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This sounds a little off to me. I would get a second opinion right away. I have no experience with AML personally, but Inwould either request an appt with this doc to ask him in person or get a se one opinion at a center that specializes in MDS. You can email me if you would like at firstname.lastname@example.org
The drug made my blood lines , all 3 go very low. Had neutropenia for about 35 days. I took 2 cycles if it. Then went into transplant…..but remember everyone is different.
I had a transplant at 62. I had RARS too. I took Revlimid. It did not help. I also had 2 rounds of Dacogen and it did not help much. Had the transplant Jan 3, 2017. I am doing extremely well. My sister was my donor and a 100% match. I am very blessed. I have written a book about my journey but it may not be out til Dec. If you want more details please email me at email@example.com.
Typically MDS does not spread. It can morph into Acute Myeloid Leukemia if gone unchecked. In some fields of thought MDS is considered a pre-cancerous condition and not even called cancer. I am not a doctor, but that is what I have researched. Prayers for you and your mom.
On my our second BMT you said they said you have MDS. There are several sub-types of MDS with all having different treatment protocols and outcomes. I.e. my particular MDS diagnosis was RARS-Refractory Anemia with Ringed Sideroblasts. Your doctor should tell you what subvtupe you have. Are you treating at a center of excellence in blood cancers? A second is always the best in MDS. In my experience, by what you have described, this is not mild MDS. Sherry(firstname.lastname@example.org)
In my experience, Cancer Treatment Center of America.
It is near Chicago. Zion, Illinois. They saved my life and I gained more than a new life there. I gained a whole new family that I love now. Real geniuine people as well as top notch physicians and all staff who truly love what they do. Their main focus is YOU. The Mother Standard of Care in those facilities is unlike anywhere on this planet. That in itself facilitates healing. Pratt8075@aol.com
Your son has his age on his side. You are going through the worst part now. Do everything in your power to keep him germ free (from others) and it will allow his immune system to recover using his sisters cells and not having to fight off an infection too. I am 19 months post transplant and doing well. Always look towards the other side of his recovery. If you want to talk in detail email me email@example.com
A transfusion will help you feel better. Where are you being treated? I would go for another opinion.
Where do you live?
Please tell us your Father’s name and age. What specific type of MDS did he have?
Myra. 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.
I would go for second opinion pronto and see if both have same diagnosis. Go to someone /someplace that specializes in MDS.