Bryon Butler - 10/21/98 14:22:35
My Email:bbutler@valinet.com

Comments:
I am Bryon Butler, and had hcl earlier this year. I am now in full remission, and my family and I hope to leave for Colombia, South America for religious work in 1999. I had learned in a medical book that if hcl returns, it will probably do so within the first year of remission. Yet others on the site stated that they saw its return after a year and a half ( I am still going through the archives to get info.) Does anyone have any current info. on this issue? This will help in our planning. Also, since the remission I now have low blood pressure. Has anyone else acquired this? Thanks to all who have helped myself and my family with their input and stories. I discovered the site after the illness, and it has met so many needs. Thank you! Bryon

Gary Schwinn - 10/17/98 02:21:55
My URL:http://www.oocities.org/cgi-bin/geoplus_apps/ans_entry
My Email:gdjj@aol.com

Comments:
Hello, I am a 40 year old, very athletic,father of two. I am also a military member and have worked in the aviation industry for over 20 years. I have been exposed to many chemicals over the years, however mostly jet fuel. I have heard there may be some link b tween hydrocarbon fuel and certain types of luekemias but nothing positive. Discovered my problem by a feeling of fullness and hardness just below my lower left rib. No pain, just bloated feeling. Went to doc, had all the test and was originally diagnosed as non-hodgkins lymphoma. What a shocker!!! Then after many prayers and the final results of flow cytometry (bone Marrow) it was confirmed by second opinion that I had HCL. I will never forget the feeling when the doc explained there was a better than 90% chance of putting this little bugger in full remission. 2cda is now the drug of choice for most patients suffering from HCL. My doctor preferred to administer my chemo as an inpatient. Hooked up to first expen ive little bag on April 15th 1998 and released from hospital 8 days later. 24/7 is a pain in the neck, however side effects were nominal. No appetite loss for 1st three days. Kept myself well hydrated for the duration. Very important! On 4th and 5th days experience high fever 105.3 and rigors (trembling).Ice bags worked well. Kept busy by teaching other nurses about my condition. Many of my oncology nurses had never heard of HCL! Had drug by IV infusion. Doc asked if I wanted PIC line and I said no. Dont know if this was a good idea or not. Had about 50 needles in 8 days. Gets old quick! I had never been in a hospital for anything and quite honestly I was scared beyond belief. Had it not been for my 2 outstanding doctors, good nurses and loving christian family and friends I dont kno how I would have handled it emotionally. That was the toughest part for me as I have never been sick. The human body can withstand a lot but your emotions can beat you up terribly quick. They say half the battle with any cancer is the right frame of mind for the fight. I think that is a true statement. I prayed a lot, focused on my children and my responsibilities and kept myself busy. Even when my counts were down to nil I walked whenever I could. After I was released on the 8th day had a bout of phlebit s and cellulitis in my arms (most likely from an infection due to multiple IV sticks). This was the most painful part of the whole process. Was readmitted back to the hospital for IV antibiotics for popeye looking arms.Released after 3 days. It took almos 5 weeks for my arms to return to normal. Two months after the treatment my spleen had returned to almost normal size. (It was greatly enlarged)and counts are coming up slowly. I am a very impatient person so the waiting is tough. I was back to work in 2 onths and so far so good. It has now been 6 months since the treatment and I feel pretty good. I get tired easily but I push myself pretty hard everyday. I still suffer from "WHAT IFS" and I find myself worrying about my future. Its very hard not to. The est thing about this whole experience is the way it puts life in perspective. It is so precious and I have definately changed the way I view certain things in my life. A lot of priorities change. This has also been a very unique spiritual experience for m and I have definately witnessed some devine intervention. I know many readers out there are not believers, however I have had too many prayers answered this last year to simply be coincidences. God has blessed me with more time and when it comes right do n to it, thats whats really important. This is a really good site to converse with other HCL patients. I was surprised however to see how many people have had second treatments. Would like to hear from some of these people as that is my biggest fear. What to do the next time if needed? Better go for now. Will help anyone with questions. Feel free to E-Mail. I am in Baltimore Maryland. Good luck with your treatments and always remember Philippians 4:13

Lon Winston - 10/12/98 21:48:06
My URL:http://www.carbondale.com/trtc
My Email:lonw@rof.net

Comments:
One more story from a very healthy 52 year old: I live high up in the Colorado Rockies, about 30 minutes outside Aspen. I've been here for 23 years. I bike, hike, ski, climb, swim, you name it. I'm incredibly healthy. You know the story. Late august, we climb over West Maroon Creek (13000') to Crested Butte. I'm the last to the top. I can't breathe. This has never happened to me before. Labor Day weekend, I'm feeling like a slug. I go to the doctor. Blood test. H & H is 10.1 and 25.6. WB is 1.1. Off to the hospital for bone marrow biopsy. Fever of 102. They admit me. Two weeks in the hospital waiting. Scared to death. Every test for every desease known. No diagnosis. Biopsy is sent to the Mayo Clinic. More time goes by. Two transfusions. Red down to 8.8. Finally, my doctor comes in and says, "Good news Lon, it's Hairy Cell Leukemia." Well the rest is obvious to anyone who's heard that. Seems as though it was only in my marrow. No enlarged spleen, which threw them during early diagnosis. 2CdA. 7 days, around the clock. Stayed in the hospital. We live way up in the mountains and I didn't want to be that far away. I was released the day they pulled the iv. By the way, it was in my arm. No port. They didn't want to risk infection. That was Friday 10/2. Saturday night, I was readmitted with Neutrapenic fever. Taken off of antibiotic pills and put back on iv. I had an allergic reaction to the bactrum (septra). Rash all over. But no itching. Whew! Released Tues, 10/6. Outpatient for iv antibiotic. Put on nupragen (sp) therapy. Hormone to induce WBC. CBC daily since release. 8.8 - 23.8 H & H. WBC is a whopping .8, up fro .5. Platletts have dropped from 175 to 52 over the past 10 days. After a week of these shots, they were stopped today - 10 days off 2CdA. I don't go anywhere really. If I do I where my mask if anyone is around. During the pre-diagnosis period and chemo t eatment, I was off fresh veggies and fruit. But when I left the hospital I was told I could eat them again, just be super careful in the cleaning. All doctors have different opinions about all this. Funny thing! A hematology specialist from the Univ of Co orado Hospital in Denver is overseeing the treatment. Local Internal medicine doc is caretaking. So there you have it. I'm taking long walks. Buying my ski pass. Planning for the future. Being really positive. I have a great network of family and friends who are doctors around the country. All feel everything is being handled appropriately. All believe if you have to have a leukemia, hairy cell is the one to get and 2CdA is the treatment. I'll keep you posted.

Lyn Henriques - 10/11/98 20:38:15
My Email:lhenriques@sprint.ca

Comments:
This is an excellent and interesting website. I have learnt so much about leukemia from reading your stories. I have a friend with a 26 year old son, Adrian Hall who was diagnosed with leukemia. The Canadian Red Cross Society with be hosting a drive on October 28, 1998 in order to find a doner for bone marrow transplant. If you can help us get on the internet p ease let me know as soon as possible. The doctor says he must have the transplant within 6 weeks at the most. Please if you can help in any way it way it would be appreciated. Adrian has a wife and a 6 month old son - there is no bone marrow match in h s immediately family. Thanks a lot and may God Bless you all. Lyn.

Steve Fikar - 10/10/98 21:10:16
My Email:sfikar@aol.com

Comments:
Hi everybody, I have written my story several times since my diagnosis and 2-CdA treatment 7 months ago. I have recently been suffering from high blood pressure for the first time in my life. It is likely due in part to stress but I just wonder if HCL or chemo are factors too. Does anybody have a similar experience?

Patricia Montgomery - 10/09/98 05:07:17
My Email:jdmontg@att.net

Comments:
Well as promised here is my update from the second round of 2CDA. It went a lot better than the first time. After the 3rd day they hooked me up to a portable pak and let me finish the treatment at home. To make a long story short, all my counts are ok except for the WBC which went down of course. The pak was removed tod y, and hopefuly the second time around will get rid of these little hairies for good. I see the doctor Sat. to see if the WBC starts to raise again. Thanks to all of you that have written, and givin your support. Pat

mark taubensee - 10/06/98 00:54:14
My Email:this website author

Comments:
Please consider helping others with HCL by learning about and joining The HCL Support Group. Basically, when you're a member, you respond to letters sent to me or this site requesting information, advice or contact with oth rs about Hairy Cell Leukemia. Click the link for more info. Thanks

Susan - 10/04/98 13:34:54
My Email:susie@madriver.com

Comments:
I wrote my commnets on this website about 4 motnhs ago. I am a 26 year old woman who was diagnosed with HCL in June of 1997. I was treated at home with 2CDA and went into almost full remission. Since that time it was discovered that I also had a huge t ymus gland and had to have that removed in a rather major operation. It is not known whether or not the two are related and both my hematologist and cardio-thoracic surgeon at Northwestern in Chicago do not think they are related. My last bone marrow showed decreased WBC and platelet counts. I will probably be retreated with another round of 2CDA soon and then take it from there. I can only give the highest of praise to Northwestern and the doctor's, nurses and other professioanl who have treated me. I am lucky to be from Chicago and to have such an amazing resource in my hometown. I have been following people's comments on this website for some time and the same theme seems to keep coming up over and over - that really we are lucky to have HCL because it gives you the chance to completely look at life from a different perspective. Yes, it is a dangerous disease. But, for me it was surely a blessing in disguise. Priorities have changed, views on how to live have changed. I feel more active in my life and mentally aware of what I am doing and what is going on around me. I have to agree with the man who wrote recently on this page: don't change your long term plans, continue to plan for the future, work hard and enjoy the time you do have off from work when being treated.

Joop - 10/03/98 16:50:24
My Email:JOLIESMA@XS4ALL.NL

Comments:
Sorry,Here is Joop again,from the letter below.I forgot to write down my E-mailadress.Here it is: JOLIESMA@XS4ALL.NL

- 10/03/98 16:47:12

Comments:
Hi everybody Since I am new on this page I.d better introduce myself first. My name is Joop,living in Holland.I am a 40 year old man , married for 15 years and I have two children of 9 and 7 years old. I was diagnosed HCL for about 7 weeks ago. A disease I had never heard of before,I only knew the word "Leukemia". I’m glad this site is available , because of the rarity of the disease the internet seems to be the best way to get your information from. How it all started: Tuesday july 14, I woke up healthy (although I haven’t worked for about a year because of stress and overexhaustion) At around 10.00 AM I did several phonecalls which kept me in my chair for about 45 minutes.When I ended those calls I had some pain in my eck so I took an aspirin but the pain got worse so I called my doctor around 2.00 PM. I went to see him immediately.But he told me that he didn’t know what was wrong with me. Since the pain wasn’t unbearable I agreed to go home and wait and see how the pa n would develop that afternoon. My wife had left around noon to stay the night with her sister in Amsterdam(about 40 kilometers,(25 miles) from our home)So I was alone with the children. Around 8.30 PM the pain got worse so I called the doctor (not my own because he wasn’t on duty that evening) He just told me to pick up some medication:a painkiller and a muscle-relaxer)Because by that time I wasn’t able to drive anymore I called my best riend(a dentist) who lives only 200yards down the road , but I got his wife (a fysiotherapist)on the phone , So I asked her to pick up the medication. Which she did, but with her experience she saw that the pain had nothing to do with muscles.So she was worried,stayed with me for over an hour,but when I felt a little better I told her not to worry and go home again. Around 11.00PM my wife called to be informed about the pain in my neck.In a matter of seconds she told me she was coming home(later she told me that she hardly recognized my voice anymore). When she got home around midnight,my friend,alarmed by his wife, lso came to see how I was doing.They took me to the doctor again but this doctor also told that he didn’t know what was wrong with me.But because he couldn’t think of any disease in my neck that could be dangerous he sent me home again with some morphinep lls.So I went to bed, got asleep immediately. Next morning my wife couldn’t really wake me up.So she called our own doctor again, who left all his patients in his waitingroom and came to see me.He looked at me for a few seconds and immediately called the nearest hospital.While my wife was making call to find someone to take care of our children,the doctor put on my clothes and helped me into the car and my wife drove me to the hospital.By that time I wasn’t able to walk anymore so she carried me through the hospital in a wheelchair.Because I had gone into a state of shock,I started to vomit in the hall of the hospital. The rest of the story of that day has been told to me because I can’t recall much of that day.After 2 hours of examinations the doctor didn’t know what was wrong with me,so he sent me to the "Academic Hospital of Utrecht"(AZU) a)because he was going on ho iday next morning and b)because of their better expertise. Even there they didn’t know what was wrong with me so they asked the best doctors and a professor to examin me.During that examination they had to take me to the O.R. because my neck was swelling. So they had to put a tube in my throat to keep me alive an prevent me for suffocation.After the operation they took me to the Intensive Care unit.Where they kept me asleep for 10 days. In those days the infection caused that my neck grew bigger then my face.I had very high temperatures, antibiotica(Penicilin)was ’t doing its work and my blood counts were very bad.They found "streptococ bacteria"in my bloood (which normally can only be found in a mouth). And after a bone marrow biopsy they even found those bacteria in the bone marow.(which can be mortal)And after days an abscess was growing in my neck which could cause bloodpoisoning.So they operated me again to remove the abscess. And the tube in my throat was connected to a breathingmachine all the time. So I was in acute lifedanger for about 8 days.Than after 10 days they decided to wake me up again.I don’t remember anything anymore of those 10 days although I woke up several times during those 10 days.They only things I remember were: nightmares full of fear,fear and fear. Than the next few days they narcotisized me twice to take the tube out of my throat but both times I woke up with the tube still in my throat.The doctor said the swelling still too severe to take out the tube. At July 29 a haematologist told me I had HCL(the told me I had a well managable type of leukemia).And he told me I had to undergo chemotherapy.Until that moment I had not even considered that there had to be a cause for my situation.I thought that when th swelling was over,I was going home and that would be it.I didn’t panic at all because he told me it was curable. 3 days later the tube started to irritate in my throat,wich made me cough and blow out slime through the tube for over half an hour.The only way stop it, was to knock me out with valium(a relaxer) I had about 9 of those ‘attacks’ in two days. Because of that, and that I slowly started to realize that I had a malignant disease,I found the bottom of my mental abilitys;I couldn’t cope with my situation anymore. But two days later they narcotized me again and they took out the tube.(after 20 days; from which I have been concious for 10 days) I felt reborn and the next day I was taken to a normal hospitalbedroom because the incision of the abscess-operation had not yet healed (leukemia) After exactly 1 month I was sent home. That was very emotional;I’ve cried with my best friends and family.And most of all I found out that my wife had pulled me through all my problems and I couldn’t have managed without her:Her task was so much bigger th n mine;When I was asleep for 10 days she had to take care of the children and quide them through this new traumatic experience,she had to cope with the fact that I was in lifedanger.So there wasn’t a lot of room for her own emotions,but she could lift th world during those days. So it enriched our marriage in very many ways.And I hope that the patients who read this realize that by the time you get home from the hospital,feeling better,with an experience like mine;your wife still has her emotions to deal with. My haematologist decided that he will use ‘Pentostatine’ for chemotherapy instead of ‘2-CdA’.The difference is that ‘2-CdA’ usually will be given continuously during a week.And my chemotherapy with ‘pentostatine’ will take about 6 months,starting with on e a week,then once in 2 weeks and then once every weeks.He has chosen this therapy because he can’t be 100% sure that there are no bacteria left in my neck.So when my neck might swell again,he can stop chemotherapy at any time so that my bloodcounts can g up and fight the infection.(for as much as possible).He says during chemotherapy You can be cured from any common infection or disease.But I was lucky the first time with the infection in my neck,but he can’t guarantee the same result next time.So that’s why he has chosen "pentostatine"I’ve had 2 therapy’s now the 3rd one is delayed because of the low WBC ( 0,6) Alltogether I consider myself to be very lucky man;Because I can’t turn back the clock:Yes,I had a terrible time at the hospital,but that’s all over now and, Yes I do have Leukemia, But of all cancers HCL is one of the better managable diseases..So I’m lo king at the time ahead of me(and backwards only every once and awhile). Even the question "why me" is irrelevant to me,Healthy people should consider: "why not me". Just sit down for a half an hour at the entrance of the policinical department of a hospital and see how many people are passing through.So I (you) are not the on y one.And if I do survive at long terms;it enriched my life so much. So that is my very long story,but I’m glad I could finally tell my story to people who really know what’s going on. Please contact me if you have any comments to my story. (please,forgive me my mistakes in the English language) All the best to all of you p.s.The day after I finished this letter I was taken to the hospital because of high temperatures.So they give me Penicilin by infusion 4 times a day. The temperatures went back to normal the next day but my WBC went down to 0.3. And now after 1 week in the hospital they have gone up to 0.6.I Hope to be released from hospital by the end of next week.

Rob MacNichol - 10/02/98 21:19:09
My Email:rmacnichol@ivc.cc.ca.us

Comments:
I just read some more comments. If you feel good about seeing Dr. Saven?... do what feels good. I did. DR. Saven is the top researcher at Scripps, and has seen over 400 HCL patients. He will sit and answer any questions you have, and will not just ski over it. There are two Dr.s the other is Dr. Tetrous (I'm not sure of the spelling). I told him about this site, and he said he'd take a look at it ... I do not know if he has. My own thoughts on Dr. Saven were that if the Israelis sent their Army Chief of Staff to him, he must be good. Dr. Tetrous said they occsionally get Dr.'s in who have HCL! One, he said just left and went back to Florida, I beleive. Apparently, DR. Save _is_ top notch on the subject. What I suspect, and I do _not_ know is that many Dr.s read what to do, and treat their patients. My feeling is that DR. Saven is doing the research and putting out the info for Dr.s to read. He _Knows_ this disease. That's my thinking on that. It seem that I have read (on these pages) of people with only partial responses. One guy (it's in the archives--Robert Baron) had been battling this disease for 15 years before he finally got a 3rd or 4th treatment that stopped HCL cold in its tracks (for the f rst time since he'd contracted it). Hang in there. It's easier for some than others, but read around this site, and you'll see some have had one hell of a fight on their hands, and have made it through. See the story by (Robert Baron (on 11/19/97) bbar n@f22111.mar.1mco.com) Hope this helps. It did me before I'd taken the 2cda.

Rob MacNichol - 10/02/98 20:59:12
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Well I thought I'd drop a note and say "Hi." I'm doing fine. Actually, when I avoid the subject of HCL I seem quite normal. I saw Dr. Saven Sep 3, 98. He and his co-Dr. said my blood counts were all in the normal range. I did not bother to look at th m, I did not care to "know" what they were. Any more, I just carry on as I always have. I figure one day I'll need 2cda again, but who knows for sure. If I wait around for all that, time will pass me buy that could have been put to much better use! I'm doing as I always have except I must do it as a 50-year old, and not as a 25-year old. I had a great workout in the gym this morning ... I'm continuing on my Masters in History, and carrying on quite a bit on a VN 101 site with vets, Professors, and oung'uns who are taking a course on VN History. Someone asked about needing a "follow-up" bone marrow biopsy. DR. Saven says, "Naw! and Why?" He put it this way ... if you have HCL in the marrow-still, I would not treat you until you counts go down to (I think he said) 1,000 for WBC, or 10,000 for RB , or below 100 for Platelettes. Something like that. Once one of the three gets to that "cut-off" level, we do a bone marrow to see what's going on (I'm sure to make certain it's HCL causing the problem) and then treat you. No need to do a follow-up bi psy. I liked that just fine. I'm even beginning to forget what the counts are supposed to be. A little denial is a good thing. Been going to El Torito on Fridays ... good Magaritas there, and Italian food on Tuesdays ... great sausage there! Japanese during the week, and Persian food is the best around here. All you HCL'ers ... you're on the cutting edge of science. Dr. Tetrous(?) -- Dr. Saven's partner in HCL said throw out all the statistics on HCL before 1995. It's a whole new ball game. So, for me Starbucks in the morning, carpool with the wife, traffi be damned(!), and work, work, work. A busy mind, is a healthy one. Everybody keep your long term plans, enjoy your time off from work (you'll be back soon enough). Rob MacNichol

Patricia Montgomery - 10/01/98 03:49:28
My Email:jdmontg@att.net

Comments:
Tomorrow Oct 1st I start my second treatment of 2CDA. This will be done in the hospital. I will write another message at the end of the treatment letting you know how it went.

Mort - 10/01/98 01:09:24
My Email:jmascitti@aol.com

Comments:
Hi fellow HCL folks: I wrote earlier in April. I still have HCL and a white count in the range of 1,000. It looks like my Doc wants to retreat which is fine with me if it works better this round, but for some reason I've only had a partial response. D es anyone in HCL land know of someone that has had two treatments of 2CDA with in the first 6 months? What dangers and risks are asscoiated with a second treatment? Please let me know if you think you can help. Also for those that have seen Dr. Saven. Do you recommend I do so? I've have seen Dr Martin Tallman at Northwestern University. He is very good, yet puzzled by by my partial response.

Mark King - 09/19/98 15:28:02
My Email:markking@gridusa.net

Comments:
Greetings to everyone from North Carolina. Just an update on my recovery. Things are going great and I have decided to take the kids to Disney World in October. I will go back to the doctor on the 29th of Sept, and will be able to give my blood counts the . I will have a bone marrow test in a month or two. For those of you who are about to be treated with the 2cda please take note that the majority of patients across the country experience only minor side effects from this drug. 2cda is probably one of the mildest forms of chemotherapy in modern oncology. We all should consider ourselves lucky that we have this incredible drug. I will say that being treated in the hospital 3 years ago when I was at 98% hairy cell did give me the opportunity to see other can er patients being treated and to see what some of them were going through. When I was diagnosed in October of 95 a friend of mine was told that he had bone and lung cancer the same day that I was told about my hairy cell. His wife was 3 months pregnant wi h their 1st child and he was 33 years old just like me. He was given 3 to 6 months to live. His courage did something to me that forever changed my life. He knew he was going to die while I was given a 2nd chance at life. Jeff passed away at Christmas tim one year later after seeing his beautiful daughter come into this world. Whenever I get to feeling sorry for myself I think about Jeff and his family then I think about my own children and wife and realize that I'm the luckiest man on earth. I can beat t is disease and so can you. Mark




Rooster - 09/10/98 22:53:23
My Email:None at present

Comments:
Hi again, the Rooster lurking on this page again. Just had to get on line again to read up on some more of the readers stories. I noted Keith Vicknair's posting that talked about the terrible rash and itching he experienced. Sounds vaguely like some fo m of Shingles. I contacted Shingles two months after my nearly fatal bout of infections during my 2CDA treatment. Pneumonia during, then thrombosis following the 2CDA treatment, and then Shingles occurred. The rash started at the onset of Shingles, wit subsequent horrendous skin sensitivity and pain, then awful itching as the Shingles regressed. My complete story will eventually give a blow-by-blow description of the whole affair when I get the chance to put it online. As I read all of the stories about HCL I can't get over the many different ways that this disease is handled. My observation is that it is not taken as serious as it should be. It seems to be handled in a very casual way, in that several methods of trea ment protocols are followed. In many cases, even mine, the treatment was rather casual in that you are generally pretty free to do as you please during chemo. I too had the fanny pack and pump, and started to get very ill within a couple of days of init ation of treatment. Before we could figure out what was really happening we were pretty far down over the hill. My suggestion to anyone that is about to undergo treatment give very serious consideration to very close monitoring or even a hospital stay during treatment. I would certainly request hospitalization and much closer monitoring if I had to be treated agai . If not in the hospital, I would stay very close to home, limit activity, and keep in very close touch with the doctor if any hint of trouble occurred. I don't currently have an email address to respond to, but if anyone wishes to contact me they can leave a message on this website (if Mark T. doesn't mind) and I will try to respond. I will try to get on the computer at the library in Coupeville, Washin ton to keep in touch until I return to Santa Barbara, California. Best regards to everyone. Rooster

Daryl Rutherford aka Rooster - 09/10/98 01:18:24
My Email:none at present

Comments:
Mark, Rooster here at long last. Sorry not to have contacted you sooner but Fate has a strange way of dealing with you as we both know. I have been "stuck" in the Pacific Northwest since March since my Sister in law died of cancer. I made one major boo boo by not bringing my computer with me to Washington this Spring. I am frustrated with not having one with me. Am using my Daughter's machine to send this. Best thing about it all though is that I am still feeling fine after three years plus, following the HCL and all of the complications. At my last blood test the white count was about 5.1K. Whoopee! The 2CDA did the job! My sincere apologies for not having gotten my whole story on your site sooner. I think you have done a great job, and many thanks to all who have put there stories on the site. I am looking forward to getting back to Santa Barbara in a couple of months nd getting my story on your site. Stay tuned folks. Rooster

Steve Fikar - 09/05/98 16:40:12
My Email:sfikar@aol.com

Comments:

Comments:


Mark King - 08/30/98 16:57:49
My Email:markking@gridusa.net

Comments:
Hello everyone Mark King here On day 14 a full week after 2cda. Had PICC line installed on the morning of the 17th. Home health hooked me up that afternoon to the juice and I did not see them again until the 24th when they disconnected the 2cda. I never r n a fever and had only minor side affects. I worked some, went out to eat a couple of times, and took my kids fishing on Saturday afternoon. After the treatment my white counts were 1.1 and platelets rose to 124. On the 28th my white was 2.1 and platelets were 174 with hmg at 14. My doc has moved to Ohio so I saw a new one on Friday. We will hopefully take the PICC line out on Monday the 31st. My symptons now include; Muscle burn[ 10 to 15 seconds of burn after using a muscle that has been at rest] letharg [comes and go's] and itchy skin. I gained 8 lbs while being treated this time compared to losing 35 three years ago when my hairy cell count was 98%. As you can see, I never lost my appetite. In my opinion treating 25% vs. 98% is much easier because your stronger to begin with. MY SUGGESTIONS. Get a PICC line, its easier than getting stuck hundreds of times. Do it at home [If you can ] hospitals are not the best place to get rest. In closing I have some questions. 1. should I have a bone marrow test one and if so when? 2.If I showed a small % of hairy cells should I be retreated snd if so when? 3. If I'm retreated should I use another drug or alter the 2cda to once a week like some of you might have done. Gotta go, talk t you all soon Mark

Patricia Montgomery - 08/27/98 02:43:11
My Email:jdmontg@att.net

Comments:
I am a 54 year old female born and raised in the Ohio Vally area where power and chemical plants pulluted the area. I was diagnosed in Apr. 1994 with HCL and since my immune system was down to nothing, I was admitted to the hospital and treated with 2CDA day 24hr drip. I then spent another 2 weeks in the hospital trying to get my blood counts back up to normal. Then spent another month at home before going back to work. The tests prior to the treatment showed that my spleen was of normal size. In July of 1997, my red and white counts started to drop again. In Dec 1997 I was diagnosed with B12 deficiency and was put on monthly B12 injections along with folic acid. Red counts came back up. In June 1998 I had my annual Bone Marrow biopsy, and that revealed 7% HCL in the marrow, so in July 1998 a second bone marrow was taken to see if anything had changed, but still shows 7% HCL. As of Aug 15th 1998, my white cells are still dropping so after the doctor contacted Scripps, has decided to to do the 2C A 7 day 24hr drip again for the second time. This will be done Sept 21st 1998, unless something changes to warrent it being done sooner. I would like to hear from Mark King since he is about 1 month ahead of me on taking the 2CDA treatment for a second time. Just one question.. Has anyone ever had a pain from the spleen, or just an enlargment. Feel free to e-mail me with any comments. Patricia Montgomery

FULLER, Joye - 08/25/98 17:39:10
My Email:fullerj@bvsd.k12.co.us

Comments:
Thanks for responses from some of you--it has helped. Hope everyone is still healing and feeling more energy daily. My white count has been at .4 and now at .7 --anyone any suggestions to raise it--how long I need to be in isolation??? Thanks Joye

- 08/25/98 17:32:40

Comments:


John A - 08/18/98 18:59:40
My Email:johna_nj@hotmail.com

Comments:
Oh.... forgot to mention in my entry below: 36 yr. old male, computer programmer, no known exposure to chemicals/radiation in the past, clueless as to how I got HCL. Diagnosed after an extreme dizzy spell while hiking, anemia found, then HCL. Doc think I've had it for 3-4 years. Now on oral antibiotics, and had fever of ~101.2 last night (but I felt fine!!!), has fallen today to around 99.

John A - 08/18/98 18:49:44
My Email:johna_nj@hotmail.com

Comments:
Howdy, I'm new in these parts. Got out of the hospital yesterday after 7 days of 2-CDA drip. Regular IV, not a port or pik line - worked out ok. Took treatment as an in-patient because I live in very rural New Jersey, too far from the hospital. Good t ing - turns out I needed 2 units of blood on Thurs. due to low hemoglob. count. Felt fine most of the time except for two low points: First day, the barium contrast liquid for the spleen CAT scan made me boot (puke) pretty fiercly, and I lost a lot of s eam on Thurs. before I got the blood. Other than that and the occasional headache/nausea (which was treated w/medication), it went well... Glad to be home though, that's for sure!!! Going back to the doc this Thurs. for a CBC to check on the effect of he chemo. Right now, I feel 100% fine, but am taking usual precautions to avoid germs due to low white count (boy-in-bubble mode... Scrabble anyone? ;-) Will update after the Thursday appt. One curiosity... Doc said that a further marrow pull may not be neccesary if blood continues to look "hairless"... anyone else been told this?? Hang in there everyone! For those who have just been HCL diagnosed, don't despair - you'll beat this one.

Fuller, Joye - 08/17/98 16:47:09
My Email:fullerj@bvsd.k12.co.us

Comments:
Guess my mind isn't working since I left two incorrect e-mail addresses. I apolozize!!!! Just an update-got my infusion of 2 CDA on Friday Aug. 16 and have had no negative reaction as yet. Low energy but have the little camera bag type pack and continous drip. I have had no nausea and have learned to sleep with my "friend" fairly well by leeping on my side with my arm on a pillow. My temperature has remained normal. What to expect between now and Friday when it comes out??? What to expect for the next few weeks??? Thanks to all!!!!

Keith Vicknair - 08/16/98 11:47:21
My Email:kgvicknair@aol.com

Comments:
I'm a 46 year old male that was diagnosed with HCL in August of '96. I underwent 2-CDA for seven days. After the drug treatment I developed a rash that had a time table that was incredible. Being a school teacher I was warned not to expose myself to stu ents with any infectious diseases; colds, mumps, measles etc. That's like asking a bartender to stay away from drunks. I was backed to school one week when I noticed a rash, which consisted of a few red spots on my chest. Fearful of the measles I went t the doctor, then a dermatologist, and was told it was probably a reaction to the chemo. The rash became full blown around the shoulder area. Then it would proceed down my body at a rate of two inches a week. This continued for two months. The itching as incredible. Has anyone else experienced this? If so what was the treatment. Since my initial treatment my blood count has been normal. Next checkup will be in October. My prayers are with you all

Brian Coughlin - 08/13/98 12:49:45
My Email:paladin@innocent.com

Comments:
Hi, everyone! It's been about a month or so since I wrote an update here; at that time, I was just finishing my 7-day take-home pack of 2'-CdA. Here's what has happened in the meantime: I finished the chemo on Thursday, July 2, and had the PICC line removed from my arm (this was a mixed blessing, as it turns out). The next day, my temperature spiked to 101.1 F, so the doctor admitted me into the hospital--where I was to spend the next 6 days. The fever went away after 36-48 hours, and all the flu-like symptoms from the chemo left at the same time; none of the hospital cultures found any sign of infection (thank God!). At that point, it was just a matter of cajoling my doctor into letti g me go home (he wanted to keep me in the hospital until my white counts improved), which he did--under the condition that I get set up with I.V. antibiotics at home (which meant another PICC line... *sigh*). I started home health care, stayed on I.V. an ibiotics for a week (with no problems), took oral antibiotics for another week (with no problems), and then stopped medications altogether. All in all, I feel tremendously blessed that the course of treatment went so well. My lowest counts were: red: 3,550,000 (9 days after start of chemo) wht: 500 (11 days after start of chemo) plt: 39,000 (7 days after start of chemo) My current counts are: (49 days after starting chemo) red: 4,720,000 wht: 5000 plt: 109,000 I'm a math teacher, so I couldn't resist making a bar graph of all my CBC results (with different colors for each cell type). :) It was helpful to see the patterns; each type of cell responded differently. My red cells, which were 4,410,000 when I was iagnosed, never seemed to be very bothered by disease or chemo; they dipped twice--once after 5 days of chemo, once 15 days after chemo--and they've gone up ever since. My white cells, which were 3300 when I was diagnosed, dropped like a stone from the f rst day of chemo onward and bottomed out on day 11, but they've gone steadily up ever since. My platelets have been the most confusing; they were at 48,000 when I was diagnosed (one of the main "flags" in my diagnosis), dropped a bit lower to the nadir o day 7, shot back into the normal range (158,000) by day 18, but sank back down below normal (108,000) by day 34. I was rather nervous about that, since that was a good 20+ day decline! My doctor wasn't very worried, since my white counts were improving so steadily; he attributed the secondary "platelet dip" to bone marrow suppression (i.e. marrow cells sorting themselves out and deciding which cells to develop into first). Overall, I feel great... and I'm about to start teaching again (high school math) in about 2 weeks. With the exception of having Leukemia, I'm the healthiest I've ever been! Weird! One side note: some of you may remember that I'd written about having 32+ food allergies (and was pondering a possible connection between my HCL and those allergies, since HCL is a B-lymphocyte disorder--the very cell type that's in charge of remembering hich antibodies to produce!). The jury's still out on any possible connection, but there's an added twist: since the chemo devastated my white cell population, it's very likely that some of the "memory cells" (lymphocytes whose job it is to keep track of all "invaders" or anything attack-worthy) may have been destroyed as well. This introduces the *possibility* that some of my allergies may have, by sheer happenstance, disappeared! I'll let you know what happens. Best of luck to all of you in your coping, your treatments, your recovery, and your home lives! God bless! -Brian C.

Debbie Mulcahy - 08/12/98 22:57:02
My Email:debbie.mulcahy@cibavision.novartis.com

Comments:
My father was diagnosed with HCL on April 25, 1998. After 7 very long days of 2-Cda and another 10-15 days in the hospital fighting a very irradicate temperature, he was able to go home. His WBC is back in the "normal" range (~7.0) and the last bone mar ow sample looked to be clean. (Very good news). However, he is now fighting subcutaneous abcesses (he has had greater than 125 removed from his body over 2 months time), from whatever infection he had in the first place. (Temps of 103 and higher sent hi to the emergency room to then discover the HCL.) Has anyone else heard of this as a possible side effect from the chemo, or any other drug associated with HCL???? By the way, this web site was very valuable to my father and all of my family, THANKS!!

Fuller, Joye - 08/12/98 16:12:47
My Email:fullerj@bvsd.k12.co.us

Comments:
Just realized I entered the incorrect e-mail for any return mail. This is the CORRECTED address.

Fuller, Joye - 08/11/98 21:36:21
My Email:fullerj@bvsd.co.us

Comments:
Have tried to e-mail several people who had comments on this page--had mail returned-unknown-don't know why but couldn't send to gazel, RMAN-Shirley, and Nancy wratkins. Hope some of you will respond soon. I am 60 years old, teacher and was originally di gnosed as having aplastic anemia--this page has certainly given me encouragement and hope. Thanks to all of you and as I proceed I will gladly share my information and results for others. I am so thankful for the net and the ability to communicate with thers. My dr. had never seen a case of HCL - I did go to Bethesda to get a 2nd. opinion-they diagnosed the HCL rather than aplastic anemia.

Fuller, Joye - 08/11/98 19:44:06
My Email:fullerj@bvsd.co.us

Comments:
I have just been diagnosed with HCL and thank you for all the information located here. I begin the 2-cda Thursday Aug. 13 and hope to begin work as a teacher on Aug. 24. Any words of wisdom for my time during treatment and recovery are appreciated. I will continue to be in touch. I am drinking Pau d' Arco tea and my red, white and platlets have come up--any information on this tea?????

- 08/10/98 02:58:37
My Email:arhoehn@mci2000.com

Comments:
I read both your HCL story and the San Juan canoe trip. The canoe trip was purely enjoyable; the HCL experience was both insightful and enlightening. You see, in March 1996 my sister was diagnosed not with HCL but chronic myeloginous leukemia (CML) and nderwent a bone marrow transplant in May 1996. I was her BMT donor. I often wondered what she thought and felt during her treatment and recovery. Your journal gave some insight into that. I am happy to report that she has completely recovered and was ancer-free at her 2-year "birthday" in May this year. The canoe trip also piqued my interest because my family and I just returned from canoeing in the Adirondacks and Maine. We haven't begun canoe camping or tripping yet (in the near future), but I enjoy the stories. My father led canoe trips every year t Algonquin Provincial Park in Canada, and he always returned with wonderful stories. While the San Juan River is vastly different from Algonquin, Adirondacks, and Maine, the experience in the wilderness is similar. Thanks for a great read.

Dean R. Gee - 08/10/98 02:17:47
My Email:GMan56@Worldnet.ATT.net

Comments:
I am a 55 year old male who was diagnoised with HCL on 23 Dec 97. I started 2CdA chemotherapy on 13 Jan 98, finishing on 20 Jan 98. Received daily shots of Neupogen and Procrit to get the bone marrow producing red and white cells again, until 06 Feb 98. Have had regular blood tests since then, all negative for HCL. I have received good information and support from the Leukemia Society of America.

Josip Lecnik - 08/08/98 01:09:45
My Email:lecnik@central.MTS.Net

Comments:
Last month I was diagnosed with HCL, but I don't want to go through chemotherapy. I was diagnosed early, so the conditions aren't too severe. The main problem is that I have very little energy. I am trying various methods of "killing cancer with nutrit on", including drinking Jason Winters Tea, Green Stuff, and plenty of beet and carrot juice. If anyone has more information or has had past experiences with a nutritional approach to getting cured, I would appreciate it if you would respond. Thank you.< r>
From: Maria Teresa Colombo

To: Mark Taubensee Subject: Re: HCL Date: Thursday, July 09, 1998 11:35 PM Si cari amici voglio raccontarvi anch'io la mia storia e spero che qualcuno di voi conosca l'italiano così potremo corrispondere personalmente. Sono una donna di 52 anni, sposata con 5 figli ormai grandi, insegno lettere in una scuola media. Vivo in Calabria, la regione più meridionale dell'Italia. Fino all'età di 40 anni la mia vita è trascorsa senza particolari problemi di salute. Nel 1986 sono comparsi i primi sintomi della malattia. A dicembre mi sono presa uno dei soliti raffreddori, febbre tosse ecc , ma nonostante gli antibiotici sempre più forti la febbre non tendeva a scomparire. Primi esami : 3000 globuli bianchi, 40000 piastrine. Scatta l'allarme e mi sottopongo a visita ematologica. Si scopre che la febbre è causata dal citomegalovirus. Dopo un mese la febbre scompare, ma i valori continuano a restare bassi e per quanto riguarda la causa, nonostante nel frattempo mi sia sottoposta a tre agoaspirati (punctio sicca), si continua a brancolare nel buio. La mia milza è ingrossata e il dottore mi consiglia di toglierla per fare una diagnosi. Non accetto e cambio dottore. Mi ricovero presso l'ospedale Sant'Orsola di Bologna e qui dopo una biopsia mi viene fatta la diagnosi: hairy cell leukemia. "Una tigre di carta" la definisce subito il mio dottore, ma io penso lo faccia per consolarmi. Il mio HCI è di 0,292. Seguo una terapia con Interferon 3.000.000 tutti i giorni per 3 mesi sotto cute e poi per altri 6 mesi a giorni alterni. L'HCI scende a 0,04. Va tutto bene sino al 1993. L'HCI e risalito a 0,12 e quindi il dottore decide di sottopormi alla nuova terapia con 2-clorodesossiadenosina (CDA) infusione di 4 ore per 5 giorni. Il post terapia è stato abbastanza problematico, ho avuto febbre alta e chiazze su tutto il corpo per parecchi giorni. I risultati sono stati comunque ottimi, l' HCI è sceso di nuovo a 0,0025 ed io sono stata abbastanza bene. Sono andata per l'ultimo controllo a giugno , il dottore ha fatto solo l'agoaspirato, ma penso abbia notato qualcosa perché mi ha detto che l'anno prossimo mi farà la biopsia per valutare l'HCI. Cari amici potete mettermi al corrente delle nuove terapie? Ho saputo che anche la CDA è stata messa da parte. Cosa mi aspetta questa volta? Effettivamente sinora la malattia si è rivelata una tigre di carta. Non ci resta che ringraziare la ricerca! Fatevi sentire. Un abbraccio a tutti Maria Teresa Colombo mail to colombot@medianet1.it

This is the English translation:

Dear friends, I'd like to tell you my story. If anyone out there speaks Italian, please contact me so that we can correspond directly. I'm a 52-year-old woman, married, with five grown children. I teach italian literature and grammar at a middle school. I live in Calabria, the southernmost region of Italy. Up until the age of 40 I had no particular health problems. In 1986 the first signs of the illness appeared. In December I had a typical cold--fever, cough, etc. But I kept taking stronger antibiotics against the fever and it wouldn't go away. The first test results: white cells 3,000, platelets 40,000. That set off the alarms, so I decided to see a hematologist. It was discovered that the fever was caused by a cytomegalovirus. After a month the fever went away, but my counts remained low for some reason even though in the meantime I'd had three bone marrow extractions. We were still just taking shots in the dark about what the problem was. My spleen was enlarged and my doctor advised me to have it removed in order to help with the diagnosis. I refused and changed doctors. I checked into Sant'Orsola Hospital in Bologna and after a biopsy I received the diagnosis: HCL. "A paper tiger," my doctor said, but I was thinking he said that just to console me. My (HCI) was 0.292. I took Interferon under the skin (3,000,000?) every day for three months and every other day for another six months. My (HCI) went down to 0.04. Everything was fine until 1993. My (HCI) went up again, to 0.12, and so the doctor decided to put me on a new therapy with 2-clorodesossiadinosina (CDA) infusions four hours a day for five days. The post-therapy was fairly problematic; I had high fevers and a rash all over my body a good deal fo the time. The results have been excellent, however. The (HCI) has gone down to 0.0025 and I have been quite well. I went back for the last checkup in June and the doctor only did the marrow aspiration, but I think he may have noticed something, because he told me that next year he'll do a biopsy to measure the (HCI). Dear friends, can you tell me about your therapies? I've heard that CDA has been replaced. What awaits me next time? Really, up to now, the disease has been a paper tiger. We can't do anything but thank the researchers. Let me hear from you. An embrace to everyone, Maria Teresa

lsatt - 07/28/98 01:22:52

Comments:
I too would liketo know what could have given me this crazy thing !! I'm a cosmetologist and live in a rural farming community. I am 47 years old and was diagnosed in 1996. I have had one round of chemo. I an not in remission but it isn't doing enough estruction to need more at this time. I feel very blessed to be alive ( I was at first diagnosed with refractory anemia and was not expected to live long at all). I was told that it is something older men usually get but I am neither male or old (well, o me 47 isn't old). Any ideas out there what causes it?

Mark King - 07/27/98 21:02:11
My Email:markking@gridusa.net

Comments:
Hi everyone. It's Mark King again. I just got back from my docs office and my counts have slipped some. HBLG is 15 white is 2.7 and platelets are 87. I scheduled an appointment to have the pic line "installed" on Aug. 17. I will start 2CDA at 10:00 AM. Th plan is to do this thing at home this time. Thats good since I spent 2 weeks in the hospital last time. I'm going on a cruise Saturday the 1st, throwing a big pool party on the 15th and hope I can find the time to deal with these hairy cells after that. 'll be hanging out at home for a while so feel free to e-mail me anytime. Mark

Steve Martin - 07/25/98 17:04:41
My Email:smart@clara.net

Comments:
My father has just been diagnosed with HCL. This site has been a godsend for me as a means of information. Thankyou very much. Please feel free to forward any information on HCL to my mother who is having a hard time at the moment.Thanks Mrs A.Kane 24 Earls Way Hallwood Park Runcorn Cheshire England WA7 2WZ

Mike W. - 07/23/98 03:49:03
My Email:centerfield9@yahoo.com

Comments:
Just the facts please. Just the facts....and here they are. • 53 yr. old police lieutenant. Hired in 1970. • 2 CDA treatment in Aug. 1991 at the Green Cancer Center Scripps Clinic in LaJolla, CA. • Remission 6 months-1 year later • Prior to diagnosis work d the graveyard shift, 10 hour 4 day a week shift as a patrol commander • Post chemotherapy and recuperation time went back as Lt. of the detective bureau and worked a 10 hour 4 day work schedule during the day shift • August 1996 new assignment. The shif work as patrol commander included 1 year of swing shift and 5 months on graveyard (Feb, June) • June 1998 new bone marrow biopsy showed less than 1% of hairy cells, but blood tests over the last 2 years indicated a continuous decline in key areas. • July 9-16 2 CDA chemotherapy treatment given again in Long Beach, CA. • Currently being given Neupogen injections. Those are the facts and here are the questions: 1) Does anyone have personal knowledge of or information that could possibly connect working nig ts or irregular shifts and its effect on a person with hairy cell leukemia? 2) Have you or anyone you might know filed a workman's compensation claim where you could recommend an experienced attorney? I would appreciate hearing from you. My thoughts and p ayers continue to be with you fellow cancer survivors. You are my heroes. Mike W.

mark - 07/18/98 01:13:21
My Email:the author

Comments:
I had to archive some of the comments because the page was too large. Those comments can be found here inVolume 1and Volume 2

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