T-PLL

hi,

firstly, sorry about your diagnosis. my mum got diagnosed 1year ago, she had campath but it didnt work, tho thats not to say it wont for you. she has pentastatin which has worked, and is awaiting a drugs trial. other than a higher than normal wbc she is fit and healthy and you certainly wouldnt know what she has got.  she had campath initially by injection, but reacted to it (the jab, not the stuff) and had a line put in where she got given it 3 times per week. at their height, her wbc were 700+ now they are in the 50-60's.  she had no side effects from campath.

as for advice? follow docs orders about what you can and can't eat, have good hygiene, avoid people with bad colds etc.

Good luck,x

Hi Paul,

I too have T-PLL, diagnosed in May, hows it going? I see this post was 2010....

Lotts

Hi , I just picked up on your post and as this original thread was set up 9 years ago it’s a good chance that Paul has moved on.

I am Mike Thehighlander and I help out across our various blood cancer forums. I was diagnosed with Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL) in 1999 but more importantly - I have had two Allo Stem Cell Transplants with cells from my brother. The first in 2014 and then again in 2015.

I see you have posted a question to our Jane in ‘Ask an Expert’ and she will get back to you in due course.

But can I highlight our dedicated Stem cell transplants for blood cancers Forum where you can connect with others who have been on the SCT rollercoaster.

Please come over and join us as we may be able to help out in so many ways,

Hi Mike, 

ill have a look look on the sct page, thank you for the link,  What I’m finding is that there’s very limited survivors of T-PLL.  I know it’s rare and extremely treatment resistant and aggressive.  Knowing this is awful and so it trying to find out what meds and/or treatment gave others any longevity is hard.  (I did try to send a private message but I could work out how to). 

Hi Mike, 

ill have a look look on the sct page, thank you for the link,  What I’m finding is that there’s very limited survivors of T-PLL.  I know it’s rare and extremely treatment resistant and aggressive.  Knowing this is awful and so it trying to find out what meds and/or treatment gave others any longevity is hard.  (I did try to send a private message but I could work out how to).   There’s forums for lots of other types of leukemia but no T-PLL, seems to prove my point! 

Yes, some types of blood cancers are indeed rare and with this comes the challenges of finding clear information and treatments.

20 years back I was told that I would never see remission from my type of T-Cell let alone a cure....... fast forward to 19 September 2016 I was told I was in Remission and NED (No Evident Disease)...... so never say never.

My condition became rather aggressive so in December 2013 - my count down clock started ticking with 30ish months on the clock. 

My team put out my case far and wide to experts and a plan was put in place...... but you can have a look at my profile Thehighlander.

Finding information that is up to date is a big challenge but let’s see what Jane comes back with.

As I had two SCTs I had two completely different conditioning methods - again see my profile.

The PM system is straight forward. You need to send a friend request to the person and they have to approve it before you can send a message. If the person has left the site this will not get through to them.

I will look out for you on the SCT Forum - renewer and set up your own thread as it helps keep your support together.

Always around to help you as best as I can on this rollercoaster.

Thank you! 

Hi Paul

I’m sorry to hear that you have T-PLL. My mum had the same cancer and we also struggled to find very much information about the disease. I believe that  campath chemo is the best to help. 

Wishing you well

katrina

Hi everyone

I'm not sure if anyone will see this but my brother had T-PLL about 11 years ago.  He had chemo at Pinderfields hospital in Wakefield and his stem cell transplant at St James in Leeds. My brother has had a very healthy 11 years of being free of this horrible disease and had a 100% match with his donor. Unfortunately the T-PLL has returned and we found out yesterday it is too aggressive for them to treat this time and there is nothing further they can do.

know this may sound negative and scary to those who have been diagnosed but please have the hope that treatment can and does work, Nick managed to see his children grow to be young adults and the 11 years he had were symptom free and he was very healthy with a good quality of life.   

Hi

Sorry to hear your brothers T-PLL has come back after all this time. It must be a difficult time for you but thank you for sharing the positive side of the 11 years he has had symptom free and leading a good life.

Wishing you all the best over the coming weeks.