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Sandy,

I just read your article and it is simlply beautiful. Today was a hard day for me because my dad’s hgb just dropped from a 9.4 to a 6.9 within 2 weeks. It was just a blow both emotionally and mentally. But when I read your article, I realized I just need to pick myself up and continue to spread the awareness of MDS to anyone and everyone. Thank you for your ongoing crusade to find the cure for your husband and for all those families that are living with MDS. God Bless you.

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Hi Shar,
I don’t know if its a good thing but it seems that those with missing 5q has a better response to chemo such as Vidaza and Remlivid.

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Thank you all for the juicing tips! My mom bought a juicer from Costco although I told her that I wanted to buy the juicer that Christine recommended. But wow…. juicing is awesome! I can’t believe how sweet these juices are without even adding sugar! This week I will begin my dad on the green juices.

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My dad was dx with MDS early this year in Jan and he smoked up until that time. He began smoking at an early age at 15 or so and did until he was 71. He also has really bad eating habits as he loves salt, sugar, and all those processed foods such as sausages, canned fruits, etc. Also, last year, my dad’s work schedule was from 3p.m. to 3 a.m. He led an unhealthy lifestyle and I’m trying to incorporate fish, vegetables, and fruits into his diet but it’s been hard.

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Opps, I meant the specialist at “UCLA.”

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Jim, thank you for this post! I have started to use goodsearch.com. I will also spread the news to friends and family.

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Hi, I’ve read on various websites and forums that patients with MDS is best advised to treat at a Center of Excellence. I live in Los Angeles and my parents have insurance through Kaiser, where my dad is currently being treated at this time. I really love our current doctor as he is really compassionate and is really taking the time to answer all of my (billion) questions I take in every time we see him without showing any signs of irritation or impatience. I noticed the difference between our current hematologist and the past one my dad was treating under. My dad’s past hematologist was probably a nice guy but I didn’t feel comfortable with him and I felt as though he really wasn’t giving us his 100% and he was always in a rush to get us out, so we changed treating physicians. Our current hematologist came from the City of Hope in Duarte but I havent been able to ask about his past experiences w/ patients with MDS. But my question is…. what are your thoughts of not treating at a Center of Excellence? I want to make sure we have the best doctor out there to treat my dad so we can make informed decisions ourselves to decide which treatment we should proceed with next. Thank you in advance for all your advice!

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Gail, I am so sorry to hear about your mother’s passing. My thoughts and prayers are with you too….

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Thank you all for all your comments and sharing your experiences with me! I don’t know if nutrition has anything to do with MDS but all I know is my dad led a very unhealthy lifestyle. He ate a lot of processed, unhealthy foods, and smoked up until the time he was diagnosed with MDS. The only positive thing I can think that my dad did do is that he abstained from alcohol. I think I am going to buy a juicer tomorrow and start my dad on some organic green juices. I brought this up to my friend and she said that she thought she read somewhere that a lot of the green vegetables had a lot of iron. Any thoughts on this? My dad’s iron intake at this time is somewhere in the 290’s and it will only increase because he is transfusion dependent. All thoughts and comments are welcome!!! Thank you again! I wish I can express my gratitude to all of you better because I am really really thankful for any and all information.

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I am so sorry. I am still learning. Who would be eligible for a doubt cord sct? Is this something that I should bring up to my doctor?

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Hi Pierre, how old was your mom when she had the mini-transplant?

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G-masews, thank you for your post! That is amazing!!! 2 years and no symptoms! is your husband taking any alternative medicine?

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Patti,
I am so so so sorry to hear about your mom’s condition at this time. I will pray for your mom tonight for her recovery and that if it is her time to go, that she will not be in pain. Please continue to have faith at this time even though the light seems dim …….. Yours truly, June

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Btw Jim, for some reason I thought only my dad’s red blood cells were affected. The reason I am thinking that is because only his red blood cells are low and his white blood cells and platelts remain normal. However, the doctor did indicate that my dad’s white blood cells look a little “funky” and “abnormal.” I thought that this was the reason he was dx as RCMD? But the doctor also said that he is low risk because only 1 line of cells are affected? Hmm…. I think I will need to clear this up with our doctor. Any thoughts?

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Thank you all for taking your time to respond to my posts! I, too, see my glass 1/2 full and not empty!
Jim, my dad is 71 and will be turning 72 this May. I, on the other hand, am 27. My parents had me when my dad was 45 and my mom was 41. I guess I am a miracle child? Jim, I am sure that your children are concerned and scared right now. They are probably confused and trying to cope in their own way. But I have no doubt that they love you and want to see you healthy. I think it is great that you are being proactive and tackling this disease head on. Please continue to remain strong for your children.
In the beginning when I found out, I think I was in shock myself. My parents actually hid my dad’s condition from me up until 3 weeks ago. For the first week, I just cried my eyes out and asking God “Why us?”. But after the initial shock wore off, I started to take over the management of my dad’s health and have remained pro-active. I’m actually in limbo right now as I am awaiting for my bar results until I can finally be a licensed attorney, so I have all the time in the world right now to really learn and understand MDS. I don’t know what the future holds for my dad but all I know is, I want to do everything in my power at this time to do everything for my dad. My prayers and thoughts are with everyone on this forum. In the meanwhile, I am on a quest to find the best treatment plan for my dad. Thank you again to everyone on this forum!!!

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