Hi

[Hiker_chick]

Hi my partner has been diagnosed with TPLL which is a rare form of leukaemia, he is due to start chemo tomorrow and is really worried. I was wondering if anyone else here has been diagnosed with this and what their experience is. Thank you x

[Jm954]

Hi there,Your partner has certainly picked a very rare type of leukaemia/lymphoma as you say.

I'm not sure if you've been given any information at all about it, as there is not much on any of the charity websites.

I did find this information on the USA Leukaemia and Lymphoma Society website but bear in mind that the treatment options that you are given may be different. I hope it will, at least, give you a better understanding and perhaps help you to ask questions with your doctors.

Here it is: lls.org/leukemia/t-cell-pro...

I hope it helps, wishing you both all the very best

Jackie

[Hiker_chick in reply to Jm954]

Hi Jackie, we’ve been given very little information except the prognosis is poor. He has lost 2st in 12 days whilst he’s been in hospital, I trying to push for a dietician appt as he’s really emaciated. They told him he’s a celebrity and wants everyone in the hospital to come and “ look at him” as it’s so rare. Thanks for the info I’ll have a look through it with him xxxx

[Gaellass_UK in reply to Hiker_chick]

This just makes me realise how early my TPLL has been diagnosed. I’m only very weak and night sweats at present , I really feel for your partner right now 😔 . It’s so frightening that this “thing” is working away inside you . Hope they fine tune his treatment and get him well very soon. X

[2003UK Champion]

Hi, I am really glad that you have both found us. I cannot answer your question as I have another form of leukaemia. However I have noticed that it does not matter if you are the patient, family member, friend, work colleague or carer many of us share similar fears, thoughts, feelings, questions, symptoms and practicalities, we are all on this rollercoaster together.We are here to support each other and if you would like to talk the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444.

Take care of yourselves and stay safe.

[Gaellass_UK]

I’m also very recently diagnosed. I’m on watch and wait for now, as bloods are staying stable. There is a TPLL FB page that would be great, I’m in it too. Hope he’s doing well! 🙏

[Hiker_chick in reply to Gaellass_UK]

Hi thank you for your reply, he’s responding well to his treatment thanks. His WBC is down from 177 to 5 with only 6 treatments. Unfortunately his platelets have dropped but they are going to start looking at how to treat this. If you feel able to please keep in touch and let me know how you are doing xxxx