donita
05-01-2002, 02:35 PM
I'm a 38 year old female scheduled to see an oncologist on Monday for diagnosis. Pretty sure I have it. Can anyone tell me based on the symptoms which one it might stand out as? I have no health insurance so trying to minimize testing costs as much as possible. Also, can you tell whether it's in an acute or chronic stage? Lastly, what do most leukemia patients die of as a result of the disease? Pneumonia? My symptoms (which I have had for the last few years) are constant fevers (often now), easy bruising, bleeding gums (almost all the time now), fatigue, chronic respiratory problems. I have some other strange symptoms which not sure attributable or not which include constant eye twitches. I don't have any joint pain yet, but having some headaches (although that could be anything). Also, I live in Chicago by myself dealing with this. Can anyone recommend a good support group, online or otherwise? Thanx.
Sponsor
Paraclete
05-02-2002, 10:43 PM
You are going to have to wait and see the Onchologist. Have you had a bone marrow biopsy done yet? Only your Onc will be able to tell you what type of Leukemia you have. Hang in there.
Jay
Jay
Jay Tor
05-03-2002, 03:32 PM
Once you've obtained a diagnosis, visit the NIH clinical trials Web site to see if there's a clinical trial for your particular cancer. Usually, participants of NIH-sponsored clinical trails do not have to pay as much, if at all, for the tests and treatments performed as part of the clinical trial.
http://www.nci.nih.gov/clinical_trials
Another benefit of participating in NIH-sponsored clinical trials is that the researchers, hospitals and doctors running these trials are among the best in their respective fields. And, often these trials include the leading research facilities in several countries. We live in Canada and our child participated in an NIH-sponsored POG (Pediatric Oncology Group) clinical trial.
There are organizations that can help you obtain prescription drugs; check the National Cancer Institute's patient resource guide. As well, some pharmaceutical companies specializing in cancer research/ therapies have patient support programs whereby patients can obtain meds.
http://www.nci.nih.gov/clinical_trials
Another benefit of participating in NIH-sponsored clinical trials is that the researchers, hospitals and doctors running these trials are among the best in their respective fields. And, often these trials include the leading research facilities in several countries. We live in Canada and our child participated in an NIH-sponsored POG (Pediatric Oncology Group) clinical trial.
There are organizations that can help you obtain prescription drugs; check the National Cancer Institute's patient resource guide. As well, some pharmaceutical companies specializing in cancer research/ therapies have patient support programs whereby patients can obtain meds.
Jay Tor
05-03-2002, 03:44 PM
For online support groups, try ACOR [Association of Online Resources], they have different mailing groups for different cancers including leukemias.
Stana
06-04-2002, 06:36 PM
Donita,
Have you heard yet from your doctor...I hope it's good news...your in my prayers.
Stana
Have you heard yet from your doctor...I hope it's good news...your in my prayers.
Stana
Jeaniebb
06-10-2002, 02:27 AM
Donita, I too have been told I have Lukemia. I have had 3 bone marrow byopsies,and they came out that its true. I can`t tell you if its chronic or not but I think thats what they said. My prayers go out to you and my heart.I too, get tired, bruise easily, little appetite. I also feel like I have a shortened temper.
I too want to know , do we die like this, or is the worst yet to be ? And when I finally lie down for sleep I need a pill to put me there !! I`m on neuron-
tin 3600mg. a day,plus klonipin .05 3 x daily. I take inderal 80mg. daily, now they want to try 40mg of paxil. I hav-en`t so far. I`m frightened too. Some days I really crawl out bed, and turn around to get back in.Please tell me someone am I running out of time ? I had a full hemoraged stroke. nearly killed me
but Jesus held my hand, and here I am. Its not time I know that, but whats ahead ? I`m a white 55 yr. old fe-
male, I`ve had my single birth babies 9 times. 14 grand
children, one great. But they shall carry on, I just want some one to tell me more of this life robber, and what you`ve tried, or will try, what you`ve heard.how long is a remission, or is it a dream ? Moffits a fine hospital, but I want to be "me" again. So, Donita lets tackle this together. I`ll help you with what I know, and you do the same for me.And I will, always I will pray for you. Please someone help us, answer all our questions. I`m no dummy, been in the other side of the field,(desk) now I`m the pt. help ok ? help her too ?
I too want to know , do we die like this, or is the worst yet to be ? And when I finally lie down for sleep I need a pill to put me there !! I`m on neuron-
tin 3600mg. a day,plus klonipin .05 3 x daily. I take inderal 80mg. daily, now they want to try 40mg of paxil. I hav-en`t so far. I`m frightened too. Some days I really crawl out bed, and turn around to get back in.Please tell me someone am I running out of time ? I had a full hemoraged stroke. nearly killed me
but Jesus held my hand, and here I am. Its not time I know that, but whats ahead ? I`m a white 55 yr. old fe-
male, I`ve had my single birth babies 9 times. 14 grand
children, one great. But they shall carry on, I just want some one to tell me more of this life robber, and what you`ve tried, or will try, what you`ve heard.how long is a remission, or is it a dream ? Moffits a fine hospital, but I want to be "me" again. So, Donita lets tackle this together. I`ll help you with what I know, and you do the same for me.And I will, always I will pray for you. Please someone help us, answer all our questions. I`m no dummy, been in the other side of the field,(desk) now I`m the pt. help ok ? help her too ?
Jay Tor
06-10-2002, 04:05 PM
The therapy sometimes depends not only on which type of leukemia you have [AML, ALL, APL, CLL, CML etc.] but also which sub-type.
About 2 years ago, the FDA fast-tracked Gleevec / Glivec for CML because it stops/reverses CML in many patients. However, Gleevec is not a permanent cure for all CML patients; some patients relapse at which point a bone marrow transplant is considered.
Have you checked the National Cancer Institute? There's a lot of information available on different cancers, therapies and clinical trials.
http://www.nci.nih.gov/
About 2 years ago, the FDA fast-tracked Gleevec / Glivec for CML because it stops/reverses CML in many patients. However, Gleevec is not a permanent cure for all CML patients; some patients relapse at which point a bone marrow transplant is considered.
Have you checked the National Cancer Institute? There's a lot of information available on different cancers, therapies and clinical trials.
http://www.nci.nih.gov/
tinam2002
06-14-2002, 12:29 PM
HELLO,U CANT BE SURE U HAVE IT AT THIS STAGE,,U SAY U HAVE HAD THESE SYMPTOMS FOR YEARS,,HAVE U HAD ANY BLOOD TESTS AT ALL.U MAY BE WORRING ABOUT NOTHING OR SOME THING DIFFERENT,WHAT MAKES U THINK U HAVE IT ,,WHAT DOES UR DOCTOR SAY.TRY NOT TO THINK TO FAR AHEAD UNTILL UR SURE WORRING ABOUT IT CAN MAKE U FEEL ILL ASWELL,STRESS HAS TERIBLE AFFECTS ON UR BODY ..I KNOWQUIET A LOT ABOUT LEUKIEMIA BUT IM NOT REALLY SURE ABOUT WHAT UD LIKE TO KNOW.IF UD LIKE ANY THING ANSWERED JUST ASK AND REMEMBER UR NOT ALONE.
SILLYPOOHBEAR
07-22-2002, 04:54 AM
HAVE YOU TRIED TO GET HEALTH INSURANCE FOR LOW INCOME PEOPLE. I AM NOT SURE WHAT STATE YOU LIVE IN BUT I THINK ALL STATES HAVE HEALTH INSURANCE FOR PEOPLE THAT CAN NOT AFFORD PRIVATE INSURANCE. I HOP FOR THE BEST FOR YOU. I NEVER KNEW ANYONE WITH THIS TYPE OF CANCER BUT WHEN I WAS 18 I SIGNED UP TO BE A BONE MARROW DONOR AND IT HAS BEEN 4 YEARS AND I HAVE NOT MATCHED ANYONE SO FAR. I HAVE BEEN TRYING TO GET ALL MY FRIENDS TO GET TESTED TO BE A DONOR ALSO. WEL GOOD LUCK TO YOU