Newly diagnosed

[Itchy]

I am new to this forum and just officially diagnosed today. I have sero negative RA and my blood counts had been off all year. In June my rheumatologist said she wanted to send me to a hematologist because things were getting worse and I now had macrocytosis.
I a, a 49 yr old female. The hematologist suspected MDS but after 2 BMB in June, she stated I had 14% blast cells but could see no definitive dysplasia and therefore could not diagnose me. She thought my bone marrow failure was due to my taking methotrexate for over 10 yrs for my RA. I had quit taking methotrexate in Oct 2012. She decided that I should take a wait and see approach because she felt my bone marrow would regenerate on its own.
I decided I was just not very comftorable with the wait and see with 14% blasts. I contacted MD Anderson and made an appt for July 15th. I had a complete work up, including a third BMB. This morning I met with my Dr and his team. I now have 18% blasts and confirmed a diagnosis of MDS. He also said I am so close to having AML and could possibly have AML.
I am flying home tomorrow to the east coast but I am returning on Monday to start treatment here at MD Anderson. My best option is starting intensive chemo with isolation at the hospital. Most likely I will eventually have a stem cell transplant.
Any advice appreciated
Itchy

[celebrations]

Hi Itchy,
I am not from your place, but what I have heard is that MD Anderson is well-reputed. You are right with 18% blasts chemo&SCT is the cure option. All the best to you. I was diagnosed with MDS at 49 either, I am 56 now and still going strong 😉
Bergit

[Itchy]

Thanks for your reply. It is nice to know someone else is out there.
I have a couple of questions if anyone happens to know. I know go to MD Anderson on Thursday morning to have an echo of my heart, then up to 8th floor, the leukemia floor to meet with my Dr again and then will be admitted and my journey will begin.
I am starting to try and figure out what to pack or not to pack. I will be in protective isolation there, which for MD Anderson means nobody is allowed into my room except Dr and his staff. I ha e been told that I can bring my iPad and cell phone. I knit a lot and they said to bring my knitting, I am sure I won’t feel like knitting but I am going to be very positive and pack a few projects. I think I will pack at least 15 sets of PJs and lounge wear and when I feel well enough I will dress, but otherwise just wear hospital gown. I will not have anyone there from family everyday, they can do my laundry but hospital won’t. I figure it is not at all worth my family sitting in Houston when all they can do is look at me thru a glass window. I think I will feel like a fish in an aquarium and would rather them continue with work and taking care of dogs and house. We will be able to FaceTime, text, and email, I think I would rather see them on FaceTime than staring at me and they can’t come in.
Anyway, are there any suggestions about what to bring and what not to bring?
Warmly,
Itchy

[mogs T]

well i dont know too much about a long term stay…but i do know that when i am at the hospital every two weeks for five days with my husband….i devour books.

[wifey]

@itchy my husband is waiting for a BM donor now so we are facing the same isolation in hospital as you. Do you have a designated caregiver? Family or friend? Is face time the same as Skype? I have skype and he will probably use that. Let me know if you think face time is better. I hope your chemo and BMT transplant goes as smooth as possible with no problems. I have also heard MD Anderson is a fantastic hospital. Keep in touch with us here when you feel like it. I will be interested in your progress.

[Author]

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