New diagnosis, what questions do we ask?

[trudeaubear]

Hi there

I just found this site and am so thankful. My Mom, who is 67 years old, was just diagnosed with AA. She lives in Canada and my sister and I and our partners live in Australia.

She is still in the hospital and feeling fine, she went in for nose bleeds and following a number of tests and a bone marrow biopsy, the hematologists working with her is very good. They are going to wait for the last few tests to come back and then begin thinking about treatment.

This is all very new and very scary for all of us. We have begun doing a lot of reading about the disease. I guess for this intial time I want to make sure we are asking all the right questions of the doctor. Can people please give me some suggestions on this?

We are trying to decide what we need to do, do we move home, how will this affect her, what support will she need. All of those things.

Any information would be so helpful.

Thank you!

Lianne

[Ruth Cuadra]

Welcome, Lianne.

You've come to the right place! It can be very scary to hear a diagnosis like aplastic anemia, but I think your best weapon against this unknown is information. If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation (click on Diseases & Drugs, then on Educational Materials) and order their information packet about aplastic anemia. It will help you learn more about what your mother can expect and how to communicate with her doctors effectively.

You'll want to ask her doctor about the particulars of her blood counts. The red blood cell (hemoglobin) count, white cell count, and platelet count are the most important. Aplastic anemia can affect the counts differently in different patients, but it is most likely that her counts will be below normal in all three areas. Is she going to be receiving blood and/or platelet transfusions? If so, you want to be sure that she receives "irradiated" and "leukocyte-reduced" blood products. These are processes in which the blood is treated to remove antibodies that could cause a reaction when the patient receives the transfusion. In the case of aplastic anemia patients who might receive many transfusions during their treatment, it is important to limit their exposure to these antibodies so they don't become overly sensitive to blood products.

Aplastic anemia is generally thought to be an auto-immune disease. This means that, for some reason we don't fully understand, your mother's immune system is attacking her own bone marrow causing it to malfunction by not producing enough blood cells. The most common treatment is to suppress the immune system so that it will stop attacking the bone marrow and allow the bone marrow to regenerate. It is likely that your mother will be treated with a combination of immunosuppressing drugs: ATG (anti-thymocyte globulin), cyclosporine, and prednisone. ATG is administered intravenously in a hospital over a period of a couple of days. The patient requires careful monitoring but it is generally well tolerated.

It is also likely that your mother will need some help at home after ATG. I was treated with ATG in 1996 following my diagnosis with aplastic anemia and I remember that it was very hard to do the simplest chores because of the fatigue. I was not so much "sick" as just very tired and weak at the beginning.

Having someone who can go with her to doctor's appointments to help listen and interpret is also very important. There is a lot of jargon to understand and the worry/fear make it hard to listen carefully. You and your mother should not be afraid to ask the doctor to repeat information or give more explanations until you are sure you understand--and the doctor should be willing to do this.

Please don't hesitate to post your questions and concerns here. There are many members who collectively have more experience dealing with aplastic anemia that most doctors do--and we are very willing to help.

Regards,
Ruth Cuadra

[trudeaubear]

Hi Ruth

Thank you so much for all the information. We had begun to do some research and based on that had come up with some of the questions, but the additional information certainly helps us heaps.

We have just heard that they will begin the treatment soon as an inpatient. With the time difference it's hard to telephone the doctor but she will be emailing me and I will follow up with a phone call. She's quite nice and willing to talk to us, so that's a good sign.

It's wonderful to hear that people continue to live 'normal' lives after diagnosis and that there are people so willing to give information on something most of us have never heard of before.

I will keep the forum posted!

Best,

Lianne

[trudeaubear]

Hi Ruth

The doctor just emailed me and it's been offiically diagnosed as Aplastic. I sent back a ton of questions to her, so hopefully she will get back to me, if not, I'll follow up with a phone call.

Mom is in good spirits, which is great. She has been through so much this year with her health, we thought we were passed it.

The doctor said they are working to get the medication, in the meantime, they did a blood transfusion and are happy with the results, so she will go home for the weekend until they are ready.

As you thought they will be treating her with anti-thymocyte globulin and cyclosporine over a four day period.

One of the things I asked, and maybe you can answer. After that and she goes home, when does she go back for a check up and more blood work? And how long between treatments?

I told my Mom about this forum and she's looking forward to checking it out herself.

Best Regards,

Lianne

[Laurie]

Lianne,

All I can say is be proactive, aggressive. Don't let the doctors think you don't know anything about AA. You are off to a great start, asking questions, coming to the forum and posting. Not all physicians know how to treat AA. For us, we found out to late for my dad, that not all doctors treat AA aggressively forever. The doctors treating my Dad gave up on him (without permission) less than a month after he was diagnosed.

Lianne, ask for copies of labs, demand that your mom be treated with the medications you learn about her on the forum and through the AA&MDS Organization. We tried, with my Dad but the doctors were not very receptive. I live in Florida, I was the one doing all the research, my Dad lived in Alabama 8 hours a way, and because I wasn't at the hospital everyday during his admittances, I wasn't able to make sure "things" happened. That is one of my biggest regrets!

I know my Dad is in a better place now. He is healed and happy but I want to make sure that know other loved one of a paitent of AA goes through what I went through....what I am still going through!

It's great that your mom's doctor is open to communicating with you. That's a wonderful start. My Dad's doctors barely talked to my mom and never ever called her unless he was critical. Keep the communication going, email, phone, ask quesitons, be a pest. I found in dealing with my daughter's liver disease the persistence (being a pest) certainly pays off in the long run. Do not be afraid to question the doctors treatment of your Mom. Don't be afraid to get angry, make things happen! They will listen...

I will keep you and especially your mom in my prayers.

God Bless,

Laurie
http://www.caringbridge.org/visit/roycollett
http://www.caringbridge.org/visit/ashleysstory

[Ruth Cuadra]

One of the things I asked, and maybe you can answer. After that and she goes home, when does she go back for a check up and more blood work? And how long between treatments?

Hi, Lianne.

I'm glad your Mom gets to go home--at least for the weekend. The comfort of home will help her rest more thoroughly and feel somewhat refreshed before she goes for the the ATG/cyclosporine treatment.

This treatment really has two parts. ATG is given over the 4-day period only. The cyclosporine will initially be given by IV and then orally when your Mom is ready to leave the hospital. Her blood counts will be checked often--maybe even a couple of times a week at first. The amount of cyclosporine in her system has to be regulated to achieve a therapeutic level (that is, the right level for helping without too much toxicity) and the doctor will want to watch for side effects such as high blood pressure and liver or kidney problems. There is a good summary of the side effects of cyclosporine on MedlinePlus. Gradually, as her blood counts begin to recover, the cyclosporine and prednisone will be slowly tapered down.

You should be aware that it can take 4-6 months to see much improvement from this treatment. Often after 6-8 weeks patients, and even some doctors, might think the treatment has failed. Although ATG treatment can be repeated, you don't want to do that prematurely. Patience is the key. If your Mom can get to the point in her recovery where she doesn't need transfusions, even if her counts remain on the low side, she's probably best off to wait a good long time to see how full her recovery can be.

Your Mom is very lucky to have you helping figure all of this out. It's a lot for anyone to digest. Hope this helps.

Regards,
Ruth

[trudeaubear]

Thanks everyone for your input. Mom was released from the hospital today while they wait for the meds to arrive. In the meantime, her doctor emailed me to say that she is still waiting for the final molecular tests on her bone marrow sample. There is a possibility that if those are abnormal then she would have hypoplastic myelodysplastic syndrome which is similar to aplastic anemia. However, in that case, a bone marrow transplant may be an option. If she is not a candidate for transplant, then ATG can be used. So until those results are back, the ATG infusion will not be started.

My Mom is quite distressed, I'm sure she just wants to know one way or another and it's been a bit of rollercoaster ride to learn all this in the two weeks.

So now it's wait and see. I don't know about the mini transplant, my Mom has had some really serious medical issues this past year and is not in the best shape.

I guess we just wait and see.

Thanks again!

Lianne

[Barbara2007]

Hi-I have severe AA and am a "Sr.citizen". For the past 3 years I have kept a detailed journal on my counts, transfusons and treatments. It's hard to remember all the details and I carry this journal to every appointment. Tell your Mom to be patient- I went from wheelchairs to walker to cane to now walking daily w/my family and dog. This forum is wonderful and I am still learning to navigate the site but boy I am learning so much and being encouraged. My thoughts are with you and your Mom and family. Barbara

[Robi1Knobi]

Hi Liane, I am 38 and was just diagnosed Feb 5th 2007. You were asking if you should move home. I am an only child, and wish my mother would move closer to me (she's only 4 hours away in Houston), here in Austin. There are days where I just cry when noone can see me. My husband is hanging in there, but has been drinking alot lately, so that's how he is coping. I'm still trying to work full time, but have had shortness of breath, so have called in. I'm be praying your mother will make it, but if I were you, I'd move home if you can.

[Connie]

Sorry about your diagnosis. I know what a shock AA is and how hard it is to deal with. I was very fortunate to have such great support from family and friends, but they are all in the same area as I am. Only, my Dr. office is about 45 min. drive from us. Long drives for that. Are you considering any king of treatment at this point?
Connie

[Robi1Knobi]

Thanks for your kind words. I'm leaving for Maryland this Sunday to go to NIH Tuesday, just for an evaluation (and ANOTHER biopsy, ugh). I hope I qualify for a study there. I could go somewhere here in Texas, but my insurance company won't cover a donor search or match. I just found out that I could appeal, but we'll see what NIH says first. I'm sick of having shortness of breath, but I don't think I'm as sick as alot of people on this forum since that's my only complaint. How are you doing?

[Connie]

I do really well now, thank you. I still take Aranesp, but am soon to try once again to get off of it. I do still need to take naps and get tired. Also, my memory seems to be pretty shot. But I am doing so much better than I used to do.
Funny, I used to think I wasn't that sick either, and soon found out that I was. I think us women try to handle almost anything and convince ourselves we are ok. So be sure to listen to your Dr.s, but do what you feel you can.
Please let us know what you find out at NIH. Sounds like maybe you are going to consider a clinical trial?
Connie

[Robi1Knobi]

Hi Connie,

Sorry I didn't get back with you..I went to the NIH, and according to their criteria, I have mild and don't need treatment right now. The only way I can help myself is to decrease stress and to try to be healthier. So, organic foods, working less, working out 20 minutes everyday, avoiding negativity, ect...I hope you are doing okay with your treatments, hang in there!! Linda

[Connie]

Linda, don't worry about not getting to me soon. As you can tell, I don't get on here too often either. I am glad that you don't need treatment yet. And that you are able to maintain with good care. This is time to take care of yourself. I try to do some of those things also, but stress if often hard to avoid. But I try. I am no longer on any treatment. Dr. took me off Aranesp, and I think I am doing fine. I will find out for sure tomorrow. But I really feel that if things were not working out well, I would have had cause to call my Hem. by now. So far, so good!
I hope the things you are doing for your care are working out well for you!
Connie