Just dx AA Please help! (Illinois)

[Cheryl P]

Anyone in Illinois with MAA?

[Ryan Jay]

I don't live near you, but I just got my dx last week and I'm scared as hell. I go in for ATG on Monday in Boston.

[Cheryl P]

Ryan,
Last week my doctor said I had AA and to look it up on the internet! I am scared too. My white cells are low and have been since 2007. Are you low in red, white, platlets or all 3? I don't know much about this because he said I have mild/moderate and to "watch and wait". Please let me know how your treatment goes and when. I will keep you in my prayers.

[susansr]

Dear Ryan Jay:

Good Luck! I was diagnosed in FEbruary 2010, had ATG at Dana Farber, still in wait and see mode this month of August. Have any questions, ask away!
SusanSR

[Ryan Jay]

Hey,

We should keep each other updated because we're newbies here. This forum is really a great place to learn.

I am low on all three. My whites hang around the low 2s, my reds in the 6s or 7s and my platelets are the worst...around 15-20.

You should keep an eye on your counts because mine have had hung around the low normal range and then took a dip.

I've had three biopsies in the last month too .

I'm so creeped out though. I am packing for a 5-10 day stay in the Lahey clinic for this ATG treatment. It's just such a pain having to get leave from work, make sure the bills are paid and the dog is boarded etc....

I am optimistic that I'll get through this alright.

Ryan

[susansr]

Originally Posted by susansr

Dear Ryan Jay:

Good Luck! I was diagnosed in FEbruary 2010, had ATG at BWH still in wait and see mode this month of August. Have any questions, ask away.

I am transfusion-free at this point but my platelets have not climbed enough. They remain at 30,000 and Hct at 28. Docs not sure what to do just yet. Available to offer any help since I'm a bit ahead of you.

[GretchenMW]

Cheryl,
I live probably around 3 hours from you to the west. Where are you getting your medical care. I am a 28 year survivor having been in remission for 24 years. I most likely had Moderate Aplastic Anemia. A transplant was being planned but I did not have an exact match within my family and there was no bone marrow registry at that time. I was diagnosed at age 14 and went thru a round of ATG and was on Cyclosporine for about 2 1/2 yrs. In the midst of those I also underwent many other types of treatments but the ATG and Cyclosporine worked for me.

Do you know about aamds.org? This foundation is a wonderful source of support, answers and hope.

Please reply if you would like to get in touch with me via email or phone. I know how very terrifying this disease is when first diagnosed. As you get more answers and participate in this support system, you will be able to cope.

[Cheryl P]

Ryan Jay- thanks for responding. I am looking forward to hearing a good report about your treatment at Lahey, which I believe is today. I would really like to keep in touch while you are going through this. As I mentioned earlier, you are in my thoughts and prayers. 3 biopsies in a month...why so many? How long did you have low normal numbers? I am so new at this, and it feels so surreal because I haven't been ill or anything. We just noticed slightly low numbers during a physical last year.

GretchenMW- I have a lot of questions for you! What does it mean 6.5 doses h-ATG? Does that mean you have had that treatment 6 times? And also you wrote many treatments in between... That is wonderful that you have been in remission for a long time. Is that "normal"? My email is cheryl.piercy@yahoo.com if you would like to write.

I am scheduled to go to Barnes in St. Louis on Wednesday for a consult. I made this appt. before my doctor diagnosed me with mild/moderate AA. As a matter of fact, he was surprised that I wanted to go since my numbers were "low but not anything special ." I asked for the biopsy and he said it would be just for "peace of mind". Then got results and have had anything but peace of mind!

Looking forward to hearing from you both, and anyone else who cares to chime in!

[Jayceechic]

I was recently diagnosed with MDS (July) and I'm scared as hell too and looking for information. I need a stem cell transplant and found out today that my only brother is not a match. I survived non-Hodgkin's lymphoma from 2007 only to be told last month that my body apparently didn't tolerate the chemo very well and now I have MDS. I'm only 41 and was just getting over the looking over my shoulder all the time from the previous cancer and now this.

My co-worker is an AA survivor - 12 years. He was treated at Johns Hopkins at Baltimore so there is hope for all of us here.

I just wanted to say hi so I wouldn't feel so alone today.

[Cheryl P]

I am so sorry to hear about your dx. I am so new at this that I am afraid I don't have a lot of information, but what I will give you is support and an ear to listen. I am 41 years old too, always been healthy, played college basketball and stayed active and can't believe this has happened to me. You can contact me through email if you ever need to talk. You are in my prayers.

[Robi1Knobi]

Hi guys...guess we are all in this together....All I can offer is stop eating fast food, food with preservatives, drink more water (1/2 your body weight in ounces), avoid chemicals on your skin, sleep at night, eat more fruits, berries, and vegetables, and try to do things that make you happy ). I'm not a transplant candidate, so these are things I've been doing to keep from getting worse. So far, I have needed 2 blood transfusions (last one in May), and don't want any more! best of luck to ya'll, and hope ya'll find some answers too. Hugs

[Ryan Jay]

Sorry guys,

I just got out of the hospital the other day.
I handled the ATG treatment very well. I had no rigors or fever at all. It was kind of relaxing. The only real discomfort was my feet hanging over the edge of the bed. (I'm 6'3") Ouch! And the $12 per day television fee at Lahey.

The nurses at Lahey were outstanding though, especially Paula. She was "that" nurse who had been there in the system for 10+ years and knew how everything worked. Anyway, she had 3 other AA patients in her career and all of them did well. She also spoke Portuguese, which was a plus in my book.

On a personal note, I'm a Spanish/German teacher (MA in Spanish linguistics) and was preparing a dissertation proposal when I got hit with this. Oh well!

I was having low counts starting in May. My AA dx took so long because I came back from Mexico with typhoid. The first crew of doctors attributed the pancytopenia to the typhoid. It ended up being a red herring.

Let's see, some of you had questions:

I had three BMBs because the first one was "too small a sample." (Done at a rural hospital)
The second one showed a "possibility" of hypo-MDS.
The third one confirmed that it was "just" AA. The doctor at Lahey sent the sample out to the Mayo and some other clinics to confirm AA.

I'm okay. I just feel really icky at times. My legs have a mild achy feeling
and my hips feel like I've just ridden on a bike for 30 miles. I'm also a little "foggy" too.

I am on such an array of meds right now. It's almost like a fourth meal that I have to chase down with that radioactive mustard. The steroids also taste like poisonous berries. Do any of you have any tips as to how to make the pill-popping go any easier? Hope the taper starts soon!!

I had another CBC done today:

HGB: 9.2 up from 7.6
Plat: 14 down from 20
WBC: .7 (I usually ranged in the low 2's until the ATG. This was at .5 on Friday) The doctors told me that a WBC drop is normal during ATG.

Well, thanks for your interest. This is such a great place for support!

[susansr]

Originally Posted by Ryan Jay

Sorry guys,

I just got out of the hospital the other day.
I handled the ATG treatment very well. I had no rigors or fever at all. It was kind of relaxing. The only real discomfort was my feet hanging over the edge of the bed. (I'm 6'3") Ouch! And the $12 per day television fee at Lahey.

The nurses at Lahey were outstanding though, especially Paula. She was "that" nurse who had been there in the system for 10+ years and knew how everything worked. Anyway, she had 3 other AA patients in her career and all of them did well. She also spoke Portuguese, which was a plus in my book.

On a personal note, I'm a Spanish/German teacher (MA in Spanish linguistics) and was preparing a dissertation proposal when I got hit with this. Oh well!

I was having low counts starting in May. My AA dx took so long because I came back from Mexico with typhoid. The first crew of doctors attributed the pancytopenia to the typhoid. It ended up being a red herring.

Let's see, some of you had questions:

I had three BMBs because the first one was "too small a sample." (Done at a rural hospital)
The second one showed a "possibility" of hypo-MDS.
The third one confirmed that it was "just" AA. The doctor at Lahey sent the sample out to the Mayo and some other clinics to confirm AA.

I'm okay. I just feel really icky at times. My legs have a mild achy feeling
and my hips feel like I've just ridden on a bike for 30 miles. I'm also a little "foggy" too.

I am on such an array of meds right now. It's almost like a fourth meal that I have to chase down with that radioactive mustard. The steroids also taste like poisonous berries. Do any of you have any tips as to how to make the pill-popping go any easier? Hope the taper starts soon!!

I had another CBC done today:

HGB: 9.2 up from 7.6
Plat: 14 down from 20
WBC: .7 (I usually ranged in the low 2's until the ATG. This was at .5 on Friday) The doctors told me that a WBC drop is normal during ATG.

Well, thanks for your interest. This is such a great place for support!

Dear Ryan Jay: glad you came through treatment okay; sorry no suggestions about pill. Worst time taking all that stuff; its better when some of the stronger drugs are eliminated.

I live outside of Boston. Was treated at Dana Farber. Love to know more about your experience at Lahey.

[Ryan Jay]

For the most part, I liked the Lahey clinic. There are some infrastructural things that they could work on: the $8 parking fees in the suburbs and the T.V. charge, plus the rooms are a little cramped, but in the end, the doctors knew what they were doing.

As an AA patient, you are kind of a little star for the residents. When they started up the ATG on Tuesday, I had about 7 or 8 people in my room with clipboards; then the "team" thinned out with every treatment until I became a virtual non-event by Friday.

For me, the toughest part was when they inserted that PICC-line. Youch! And those damned 4:00 AM vitals checks, when the steroids have finally worn off enough to where you can get some sleep.

[rose mcmillin]

Originally Posted by Jayceechic

I was recently diagnosed with MDS (July) and I'm scared as hell too and looking for information. I need a stem cell transplant and found out today that my only brother is not a match. I survived non-Hodgkin's lymphoma from 2007 only to be told last month that my body apparently didn't tolerate the chemo very well and now I have MDS. I'm only 41 and was just getting over the looking over my shoulder all the time from the previous cancer and now this.

My co-worker is an AA survivor - 12 years. He was treated at Johns Hopkins at Baltimore so there is hope for all of us here.

I just wanted to say hi so I wouldn't feel so alone today.

Hi Jayceechic, Just know that you are not alone we all one big family in this together. This is a great site. Lots of good info, support and comfort here. I as well as many others understand the panic that you must be going through. Mostly its fear of the unknown. I especially hate that this is your second go round with cancer. Please, Don't hesitate to ask any questions that you may have. I mean any. Take care of yourself and try to be positive in your thoughts. Rose

[mscrzy1]

Cheryl,
I was diagnosed with AA in 1996. I went through the ATG treatment with a complete remission. I've just now seen a dip in my counts. My hematologist was Dr. Edward Braud in Springfield, IL. He was fantastic and I definitely recommend him to anyone in IL battling this difficult disease. He is very blunt and will tell you how it is with no holds barred. I came to love him for it. I've since moved out of state and am now working with a totally different type of dr. that is more reserved. I'm finding myself frustrated because Dr. Braud was so open with his thoughts and was never shy to give me the down and dirty along with any possible rainbows and unicorns.