CLL & Splenomegaly

[swee2000]

My husband was diagnosed with Chronic Lymphocytic Leukemia back in 2005(right before our wedding). Up until today, we were in the "watch-and-wait" mode, going to the oncologist every 3 months for blood work and every 6 months for CT scans. He also had a bone marrow biopsy & aspiration done once, about a year ago.

Well, today's visit was anything but "normal". For starters, my husband's WBC count dropped, from 54000 all the way to 37000. I realize these jumps & dives are typical for CLL, but his count has never gone down more than 2000-3000 at a time. On the contrary, it has jumped 18000 in a 3-month timeframe, and I think it was noted at his last visit in October. Second, while listening to my husband's heart, the doctor seemed to take extra, extra, extra, extra, extra looooonnnnnngggggggg. When he finally stopped, he made some brief comment about detecting an irregular heartbeat, but then moved on as if nothing was wrong. My husband has never had any cardio issues before and this comment about irregular heartbeats set off bells in both our heads.

But here's the most concerning part of the visit, and my true reason for posting: While checking my husband's lymph nodes and spleen today, the doctor became very concerned & alarmed when palpating the spleen, stating "it's very, abnormally enlarged". According to the latest CT scan on file, which was done about 6 months ago, my husband's spleen was enlarged at that time, too. But the doctor wasn't able to palpate it on physical exam back then. So now he ordered for my husband to have CT & PET scans done this week. He also mentioned that my husband may have to start chemo(w/Fludorabine) ASAP, getting it every day for one week/month, as well as blood draws every day while on chemo.

Has the leukemia reached a "point-of-no-return"? How much time does my husband have? How serious is the splenomegaly? Will it get better? Worse? What stage does this put my husband in? Will he need chemo for the rest of his life, once it's started? Will he have to be hospitalized every month while he's getting the chemo? Will he have to get a VAD, like a Med-port, PICC, or Hickman?

Thanks, ahead of time, to anyone who replies. I'm just a very scared wife right now........

[dottie11]

Chemo is given as an outpatient in a very cold room.  Wear sweats and take a blanket and reading material as well as snacks, etc.

You can walk to the bathroom and around the halls when the nurses hook you up to a battery.  The infusion lasts 4-6 hours typically.

Any short term problems should become evident right away and the nurses will slow down the drip.  Usually it is given really slow to start with.

I got a really long remission.....had infusions in 2004.  Also, I have gotten into a lot of natural remedies.....check out EMDR.  Sue

[swee2000]

I just saw your response to my original posting about my husband, his CLL, and his (suspected to be) enlarged spleen. First, thank you for sharing your story. It is a comfort to know that, however unfortunate, others out there understand what my husband is going through and he & I are going through together.  

Since I won't have definitive answers until 1/25 about what's going to happen next, I was hoping that I could ask you a couple questions about your experience. If you'd prefer not to answer, I completely understand. But if you choose to answer any or all of them, please know that I am extremely appreciative & grateful for any feedback you give me. Here are my questions:

1)When you underwent the chemo treatments, were they on an outpatient basis or were you hospitalized every month for the 1 week that you received the chemo?
2)If you weren't hospitalized, how long did one day's worth of chemo take to infuse?
3)What kinds of side effects did you experience?
4)In your response, you mentioned that you could easily go out & run errands right after a treatment. But did the chemo restrict you in ANY way or were restrictions(of any kind) placed on you because you were more susceptible?
5)If you were working at the time, how did receiving chemo for 6-12 months impact your job & your ability to do it? For my husband, this is probably the next biggest concern of his, outside of the expected & normal worries one might have when finding out they'll need chemo, He is a workaholic who normally travels out-of-state, 3-4 days/week. When he's in-town, a typical day consists of him waking up around 5 or 6 for work, not returning home until 7 or 8 at night, and finally going to bed around 10:30pm. And when he's out-of-town, things run about the same, or he may work even later(especially if there was a business dinner to attend). So I am confident that all of this has weighed heavily & constantly on his mind, and probably just as much as hearing the news about needing chemo in the near future.

[justgotpaid]

I have had idiopathic(unknown origin) splenomegaly for 2 years now.  Although I do not have a diagnosis, I believe it is some form of lymphoma due to my other symptoms, such as fatigue and itchy skin with no rash.  I dont know a lot about CLL, but I do know much about the spleen as I have researched everything I could find about it for the last 2 years trying to find what my problem might be.  If your husbands blood counts do no resolve, he can have his spleen removed.  This almost always resolves blood count issues.  That being said, most doctors now days will try chemo to see if it shrinks the spleen, to resolve the blood counts.  I am trying to get a diagnostic splenectomy now to get some answers.   Since your husband has never taken chemo, he may respond quickly to it and be able to keep his spleen, if not he can have it removed.  From what I have researched, splenectomy has no effect on the outcome of cancer one way or the other, so if he has it out it will make him feel better, but will not hurt his chances of beating the cancer.  My 2 cents.

[eve0]

My first suggestion is, don't panic.
I know that's easier said than done since I also have CLL.
You shouldn't hesitate to ask your husband's doctor the exact same questions you asked here.
An absolutely wonderful resource for anyone dealing with CLL is clltopics.org
It's an extremely comprehensive site.

There are so many factors involved in decision making when it comes to CLL that I'm not comfortable offering any type of advice on your husband's situation.
Something I am comfortable sharing is that I've undergone chemo therapy (a combination of Fludara and Rituxan).
I underwent six cycles of chemo (1 week a month for 6 months), and 6 months of maintenance chemo.
It wasn't the least bit unusual for me to go grocery shopping, or run errands right after my treatments.
Occassionally I was tired for a few days after treatment and just took it easy.

I have very small veins (the family curse), so I had to have a port-o-cath implanted.
The procedure was a same day surgery.
Having it removed involved a painless 15 minutes in the surgeon's office.
I was pleased with my experience with the port-o-cath.
It allowed me far more freedom to move around during chemo, and spaired my veins any potential scarring (or thickening).

Unfortunately I only achieved a partial remission.
However, I feel great.
Most of my blood counts have remained in the normal range for 10 months now.

Being diagnosed with CLL doesn't have to be the beginning of the end.
I take good care of myself, keep up on the latest research, remain active in the decision making, and bombard my oncologist with questions.
I plan on being around for a long time.

I wish your husband and you the best.

eve0