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Suffered from Leukemia for 2yrs

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It was about 2000. I saw an oncologist because my white blood cell (WBC) count was below normal. I had many test done. The first was the Bone Marrow biopsy. That didn't show anything.
I went to an infection specialist. Result: Nothing found.
Cat scan was done which showed the spleen to be enlarged.

By 2002, I was frustrated, emotionally drained, lost a lot of weight, and started becoming anemic. We were going for a 2nd bone marrow biopsy. I told myself that I would find another doctor if they didn't find anything. However they found something, Hairy Cell Leukemia (HCL).

I did get a second option from UCLAs ongologist. He confirmed that it was HCL. He did also say that he could have diagnosed me within 1 wk instead of 2yrs.

During those 2yrs I suffered. I had high fevers everyday (105deg). I had massive headaches. Nothing help ease the headaches. I was taking 16-18 tylenol for my fevers.
As I've looked online of others who experienced HCL, they were all diagnosed within 1-2wks.

So do I have a case? Can I take the original doctor to court? I feel that he should have diagnosed me earlier. This was confirmed by the UCLA oncologist.

thanks,
Joseph
 


rmet4nzkx

Senior Member
Joseph_free said:
It was about 2000. I saw an oncologist because my white blood cell (WBC) count was below normal. I had many test done. The first was the Bone Marrow biopsy. That didn't show anything.
I went to an infection specialist. Result: Nothing found.
Cat scan was done which showed the spleen to be enlarged.

By 2002, I was frustrated, emotionally drained, lost a lot of weight, and started becoming anemic. We were going for a 2nd bone marrow biopsy. I told myself that I would find another doctor if they didn't find anything. However they found something, Hairy Cell Leukemia (HCL).

I did get a second option from UCLAs ongologist. He confirmed that it was HCL. He did also say that he could have diagnosed me within 1 wk instead of 2yrs.

During those 2yrs I suffered. I had high fevers everyday (105deg). I had massive headaches. Nothing help ease the headaches. I was taking 16-18 tylenol for my fevers.
As I've looked online of others who experienced HCL, they were all diagnosed within 1-2wks.

So do I have a case? Can I take the original doctor to court? I feel that he should have diagnosed me earlier. This was confirmed by the UCLA oncologist.

thanks,
Joseph

By all means you may consult a med-mal attorney, however the statute of limitations has run out and by your own admissions based on the date of discovery the SOL would have also run out. If you had a case. HCL is rare, approx 2% of all leukemia is of this sort, it is slow growing. THere are other causes of low while blood cells and your onnocoligist refered you after the negative biopsy. The original Onocologist did appropriate testing and referals. It is possible that becasue it is so slow growing that you sought diagnosis early and that by the time you has spleenic involvement and other symptoms it became a diagnosis of exclusion, in part due to it's rareity. Once diagnosed it is treatable, often with success. I have posted some information about HCL, which hints at the normal progression and newer diagnostic techniques. Of course when you have full blown clinical signs it can be diagnosed quickly. If you had raised this question here when you posted in 2004, then there might have been some reason to investigate more, but at this point it doesn't seem to be any mal-practice, just delayed diagnosis of a rare form of leukemia.

https://forum.freeadvice.com/showthread.php?t=191234
08-17-2004 09:50 AM
Joseph_free What is the name of your state?CA

Hello,
About 2 years ago I was diagnosed with Leukemia. While preparing for chemo therapy, one of the doctor was putting a catheter through my right arm, above my elbow area, and it would go across my chest and end near my heart.
Anyway, while trying to put the catheter in my arm, he hit a nerve (I think?). I was under local anesthesia but felt a sharp and painfull (I yelled) electrical current like surging from the place where he inserted the catheter all the way down to my finger tips. So he looked for another spot to insert the catheter. After he finished, I complained that I feel like my finger tips have pins and needles. He said it should go away after 2-3 days.

It was there for 3 weeks!!! After that I couldn't put pressure on it because it felt like my fingers got jam between a door. Also I could stretch my arm because my fingers would hurt.
After I can put pressure and stretch my arm, my elbow area started to hurt. Up to this day, my elbow area hurts (going on 2years now). I've had my family doctor look at it and he gave me some pain relief medicine because he thought it is just tendonitis.

I really believe this is due to the incident with the catheter.

Can I do something about this if infact it was due to that?

thanks,
Joseph
http://www.hairycellleukemia.org/
WHAT IS HAIRY CELL LEUKEMIA?

Hairy Cell Leukemia is a chronic (slow progressing) lymphocytic leukemia (CLL) that was first reported at Ohio State University in 1958. It does not develop into acute (rapid progressing) leukemia. The name comes from the abnormally shaped lymphocytic white blood cells with hair-like projections. It can strike both males and females, usually between the ages of 40 to 70.

Diagnosis is done by completing a bone marrow biopsy. HCL develops in the bone marrow as does the blood. A sample is removed from the hipbone to confirm the diagnosis.

HCL will sometimes lead to an enlargement of the spleen. In this rather stagnant area of blood flow, HCL tumors will gather which will trap and destroy normal blood cells.

Symptoms of HCL generally center around the disruption of normal blood cell production. Low red cell production will lead to anemia. Low white cell production will lead to increased infections. Low platelets will lead to lack of blood clotting, indicated early by increased black and blue marks. A swollen spleen from the tumors may be indicated by a feeling of discomfort or fullness in the upper left side of the abdomen. Finally, unexplained weight loss and a loss of a sense of well-being may bring patients to their physician.

Cytojournal. 2006 Jan 23;3(1):1 [Epub ahead of print] Related Articles, Links

Diagnosis of Hairy Cell Leukemia by Endoscopic Ultrasound Guided Fine Needle Aspiration: A case report and review of recent literature.

Meara R, Reddy V, Arnoletti JP, Jhala D, Varadarajulu S, Jhala N.

ABSTRACT: BACKGROUND: Endosonography (EUS) guided FNA is a relatively new imaging modality which is increasingly used for sampling deep seated lymph nodes for staging and diagnosis of primary as well as metastatic malignancies. It is also useful for diagnosis of recurrent as well as staging of Non Hodgkin's lymphoma. Diagnosis of leukemia on FNA samples from deep-seated lymph adenopathy poses even a greater challenge. Hairy cell leukemia (HCL) is an uncommon, but a distinct, lympho-proliferative disorder of B cell origin. It usually affects the spleen and bone marrow and uncommonly affects lymph node. There are only a few cases reported where HCL was diagnosed on FNA samples. Methods and Results: We show in this first case report that a diagnosis of HCL can be accurately rendered on EUS-FNA samples. A patiet with status post splenectomy for 19 years and in complete remission of HCL for at least 4 years presents with abdominal lymphadenopathy detected by CT scan. An EUS-FNA was performed to avoid a more invasive procedure to rule out lymphoma. Cytology samples revealed intermediate to large atypical lymphoid cells with gray cytoplasm. Cells also demonstrated cytoplasmic blebs and projections suggestive of HCL. Samples collected for Flow cytometry based on on site interpretation helped to confirm the immunophenotypic characteristics of these hairy cells. Conclusion: This report shows that effective utilization of EUS-FNA can help diagnose uncommon lympho proliferative disease like HCL while avoiding a more invasive procedure.

PMID: 16430774 [PubMed - as supplied by publisher]
 
rmet4nzkx said:
By all means you may consult a med-mal attorney, however the statute of limitations has run out and by your own admissions based on the date of discovery the SOL would have also run out. If you had a case. HCL is rare, approx 2% of all leukemia is of this sort, it is slow growing. THere are other causes of low while blood cells and your onnocoligist refered you after the negative biopsy. The original Onocologist did appropriate testing and referals.

Yes he did do the proper testing. However they would have to know what to look for. If they don't know what to look for, then they won't find the cancer.
Like I said, the UCLA oncologist said he could have found it with in 1-2wks.

How long are the SOL?

Okay, let me put this in the picture. Recently my labs have been lower than normal. Last week, I got another B. Marrow biopsy. This week the original doctor told me that they found small traces of the HCL. So my well being to day is comparable to the first day I went to see the oncologist 3-4 yrs ago. Why is it that they are able to find it quickly now. Where as before it took them 2yrs. Before the biopsy, I had a cat scan which showed a normal spleen.
I strongly believe that it is because they know what to look for.

I know it is rare. But others who had this disease were diagnosed right away. They didn't even have as bad of symptoms as me.

I guess the bottomline I would have had a case but the SOL has ran out?

Oh BTW regarding the previous post, I eventually saw a physical therapist and now my arm is healed. The therapist believes that it had something to do with the needle. Just an FYI.

Thanks for your informative response.

Joseph
 

rmet4nzkx

Senior Member
Joseph_free said:
Yes he did do the proper testing. However they would have to know what to look for. If they don't know what to look for, then they won't find the cancer.
Like I said, the UCLA oncologist said he could have found it with in 1-2wks.

How long are the SOL?

Okay, let me put this in the picture. Recently my labs have been lower than normal. Last week, I got another B. Marrow biopsy. This week the original doctor told me that they found small traces of the HCL. So my well being to day is comparable to the first day I went to see the oncologist 3-4 yrs ago. Why is it that they are able to find it quickly now. Where as before it took them 2yrs. Before the biopsy, I had a cat scan which showed a normal spleen.
I strongly believe that it is because they know what to look for.

I know it is rare. But others who had this disease were diagnosed right away. They didn't even have as bad of symptoms as me.

I guess the bottomline I would have had a case but the SOL has ran out?

Oh BTW regarding the previous post, I eventually saw a physical therapist and now my arm is healed. The therapist believes that it had something to do with the needle. Just an FYI.

Thanks for your informative response.

Joseph
You are welcome. Check with an attorney they may still be able to do somehting. With reocurance of HCL they know what to look for. ALso remember it is not the onocologist who reads the test results but pathologist, and if the cells were not there, the cells were not there. Good luck with your treatment.
 
rmet4nzkx said:
You are welcome. Check with an attorney they may still be able to do somehting. With reocurance of HCL they know what to look for. ALso remember it is not the onocologist who reads the test results but pathologist, and if the cells were not there, the cells were not there. Good luck with your treatment.

Yes, it is the pathologist.
 
Joseph_free

My advice to you is to speak to a medical malpractice attorney,first gather all your medical records from every doctor or hospital you visited.While the events are still fresh in your memory write down everything you can remember, as to what was said and done including dates.This is important, this way an attorney can veiw your potential claim without delay to see if medical malpractice did take place.Considering that you had lukimia before and were not checked for recurrent cancer I would seek legal advice.
I know what your going through,it happened to me. I had NHL was in remission, three years later it came back. I almost died because for four months I was told I had pneumonia even though doctors were told I had NHL before. This NHL was an agressive type that could have killed me,I lost my hearing from it all due to agressive chemo to save my life.God be with you.
Mary
 

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