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Sherry Pratt
ParticipantMyra. Go get a second opinion pronto. Your physicians should be telling you everything and sitting down with you and explaining every option available to you based on your age, health and disease type.
Sherry Pratt
Pratt8075@aol.comParticipantCherie,
I would go for second opinion pronto and see if both have same diagnosis. Go to someone /someplace that specializes in MDS.
Sherry
Pratt8075@aol.comParticipantPlease email me pratt8075@aol.com. Too much to type on here.
ParticipantI was told 5 years on Vidaza. I would get a second opinion. Email if you want to discuss in detail. Pratt8075@aol.com
ParticipantCarole, I am so sorry to read this. Everything you said is true. Get a second and third opinion if you have to. In many cases, MDS, can be cured with a transplant. I know not everyone is a candidate, but you don’t know until you ask and get to a center that specializes in them. When I went for my second and third opinion I never told my first doctor til afterwards! U am God led me down that path because I am pretty certain I would not be here to tell you my story I had I not. MDS is a very serious disease and yes it can progress into AML. Pratt8075@aol.com
ParticipantLocation of hospital? Is the doctor a specialist in blood cancers or does he work with all types of cancer? What is his first course of action based on the bone marrow biopsy reports. I am a FIRM believer in 2/3 opinions, and at least one of those should be from a center of excellence.
ParticipantJoseph. This disease acts differently in many people. Get him to a center of excellence . If you want more details of my journey with this disease,email me at pratt8075@aol.com.
ParticipantI had 2 caregivers. My older sister and my husband. They took turns in 3 week increments. One thing that really makes a difference is keeping a notebook. They wrote down my numbers, my mood, attitude, anything that happened during the day or night. The days often get blurry especially to the patient. Funny movies are a must, and walks, and paying extreme attention to medications when leaving the hospital. They can change daily. Watching for fever, making sure you wash your hands as often as the patient, keeping sick people away from the patient. Preparing the house for the patients return home. Keeping people away at first when you get home. Making people remove their shoes when entering the home and washing hands. Keeping people from bringing you food. Making sure you stay on neutropenia diet when necessary. The list is long for the caregivers. I am forever grateful for mine . I couldn’t be writing the book about my journey without their copious notes!
ParticipantI had allogenic. That was my question. I am wondering why he cannot have one. It appears to me if that protocol is not working the next step would be transplant. You can email me if you would like. Pratt8075@aol.com.
ParticipantChristina,
I had Mds-RARS and had 2 rounds of Decitabine that did not work, then had a transplant. I am not familiar with tMDS. What is that specifically?ParticipantClint, instead of being afraid, be diligent about finding a center of excellence in Blood disorders. Mds will be determined by a bone marrow biopsy. Have you had one?
ParticipantBetsy,
Absolutely get a second opinion as fast as you can. I did have a stem cell transplant and don’t know if they would do that given your Dads age, but
Get to a place that may have more options for him to try.ParticipantI am a health coach and had BMT IN Jan 2017. I follow the guidelines of my nutritional team. If you email me I can send you a document. Pratt8075@aol.com
ParticipantMy insurance covered the entire cost of my donor.
ParticipantMine were 5 days after my initial 5 days of infusion.
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