I am an AA spouse and new to this site....

[trialad2]

Hello:

I am new to this site and in fact, this is the first time that I have signed on to a site to post anything. My husband has aplastic anemia, which was diagnosed in April 2008 at the Mayo Clinic. He was incorrectly diagnosed with MDS initially. He underwent immunosuppression therapy, i.e, ATG, cyclosporine, and steriods and was hospitalized for six days in Rochester. The cyclosporine made him extremely ill, nausea, lethargy, and metabolic kidney failure (also, the normal anti-nausea meds did not help his nausea...so we had to jump through a million insurance company related hoops to get Kytril for him to take). In July 2008, we went back out to Mayo and the treatment had not worked, the cellularity was 5%/95%, his T-Cells were sky high and his hemoglobin and platelets were low. We also found out that he had developed avascular necrosis of the femoral head in both hips as a result of the treatment, which was confirmed my an orthopedic surgeon back home, who told us both hips would collapse and need replacement within 2 years. In September, he went back to Mayo because of other complicaitons, sweating, dizziness, nausea, rash, etc. They could not figure anything out, but his counts were up and were low but stable. We went to the NIH in October for a clinical trial evaluation, but were turned down and not treated particulalry well. In January 2009, his right hip collapsed, much sooner then we anticipated. He had it replaced in Febraury, but during the surgery, he required immediate transfusions because his hemoglobin dropped from a 9.8 to a 7.1. He required additional tranfusions during his recovery. Our hematologist at Mayo wanted 4-6 weeks of blood draws to ascertain an "accurate" blood count reading...well, over three weeks his platlets dropped from 178 to 37 and his hemoglobin went down into the 8-9 range. His white blood cell counts are actually not low but high. Last week Thursday, he had another bone marrow extraction (his eighth in over 1 1/2 years) and we found out on Monday that the aplastic anemia was "back" (even though it never went into full remission because he could not tolerate the cyclosporine). We are going to repeat the ATG therapy again at Mayo but with a different drug then cyclosporine. He will require steroids again to avoid the serum sickness and I am afraid he will develop AVN in his knees or his shoulders. Also, I keep hearing conflicting information about a bone marrow transplant...one doctor says he is too old (48 years old), another out in Seattle told me that was not true, our local hematologist keeps bringing it up. All I know is that it is serious and it could kill him, but the ATG was so hard last time and he had so many complications. It is affecting everything, my job, our marriage, our son...I just hate this disease and everything with it...the uncertainity, the lack of substantial research and support (because it is not a "trendy" disease"). I just needed somewhere to vent about all of this and maybe this is a good place for it. If anyone out there is a caretaker or has AA, can you please let me know of your experiences and the effect it has had on your lives...I feel very alone, isolated even from my husband.

Thank you.

[Ruth Cuadra]

trialad2,

Welcome to Marrowforums. I'm glad you found us. I think you'll find a lot of useful information here as well as support from people who have been through what you, your husband, and your son are going through. It sounds like you've all been through the proverbial wringer since your husband's diagnosis. I was only 41 years old when I was diagnosed with aplastic anemia (later my diagnosed was changed to MDS and I had a bone marrow transplant in 1998) so I understand how devastated you must all be.

First thing to do is vist the Aplastic Anemia & MDS International Foundation on the web (or call them at 800/747-2820) and request their basic information packet about aplastic anemia. As a caregiver, you want to be as informed as you can about aplastic anemia so you can participate with the doctors in your husband's treatment.

As a patient, your husband should be in good hands at the Mayo Clinic. Since he has already experienced serum sickness and AVN, you should be questioning the Mayo doctors extensively about how they plan to mitigate those problems this time around.

He is definitely not too old for a bone marrow transplant. The best donor would be an HLA-matched sibling, but many people are successfully transplanted up to age 70 or so even with unrelated donors. If I were you, I'd want to get his siblings tested right away so you know if that option is open to you.

When is your husband scheduled for the second round of ATG? I hope you'll feel free to post your questions--and your vents--here. We'd like to help.

Regards,
Ruth Cuadra

[launch]

I'm sorry to hear about your situation... I've read a lot about the mayo clinic & you're definately in great hands! My husband was diagnosed with Myleodysplastic Syndrome (MDS) recently (Feb 2009). First it came as a big shock to us... and it changed our life style drastically. I'm 46 yrs old and my husband is 65 yrs this month. He was a type "A" kind of guy.... always wanting to get done "yesterday" what he could have delayed until tomorrow, lol... seriously. But, he became so run down so suddenly, etc... and we've gone from working together Mon-Fri, then, jumping in the car or catching a flight to a little weekend get-away, etc.... Traveling is my husbands hobby.

So, we've slowed way way down. I'm okay with that, but, he became very very depressed... etc. But, yesterday Ron just started he's real treatment and already he's "Lifted Up".... I'm so glad... it's not the meds working yet.... but, his spirit.... he now "Believes there's Hope"... before... he didn't...

I'm so glad you've found this forum.. they are so loving and awesome! They are so warm and encouraging!!! They continue to lift me up daily! And, the members have provided me so much valuable information!!!

Again, Welcome! Cindy

[trialad2]

Ruth and Cindy:

Thank you so much; I am crying already just knowing there are other people out there who are going through this. I am 32 and my husband is 48. It just seems like our life has been turned upside down by all of this; my husband is a difficult man to begin with and we fight over the most unimportnat things, like laundry, grocery shopping, even feeding our cats. I know or at least I think I know that it is an exercise of control because he has no control over this disease. He had never had health issues like this before...he was always up and doing things, the lawn, improvements around the house, etc. Now its just this illness over and he has had every complication it seems possible (though I am sure there are a ton more). You raise very good points about making sure that I find out what drug they plan on substituting for the cyclosporine because he could not handle it. I know it sounds awful, but I am dreading the treatment for him and the aftereffects, dealing with the PICC line, the weekly blood draws, the lethargy, the nausea and the bone pain he feels. He goes through a pain management center. We have been very lucky to find the doctor that we have at Mayo but sometimes I think he thinks of my husband as more of a puzzle he cannot quite piece together...he is a researcher first, a clinician second...but he has taken a significant interest in our case. He had us consult with NIH and Karmonos and has been so patient with my incessant questioning.

I did visit the AAMDS website after he was diagnosed and did receive the information packets. I am looking primarily for support for myself and to understand more about this disease and what other people have experienced.

Thank you for replying so quickly and your kind words....

[Hopeful]

Hi Trialad,

I am really sorry that you both have to go through all this. I am a big believer in the 2nd/3rd/4th/etc opinion, especially if you have an atypical presentation of a rare disease. If you don't mind hopping on a plane, I would recommend visiting Dr. Paquette at UCLA. He is "the man" for Aplastic Anemia. He is also very responsive to email (which you could always do first to see if it makes sense to go for the consult).

Hang in there!

[Dick S]

First off, WELCOME and please know you are not alone, we are with you and understand when no one else possibly can.
I know very little about AA as I have MDS, but I do know how deblitating the two diseases can be and can relate to some of the the symptoms your husband has and are going through.
Post here, ask questions and keep us up to date on his progress as we can all learn from each other. It is true we have the "not enough" disease. "Not enough" people have it, "not enough" research", "not enough" money for research, "not enough" doctors, " not enough" medications and "not enough" general interest to do something about it. But we can't give up. God knows I fight this disease every day of my life and at times it seems there is no end to it, but I can't give up.
You and your husband are now in my prayers. Let's see if we can't beat this thing together.
Respectfully.

[trialad2]

Well, we just got out of our local hematologist appointment and after consulting with our Mayo hematologist everyone is leaning towards ATG with cyclosporine and steriods again. We discussed Cytoxin, Campath, and bone marrow transplants but the doctors seem to think ATG is the way to go again,despite his complications from it last time. Maybe a lower dose of cyclosporine, why because it was so effective last time...I had to hear that he had a year of normal counts, which is not true considering he was not even diagnosed until April 2008. Even if the counts were stable, what about the complicaitons, the nausea, the dizziness, the fatigue, the sweating, his colon surgery, the AVN....I could go on and on and on because that is how I feel...like I am talking in a big circle...just like this disease. Why try ATG and if it does not work, why would he try Campath or Cytoxin, which the doctor claims are less effective? It just makes no sense to me whatsoever...Well, I guess there is no other choice but to go out to Rochester and see the doctor there and admit him to the hospital and start this circle all over again...

[Hopeful]

trialad2,

What were your husband's counts before and after his first round of ATG? What was his dosage on cyclosporine? How long was he on prednisone?

Although 48 is young for MDS transplants, it is considered riskier for AA transplants, which is probably why his doctors are pushing the IST again first. There is a great paper entitled "Making Therapeutic Decisions in Adults with AA" that gives a good flow chart of the current preferred treatments:
http://asheducationbook.hematologyli...full/2006/1/78

Many people relapse after their first round of ATG. It is not uncommon to have the second round stick - especially if he had a response the first time.

I wonder if there is an alternative serum sickness drug to prednisone to minimize the risk of further AVN? I know the side effects of prednisone last a while after a person stops taking the drug, and it sounds like your husband had the worst of them Also, you may want to discuss the option of using ALG instead of ATG, as it has reportedly fewer side effects.

There is a very active AA forum that you may want to check out for more advice:
http://aplasticcentral.com/test/toas...n=topics&fid=2

Keep believing!

[michelle_lapuz]

I am sorry to hear about your husband's diagnosis - the first year is an emotional roller coaster but things seem to 'settle' down after you learn to live with the disease and take things day by day. Like your husband, I didn't respond to ATG the first time and had extremely horrible serum sickness. I also had high dose steroids for about a month and a half post treatment to keep the serum sickness from coming back. Three months out, no signs of remission - the doctors tried to convince met to go the 2nd ATG route but the serum sickness was keeping me from making that decision. I also had a decent match for an unrelated BMT but couldn't commit because I had a feeling things would just turn around as quickly as they came on. In fact, the white blood cells started to make a reappearance 6-7 months out and around 9 months the red blood cells started to make a slow climb. By 1-year I was no longer transfusion dependent. The platelets still haven't come back but I just have to make small changes in my lifestyle to make what little I do have work. Things will work out for you and your husband, you just have to believe that in the future things will be better because they have to be By the way, considering the relatively short treatment with strong steroids isn't it strange to have the hip failure?

Michelle

[helen c.]

hi this is an update on my husband william we went to his oncologist yesterday and his hemoglobin was 11 his white count was 4 and his platlets were 47 so no vidaza this week he got a aranesp shot.hopefully next week. he went to his ortopediast today b/c of the hip and groin pain and finally we have a dx. avascular necrosis in both hips the right one being worse so he wants to do total hip replacement of course with consult with onconlogist also she brought up yesterday about talking to a transplant dr. that was before we knew about hip replacement he is 67 years old and in a lot of pain he does not know what to do