About Lymphoma

Aggressive Lymphoma Roadmap

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Being diagnosed with an aggressive lymphoma can be scary. And you may need to make a lot of very important decisions quickly. This can be really stressful when don’t know what to expect or even….when you don’t know what you don’t know.

This roadmap has been written with you in mind. To guide you right from the start of your diagnosis and through every step of the way. It will:

  • Explain what may be ahead, and the options you may be offered.
  • Help you find the right information at the right time to get the information and support you need.
  • Give you the information you need to confidently talk to your doctors and healthcare team.
  • Prompt you with some questions you can ask your doctor.

We hope this booklet helps. Don’t try to memorise the information, but bookmark this page or download the booklet so you can refer to it later. If you have more questions, or would like to chat with one of our nurses, you can call them on 1800 953 081 Monday – Friday 9am – 4:30pm Brisbane time.

Flipbook - Aggressive Lymphoma Roadmap

How to use the Flipbook

Make bigger

To view this in a larger screen click on the toolbar above the book on the symbol that looks like 4 little arrows pointing to each corner of a square.

See the image with icon circled in red for which symbol to click.

Once it opens in the full screen you can move back and forth by clicking on the arrows the left and right of the pages.

Image of tool bar with a red circle around a symbol of 4 arrows pointing to each corner in the shape of a square showing which button to click on to enlarge the booklet.
Download booklet

If you would like to download your own copy to keep on your compuiter, or print, click on the 3 dots on the toolbar above the book. After you click on the dots click on Download PDF File.

See the image with the blue circles for which symbol to click.

Image of toolbox with blue circel around 3 dots to the right of the toolbox to show where to click to download roadmap
More information

Throughout the booklet you will see some words in blue and underlined. Click on those blue words to open a new window with more information on that topic.

Summary

Being diagnosed with an aggressive lymphoma can be scary and stressful. Knowing what to expect can help you feel more prepared and confident. The Aggressive Lymphoma Roadmap can help you understand what to expect, and build the confidence to talk to your doctor and nurses, and ask questions to get the information you need.

You are not alone. We are here for you every step of the way. If you would like to chat to one of our nurses, you can call them on 1800 953 081. If they don’t answer, leave a message and they will call you back as soon as they can.

For more info see
Get to know our Lymphoma Care Nurses by clicking here

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.

Useful Definitions

  • Refractory: This means the lymphoma does not get better with treatment. The treatment didn’t work as hoped.
  • Relapsed: This means the lymphoma came back after being gone for a while after treatment.
  • 2nd line treatment: This is the second treatment you get if the first one didn’t work (refractory) or if the lymphoma comes back (relapse).
  • 3rd line treatment: This is the third treatment you get if the second one didn’t work or the lymphoma comes back again.
  • Approved: Available in Australia and listed by the Therapeutics Goods Administration (TGA).
  • Funded: Costs are covered for Australian citizens. This means if you have a Medicare card, you shouldn’t have to pay for the treatment.[WO7]

You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.

For more information on CAR T-cells and T-cell lymphoma click here. 

Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.