Hairy Cell Leukemia

Hi Bob, welcome to Connect.
Thank you for starting this discussion on hairy cell leukemia. I'm glad to hear that your body is responding with to cladribine. Any side effects?

Let me introduce you to a few members. @sian and @mamaitaly haven't been on Mayo Clinic Connect for a while, but I hope they will return to share their experiences with you. I'd like to also tag @margarettassmer @ikampel2 and @lynnkay1956 on this conversation. While they don't have the same type of leukemia, they also have experience with chemo and blood cancer. In the menatime, let's keep the conversation going. That way others with hairy cell leukemia will be encouraged to join in.

You asked about the risk of secondary cancer as a result of HCL and/or treatments. I found a few articles referencing this. See this article describing the results of an NCI 2007 study http://bit.ly/2dAgp9l and this abstract from a 2010 study https://www.ncbi.nlm.nih.gov/pubmed/20001428 It's important to remember that statistics refer to a population of patients and may not reflect your situation.

Bob, have you talked to your oncologist about your personal risk of a secondary cancer? What additional screening do you do to watch out for non-Hodgkin's lymphoma or lung cancer or other secondary cancer?

Hello Colleen,
Thank you for the references. I will discuss secondary cancers with my oncologist at my next appointment. As far as side effects of cladribine, it usually has minimal side effects. No nausea or hair loss. This time I broke out in an itchy rash which I do not remember having after the first course 4 years ago. It is just starting to abate now, just over a month since I left the hospital. I found some reports of a study a few years ago that said this was common for 57% of cladribine recipients. After the treatment my white cell count was critically low, so I received a neulasta shot which resulted in a dramatic improvement after only 2 weeks. This is the same as I experienced after the first course.

I, too have been fighting HCL, and for all practical purposes, am now statistically deceased. Yes, you do have to fight this. As a matter of sharing my story, I will tell you that back in 1998, I started beginning "not feeling well." I could not tell why, and had assumed that it was the smog from the city. I lived 21 miles out of town, was professionally-self-employed, and worked out of a home-office; only getting into town once a week to drop off reports and pick up pay checks. (I lifted weights most of the day, as every time I would walk past my home gym, I would hop on for 20 minutes or so. I weighed 155 lbs. and had a 31.5 waist, 50ish. Later, my primary figured out I was burning 4,000 calories a day, and, I WAS NOT USING STEROIDS OR ANY OTHER DRUGS). In 2001, I took time off from work to paint my house, then I moved out into the wilderness, 325 miles from the closest hospital. A rural clinic and dental clinic were 80 miles away.

I felt great! Like a new man! Then, in 2005, I woke up one day and fell straight out of bed. I felt terrible. (Still lifting weights, but had since retired and spent my mornings fishing for breakfast at the local lake, playing in my garden and other stuff to keep myself busy.)

To make my long story short, I drove that 325 miles to the closest hospital, where I was neglected for almost three years (lost my business, my home, and my finances (no diagnosis, yet). Of course they found all kinds of things wrong with me, like a childhood broken bone, multiple lypomas (neoplasms?), severe arthritis, and every other "old person's" illness/disease they could lay on me.

One day, I even gave my doctor a #10 envelope and asked that it be signed. What was it? "My vacation request!" "What are you crazy, you don't work here!" "I've spent more hours in this clinic then you have!!" Anyway, I was told it was a good joke and time to leave. I said, "I'm not leaving, I want you to call security and have me arrested for trespassing, disturbing the peace, and disorderly conduct!" After a few more words were shared, I said that I wasn't leaving because I was still sick. I DON'T FEEL GOOD! "THERE IS NOTHING WRONG WITH YOU!" (PS-They used to take 16 to 32 tubes of blood from me, each time I went into the clinic.) I AM SICK! I was told to come back the next day for a Hematology consult (which was on a Thursday).

I showed up for my hemo appointment, which took a 10 second glance at my labs and a "come in at 7am, tomorrow for your hip biopsy; which I did; and, on Monday, I started my 40 hour cladribine drip (the only side-effect was diaharea); then a month later, the same thing with the same chemo (the only side-effect was constipation). Of course there were other side effects, but of no value sharing here.

I had a rash, too. Its called shingles (from chicken pox, when I was a kid). I also had a DVT in my left leg, a pulmonary embolism, two dried blood clots on my brain (yes, they hooked me up looking for the squirters and didn't find them); several heart attacks (that I stayed home and suffered with). My oncologist praised me for digging my heels in, saying I would not have survived the 2008/2009 flu season, as my counts were all down to zero.

HCL is a condition where your body tells itself to make from the 500m blood cells it produces each day, reds, whites, and plattlets. The problem is, that most of the cells produced with HCL are duds, and they look fuzzy under the microscope (fuzzy look like hairs, so they call it HCL). You need red blood cells to oxygenate your body, whites to fight off infections and plattlets to tell your body to start the healing process, like from a cut (it is the timing of it that counts). To have low counts means, you are coming out of remission. Your body can't fight wars without the right amount of soldiers.

It is my opinion, that if you had a secondary cancer, but were receiving chemo for the HCL, nobody would know about it, initially, due to your receiving chemo. The HCL, in itself, is "the" cancer, it does not bring on another. You could have more than one cancer, but, the HCL has nothing to do with it. Don't beat yourself up on this. I have been cancer free since 2011, and have beat the odds regarding recurrence. Which means nothing, because I could come out of remission over-night. These are the facts. Yes, I was sick. Yes, I was very sick. Yes, I was once even in denial. This has brought me the worst feelings in my life, but, I have also had the best feelings, too. All I do is try to move on.

The only real side effect of any consequence, is chronic fatigue syndrum. And, it is hard to beat. If my doctor was able to prescribe medications and dosages that would give me optimal health, they would. But, my doctors don't work for me, they work for the insurance company. I have nothing to say about it. Their hands are tied and they cannot treat me the way they were trained to treat me. So, I have no quality of life. I have been bedridden and housebound for over 10 years, and all I can do is suck it up.

PS-The neulasta shot you got after chemo was designed to kick start your white blood cells (I self-administered this shot both times 24 hours after I had chemo). If your white blood count does not rise, you cannot fight infection. This is what the shot is for. It puts a poison in your body, to force you to fight it off. If it does not work (meaning you don't make white blood cells), you will die. I did not write this note to scare anybody. Please educate yourself as there are many places online where you can get information. I pray every night thanks for my life and always ask to help others understand and pull through with this and from all cancers. I will respond as I can to anybody who writes. Everybody needs empathy. I refuse to be pulled into a pity-party! Merry Christmas and Happy New Year! May you all live long, meaningful and happy lives, NO MATTER WHAT!

Hello, all. I have a second thought, about my comments, above, regarding HCL. There is a secondary issue that we should all remember, and, I would assume is very common with all leukemia's, not just HCL. I do not know if it relates to cancers; but I do believe it is important enough to make mention, here, and in the cancer-sections.

I stand by my "secondary"" comments, above; and believe that HCL patients be reminded about secondary "issues" or "subsets" to HCL.

Besides being diagnosed with HCL, I was also diagnosed with having a damaged spleen, meaning enlarged, called "spleenomeglia" ? This condition arises because the spleen goes into overdrive attempting to rid the blood-stream and body of debris caused by and off dud-blood-cells. If you are not diagnosed and treated (chemo) within a reasonable amount of time, the spleen goes into over-load by the large amount of debris that is being accumulated and clogged by this over-load, becomes enlarged, thereby damaging itself by the enlargement. Mine has never returned to normal-size.

I assume this is a similar issue with other leukemia's and wonder if cancers-in-general affect the spleen in the same way? My doctors wanted to remove my spleen, but I decided to live with the condition (I educated myself as to what affects/effects this decision would mean to my health/life-style, etc., which also included discussions with several actual patients who had their spleens removed). Any comments about these two-issues from Mayo staff?

Thank you, and 'all have a great day.

Thanks for sharing your remarkable story @dustedeagle. Good for you for being your own advocate and doing your research.
You are quite right, there are a number of infections and diseases may cause an enlarged spleen (splenomegaly), including:
- Various types of hemolytic anemia — a condition characterized by early destruction of red blood cells
- Blood cancers, such as leukemia and myeloproliferative neoplasms, and lymphomas, such as Hodgkin's disease

The enlargement of the spleen may be temporary, depending on treatment. As you chose, watchful waiting is often a recommended treatment. See a complete list of causes and possible treatments here on MayoClinic.org http://mayocl.in/2ijpVjK

Bob (@rllarocca) have you had any issues with your spleen? Anything to share with dustedeagle?

My doctor said my spleen was enlarged both times my HCL was active. I am back in remission for the second time, after my second round of chemo. It is my understanding that an enlarged spleen is usual with HCL. At one time removal of the spleen was a usual treatment for this.

Hello, I was diagnosed with HCL in 2015. I just went through my 2nd round of chemo last November of 2021.
Beside cladribine I was also given rituxmab. I'm not sure which one or if it was a mixture of the two, I suffered bad convulsions and they had to stop the treatment. I finished the week with the clad but went through a fever all week. When I got home on the Friday my fever got worse so I went to the emergency unit. They decided to keep me and during my stay I couldn't lift both arms. The left arm came back to use after two days. but my right is still a problem. I have about 2 inches of dead nerve in my right shoulder. IF, it comes back it could take up to 2 years. Has anyone had anything similar?

Thank you

@phyreguy79, you must be worried about regaining the use of your right shoulder. Are you doing physical therapy? Or is that not recommended?

Hello Colleen, I was told IF it comes back, it'll be two years or more. I've done physio to help strengthen the the arms and shoulder not affected. I do it mostly at home now and feel good enough to try playing hockey again.

That's fabulous. Just in time for hockey season too. Enjoy getting back into training.