My Story so Far with Hairy Cell Leukemia

fr1artuck

My story so far …

My name is Stephen and I am a 42 year old male. I live in Brisbane, Australia.

I woke up on the 5th December, 2007 with what I thought was Appendicitis. My wife called the ambulance and I was whisked away to the hospital at 1am. After numerous blood tests, CT scan which showed an enlarged spleen, I was passed along to the blood doctors and admitted to hospital. I was then scheduled for a bone marrow aspiration (BMA) on the morning of the 6th December as well as a CT scan. The morning of the 7th December, my registrar came bounding into my room and told me that I have Hairy Cell Leukemia (HCL). In fact he said if he had to get a form of Leukemia, this would be the one to get. My HCL count as a percentage from the BMA was 58% and classed as advanced. My blood levels were very low and classed as Neutropenic.

The following Monday to Friday (10th – 14th December), I underwent Chemo treatment with Cladribine. I spent the next 2 weeks recovering in a hotel because it was safer for me to remove myself from the general population as a risk mitigation exercise due to picking up anything bad out there.

I then came home. On the evening of 24th December, I spiked a high fever (over 40C) and went to the emergency department of the hospital. I had a Neutropenic fever and was admitted. This fever lasted 7 days. I was released from hospital on the 16th January, 2008.

Since then my blood levels have been low and my immune system does not want to recover. I am supplementing at the moment with G-CSF – the “G” my oncologist calls it, every 2-3 days.

I had my second BMA last week (18th December) as well as another CT scan. I went back to hospital on the 20th December to see my oncology specialist to get the results. Partial Remission was what she said. The percentage of HCL in my system was now reduced to 2% (was 58%). Although this might sound good, it has its drawbacks (another discussion at a later date).

I am due to see my oncologist this week on the 27th February to go through alternate options for my case. I will keep you updated as to the prognosis and plan.

Cheers,
Stephen
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Stephen
Hairy Cell Leukemia, diagnosed 7 December 2007

pablitosan · Posted: Mon Feb 25, 2008 8:43 am Post subject: Partial remission

Hi Stephen - thanks for your story. I'm thinking about you -- I have just had my second BMA, and it shows a poor partial remission (5-10 percent hairy cells). I'll see my doctor on March 3, probably will do a round of rituxan at that point. Not looking forward to it.

Your PR sounds very good actually -- might be better to wait and see how it goes. New monoclonal antibodies are in clinical trials; they might do better than rituxan. Anyway, let me know what you end up doing. I'm preparing myself for the possible side effects of rituxan, which don't sound good.

I've been keeping a blog about the whole thing at http://hcljournal.blogspot.com/

Hang in there. Twisted Evil

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Paul
Hairy cell leukemia, diagnosed end October 2007
Blog: http://hcljournal.blogspot.com/

fr1artuck · Posted: Mon Feb 25, 2008 5:01 pm Post subject: Hairy Cell Leukemia

Paul,

Sorry to hear about your PR - we are probably in the same ball park at least. My oncologist has talked about rituxan to me and was taking this week to talk to other specialist oncologists about the best way forward for my treatment. I will se her tomorrow and will then have a plan.

I to have major concerns over the side effects of rituxan. I will ask many questions and post another follow up.

Hang in there. I just hate the waiting.

Cheers,
Stephen
_________________
Stephen
Hairy Cell Leukemia, diagnosed 7 December 2007

fr1artuck · Posted: Mon Mar 03, 2008 8:17 pm Post subject: Hairy Cell Leukemia - Follow Up

Hi,

I went back to see my oncologist last week to go through the report of my BMA and treatment plans.

I still have 2% HCL in me. My levels are low but above what they consider to be dangerous. She said that if I walked in off the street and presented with my levels right now and having HCL, she would not do anything just yet.

So on the 19th March, I go back into hospital for another set of bloods and we will see from there. On the 19th, it will be close to 6 weeks between my last G-CSF injection.

I have started swimming training again and I definitely feel it the next day or so at the moment.

Will keep updating.

Cheers,
Stephen
_________________
Stephen
Hairy Cell Leukemia, diagnosed 7 December 2007

pablitosan

Hi Stephen -

My oncologist just revised my HCL count - reasons are complicated but boring (see my blog at http://hcljournal.blogspot.com/). Now I'm at less than 2 percent HCL, by flow cytometry. I see that's where you are too.

2 percent is actually great. I don't think any good oncologist would treat you now with that level, and you could live with it for many years before it gets worse. The risks of further treatment right now are larger than your risk from HCL. If you're still having low blood counts in a few weeks, it's probably due to your reaction to the chemo itself rather than to the HCL. A lot of people find it takes 3-6 months to fully recover from the 2-CdA (that's certainly true for me).

So hang in there -- you have had an excellent partial remission, almost to the level of a complete remission (less than 1 percent hairy cells). You will never get rid of all the hairy cells -- the goal is to keep them in check, at a low level, not to wipe them all out at any cost. You've been through a lot, so now it's time to relax, rest, and wait a bit longer.

It takes 120 days for the body to go through a complete cycle of replacing all of the blood cells. You still have at least a month to go before you hit that point.

By the way, I highly recommend the HCL Discussion Board, http://www.network54.com/Forum/263810/, where there are a lot more HCL patients posting actively than here.

- Paul
_________________
Paul
Hairy cell leukemia, diagnosed end October 2007
Blog: http://hcljournal.blogspot.com/

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