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.
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!!
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.
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
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..
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
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.
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.
@@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.
Please read more about CAR T - including possible side effects - here: www.lymphoma.org.au/lymphoma/treatments/chimeric-antigen-receptor-car-t-cell-therapy/
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 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.
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
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.
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 🙏
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.
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.
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.
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.
