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rituxan rescue

Hello,

Like to share my story with you all. Since I'm Dutch my English is far from perfect, I hope you understand.

October 13, 2008 I'm diagnosed with HCL in a local hospital after feeling tired. My Hemoglobin (Hb) was something of 3.6 and the number of platelets 12 then. Blood products infusion was administered. I was 45 years old at that moment.

On October 27 I started with a 5-day treatment with 2-CDA (Litak) subcutane injections. Then after a week I developed serious liver problems because of antibiotics. Hereinafter quite ill with high fever above 42 degrees celcius. Cooled my body with pure alcohol to survive. I swelled up and got a purple color (despite many tests no infection found ) that I was retaining fluid. Frequent blood products needed.

I had high fever for four weeks and costs a lot of energy. I really suffered badly. I had fear of death and was feeling sorry for my wife and four beautiful kids. Bone marrow punction during the fever period showed that the chemo had zero result. Fortunately a top specialist has treated me immedeately with rituximab / rituxan.

After the first treatment my blood started up again and one week later my bloodleve was good enough to go home again after 6 weeks of hospital. I lost 14 kg ( 83 back to 69 ) I have had 6 weekly treatments (at least one week following treatment). Fortunately, it had no side effects for me. My blood and liver are now OK again ( january 2009), Hb 7.8 platelets 388 and white blood counts 9.8. So glad that there was an alternative to chemotherapy. Normally living and working again. Thanks to God, the MD and this greath medicine. Hope that HCL will stay in remission for a long time.

‹ My experience of HCL in England (and France) The VA and HCL ›

Cladribine and Rituximab

Submitted by marc on Wed, 2009-12-30 15:15.

Hi my name is Marc. I was recently diagnosed with Hairy Cell Leukemia while undergoing a standard medical exam in Costa Rica (no med insurance). Now, I'm navigating the treatment options. Have just decided to participate in a Phase II clinical trial at the National Institute of Health, Bethesda, MD. I will either be given a dosage of Rituximab simultaneously to my infusion of Cladribine, or six months after 2-Cda treatment. We'll see. But, I'm being admitted to NIH this Sunday evening. Will let everyone know how things are going. Thanks to everyone participating in this forum, and all the invaluable information shared freely. I wish everyone a Happy, Healthy New Year!

Treating at low CBC

Submitted by jeober on Thu, 2009-11-19 10:35.

Treating at very low CBC is difficult using 5-day CdA since the treatment can suppressed even further.

A doctor might also consider reduced dose dCF (Pentostatin) treatment or Interferon-alpha to first gain partial CBC recovery with a lower toxicity and suppression.

It's great the ritux worked for you.

Best wishes, jeober

HCL & Rituxan

Submitted by MareDezzi on Thu, 2009-10-08 11:46.

So Happy to hear that your doing well, keep up the good work and live life to its fullest.

Something like this happen to my husband 9 years ago after being treated with 2CDA very high fevers admitted in hospital & diagnosing him as having an infection but cultures being neg, by giving him every antibiotic possible now he was close to death all his organs shutting down with Congested Heart Failure by the faith of God he pulled through it and after in hospital for over 1 month but he has been ok up until now the cells are back & his WHC was dropping. He had another round of 2CDA here in Philadelphia back on 9/21 & now has a rash all over his body doctors saying its STaph but I found from researching on my own that its most likely from the Allopurinol that was given to him along w/2CDA & its written in the bjh that the routine concomitaant use of Allopurnol is not recommended in this setting. Also, Dr. Saven from Scripps who is Dr. HCL also wrote this up in 1998. Our physician now is mentioning about Rituxan but we are not sure if he has ever given Rituxan to anyone. We don't think he ever did so we are not sure what to do.

Take Care to everyone with HCL & God Bless

Mrs. P

Second opinion

Submitted by bp on Mon, 2010-12-27 21:51.

You and your husband might want to seek a second opinion from one of the doctors on the Consortium's Scientific Advisory Board. A two hour drive or train ride to New York would allow you to see Dr. Tallman at Memorial Sloan. He is one of the great Leukemia doctors with alot of experience with Hairy Cell.

Through the wringer

Submitted by whatamIdoing on Thu, 2009-09-10 13:11.

Thanks for sharing your story. It sounds like you were diagnosed in a very advanced condition and had an unusually difficult time with treatment. I'm glad to read that you're doing better now.