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Waiting to go back to work

I'm 49 years old and was diagnosed with HCL at the end of April. I was healthy, a runner, and have an aversion to doctors so I haven't seen one in over 5 years. I had a gastrointestinal virus with fever that sent me to my doctor and they drew bloodwork which showed a WBC of 1.2 and Hgb of 7.2 and platlets of 70. A CT showed an enlarged spleen of 18cm. So in hindsight, I was feeling momentarily dizzy at times and couldn't even run a mile without stopping. I also had nightsweats and leg cramps, a full feeling under my rib cage and had heavy periods. I rationalized everything as premenopause. So I had a bone marrow biopsy that confirmed HCL and had 5 days of outpatient Cladribine intravenously. 5 days after Cladribine treatment, I developed fevers and was admitted to the hospital. I was there for 2 weeks with rigors, fevers, chest pain, arrhythmias, shortness off breath and an all over rash. They cultured everything they could and came up with nothing. I really did think I was a going to kick off. They fluid overloaded me with 35 lbs of fluid trying to keep my blood pressure up and I came very close to being on a ventilator. After a bronchoscopy showed upper airway swelling, they decided I was having a major drug reaction. They put me on steroids and eliminated some of the antibiotics/antifungals. So anyways, I made it out of the hospital and now am fine, just waiting for my neutrophils to come up so I can get back to work. Last labs 6 weeks after chemo, WBC 1.5 with an absolute neutrophil of 1.0. My hemoglobin is 11 and platelets 140!
I'm a nurse that works in a hospital with acutely ill patients and was told I have to wait until my Absolute neutrophils go above 1000 before I can go back to work. I'm back down to my regular weight and am on Dapsone, Valcyclovir, Fluconazole, Iron and Vit C. I feel good and want to get back to work and a regular life, so waiting is the hardest part. I've been a nurse for over 27 years, and I didn't realize how scary and confusing it can be being a patient. I'll be a better nurse/person for this experience. It helps to have the support of family and friends too!

‹ How long were you home? Started chemo yesterday ›

Severe reaction to ??

Submitted by heather on Tue, 2011-09-20 14:23.

I am 44, dx'd in July after months of low WBC and platelet counts. I have rec'd 5 days of 2-CDA 2 hrs/day, and now day 10 post treatment. I was also put on Abelox, Valtrex, Diflucan and allopurinol in case of possible infections, or tumor lysis. Day 2 post-treatment, I had a severe reaction, hives, throat and tongue swelling. I spent night in ER. I have since stopped all meds, and continue to have red itchy rash, tight chest, and peripheral neuropathy in my right fingers. My oncologist is not sure what exactly is causing my reaction, I am taking prednisone, zantac and benadryl around the clock which is beginning to help. My counts, however, have not dropped, but instead have risen to almost normal levels, and I was very thrombocytopenic >50, and my ANC prior to treatment was .9. My doctor is again unable to explain this. There are so few HCL patients and studies, that I wonder if the MD's are still learning about the side effects of this disease and treatment. I'm seeking simliar reactions/answers to whatever is going on with me, since my doctors are just as perplexed.

itchy

Submitted by floridamom on Wed, 2011-11-30 23:57.

I'm itchy post-treatment too. I've got pretty constant hives, but none of the other things you mentioned. But I also took neuprgen shots for three days post treatment, and it wasn't until my third shot (so 5 days post treatment) that I developed the hives. So we're not sure what's causing my hives...and nothing is helping. However, we've kept it to soaks and benadryl at this point. My hematologist is trying not to start me on prednisone unless we have to.

I agree that the doctors are still getting answers since it's such a rare disease. None of the nurses on my oncology floor had treated with Cladribine before, which made me a little nervous. But they couldn't believe I wasn't feeling bad or losing my hair, since that's what they more commonly see. My doctor has treated HCL patients before...but it was in his early days at a research center in MD. So he had a team and wasn't treating them individually. I guess we don't get the choice but to be guinea pigs though.

2 months out

Submitted by mah on Mon, 2011-08-08 18:43.

I am female, 45 years old and was diagnosed with HCL after having a CBC for a routine OB/GYN appt in April. My neut. was .4, my plt 38 and my wbc 2. No wonder I was so TIRED ALL THE TIME. I opted for the seven day continuous cladribine treatment. No problems while receiving drip. No nausea, vomiting, discomfort at all. Went home on diflucan, acyclovir and bactrim. Had an allergic reaction to bactrim : a red blotchiness which started on my stomach. Two weeks after treatment I had the expected fever and went back to the hospital for the weekend. Had another reaction to the new antibiotic that was introduced (cefapime), I looked like I had a sunburn head to toe.

I've been monitoring my labs each visit to my oncologist and they steadily improved. I was loving that! June and July labs were great!
This past week I went in for a lab appt and my numbers dropped. Last month everything was in the normal range. I am concerned and noticed that I have felt tired. I hope it is a virus, or maybe just stress.