• What have we been up to?

• LOFL events

• Scrub tops available to order for nurses

• Clinical Trials

• Nursing Education

• Health Professional Conference

• Dermal partnership

• This month’s feature article is “Let’s talk about sex” by Lymphoma nurse Emma

What have we been up to?

These last few months have been very busy for our nursing team, with many educational inservices, patient education and support sessions and lots of hospital visits. I have been over in Perth, Lisa has been in Darwin, Emma has been in regional Victoria, Nicole has been in regional NSW visiting nurses in Bathurst and Orange and Wendy has been holding down the fort back in QLD pumping out lots of new resources. We have also recently hosted nursing networking and education dinners in Perth, Darwin and Sydney with an upcoming dinner in Melbourne. 

Legs Out for Lymphoma event in Melbourne

Legs out for Lymphoma is officially ending at the end of March! However, we have a final event in Melbourne. These events are for fundraising and awareness so if you are keen, please come along and we can show our support for everyone battling lymphoma. 

Melbourne - Saturday 29th April 2023 2-5pm (approx 3.8-7.6km)

Anything you can do to support us, can go a long way to supporting patients and providing nursing education. We are heavily dependent upon our amazing lymphoma community to help us fundraise to ensure we can sustain the support and services we provide!

Registration is free - sign up and find out all the details at www.legsout.org.au or click the links above.

Scrub tops available to order for nurses

Lymphoma Australia now has scrub tops available for purchase. These can be purchased with hospital details on them in lots of 20 or they can be purchased individually without hospital details on the shirt. 
The scrubs shirts are made of a breathable fabric, that has some stretch and has 3 handy pockets. 
For more information and to order please contact support@lymphoma.org.au. Scrub shirts are $60 each and we suggest you size up.

Clinical Trials

Clinical trials can be overwhelming to try and understand, and we are health professionals! A lot of the time, patients have the perception they are “guinea pigs” on clinical trials.  However, clinical trials offer the potential for cutting-edge treatments, improved outcomes and can provide patients with access to novel therapies not yet widely available in Australia. By highlighting ongoing clinical trials in lymphoma, patients and their loved ones can learn about promising new approaches to treatment, potential side effects and risks, and how to participate in a trial if they are interested. 

So, with that in mind, knowing where to get accurate information when you are asked, is important. ClinTrial Refer is the answer!! ClinTrial Refer is available as an app on your phone or you can hop on their website and search for a specific subtype, and you will find all the available clinical trials, the current trial locations, a brief description of the trial and the main contacts.

Spotlight on a clinical trial- EPCORE FL-1

Follicular lymphoma is the most common slow growing lymphoma and because of this, it is often found at an advanced stage. Unfortunately, there is no cure for follicular lymphoma and often people need many different types of treatment to manage it and keep it under control.

This study includes a drug called epcoritamab in combination with lenalidomide and rituximab to treat patients who have relapsed or have refractory follicular lymphoma. This means the lymphoma has come back after having treatment previously. There are two arms to this study. This means patients are assigned to receive either (Arm 1) rituximab and lenalidomide or (Arm 2) rituximab, lenalidomide and epcoritamab.

INTERSECTIONALITY IN MEDICINE WITH A/PROFESSOR NADA HAMAD

DATE: 18 April 2023
TIME: 10am QLD/NSW/VIC time, 7am WA time***
Note the change in session time.

Have you missed any of our education sessions?

Already in 2023, Lymphoma Australia has hosted multiple education sessions including CAR-T for nurses, ASH wrap up and a patient webinar on Follicular Lymphoma. If you have missed these webinars, they are always available on our website under the health professional tab or on our YouTube Channel.
There are many more sessions planned throughout the year, so sign up now and prioritise your education!

CLICK HERE TO VIEW CALENDAR 

This year’s health professional conference is fast approaching and there is just over a month left until early bird registration ends. Tickets are also selling out quickly!
We are getting very close to locking in the final agenda, but here is a sneak peek at the updated agenda. 
**Please note this agenda is subject to change and isn’t final**

• We will be announcing the theme of the dinner event very soon. So, keep an eye out on your emails…. 
• If you have registered to come to the conference but haven’t booked your tickets to the Soiree dinner event on Friday night after the conference, it’s not too late. You can book this through the conference link HERE.  What is included? 3 hour drinks package, dinner, dessert, prizes and more!

Dermal Therapy partnership

We are proud to announce we have partnered with Dermal Therapy! Dermal Therapy have supplied our patient community with award winning sensitive skin care in our Patient Treatment packs. They are supporting the nurses caring for lymphoma patients by providing specialised skin products distributed through our hospital visits.  

Dermal Therapy is an Australian skincare brand with an extensive range of affordable and effective products, delivering proven results against all skin concerns from dryness and sensitivity to Eczema and Psoriasis. The range is recommended by dermatologists nationally and is made with the highest quality ingredients.  You can find Dermal Therapy products in most major retailers ie. Woolworths, Coles & Chemist Warehouse, as well as most other pharmacies. 

We want to thank them for their generous donations to our patients and nurses!

If you would like to learn more about Dermal Therapy's amazing products or go in the draw to win a hamper, CLICK HERE 

Let's talk about sex!

Sexuality is the way we express ourselves sexually from the way we feel about ourselves, the way we dress, the way we move, the way we have sex and who we have sex with. 

Sex is the physical way in which we express our sexuality. 

Intimacy is the physical and/or emotional closeness to another person. Intimacy can be expressed in different ways and is not just physical.  

Sexuality, intimacy, and sexual health is an integral part of who we are whether we are in a relationship or single. Majority of people living with lymphoma report changes in sexuality and intimacy. 

HOW DOES LYMPHOMA IMPACT SEXUALITY?

Lymphoma can cause a physical, psychological, and social imbalance which impacts on sexuality and intimacy.  Some physical changes may include:  

• low oestrogen levels 
• erectile dysfunction 
• vaginal dryness 
• pain  
• nausea and vomiting 
• nerve damage 
• skin sensitivity 
• sleeping problems 
•  fertility issues 
•  orgasmic difficulties 

It is also very important to educate patients that treatment which leads to immune deficiency can cause a re-emergence of previous sexually transmitted infections such as genital warts and herpes. 

WHAT CAUSES THIS IMPACT?

All cancer treatment modalities including chemotherapy, radiotherapy, surgery, hormone therapies, immunotherapy, targeted therapies, and supportive medications may lead to a decrease in libido and arousal, affect a patient’s ability to orgasm and decrease their desire for physical and emotional intimacy. Some side effects from treatment such as weight loss/gain or hair loss can change how a patient feels about themselves. 

WHAT CAN I DO?

Whilst majority of individuals living with lymphoma experience these changes most will not seek advice from their healthcare professionals and majority of healthcare professionals avoid talking to patients about these side effects. Just start the conversation! These changes are as important as any other side effect and can have a negative impact on overall quality of life. All healthcare professionals should be able to assist patients with their questions and concerns regarding sexual health, sexuality and intimacy or at least be able to direct them where to seek further advice depending on their concerns. 
 
It is hard to predict how lymphoma and its treatments may affect a patient’s sexuality and intimacy and for how long. For some it is a short-term disruption but for others it can mean needing to adapt long-term. It is important to encourage patients to focus on how they CAN be sexual and intimate rather than focusing on trying to get back to how everything was before.  

Some suggestions that may assist your patient in adapting to their ‘new normal’ may include: 

• Allowing themselves to grieve the loss of familiar sexuality and sexual response.  
• Encouraging them to talk openly about sex, sexuality and intimacy with their partner or someone they trust 
• Investigate use of sexual aids - vibrators, dildos, lubricants  
• Focusing on pleasure not performance 
• Considering pain relief and positioning  
• Creating a relaxing environment (meditation and relaxation techniques may help) 
• Exploring sexuality on their own through self-touch and masturbation

WHO CAN I REFER MY PATIENT TO?

Depending on your patients’ questions/concerns some common referrals may include: 

• Psychologists and counsellors  
• Sexual health nurses  
• Certified sex therapists/ sexologists 
• Physiotherapists  
• Gynaecologists  
• Urologists  
• Endocrinologists  
• Fertility specialists  
• Pelvic floor therapists  
• Oncology social workers  

Where can I go for more information/ education? 

Thrive Rehab: Thrive Rehab | Australia | Occupational Therapy + Sexual Health + Intimacy 
Peter Mac: Sex and Intimacy | Peter MacCallum Cancer Centre 
Eviq: https://education.eviq.org.au/courses/clinical-and-community-practice/psychosexual-care-of-women-affected-by-gynaecologi  
Cancer Council Booklet: Sexuality, Intimacy and Cancer 
Sex & Lymphoma webinar with sexologist Chantel Otten: https://youtu.be/l_8aJXaIof0  
Sexuality & Lymphoma webinar with Sexual Health Nurse Simone Sheridan: https://youtu.be/Zm2DW0OKUIE