Welcome to the latest edition of the Patient Newsletter. In this months newsletter we will be sharing the following updates: - Steps For Lymphoma Recap
- Upcoming events
- The recording of the Brisbane education day
- Clinical Trials
- Fertility After Treatment
- Dermal Therapy Scar
Treatment
- Simon's Story
- Nurse Support Line
Thank you to all of those in our community for completing the
Global Patient Survey recently. Capturing the Australian experience is so important and gives all of you a voice on a global scale. Of the nearly, 9,000 survey responses globally, Australia contributed over 800 response! Great job everyone and thank you for taking the time 💚
Upcoming Lymphoma Australia events
💚 CLL Patient online Group Chat -- 24th April
💚 South Australia online Group Chat --3rd May
💚 Waldenstom's online Group Chat --2nd May
💚 Brisbane in person Group Chat --15th May
💚Gold Coast in person Group Chat-- 21st May
💚 Sydney Zetland in person Group Chat-- 29th May
💚 Melbourne in person Group Chat --21st June
💚 Melbourne in person education (Open for early registration)-- 27th July
For more information about these events, have a look at our events calendar. If you are having trouble registering for an event, please contact our nursing team 1800953081.
Patient education event recording
If you missed our recent patient seminar in Brisbane, please find a recording of the session below. The lineup included:
💚 Dr Andrea Henden- CAR-T cell therapy
💚Dr Toni Lindsay- Finding your new normal
💚Dr Josh Tobin- working towards a lymphoma vaccine If you are based in Melbourne, make sure you sign up to come to our upcoming Melbourne *in-person only education session HERE
Thank you to everyone that participated in Steps For Lymphoma 2024! We are so pleased to let you know that collectively, we STEPPED our way around ALL OF AUSTRALIA, and then some, with a total of 38,303,808 steps! We hope you will join us again next year as we aim to make the STEP challenge even bigger. We are even more thrilled to inform you that an incredible $91,901 was raised as part of the STEPS For Lymphoma Challenge in March 2024. These funds will go a long way to ensuring that every Australian impacted by Lymphoma has equal access to information, education, and support services. Thank you to everyone that participated and donated during this event. It has played a huge part in achieving this goal, we couldn’t have done it without you all! The countdown is on for STEPS For Lymphoma 2025 - will you join us again?
Clinical trials currently open for recruitment of participants are listed by cancer type. If you are interested in taking part in a clinical trial, please discuss with your doctor. Trial Name: ALLG NHL36 (TREBL-2)
EBV-associated lymphoma is a rare type of diffuse large B cell lymphoma (DLBCL) that is caused by the presence of the Epstein-Barr (EB) virus in patients. Although the EB virus is typically benign, in a small proportion of older patients it can cause development of cancerous lymphoma cells and EBV- associated lymphoma.
ALLG NHL36 TREBL-2 is the first clinical trial worldwide to offer a new treatment combination tailored to the unique features of this lymphoma, using the anti-cancer drug Tislelizumab and specialised cellular therapy.
It is hoped that this new treatment will stop the cancer and also restore the ability of the immune system to deal with the cancerous B-cells by destroying them. Eligibility criteria: - must be aged 45 years or older
- with EBV-associated diffuse large B cell lymphoma
- and eligible to receive the new therapy.
For more information on the ALLG NHL36 clinical trial, click HERE Trial Name: ALLG HD12 (CATER-HL)
Hodgkin lymphoma (HL) is a rare cancer that affects the lymphatic system. It occurs when developing lymphocytes (white blood cells) undergo a malignant change and multiply uncontrollably, causing tumours in lymph glands and other parts of the body.
The ALLG HD12 CATER-HL trial is testing a new combination of treatment for Hodgkin lymphoma in patients aged 61 years or over and includes treatment with anti-cancer drug Tislelizumab. This will be given to patients prior to chemotherapy, and then in combination with their chemotherapy
regimen.
It is hoped that this new treatment will result in a better prognosis for elderly patients with Hodgkin lymphoma, with less severe side effects.
Eligibility criteria: - over 61 years with Hodgkin lymphoma that has not yet been treated.
- currently open to patients in Queensland, Victoria, New South Wales and South Australia, with hospital sites opening in Tasmania and Western Australia in coming months.
For more information on the ALLG HD12 clinical trial, click HERE
Molly was diagnosed with Hodgkin lymphoma in December 2022. After 4 cycles of chemotherapy Molly is now 30 weeks pregnant.
Fertility After Treatment
Whatever stage you’re at in your lymphoma journey, if you’re thinking about starting a family, planning to grow your family or want to avoid a pregnancy all together you may be wondering how treatment could impact on your fertility. What is fertility?
Fertility is your ability to make a baby. Sex organs and hormones are required to produce ova (eggs) and sperm needed to make a baby. Sex hormones:
Sex hormones are chemicals we naturally produce to help our bodies develop, grow, and reproduce (make babies). These sex hormones include androgens, testosterone, oestrogen, and progesterone. Sex Organs:
Sex organs include the penis, scrotum, testes, vulva (vagina), uterus (womb) and ovaries. So how are these affected by treatment?
Depending on the type of treatment you receive your body may no longer produce enough of the hormones needed for your sperm or eggs to mature to a point that they are able to make a baby. Sex organs may have been damaged, removed or scarred during treatment meaning you are no longer able to produce sperm, eggs, or carry a baby in your womb. So, can I get (or get someone) pregnant after treatment?
Pregnancy after treatment is a possibility, however having treatment for lymphoma can make getting pregnant or getting someone else pregnant more difficult and for some not possible at all. There are fertility preservation measures that can be taken before starting and/or during treatment and tests that can be performed to check your fertility after treatment. Speak to your doctor about how your treatment may or may have affected your fertility and what options are available if you are wanting to have a baby. You may like to ask for a referral to see a fertility specialist. What if I want to avoid a pregnancy?
Ask your doctor to check your fertility to find out if you need to take precautions to prevent a pregnancy. There are many different contraceptive options, ask your doctor to explain the different options appropriate for your personal circumstances. For more information visit our web pages on this topic:
Fertility after treatment - Lymphoma Australia
Fertility - making babies - Lymphoma Australia Or call our Nurse Support Line on 1800 953 081
Dermal Therapy Scar Treatment
Fade scars at home with Dermal Therapy’s innovative Scar Treatment Silicone + Gel. Scars are a natural part of the body’s healing process, however, they can leave us feeling blemished and uncomfortable. The best way to reduce scarring after an injury or surgery is to incorporate an effective scar treatment early in the healing process.
Powered by Silicone+ technology, Dermal Therapy Scar Treatment Silicone+ Gel contains:
- A blend of silicones to effectively soften, flatten and fade scars
- Vitamin C & E to support skin regeneration + hydration
- A unique precision applicator
It also works on both new and old scars.
Meet Simon! I was diagnosed with low-grade Follicular Non-Hodgkin Lymphoma in May 2014 after inadvertently discovering a large lump in my groin. It was a shock especially after I had spent the previous couple of years losing weight and getting pretty fit - lots of running and cycling. In August 2014 I commenced six cycles of R-CHOP and was put into a “very good partial remission” by early December. It was during this time that I became involved with Lymphoma Australia, completing the final day of the Parliament2Opera bike ride from Canberra to Sydney. After completion of chemotherapy I commenced two years of maintenance Rituximab. I felt myself slowly relapsing from 2018 onwards but none of
my nodes were large enough to warrant treatment. In November 2022 a very large node appeared on my right shoulder. After a PET scan and core biopsy in December 2022 the decision was made to not treat, however in May 2023 that decision was revised to planning to treat with Bendamustine-Rituximab. A further core biopsy was completed in July 2023 and it was determined that the node on my shoulder had areas of grade 3b disease. I was referred to another hospital for a second opinion and I received the dreaded news that I would likely need an autologous stem cell transplant. At this point I decided to call the Lymphoma Australia nurse support line because I needed to speak to someone who knew what I was up for at a practical level. They were knowledgeable, compassionate and reassuring. I commenced R-DHAOx chemotherapy in September 2023 and had three cycles. I had a number of conversations with the Lymphoma Australia nurse's through my treatment and received practical advice on managing side-effects and support.
I was hospitalised three times during my treatment due to issues caused by side-effects and was in communication with the nurse line often. Practical suggestions were made on things that could help make me more comfortable. Unfortunately my transplant occurred just before Christmas so for the 13 days that I spent in hospital I had no access to any support services beyond the nurses and doctors who were rostered on to the ward. This was an extremely difficult time for me and one that I won’t forget as it really was one of the worst experiences of my life. I’ve been advised that I had a “complete metabolic response” to my treatment and can get on with life. I will continue to be involved with Lymphoma Australia as I’m appreciative of the support that
they have provided.
Everyone’s lymphoma and CLL experience is different. Our Lymphoma Care Nurses are here to help patients and families navigate the health system, access the most up to date information about lymphoma and to take the fear of the unknown out of the lymphoma journey. Please call our nurse on 1800 953 081 You can email us on nurse@lymphoma.org.au
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