Please doctors . . . consider general anesthesia or higher sedation for bone marrow biopsies. I agree totally with the caller describing it as barbaric!

Thank you. Just recently told by hematologist I have CHIP, MGUS, and M Spike .56. I’m not old enough to retire. Am former smoker. Have secondary polycythemia and SLE. hematologist sent me to co-worker hematologist. He told me I am fine and there’s nothing to worry about. He said my results came back like that because I’m a former smoker and from dehydration. He told me to come back in a year. I would rather be tested sooner. Not sure what to do at this point.

Quite an amazing gentleman!

This is a very useful and understandable lecture on the continuum of normality to the sequence of disease process that ultimately can end up as AML. Thank you.

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Thank you

sir,what about hMDS del 20q?.please provide if any suggestion

Thank you so much for taking the time to post this. I hope you are doing well and I took time to pray for you and your family. You speak of a man with faith in God and I am sure that He is what got you to where you are today. My wife struggles with MDS and it truly is a daily struggle but we look to God for peace and strength daily. and you speak words of encouragement. God bless you,

Guys Im delighted your focusing on the low risk MDS.

Just found out I have MDS . Just wanted to learn what I have coming to me. I start Chemotherapy next week

Esta emfermedad se puede confundir con lupus? Ya que en Lupus también las cuentas de células bajan

Fantastic....my uncle has been diagnosed with MDS. I own her book "The First Cell" and I am trying to learn a bit more concerning this condition.

I hate that the hospital continues to send me letters to ask me to fill out my end of life wishes. My hemoglobin is currently under control using epotin injections, but what I want to know from others is their quality of life. Im dizzy, tired, and my bones are sore at 67. I had to retire but want to hear from my peers

Thank you for this very informative talk. My mother is 91, diagnosed with MDS 2015. She was watched until 2018. She has become very symptomatic in last 6 months. Hemoglobin is 94 I feel transfusion would be very helpful. Your thoughts?

Very knowledgable in her speciality.. I am looking foward to my son's evaluation with her... 2 years and still unknown diagnosis.. Thanks for all you do, Dr. Shimamura..

I’m a MDS patient and although I won’t be able to attend I look forward to watching videos of the conference. I wish you a successful conference.

My husband is platelet and red blood transfusion. He was diagnosed April 2016. He went on dialysis a year later. He was on Vidaza for 18 months and decided to stop Vidaza did not improve numbers and he was unhappy with the negative side effects. He gets blood transfusions if Hemoglobin is 8.0 or lower. His platelets typically are no more than 5 or 6. Sometimes they will be 1 or 2.

Great program ❤❤❤

I also had shortness of breath while on Reblozyl. After it was discontinued and started Azacitidine it went away. Fatigue accompanied the low Hb and Reblozyl therapy. Once my Hb got to 10+, no more sob and less fatigue.

With my low risk MDS most of the therapies worked for a while. I started with Aranesp. It worked for 3 years and 10 months. Atgam failed to work after about 4 months of hoping. Next, after Reblozyl was approved, I started it and got about two years before it faded out. It’s expensive but only required treatment every 3-4 weeks. Once it slowed my treatment was changed to Azacitidine. It’s a time demanding therapy but seems to be working. I have had three rounds and have a Hb of 9.5 so no transfusion has been needed for two months now. I guess the next stop is BMT. Eventually they all stop working.

I’m fortunate to have Medicare and a good supplement to cover all but deductible. I have a two hour drive to a MDS Center of Excellence, and with the cost of gasoline the drive costs more but it is worth every penny. I know I’m in good hands and they treat hundreds of MDS patients every week. Videos like yours and AA-MDS help by letting me know what to expect in my current and future therapy.

Looking forward to seeing and supporting (if I can) more research in the possible role the immune system plays in MDS as Dr. Rena Buckstein mentioned.

Thanks I learned a lot

Why not have a walk in fort Lauderdale

Are I have these mutations RUNX1 and TET2. Any trials interested in this….I am very healthy, ( With mild Neutropenia and thrombocytopenia at this point ) thank you

That was perfect, And Perfectly Said.. Thank You For That... Fort Myers, Florida

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So good! Several points were noted to discuss with my husbands new oncologist tomorrow

Thanks very helpful info !

Very informative, thank you!

Thank you Mr. Pearson.

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Saludos Hon Dr Guiillermo Garcis Mareno Se puede comunicar onlone

Saludos Hon Dr Guiillermo Garcis Mareno Se puede comunicar onlone

Ty for sharing 💓

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This is a very helpful video; I hope this brave man is still here, blessing the world with his positive words!

My husband has MDS . He has severe anemia and is being treated with retacrit injections.

My wife diagnosed today. Thank you for your story.

Imetelstat might be a cure rather than treatment.

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My condolences I'm going thru MDS now at 38 and I understand great video please check my video out Aroseforawareness

A wonderful friend, so full of faith, that has shown a positive attitude to all he meets. He has encouraged so many people who are going through the same disease and his love of the Lord shines through him. I am proud to have met you and may God continue to bless you.

My mom was just diagnosed today...thank you for sharing your story

Keep it up! Looking forward for more videos from you, don't stop!

Great video. Love speaking on these same topics. Here's a thumbs up! Keep spreading positivity and motivation :)

god bless you and thank you

Thank you, MDS Foundation for this video and my condolences. We can relate to trying to explain my husband Jim's condition. The stories are somewhat parallel, Jim diagnosed at 59 in 2014. Healthy, active, non-smoker, out of the blue. In 2015, with my daughter as the donor, Jim underwent a "Stem Cell Transplant". As difficult as it was, the chemo, radiation, blood clots, virus, weakness, neuropathy, Jim passed the milestone timelines, 100 days, 6 months, 1 year post transplant. His bone marrow was 100% donor. A routine bone marrow biopsy on October 31, 2016 showed 2% of Jim's cells had returned, a recheck two weeks later, now 15% of his cells returned, along with the disease, aggressively. The option now is to have another stem cell transplant. This time, with the possibility of not surviving the procedure, the possibility of more complications, no guarantee that the disease won't return again. The transplant center is 2 1/2 hours one way distance from our house. There are weekly or more visits required for pre transplant testing, then weekly visits for 3 months following transplant. The transportation costs, gas, tolls, we have to pay to park at the hospital. Then, the physician co-pays, each time he goes, weekly or more, a co-pay of $25.00 is billed to us. The hospital put us with a collection agency. The prescription co-pays for the numerous medications that he is sent home with. Now, due to changes in health care, we have a $5,000. deductible.Combine all that with the loss our business because Jim could not work any longer, loss of house, unable to pay bills, hospital social workers advice was "max out your credit cards", making minimum monthly payments with no credit left. We don't quality for any state assistance. The stress Jim's had, worrying about his family, while going through unimaginable treatments. We pulled through, we had Jim's health, our faith, our love, our family, our friends, and a new grandson, the light in our life. We were planning a trip out west this spring. Life was good. No complaints. Now be told, start over, and do it all again.