Comments:
Ivanhoe Medical Breakthru is reporting on a Supplement called Propax. See Propax.com, It is suspposed to help about fifty percent of those taking chemo and during their recovery phase for fatigue and to provide energy. It is a combination of vitamins, amino acids etc. and are dispensed by prescription thru your doctor.
David Hallgarth - 11/27/99 13:47:37
My Email:dhallgar@hotmail.com
Comments:
http://clinicalstudies.info.nih.gov/detail/A_99-C-0014.html This site contains information about the BL-22, Recombinant immunotoxins clinical trial. Protocol # 99-C-0014, Patient Recruitment
1-800-411-1222, email prpl@mail.cc.nih.gov if interested, the site was updated 11-27-99, today in fact. Unfortunately you may encounter administrative beaurocrats or that was my experience, be kind but persistent and your doctors help is a must.
- 11/25/99 19:43:10
Comments:
jeannie - 11/25/99 00:24:36
Comments:
Hi,
looks like my "secondary cancer" was actually "endometriosis," so all is well with me again. Thank you for all your letters and support. jeannie
David Hallgarth - 11/24/99 23:45:29
My Email:dhallgar@hotmail.com
Comments:
Great news for the 25% of us who are or become resistant to 2CDA in controling HCL. The latest issue of Blood contains this story: Recombinant immunotoxins (small bioengineered antibodies linked to a toxin and used to deliver poisons to tumor cells) wer
used to treat four patients with HCL who did not respond to 2cda, one went into complete remission after one treatment, the other three had a reduction of 99.8% tumor load.
NCI says recombinant immunotoxins are the most important breakthru in treating cancer in the last two decades, however folks develope immunity to it, however in the small HCL trial immunity to immunotoxins was overcome. This article did not specically add
ess HCL variances, it did seem to
imply that it would work on them. Great news for Don and Joe I am hoping.
lsatt - 11/23/99 02:47:02
My Email:l_satterlee@hotmail.com
Comments:
Have you folks got a letter from the hairy cell leukemia foundations yet about it's fund raising for a new study that Northwestern is trying to fund? It sounds exciting & I, for one, am going to try to raise some money to donate. I guess we put money in
retirement funds so instead I will put mine in research such as this so that maybe I will actually GET to retire someday.If you need any info and aren't in touch with them just get ahold of me and I will tell you what I know (or maybe a little of it anywa
)
Bob Kaplan - 11/15/99 18:32:23
My Email:rkap25@aol.com
Comments:
Well, here I am after 3 months of 2-cda treatment. My white count is holding steady at 2.7, a little low, but certainly better than before the treatment (1.7-1.9). All other counts are normal and my doctor (Dr. Wisch) feels to just hold the course. I feel
great, better than I have in awhile. I asked him about vitamins or nutrients, and he said there is no firm procedure, but to eat normal and if I'm already taking a vitamin, continue to do so.
I'm wondering if anyone has seen positive results from any specific vitamin, i.e. "C" or Magnesium, etc.
jeannie white - 11/14/99 14:36:52
My Email:patagonia_2@yahoo.com
Comments:
SECONDARY CANCER (update) My doc is still a bit stumped...can't seem to find the origin of this secondary cancer. I'm having surgery this tues to remove the small tumor in my abdomen. Maybe then they'll get some answers to all of this. Or maybe I am just
nother *rare* case and the origin of this cancer is right here in this little tumor. I don't know. A bit anxious and just want to get it over with. thanks for your support. jeannie
Dave Thomas - 11/12/99 17:10:16
My Email:dthomas.qw@netscape.net
Comments:
Before I begin my story, I would like to ackmnowledge this site for the information it contained at the time I needed it earlier bthis year. The stories of tohers helped me to know what to expect with my own diagnosis.
My story goes like this. I was 54 years old last year when my company announced that the division I was in was going to be closed. Anticipating either retirement or at least a career change, I went for a physical which was the first in too many years.
verything was fine except my doctor thought the lab doing the blood work must have screwed up as all my counts were borderline. He wanted me to come in for another test after the upcoming holidays.
Well, with everything else going on in my life at the time, new job interviews, extra work requirements as we were closing the division, the holidays etc., I forgot aboput the test. In early March my wife grew concerned of bad coloration in my skin ton
and I had become winded a few times while exerting myself. She made the appointment for me and I went in on March 8 for a blood test.
At noon the next day I got a call at my office to get to the hospital for immediate admission. The main sympton was pancytopenia and my blood counts that day upon entering the hospital were White cells-.7, Hemoglobin- 3.2 and platelets 7,000. I was pla
ed in isolation and later that evening recieved 4 units of whole blood to stabilize things until we knew what was wrong. Bone marrow biopsies the next two days along with a lot of other tests was how I passed the time. Scared out of my wits also as some o
the possible candidates for the cause of my problems were discussed. HCL was on the list and fortunately this web page and other sources of info told me to actually hope for the HCL diagnosis. On March 12 that was the case.
I had a Groshung catheter put into my chest on the 12th (following 6 units of platelets) and began receiving 2-CDA treatment on the 13th of March. I only had six of the seven days as I began to go septic, probably because my counts had been so low to be
in with. I developed a fevor about mid-way through chemo and some loss of appetite(although I cannot be sure whether that was the chemo or just my growing distaste for hospital food.
TBlood transfusions continued eveery few days when hemoglobin counts fell below 8 or platelets fell below about 10,000.
I remained in isolation for 27 days until we began to see some improvement in blood count levels following the 2-CDA treatment. All during this month of hospital traetment, my white cells remained below 1.0, hemoglobin ran from 8 to 10 depending on whe
I had the last transfusiuon and plateletes bounced around 7000 to 10,000.
I was released from the hospital on Easter Sunday and continued my mending at home. I visited the doctor every day for the first couple of weeks. I was administered Procrit to help the red cells and Neupogin for white cells.
Slowly but steadily I grew stronger and my counts improved. I now see my oncologist every couple of months and while counts are on the low end of normal, they are in the normal range. I have resumed full time work for a new company and am feeling great
I hope that the worst of my experience is over but I realize that a reoccurence is always a possibility. I have learned more about what is important in life through this experience. Health, family, friends and life in general. I enjoy each day as much as
I can--every day.
I will provide periodic updates to this note which has taken me six months to finally get around to writing. I wish the very best to anyone else who has been diagnosed with HCL.
Rob MacNichol - 11/11/99 23:59:08
My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hi Lsatt,
Congradulations on your wbc's going up. I notice you haven't mentioned you other counts. Are they going up/down? Also I wonder why you haven't mentioned this to your Dr.? Finally, could you're wbc's rising be attributed to something coincidental tha
neither you nor your Dr. have noticed. Waddya think?
Rusty Pedersen - 11/11/99 17:15:21
My Email:arrowhd@cpinternet.com
Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments: Comments:
Hi!
I lost this site and Mark sent me the URL-It's good to read the new comments. As I "talked" in April 99? I had HCL in 92 and the 2CDA treatment. Well, it came back in Nov of 99 and I had the 2CDA again and am back in remission. I told my doc NO MORE bo
e marrow biopsies (I've had 14 of them)!! Funny thing-he never argued with me!!! My counts are normal but definitely in the LOW! side of normal. I get my blood checked every 6 months. I'm taking vitamins, E, Calcium, aspirin,(I'm not the world's greatest
eater( I love pizza too much!!) But it's so true as many of you have said--go out and enjoy life!! I just turned 51 and have taken up English horseback riding (in Duluth, MN) and kayaking!!! plus my daughter got me into rollerblading!! This winter I'm go
ng to try skijoring (I already do crosscountry skiing)!
People think I'm crazy or so adventurous-- I say YES-S-S to both!! We never know what's going to kill us so live it up til ya drop!! The bills will always be there!! I don't have a lot of money
but I manage to still do these things--It's called priorities and mine are finally in order!! If anyone gets to Duluth please give me a call(218-525-6562). I plan on visiting my son in Jackson HOle, WY this coming year, anyone out there?? It's great gett
ng the info from Scripps!!
Keep on writing your comments--they are so fascinating AND encouraging!! My new saying is--"Life is like pizza: even when it's bad, it's GOOD!"
Rusty
lsatt - 11/11/99 00:02:43
My Email:l_satterlee
Hi! lsatt here again. I've been too busy to write lately but I wrote before about taking Essiac. Well, my white count went from 2.7 to 4.5 in 6 weeks of taking the tea. My energy level is so great that everyone around me wants whatever it is I have!! I
m not looking chemo in the face again right now but I also didn"t tell my doc what caused the sudden upward jolt of white cells. Somethings are better left unssaid until they ask. Hope everyone else that has written in this diary can feel as great as I
do!!!!
lsatt - 11/11/99 00:02:33
My Email:l_satterlee
Hi! lsatt here again. I've been too busy to write lately but I wrote before about taking Essiac. Well, my white count went from 2.7 to 4.5 in 6 weeks of taking the tea. My energy level is so great that everyone around me wants whatever it is I have!! I
m not looking chemo in the face again right now but I also didn"t tell my doc what caused the sudden upward jolt of white cells. Somethings are better left unssaid until they ask. Hope everyone else that has written in this diary can feel as great as I
do!!!!
lsatt - 11/11/99 00:02:23
My Email:l_satterlee
Hi! lsatt here again. I've been too busy to write lately but I wrote before about taking Essiac. Well, my white count went from 2.7 to 4.5 in 6 weeks of taking the tea. My energy level is so great that everyone around me wants whatever it is I have!! I
m not looking chemo in the face again right now but I also didn"t tell my doc what caused the sudden upward jolt of white cells. Somethings are better left unssaid until they ask. Hope everyone else that has written in this diary can feel as great as I
do!!!!
Rob MacNichol - 11/09/99 18:18:39
My Email:macnichol@ivc.cc.ca.us
The best thing you can do for nutrition is eat good food. My doc says take a one-a-day, "e" & "c."
I had a chuckle a month ago on CNN ... it was said that massive doses of "C" can make cancer tumors more resistant to chemo? Reminds me of "A" that is said, by researchers, to enhance the spread of lung cancer in patients who have that disease.
d hallgarth - 11/09/99 16:15:12
My Email:dhallgar@hotmailcom
Essiac can be purchased at Health Food Stores, animal studies and human studies done in Canada
resulted in no improvement. Expensive and listed in the quack area. Canadian doctor say buyer beware!
- 11/08/99 18:17:45
http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1......You might try posting this at the above site. My current Dr. (Saven at Scripps notes that there is a high incidents of HCL among Ashkinasim (Jews outside
the Middle East). I've seen/heard no other reference to this.
joe cancemi, jr - 11/08/99 15:45:58
My Email:jcjr@webcombo.net
I have heard but not read much on hcl being a disease associated often with a mediterrainian blood line. My paternal grandfather and grandmother were from Sicily and Southern Italy. Have any genetic studies supported the mediterranian connection? Joe C G
eensboro NC
jeannie - 11/05/99 20:46:12
My Email:jw4@ix.netcom.com
hi rob,
just got my blood work report and everything is clean! So who knows what the heck is going on. Still waiting for the CT scan report. Might know something by monday. thanks for listening, jeannie
jeannie white - 11/05/99 05:35:32
My Email:jw4@ix.netcom.com
hi rob,
had all my tests done this week...hope to *at the very least* get some results back from all the blood work done (they did a complete chemistry panel). I'm just trying to stay sane. Went to my spinning class this evening...hard to believe I could actually
be sick given that I can ride a bike (non-stop) for an hour! I'll keep you posted. Jeannie
Rob MacNichol - 11/03/99 17:18:08
My Email:rmacnichol@ivc.cc.ca.us
IDEC
http://www.idecpharm.com/
Retuxan
http://www.idecpharm.com/product/pr_rit.html
( BW)(GENENTECH/IDEC)(IDPH) Rituxan Follow-Up Data Shows 28 Percent of Responders Still in Remission; Some Up to Three Years After Treatment; More than 12,000 U.S. Patients Treated in First Year
http://www.businesswire.com/webbox/bw.120898/930393.htm
Genentech
http://www.gene.com/
Retuxan/Retuximab
http://www.rituxan.com/
Questions & Answers
http://www.rituxan.com/patient_education/index.html
I tried posting this on the newer HCL site but it interprets the url as spam and refuses to let the post "get posted."
Linda Apap - 11/03/99 14:32:32
My Email:mottz1025@aol.com
My husbands Dr. said the same to us, that HCL is a border line lymphoma. He said even that it is called a leukemia they consider it a low grade lymphoma. I guess it because how slow it developes. My husband first started with a small mass in the chest(1
m) that we will wait for the next cat scan to see if its gone. But he has HCL and the Dr. thinks it will be gone now that the 2cda is over. A cat scan and bone marrow will tell us soon.
Rob MacNichol - 11/03/99 02:29:40
My Email:rmacnichol@ivc.cc.ca.us
Hi. Sure! Dr. Saven of the Scripps Clinic says HCL is a low grade limphoma. He even refers to it as a non-Hodgekins limphoma. I don't recall, but I think HCL sort of off on it's own, but really, according to Saven it is what I have put down. I've pos
ed around this site and on the newer site Mark incourages us to us. Saven is the head of research, head of the Oncology dept. and recently head of the Greene hospital, or some such title. I forget that stuff and tend to concentrate on my own situation.
I was going to enclude the url site for him and SCripps but they seem to be either down or dated. If I come across them I will forward them to you. If you read the archives you will find my input on this subject extensive if a little sloppy (try Volume 4
& 5 for info on Scripps and those involved there...).
Mary Anne Rouse - 11/03/99 01:23:41
My Email:Rrousefam@AOL.com
To Rob McNichol: I'm interested that you stated that HCL is a low grade lymphoma. Can you expand on that? What was the source of that information?
I'd never heard that before, and would like to know where you learned of that. I'm sure others would, too. Thank you--to your good health! Mary Anne Rouse--anyone else care to comment?
Rob MacNichol - 11/02/99 17:29:25
My Email:rmacnichol@ivc.cc.ca.us
Hi Jeannie, glad I could be of help. Your case has kept me concerned for a few days. Of course everyone shys away from thinking about secondary problems with HCL, but the fact is we got it, and so it's something one deals with. The upside of this who
e affair, of course is the Dr.s and the patient tend to be in tune with possible problems and detect and treat them before it's later in the game. Feeling well and being sick, as we all have learned, can go hand-in-hand! People who don't yet know they h
ve problems haven't learned to get checkups, and they walk around with their heads in the sand (so to speak) and wow!.. before they know it, the thing's progressed out of control. I wish you all the best and please feel free to correspond. I'm coming du
for re-treatment. Probably in the nest 3-6 months??? I was treated in Feb of 98, and it looks to be about feb 2000 quite possibly. This time I will go into a study (phase II) that will employ the use of Monoclonal antibodies using retuximab made by Gen
ntech and IDEK. The test will be at Scripps Clinic. This stuff is supposed to kill only the cancer cells not the healthy bone marrow. We'll see. Take care. Rob. OH! You may want to post at http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160
1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1. We are gravitating over to that site and in my post to Don Knox I have encluded site concerning the Monoclonal Antibody drug about to be tested.....
jeannie - 11/02/99 15:01:29
My Email:jw4@ix.netcom.com
hi rob,
*thank you* for your comments. I should know something by the end of this week or early next week. Lot's of tests being done this week. My original dx of HCL was "A-Typical" The doc's had a very difficult time diagnosing me with HCL. So I'm wondering if t
is isn't the same thing as well. Although my doc said there wasn't any HCL in the aspiration done of that bulge. I'll keep you posted. take care, jeannie
PS> Thank you, Bob, for this info!
Rob macNichol - 11/01/99 20:25:59
My Email:rmacnichol@ivc.cc.ca.us
Hi Jeannie,
My Dr. told me that there is always a slightly higher risk of secondary cancers when ever one gets any type of cancer.
Another Dr. (oncologist) said he thinks the HCL is the cause of secondary cancers vs the chemo (concerning people with HCL). But know one seems to really know.
If you look into the archives you will find that another person, or maybe two had a run in with another cancer ... one was a melinoma behind the ear.
I'm interested in what you find out about this, and what will be the treatment. It could even be pure coincidence. Please keep us informed. If you feel like it please let us know the treatment, and options, what the Dr. says about all this.
Oh! Incidently HCL is a low grade limphoma. That's what it really is, so perhaps the two are related, if you've been told the lump is a low grade limphoma also....
By the way we are on another site Mark has developed at:
http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1
Just copy and paste it up on the location bar, and hit return.
And you hang in there.
Rob
jeannie white - 10/30/99 02:38:39
My Email:jw4@ix.netcom.com
Hello,
I was diagnosed with HCL in 1986, I was 26 at that time. Since then I've had 2 relapses. One at 5 years post splenectomy, the other 4 years ago. Both times I recieved chemo...the first
time: Pentostatin, the second time: 2-cda.
Recently I noticed a lump in my abdomen, near my belly botton. After numerous tests, it has been diagnosed as a "a small blue cell tumor" that is "poorly differentiated carcinoma. Basically, I have a secondary cancer (need to have more tests done for a de
initive diagnosis) My doc said it may be a low grade lymphoma. He is not sure.
More tests need to be completed. There are no signs of HCL.
My question is: Has anyone experienced a SECONDARY CANCER since being diagnosed with HCL?
My energy level is normal. And I exercise regularly, eat healthy. This whole thing is mind boggling too me.
Please respond. Any information would be appreciated. thank you, jeannie
jeannie white - 10/30/99 02:30:17
My Email:jw4@ix.netcom.com
Hello,
I was diagnosed with HCL in 1986, I was 26 at that time. Since then I've had 2 relapses. One at 5 years post a splenectomy, the other 4 years ago. Both times I recieved chemo...the first
time: Pentostatin, the second time: 2-cda.
Recently I noticed a lump in my abdomen, near my belly botton. After numerous tests, it has been diagnosed as a "a small blue cell tumor" which is "poorly differianted carcninoma." Basically, I have a secondary cancer (need to have more tests done for a d
. was told it may be a low grade lymphoma. We are not sure yet.
My question is: Has anyone experienced a SECONDARY CANCER
BERT L. - 10/28/99 23:28:21
My Email:RBLS@HOME.COM
I was surfing the web and came across the HCL web page. I was told I had HCL in NOV 95 and started 2cda chemo March 97. After reading about Mr "T" and his ordeal, I realized I had an easy time. By me, relating my experience, it might help those who ar
about to under go the treat- ment. First I had no surgery, they used a pik in my arm which went up in my arm to a larger vein. This was attached to the portable unit, that I wore as a fanny pack for seven days. The doctor had imformed me of the side e
fects. I had no problems. I told my wife "this was a piece of cake". I returned to the hospital for the removal of the pic, and returned home. Before I left my doctor told me to CAREFULLY monitor my temperature, if it was over 102 for over 2 hours, t
immediately go to emergency. After the first day everything was fine. The next day I had a slight fever, I took some tylenol, and used an ice pack on my forehead. For three days I took tylenol every four hours, and used the ice pack. A number of tim
s my temp almost reached 102, but using the ice I was always able to get it down. I would monitor my temp every hour. My wife thought I was over reacting, I continually stayed ahead of the fever. At the end of the third day I could bring my temp down, a
d it went over 102 for almost 2 hours. I immediately went to emergency, where they admitted me and started giving antibiotics with an IV. Six days later I went home. While I was in the hospital they gave me blood to help my red blood count. After recei
ing the blood I really felt better. After two weeks at home I was feeling overly tired. I returned to the hospital and, found out my RBC was low, so I received more blood. Let me tell you I draggd myself in but, sprinted out(not really). I really felt
ood, and from then on every thing was up hill. In Sept 97 I had a bone marrow check, and ther was no evidence of HCL. My current rbc=16.4, wbc=5,700, plate=13,700, and I feel great. email RBLS@HOME.COM
Stuart Weitz - 10/28/99 19:32:15
My Email:stuart.weitz@pfsfhq.com
I recently was diagnosed with HCL. My oncologist in Atlanta prefers 2-cda. I met with Dr. Grever at Johns Hopkins, who prefers pentostatin, and believes pentostatin might produce a longer remission. What sort of experience have people had with pentosta
in? Also, does anyone have any experience with the effect of these drugs on the kidneys? My creatinine level is a little high.
Joop Pordon - 10/26/99 23:19:26
My Email:joliesma@xs4all.nl
Hi everyone,
Here is Joop from Holland (My story is at “volume 3 date 10-3-98)
After a year of chemotherapy I was told that I have reached 100% remission.
I never expected this news because my WBC went down after 9 weeks without chemotherapy.(from 3.7 to 2.7)
Thanks to the internet I met (by E-mail) several other HCL patients.but…..One patient from Florida came to stay at our house in Holland and when we took our children to Florida to celibrate my remission.We met them in their house,and so we became good fri
nds.(caused by a computer!!!!)
And in Florida I also met the chairman of “hairy cell leukemia foundation” Mr Sherwood Hanford.
So I want to thank him and Mark Taubensee for spending so much of their time to keep us informed about our disease.It was a great comfort during difficult times.
The only thing that is worrying me, is that after 11 months of chemotherapy (with pentostatin) and now after 4 months without it,my side effects are still there:I have a lot of diarrhoea but the most important thing is that I have no physical condition an
mostly I am so tired.(mentally and/or physical)
Is there anybody having the same problem? I’d really like to hear some experiences of other people about this subject..
Thanks Joop Pordon
Laurie - 10/23/99 23:16:03
My Email:maurides@mindspring.com
Well, Ive been very sick which what the Doctor sais is an infection.He is now referring me to a pulminary Doctor.He will NOT tell me whats wrong and will not perform any blood test.Im a 31 year old white female.I started to experience extreme fatigue and
as sick.The Dr. at first diagnosed me with sinutitis.Well, it spread into my lungs causing low grade fever and flu like symtoms in which I still have.I developed thrush in my mouth and a strange rash on my forhead which resemebeled ringworm.I look terribl
.Very pale and not a good appitite.Im exploring on my own the possibilities because i have severe rib pain on my bones.It is so painful, it hurts when a small kitten I have gets on my chest area to sleep.I also have a bad sore throat, ear pain and pain in
the bones in my jaws.If anyone can help me, please let me know.Im very sick and have given up on my Dr.If anyone can help, please contact me.Im getting sicker each day and cannot breath well at times. Sincerely, Laurie
joc c - 10/21/99 18:51:49
My Email:jcjr@webcombo.net
To 1 satterlee: Could you email me(jcjr@webcombo.net) or post the cost and where this essiac could be ordered? Also how much and how often per day do you take it? Thanks for any info you can pass along. I tried your email but my server couldnt connect,
h 336 282 9645 just in case your email doesnt connect Joe C
lsatt - 10/20/99 23:47:53
My Email:l_satterlee
Hi me again!! Last time I checked in to the site my white count was 2.7 and I was thinking chemo was in my near future. I started taking Essiac (which another person said hadn't helped). Well, after taking it for about 6 weeks I had another blood count d
ne. Hemog..14.5, Platel... 164,000 and most remarkable of all WHITE 4.5. Best of all...I feel wonderful...Best I h ave felt in years. This stuff may not work for everyone but it has left me feeling so good my husband is starting to take it too. Anyone
lse out there want more info about it just give a yell...and if you have any info on anything that is working for you please let me know about that too.
- 10/18/99 02:42:41
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robert kemp - 10/13/99 11:19:28
My Email:robert44robert@hotmail.com
please go to the section under messages posted for an answer.
- 10/13/99 11:14:40
linda - 10/13/99 02:26:34
My Email:mottz1025
Hi, Today is my husband 2nd day of 2cda treatment. Says he is feeling fine. Dr. said he may get a fever, maybe not. He is getting it threw a iv in the hospital. Five more days left. Can anyone tell me how they felts when they first came home. Just wonder
ng?? Thanks for listening. Linda
- 10/13/99 02:21:57
- 10/12/99 13:21:26
Bob Heeter - 10/11/99 06:59:02
My Email:REHeeter @aol.com
I, too am a survivor of HCL.It was good to read Mark's Story. Mine was simular but different.I went to hospital every day for direct IV of 2 CDA,which took about 1 hr.. I had no discomfort till the 7th day, became very weak and returned to hospital.I had
ery high fever in Am-they thought fever was going to do me in.I had 29 units of blood over the next 12to 14 days. The blood levels were very slow to increase. Appetite was completely gone! Family bought in good tasting fast food and milk shakes. I also ha
portable Iv for 16days. I think I was one of the first users of 2cda starting on June 23,1995. At that time I was 65 yrs. old and still workingin inside sales. I did retire in July of 1995. I moved from Chicaco to sunny Tampa, Fla. where I am in reasonab
y good health. I have blood work done every 3 or 4 months. Asprin products cause almost immediate internal bleeding. Good luck to us all. My insurance paid bill came to $250,000-about $30,000 for blood alone. Regards, Bob
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jeanniee - 10/09/99 04:32:29
My Email:jw4@ix.netcom.com
hi, my name is jeannie. I was dx with HCL when I was 26 years old, now I'm 40. I'm amazed at all the comments here. Back then, I was on a mission to chat with ANYONE who had this disease. I have gone out of remission 2x's. THe first time was 5 years post
my splenectomy, then a few years
later. I received Pentostatin the first time, then 2 -CDA which was so much easier!! than pentostatin. I have been in remission for 4 years, 2 months since receiving 2-CDA. Thank you for having this message board. We all need to share and connect at times
take care
- 10/08/99 19:20:34
- 10/08/99 00:06:01
- 10/07/99 19:06:51
linda apap - 10/07/99 18:22:27
My Email:mottz1025
My husband is 42 years old has just been diagnosed with HCL. He will start treatment with 2cda on Monday. I have been told of a place in New Mexico that can help him without chemo but he has to go there and be treated for 1 week and then get I.V.s up here
in New York The drug name is cydocaine and has no side effects. Help confused and would like to know if anyone else has heard of this form of treatment. His wbc is 1.5, low platlets and red blood. Our oncologist told me there is a 90% effect rate with 2cd
. Please wrire back
AARON ROSENBERG - 10/06/99 18:34:34
My Email:AROSENB554@AOL.COM
HI,
MY NAME IS AARON (34 YEARS OF AGE), AND IVE BEEN DIAGNOSED WITH HIGH PLATELETTS. IN 1998 MY COUNT WAS AT 840,000 BUT AFTER A BONE MARO TEST WHICH CAME UP NEGATIVE THE DOCTORS FELT THAT WE SHOULD JUST MONITOR IT FOR NOW AND SEE HOW THE THE LEVELS MAINTAIN.
9/27/99 MY COUNT IS OVER A MILLION. THEY HAVE NOW REFERRED ME TO THE CLEVELAND CLINIC FOR MORE TESTS. JUST WONDERING IF ANYONE MAY HAVE SOME INSITE TO THIS OR ANY SUGGESTIONS.
THANK YOU,
AARON
mark taubensee - 09/23/99 12:04:01
please leave your comments by accessing the home page and clicking on "Post a Message on My Message Board". If it isn't working properly please let me know......dovelake@kiva.net
Albion - 09/15/99 14:45:18
My Email:morgana6@home.com
Hey Kid-
Finished a round of chemo in July, diagnosed in April, had it for years
but noone diagnosed it. I'm 48, was always active- gym, jogging, etc.
I was also a chiropractor for many years. My doctor said my energy was slowly returning because my white blood cell count, previously .5, was
2.2 at that time.
Try a broad spectrum MINERAL supplement, buy extra magnesium- take it
with the mineral supplement; take acidophalus powder EVERY day.
Try these things, they may help.
David
robert kemp - 09/15/99 02:45:47
My Email:septic@chorus.net
Bob,
My name is robert Kemp and you can read my history in the readers comments, but to respond to you,I was first diagnosed with HCL in March, 1992. I was given a 7-day course of 2-CdA. I was OK for 4 years, but in January, 1996, I had a relapse. I was tre
ted again with 2-CdA, and I am OK now, but the fatigue has remained with me even though the counts have been OK. I will be seeing the doctor next week and will let you know if there is a change. I am a 54-year old retiree. When I took 2-CdA, it was not
FDA approved...I did this at Northwestern University in Chicago. There are trials going on at Scripts in San Diego regarding Monoclonal Antibodies and there is a drug out called Rituxan. Robert
Rob MacNichol - 09/15/99 02:28:40
My Email:rmacnichol@ivc.cc.ca.us
Hi Bob, we've moved over to this site:
http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1
I'll answer you there.
Bob Kaplan - 09/14/99 15:20:24
My Email:RKAP25@AOL
I am 48 years old and was diagnosed with HCL in 1994 during an annual physical. Unknown to me, I had all the symptoms--enlarged spleen, easy bruising. It went unnoticed. My doctor sent me to an oncologist who, after taking a blood test, performed a bone m
rrow biopsy. I was blessed that this doctor had a wonderful,caring manner about him, and he assured mw that what I had was treatble and curable. After the initial shock, we determined that interferon was the first plan. 2CDA was considered but at the time
a little dramatic based on early results. I took the shots for over a year and made progress, but not enough. We decided on a 2cda treatment the following year. A week in the hospital was uneventful,and the process seemed to work as a bone marrow biopsy
evealed no evidence of the hairy cell. Over the last year however, the white count began to drop again-both red count and platlet count were normal- and my doctor decided on another round of 2cda treatment. This time as an out patient in his office. Five
aily visits for an hour or so. Following the treatments, I also took daily injections of neupogen to stimulate the white cell growth. My white count, which was 1.5 at the time of treatment, shot up to 5.3. Since the end of the shots the white count went d
wn again, but I am hopeful it will stabilize. Apparently, almost 60% of patients who use 2cda have a second treatment within 48-60 months.
I would like to know from all those with HCL-
Has anyone had a second 2cda treatment? What was the result?
Are you aware of any new drugs or treatment plans that have been successful?
Thank you all for telling your stories about HCL.
You are all an inspiration to me!
Erika Cox - 09/08/99 03:16:54
My Email:PECC523@worldnet.att.net
Hello Mr. T,
My name is Erika. My father, Braxton Day, was diagnosed with HCL on July 07, 1995. It all began in January of that year though. We live on a farm in the small town of Ragland, AL, and my dad also works as a welder at the National Cement Company
there. It all started with a pain in his left side. He went to the company doctor (because of insurance purposes he had to go there first) to get this pain checked out. The doctor told him it was probably a pulled muscle, gave him some pain medication,
and then sent him home (even though his blood work at that time showed an elevated WBC, low platelet count and a low Hgb and Hct). This pain proceeded to get worse over the next month and he went back to the same doctor because only he could refer him to
another physician. Daddy got the same story from his company doctor once a month until June of 1995. My dad finally told him that if did not send him to another doctor he would just pay for it himself. By this time daddy had lost 30lbs. and was sleepin
in a recliner at night because he was having trouble breathing. Finally the doctor decided to do a CT of the abdomen and chest to see what the problem was. The test showed that his spleen was the size of his liver and had to be removed immediately. I
as just finishing nursing school at the time so I knew what the risks of a spleen that size & surgery with a platelet count of 50 were. When the surgery was over, the doctor told us that daddy's spleen was the second largest he had ever removed in all hi
30 years of practice. Daddy had his bone marrow while in surgery. Because of the July 4th holiday, we had to wait until that following Monday for the results. Monday was one of the worst days of my life. The surgeon told us that Dr. Harvey would be s
eing my dad later in the day. My mom knew he was a "cancer doctor" because one of her friends was a patient of his. That afternoon Dr. Harvey told us daddy had HCL. He told us he would have to have chemo and possibly a bone marrow transplant. I could
ot believe what I was hearing. My 45 yr old father who was the epitome of health, the only person in my life who knew the answer to any question and who could fix all things broken could be dying. I am a "daddy's girl" even though I have a younger sist
r, I am his girl. Well, to finish this longer than life story, he started chemo at the end of the month. Daddy took 15 Pentostatin treatments on an outpatient basis. He took one every other week, depending on how well his counts were. His WBC was only
1.9 at one time and since I was a nursing student, I got the priviledge of giving neupogen injections to him once a day for 10 days (we did this 2 times during treatment). That was the hardest thing I think I've ever had to do. It just didn't seem fair.
Daddy finished his last chemo treatment June 21, 1996, on his birthday. Dr. Harvey said that from his tests and results that he had been in remission since November of 1995, but wouldn't tell my mother that because she had become the queen of herbal med
cine and daddy's personal guardian angel. She was also on the verge of a nervous breakdown. Well, today is September 07, 1999, and in November of this year my dad will have been in remission 4 years. Only 1 more to go and he's "cured". My dad is more
han cured, he's been healed. Through the faith of my friends, family, community and church members, all of our prayers were answered. It could only have been a touch from Jesus that saved daddy, I know, I've been an oncology nurse now for the past 3 and
a half years. I see everyday what people with cancer and leukemia go through. During all his treatments and surgery, he never once received platelets or blood. So many of my patients are now that fortunate. My dad also feels a little guilty, I beleive
because a friend of his he went to school with was diagnosed with HCL the same time daddy was and he is not doing very well. His friend has had all the chemo, blood, platelets, etc. that can be done. I think he needs a bone marrow transplant, but won't
get one. I think that's a little crazy because we have done everything possible to keep daddy alive and healthy. Our rugged caretaker has been turned into our spoiled angel. Your site is a blessing to anyone who visits. It is a vivid reminder that mir
cles still happen and that God is still on our side. God bless you and your family. Psalms 91.
John Corbett - 09/06/99 21:10:22
My Email:fallingstd@aol.com
I attempted to reply to Janie Hetterman's message but that email address did not work.
I have been treated twice with 2cda: once in May 1994 24/7 at New York Hospital and as an outpatient in May 1996. The outpatient route is preferable. The drip takes about an hour. The first time I expereince neutropenic fevers and was readmitted to the
hospital. In 1996 I was put on neupogen and avoided any side effects, except fatigue.
In March 1999 I experienced another recurrence and have been treated as an outpatient with Fludarabine. Like 2cda, it was administered as a drip for about an hour for five days. I have received four courses of this followed by self-injected neupogen for
ten days each time. In June after the second course, I had a bone marrow aspiration and the leukemia had diminished. Tonight is my last neupogen shot. I assume I will get a bone marrow test later in September. I am interested in hearing from people who
have relapsed after two treatments with 2cda. It is unclear to me what the standard treatment is after a second relapse. Although I live in Maine, my primary oncologist is in New York City.
Aside from fatigue, I have experienced no side effects and have worked thoughout the 1999 treatment. I hope to hear from Janie Hetterman.
Janie Hettermann - 09/03/99 14:44:02
My Email:robhobs@bellsouth.net
Interested in talking with individual that has had 2CDA twice. My past HX - Dx with HCL 1992. Received 9 months of interferon then 2CDA in 1993. Have enjoyed remission since that time but have recently been informed that HCL has reoccurred. Would appreci
te contact with someone that has received this treatment twice.
Thanks......Janie Hettermann
Mark Taubensee - 09/02/99 05:19:05
My Email:dovelake@kiva.net
Please leave your messages in the new section that is accessed from the home page. Comments will be loosely organized by topic....
Bryon Butler - 08/27/99 02:35:18
My Email:bbutler@valinet.com
This site continues to be a regular site on my computer screen. I was diagnosed in 1/98, one month before the birth of our first child. I was 32. Now, about a year and a half later, I'm still in full remission, and we have just welcomed our second child
into the world. Needless to say, her birth was much less stressful...
Life has gone on, and gone on well. We leave in a few months for Costa Rica for work, and later into South America. Thank you for everyone who has written their stories.They continue to be an important part of my life. We all need each other, whether in
hcl or in remission. Peace.
Rob MacNichol - 08/23/99 20:48:55
My Email:rmacnichol@ivc.cc.ca.us
Hi Bob (Robert Kemp)
Thanks for the profile. Are your rbc's low, and is that what the "tiredness" is from? Do you work, or must you spend a lot of time resting. My only problem is that my (right now) my netrophis are low (below normal). my rbc's are just below normal (but
I feel fine), and my plateletts are way up there. Anyway, if I don't go hunting around the www for info on HCL I live a pretty normal life, exercise, and work.---- but I'm curious about how your situation affects your daily life concerning work, rest, re
reation, and even how you feel mentally and physically (up/down) and what your doctors tell you about future treatments etc. ..... thanks Rob
robert kemp - 08/20/99 17:47:33
My URL:http://www.chorus.net/
My Email:septic@chorus.net
i thought i sent this so if you get it twice...sorry. i am a 54 year old retired probation officer who is also an hcl patient. i was ist diagnosed with hcl in march,1992 and i was found to have the disease after a severe nose bleed and a trip to the emer
ency room. i was treated with 2-cda at northwestern university when the drug was in the expermental trial stage.i received 7-days on the portable infusion pump. i was hospitalized at northwestern by dr. tallman, who was treating me. my temperature was as
igh as 105.6 at it's worst. i did,however, recover and subsequently went into remission. i never really recovered from the fatigue....and still have it. i relapsed in jan,1996 and received 2-cda again.....and then back into remission. i have had blood cou
ts that are in "ann acceptable range",but are on the low end of the range. i have not had a bone marrow in 2 and one half years annd see the doctor every 2-3 months, but feel tired and have lost weight, but no infections, no night sweats and a normal siz
spleen. the illness has caused me considerable stress, but i am thankful for thhe treatment and the remission. thanks again for the web site...bob
mark taubensee - 10/24/98 15:37:45
My Email:This website author..dovelake@kiva.net
Occasionally I have to place prior comments in the Archives to keep this page from getting too large to load quickly. Things have been very active lately here. Now that you've read the most recent entries, read the archived comments.Volume 1 (the oldest), Volume 2 , Volume 3, Volume 4, Volume 5
