Treatment for cll

Hi Springer the selection of treatment depends on how your CLL is presenting.

I have lived with and been treated for 2 rare types of T-Cell Lymphomas for over 25 years and I have had various treatment…… but people with the same condition had different treatments…… there is no one size fits all.

The selection of treatment is based on what your clinical team think is best for you…. based on your overall health and fitness. The test results on your CLL cellS. Your previous treatments.

You need to talk this through with your team. 

Thankyou for replying. They said ibritinib is a tablet I could take every day. Do you have any knowledge or advice regarding this.

Good morning Springer….

I have had over 800hrs of chemo therapy over my main treatment years between Dec 2013 and Oct 2015 all through IV.

But I have also had various oral/tablet treatments in the form of immunotherapy and targeted therapy and on the whole had no real issues…… I have not had Ibritinib.

The most important things is to ensure you are taking the meds ‘exactly’ as recommended on the prescription box and accompanying information.

If it says take it with or after food then ensure you do…… on one occasion I forget to take my immunotherapy meds as I should so a few hours later I took it but not with food…… I regretted this I was rather sick for a few hours.

Always around to chat. 

I really do appreciate you replying. Hopefully some other members will be able to pass information on the tablets if they have knowledge or experience. Thanks again 

Hi again….

Although CLL has the word ‘Leukaemia’ in it, in Heamatology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.

I would recommend that you check out Lymphoma Action.

Lymphoma Action is the only UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.

Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.

Their Closed FB group alone has over 6200 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.

They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

I am always around to help more, just to chat and to answer questions.