Non Hodgkins Lymphoma

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I am aged 59 year old and diagnosed a year ago with non Hodgkin’s lymphoma. have been on watch and wait but after 1 year I have been advised by my oncologist that I probably will need to start treatment soon for my CLL.

The 2 treatments I have been offered is firstly “Acalabrutinib”which is a long term treatment having to take 2 tablets daily. I have been told one side effect can be heart problems. My white cell count is 81, my haemoglobin is 114 and my platelets are 54.

The second treatment is “Obinutuzumab” which is a monoclonal antibodies and would be given intravenous for 3 weeks plus Ventroclax tablets for 12 months. Then the hope is that I would go into remission. There is a chance of developing skin cancer.

My questions are:

Which treatment would you choose if you had NHL or CLL?

Because both are relatively new drugs and not much data on long term side effects, what are the survival rates, how long can I expect to live after treatment.?

Is there information on how patients respond to these drugs and how bad are the side effects?

What is the follow up treatment if the cancer comes back after a period of remission?

I would be grateful for your judgement on which treatment is best with least risk.

Kathryn- Macmillan over 2 years ago

Hi Celia

Thanks for contacting Macmillan Cancer Support and welcome to the online community.

Making treatment decisions is always difficult and you need to consider what are the most important things for you as an individual.

Acalabrutinib was approved by the National institute for Health and Care Excellence (NICE) in March 2021, large clinical trials have shown that it significantly improves the length of time people with CLL live without disease progression compared to other commonly used treatments. In between 1 and 10 out of every 100 people (between 1 and 10%) can have a change in their heart rhythm, this is therefore classed as an occasional side effect. Skin cancer with Acalabrutinib is listed as a common side effect. Further information about Acalabrutinib can be found here.

Further information about Obinutuzumab can be found here. It lists skin cancer among the occasional side effects.

I would advise that you get in contact with your nurse specialist or consultant to discuss what your individual risk of side effects and what the expected outcome of treatment would be. This will help you to make the right decision for you.

If your CLL was to relapse further treatment will depend on the treatment you have had before, how well you responded to your previous treatment and how that treatment affected you. It is difficult to say which specific drugs may be given as new drug therapies are under development all the time, you could also be offered a chance to take part in a clinical trial.

You may find it helpful to speak to people who have been through or are going through a similar experience to you and be interested in joining the Non-Hodgkin lymphoma forum on our online community.

Best wishes,

Kathryn

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

 Ref LZD/ KR

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Non Hodgkins Lymphoma