[Sherry Pratt]

Brent.
Email me at pratt8075@aol.com
Second opinions are a must.

[Sherry Pratt]

I had MDS for about 6 years before having a stem cell transplant. If you would like to email me, I can tell you more about my experience. Pratt8075@aol.com

[Sherry Pratt]

Allan. I too had MDS RARS. I did get floaters and felt dizzy sort of lower more tired when my HGB would drop. After 2 years in my HGB got down to 6.5. At that point you really feel it. I got a stem cell transplant on Jan 3, 2017. Hgb now up to 13 and 14 sometimes 15. Almost back to normal as far as I feel. Feel free to email if you like. Pratt8075@gmail.com

[Sherry Pratt]

Mark, please email me. Pratt8075@gmail.com. Use subject platelets

[Sherry Pratt]

I was diagnosed with same disease 3 years ago. I too was a wait and see. Had I waited much longer I was told this would have become leukemia. In Jan I had a stem cell transplant using my sisters stem cells. She was a perfect match. My hemoglobin got as low as 6 prior to this? I went to the cancer treatment center of America in Zion, Il. I highly recommend this place. I am now in remission. HGB is now 13.

[Sherry Pratt]

Lisa, what is your mothers age and overall health?

[Sherry Pratt]

Janice, I would be concerned for sure. You are definitely could be neutropenic and would want to eat accordingly. I would get a second opinion with an MDS specialist. email if you need any help pratt8075@aol.com

[Sherry Pratt]

Valerie, I just had a stem cell transplant in Jan at the Cancer Treatment Center of America near Chicago. I am doing really good and will be going home in April. This place is like no other. Send me an email if you would and we can talk more. Pratt8075@gmail.com. Sherry

[Sherry Pratt]

I recommend that you get to a center of expertise. you can email me at pratt8075@aol.com. I am an MDS patient and currently on Dacogen but I am scheduled for a stem cell transplant in the next month. My sister is a 100% match for me and they are doing all her testing this week.

[Sherry Pratt]

Jeff,
Get your dad to a center of expertise on blood cancers. I highly recommend the Cancer Treatment Center of America in Chicago. They are excellent here and will find out what is wrong in a day or two. I know it may not be close to where you live but if you insurance will cover, they will fly you here for an evaluation. The place is awesome.

[Sherry Pratt]

I am so sorry about the loss of your wife. I would suggest that anyone who goes to a doctor and gets blood tests should demand a copy of the results which will show your values along with the normal values. Anytime you are off on the numbers, you need to seek specialist help. Question everything and demand a specialist see you. Many times you have to just take over your own health care. I am sorry for your loss, but there are stem cell transplants that help many MDS patients. I have met many survivors, but all circumstances are different as all patients are different. I know this doesn’t help you now, but to others that may be reading this. Always look for good hospitals that excel in the stem cell transplant process.

[Sherry Pratt]

I took Revlimid and it did not help me but it may help you. I would call the Cancer Treatment Center of America in Chicago where they specialize in stem cell transplants. I am here now for mine. This place is awesome. You can call and get a second opinion and just see if they can help you.

[Sherry Pratt]

Lynn, You are still young. I think you should consider calling the Cancer Treatment of America in Chicago. They are experts at the stem cell transplant process. Also you should have a match out of the world wide database. It is worth a call and a one trip there to see what they say they can do for you. I am totally impressed with this facility as I am here for a stem cell transplant. This is an awesome place where you can actually stay in a condo like room in the hospital while you are outpatient. They treat you like you are their mother. I would sure call them.

[Sherry Pratt]

jfairchild,
I had 5 days of Dacogen starting 15 Sep. I felt great right after the infusions. Went home from my center where I am being treated in Chicago. After 2nd week all my numbers began to drop. My red blood cells got into the 6’s, my platelets dropped all the way to 11 and my white blood cells to nearly nothing. I am back in Chicago and today is the 26th of October and my white blood cells are still struggling to climb back so I can get my second round. You must remember, everyone responds differently, because everyone’s bodies are different. Most important thing is to KNOW those numbers. You must know the HGB the absolute neutrophils (part of white blood counts that determines your immune system), and your platelets. Are you getting frequent blood tests to determine those levesl?

[Sherry Pratt]

Wash your hands, wash your hands, wear a mask in public and be vigilant in personal hygiene. This can lower your nutriphils (white cell count)…….you become immune deficient and need to be very careful about where you go, washing hands is key and just thinking ahead. Soap and water, all day long. Take the anti-nausea meds, and always always ask questions when you have them. Read about neutropenia, which is what you will be when your nutriphils are below 1.0. Know your numbers. Food is VERY IMPORTANT ALSO WHEN YOU ARE NUTROPENIC. No raw foods, no under cooked meats, no undercooked shell fish No fruit and salad, fresh. Only cooked fruits and veggies until you go back up to 1.0 and above.. And don’t let your dog lick your face……he can bring in germs from outside…..no gardening. Just be vigilant and try to think ahead of this. If the vidaza brings up your red blood cells you won’t need to be transfused….you will get through the nutropenia and low platelets…..just be aware, know your numbers and ask questions….be vigilant.

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