MeZookeeper
05-17-2002, 02:21 AM
Hi,
My name is Linda and I have just been diagnosed with Polycythmia vera. Does anyone out there know much about this disease? I also have Lupus and am Diabetic(type 2). The Lupus is in a full flare right now and with this I have no energy. Once they start treatment will the fatigue and pain get any better? I'm sure I've had this for quite a while and put off getting help. I hopw not too long but has anyone gone through treatment for this? My prayers are with all of you. Thank you. MeZookeeper
My name is Linda and I have just been diagnosed with Polycythmia vera. Does anyone out there know much about this disease? I also have Lupus and am Diabetic(type 2). The Lupus is in a full flare right now and with this I have no energy. Once they start treatment will the fatigue and pain get any better? I'm sure I've had this for quite a while and put off getting help. I hopw not too long but has anyone gone through treatment for this? My prayers are with all of you. Thank you. MeZookeeper
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Jay Tor
05-17-2002, 12:22 PM
Hi:
I'm a parent of a child who had AML so am familiar with some of the HEM treatments. I did a quick search on polycythemia vera and found two articles for you. The MedLinePlus article [see link below] is very brief, and fairly easy to understand.
http://www.nlm.nih.gov/medlineplus/ency/article/000589.htm
There's another medical information source that has much more detailed information and I strongly recommend you look it up. I can't post the link to it because it has a .com address. The site name is emedicine and the article is called Polycythemia Vera and is authored by Emmanuel C Besa, MD, Professor, Department of Internal Medicine, Division of Hematology and Oncology, Medical College of Pennsylvania Hahnemann University.
I also checked the NIH clinical trials. Suggest you look these up too, they may help. Even if you do not participate in a clinical trial, the background information about different therapies is good to have when you and your physician discuss your treatment.
http://clinicaltrials.gov/ct/gui/c/w2b/action/SearchAction?JServSessionIdzone_ct=yvjkz upt81&Term=polycythemia+vera&submit=Search
Based on our child's experience [AML - chemo, bone marrow transplant and graft-versus-host disease] chemo can make anyone feel even more tired. However, since Lupus, like polycythemia vera, is a condition affecting the immune system, in theory it may be possible that the chemo could work either may - that is, it could make you feel either stronger or weaker. A question for you - If you have only recently been diagnosed with polycythemia vera, has your HEM also confirmed that the Lupus diagnosis is accurate [and not a mis-diagnosis of the polycythemia vera]. With HEM disorders, misdiagnoses of secondary effects can occur, i.e the side-effect or secondary diagnosis of the condition is diagnosed while the underlying condition [primary diagnosis] remains undiagnosed.
I think that the best way to reach other people with polycythemia vera might be through another resource available for HEM & ONC patients, ACOR [Association of Cancer Online Resources]. They're a non-profit organization with online support groups for patients/families with different HEM/ONC conditions.
For information, other excellent resources include Oncolink [U. Penn], Cancerlit, and cancer.gov [see link below].
http://www.nci.nih.gov/
Good luck,
Jay
I'm a parent of a child who had AML so am familiar with some of the HEM treatments. I did a quick search on polycythemia vera and found two articles for you. The MedLinePlus article [see link below] is very brief, and fairly easy to understand.
http://www.nlm.nih.gov/medlineplus/ency/article/000589.htm
There's another medical information source that has much more detailed information and I strongly recommend you look it up. I can't post the link to it because it has a .com address. The site name is emedicine and the article is called Polycythemia Vera and is authored by Emmanuel C Besa, MD, Professor, Department of Internal Medicine, Division of Hematology and Oncology, Medical College of Pennsylvania Hahnemann University.
I also checked the NIH clinical trials. Suggest you look these up too, they may help. Even if you do not participate in a clinical trial, the background information about different therapies is good to have when you and your physician discuss your treatment.
http://clinicaltrials.gov/ct/gui/c/w2b/action/SearchAction?JServSessionIdzone_ct=yvjkz upt81&Term=polycythemia+vera&submit=Search
Based on our child's experience [AML - chemo, bone marrow transplant and graft-versus-host disease] chemo can make anyone feel even more tired. However, since Lupus, like polycythemia vera, is a condition affecting the immune system, in theory it may be possible that the chemo could work either may - that is, it could make you feel either stronger or weaker. A question for you - If you have only recently been diagnosed with polycythemia vera, has your HEM also confirmed that the Lupus diagnosis is accurate [and not a mis-diagnosis of the polycythemia vera]. With HEM disorders, misdiagnoses of secondary effects can occur, i.e the side-effect or secondary diagnosis of the condition is diagnosed while the underlying condition [primary diagnosis] remains undiagnosed.
I think that the best way to reach other people with polycythemia vera might be through another resource available for HEM & ONC patients, ACOR [Association of Cancer Online Resources]. They're a non-profit organization with online support groups for patients/families with different HEM/ONC conditions.
For information, other excellent resources include Oncolink [U. Penn], Cancerlit, and cancer.gov [see link below].
http://www.nci.nih.gov/
Good luck,
Jay