We just started treatment and have gone to a center of excellence (Scripps). We evaluated our hometown HemeOnc physician and he had only treated about a dozen patients. He was a little miffed about us going to the "expert", but it is your health afterall.

Other than some mild tiredness, PLTs ranged from 60's to 80's and neutrophils 1.1 (1,100); otherwise no symptoms. Dr. Saven made the statement of "why wait" until they get critically low (PLT less than 50 and other wacky CBC numbers). And, there is the emotional drain of thinking about it all the time and are avid athletes.

PICC line inserted and started the 7 day continuous infusion.

For me, the personal choice is lifestyle. When you are fairly young and do alot of sports, you think about potential problems all the time. Statistically, the chance of success is about 90% with a 38% remission rate at 4 years. That's pretty good odds.

Doctors that are truly experienced in treating HCL focus on both your symptoms and a group of blood counts to determine when treatment is appropirate. Given the toxic nature of chemo, it is best not to start treatment prematurely. Perhaps go to the "ask an expert" section of this website and see what one of the expert docs recommends. Also, HCL is so rare that few doctors have real experience with it. If possible, consider going to one of the centers of excellence mentioned elsewhere on this website -- those are the doctors who see this disease more frequently and have the real experience in treating it.
As for ports, the type used for this chemo need to be inserted fairly deeply and are more complex than typical IV needles. Mine was inserted the morning I started chemo -- no great pleasure, but all tolerable. And my one week course of chemo delivered complete remission, so be optimistic and all should go great.

My mom has hairy cell leukemia.

It's been 18 years since first time treatment by 2cd(Cladribine).

We waited for the right time to get treated for the second time, and Doctor is saying that it is time to take 2cd.

As you know that hairy cell leukimia is very rare disease, and many doctors do not know about this disease. Doctor that we have been seeing knows about the disease, but it is first time for him to treat the hairy cell leukimia patient. Although he does not know about this illness, he is overconfident and not willing to listen to our question and explain well. I am not sure that he is doing right thing...

However, since my mom started taking 2cd, she must complete this treatment.

My mom got 2hrs 2cd treatment for 2 days now. She was supporsed to take
5days treatment but doctor just started saying that it will be 3days treatment. He is gonna check the blood count to see if 3days treatment is enough.

I read many articles about hairy cell leukimia, and it all says that the treatment should be done in 5 or 7days, not 3 days.
Is there anybody who received 3days 2cd treatment??

The doctor told us it will be 3days treatment because she can get side effect or something.. again, he does does not like explaining what he is doing..

I appreciate if I could hear any experienced story or any advise for my story.

Thank you,

Best of luck to you, I'm sure you'll do great. From my experience and what I've read from others, 8 weeks should get you through the worst of it. I'm on the east side of FL, and no, I didn't go to any cancer centers. It all seemed pretty straightforward, thankfully, and I stuck with my original hematologist/oncologist and have no regrets. Even the few weeks of pre-treatment stress wreaked havoc on me - couldn't sleep, couldn't eat... Don't want to let that go on for too long. Hang in there, it'll all be fine in the end!

Hi - I was diagnosed with HCL this summer and started treatment within a few weeks. The deciding factor on starting right away was mainly that my neutrophils were very low, about 700, leaving me at a high risk for a serious infection. My hemoglobin was also low, platelets not so much. I was very tired and I fatigued easily.

I had a picc line inserted into my upper left arm, and I went directly from that procedure to have the Cladrabine drug and pump attached at my oncologist's office. I did the 7 day continuous Cladribine treatment. The original plan was to leave the picc line in for a total of a month to allow for the follow-up blood checks, and for "just in case." In the end, 3 days after the Cladribine was done, I did wind up in the hospital with a high fever. It was really nice to have the picc line available, although they did take a lot of blood from the other arm too because they had to figure out if the picc line was infected and causing the fever (it wasn't.) I did have a lot of problems with my veins "blowing out" in the hospital, and it was even difficult to get blood out of the picc line for a time. They did remove the picc line when I left the hospital however, in spite of the original plan to leave it in a month, because I developed a contact allergy to all the adhesives that ended up being stuck on me, including the very large picc line bandage. The allergy made the skin under the clear picc line bandage very red, and that made it continuously difficult to rule out infection there. So out the picc came, and thankfully that was the last of the "just in case" scenarios and I wouldn't have needed it again anyway. I was fine dealing with the standard arm blood draws for the followup blood tests, and my veins were fine at that point too.

By the way, I'm 48, female, and I was in very good physical and health condition prior to the diagnosis. Just one month after starting the Cladribine, in spite of the pretty rough week in the hospital (including infusion via the picc of 2 units of packed red cells), my counts all rebounded with gusto and everything was within normal ranges, and I was in remission. Pretty amazing. I'm now just short of 3 months from the start of my treatment, and I'm feeling fantastic. I did have a lot of fatigue the first couple of months (in spite of being in remission I still didn't feel all that great), but that seems to have passed and I truly feel better than I have for years.

Given all of that, my personal advice is to get the treatment so that you can get on the road to recovery and feel better. I think that the lower your counts get before the treatment, the lower the treatment will knock you and the harder the recovery could be. Not to mention the mental anxiety, which for me was quite significant.

Good luck, keep us posted, and let me know if I can answer any more questions.