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Your Thoughts on China's Stem Cell Educator Therapy Clinical Trial

Discussion in 'Research' started by Turtle1605, Dec 9, 2013.

  1. bijanrad

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    Sorry folks, could not make the chat work for me. I will try for next week to et up some tentative time schedule . I will also attempt to gather as much information as requested by Josh.
     
  2. StillTypeI

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    Bijanrad, if you could post your availability, I'm sure there would be a number of people who would attend.
    There was 5 or 6 of us(I think) last Friday.
    Please let us know!
     
  3. bijanrad

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    Again my apologies for last Friday. Please feel free to post your questions and I will be glad to answer them to best of my abilities. As for "Chat"; I get home about 7:30 to8:00 pm Los Angeles time and I am afraid this would be kind of late for some at east coast. However, we can try again for Friday7:30 . I suggest that we all confirm by Thursday evening. Also, please post all your questions prior to Chat so I can be prepared . Regards
     
  4. sszyszkiewicz

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    Like I had posted earlier, I wanted to thank both you and your daughter for taking this chance. I hope it works out for her!

    i was curious about the getting there and back....the logistics. How much did it cost? how long were you in China? What did you eat (how did you deal with carb counting)? How did you get there (flights trains etc...)? Where is there? How did you communicate? Do you have to go back as part of the study? What arrangements do you have with your endo and the study in terms of sending data?

    i live on the east coast and have no problem with a 7:30 PDT chat time start on Friday evening.
     
    Last edited: Apr 17, 2014
  5. mo779

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    bijanrad, I wish you and your daughter all the best, and I pray that the treatment starts to take effect soon, and it turns out to be a miracle we are ALL waiting for. What is the update on your daughter? Any improvements? I know you said that the doctors advised to wait for at least 3 months, but have you noticed anything? Also, what does your Endo say about all this?
     
  6. bijanrad

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    I will be at the computer 7:30 PDT . I have never done this; please let me know who will need to initiate the "chat" . Josh said press the new chat button. Then what? Could you please let me know?.
    As for questions posted, the following comments are in order: First of all I need to say for the records, that my comments are not to endorse or otherwise discourage anyone from receiving this treatment. My daughter was diagnosed 12/11/13. She received the treatment on 3/12/14 . The follow up evaluations are coming up . Dr Zhao and us are in communication with local doctor to see our daughter next week . The test scheduled are : C peptide, A1C , other immunological test and glucose tolerance test
    The only indications that we have now are fasting glucose level, amount insulin intake for correction, overall weight stability, repeated glucose measurements during the day. As of this date we have not seen any improvement or worsening of her illness by our observations . Again we have been told repeatedly that we need to wait three months .
     
  7. bijanrad

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    Hope we can make the Chat work for us. RGDS
     
  8. joshualevy

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    I'm not an expert, but this is what how I think it goes:
    * Log on to CWD.
    * You will see a "New Chat" button (with big green plus) at bottom of screen. Click on that button.
    * There will be one field to enter the name of the new chat. Enter a name like "Dr. Z Experience" or something like that, and then click on the big button underneath that says "Start Chat".
    * You can then type stuff into the green field at the bottom.
    * I found it was good to set up a seperate window for the chat, you can do that by clicking on the triangle in the upper right hand corner, and selecting the "Popout to new window" option. Then it creates a new window kind of like Yahoo IM, or Microsoft Lync or any of those.
    * You can test all this stuff any time you want. So I would definitely set up a test chat (or use the existing "parents" or "general chat") to get used to the system.
    * Click on the "x" on the right side of your own chat, to delete it.

    Unfortunately, I can not attend this Friday. But I'm interested in how it goes.

    Joshua
     
    Last edited: Apr 18, 2014
  9. bijanrad

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    Got home earlier . Would you like to start the chat at 7:00 or sooner ? please let me know
     
  10. Ali

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    I could not participate in the chat. Can any one share in a brief few sentences the summation of the information shared. Thank you. Ali
     
  11. mo779

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    Any update on this? Any summary on the chat?
     
  12. joshualevy

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    I was not on the chat live, but someone was kind enough to send me a transcript. And no one who was actually there has replied, so here a "cut down" transcript. Basically, I removed everything that was not a direct question/answer or I didn't think was of long-term value, and changed the formatting to make it more compact:

    StillTypeI: Before the treatment did you have C-peptide and GTT done? If so, what were the numbers?

    bijanrad: Yes the C-peptide was about 4.5 . This means that she still had good function of the islet cells

    StillTypeI: Did Dr. Zhao share any data from the 150 or so other patients who have gone through this?

    bijanrad: No he did not . Reason mentioned . " Privacy"

    StillTypeI: Was there any cost to you associated with the procedure?

    bijanrad: Yes , The hospital charges were about $1000 and $5000 other payment to the Thieman

    eek: Hi, did you get a feel for whether or not any other participants are off of insulin? Is that the expectation?

    bijanrad: The chief medical doctor of the hospital knew of one or two cases that patients stopped insulin altogether

    StillTypeI: Did Zhao give any indication that these trials would be in the US? If so, when?

    bijanrad: He really wants to have them here in the states But the funding for the FDA approval is not there . I am hoping that he will receive the funding needed. The cost here is much higher than China . The Clean room is very expensive he said.

    StillTypeI: I know you mentioned this before, but what date this your child have this done?

    eek: Is this treatment better for newly diagnosed, or will kids who are no longer honeymooning have some benefit?

    bijanrad: For Still type I , My child received the treatment on 3/12/14

    for eek The treatment should be more effective for the "Honeymoon period" as the isle cells are not totally depleted.

    StillTypeI: You don't expect to see any benefit until June 12 or beyond?

    bijanrad: Honestly, We do not know. The AIC for our child is 5.7 and the fasting glucose level are between 90 to 120 . If she maintains these levels, I think the treatment is working . Fingers crossed

    StillType1: How much insulin was she using before the treatment?

    eek: Do you think that the result may be unpredictable, like a honeymoon period where the Bg can be hard to regulate?

    bijanrad: About 0.5 ml and she was also using the Lantus at night. She is not using the Lantus and she is still on 0.5 ml per day total

    bijanrad: Answer for eek. I think the ultimate test will be the glucose tolerance test . This was taken in China after the treatment and will be repeated number of times . This will show the health of the islet cells .

    StillTypeI: bijanrad are you in the US?

    bijanrad: Yes in California

    eek: What did they say are the risks involved in the treatment? Have they had any adverse reactions?

    StillTypeI: What insulin is she currently using?

    bijanrad: I think I need to repeat myself by saying that my comments should not discourage or encourage any one for this treatment. The risk involved are plenty. The core blood stem cell should be clean the procedure should be in clean room. The staff should be highly trained ..... other than this we need to consult with specialist

    Stilltype1 She is using the fast acting one

    StillTypeI: There are a few fast acting insulins
    Would you happen to know which one?

    bijanrad: No but wait a moment I can look
    Does Novestad sound about right?

    bijanrad: I will certainly post updates . Have a nice weekend .
     
  13. bijanrad

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    Thank you Josh for Posting the Chat. When we were done with the Chat, I hit "clear the content" and I had no copy of the text to post . In any event I will try to answer specific question from the group. I am hoping that this treatment will show good result and will lead to an opportunity for all to seek the same treatment here in the US. We remain optimistic.
     
  14. mmgirls

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    Do you know how many people have so far participated in the trial? I see an estimated enrollment of 100 and a completion date of September of 2014. Just wondering if they will meet or surpass the 100.
     
  15. mo779

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    Thanks for all the information so far. So just to be clear the cost of the total treatment itself was $6000, correct? And then all the travel expenses on top of that? I am asking because my daughter is in a somewhat honeymooning stage right now, and I am strongly considering this option. I am hoping and praying that it shows results on your little one. God bless.
     
  16. Christopher

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    Just to clarify, bijanrad's daughter is 17. And since she is very newly diagnosed, and already has an almost normal A1c, and is not using any long acting insulin and only 0.5 of fast acting, I am not sure what results the treatment could show except that she would not need any insulin at all. I guess we shall see.

    As for the cost I think you are correct but obviously bijanrand can confirm. It seems like an unusually high amount to pay. Normally in clinical trials, YOU are the one getting financially compensated! :smile:
     
    Last edited: Apr 28, 2014
  17. sszyszkiewicz

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    I could not be at the chat but wanted to ask the following questions.

    How long were you actually in china?

    What did you eat and how did the carb counting go?

    How did you deal with communication issues?

    How did you get there, and where was there?

    Again, i hope it works out for your daughter.
     
  18. mmgirls

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    This is a Phase 2 clinical trial and the youngest age is 14 that they accept. Not sure how old your child is, but wanted to make sure you knew.
     
  19. mmgirls

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    Is it possible to have your DD come and chat about this whole experience, what are her real hopes and expectations if she has any?

    It has to feel all so surreal for you family, but I truly hope that this treatment is the start of something wonderful for her and your family and that it maybe a future option for others.
     
  20. sszyszkiewicz

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