My Personal Experience in Donating Bone Marrow/Stem Cells…Fight Leukemia and Become a Donor

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Today, I’m not writing about anything that has to do with your finances. Instead, I’d like to talk to you about how you can possibly save a life!

I recently had the life-changing experience of becoming a bone marrow donor (more specifically, a peripheral blood stem cell (PBSC) donor). As I learned more about how many people need a transplant and how small the bone marrow registry actually is, I knew this was an issue I would become passionate about. I want to share with you how surprisingly easy the process is, and to get the word out to encourage everyone to participate!

In this article, I’ll clarify some of the misconceptions about donating and explain the process of my own experience as a donor. As I always say, knowledge is power, and I want you to feel informed and empowered to get swabbed at SwabMyCheek.com and possibly become a donor yourself.

You can also see more about my donation process in this 3 minute video I made, which documents my experience.

PBSC Donor

Since the bone marrow donation registry was established 25 years ago, there have been 50,000 donations. To put this into perspective, there are about 800 million active users on Facebook, but only 9 million people on the bone marrow registry. Each year, roughly 10,000 people need a bone marrow/stem cell transplant and half will never find a match. Of those that do find a match, 70 percent do it through the registry, while the other 30 percent is done through family members. The registry is therefore extremely important, making it all the more critical to get more potential donors involved.

There are two types of donations. One way, which I did not do, is called bone marrow collection. This is a one-day procedure in which you receive anesthesia and stem cells are collected through the back of the pelvic bone.  The other type is called peripheral blood stem cells (PBSC) collection, in which you take a 5-day course of medication that stimulates stem cell production, the stem cells are then donated through an IV. I’ve only had experience with the latter, so I can’t speak to the process of bone marrow donation itself, but I would like to explain the PBSC donation process and what it entails.

To get on the donation registry, all you have to do is get your cheek swab by going to SwabMyCheck.com, which means that the inside of your cheek is swabbed with a q-tip. That’s it! From here, the registry will look at your human leukocyte antigens (HLA), which are proteins that you inherit from your parents. If you have 8 or more HLA molecules in common out of 10, you’re considered to be a match. Swabbing puts you on the registry, and if you are found to be a possible match with someone who needs a donation, there’s an additional blood test to confirm that you are a true match. DKMS Americas, the bone marrow center I worked with, said that only 0.5 percent of those who get swabbed receive the initial call that they are a possible match, and from there, there’s only an 8 percent chance of being a true match and going on to donate. So, out of 9 million people on the registry, only about 3,600 will donate. This is why we need more people on the registry!

If you become a PBSC donor, you’ll get an initial medical check-up to make sure you’re healthy, and then you’ll take a 5-day course of a drug called filgrastim, which stimulates your bone marrow to produce and release a massive amount of stem cells into your bloodstream. After these cells are collected and transferred to the recipient, they’ll help him or her to produce their own marrow, making their recovery possible.

The 5-day course of treatment with filgrastim can cause some side effects for about 10 to 30 percent of people. The most common of these are bone pain, which was described to me as “flu-like symptoms,” and tenderness at the injection site.

Once you finish the course of injections and go for your donation, you’ll be hooked up to two IVs, one which draws blood out to be harvested for your extra stem cells, and the other which returns the rest of your blood back to your body.  Getting an IV can pinch a bit when they start it, but otherwise all you have to do is sit back and relax!

My Experience

When I got the call that I was a potential match, I was so thrilled for the news that I wanted to get started almost right away. I worked with DKMS Americas, which is the largest bone marrow donation center in the world, and I was amazed at how accommodating and helpful everyone I worked with was. The entire process was on my schedule and at my convenience, even though I knew there was someone waiting for these cells on the other side.

The health check-up and initial blood tests were very easy. Unfortunately, I got a cold the week before I started my filgrastim injections, so I was worried about being tired or worn out during the process. However, I was very surprised at how easy it was! While I received the first and last shot at the hospital, on the other days a professional nurse was scheduled to come to my office to give me the injections and answer any questions I had. On about the third day, I did experience a bit of stiffness and achiness, which reminded me of the period where I occasionally slept on the floor next to my daughter Abby’s crib when she needed company and wanted to hold my hand. On those days I would wake up a bit stiff in the morning, and the stiffness I felt from the filgrastim was the same.

On the fourth day and fifth (donation) day, I felt more tired than usual in the evening and ended up going to bed around 9pm, though I’m not sure if this was from the medication or just leftover tiredness from my cold. In any case, I was raring to go on donation day! It went as smoothly as I could have imagined. Everything was painless except for the initial pinch from the IVs, and everyone I worked with could not have been more caring, compassionate, and helpful. I spent most of the day at the hospital, arriving around 8:30am to do a final blood test, get the final filgrastim shot, and get prepped for the procedure. I went to breakfast from about 9 to 10am while we waited for the blood-work, and started the donation at 10:30am. I was hooked up to the machine for about 5 hours, and could read, work on my laptop, or watch TV. I was finished at 3:30pm and on my way home at 4.The next day, I woke up feeling a bit sluggish, which wore off after about an hour, and I was still able to go to work and get on with my normal everyday life.

Besides knowing I was possibly saving a life, the best thing about the process was being able to write a short note to the recipient of my stem cells. Even though any personal information is kept confidential, I was able to express my happiness that we were a match and to wish him good luck and a speedy recovery. I’ll receive an update about the patient at one-month, six-months, and a year. After a year, if we both are willing to sign a consent form, we can contact each other directly. It was really emotional to be able to get my best wishes on paper and to know that I was able to positively affect someone’s life in such a direct way.

Becoming a Donor

First off, all you need to do is go to www.SwabMyCheek.com and they will send you a swab kit in the mail. It’s that easy! You can also go to DKMS Americas or The National Marrow Donor Program online to find out more about the process, learn about the medical eligibility requirements. From this point on, each year you have about a 0.04 percent chance of actually being a match. The more people you encourage to join with you, the more possible matches we will have on the registry. Imagine that something so simple and relatively painless can have such a huge impact – Through a donation, you can help save a life.

You can also start a bone marrow donation drive in your neighborhood to encourage others to get swabbed. In a time in history filled with social movements, wouldn’t it be great if we could all come together and start a movement to double the bone marrow registry? To learn more about how to set up a drive, please feel free to contact me!

To learn more, browse through the websites of these great organizations, or watch the 3 minute (YouTube) video about my donation process. Let’s create awareness together! If you believe in the cause, post this on Facebook -YoutubeVideo Link- http://youtu.be/R4x0u0ONA_g  , email it to everyone you know and use any other social media you think is best. I have a personal mission to significantly increase the registry. I would really love to hear from everyone who joins the registry and if you are ever chosen as a match. If you have any lingering doubts or questions about the process, or if you get chosen and want to learn more, please feel free to get in touch. I want to help inform and empower you to take this step and get swabbed!

I would like to dedicate this article to Lindsay Ann Rawot, who passed away in 2011 from lymphoma. I would also like to thank Jen, Jane, Amanda, and my beautiful wife Sally for playing a direct role in getting me on the registry.

Please note that this article is about my own personal experiences and opinions. You should consult a professional to learn about all the risks involved and to see how donating would affect you.

 

Written by Bradford Pine
Bradford Pine Wealth Group – New York City Financial Advisors

The views and opinions expressed in an article or column are the author’s own and not necessarily those of Cantella & Co., Inc. It was prepared for informational purposes only. It is not an official confirmation of terms. It is based on information generally available to the public from sources believed to be reliable but there is no guarantee that the facts cited in the foregoing material are accurate or complete.

Comments may not be representative of the experience of other investors. Investor comments and experiences are not indicative of future performance or results. Views and opinions expressed in the comments section are the author’s own and not those of Cantella & Co., Inc. No one posting a comment has been compensated for their opinions.

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40 Responses to My Personal Experience in Donating Bone Marrow/Stem Cells…Fight Leukemia and Become a Donor

  1. Samanatha October 30, 2012 at 9:29 am #

    Bradford, as the mother of a child receiving a bone marrow transplant (actually, he’s receiving it as I type this), I would like to personally thank you for giving to someone in need of something so precious. If I could thank our donor directly, I would; and I hope to in the future, when we can find more information about him. I’m sure your recipient is so filled with gratitude for your sacrifice of giving up your time and comfort to help a stranger.
    Thank you on behalf of all families who have been so lucky to have found a donor match.

    • Bradford Pine November 2, 2012 at 5:39 pm #

      Samanatha, I can’t begin to imagine the emotions that you and Trevor must be going through. My thoughts and prayers go out to Oakley, he’s a true hero! I really think it’s fantastic that you are documenting the whole experience, which will tremendously help the people who will follow in Oakleys foot steps. More importantly, to one day show Oakley how strong he truly is. God Bless and may he have a quick recovery. All my best, Brad

      • Sandra February 11, 2013 at 7:11 pm #

        Hi Bradford,
        Did you research the long term effects fo the drug Filgrastim that is adminitered to the donors? I am a match and I am reading that there are inconclusive studies of the erm effects of the drug, in particular the possibility o developing cancer in the future. Therfore I am a little nervous about going to the process. Thanks

        • Nicole February 6, 2016 at 1:44 am #

          I too have been feeling the same way. I received the gcfs shot for a girl on oct 20. Recently I have been feeling bone pain (only in the arms and more so on the left side). I was told that indidnt need to worry bc the risks were so rare. Now I’m wondering if I had been swept under the rug due to the critical need of this granocite collection.

  2. Barbara Hawkins February 22, 2013 at 8:46 pm #

    I got my call today that I will get to donate PBSC on 3/19/2013. Your blog has answered most of my questions and I’m even more excited to have this wonderful opportunity.

    • Bradford Pine February 28, 2013 at 12:35 pm #

      Congratulations on your act of kindness… I think What you are doing doing is amazing!!! If you have any questions or concerns, please do not hesitate to reach out.

  3. Jessica March 7, 2013 at 12:02 pm #

    I signed up for the registry in 2010. I got a call three days ago I was a potential match, and went to do my blood work last night. I hope I am a match to help whoever is on the other end. I was told I had an uncommon HLA type which is why I was chosen, but it also made me realize if I am ever in trouble it will be hard to find a match for me. I’m really surprised when I talk to people about donating and they look terrified. The donation process has come a long way and it’s much easier than people think. We need to change the misconception, then I believe we can get more people to sign up 😉

    • Bradford Pine March 7, 2013 at 12:28 pm #

      Hey Jessica,

      Congratulations! I couldn’t agree more with your comments. I think it has to be done one person at a time, but it is starting to get more well known, especially after Robin Roberts’ situation. As a matter of fact, we just filmed a PSA for the Daytona 500. http://www.facebook.com/photo.php?v=10151442129019691&set=vb.31625604690&type=2&theater .(This is the 30 second version, a longer version will be out soon) I continually try to participate in things like this, in the hopes it will encourage people to get swabbed. Not sure how you ended up getting swabbed (on the registry) but people can sign up for the registry at http://www.SwabMyCheek.com and they will send you a swab kit directly to your house… It’s that easy! Thousands of people die every year because there are not enough people on the registry…If you have any questions please feel free to always reach out.
      Best of luck, Brad

  4. Amy Terry March 22, 2013 at 6:01 pm #

    I just received a call two weeks ago that I was a possible match for a child. I had blood work done last week and they are expediting the testing I was told. I am so anxious and hopeful that I am the match. I have a child the same age and I hope I’m able to help. I have so many questions and don’t really seem to find the answers. This blog post was helpful!

    • Bradford Pine March 25, 2013 at 10:13 am #

      Congratulations Amy! I completely understand what you are feeling right now. The reason I wrote this article and made the video about my experience was simple, I did not completely find the information I was seeking, when I initially found out. I also found that there is a tremendous amount of misconceptions about the process. If there is any questions/information I can help you with, please don’t hesitate to call.
      Best of Luck! Brad

  5. sally b April 26, 2013 at 10:38 pm #

    I just stumbled onto your website. I received an a-8 transplant from an anonymous donor. The transplant worked, and my cancer is in remission. Every time I pray, I pray for blessings to the donor. He has changed my life more than anyone could ever understand. Being a donor is one of the most gracious things a person can do. Nothing could possibly express fully my gratitude. I have to wait 2 yrs to find out if I can contact him. I owe a large part of the reason I am here living to him. I am amazed and humbled by the experience and cannot express the importance enough of donating. Please consider giving life.

  6. Rachel Humphrey May 22, 2013 at 10:54 am #

    Thank you so much for your article. My sister has multiple myeloma and we are getting ready to travel to New York’s Sloan Kettering where I will be donating stem cells to her. I have been trying to find articles that are written from the donor’s perspective – there aren’t a lot out there! This was very helpful.

    • Bradford Pine May 22, 2013 at 12:37 pm #

      Rachel,
      I’m so happy you found it to be helpful. If you have any questions whatsoever, please do not hesitate to call. My prayers go out to your sister, for a speedy recovery.
      All the best, Brad

  7. Luann June 26, 2013 at 2:10 am #

    I too donated my stem cells to my sister who also has multiple myeloma. I have 8 siblings so fortunately, there were 2 of us that were a 10 out of 10 match and 1 of my sisters was an 8/10. The process like you said was very easy. I gave myself the shots twice a day and really had no side effects until the night before my donation. I had the worst headache I have ever had but that was because my white blood count was so high; there was no need for my last shot at the hospital. Once I was hooked up and they got things rolling my blood count went down and my headache went away. The machine reminded me of a dialysis machine the way it filters your blood and separates it as it circulates through 3 times. I believe the Dr wanted to get at least 7 million cells. They ended up getting double that so they froze half to give her a “boost” if needed. It took 5hrs for the donation and 15 minutes for her to receive them once they were prepared for her. It was an experience I will never forget and I would do it again if asked. My sister was very, very sick at the time and I was honored to be chosen as her donor. She did well with the transplant and then got her “boost” of my other cells two years later Although there is no cure for MM, she was in remission for 9 months until recently. She has high risk factors that make it harder to treat so they never expected her to fully go into remission but we were thrilled that she did.
    We just threw her a surprise “5th Birthday” party to celebrate her new birth date as the nurses put it. She’s doing well but no longer in remission which means she’s on a low dose oral treatment.
    I would like to say thank you for putting this article out there to educate people. I was very nervous when I found out I was the donor but it didn’t matter, my sister needed me more than ever and I was going to do whatever it took to keep her around as long as possible. To Rachel, I wish you and your sister the best of luck. I am sending my thoughts and prayers to you both.
    God bless you,
    Luann

    • Bradford Pine July 17, 2013 at 1:17 pm #

      Hi Luann, Thank you so much for sharing your story! I think the more we speak about the process of donating and our own experiences, the more people will feel comfortable to get swabbed for the National Bone Marrow Registry. What you did for your sister is an amazing thing, stay positive and my prayers are with your sister. All the Best, Brad

  8. Nyel July 10, 2013 at 12:11 am #

    Hi Brad – Thanks for your article! I received a call roughly about 8 days ago that I am a possible match for an adult leukemia patient. I was completely surprised to get the call as I registered over 10 years ago! I can’t express how honored and humbled I am to participate in the process and I pray I’m a match. I give my 1st blood sample in a few days. I’m glad I found your posting as it has been helpful in letting me know what I can expect should I go through the PBSC collection.

    • Bradford Pine July 17, 2013 at 1:21 pm #

      I am happy to hear you found my my article and video helpful, educating you about the process. I’m thinking by now you must know if you were chosen as the best match(I’m hoping you were). Feel free to reach out to me with any questions or concerns you may have regarding the donation. Best, Brad

  9. LaTarsa Williams July 11, 2013 at 9:12 am #

    I signed up for the donor list back into 1999 when I was a college student. I’m not even sure as to why I signed but I received a call yesterday stating that I was a possible match for a guy in need. I didn’t think twice about saying YES I was still interested. As a wife and mother now my husband encourage me to do some research about the process, however all the while in mind I knew that I would honor the commiment I made. Once seeing your video and reading some of the post I know without a doubt this is one of the BEST and most rewarding things that I may ever have a chance to do in my life. Thanks for sharing this video.

    • Bradford Pine July 17, 2013 at 1:31 pm #

      I think I had the same reaction with my wife, I guess it’s a natural reaction from a spouse. In my mind I also knew no matter what I read in doing my research, I was going to donate. It’s not often if ever, you have a chance to save someone’s life. When I was chosen & did my research, I never really found what i was looking for, from the donors experience, hence the reason I wrote about my experience and created the video. Feel free to reach out to me with any questions you may have. All the best, Brad

  10. Brandon Schwartz August 31, 2013 at 8:40 pm #

    Bradford:

    My name is Brandon Schwartz, and I am a senior at UCLA, planning to attend medical school.
    I just donated PBSC two days ago for a 60 year old man with myelo lymphoma.
    It was a great experience.
    The neupogen injections did not hurt much and the procedure didn’t as well.
    I would love to promote the process more as well.
    I pray that my stem cells will be able to cure this man.

    • Bradford Pine September 1, 2013 at 2:10 pm #

      Hey Brandon,
      Congratulations! It’s an amazing feeling playing a part in the possibility of saving a life! Keep paying it forward and let’s hope others do the same. Good luck in your journey! Best, Brad

  11. Cody Allison September 11, 2013 at 9:33 am #

    Thanks for the information. I couldn’t find any other information out there that was this informative. I start injections tomorrow for donation 9-16-2013. I hope all is well with you and your recipient’s health!

    • Bradford Pine September 24, 2013 at 11:15 am #

      Thanks so much for reaching out! I hope your donation process went smoothly and you’re feeling well. If you have any questions or concerns, please feel free to reach out.

      All the best, Brad

  12. Melissa June 29, 2014 at 2:10 pm #

    Hello,
    My name is Melissa. I want to donate but I am so afraid that I wont be able to work, which I have to do. I also have severe migraine headaches and am afraid this medicine could cause me to start having them again. Is anyone else in this situation. I want to help SO BAD! Thanks!

    • Bradford Pine August 13, 2014 at 4:13 pm #

      Hi Melissa,

      My apologies for the delayed response, as I did not see this post! Not sure what decision you ended up making, however, I would strongly suggest speaking to a doctor in one of the transplant centers/hospitals. In the meantime, I would be more than happy to speak with you and answer any questions you may have. Unfortunately, I am not qualified to give you medical advice, however, I would be more than happy to share my own experiences with you.

      All the best, Brad

  13. Rhonda Kahgan August 25, 2014 at 11:53 pm #

    If I decide to become a stem cell donor is it possible not to get the injections of that drug
    and just let it take longer to obtain the necessary stem cells by staying in the hospital and
    giving more blood over a period of time. I am worried about the long term affects that the
    drug may cause in the future like cancer. Can you tell me about this?

    • Bradford Pine August 26, 2014 at 6:04 pm #

      Hi Rhonda,

      I understand all of your concerns and fears with the idea of donating. I am not qualified to answer these questions, and strongly suggest speaking to one of the doctors at a transplant center. However, in my opinion, I do not believe you can donate without one of those methods. If you are looking for someone to speak with, just let me know. I do have a contact name of someone who is extremely knowledgeable and approachable. If she is unable to answer any of your questions, she will know exactly who to direct you to. Best of luck!

      Brad

    • Nicole February 6, 2016 at 1:50 am #

      I was a GCSF reciever. I was told by Dr Wong at Chikdrens of DC the risks were really rare from a first time donor.

  14. Paula October 19, 2014 at 2:23 pm #

    I am on my 3rd of shots..tomorrow is my last day and October 21st..Tuesday is the transplant. I am a perfect match for my sister. I have read your blog and you have explained it all perfectly. I am having a lot of bone pain..but the goal of saving my sisters life is all worth it. Thank you for this blog. It really helped me by reading it. My birthday is tomorrow. ..so this whole experience is truly gratifying.

    • Bradford Pine October 21, 2014 at 4:02 pm #

      Hey Paula!

      Firstly, Happy Birthday! I am really pleased my blog post has helped you in this amazing act of kindness, that you have just performed. Saving your sister’s life will create a priceless bond that no one will ever be able to take away from you. In the future whenever you are having a bad day, you can always reflect back and know that you saved your sister’s life, which will always lift your spirits. All the best to you and your sister and may she have an easy and speedy recovery. Best, Brad

  15. Paula October 19, 2014 at 6:39 pm #

    I am a perfect match for my sister. I have 1 more day left of shots then transplant on October 21 2014. Your blog explains it perfectly. I am having a lot of bone pain..but saving my sisters life is worth it. Thank you for this blog.

  16. Hasi Grover November 20, 2014 at 7:45 am #

    Hi. I am from Thailand. I am a regular blood donor at Red Cross and while in the process of donating blood, one day i thought of registering myself as bone marrow donor too. I got a call from Red cross saying i have a match and am i still willing to donate my stem cells. I was overjoyed with the thought of being able to save someone’s life and immediately said Yes. I was given full information at Red cross about the method of donating. I went through physical check up too. Now next month in December,i would be doing this finally. I am a bit confused about which method should i choose. The one in which i have to go to operation theater and give bone marrow straight from my bone or the other way where i will be PBSC donor. The doctor is saying that my veins are small and they would inject the needle at my throat vein. Could you please suggest. If anyone has this experience. I am not scared of anything but just need to be guided. Thanks. Hope to get quick help..

  17. Carol March 1, 2015 at 8:48 am #

    Thanks for publishing your experience of being a stem cell donor, Brad. First off, I would like to thank you for your unselfish act of kindness! There are many cases of potential donors backing out when a match is found. It has to be heartbreaking to the person in need and their family. My sister was diagnosed with AML in 2013, two months before my father passed away. You can only imagine what our family was going through. This was also exactly one year after my brother passed away from liver cancer. My sister went through several rounds of chemo and was in remission for almost a year. The leukemia came back this past fall. She is now in remission and scheduled for a stem cell transplant in about 1 1/2 weeks. Her donor? ME! Both my brother and I were tested, and luckily I am a 100% match. I will start my Neupogen injections one week from today. Am I nervous? Yes…but not because of what I have to go through, but the long road of recovery my sister has. I have the easy part. Our family would be devastated if we were relying on a donor and there wasn’t one available. To you, and all of those fine folks who have donated or are on the list to be a potential donor, THANK YOU! To those considering signing up to be a potential donor, THANK YOU! I urge everyone to at least consider it. It can literally mean a lifetime to someone who may not currently have a lifetime within their grasp.

  18. Vanessa R. March 29, 2015 at 1:14 am #

    Hi Brad,
    I’m just wondering if you ever got an update on the person who received your bone marrow donation. I’ve been seeing a commercial of a cute little girl thanking people for her bone marrow and I’m really interested in becoming a donor. Thank you for writing about your experience. And thank you for donating!

  19. Monette August 5, 2015 at 5:42 pm #

    Thank you so much for sharing your experience. I’ve been selected as a stem cell donor for my brother and begin the injections this Saturday. Reading your story and the comments here has been a point of incredible inspiration and very empowering as I look forward to undertaking a similar journey.

    • Bradford Pine August 5, 2015 at 5:53 pm #

      I’m so happy you found the article helpful and inspirational! Here’s to your brother having a speedy recovery and look forward to any updates. Feel free to give me a call if you have any questions and Kudos to you!!! All the Best, Brad

  20. Siao Shick April 21, 2017 at 12:13 am #

    Just found this blog. Not sure if this is still active or not. I just received and email and call and letter that I might be a possible match. The thought of helping someone else is what is driving me to consider donating, but yet I am a little anxious about the possible pain and the procedure and any long term negative side effects. I’m trying to do some research now and found your blog helpful. I am still trying to decide if I want to go through the process. Any advice folks have for me would be appreciated. I’m nervous about this whole thing.

    • Bradford Pine April 21, 2017 at 4:23 pm #

      Hello Siao!

      Firstly, congratulations on being a match! Secondly, I understand your concerns as I had the exact same ones and this is exactly why I wrote about my experience (to try to help others). Some of your concerns can definitely be addressed and others, unfortunately are unknown variables. I would be more than happy to speak with you, in the hopes to help you make your decision… Feel free to give me a call (516-662-8616)

      All the best, Brad

    • Hasi Grover April 22, 2017 at 10:45 am #

      Hii dear. I donated stem cells two years back. The procedure for me was no pain at all. Red cross took really good care of me. I was admitted in the hospital and stayed there for three nights. First day collection of stem cells was not enough so i had to wait for the next day to donate some more. There is no side effect happening to me except to feel that i am much more healthier than before. When i got the Thank You Card from the family of the young boy whom i donated stem cells, The feeling i had that time is not in my vocabulary. To be a human and helping someone to get the gift of life is a Amazing feeling so i would request you not to worry for anything and just go ahead for this noble cause. You will be proud of yourself.

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