Mom newly diagnosed T-PLL

Hi everyone,

My mom was recently diagnosed with T cell Prolymphocytic leukemia, a very rare, more aggressive form of leukemia.  I have searched the internet and most of what I have found is 5-8 year old information.  Does anyone know of any more current info, either websites or other places....  She is currently taking Campath subcutaneously 3x/week...   thanks for any and all help and info.... 

I am 60 and am 78 months out from diagnosis after a Campath induced remission in  '02, relapse and remission in '04, followed by a non-myeloablative (mini-) allogeneic stem cell transplant in '04 also.  There is very little literature because this is a rare disease and not many peoiple are working on it, plus it is hard to compile data with such few subjects (maybe 125-150 US new cases per year).  There was a scattering of studies out in '02 - '03 highlighting success with Campath.  Campath remains the treatment of choice, sometimes paired with drugs in the Pentostatin family. The disease, as far as I know, is still considered uncurable.  But 78 months months is certainly simething to aim for.  I have been blessed.

 

On 5/21/2008 utriumph wrote:

I am 60 and am 78 months out from diagnosis after a Campath induced remission in  '02, relapse and remission in '04, followed by a non-myeloablative (mini-) allogeneic stem cell transplant in '04 also.  There is very little literature because this is a rare disease and not many peoiple are working on it, plus it is hard to compile data with such few subjects (maybe 125-150 US new cases per year).  There was a scattering of studies out in '02 - '03 highlighting success with Campath.  Campath remains the treatment of choice, sometimes paired with drugs in the Pentostatin family. The disease, as far as I know, is still considered uncurable.  But 78 months months is certainly simething to aim for.  I have been blessed.

Hi,

How did you find out about your disease? My loved one thought he had gallbladder issues and found out he had T-cell PLL after bloodtests, CAT scans etc.  His oncologist says he's never treated this before and has referred him another physician.  Your posting has given me hope to pass on to Dean. 

Please keep posting things to continue to give people hope.  Thank you.

Diane

 My mom was diagnosed with the T PLL from a blood test during an annual exam.  Her WBC was 307,000.  Her symptom was that she had been feeling more tired over the previous 6-12 months.  She has been on Campath for 10 weeks now and has made very good progress (thank you God).  

Robin 

I had posted something on my mother, who is 80, had been diagnosed with CLL to begin with in March 07. The doctor treated her with chemo for several weeks, but it was discovered after the chemo only worked and kept things at bay as long as she was on it.  We were referred to a doctor at the Sarah Cannon Cancer Center in Nashville and from the blood test they did there, it was discovered that what she had was T-PLL and she was put on Campath 3x a week for several weeks.  It was close to Christmas holidays when she began this, so she actually had 2 weeks of treatments, then off a week or two, then back on for another few weeks.  By February she appeared to be in a form of remission.  The doctor wouldn't actually go so far as to call it that.  Things stayed where they were until she had a situation arise with her right eye. We were back in Nashville, this time at Vanderbilt, to have this looked at.  After 3 weeks of coming and going, it was determined that she should have a biopsy done and the floaters that were giving her problems removed at the same time. This was decided sort of spur of the moment and we found ourselves getting her admitted for this "urgent" surgery.  Of course there were antibiotics and prednisone doses ordered and after a while, she began exhibiting signs of the leukemina rearing it's head again.  Her main problem is low platelet count.  She has had 3 transfusions in 10 days time to try to get this improved.  Last Tuesday she had 10 units of just platelets infused and yesterday and today she has felt like her old self.  Tomorrow we go in for a blood check to see how she is doing.  I dread these days because we haven't been hearing positive news, but my mom is the optimist of the year and feels tomorrow will be different.  I hope so.

 All that to tell you this.  The attitude does play a huge part. Take care of yourself. Ask lots of questions, and don't give up.  Get another doctor involved rather than accept what one doctor may be able to do.  Our doctor is a wonderful man, and he is not too proud to check with the folks at Sarah Cannon.  He has cared for her during her colon cancer scare, and she recovered from that.  This is just something new that cropped up and he is being vigilant in caring for her.

I am so glad to see you all posting your situations.  I will be a faithful observer to see what you all add.  Keep my mom in your prayers. Her name is Virginia.

 Linda

Linda,

So glad to hear your mom is doing better.  Unfortunately, my mom, who was diagnosed with T PLL in March (she was 81) died July 12th.  The official death certificate said pneumonia and acute respiratory failure.  Although, they never found out during her 6 days in the hospital, what was going on in her lungs.  they did various tests and all came back negative.  Her campath treatment seemed to have been very successful (11 weeks on it) because her last bone marrow biopsy showed no signs of leukemic cells.  Unfortunately, her WBC went way too far down, to 2 down to .5.  Her platelet count was also very very low.  She had received a couple blood and platelet transfusions and the counts went up a little for a day and then dropped back down.   We had expected her to pull through and be around for awhile longer as she had been extremely healthy before and didn't even so much as take any aspirin ever.  

 I also strongly support your comments about doctors.  She had a great doctor and team (Dr. Susan O'Brien) at MD Anderson in Houston, but unfortunately her ongoing oncologist doctor in San Antonio believed that he was god and didn't need to consult with others even though they had experience with the disease and with the treatment.  I also want to encourage people to NOT go to North Central Baptist Hospital in San Antonio.  They did some innapropriate things and had a doctor that did something that was not good...  

Please keep us all posted on your mom's progress, and how you are doing.  

Thanks,

Robin 

Robin,

Thanks for your interest in my mother. I am SO sorry to hear about your momma and it just distresses me to hear things like what happened to her.

We are at the hospital now getting 10 units of platelets, once again, and this time the platelet count wasn't as low as it has been when they have sent her over, but since it is the weekend, they felt it better to go ahead and do it rather than make her wait till Monday and maybe have a nose-bleed on Sunday and have to go to the ER.  We are happy that the count is higher for a longer stretch of time.  It seems small improvements mean a whole lot these days.

She is still energetic, healthy and cares for a bookkeeping job she can do from home once a month.  I believe this adds to her quality of life more than anything.  She stills drives and the doctor has not said she should discontinue this...so this small independence is helpful to her state of mind, too.

Thanks, again, for responding and I will post her progress as I can.

Linda

call dr. ravandi@m.d. anderson cancer ctr.,univ of texas,houston texas.

Hi Linda,

I am just wondering how you and your mom are doing?  I have thought of you several times over the past couple months.  Let me know when you can.

Robin 

Thanks for the info.  We did have mom see Dr. O'Brien from M D Anderson.  She was great...  Unfortunately mom couldn't stay in Houston for treatment so Dr. O'Brien consulted with the Doc in San Antonio.