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Joined: September 21st, 2017, 6:19 pm

September 21st, 2017, 7:11 pm #1

Hello. Glad to find this site. I'm a 56 year-old male. I showed up at the hospital on Monday, July 10th for a laparoscopic prostatectomy (stage II cancer) and was turned away because of low blood counts (WBC 1.42, platelets 61, neutrophils# 0.92). By that Friday, had a diagnosis of HCL. Got a shot of Lupron to stop testosterone production in order to slow the prostate cancer (and give me hot flashes) while we dealt with the HCL. Finished 1 week of chemo (cladribine) on August 2nd. By Sept. 7th, WBC was up to 3.62, platelets around 150, and neutrophils# at 3.00. Hematologist then cleared me for prostate surgery scheduled for Oct. 19th. Will have CBC on Oct. 12th to make sure the numbers are still improving and that I'm good to go for surgery.

Never heard of HCL before that day. Was a little freaked when the doctor said the word "leukemia", but quickly learned I was fortunate in that it only required a single 7-day chemo treatment. I am very grateful to my hematologist and modern medicine for getting the HCL into remission so quickly so we can get back to the original problem. (And will be real happy when these hot flashes subside!)

Assuming the two cancers at once is coincidence, but will be having genetic testing soon to see if I'm positive for any syndromes.
Last edited by 515pdc on September 21st, 2017, 7:16 pm, edited 1 time in total.
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Joined: March 27th, 2014, 7:18 pm

September 22nd, 2017, 1:40 am #2

Welcome, Chet. You are correct that HCL really isn't that bad, and it sounds like you've had a quicker recovery than average.

HCL can occasionally run in families, but it's not associated with particular genes. So you might have a genetic issue, but it probably caused the prostate cancer instead of the HCL.

I hope you'll let us know how it goes.
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Joined: November 8th, 2012, 4:45 am

September 28th, 2017, 6:45 pm #3

Hello. Glad to find this site. I'm a 56 year-old male. I showed up at the hospital on Monday, July 10th for a laparoscopic prostatectomy (stage II cancer) and was turned away because of low blood counts (WBC 1.42, platelets 61, neutrophils# 0.92). By that Friday, had a diagnosis of HCL. Got a shot of Lupron to stop testosterone production in order to slow the prostate cancer (and give me hot flashes) while we dealt with the HCL. Finished 1 week of chemo (cladribine) on August 2nd. By Sept. 7th, WBC was up to 3.62, platelets around 150, and neutrophils# at 3.00. Hematologist then cleared me for prostate surgery scheduled for Oct. 19th. Will have CBC on Oct. 12th to make sure the numbers are still improving and that I'm good to go for surgery.

Never heard of HCL before that day. Was a little freaked when the doctor said the word "leukemia", but quickly learned I was fortunate in that it only required a single 7-day chemo treatment. I am very grateful to my hematologist and modern medicine for getting the HCL into remission so quickly so we can get back to the original problem. (And will be real happy when these hot flashes subside!)

Assuming the two cancers at once is coincidence, but will be having genetic testing soon to see if I'm positive for any syndromes.
Newbie...welcome to the board and best of luck on your surgery

Sheepdawg
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Pat
Pat

November 4th, 2017, 2:10 am #4

Hello. Glad to find this site. I'm a 56 year-old male. I showed up at the hospital on Monday, July 10th for a laparoscopic prostatectomy (stage II cancer) and was turned away because of low blood counts (WBC 1.42, platelets 61, neutrophils# 0.92). By that Friday, had a diagnosis of HCL. Got a shot of Lupron to stop testosterone production in order to slow the prostate cancer (and give me hot flashes) while we dealt with the HCL. Finished 1 week of chemo (cladribine) on August 2nd. By Sept. 7th, WBC was up to 3.62, platelets around 150, and neutrophils# at 3.00. Hematologist then cleared me for prostate surgery scheduled for Oct. 19th. Will have CBC on Oct. 12th to make sure the numbers are still improving and that I'm good to go for surgery.

Never heard of HCL before that day. Was a little freaked when the doctor said the word "leukemia", but quickly learned I was fortunate in that it only required a single 7-day chemo treatment. I am very grateful to my hematologist and modern medicine for getting the HCL into remission so quickly so we can get back to the original problem. (And will be real happy when these hot flashes subside!)

Assuming the two cancers at once is coincidence, but will be having genetic testing soon to see if I'm positive for any syndromes.
Hi Chet. Good to meet you, wow you bounced back from HCL really well. Here is to the same for all health issues. God Bless - keep us updated

Pat
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Joined: September 29th, 2013, 1:44 pm

April 3rd, 2018, 3:22 am #5

Welcome, Chet. You are correct that HCL really isn't that bad, and it sounds like you've had a quicker recovery than average.

HCL can occasionally run in families, but it's not associated with particular genes. So you might have a genetic issue, but it probably caused the prostate cancer instead of the HCL.

I hope you'll let us know how it goes.
Hi WAID,
It is very interesting to see this comment by you regarding HCL running in families. My husband's father was diagnosed with leukemia in the mid 60's and lived a normal life to the 80's when he died of a heart attack. We never knew what type of leukemia he had but he never had any treatment and did very well. When my husband was diagnosed 10 years ago I immediately thought about his father but all the doctors said that it is not inherited so the thought was dismissed. I really think that he also had HCL because of his symptoms and no treatment for leukemia. Now I will watch my children and grandchildren a little closer.
Carol
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Jim weathers
Jim weathers

April 25th, 2018, 3:14 am #6

Welcome to the site.   We wish you well.
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Joined: May 4th, 2010, 1:03 pm

April 25th, 2018, 3:54 pm #7

Chet,

HCL may not be that bad, especially when its diagnosed, treated, and monitored.  The down side is that if its not diagnosed and treated it can kill you.  When I was diagnosed in 2009, I didn't know about this board and could only find one other person that had an active case.  He died at age 37, three weeks after diagnosis and before chemo.  My theory is that HCL kills a lot more people than we think and the cause of death is listed as "General Infection".  I say this because some deaths that result from high fever and infection are otherwise unexplained.  I know that when I was diagnosed in 2009, my blood counts were so low across the board that my Hematologist told me to wear a mask and avoid people as much as possible until my blood counts were good enough to prevent infections/illness from my low immune condition.  The year before my diagnosis I had a series of medical problems caused by low immunity and just didn't know what the cause was.  I had a root canal that wouldn't heal, resulting in having a  tooth pulled due to infection.  Nearly had a toe amputated, took 20 days of antibiotics to heal, and lost a lot of blood after shoulder rotator surgery.  A  few hours after surgery (out Patient) after I got home I started gushing (pumping blood) from the incision, ended up in the emergency room getting the incision glued shut.  That was due to low platlets.  None of these resulted in an HCL diagnosis.  An annual blood test at my local VA clinic caught the low white, low red, low hemocrite and low platlets and luckily I got the treatment that my GP and the Hematologist both agreed prevented me from getting dead soon.  With all of those indications it seems that one of the Doctors/Dentists I had seen would have suspected something.  Several Doctors I have seen since 2009 said that I was the first case of HCL they had encountered, but they did remember it from medical school.     FLCoyote
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Joined: January 17th, 2009, 5:12 pm

May 5th, 2018, 8:01 pm #8

Chet, it could be a lot worse kind of leukemia.  HCL is very treatable.  

I'm the old timer, remission for 26 years.  Back in the stone age when I was diagnosed in 1991, there were only medical journals.  It took a year to finally diagnosis HCL with many different treatments til 2CDA.

This group is very helpful.

Lou
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