My partner has recently been diagnosed with CLL (he is 67 years of age)and would like to have heard of anyone else with the same condition.
Maybe treatments they have received and the outcome, We have heard of a treatment named Car T cell therapy.
He is due to have a bone marrow biopsy soon. Anyone else had that, if so what does it tell us ?
I,d be grateful for any positive feedback.
Thank you
Hi Bertieboots and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I appreciate the challenges of this journey well.
This is going to sound very confusing but CLL and indeed small lymphocytic lymphoma (SLL) are different forms of the same illness. Haematologists group these together as a type of slow-growing (low-grade or indolent) Non-Hodgkin lymphoma …… yes very confusing.
I have talked with many people who have a CLL diagnosis over the years who have never needed treatment. Low-grade or indolent blood cancers tend to grow slowly so there is no need to treat as treatment is saved for a point where it will make a difference.
I have had multiple bone marrow biopsies over my years. This is part of the Diagnosis and staging process used to check to see if the CLL is in the bone marrow. The process is on the whole painless apart from the initial sting of the needle to numb the area and some pushing.
It is important to understand that when it comes to blood cancers staging is seen in a different light compared to sold tumour cancers like liver, lung, breast, skin….. where a stage 4 diagnosis is a poor prognosis….. in blood cancer it’s not. Staging is used to identify where the cancer is, when to test, what to treat with and for how long.
CAR-T is a relatively new treatment but at the moment is is only approved for a small number of different blood cancers… not CLL at the moment but there are different treatments depending on where his CLL presentation is at. You will find some good information about treatment in this link Treatment
You need to get as much information about your husbands presentation so this link Questions to ask your medical team about Lymphoma will help you get a notebook ready with the questions you want ask.
At this point I always highlight the Lymphoma Action website. The Bold link above are taken for the site.
Lymphoma Action is the UKs only Lymphoma Specific Charity ….. that includes CLL and SLL who have lots of good reliable information, videos…..
They also run regular Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
I have given you a lot of information so do come back with your questions and I will help as best as I can.
