- 279
- 355 078
Lymphoma Australia
Australia
Приєднався 31 тра 2010
Our Mission:
To support Australians touched by lymphoma, raise awareness for this cancer, and support research for a cure.
Our Goals:
Provide education and support for individuals diagnosed with lymphoma, and for their support network
Provide Lymphoma Care Nurses to patients and carers for support, advice and a listening ear
Advocate for the best treatment and care for lymphoma patients
Promote further research and new treatments in lymphoma
Promote rapid access to new treatments
Ensure no one is on this journey alone.
To support Australians touched by lymphoma, raise awareness for this cancer, and support research for a cure.
Our Goals:
Provide education and support for individuals diagnosed with lymphoma, and for their support network
Provide Lymphoma Care Nurses to patients and carers for support, advice and a listening ear
Advocate for the best treatment and care for lymphoma patients
Promote further research and new treatments in lymphoma
Promote rapid access to new treatments
Ensure no one is on this journey alone.
Lymphoma Health Professional Conference 2024
Lymphoma Health Professional Conference 2024
Переглядів: 46
Відео
Lymphoma Patient Education Seminar Brisbane- March 2024
Переглядів 4344 місяці тому
Speaker One: 'Understanding CAR-T Cell Therapy' Haematologist Dr Andrea Henden Speaker Two: 'Finding your New Normal' Psychologist Dr Toni Lyndsay Speaker Three: 'Working Towards a Lymphoma Vaccination' Haematologist Dr Josh Tobin
Ty's Lymphoma Journey
Переглядів 3335 місяців тому
Ty was diagnosed with Diffuse Large B cell Lymphoma in early March of 2023. He is sharing his story to help raise awareness of the signs and symptoms of Lymphoma. Ty has also signed up to STEPS For Lymphoma this March 2024 to raise vital funds for those impacted by Lymphoma. YOU can join him here - fundraise.lymphoma.org.au/event/steps-for-lymphoma
Your Life Matters - Andrew's Story
Переглядів 777 місяців тому
Whether you are newly diagnosed or have undergone therapy, please help us improve treatment options for people with CLL / SLL. A government committee is considering whether to recommend a PBS listing for a new combination of tablets that would allow people with newly diagnosed CLL / SLL to be treated for a fixed period and then halt treatment. It’s important that Australians with CLL / SLL (and...
Your Life Matters - Rebecca's Story
Переглядів 667 місяців тому
Whether you are newly diagnosed or have undergone therapy, please help us improve treatment options for people with CLL / SLL. A government committee is considering whether to recommend a PBS listing for a new combination of tablets that would allow people with newly diagnosed CLL / SLL to be treated for a fixed period and then halt treatment. It’s important that Australians with CLL / SLL (and...
Your Life Matters - Professor Constantine Tam
Переглядів 1997 місяців тому
Whether you are newly diagnosed or have undergone therapy, please help us improve treatment options for people with CLL / SLL. A government committee is considering whether to recommend a PBS listing for a new combination of tablets that would allow people with newly diagnosed CLL / SLL to be treated for a fixed period and then halt treatment. It’s important that Australians with CLL / SLL (and...
Your Life Matters!
Переглядів 1247 місяців тому
Whether you are newly diagnosed or have undergone therapy, please help us improve treatment options for people with CLL / SLL. A government committee is considering whether to recommend a PBS listing for a new combination of tablets that would allow people with newly diagnosed CLL / SLL to be treated for a fixed period and then halt treatment. It’s important that Australians with CLL / SLL (and...
ALLG and Lymphoma Australia Patient Symposium
Переглядів 727 місяців тому
This video covers emotional health during and beyond treatment for lymphoma and information on clinical trials.
Lymphoma Australia a year in review
Переглядів 2067 місяців тому
THANK YOU FOR YOUR SUPPORT IN 2023 This video is a short summary of how we have helped support the Lymphoma community in 2023. What an extraordinary year it has been for the Lymphoma Australia team in 2023, and we are eager to share the remarkable milestones we've achieved. As we bid farewell to 2023, let's reflect on the profound impact we've made and the significant strides taken in supportin...
Grill'd Erina Lose the Locks for Lymphoma
Переглядів 729 місяців тому
The teams from Grill'd NSW restaurants are shaving and colouring their hair to help put lymphoma in the limelight! Crew from West Gosford, Erina and Tuggerah were the first group to brave their shave at Erina Fair Shopping Centre. Well done all!! To support the team, you can make a donation at: www.mycause.com.au/events/grilldlosethelocksforlymphoma
September Lymphoma Awareness Month 2023 - photo collage
Переглядів 949 місяців тому
Putting Lymphoma in the Limelight across Australia during September! Thank you to all who took part and made a difference for patients and families touched by lymphoma. Find out more at www.lymphoma.org.au
A message from Lauren this World Lymphoma Awareness Day
Переглядів 27510 місяців тому
A message from lymphoma patient Lauren, this World Lymphoma Awareness Day. To support patients like Lauren please visit golime.lymphoma.org.au/
A message from Tahli this World Lymphoma Awareness Day
Переглядів 17010 місяців тому
A message from lymphoma patient Tahli this World Lymphoma Awareness Day. To support patients like Tahli, please visit golime.lymphoma.org.au/
Meet Our Lymphoma Care Nurses
Переглядів 8410 місяців тому
Get to know each of our Lymphoma Care Nurses who are here to help and support those impacted by lymphoma. To speak with one of our Lymphoma Care Nurses for clinical support or advice, please call us during business hours AEST Monday - Friday or leave a message and we will get back to you. 1800 953 081 Please visit www.lymphoma.org.au for further information on the support services we provide to...
Talking to Children & Young People about Lymphoma- August 2023
Переглядів 10011 місяців тому
Talking to Children & Young People about Lymphoma- August 2023
Put Lymphoma In The Limelight This September
Переглядів 9011 місяців тому
Put Lymphoma In The Limelight This September
Working and Lymphoma with Selsus - August 2023
Переглядів 27611 місяців тому
Working and Lymphoma with Selsus - August 2023
Hodgkin Lymphoma with Lymphoma Australia and Dr Shane Gangatharan
Переглядів 39411 місяців тому
Hodgkin Lymphoma with Lymphoma Australia and Dr Shane Gangatharan
Adolescent and Young Adults - Under 40yrs - Long term follow up with Professor Kylie Mason
Переглядів 73Рік тому
Adolescent and Young Adults - Under 40yrs - Long term follow up with Professor Kylie Mason
CLL/ SLL webinar with Lymphoma Australia and Dr Sasanka Handunnetti
Переглядів 429Рік тому
CLL/ SLL webinar with Lymphoma Australia and Dr Sasanka Handunnetti
Lymphoma when under 40: Essentials when diagnosed, Social & Finances
Переглядів 75Рік тому
Lymphoma when under 40: Essentials when diagnosed, Social & Finances
Lymphoma in Adolescents and Young Adults (Under 40yrs) with Dr Orly Lavee
Переглядів 387Рік тому
Lymphoma in Adolescents and Young Adults (Under 40yrs) with Dr Orly Lavee
Venuja's experience with a TIVAD while in hospital
Переглядів 712Рік тому
Venuja's experience with a TIVAD while in hospital
Relapsed / Refractory Diffuse Large B-Cell Lymphoma (DLBCL) with Dr Gareth Gregory
Переглядів 3,1 тис.Рік тому
Relapsed / Refractory Diffuse Large B-Cell Lymphoma (DLBCL) with Dr Gareth Gregory
TAKE CHARGE: Do you feel lost within the health care service. Presented by Andrea Patten
Переглядів 293Рік тому
TAKE CHARGE: Do you feel lost within the health care service. Presented by Andrea Patten
TAKE CHARGE: Complementary and Alternative Medicines (CAMs). Presented by Dr Peter Smith
Переглядів 245Рік тому
TAKE CHARGE: Complementary and Alternative Medicines (CAMs). Presented by Dr Peter Smith
Thank you ❤.
I just got diagnosed with Hodgkin's. Up until the lump in my neck they insisted I had Eczema 🫠 definately speak up if ypu experience any of these symptoms!!
Thwnks
Dona best thanks for everything
My youngest brother shared his diagnosis with us yesterday. Although he is keeping a positive attitude, I know he’s scared. Fortunately I believe the doctors found it early. His wife is nervous too, but it’s my job to help them stay strong and have Faith that he will be okay. What treatments did you go through, if you don’t mind me asking. I wish you well. Thanks for sharing.
Hope your doing well and appreciate you sharing your knowledge. ❤😊
Would like to know how your doing today
Kim is going really well! She even took part in our Legs Out for Lymphoma walks this year. Thanks for checking in and if you need some support yourself, please phone our nurse line 1800 953 081
What a courageous and generous man. Well done in your journey to health. Thank you for sharing your story.
Thanks for this video. I also got DLBCL and had finished 6 chemos but still have the mediastinal mass.. It is good to hear that there is still a cure, but sadly it is not available here in the philippines..
What recommendations do after treatment?
Very clear and helpful presentation. Thank you very much.
Hats off to you courageous lady.Wish you to be fully recovered and life time happiness. ❤️
Thank you.
thanks for sharing! I have 3 lymph nodes swollen, Alcohol pain after 1 sip I get this burn and pain, but not just a lymph nodes, it goes to my neck, abdomen and low back. I have itchy feet at night-restless leg ? My PCP keeps telling me it's ok. So it's hard to find someone who just has/had the lymph node only sx. Thanks for sharing
Relapsed is a genuine problem trying to come,with right medicine is a challenge
Thanks for the video. It's taken two years to get a comment, so here goes. It should be pointed out that many patients go years without a correct diagnosis the most common being psoriasis or eczema. I didn't hear you mention methotrexate and was wondering if you used it with any of your patients.
Such a clear, calm exposition of this illness. Excellent
Thanks this is very informative and helpful. I'll wait in hope for bispecific antibodies to become accessible in Australia!
Thank you. Clear and great insights.
Nice clear exposition by the Prof - thank you! Would be good if there had been a recent update.
I like your positive attitude, including that after a week of each chemo session things feel normal
Just started chemo myself … thank you for your story it helps us a lot
But Pfiezer have admitted they never studied the vaccine for it's ability to stop transmission. It is not protective no matter how you slice it
So glad it worked. Did you have side affects while you were in the hospital for 10 days?
Exciting stuff! Any new updates?
Proud of you Mum.
Wonderful journey for you ! I’m in the same situation. My first treatment EPOCH-R didn’t eradicate the cancer completely. So they’re going to put me on CART-T treatment in six weeks.
Wishing you all the very best for your CAR T treatment
How are you now😢?
@@sousounina4295 Thank you for asking . The treatment has worked ,, the cancer is asleep ….. for now at least . Yup going on 12 months. But with DLBCL stage 4 triple hit cancer diagnosis ,, it can rear its monstrous head again anytime and anywhere. So I’m living with that fear constantly.
What percentage of patients suffer bad side affects?
Please read more about CAR T - including possible side effects - here: www.lymphoma.org.au/lymphoma/treatments/chimeric-antigen-receptor-car-t-cell-therapy/
Is there a T Cart for non- Hodgkin follicular lymphoma
Hi Adam - at this stage only if it is refractory and then transforms. Please give our nurse team a call for more information - 1800 953 081
I was diagnosed at the start of the pandemic. I had chemo around 18 months ago and it only left a few lumps in my stomach. I struggle with wrist and leg pains terribly. I'm only 46, was active but feel tired and fatigued. I see other people much older etc and they don't have the pain. They said I have Non Hodgkin follicular Lymphoma. Not curable but treatable. Does anybody else have/had these issues with the same diagnoses ? Or do you think I should be seeking a second opinion?
I've got leg and arm and hand pain. Much less when I refrain from cheese and bad oils as well as fat and sugar combined. Good luck!
Peripheral T is very aggressive at stage 3-4.
I had lymphoma and many years later they did a blood test and found that my immune system was messed, I have to have immunoglobin therapy now. They never caught in many years of me getting sick all the time and always thought I had hiv because my white cells were low so always gave me like hiv tests which always came back negative but never tested to see what was actually wrong with my immune system till later to see if it was genetic but it isnt and it was caused by lymphoma and the treatment I believe I have BEACOPP treatment and I know have Hyper IGM syndrome.
How did u find out it was lymphoma ?
Thanks….I am a 78 year old women DX’ed about three years ago with CTCL. I find the Australian perspective on many issues interesting…
Whoah! This was super informative! I start treatment July 1st and this is very helpful!
We are so pleased that this video has assisted you Daniella. All the very best - and please reach out if you need anything - 1800 953 081 or nurse@lymphoma.org.au
@@LymphomaAustralia Thank you! 😊🙏🏾
Great webinar, lots of useful info , thanks Lymphoma Australia and Erica
Thank you for the feedback David, we are glad it could help
Thanks for bringing this too us. Really appreciate the information.
Glad it was helpful! Please get in touch if you need more information or support Andrew
I've been batteling Non Hodgkin's Lymphoma for 15 years. I've been through chemo and radiation,CHOP, Rotuxamin treatment and gammon globbing. This type of cancer never stays in remission long and it effects the lymphatic system of the body,making it inoperable. It's by the grace of God that I am here.
Thanks for your comment Patricia. You have certainly undergone many different treatments. We wish you continued health
Thank you seem like the sharpest I've heard discuss this here rare diseases I'm hoping that I have arthritis n not this I've none that I have stolen lymph nodes in my area Pitts one one side of ribs my hematology Dr said it's normal becoss I had gotten bit from a horse and had blood poison so that's why they reacted then I did not get any aspirated well 7 years later I'm having troubles I go for cat scan 5 days from now pain I've had in my arms hands n shoulders for over a month gets worse at sundown chest is sore my bones wrist so sore I can hardly button my pants or tie my sneakers 👟 have to hope it's not and hope it's not too late fevers sets at night been having them for some time now the sweats the annoying pain and discomfort been around allmosta month now 🙏
Hi Mark - we suggest you see your GP to raise these concerns. If you need more help, please phone our nurses on 1800 953 081
Thank you Dr Dickinson, you are very informative and explained everything perfectly. Helped me to understand DLBC so much better
Glad it was helpful!
Very helpful. Thank you 😊
You’re welcome 😊
bone marrow biopsy of the spine is an outpatient procedure they use a TOM machine to make sure it's safely done. That's my experience. I was wide awake and many students were present to witness it and ask questions of me and the doctor doing it. They used a local for it. Afterwards you have to lay prone for two hours before they let you go home. Yes it was stage 4 diffuse large B cell lymphoma with a bone metastasis in the sacrum (5 cm- high grade) the tumor is the only reason i even went to the doctor as it was like sciatica but worse and getting worse by the day. It destroyed some of the bone and was eating it up before chemo stopped it.
then radiation and bisphosphonates infusions , hopefully this next ct scan will be completely clean and I can get my port out after that.
How are you now?
My mother received 6 cycles of R-CHOP chemotherapy. it was one sided (right side neck). The lymph nodes disappeared after 2-3 chemo cycles but it started coming back. after 4th-5th cycle it became visible and after 6th chemo it is highly aggressive (increasing day by day kind of). I am sharing her latest Biopsy report details here. Please suggest the best treatment. Will R-DHAP or R-GDP chemo followed by Bone Marrow Transplant will help? Thank you so much in advance. Diagnosis : GCB Type, Ki 80% RCHOP x 6 (June to Sept 2021) LYMPHOMA PANEL SPECIMEN Right cervical lymph node: DIAGNOSIS HIGH GRADE B CELL NHL. Suggest FISH studies to rule out double hit lymphoma. COMMENTS Section shows cores biopsies of lymph node showing diffuse effacement by sheets of lymphoid cells with hyperchromatic nuclei, prominent nucleoli and brisk mitotic activity. Immunohistochemistry shows the tumur cells are positive for CD79a, CD20, CD10, BCL6, MUM1 and are negative for bcl2, CD3,cyclin-D1, TdT. c-myc stains 80% of the cells. CD21 does not highlight dendritic cell meshwork. The Ki67 proliferation index is 95%. GROSS DESCRIPTION Received in formalin labelled with patient name, MR No. and "Right cervical lymph node" are six grey white tissue cores measuring from 0.7 to 1.3 cm in greatest dimension, submitted entirely in 1 cassette, HT/21/012777.
Hi Abinash - can you please contact us via email and we can then work through how best to support you. nurse@lymphoma.org.au
My Abdo MRI done this month Sept 2021 showed 3 large lymph nodes. The aortocaval measures 25 x 9mm axially and portohepatic one 17 x 13mm. Haematology numbers are all normal. Symptoms are loss of appetite only after I got to know this. Feeling tired and for the last 2 days feel slightly breathless upon staying standing up or walking for more than 15 minutes. I was told to contact the Westmeath hospital cancer clinic for appointment. The earliest I can get is in Jan 2022.. It might be too late. I am 58yrs old. I am still trying my best to get an urgent consultation with a haematologist/oncologist. Can someone help give me some direction. I always thought that this must be a priority consultation to get diagnosed and start treatment. You have to make your own arrangements. This being Australia, I thought that the GP's should be taking this responsibility to prioritise the appointment.
Absolutely brilliant, especially the question and answer session from about 1 hour in. Combines the reality of treating people with the science really well. He also talks about the business and political elements in geographical variations in standard of care.
I hope it's not in bad taste, but this yank was just wondering what came first, the Kangaroo, or the peanut butter?,but seriously folks, I really enjoyed the trip down memory lane,I will say a prayer for Ken.
very informative😀
Your story gives us all hope, Carol. Thank you for that. My mother has been diagnosed with non-Hodgkins Lymphoma 2 weeks ago and it was an extreme shock for me. I try not to show it, but it has struck me like lightning. I spend an hour on the phone with her every day and I'm planning on moving back with her as soon as she starts her treatment (probably next week) to support her and help her through this. I pray that she gets better and that the treatment won't be too harsh on her.
All thanks to Dr martins abul who helped me with a cure to get rid of my chronic leukemia, thank you sir for saving my life.
thank you, I leave in the Netherlands, but very helpful too
THANK YOU!! For posting this and to Dr. Dickinson. I am a newer nurse in California on a floor that frequently does CAR-T and this helped me understand things way better!