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New to site
Hi. I've created a profile. I have been a lurker, reading your stories. My story is just the waiting game, which has essentially paralyzed me.
Re: New to site
Hi Tricia - Thank you for all the details in your profile about your myeloma journey so far. I am really interested to hear more about your experiences -- what's happened, what you have learned, and even the questions you still have. I hope you are permanently out of "lurker" mode, and we'll be hearing more from you here in the forum.
Have you been happy, by the way, with how you've been treated at MD Anderson? I know the hospital is very respected, but I haven't heard many people talk about their experiences, either in a positive way, or in a negative way.
Have you been happy, by the way, with how you've been treated at MD Anderson? I know the hospital is very respected, but I haven't heard many people talk about their experiences, either in a positive way, or in a negative way.
Re: New to site
Hello Ricardo,
I read in an article on this site that one of the hardest things is the waiting game, well that is where I have been since March of this year. After we discovered my second auto was not successful and now my doctor wanted to hurry and proceed with the allo or at the very least hurry and find a donor. I was in a whirlwind once again, all of my treatment up til March has been hurry, hurry, hurry and now it's waiting and more waiting. I am very fortunate my one and only sibling is a perfect match, I would not do the allogeneic transplant if my sister was not a match. The unrelated donor mortality rate is too high for me.
MD Anderson is awesome. They definitely have their glitches, but overall the professionalism is outstanding. They have every i dotted and t crossed. Whoever is in charge is doing a great job. I always felt very safe there. I always felt I was getting the best treatment. When I was released to come home to Corpus Christi, it always scared me a little, separation anxiety. My stem cell transplant doctor will personally call me every so often, how's that for nice!
At the moment I am not receiving any treatment and my multiple myeloma is definitely not in any kind of remission. I am sure my numbers don't look good. I have taken a little self-imposed break, sick of doctors and hospitals. I will need to call my oncologist tomorrow.
I am just so ready for this to go away. I feel like I have no life and I am paralyzed.
Everything will be so perfect if I can get into the MD Anderson program. Again, I am waiting.
I read in an article on this site that one of the hardest things is the waiting game, well that is where I have been since March of this year. After we discovered my second auto was not successful and now my doctor wanted to hurry and proceed with the allo or at the very least hurry and find a donor. I was in a whirlwind once again, all of my treatment up til March has been hurry, hurry, hurry and now it's waiting and more waiting. I am very fortunate my one and only sibling is a perfect match, I would not do the allogeneic transplant if my sister was not a match. The unrelated donor mortality rate is too high for me.
MD Anderson is awesome. They definitely have their glitches, but overall the professionalism is outstanding. They have every i dotted and t crossed. Whoever is in charge is doing a great job. I always felt very safe there. I always felt I was getting the best treatment. When I was released to come home to Corpus Christi, it always scared me a little, separation anxiety. My stem cell transplant doctor will personally call me every so often, how's that for nice!
At the moment I am not receiving any treatment and my multiple myeloma is definitely not in any kind of remission. I am sure my numbers don't look good. I have taken a little self-imposed break, sick of doctors and hospitals. I will need to call my oncologist tomorrow.
I am just so ready for this to go away. I feel like I have no life and I am paralyzed.
Everything will be so perfect if I can get into the MD Anderson program. Again, I am waiting.
Re: New to site
I'm really glad to hear that you've had a good experience at MD Anderson. I know it's considered one of the country's top cancer centers. I just haven't heard much from patients about the kind of care you actually get there as a "customer."
Someone should suggest to the Beacon that they create a way for people to post feedback about specific treatment centers so that future patients can get personal perspectives on the all the different centers. That would be really helpful.
Are the people at MD Anderson optimistic that they'll be able to find a way for you to get an allo transplant?
I don't know what to say about how to handle the waiting. I would think that one of the challenges is making sure you spend the time doing things that are relatively important. It's probably really easy to get overwhelmed by everything that's happening and then, before you know it, you've spent days and days doing stuff that really isn't all that important or constructive.
Are there any particular things you've found helpful to do to deal with the waiting and uncertainty?
Someone should suggest to the Beacon that they create a way for people to post feedback about specific treatment centers so that future patients can get personal perspectives on the all the different centers. That would be really helpful.
Are the people at MD Anderson optimistic that they'll be able to find a way for you to get an allo transplant?
I don't know what to say about how to handle the waiting. I would think that one of the challenges is making sure you spend the time doing things that are relatively important. It's probably really easy to get overwhelmed by everything that's happening and then, before you know it, you've spent days and days doing stuff that really isn't all that important or constructive.
Are there any particular things you've found helpful to do to deal with the waiting and uncertainty?
Re: New to site
Ricardo, thanks for your suggestion. The Beacon has a Treatment Center Directory, where we have included myeloma centers as well as comprehensive cancer centers. We are working to provide extensive information about each center, including a list of their tests and procedures, reputation and safety ratings, myeloma specialists and their research, as well as patient and physician testimonies. We highly encourage readers to click on their center in the directory and to leave feedback about the center and/or their physician.
Tricia, we are so happy that you joined The Myeloma Beacon community and that you shared your story with us and our readers. It's wonderful that your sister is a match, and we hope your allogeneic transplant gets approved, goes well, and is effective. Thank you very much for your feedback about MD Anderson. We are glad to hear that you are very happy with your treatment center. If you would like to post parts or all of your feedback on our MD Anderson article, I am sure that many readers would find it very helpful. Right now, the article only includes very basic information, but we plan to expand it in the near future to include much more information about the center.
Tricia, we are so happy that you joined The Myeloma Beacon community and that you shared your story with us and our readers. It's wonderful that your sister is a match, and we hope your allogeneic transplant gets approved, goes well, and is effective. Thank you very much for your feedback about MD Anderson. We are glad to hear that you are very happy with your treatment center. If you would like to post parts or all of your feedback on our MD Anderson article, I am sure that many readers would find it very helpful. Right now, the article only includes very basic information, but we plan to expand it in the near future to include much more information about the center.
Re: New to site
Trish, I empathize with your feeling "paralized", I felt the same when i was diagnosed 7/09. Luckily after a few months I came out of my funk, I hope for you to do the same! I am 7 months past ASCT and I feel almost back to my pre diagnosed self. I just keep myself leveled by talking.
All the best to you
Mike Benson
All the best to you
Mike Benson
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MBenson
Re: New to site
I would like to add positive comment about MD Anderson Cancer center of Houston Texas. I have been treated for my multiple myeloma there for five years. I am 66 years old so this is an accomplishment. It has been four years since my allo transplant from my brother, done at MD Anderson. They are so nice, so good, and help you in any and all areas of issues, beyond the disease. Every level of people there are top notch. They are so respectful, record keeping is flawless with their systems. I live in Florida but am so glad that my research found the huge amount of transplants they do, with better than average results. It was not easy to go there for my auto, my allo and soon my third transplant, but I highly recommend this facility and more importantly, the dedicated people there.
Hugh
Hugh
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Anonymous
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