Getting Diagnosis?

[Helene]

I have been to several oncologists/hematologists in the Chicagoland area. The first oncologist I went to did blood work and told me he thought I had MDS and to come back in a year.

I didn't like that answer so I went to a teaching hospital in Chicago. I had a bone marrow biopsy and blood work completed. All the hematologist would tell me is I have bone marrow damage and thrombocytopenia. My wbc, rbc and platelets are all low. Everytime I went in for blood work to check my counts, I would ask the doctor if the counts had changed. She told me it was bone marrow damage and not MDS and basically to go somewhere else to get another opinion.

Presently I am at a second teaching hospital in the area. I go in for a bone marrow biopsy on May 21. My blood counts wbc, rbc, and platelets are all low with large rbc. I am also very tired. The hematologist I have now thinks it may be MDS, AA, or possibly some other blood disorder.

I am finding most of the teaching hospitals in the Chicagoland area don't have much experience in this area.

Is there a list of recommended doctors and hospitals so a person can get a correct diagnosis and treatment?

Also is there a support group in the Chicagoland area?

I have read there is a treatment of high-dose cyclophosphamide. Has anybody had experience with this treatment?

Thanks for any information you can provide.

Helene

[Marlene]

Helene,

It is so critical that you get an accurate diagnosis. I'm am sorry to hear you've had such difficulty in getting one. I am not familiar with the Chicago area so hopefully someone will be able to respond with some reccommendations in your area.

I would go back and request copies of your test results of the last Bone Marrow Biopsy and start keeping track of your CBCs. They must provide you with the results if you request them. Since you've seen multiple docs, it would be good for them to be able to compare the old BMB with the new one.

I would also find out if they checked your B12, folate, iron and serum copper levels. If they have not, get them to check these and get copies of the results. If any are low normal, I would consider supplementation to bring them up to better level. Deficiencies in these nutrients can result in low blood counts. There are doctors who do not check these simple things so you need to ask. Diagnosing these diseases is usually a process of elimination. Example....my husband was diagnosed with SAA and they too said upon his first CBC....it could leukemia, MDS, SAA, or PNH. So they ruled out the vitamin deficiencies immediately through tests, then leukemia based on the initial examination of this bone marrow and then finally, they ruled out MDS and PNH (and anything else it could be). That left him with Aplastic Anemia based on his BM cellularity and blood counts.

If the doctor you are seeing has little or no experience in these diseases, make them consult with NIH, Hopkins, MD Anderson or any hospital that has lots of experience with BMTs and these diseases. And I suggest that once you have a diagnosis from this doc, do get a second opinion from someone who's considered and expert in the disease.

You can't really research treatments until they pinpoint the cause of your low counts.

Hope this helps....Marlene

[Tom M]

Hi Helene,

It is important that you act on your own behalf and learn as much as possible about bone marrow failure. This enables you to ask the right questions and points you in the general direction you must go. Marlene had some great suggestions as a place to start.

My worry is exactly how low are your counts....your hgb(hemoglobin) and hct(hematacrit). It is possible if you are feeling very tired and maybe suffering from shortness of breath with slight exertion, you may need a blood transfusion. Your general practioner can order the necessary blood work and get you transfused, if your bloodwork results warrant it.

As for resources in Chicagoland, I am not familiar with any of them. I did do a google search and came up with Rush University Medical Center. It appears they do bone marrow transplants, so they should have a clue as to your present situation.

Other sites to check: www.aamds.org or www.cancer.gov. This is a start and I hope it helps.

[Helene]

Marlene and Tom,

Thank you very much for your reply. I am still learning about bone marrow failure. I am trying to get an appointment a NIH. Even though I am going to teaching hospitals that do bone marrow transplants, they seem not to know what my diagnosis is. I will keep trying to get an appointment at NIH.

I am going to have a long talk with the hematologist I am seeing now, as I get my blood work results about a week or two after I meet with him. I will start taking charge of my health and will continue to tell him what I need (I would like my CBC results the day I meet with the doctor). I will also starting requesting copies of the results. It will be a learning process.

Thanks so much for your replies. It is good to hear from other people who are dealing with bone marrow problems.

Helene

[Steve Kessler]

Here are the names of the Centers of Excellence in the Chicago area and key physicians. They can tell you what you have!! You may need to go one step beyond a Bone Marrow Biopsy. It's called a FISH (Fluorescence In Situ Hybridization) study. Bone marrow failure doesn't say much of anything. ITP by itself is not as frightening as it used to be 65 years ago when I developed mine. My spleen was removed, a standard treatment for the day, and still used for stubborn cases. Usually, a course of antibiotics is used today. Hope this is helpful. Good luck and be a strong advocate for yourself!

Loyola University Chicago
Cardinal Bernardin Cancer Center
Maywood, Illinois
Scott E. Smith, MD, PhD

Robert H. Lurie Comprehensive
Cancer Center of Northwestern
University Feinberg School of Medicine
Chicago, Illinois
Olga Frankfurt, MD

Rush University Medical Center
Chicago, Illinois
Stephanie A. Gregory, MD
Jamile Shammo, MD

University of Chicago Medical Center
Chicago, Illinois
Richard A. Larson, MD