The Leukemia & Lymphoma Society - Fighting Blood Cancers
25 Replies Latest reply: Feb 14, 2011 9:41 PM by JustJoan19 RSS

new to these discussion boards...

kimiline Registered Users
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Hi, okay, this is my first time on a discussion board so I hope I can post and find it again later!  With that said...

 

it's also my first time talking to anyone else diagnosed with HCL.  I will start by introducing myself; my name is Kim and I was diagnosed in July 2009 with HCL, after 3 years of mis-diagnosing low platelets that began during my 2nd trimester of pregnancy (my first).  Yes, my spleen was massive and my platelets were about 40k when I started 2-cda in late August.  7 days, continuous home infusion.  I got neutropenic fever and spent the next 7 days in the hospital (also had a reaction to the picc bandage during this time causing some sort of chemical burn).  Got over that, my spleen went right down and as of last CBC, my platelets were up to 159k and everything else was going up too.  Now I'm just tired a lot (heard this was common as a long term recovery effect), and nervous for my upcoming bone marrow biopsy on Dec. 17th.  Also a bit lonely; feels like now that I'm "back to normal" everyone thinks the book should be closed, end of story.  Going through this has changed me, I'm not always sure what to do with myself now, I feel like I should be doing more, oh, and why should I be struggling with this after the fact, when so many others that I know have gone through so much worse.  I'm thinking exercise will help lift my mood, and finally reaching out to folks who have been there. 

 

One thing I know, it's definitely nice not to have big ugly bruises anymore!

  • Re: new to these discussion boards...
    Wobbles Registered Users
    Currently Being Moderated

     

    Welcome aboard Kim!

     

    I am sorry to hear that this dreadful disease afflicts you, but you’ve come to a good spot for support and for comparing notes.  Congrats on shrinking spleen and growing platelet numbers.

     

    Right now I only have a “suspected” case of HCL because my leukemic cells are missing the CD103 marker.  My hematologist does not seem too concerned about the lack of a definitive diagnosis, mostly because I can get away with a wait and watch approach.  Most of my concerns revolve around low neutrophil counts and anemia.  I have a lot of problems with fatigue.

     

    Next week I will begin a pilot walking program for folks with leukemia, lymphoma and myeloma.  A physiotherapist in my local leukemia/transplant center is conducting the program.  She is trying to figure out if exercise can help with fatigue.  I know it helps with my spirits, but I am uncertain about how much I should push myself.

     

    I look forward to your participation on discussion board.

     

    Joe



    • Re: new to these discussion boards...
      msl963 Registered Users
      Currently Being Moderated

      Hi Kim,

      Welcome to our little club.I was dx with HCL  11/8/08 . My treatment was a little different than everyone else on this board.I had  cladribine for five days ,then rituxin once a week for eight weeks. My cellularity was 70% .My cellularity is .28% after the treatment.Hopefully this will hold me over for a long time.You will find we all have different results.My treatments ended in jan 09.I still have energy level problems but that doesn't seem to be the norm . I dreaded my second BMB but it wasn't so bad.I always believe exercise makes us feel better.I just can't seem to get myself going.I remember those bruises.If I leaned against something I would get big bruises.That is when I new something was really going wrong.Wow it took a long time for your dx.It must have been rough on you.I took only a month and that seemed to long.I was in bad shape by then.My spleen formed a golf ball sized bubble under my left rib then excruciating pain in my right shoulder.My ribs cage felt like someone split my breast bone and was pulling it open.I am glad that is over with.Before HCL I never got sick not even a sniffle or cold.I never called in sick at work for twenty five years.When I finally did the guys at work made a bet I would show up anyway.It sounds as if everything is going in a positive direction for you now and I hope your BMB confirms that.Write in and let us know more.What was your cellularity?You will find a lot of help as others check in.Joe is very knowledgeable so he is good to chat with.Joan will inspire you to exercise.I don't think the book will ever close but life goes on. Keep us posted and keep in touch.

        The weather was really nice in South Jersey today.Spent the day with my granddaughter Maylee.That is always the best medicine for me.

           Good Health To All

                                             Mark

  • Re: new to these discussion boards...
    JustJoan19 Registered Users
    Currently Being Moderated

    Hi Kim,

     

    I'm Joan another member of Team Hairy Cell.   I hope you can read back through the threads to see how HCL has impacted all of us.   I was diagnosed in Feb 09 - cellularity 90%, spleen size of a football, anemic, couldn't eat or walk up a flight of stairs.  I also lost 10 pounds due to the spleen.   I had the same treatment that you had and am doing fine. I had the treatment at home and was able to work.  I did not have any complications and was back in the office in 3 weeks from the treatment.  So yea it was pretty easy compared to what others endure. I don't know whether that is good or bad, it just is what it is.

     

    As Mark noted, I do exercise  and love to run.   When I was sick I couldn't run 10 yards without stopping.  In September I did the Chicago half marathon so I consider that pretty good.  I was slow but I finished. I think it was my way of rationalizing this all.

     

    I can honestly say I don't feel the same since the symptoms appeared in Dec of 08, but I am 150% better then where I was a year ago and for that I am grateful. I tire easily and need my 7 hours of sleep a day.  I do  not have the energy I had years ago but I am thankful to be where I am.

     

    I understand your comments about how other people react.  I found it really difficult to tell family and friends because of how it effected them.  It was extremely hard for my family as one of our nieces did not survive lymphoma 10 years ago.  Very different disease but it was very sad and is a wound that is still somewhat open for us all.  So you can imagine how hard it was to open up a different chapter of this disease to my family.  I really only told my family and a few close friends.  I found telling fewer people better for me and if I require more treatment, I may open the vault a bit more.    My husband has been my best friend through this and continues to be supportive.

     

    My spleen has reduced but not as much as the onc would like and my cellularity is around 30%. So I've had 2 BMBs since my original in January and have one scheduled for February.   My blood work is really good though, so we wait and see. 

     

    I guess I feel a bit lonely with this disease but I don't want others to worry.  I see the stressed look on my husband's face every time I have labs or  I go to the doc, or  I fall asleep watching TV.   He always thinks it is coming back.  I really try not to dwell or include my disease in every conversation.  I also wondered "what do I do now?".  Do I change my diet, eliminate toxins, exercise more, what? No one seems to think any of that matters. The only person who has given me any advice is my internist who told me to learn to balance life and work and find ways to reduce the stress in my life.   So I am working on that aspect.   It is hard because I can't sit still for very long - I always need to be doing something, but I am learning.  My friends are helping me to relax more as well.

     

    We will keep good thoughts for your BMB next week.   I am sure it will be great and you will be able to get back to normal.   Our lives are a bit of a roller coaster now - ups and downs with the cadence of our blood work and doctors appointments.   But you will get accustom to it as it becomes part of your operating routine.  Just take time for your self and go easy.

     

    Keep us posted as to your progress - always here to help

     

    Joan

  • Re: new to these discussion boards...
    mozartplayer Registered Users
    Currently Being Moderated

    This is the first time I've posted to this board although I was diagnosed with HCL 4/10/09 which I probably had at least two years earlier. Did not know about this discussion board until just yesterday, but am now registered. 

     

    I was diagnosed and treated for prostate cancer with radioactive seeding on 8/1/05 with very few side effect thereafter, but experienced a major DVT on 1/23/06 which led to 3 days in the hospital. The consulting hematologist went into the hospital's computerized medical system and discovered that the CBC blood test done the day of my prostate outpatient treatment that prior August indicated all of by blood counts were below normal ranges.  The urologist who had ordered the CBC either didn't think it was important enough to tell me that day or overlooked it.  To make a long story short, I left the hospital after 3 days and later began seeing an oncologist/hematologist who eventually did a bone marrow test on 4/10/07 which came back with diagnosis of hairy-cell leukemia.  The odd thing is that I've had no symptoms to speak of; that is, no fatigue, spleen in normal as are lymph glands. Have been seeing my oncologist every 3 months,but blood counts have remained essentially unchanged with last CBC on 11/24/09 showing WBC of 2.86, RBC of 3.49, hemoglobin 12.0, platelets 121, and neutrophils 1.05.  I'm still on warfarin blood thinners because of the DVT in January 2006 and a second minor DVT in April 2007 after my internist had taken me off the warfarin two months earlier. I suspect I'll be on the blood thinners now forever, but it could be worse because that's the only prescription drug I take other than self-injecting 1 ml of B12 once a month.  At age 71, I'm still physically active although severe arthritis in a hip and the DVT forced me to give up long-distance running in 2006, but I still ride my mountain bike and work out on an exercise bike inside during the winter every other day. 

     

    I suspect my prostate cancer and HCL could possibly have come about as a result of exposure to Agent Orange during my Air Force tour of duty in Southeast Asia 1961-63. I was actually never stationed in Vietnam where we all know Agent Orange was widely used, but was stationed on Okinawa where I learned earlier this year that Agent Orange was being sprayed across parts of the island during the time I was there and the VA Board of Appeals in 1998 awarded VA compensation benefits to a former Marine who never served in Vietnam, but was stationed on Okinawa during the time I was there.  The Department of Defense is not very open about where and when Agent Orange was sprayed, but I also learned this year that it was sprayed in the Canal Zone where I was stationed in 1964 after leaving Okinawa. Rather ironic that I've been diagnosed with both prostate cancer and HCL, both of which are diseases the VA considers presumptive in being linked to exposure to Agent Orange.

     

    As for having hairy-cell leukemia, I'm just thankful I don't have one of the other more aggressive forms of leukmia which killed two of my former colleagues in recent years.  I had never heard of hairy-cell leukemia until I was diagnosed with it and I spent 35 years working for the Social Security Administration during which time I read thousands of medical reports, many of which involved leukemia patients, but don't recall any with HCL.  I suppose it's because it's so rare 

     

    I don't know how many readers of this discussion board are aware of a blog written by a gentleman with HCL who's participating in an NIH clinical trial in an attempt to discover a total cure for the disease.  The trial consists of the conventional Cladribine chemotherapy followed 6 months later by weekly infusions of Rituxamab for about 8 weeks.  For those who are interested, his blog can be found by Googling "Jon's Hairy-Cell Leukemia Blog". It's an interesting blog and well worth taking a look. The MD Anderson cancer center in Houston recently received a grant to begin the same type of clinical trial was what Jon is going through. He is almost through his series of Rituxama infusion which is producing promising results. 

     

    Good luck to you and all others who are living with hairy-cell leukemia.

     

    Jim Corbett

    Grand Rapids, Michigan

  • Re: new to these discussion boards...
    mozartplayer Registered Users
    Currently Being Moderated

    Sorry for my typo in response just posted when I wrote I was diagnosed with HCL 4/10/09, but it was actually 4/10/07. My mistake.

     

    Jim Corbett

    • Re: new to these discussion boards...
      Wobbles Registered Users
      Currently Being Moderated

       

      Welcome to our discussion board, Jim.  It sounds like you have a lot to add.  My hematologist is still not entirely sure that I have HCL.  Her uncertainty is due to the fact that I am missing the CD103 marker and also because I also have something going in with my T-cells.

       

      My main problems have been fatigue and a tendency to pick up infections.  I am neutropenic (neutrophils around 1 per nanoliter), monocytopenic (monocytes are usually between 0 and 0.1 per nanoliter) and anemic (currently hemoglobin level is 8.8 grams per liter and rbc’s are at 2.2 per picoliter).

       

      I am not sure where my blood disorder came from, but I used to work in a high radiation environment when standards were less stringent.  I am tempted to think that I was bombarded with too many whatnots.

       

      I will take a look at Jon’s blog to see how he is progressing.

       

      Once again, welcome to site.

       

      Joe


      PS Don't worry about the date thing.  There is more than one convention floating about.  Nowadays I write December 25, 2009 instead of 12/25/09 or 25/12/09.  I am pretty sure the Europeans do the latter.  Laura, one of the posters here, recently came back from a stay in Belgium.  She'll be able to clarify.

       

       



      • Re: new to these discussion boards...
        kimiline Registered Users
        Currently Being Moderated

        Hi All, thanks for your welcome and sage advice.  It's very nice to know there are people going through the same thing, and wonderful to reach out when I have been struggling for a while. 

         

        I wanted to share with you that I did have my bone marrow biopsy last week, and the Dr. called yesterday to say they saw no evidence of any hairy cells in the samples they took!  I feel like I received the best early christmas present ever.  My hips still hurt quite a bit from the core sampling; but my family joined the YMCA this week and we went for our first day of exercise last night.  I intend on making it an annoying habit, once my clingy 3 year old adjusts to time without me in the child watch zone.  It feels like the new year has just started already. 

         

        Two things on my mind now, first, I'd love to know the demographics of this board, from what I've read HCL is much more common in older men (albeit still rare), or anything you know about it.  Jim brought up an interesting idea about the potential for exposure to chemicals possibly causing this.  Joe was potentially exposed to radiation.  Anyone else?  I was 30 when this started, and I've worked 10 years in a university lab, handling chemicals on an almost daily basis.

         

        The other thing is my general annoyance with the incomplete nature of my therapy.  What I mean is; once I finally found a good doctor, I received excellent physical health care, but it really seems like when one receives a cancer diagnosis, whatever it is, why not hand the new patient a packet to take with them, filled with information on resources available and steps folks can take to help them through the process?  Like now that I'm completely done with treatment, and I'm looking more closely at those pamphlets in the resource center and just now learning about information that would have helped me in the beginning.  A whole pamphlet dedicated to neutropenic fever!  The local Cancer Lifeline, free classes on diet and exercise?  Support groups, etc.  Did anyone else receive that sort of "whole health care"?  What would have been helpful if you didn't? 

         

        Thank you for having this discussion board so I can aire my thoughts!

        Happy Holidays everyone,

        Kim

        • Re: new to these discussion boards...
          Wobbles Registered Users
          Currently Being Moderated

           

          Kim,

           

          That’s wonderful news about no sign of HCL in your bone marrow.  I know wha you mean about the soreness. That lasted for a few days for me, not quite as bad as yours, but still “a pain in the butt”.

           

           

          I am older man (60 and counting), but it all started years ago, maybe five years.  I have definitely been exposed to radiation (protons, neutrons, gammas, muons, pions,  … the whole zoo).  I had to stop going into the high radiation areas during a few of my work years because my levels had exceeded 5 rem for the year.  Nowadays, the acceptable radiation levels are lower.  I think only 2.5 rem is allowed.

           

           

          Well, I have to rush to help Santa now, but I wish you and all the other HCL’ers a blessed holiday full of joy and peace.

           

           

          Joe

          • Re: new to these discussion boards...
            Jeff33 Registered Users
            Currently Being Moderated

            Hi Everyone!

             

            I just joined these forums and was stopped in my tracks by Jim's post.

             

            Since my battle started with HCL, my prostate has been a pain in the butt!   I have had an enlarged prostate for over a year, gone thru 2 different treatment drugs and it still has not been resolved.

             

            But what got me was your being in Okinawa while in the Air Force.  I too was in the Air Force stationed in Japan (1991-93) working on the flightline with F-16's.  I am 37 years old and was diagnosed at the age of 34.

             

            Have a great day tomorrow!

            Jeff

            • Re: new to these discussion boards...
              Wobbles Registered Users
              Currently Being Moderated

               

              Welcome to the HCL club, Jeff!

               

              I am sorry to hear about your enlarged prostate gland.  I discovered mine was slightly enlarged when I had an abdominal ultrasound performed shortly after my first visit to my hematologist.  Nothing is being done about it because the enlargement is only slight and I have no symptoms from it.  My PSA levels are fine and nobody is saying it might be cancerous.  I am happy to ignore it.  I am sure the enlargement is age related.

               

              Joe



              • Wobbles!!!!!
                JustJoan19 Registered Users
                Currently Being Moderated

                Joe,

                 

                WOW  - so good to hear from you ...how the ell are you?  We have missed you terribly.  I was in Vancouver last week and absolutely loved it!

                 

                How are you..pls fill us in.

                 

                Joan

                • Re: Wobbles!!!!!
                  msl963 Registered Users
                  Currently Being Moderated

                  Hey Joan,

                     How are you doing? Thought I would let you know this is an old post by Joe.Check the date. I haven't heard from him.

                                                    Mark

                  • Re: Wobbles!!!!!
                    JustJoan19 Registered Users
                    Currently Being Moderated

                    Hi Mark,

                     

                    Yea....when I took another look I realized it was a year ago.  I am hanging in there.  In remission which is good and trying to get my life back in order.  Despite the success of treatment, this has been a rough road on me and my husband. 

                     

                    I had a big blood draw today to test the flow.  I was clear in November and am hoping I am sustaining my remission.  How are things with You? 

                     

                    J

  • Re: new to these discussion boards...
    stell Registered Users
    Currently Being Moderated

    Hi all and Kim,

    I am a 36 yr old female with no known exposure to radiation or anything... I was diagnosed 11/08 but didn't need treatment at the time. Now my platelets are 48,000 and the onc is talking treatment which is scary.  Kim - I've never been able to find another "young" woman with this disease so I'd love to chat/email more with you if you are still around. One of the things that is hard is that I wanted to have two children and now I'm afraid that it won't be possible (I have one 4 month old conceived with the permission of my onc.)  I had talked with him about the possibility of having another one and he originally said yes three months ago and then within three months my platelets went from 111 to 48 and I have more hairy cells which "surprised" him.  - Seriously, the last thing one wants to hear is that their onc is "surprised" by the bad results. Sigh.  Anyway, I don't know how to balance the idea of having 'relatively' not bad cancer with my fear that in fact this cancer can suddenly turn on the way mine did. And if it can do that, it might NOT respond to treatment the way it is supposed to. And is it totally irresponsible to try to have a normal life and have children when this disease could turn on and kill me?  Or I could become too tired to care for them properly?  What is the balance between realizing this is a serious disease but also trying to live a normal life? Anyway if anyone has any insights, I'd appreciate it.

    Thanks

    • Re: new to these discussion boards...
      kimiline Registered Users
      Currently Being Moderated

      Hi Stell,

       

      I would love to email you personally but cannot figure it out.  So I'm in recovery now from treatment last summer, and (knock on wood) I feel GREAT.  For me, the trick was getting some exercise.  I just joined the Livestrong program at the local YMCA; 3 months free membership, group classes twice a week, personal trainer, nutrition coaching, etc. etc.  My 3 year old is in preschool while I go there.  They also have onsite childcare...

       

      I think a little prep goes a long way, my treatment sucked, but thank goodness I had family & friends around to take care of my girl and everything else during this time.  I was a nervous wreck the weeks before, got really tired the week of, and spent the following week in the hospital.  I was up taking care of my daughter a week following that though.  We stayed away from playdates and such for a while after that, but eventually things have turned out okay.  I was tired for a long time afterwards, but I can't say enough about taking the time for yourself to exercise.  I just want to stress that it's doable.  Treatment, recovery, coming to accept what is and what you can and can't control; it's all doable.  Do your research, read up on what you can, arm yourself with knowledge.  Don't just rely on your onc. to give you all the information.  I think it's scariest when you just don't know.  Feel free to email me; kimiline - at - hotmail. com.

    • Re: new to these discussion boards...
      Jeff33 Registered Users
      Currently Being Moderated

      Stell,

       

      I too am 36 and have had (and still have), all those thoughts about how do I continue from here.  Do I have kids?  What about a family? Do I need to worry about retirement?  What does this cancer mean regarding my future?  Do I make plans?  Do I go on as normal?

       

      I dont know these answers either.

       

      To be honest,  I have been living my life to the fullest.  As if I wont be on this earth in 12 months.  And, until I can get a handle on these questions, I will continue to live this way (Actually, it's rather liberating).

       

      Sorry that you too have to go thru this battle!

       

      Have a great day everyone! 

      Jeff

  • Re: new to these discussion boards...
    stell Registered Users
    Currently Being Moderated

    Thanks Jeff and Kim and Joe and Mark.

    I am having a total panic attack.  I talked to the nurse today to try to get some sense of what happened b/c in Dec they thought I wouldn't need treatment for at least a year. Now they are talking about near immediate treatment and I said what happened?  And she says they don't know and my disease progressed faster than they thought it would.  This is terrifying to hear b/c supposedly this disease responds well to treatment but if it can suddenly surprise them with it's onset what if it WONT respond to treatment. It is like hearing I have something different and unpredictable when I had made peace with something else.  If I skip the splenectomy my doctor is recommending strait to pentostatin? which he says is old school but has few side effect and fewer secondary cancers. it would be one dose every two weeks for six months.  has anyone had this or been told pros and cons between this old school med and the newer one week meds??

     

    thanks for the continued support.  also does anyone have any advice about how to sleep???

    • Re: new to these discussion boards...
      Wobbles Registered Users
      Currently Being Moderated

       

      Stell,

       

      I am sorry to hear about your sleeplessness.  That’s something that I’ve been battling as well.  I have been given some lorazapam to help combat my sleeplessness, but I am not sure you can go the pharmaceutical way because you are breastfeeding.  Perhaps, you can ask your doctor what is the best course of action.  Besides using lorazapam, I do the following helpful things: keep regular hours, go to bed only to sleep so that I associated bedroom with sleeping, go through a ritual before retiring, get exercise in the day, avoid napping, etc.

       

       

      Here is a link that shows some of the differences between pentostain, cladribine, and splenectomy as treatment options for HCL.  It also quantifies the response rates.

       

      http://www.cancer.gov/cancertopics/pdq/treatment/hairy-cell-leukemia/HealthProfessional/page5

       

       

       

      I have had the same reaction as you when my numbers go awry.  It is disconcerting to see our health change so dramatically in a short time.  Is it only your platelets that are causing problems?  If so, have they mentioned platelet transfusion?  When my RBC’s  go south, I get packed RBC transfusions.  Then I am good for months.

       

       

      There is one potential silver lining to treating cancer when it is in an aggressive state: the cancerous cells will gobble up the chemo more rapidly and thereby die more quickly.  I would not rush off with the idea that sudden change in numbers means that your disease will be refractive to treatment.  Don’t despair.  Hope.  That’s the better direction.

       

       

      Joe

    • Re: new to these discussion boards...
      lkgervitz Registered Users
      Currently Being Moderated

      Hi everyone,

       

      My name is Laurel and although I have been on this message board since Feb. 2009 (or atleast on the older version and maybe on this one since April 2009), I haven't been active at all since maybe Sept or Oct. 2009, and I am really, really sorry about that.  I have recently moved from Belgium to Atlanta, GA, and it was a hard adjustment.  So, I apologize for being so quiet.

       

      Just to tell the new people (welcome!) a little about me:

       

      I was diagnosed in Belgium with HCL in Jan 2009.   It was really lucky that I even found that I had this because I really didn't have any signs.  Sure, I bruised alot, but this has always been my norm, and I was tired, but again, NORMAL.  I had been convinced that I have hypothryoidism for awhile since I had a 10 lb weight gain and even though I worked out 6 days a week and ate really healthy, I couldn't lose a pound.  I had seen a couple general physicians, but they all told me that my thryoid levels were fine.  So, I finally sought out an endocrinologist, who ran a whole blood panel and he found the leukemia.

       

      I was really shocked that I had this, especially something so rare.  And I am young (33), which I know is not that young, but definitely younger than the common 53 year old males who usually get this.   I had treatment soon after diagnosis because my platelets were in the 60,000's and my neutrophils were under 800.   I had a 5 day, 2 hour infusion of Cladribine starting on March 1, 2009.  I didn't get sick or lose my appetite or anything.  I was just tired, and I had to stay insdie for awhile.  I did have a quick stay at the hospital for 3 days in April because I did get an infection, but it was easily treatable.  I finally was able to stop taking all the antibiotics I was on in July and I was able to resume the public race.

       

      I would highly recommend exercise to anyone with this leukemia as long as you have the energy.  I started slowly cycling indoors 2 weeks after recieving chemo and I still cycle even now 6 days a week.

       

      I am in complete remission with my last BMB showing 0.01% hairy cells, and my latest blood smeared show no signs of hairy cells, and my energy as returned, but I did finally get diagnosed with hypothyroidism and I am currently taking medication for that.

       

      I wish you all well.

       

      Stell,

      If you are having trouble sleeping, I would highly recommend a natural magnesium supplement called NATURAL CALM.  It has really helped me be able to relax and just stop my brain from going so that I can sleep.  You can find it at most nutrition and vitamin stores.  Try it out because it really has been a wonderful thing for me, and it keeps me more calm throughout the day, especially in stressful situations.  Our society is mineral-depleted as it is and we don't get enough magnesium that our body needs.

  • Re: new to these discussion boards...
    stell Registered Users
    Currently Being Moderated

    Joe - I can't tell you how good it is to talk to someone who knows these things - are you a cancer educator somewhere? If not you should be b/c this is so helpful - I had no idea that more aggressive cells might gobble up chemo more - I have no idea how this works (having been in denial 1.5 years.) Thank you!  And thank you for the reassurance that sometimes the numbers do just drop.  I had two things happen, the hairy cells increased and the platelets dropped rapidly. wbc count was okay i think and liver function ok. my spleen is a little enlarged. I have no idea how much the hairy cells increased (via blood smear not bmb) the doctor just said "more". Is there a number for these? A count? I'd love to ask for it. After reading this board i asked for cellularity b/c everyone was talking about it and he said he couldn't remember b/c it was bmb 1.5 years ago.  so i'd love to ask for cell count in blood smear but don't know what it is called.   I don't understand why the splenectomy would help if it doesn't do anything to stop the hairy cells but the nurse said "we don't really know all the ways it interacts with the disease course and it might alter it."  ??   also I asked about platelet transfusion and she said it only lasts a week and that if you do it too much you can get an allergy? or reaction? Have you heard of this?  Thanks again - I'll go check out the link and please forgive the random capitalizing I only have a few minutes baby free.

     

     

  • Re: new to these discussion boards...
    stell Registered Users
    Currently Being Moderated

    Joe - can you help me interpret the article you sent me?

    it says complete response vs partial what does that mean and how does that correlate to time until next treatment? could someon with partial response last 10 years and someone with complete response last only 8 or does complete response mean it is gone?

     

    the side effects seemed MORE with pentostatin but he specifically told me there were less. although he might have said there were less long term like subsequent cancers.

     

    in the part where it talks about 9 year survival does that mean that only 50% of patients survived 9 years past treatment? or was that 9 years until next treatment but they were still alive?

     

    and what does it mean in the splenectomy section about 12 months? does that mean that is the usual amount of time that is "bought" by having a splenectomy before treatment?

     

    i appreciate it.

    -Stell

    • Re: new to these discussion boards...
      Wobbles Registered Users
      Currently Being Moderated

       

      Hi Stell,

       

      Here is a link to a Wikipedia article that answers some of your questions.  It’s good.


      http://en.wikipedia.org/wiki/Hairy_cell_leukemia

       

      I am not entirely sure how the doctors are defining “complete response” to treatment.  However, I do know that “complete response” means that you do not have to redo chemotherapy right away.  One of our posters, Joan, was recently treated with cladribine and only had a “partial response” to treatment. She needs to be retreated.  She is investigating her options right now.

       

      Regarding this quote from article,

       

      “Pentostatin given intravenously every other week for 3 to 6 months produces a 50% to 76% complete response rate and an 80% to 87% overall response rate.[11,12] Complete remissions are of substantial duration. In two trials with 9-year median follow-up, relapse-free survival ranged from 56% to 67%.”

       

      this means that 50 to 76% achieved complete response, about 30% achieved partial response and about 13 to 20% had no response to treatment.  Referring to the last line, there were two studies that followed patients over a long period of time.  Half the patients were followed for less than 9 years and half were followed for more than 9 years.  56 to 67% of the patients did not relapse.

       

      It would be better to see the graph of survival numbers versus time.  This would be easier for me to understand.  When I read these sorts of articles, I try to get the gist of what they are saying.  I think the author was trying to substantiate his claim that “complete remissions are of substantial duration.”  I gather that one can hope for 10 years remission.  But it is a statistical thing; some will be remission free longer than others.

       

      As I understand HCL, there are no proven cures at this point in time.  But there are effective ways to keep the disease in abeyance.  I think there will come a time when new drugs or combinations of drugs will be able to provide a complete cure.

       

      Regarding pentostatin having more side effects than cladribine, I agree with your comment that this seems to be indicated. However, I would trust your doctor on this.  This article is not meant to be the definitive comparison between these drugs.


       

      Both your doctor and nurse seem to be giving you good advice.  Your nurse is certainly right about the platelet transfusion being of limited time value if your BM is not producing enough on its own and about the allergic reaction possibilities.




      Joe

       

      PS No, I am not a cancer educator, but I am a retired teacher.  I used to teach physics in a university.  Thank you for the compliment.



  • Re: new to these discussion boards...
    FLCoyote Registered Users
    Currently Being Moderated

    Kim,

     

    I'm a 64 year old male and was diagnosed in Nov 2009.  I have five days of cladbrine followed by 17 days of Neuprogen shots.  The chemo was easy, the shots kicked my butt.  My chemo was from 16 to 20 Nov 2009 and so far I appear to be in complete remission.  All of my blood counts are up.  The only problem I have is chronic fatigue.  I wake up ready to lie back down and when progressing through the day keep thinking how nice it would be to just lie down for an hour or so.  This doesn't seem to be unusual for HCL and I'm just determined to get over it.  I'm working on diet and exercise and am open to the possibility that I might just be depressed, though I don't feel particularly sad or down.  Anyway hang in there and don't get discouraged.

     

    John

    • Re: new to these discussion boards...
      Wobbles Registered Users
      Currently Being Moderated

       

      Hi John, welcome to the HCL board!

       

      Like you, I have been battling fatigue and have been trying to track down why I suffer so much with this.  My hematologist thinks it might be related to some underlying autoimmune issue.  I am also anemic (range 8 to 9 g/dL), which must be contributing something to my fatigue.  My family doctor also wants me to fill out a questionnaire to assess me for depression.  However, again like you, I do not feel depressed.

       

      Joe



  • Re: new to these discussion boards...
    dbwalt Registered Users
    Currently Being Moderated

    Hi Kim,

    I am new to the discussion board also.I am a 49 year old female. I was first diagnosed with HCL in March of 2005. I was on 7 day pump of Cladribine. I was  very nauseous and weak, I was in remission 2 months later. I had a relapse in Nov. of 2008. I had the same therapy, but had a very bad headache this time. I was in remission again 2 months later. I will have my 2 years of remission next month.

    One of my worse issues was with the tape that held my PICC line both times I have had a reaction. I was wondering if anyone gave you any ideas for this. I actually had a scar from the tape.

    Thanks,

    dbwalt

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