and had to get an emergent transfusion. I guess the more accurate term is actually "pancytopenic!" But as long as my dose was under that, all of my labs were fine.
This is unarguably the best page content for the Scd world, i don't know why this page hasn't gotten a lot of traction. This page needs more traction. I would be so pleasurable to reference people to see throughout this page, as it has a lot of goodies and what could thrive a fellow human success. I'm happy to hear your AVN was triggered and dealt with earlier on, you didn't have to go throughout same phase as me. As for me, what saddens me was my health care provider who wasn't that professional and didn't put me on a plan on what next to do. When my AVN started; i said: doc, why is it that when i compress on my thighs i feel relieved, but the moment i decompress it i feel lot of pains? She unprofessionaly replied me: "but, you don't expect me to forever be holding on your thighs for you". Had it been, my AVN wouldn't have escalated or leading to me having on surgery. To be candid, i walked to the xray department to collect my xray result. And that health care provider couldn't detect an early stage of AVN, i walked home with pains and later saw a more doc who's more professional, and i was unfortunately told i needed an AVN of the hip🥺, which later now persisted to knees. Even after having to cater for the complete surgical bills, the hope of recovery has been put on stake like a mirage. This perturbs me, i feel like turning on the hands of time to correct on some mistakes but this has built me more to be stronger, and very willed. I haven't given up despite the negativity, and I'm putting my all to get 💯 bounce back. Something, will definitely work out better for us all, i believe tomorrow will be better than today.
Lastly, you having on your bmt will forever be the best and strongest decision you've ever made. It so nice of you christelle salomon❤, what you're doing not everyone could share on their success stories. You're a good person i will always tell you this. You're one of the best person the Internet has ever connected me too.
@@lawalmuhammad458 your story breaks my heart every time I think about it! It really shouldn't be this way for us as patients! I'm horrified at what the doctor told you - I'm sorry you went through that and are still suffering today. I truly believe that there will be a long term solution for you and you won't have to suffer like this forever! I hope that together, we can change the story of patients like yours in a positive way forever! SCD is an world-wide issue!! We must treat it as such!
All of the resources are linked in the description section!
I've been watching your stem cell transplant journey. I have a 4 month old daughter who has been diagnosed with sickle cell beta thalassemia. My mom has the same disease. Seeing you and mother overcoming this disease is very encouraging. Just in case my daughter decides she want to undergo this procedure when she gets older, I want to make sure I am very well educated and see how it has benefited other people with sickle cell.
I am glad my videos can be of encouragement to you! Yes, that is a fantastic plan! Your daughter is in great hands with a very proactive momma like yourself!! I hope that by the time she gets older, these curative therapies will be more commonplace and even more safe than they already are!
Thanks for the awesome videos, because you’re truly helping people. I’m glad to see that you’re feeling great and doing well on your transplant journey! 🤗
Thank you, Alana!! I truly do hope so! I've been thinking about you the past few weeks!! I hope you're doing well!
@@christellesalomon Hi Christelle! Yeah, I’m currently doing the THC cannabis patches for my daily pain, and it’s wonderful. I literally just got approved last month to try them. Unfortunately though I’m still going quarterly transfusion because the Hydrea didn’t work to keep my hemoglobin up years ago, and I’m afraid to try again with a stronger dose. Not sure if the toxicity of Hydrea bring a chemotherapy drug is bad long term, compared to the multiple transfusion every 3 months. Otherwise I’m doing pretty good, still working everyday. Let me know your thoughts on Hydrea though if you can.
@@alanab17 Yayy!! I am so glad the patches work for you!! I didn't even know cannabis patches existed! I definitely will check them out!
And I feel you on the Hydrea concerns. There is a lot of data that shows Hydrea is pretty safe for pts with SCD! Even infants are allowed to take it! I think the dose we get as pts with SCD is much smaller than for treating cancer, and that's why the risk of side effects is so much lower. And there's also data for long term decrease in organ damage too!
I always recommend giving Hyrdea a try and to try to do dose-escalation as advised by your doctor! They will do bi-weekly and monthly labs to make sure that your blood counts aren't dropping too much. And if they are, you could always drop the dose back down or stop altogether.
I thought Hydrea worked REALLY well for me, but I just couldn't tolerate a higher dose b/c I would get too anemic. But I don't regret trying it at all and highly recommend it!
@@christellesalomon Yes the patches are pretty much a new thing, and I was shocked that they worked but yeah it worked for my worst pain.
So, did Hydrea make your hemoglobin decrease? Is that what you mean by anemic?
@@alanab17 thats a good question! at 2000mg a day, it made ALL of my blood counts really low. My hgb was like 4, I had very low to zero white blood cells, and had to get an emergent transfusion. I guess the more accurate term is actually "pancytopenic!" But as long as my dose was under that, all of my labs were fine.
This is unarguably the best page content for the Scd world, i don't know why this page hasn't gotten a lot of traction. This page needs more traction. I would be so pleasurable to reference people to see throughout this page, as it has a lot of goodies and what could thrive a fellow human success.
I'm happy to hear your AVN was triggered and dealt with earlier on, you didn't have to go throughout same phase as me.
As for me, what saddens me was my health care provider who wasn't that professional and didn't put me on a plan on what next to do. When my AVN started; i said: doc, why is it that when i compress on my thighs i feel relieved, but the moment i decompress it i feel lot of pains? She unprofessionaly replied me: "but, you don't expect me to forever be holding on your thighs for you". Had it been, my AVN wouldn't have escalated or leading to me having on surgery.
To be candid, i walked to the xray department to collect my xray result. And that health care provider couldn't detect an early stage of AVN, i walked home with pains and later saw a more doc who's more professional, and i was unfortunately told i needed an AVN of the hip🥺, which later now persisted to knees. Even after having to cater for the complete surgical bills, the hope of recovery has been put on stake like a mirage. This perturbs me, i feel like turning on the hands of time to correct on some mistakes but this has built me more to be stronger, and very willed. I haven't given up despite the negativity, and I'm putting my all to get 💯 bounce back. Something, will definitely work out better for us all, i believe tomorrow will be better than today.
Lastly, you having on your bmt will forever be the best and strongest decision you've ever made.
It so nice of you christelle salomon❤, what you're doing not everyone could share on their success stories. You're a good person i will always tell you this.
You're one of the best person the Internet has ever connected me too.
@@lawalmuhammad458 your story breaks my heart every time I think about it! It really shouldn't be this way for us as patients! I'm horrified at what the doctor told you - I'm sorry you went through that and are still suffering today. I truly believe that there will be a long term solution for you and you won't have to suffer like this forever! I hope that together, we can change the story of patients like yours in a positive way forever! SCD is an world-wide issue!! We must treat it as such!