Information or Advice

[Becca11OU]

I am new here and thought I could get some feedback from those that are familiar with this disease.

My husband was diagnosed with Aplastic Anemia about 3 years ago, but it was considered mild and just monitored. Just about a year ago, things went from mild to severe and action needed to be taken. The best bet with his age (31) and otherwise health was a Bone Marrow Transplant, but we have not been able to find a donor. Because of that, he underwent ATG last July. Since then he has had a number of health problems and nearly lost his life, suffering from Septic Shock and an infected colon, among other things. He has improved slightly since then but his overall health and immune system are both questionable.

At our most recent doctors visit we were told that my husband most likely has MDS. They are not sure whether he has always had this and the diagnosis was incorrect or if his Aplastic Anemia turned into MDS. They will need to give him another bone marrow biopsy (I believe this will be his 4th or 5th so far) in the next week or two to determine all of this (and also whether it could possibly have turned into Leukemia). I have been trying to read up on MDS but thought this might be a good place to turn to for advice or suggestions as to what to ask the doctor when we meet with them next. Also, does anyone know if his Aplastic Anemia was considered very severe, would that be the case if it was indeed MDS? I know that MDS seems more complicated and has different classifications, which I suppose we will learn, but I’d like to know what we are facing…

Thank you in advance for your responses. We have two very small children and are trying to take this all in stride, but I feel the more we know that better off we are.

[Neil]

Hi Becca,
It is hard to believe there was a misdiagnosis.
One of he differences between AA & MDS is AA patients usually have hypocellular marrow where most (not All) MDS patients have hypercellular marrow. Suspect he has hypocellular in view of the ATG treatment.
Would be inclined to wait for the results of the next BMB. An experienced pathologist should be able to intrepret the resuls in a day or two. The cytogenetics will take about 5 days. A comparison with prevoius BMBs should reveal any changes in his cell counts and if there are any abnormal chromosomes.
It is possible that the AA turned into MDS. There are a number of cases of this.
It is extremely important he sees a doc experienced in treating MDS if that turns out to be the case. The Cleveland Clinic has several.
At his age a stem cell transplant is a possibility. Hopefully he would have a compatible donor. If not a cord blood transplant may be in the cards.
It will take a while for all of this to flush out, but patience is difficult but sometimes necessary.
Once the actual disease is DX the options will narrow considerably.

[marlene]

Hi Rebecca,

Have they given you any indication as to why they think your husband does not have AA? You will make yourself crazy reading up on disease that your husband may or may not have…I’ve been there, done that. I personally feel they do patients a disservice by giving them an unsupported diagnosis (their best guess at the time). Many people with SAA who have done ATG/Cylco may not respond to the first treatment and need a second treatment. Also, it can take up to a year for ATG to work.

It may be time for a second opinion. There’s a Dr. Majewski (spelling?) at the Cleveland Clinic who’s very familiar with SAA. You may also want to look into going to the NIH. Dr. Neil Young is highly respected in the AA community.

Like Neil said, once you know the diagnosis, you can focus your attention on a few treatment option.s. It’s still overwhelming but more manageable than trying to understand all of them.

Marlene

[Becca11OU]

Thanks for the information. They do believe it’s possible that my husband’s AA turned into MDS. We are waiting for them to schedule a Bone Marrow Biopsy and see what they can conclude from there, but they seemed fairly confident that what we are now dealing with is MDS. As I have read and learned more, I realize that until we know more that I really can’t be certain of what to expect. I just thought that if I went into our appt with a greater knowledge or an idea of some questions to ask, I would be in a better position.

While the doctors said it usually takes 3-6 months to tell if the ATG worked, they said they are confident it did not. Dr Majewski (sp?) is one of the doctors we refer to in Mark’s case and see him occassionally when we are at the Clinic. Before anything is done, he has always been consulted. However, if my husband has MDS we may not work with him in the future. I guess I am trying to read into things based on my husband’s blood counts and the information that is available to me, but without knowing more I probably should leave that in the doctors hands. I always feel being educated helps us make sure the right decisions are being made.

I am not sure how they do the typing for a stem cell transplant, but he has not found a bone marrow match. They also have discussed a cord blood transplant but my husband is very tall and lean (6’6″) and although he has lost a considerable amount of weight, they still feel he may be too large in size for this procedure.

It seems that most things I read give people a few years to live. I hate to think that is the case, but is that a reality with this disease or are there many other options to treat this?

Thanks in advance for your help and advice…

[marlene]

Rebecca,

Try not to pay attention to the prognosis time frames. Many are outdated and really do not serve much of a pupose in my opinion. You will find many have and continue to live way past the stats.

The way I’m understanding your husband’s situation is that he had a small response to the ATG but not enough to raise his counts to safe levesl. Meaning that he’s still getting transfuions and his white count is still very low. And that the docs think he may be progressing to MDS but they don’t know yet.

Base on this, I would recommend you take a look at another forum which deals with aplastic anemia. You can look at the posts on the forum for people going through similar problems with AA. Also, Bruce, who sponsors this site, was diagnosed with AA back in 99 and is now dealing with MDS. Another member’s husband was originally diagnosed with AA and then Hypocellular MDS. So you can search on Lisa’s post. People go in and out of remission with AA and that does not mean their disease is progressing. Many have had to go through multiple ATG treatments before they saw a response. So spend some time here in case his disease has not progressed.

Hopefully this will give you enough knowledge to talk with the doctors because I don’t think you can really leave this in the doctor’s hands. You are doing the right thing by educating yourself. You are your husband’s best advocate.

http://www.aplasticcentral.com/

Take care,
Marlene

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