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feistygal's Message Board Messages

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On Apr 16, 2010 10:08 AM SallieNZ wrote:

Hi, I was diagnosed with T-Cell LGL last year. It took ages to diagnose - being mistaken for myelodysplasia at first which I am very thankful to have been 'downgraded' to LGL.  After having been transfusion dependant from May to October, I was put on methyltraxate and prednizone.  The prednizone has worked but the methyltraxate has not.  I have not had a transfusion since October but it wasnt until the Prednizone dropped too low that my bloods dropped too. 

My doctor's research has suggested that removing my spleen would allow all the blood cells into my system and stop the haemolosis (not sure of the spelling there).  Has anyone done this?  What are the long term results?  I am really not enjoying the prednizone and want to get off it.  My liver is not happy with the meds either, which is why the doctor is reluctant to try some of the other tablets there. 

I am taking extra supplements like folic acid and calcium, but cannot find any certain data as to what I should take and how much.  I am still working full time and although I get very tired at times, I am sure it could be worse.  Because this condition is so rare is very hard to be sure that the offered treatment is going to work.

Any input would be appreciated. Thanks


Contact the Complementary Medicine department at the University of Texas, M.D. Anderson Cancer Center for a review of the over-the-counter supplements you're taking and they might be able to advise you....

I was declared spontaneously healed of T-cell LGL and Rheumatoid Arthritis in May of 2008 by my clancer center.  They don't know why and admit that it's nothing they did.

I'm lucky...Hope you are too.

I emerged from treatment of stage 3B breast cancer in 1995 with Rheumatoid Arthritis (RA) for which I was treated with Methotrexate for about 5 years then switched to Enbrel.  Two years later, during my 8 year breast cancer check-up I was diagnosed with T-cell Large Granular Lymphocytic Lelukemia and was told that LGLL usually shows up in people with RA.  Going back through my blood tests, my cancer center determined that the LGL showed up two years earlier, when I stopped taking the Methotrexate.  They think the Methotrexate masked the LGL the previous 5 years because it's often used to treat LGL.  That was 2003.  I was not given any chemotherapy treatments for the T-cell LGL...only a few months of Neulasta shots to boost the white blood cells and a Aranesp to boost the red blood cells.  I hated how I felt when getting those shots so I asked them to stop.  That was 2004. Had check ups every 4 months from then on.  In May of 2008, my leukemia oncologist and the Rheumatologist that I used at the cancer center both declared me spontaneously healed of my LGL, admitting that they don't know why I'm healed and that it has nothing to do with anything they or the cancer center did.  (I had not had an RA outbreak since 2002 and my blood counts were good for over a year). 

I tell you all this for a several of reasons:  1) The article on chemical toxins and related comments made me realize that I could have been subjected to a toxin of some sort way before my breast cancer because I had a low white blood count most of my life; 2) to give you hope--who knows, maybe others can be declared "spontaneously healed"; 3) to start a dialog with cancer survivors and caregivers who are dealing with life/health issues related to long-term cancer survivorship; 4) to start a dialog with cancer survivors and caregivers who are dealing with multiple cancers and chronic illnesses (I also have Basal cell skin cancer, Type 2 diabetes from the steroids) and very importantly; 5) to start a dialog on T-cell LGL--While compared to other cancers, Leukemia, itself, is considered quite rare and T-cell LGL is even more rare.  In fact, it's not even listed in the "rare" Leukemia, rather it's lumped under CLL (a B-cell Chronic Lymphocytic Leukemia).  If T-Cell LGLL continues to be buried under other Leukemias, how and when will "we" and science find out it's cause and cure? And, if there is no dialog between those diagnosing and/or diagnosed with T-cell LGLL, then when will it ever be put on the "charts"?

With gratitude for each and every moment,

Susan M--I am a 3 time CANcer THRIVEr! I support Clinical Trials and am a Leukemia SPORE Patient Advocate, a Melanoma and Skin Cancer SPORE Patient Advocate, and a Breast SPORE Patient Advocate.  SPORE stands for Special Programs on Research Excellence and are grants awarded by the National Cancer Institute to Cancer Centers who proposal clinical trials in specific disease areas.  Requirements of each SPORE grant is the inclusion of volunteer cancer patients to serve as patient advocates and to provide input that helps oncologists relate to patients.

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About feistygal

Caregiver, Survivor, Patient
Leukemia, Skin Cancer, Skin Cancer - Basal Cell, Breast Cancer
After Treatment, Alternative Treatments, Cancer Nutrition, Cancer Prevention, Clinical Trials and Research, Diet, Emotional Support, Insurance, Lifestyle, Massage Therapy, Naturopathic Medicine, Prevention Tips, Recipes, Side Effects, Spiritual Support, Supplements, Acupuncture

I am a 3 x CANcer THRIVEr with diabetes! Breast, Leukemia and Skin -- 15 years & counting! I believe An Attitude of Gratitude is essential as well as paying-"it"-forward whenever you can. I am an active volunteer supporting other cancer patients and their caregivers, a patient advocate supporting patients deciding on clinical trials, and a staunch supporter of addressing issues that emerge over time for the long-term cancer survivor.

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