Possible T Cell Lgl Leukemia

hi...

symptomatic for over 3 years.  "Possible T cell LGL" says 3 docs including hemo/onc.  No bone marrow test yet as it has not been offered and I am not sure it would matter anyway?????

polyclonal t cells keep rising.  (Over 5000 now for 6 months.) had another test done... "small t cell clones against a polyclonal background". 

 immune compromised.  no reaction to pneumovax... fatigue and low grade fever for over 3 years.  lost weight for a while now stable.

NO autoimmune dx -- tests all negative.   Symptoms include: joint pain, muscle weakness, fatigue, soft tissue pain, foggy brain and memory problems. flushing and night sweats.  EEG shows "wicket spikes" heart murmur...  Immune complexes in blood, protein and blood in urine -- kidneys and bladder fine -- no tumors.  (blood is transient - trace to 2plus.) 

For WAY too long (Over a year) I was told these "vague" symptoms were due to stress.  CFS and FMS was dx.  "Nothing we can do about it." 

Finally I saw a great immunologist.  did b and t cell enumeration study and found high T cells.  tracked for a year and continue to rise as IgM was low and IgG varied.  Subclasses decreased in the year as T cells increased.  Last count, NK in B line percentage had decreased.

 Hem/onc said it takes 3 years for T cells to clone and this is very, very rare.  I want, I need, I would LOVE anyone that might help with similar dx, or situaltion, or professionals that might know more about T cell LGL leukemia. 

Thanking you in advance for any thoughts, links, or professional information.

Em

PS On another subject... my best friend is dying of ovarian cancer.   She kept going as if she did not have cancer.  Chemo, TPN, stiff upper lip... " She did not want to talk about it with others and did not get support from others (like this). It was her way. She burned the candle at both ends -- bright-light for a shorter time, I think. 

She has had a real hard go of it for the last 2 1/2 years.    After 2 years of not-working-chemo, she stopped. 

And you know... this was her way.  She may have lived a year longer if she did it another way?  Maybe not...  But "The c-word" was not allowed into her LIFE.  It "just" took over her body. 

I love her.  And I have learned a lot.   

 

On 1/1/2008 PeaceLearning wrote:

hi...

symptomatic for over 3 years.  "Possible T cell LGL" says 3 docs including hemo/onc.  No bone marrow test yet as it has not been offered and I am not sure it would matter anyway?????

polyclonal t cells keep rising.  (Over 5000 now for 6 months.) had another test done... "small t cell clones against a polyclonal background". 

 immune compromised.  no reaction to pneumovax... fatigue and low grade fever for over 3 years.  lost weight for a while now stable.

NO autoimmune dx -- tests all negative.   Symptoms include: joint pain, muscle weakness, fatigue, soft tissue pain, foggy brain and memory problems. flushing and night sweats.  EEG shows "wicket spikes" heart murmur...  Immune complexes in blood, protein and blood in urine -- kidneys and bladder fine -- no tumors.  (blood is transient - trace to 2plus.) 

For WAY too long (Over a year) I was told these "vague" symptoms were due to stress.  CFS and FMS was dx.  "Nothing we can do about it." 

Finally I saw a great immunologist.  did b and t cell enumeration study and found high T cells.  tracked for a year and continue to rise as IgM was low and IgG varied.  Subclasses decreased in the year as T cells increased.  Last count, NK in B line percentage had decreased.

 Hem/onc said it takes 3 years for T cells to clone and this is very, very rare.  I want, I need, I would LOVE anyone that might help with similar dx, or situaltion, or professionals that might know more about T cell LGL leukemia. 

Thanking you in advance for any thoughts, links, or professional information.

Em

PS On another subject... my best friend is dying of ovarian cancer.   She kept going as if she did not have cancer.  Chemo, TPN, stiff upper lip... " She did not want to talk about it with others and did not get support from others (like this). It was her way. She burned the candle at both ends -- bright-light for a shorter time, I think. 

She has had a real hard go of it for the last 2 1/2 years.    After 2 years of not-working-chemo, she stopped. 

And you know... this was her way.  She may have lived a year longer if she did it another way?  Maybe not...  But "The c-word" was not allowed into her LIFE.  It "just" took over her body. 

I love her.  And I have learned a lot.   

 

suggest you check with dr.ravandi @m.d.anderson cancer center,houston,texas. he is in the leukemia dept.and specializes in t cell leukemia.

Hello, I have had lgl for 16 years and am a new person today. I use olive leaf extract 1500 mg, vitamin c 3000, CoQ10 200, every day with great results. look for my other messages in this site and at Careplace under LGL. God Bless, Longbow

I do not understand... please help me. As I have researched, T cell LGL was first recognized in 1993.  How could this be a 16 year dx?  Also... what are your B and T cell counts and your IgG levels?

I was in the Mayo Clinic in 1995 under Dr Louis Letendre and they told me they had seen lgl for 15 years. I was in the hospital in 1992 with the same disorder. I have not been to a doctor in three years, and am some what discouraged by some of the treatment for lgl. I have never seen anyone healed through cemo with lgl, so I have been using a natural healthy way to address the problem. I am not a doctor and I don`t understand lgl much but what I am doing is working for me. I work 45 hours a week and am living life again. I am 48 years old and very active and there is not much more I can tell you other than I do not have fever,  fatigue, nausea, or any virus. I don`t get sick much anymore. God Bless Longbow

Because LGL is progressive, your body may have been responding to "something" causing your T cells to populate so to "fight something" over time.  Often this could be mistaken (especially before rearrangment studies) for LGL.  It is very rare, as you know.  Today, I believe that most doctors are very careful to diagnose this without new testing available and now being done that can look directly at the T cells for spikes and clonality.

 

In the past, as I understand it, if the T cell count was above 5000 for over 6 moths, this was "the diagnosis" for LGL.  However, this has changed due to recent T cell research.  We have learned that T cell poplulation can rise for years as a means for the body to "fight" something, somewhere -- even a cancer.

 

I am glad you are working...

Save time to rest -- "work at it" if you must. 

 I am glad that you do not have any health problems now.  T cells are a much needed "foundational helper" to your immune system that supports your white cells and overall health.

check with dr.ravandi @ m.d.anderson cancer ctr.,houston,texas he specializes in t-cell leukemia.

 

On 1/25/2008 John Flash wrote:

check with dr.ravandi @ m.d.anderson cancer ctr.,houston,texas he specializes in t-cell leukemia.

Thank-you.

I did write an email and he kindly responded.  He said to get a second opinion from a hematologist-oncologist who has more speciality in this rare form of leukemia.  I wondered where I would start... 

Daily saunas have helped with the pain for me.  In the sauna a few weeks ago, I met a childhood survivor of leukemia.  She suggested SCCA.  (I do not know why I did not think of this.) SCCA has united with John's Hopkins, UW and Childrens.  I feel this is the best I can get nearest to me here.

 I contacted a doctor through "find a physician" on the website.  Again, right away, a physician contacted me via email and she forwarded to her admissions director.   My PCP is in the the process of following through with the referral -- compiling over 3 years of records.  (I would hate to have to go through all that...)  So, I will be heading to Seattle in the next 2 - 3 weeks as communicaed to me via new patient admissions there. There, I will give the name of Dr. Ravandi if the new doctor has not heard of him already.

On aside... I wonder how this all would be played out if I was not a nurse -- familiar with the way "the system" works -- and did not know how to access information via the internet.  I think and wonder how many people may have symptoms of this "rare" illness, but no tests are done, and doctors tell them, "It is stress or depression."  For example,  I have neuropathies... earlier on, my neurologist told me: "Depression hurts." Maybe she helped write the drug commercial?)  I told her, "I am not depressed -- this is physical."   This is my experience... and I see this SO often.  What might it be like to be told over and over again, "CBC is normal so there is no evidence of physical illness."?  I have to wonder too what kind of hold anit-depression drug companies have on physicians today.  In essence, all physical symptoms can be related to depression?

  How important it is to obtain a physician who keeps updated, continues his or her education, and researches on behalf of their patients.  A physician that knows looks at the whole picture -- sees the body as a whole and connects the dots.  That said,  in and out 5 - 10 minute appointments where patients report "vague symptoms" has got to be the most difficult for physicians and patients -- "caught" in the the medical system as it now stands.

 Another example I think of... (while on a little soap box) is a 20 year old patient with sever neurological symptoms more pronounced with heat, incuding headaches and dizziness and vision difficulty -- blurring and blacking out bilateral on each side.  Sleep disorders, RLS and extreme fatigue.  She wrote all her symptoms on a symptoms complaint form provided with her packet of paperwork as a new patient.  That said, the patient's visit to a community health center (due to no insurance) resulted in "Have you been sexually abused as a child?  Are you under any stress at this time?"  At the end of her "appointment" the PCP told the patient,   "Drink more water".  No order for any blood work... 

Noteworthy, the patient's  vitals were: BP 100/60, T. 97.4, and HR 52.  (Okay... I now write with a little gumption)  IF that PCP was "on her game" she could rule out dehydration based on the patient's presentation at time of visit -- skin, eyes, etc., vitals (low HR) and the patient reporting adiquate intake. Can we not expect more from health care providers? Simple blood work would rule out or confirm  hypothyroid, autoimmune process, enemia, etc.  Her visit was a complete and total waste of time and money in the long run.  Why?  Because the PCP required a "follow-up" in 2 weeks (after the PCP gets back from vacation.)  It is my belief that patient appointment clutter is problematic and can be contributed to "status quo" and a lack of reasonable ability to "connect the dots".  Imagine... if a follow-up is required, the PCP could have had basic blood test results as data.  Not a good use of time, in my soapie-foot-opinion.

Venting in the midst of Peace.

m

 

you are right! no telling how long this had been going on with me. I had no insurance untill the first of last year and my new Doctor did initial bloodwork which was ignored. She told me that Cancer did not hurt and ignored all my ailments saying "that's what happens when we get old".  Nine months of chronic infections and fever, I went to the emergency with 103.7 temp, and begged them to keep me, after bloodwork they agreed.  Within two hours, I was told they suspected cancer and admitted me promptly.

I had no chance without Insurance and a struggle even with.

Getting all my new Doctors to work together is my next hurdle.

prayers for the misdiagnosed and undiagnosed. Hope somebody listens.

Thanks, TJ

 

On 1/1/2008 PeaceLearning wrote:

hi...

symptomatic for over 3 years.  "Possible T cell LGL" says 3 docs including hemo/onc.  No bone marrow test yet as it has not been offered and I am not sure it would matter anyway?????

polyclonal t cells keep rising.  (Over 5000 now for 6 months.) had another test done... "small t cell clones against a polyclonal background". 

 immune compromised.  no reaction to pneumovax... fatigue and low grade fever for over 3 years.  lost weight for a while now stable.

NO autoimmune dx -- tests all negative.   Symptoms include: joint pain, muscle weakness, fatigue, soft tissue pain, foggy brain and memory problems. flushing and night sweats.  EEG shows "wicket spikes" heart murmur...  Immune complexes in blood, protein and blood in urine -- kidneys and bladder fine -- no tumors.  (blood is transient - trace to 2plus.) 

For WAY too long (Over a year) I was told these "vague" symptoms were due to stress.  CFS and FMS was dx.  "Nothing we can do about it." 

Finally I saw a great immunologist.  did b and t cell enumeration study and found high T cells.  tracked for a year and continue to rise as IgM was low and IgG varied.  Subclasses decreased in the year as T cells increased.  Last count, NK in B line percentage had decreased.

 Hem/onc said it takes 3 years for T cells to clone and this is very, very rare.  I want, I need, I would LOVE anyone that might help with similar dx, or situaltion, or professionals that might know more about T cell LGL leukemia. 

Thanking you in advance for any thoughts, links, or professional information.

Em

PS On another subject... my best friend is dying of ovarian cancer.   She kept going as if she did not have cancer.  Chemo, TPN, stiff upper lip... " She did not want to talk about it with others and did not get support from others (like this). It was her way. She burned the candle at both ends -- bright-light for a shorter time, I think. 

She has had a real hard go of it for the last 2 1/2 years.    After 2 years of not-working-chemo, she stopped. 

And you know... this was her way.  She may have lived a year longer if she did it another way?  Maybe not...  But "The c-word" was not allowed into her LIFE.  It "just" took over her body. 

I love her.  And I have learned a lot.   

 

Sorry to hear about your friend....I feel I'm a bit like her...only with it not happening.... as I just back from the hospital with my results  from my bone marrow test.(biopsy)....I defiantly got LGL leukemia...and Doctor said it untreatable...so live with it until something comes up...and we can try and delay it....come back in six months and we see if any has changed.....until then I was in denial about it all....but I just can't get it out of my head.....and on top it all I'm the only one case it that hopital and they cover over 2 million people...what hope have i got.... 

all the best

Sally