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Old Tue Sep 2, 2014, 12:30 PM
MtnGal MtnGal is offline
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Join Date: Nov 2012
Location: Golden, CO
Posts: 10
Thymoma and SAA

Rentzi,

Greetings from Colorado! My pal, Kevin (known as KMac on this forum) alerted me to your message.

First, let me reiterate what Neil said. Your husband has indeed made it past two very important milestones in this aplastic anemia journey: a good diagnosis and what appears to be a good response with no side effects to the ATG treatment. And, no, your husband probably won't be back to work in a month or so. Even if he feels pretty good, with his increased risk of infection, I'm sure his doctor's hair would catch on fire if your husband even suggested going back to work so soon!

And with MWF labs and transfusions as needed, your husband's job title is going to be "professional patient" for a while. As Kevin always reminds me, "This is not a disease for the impatient!"

And, please, do listen to Neil's advice to take care of yourself as well as taking care of your husband. I sometimes think this disease is harder on our caregivers than it is on us. We just take meds, give blood, get some back and basically do what we're told. You do most of the researching, worrying and nagging. That takes a toll on both your physical and mental health. Be kind to yourself!

The reason Kevin alerted me to your message was your comment about a thymoma possibly causing this disease. I was diagnosed with a thymoma about a month ago after my hematologist sent me for a CT scan because I was having chest pain and shortness of breath. I was also requiring RBC transfusions at a higher threshold level (<30 hematocrit) than their average patient to control those symptoms.

My hematologist's office (Colorado Blood Cancer Institute in Denver) does not do routine CT scans for aplastic anemia patients unless the patient is headed straight for transplant. I was diagnosed back in November 2012 at age 56, had ATG and was doing great. After six months, my blood counts were, for the most part, in the normal range and I had almost completely weaned off the cyclosporine by the end of 2013. January of this year, however, my numbers started to tumble so I am now back on ~400 mg cyclosporine a day and having RBC transfusions every 4-6 weeks.

My doctor was thinking I relapsed because we'd weaned off the cyclosporine too quickly. Now we're (or should I say "I" -- he won't commit at this point) thinking that this undiagnosed thymoma may have caused the relapse if not the original disease. I've been doing a lot of research (as I'm sure you have, as well) and it appears thymomas are implicated in all sorts of autoimmune diseases, including, very rarely, aplastic anemia. (I just had to laugh when I started researching thymomas. They are very rare tumors, rarely implicated in aplastic anemia, which is itself a very rare disease. With these odds, I should be winning the Lotto don't you think?)

I'm scheduled to have the thymoma removed in November and hoping that will turn around this relapse. (My doctor isn't promising anything.)

Anyway, I will keep both of you in my thoughts and wish you strength and courage (and patience!) as you tackle this disease. It sounds like your husband has a great team working for him (you being his #1 advocate!) and I'm glad you found Marrowforums. There's a great group of people on this forum and we're all pulling for you!

Joyce
Diagnosed VSAA 11/2012; treated with ATG/CsA; relapsed 1/2014, currently on cyclosporine & RBC transfusions every 4-6 weeks.


p.s. If you'd like to communicate privately via messaging on this site or by email, I'd love to hear from you. I've got tons of articles I could share about the relationship between thymoma and AA. I need to go check my settings and make sure I'm set up to do that, but will get those options activated as soon as I post this message. http://www.marrowforums.org/faq/communications.html
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