TPLL

Hi and welcome to the Online Community but so sorry to hear about your TPLL diagnosis.

When you say TPLL you are referring to T-Cell Prolymphocytic Leukaemia. TPLL is rare and as a result we don’t have a specific group but we do have our general Leukaemia group that you can have a look at.

You can also put in TPLL and/or Alemuzatab into the search tool  near the top and look at the older posts, if you want you can hit reply and see if they are still looking in.

If you need some more help do get back to me as I also have a rare type of blood cancer but have been on my road for 22 years.

Hi

I have tagged Hickerchick as her husband also has TPLL and she was posting a few months ago. Hikerchick can you offer and advice for Clover37?

Thanks

Hi , I’m sorry to hear you’ve got this diagnosis. My partner had TPLL and had a course of Alemuzatab. He was only diagnosed in March this year so I’ve not much experience with it but I’m happy to help, if you’ve any questions please ask away. There is also a TPLL support group on Facebook, I’ve found it really helpful and I couple of people in there are from the UK which I found really helpful. Please don’t feel alone, it’s such a rare form of leukaemia and it can all be very overwhelming. Hope to be able to help. Xx

Hi Paul1969thanks for the tag x

Hi Clover,

My partner has recently been diagnosed with T-PLL. It was detected during routine bloods for a knee op... At the moment he is being actively monitored. The proposed treatment when he starts to deteriorate is Campath ( 85% success rate ) 3 times a week for 12 weeks.Thereafter, donor SCT as the only possible curative. It is a stressful time. I wish you all the very best on your journey. 

Hi Molls58,
sorry to hear of your partners diagnosis. My partner too had TPLL. If you ever need an understanding ear please don’t hesitate to contact me. Sending much love xxx

Hi Hikerchick, thank you for your response. May I ask you a couple of questions re your partner’s condition? 

Has you partner undergone a successful transplant?

My partner is 72 years of age, so he is almost at the tipping point where they may not do SCT. Is your partner much younger than mine?

The prognosis for TPLL is very poor, even with treatment - we were told 30% chance of success. Is this something your partner was told.

Thank you xx

Hi definitely happy to answer any questions. Sadly my partner passed away in August last year just 4 1/2mths after diagnosis. 
He was 63 yrs old and responded amazingly well and went into remission after 12 weeks of Campath. We went to Christie’s to discuss SCT. They wanted him to continue on the Campath until a suitable donor was found. Sadly his local Haematology team didn’t organise this and left him 6 weeks without treatment when he then relapsed. 
We were told he had a 75% chance of the SCT being a success but that it wouldnt cure it as research has shown that it usually returns within 2-3years although there are exceptions to this. 
TPLL is sadly a very cruel disease. One thing I would say is make sure you push for everything. We found his local team had no experience of this particular type of Leukaemia and we had to do the research re treatment and management of side effects. 
Although my partner died I have a lot of experience of living through this with him and would be happy to share experiences of Campath etc if you feel this would be helpful. 
I wish you both well and due to the rarerity of TPLL I found it a lonely place to be his partner so if you just need an ear any time please reach out xx

Hi Hickerchick, sounds like your husband and you were let down badly. I am so sorry for your loss. Heartbreakingly devastating given it could have been avoided.

We are finding so many contradictions with T-PLL. Our local team have not experienced this type of cancer. They are relying on statistics and speaking to other hospitals. They contacted Royal Marsden who agreed to Campath-STC as the correct treatment plan. We live in the South West, and the hospital which specialises in STC said they previously treated 3 people with T-PLL. Unfortunately, they did not survive due to complications…Fills you full of confidence (not).

Back in October 2021 my partner was going in for a routine knee replacement. T-PLL was discovered during routing pre-op…official diagnosis was confirmed in Dec after bone marrow biopsy.

They told him remission would be 8 to 12 months, and chance of SCT being successful is 30%. Unlike you, 75%? 

We have been told at the moment given my partners disease is indolent, and he is well “Active monitoring” is a reasonable option. As soon as the bloods start to rise and he becomes unwell, he will be starting on campath. We are waiting for an appointment to see the SCT team. We will have lots of questions for them.

As you quite rightly say, this is a rare and cruel disease hence the lack of clinical trials, and research…

Our observation is, the medics really do not have enough knowledge or cases to determine definitive answers…xx

Thank you and Im sorry if my story has upset you at all, I certainly never meant to do that.

 It is so very scary and like you say there is so little info out there, it’s good that your partner’s disease has been found early, my partner had no symptoms until 6 weeks prior to diagnosis but then his GP refused to see him saying it was long covid, by the time we finally got him admitted he was already at stage 4b but even so the treatment worked great for him. 
I’m here for anything you might need, it’s a difficult journey for both of you but I found it hard to sit back and watch my partner go through stuff. Question everything, don’t worry about feeling pushy if you need to be. We phoned every day about my partner continuing his treatment.  
Please don’t feel you have to keep in touch but I’m happy to. 
xxx