Hairy Cell Leukemia

jadeddusk · New User Joined: 27 Aug 2007 Posts: 4

Hello guys Very Happy

A close family friend got diagnosed about a year ago now with Hairy Cell Leukemia. Now apparantly this is really rare, but was shocked to hear recently that it is incurrable (it just kind of ends up like a chronic condition). I was wondering if anyone else here has had any experience with this kind of Leukemia? The staff at his hospital hasn't really had much experience with it, so there is only limited info on what they can tell us. Any advice on prognosis etc would be helpful Smile

( a little background info on age etc, he is about 40 years old, was a smoker and was otherwise healthy before this started, tends to suffer terrible with jaundice and spleen problems as his side affects with this cancer)

Thanks everyone for any help Smile

pablitosan · Posted: Sun Dec 09, 2007 10:41 am Post subject: Hairy cell leukemia

Hi - I'm currently being treated for hairy cell leukemia and I can tell you, very happily, that you've been misinformed.

No cancer is completely curable, but hairy cell comes about as close as you can get. The first-line treatment is 85-95% effective. About half of all patients never need more treatments. The other half eventually relapse, but they can be treated again with the same treatment and it usually works. My doctor recently told me I should have a normal life expectancy (I'm 50). Plus there are new, possibly better drugs in the pipeline.

Sounds like he has not been treated yet. Two crucial things: be absolutely certain your friend has the right diagnosis. Hairy cell looks very similar to several other, more serious lymphomas. You want flow cytometry or PCR for the diagnosis, as well as cell morphology (microscope). If he is having spleen problems, he needs to be treated ASAP. The treatment (cladribine, aka 2-CdA) should clear that up as well as his liver problems.

Tell your friend to hang in there. The treatment is easy and only takes a week, but it'll wipe out his immune system and he needs to be super-careful not to get an infection for a few weeks. Also it knocks out your hemoglobin and makes you incredibly tired. He'll need a lot of help for about a month.

I'm blogging about my experience, and I posted some links to helpful websites there: http://hcljournal.blogspot.com/. I'll answer questions to the extent that I can.
_________________
Paul
Hairy cell leukemia, diagnosed end October 2007
Blog: http://hcljournal.blogspot.com/

brainman · Posted: Sun Dec 09, 2007 4:50 pm Post subject: Re: Hairy Cell Leukemia

Glad to have you with us, Paul. It is good to have someone who has first hand experience with Hairy Cell Leukemia. Your blog is great too! You and jadeddusk are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Nickin · Posted: Fri Dec 14, 2007 9:31 am Post subject: Re: Hairy Cell Leukemia

Hi all: My first posting... I was diagnosed with Hairy cell leukemia a couple months ago and my white cells are in the 2,500 range. I feel great, at 42 I'm healthy and energetic.

I'm a little confused as to when to go for any treatment. Will I just know by feeling tired?

Also the doctor did a Bone marrow test to determine the cancer. Is this enough to rely on for results or should I request an additional test?

Thanks.

brainman · Posted: Fri Dec 14, 2007 10:36 am Post subject: Re: Hairy Cell Leukemia

Hi Nickin, I am very sorry about your cancer. I know almost nothing about Hairy Cell Leukemia but still having energy sounds positive to me.

Your question about treatment is a good question to ask your own medical team. The bone marrow test IS the biopsy for any type of Leukemia so they should at least be considering treatment options and discussing these with you.

I imagine that you might be asking yourself: "Why start treatments when I still do not feel sick?" A better question for you to ask is: "Why NOT start treatments while I am still strong a can deal with it better?" From what pablitosan said, Hairy Cell leukemia is practically "curable." So, if the doctors have not said anything, I would ask.

You are in my thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pablitosan · Posted: Fri Dec 14, 2007 11:20 am Post subject: Re: Hairy Cell Leukemia

Bone marrow biopsy is the main test, but you should get flow cytometry and/or PCR for a definitive result. (These would be done on the bone marrow sample.) HCL is similar to several other lymphomas, so it's important to be certain your diagnosis is correct. See the posts on "differential diagnosis" on my blog about HCL: http://hcljournal.blogspot.com/.

Also, HCL grows very slowly. If your white cells are above 2500, your neutrophil count is above 1000, your hemoglobin is at least 11, and your spleen is not massively enlarged, you probably feel fine and you may NOT need to be treated. However, your risk of infections is elevated. I had pneumonia last winter before getting my diagnosis, and now I know why.

If the white cell counts drop further, infection risk becomes severe. If the hemoglobin drops below 11 or so (13-17 is normal), you'll start to notice that you don't recover as fast from athletics, you get out of breath easily, your pulse seems to rise too high too fast, and you're more tired than usual. With changes like these you would need to be treated.

The reason to wait, if you can, is that the treatment will wipe out the HCL (85-95% remission rates), but in about half of all patients it eventually comes back and needs to be treated again. You do not want to go through chemotherapy very many times in your life. Not only is it debilitating while you're doing it, but it has long-term side effects (such as reducing CD4 T-cell counts) that are undesirable. If you don't have symptoms, you should put off treatment as long as possible, since there is a very substantial chance (at your age) that you will need to be treated more than once.

An important thing to know is that some people NEVER need treatment for HCL — the disease just stops progressing, and causes no symptoms.

Another reason to wait, if you can, is that new drugs are in the pipeline. If you can avoid treatment for a couple of years, you might benefit from that. They may even be able to cure it completely by then. I wouldn't hold off on treatment if you develop symptoms, though.

Hematology/Oncology Clinics of North America (a journal) has a special issue on hairy cell leukemia (I think it's Oct. 2006) that will give you the total picture on all fronts, if you're able to handle technical medical literature.

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

Nickin · Posted: Fri Dec 14, 2007 3:24 pm Post subject: Re: Hairy Cell Leukemia

Thank you very much for the info. I just came back from the Doctor and my White blood cell counts dropped to 1,500 from the 2,500 a month ago. I'm hoping it is only short term and will come back up on it's own.

Thanks again. Nick

pablitosan · Posted: Mon Dec 17, 2007 9:33 am Post subject: Re: Hairy Cell Leukemia

Nick - 1500 is pretty low. I hope your counts come up too, but at that level I would start taking the threat of infection very seriously.

At that level your immune system does not behave normally, and it won't give you the warning signs you might otherwise recognize. Fever is the main symptom you'll have.

If you get a fever of even 100.5° you should call your doctor immediately. Until your next blood test you should do everything you can to avoid getting sick: wash your hands a lot, stay away from kids if you can, don't share towels with others, etc. etc. Avoid kissing. Stay away from crowds, shopping malls, cinemas, air travel. Little cuts, like shaving cuts and small cuts on your hands, can be easily infected, so use band-aids and Bacitracin whenever you get one. If your house/apartment has more than one bathroom, colonize one just for yourself and don't use the others. One of my blog posts, "Precautions," describes the things I did to avoid infection during and after chemo. (They worked!)

If you have to get treated, don't worry -- it's not so terrible. You'll be tired and headachy for a few weeks, probably not more than 4, during and after the treatment. If you can take time off work for that, get a lot of rest, and avoid infection, you should bounce back pretty fast. Today is 4 weeks exactly from the beginning of my chemo and I am starting to feel OK. I have another blood test today. I have a whole pile of relatives coming to visit 8 days from now and I am really hoping the white cells will be up so I don't have to wear a face mask around them.

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

Nickin · Posted: Tue Dec 18, 2007 1:03 pm Post subject: Re: Hairy Cell Leukemia

Thanks Paul, Your blog is great. I also heard of a clinical trial in Houston for 2-cda and Ritux. They are saying that 26 people have gone through the trial in 2 years with no relapses and 100% CM.

Hard not to give that more attention.

Nick.

pablitosan · Posted: Tue Dec 18, 2007 2:55 pm Post subject: Clinical trial: ritux + 2CdA

Hi Nick - I know about that trial. There are others going as well. Most of the clinical trials require that you have already been through one round of 2-CdA treatment, and then relapsed.

This isn't true of the trial you are thinking of, at MD Anderson. That's a great cancer center and the results of Phase I trials looked great, so it's certainly something to think about.

My doctor talked me out of pursuing it, though. His reasoning was that while the goal of 100 percent elimination of minimal residual disease (MRD) sounds good, there's no evidence - yet - that reaching that goal guarantees the disease will not return. (It only means they can't detect it with their best tests.) Nor does it even necessarily slow down the return. If you add rituxin on top of 2-CdA, side effects such as CD4 T-cell suppression are increased, without necessarily achieving any added benefit. On top of that, the extra 4-8 ritux treatments will cost you a lot in terms of how you feel, over a long period (several months), and there are more serious risks as well. Take a look at the side effects of rituxan at http://www.rxlist.com/cgi/generic/ritux_ad.htm.

If you do the regular treatment and it works, there's a significant chance you would come out of it with the same result - no MRD - WITHOUT going through ritux. Even if you don't, you've got an 85% chance of a clinical complete remission. After that you likely have 3, 5, 10 years or more -- maybe even forever, about a 40-60 chance -- without the disease. If it does come back, by then they'll have answers to the questions above. Finally, by then other, more targeted agents such as BL22 might be ready for prime time.

I thought about all this pretty hard, and I think they're both good and reasonable options. My friend the Patient from Hell (patientfromhell.org) gets ritux maintenance therapy every 3 months, so it can't be too terrible. If you go with the clinical trial, I'll be interested to hear about your experience.

The Hairy Cell Leukemia Research Foundation website has some patient stories about their ritux experience.
_________________
Paul
Hairy cell leukemia, diagnosed end October 2007
Blog: http://hcljournal.blogspot.com/

Nickin · Posted: Wed Dec 19, 2007 10:15 am Post subject: Re: Hairy Cell Leukemia

Paul, you are turning out to be a great resource. I hope you had someone like yourself to bounce ideas off of. I'm in the mode of taking in every scrap of information, digesting and filtering it.

Some additional numbers from my doctor are
White cells 1.5 (4 to 11 is normal)
Neutrophil .7 (1.5 and above is good)
Hemoglobin is 11.1 (32-36 is normal)

I too may save MB Anderson as a trump card for the future. The downstairs of my house is looking like it will turn into my refuge for the time it takes to get through my treatment once I need it. I got real tired playing racquet ball last week, this is my first sign ever. I'm planning to Ski in Vail the week after Christmas I bet the altitude will be a challenge.

Are you back at work? how long do you suspect it will take until your numbers are back to normal?

Nick.
_________________
Like tacks we can only go as far as our heads will let us.

pablitosan · Posted: Wed Dec 19, 2007 10:42 am Post subject: numbers

Hi Nick -

No, I didn't have anybody to help me with this -- my first doctor was a clown, and made me so nervous I did a mountain of research on my own. My new doctor's great, though.

Your neutrophil count of 0.7 is where I was at the start of treatment. Like you, I felt fine, but I had been noticing that workouts seemed a lot harder than they should. Cycling 3 miles to my son's school, towing him behind with a tow bar (he's 5), is about a 40 minute round trip. Normally I'd find that a refreshing moderate workout, but it really wore me out. My hemoglobin then was 10.7 or maybe a little higher, just a bit lower than yours is now. (14-18 is the normal range for men). When it got down to just over 10, I started having occasional dizzy spells.

So I think Vail will indeed be a challenge and you should be prepared to take it easier than you might like, especially with the altitude. But you should probably be able to do it. Watch out for dizziness, though - that could leave you in deep trouble on a steep slope. Also, I'd advise wearing a surgical mask on the plane to Vail and back. Getting a cold right now will wipe you out, and the recycled air on planes is the worst possible environment. Hope I don't sound too advice-y here.

It sounds like your numbers have dropped a lot in a month, and your white counts are in the infection-risk range, so if I were you I'd start planning for treatment soon. No point in waiting till you're already wiped out by ultra-low hemoglobin -- better to start with some reserves.

I'd hoped to be in better shape by now, but my hemoglobin is still around 9.1 and I'm needing a 1.5-hour nap every day. Still, I'm feeling a LOT better than 10 days ago, and it does seem like each day is a little more energetic than the one before. My neutrophils are up to 1.0, so I'm out of the risk zone, which is great. In principle hemoglobin should reach normal in about 4 more weeks -- so I'm thinking I'll hit 10 late this week or early next, and be able to work again then.

The psychological lift from seeing my counts start to rise is really huge.

By the way, I see you're in Lynchburg. I grew up in Staunton.
_________________
Paul
Hairy cell leukemia, diagnosed end October 2007
Blog: http://hcljournal.blogspot.com/

Nickin · Posted: Thu Dec 20, 2007 7:45 am Post subject: Re: Hairy Cell Leukemia

How long ago did you move out of Virginia Paul? I have lived here for 10 years after moving down from Syracuse NY. I love it here compared to NY. Did you spend much time on SML? (that might be my other hidaway to recoup)

Also, how much time should I schedule being out of work? I'm guessing a full 3-4 weeks since much of my time can be spent at a desk?

I'm just starting to feel tired when I exercise. Typically I'd push even harder because I would think I'm just out of shape.
_________________
Like tacks we can only go as far as our heads will let us.

Nickin · Posted: Thu Dec 20, 2007 7:55 am Post subject: Re: Hairy Cell Leukemia

Oh By the way! Congratulations..It's been a month since your Chemo pump hook up!
_________________
Like tacks we can only go as far as our heads will let us.

pablitosan · Posted: Thu Dec 20, 2007 10:00 am Post subject: Chemo, time off

Hi Nick - actually I left Virginia when I was 17, so it's been - yikes -- 33 years. My dad taught at Mary Baldwin. Staunton's not much changed, except that the military academies are mostly gone. Love that Shenandoah Valley. (I lived in Ithaca NY 1990-92, so I know your home town too.)

My experience: I felt fine, completely normal, for the first two days of the chemo pump, so you might be able to go to work with it until then. After that, I started to get really tired a lot, and unable to concentrate. It's been 4.5 weeks now and I still need a 1.5 hour nap every day, but if I had to go to an office I could easily manage half days now. I could probably even get through a full day, but only with a colossal headache at the end.

My thought would be to try to get 5 weeks off, starting from the beginning of chemo. You're a bit younger than me so you might recover quicker; I read one account of somebody whose hemoglobin bounced back in 3 weeks, but that's really not normal. Once your platelets recover (about 2 weeks post-chemo), you can take ibuprofen, which helps with the headaches.

On the exercise: I tried powering through the fatigue, and learned the hard way that pushing too much would just wear me out and actually hurt my muscles. If they're not getting enough oxygen, they get really sore and tight when they're worked too much. Walking was the best thing for me, and I'm going to stick with that and very light weightlifting until the hemoglobin's back to 11 or so.

Good luck! By the way, if you want I could email you some of the most useful medical journal articles I found during my research. Use the "PM" button at the bottom of the post to send me a private message with your email address, if you'd like that. It's good for me to be able to help somebody else with this disease -- there aren't a lot of us, you know. Twisted Evil

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

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