Jodie’s Triumph
JODIE AFTER INITIAL TREATMENT FOR NON-HODGKIN'S LYMPHOMA.
She has no hair here and has white tubes into her chest (as pictured) - called a 'Hickman's Catheter'.
Jodie fought the disease for a 2nd time after this and then MDS (requiring a bone marrow transplant) and currently still has a small catheter in her chest, called a 'Port-A-Cath'.
Jodie's girls here were about - Julia (6) and Anna (3).
Jodie is currently in remission but has had lingering health issues due to treatment and the disease.
We are hoping she will stay in remission forever.
ORIGINAL P.E.T.(CANCER) SCAN OCT/06.
CURRENT P.E.T. (CANCER) SCAN JUNE/10.
SEE BELOW FOR A LIST OF JODIES TREATMENTS
My story and subsequent health difficulties, have been an enormous challenge, but one I hope that will inspire and encourage you as you read on about my journey (jodiesjourney.com)
My grandmother (now passed) prayed with me in her Sydney kitchen when I was 13 years old. 20 years later - At 33 (January/05), I faced the largest challenge of my life, but I didn't yet realise it.
Here is my story: I had been getting occasional pain down my R arm and I had felt run down and tired for some time, but having a baby and a disabled daughter always seemed to account for this. (November/05) I found a large lump in my R breast. Concerned it was breast cancer, I arranged an immediate check at a specialist breast clinic. I was told it was just a reactive lymph node, due to infections and that there was 'nothing funny going on'. I had been catching more illness than ever before and it was assumed this was the reason for the enlarged nodes. In retrospect, we now know that my immune system was breaking down and I was not able to fight off infection. The enlargement of my nodes was part of the greater problem. The cycle continued in pursuit of a diagnosis: 11 months of searching seven doctors 21 doctors visits. I could get no assistance & no-one would listen to me. I continued working full-time, as I had no answers and people around me, started to question my symptoms.
One morning - at a ladies’ camp, I woke to find numbness and sciatica in my right leg. Finally, after a month of no sleep (one week of severe), terrible pain, and little relief, I said to my husband, If I still feel pain in the morning, I'm going to the ER for help. An ER senior doctor decided to do a CT scan 'Just in Case'. What was revealed would shock and distress the doctors, nurses, myself, and my family. I was immediately admitted, in complete shock. That night, a young doctor came to tell me & my family what was happening & what they had found. I will never forget her words: 'I have been chosen to tell you what we have found' (in other words, she got the short straw!). 'You have a mass in your back causing your pain and sciatica it’s eating into your spine and pushing into your sciatic nerve, hence your sciatica. We don't know what it is, or where it's come from, but we think it's probably malignant.
I remember pleading and crying with this woman to tell the other doctors to work hard to save my life, because (at the time of diagnosis) I was only 35 and had two small children to live for. My final diagnosis was follicular non-Hodgkin's Lymphoma, B-Cell, low-grade, stage 4. The very last stage. I was later to find out that I had Lymphoma eating into bones, nerves, and muscles in a large amount of my body. The pain in my R arm/shoulder was identified as bone pain from Lymphoma.
The process of treatment then began: seven weeks of hospital as an in-patient to start with (all up to 10 weeks inside during my initial treatment) biopsies, tests, MRIs, scans, x-rays, and then radiation and chemotherapy. Two weeks of emergency radiotherapy to save the function of my right leg six rounds of systemic chemotherapy and eight rounds of a special Lymphoma antibody nine months of wearing a Hickman’s catheter (for withdrawal of bloods/delivery of chemo). My hair fell out twice. I went through two stem cell harvests and much fatigue and heartache.
It seems amazing (looking back), that I was able to endure the 11 previous months working, looking after the kids and home, all while my body was being ravaged by the Lymphoma and I was desperately trying to get help.
Two years, post diagnosis and treatment, my former GP was disciplined by our state medical board for not performing to expected medical standards, set by our state board for all doctors. I may have been diagnosed sooner, had these standards been met. This was a long process and took me (on my own) 2 years of active discussions, investigations & consultation by the medical board, regarding my experiences and the difficulties I experienced in trying to get a diagnosis.
In the last several years, I have had over 70+ treatments of chemotherapy and other drugs, been in hospital thousands of hours, had a device (port-a-cath) and Hickman’s implanted in my chest and also been a blood and plasma receiver many times.
Due to the extensive state of my initial disease, I have been advised that I am medically incurable. As I continue to fight and remain positive, my aim is to believe for a long and disease-free life, regardless of prognosis. I went into remission in March 2007 and fell back out of remission in January 2008. My right leg function was saved again after relapse and my current status is remission. Much of my original recovery can be attributed to some big prayer and amazing hematologists at the Royal Brisbane Hospital (RBWH) and other medical teams. We have gathered opinions about my disease status and/or whether I am dealing with Progressive Radiotherapy scarring & lesion damage. My R leg & foot have progressively become weaker over the last year (Feb/10 - Feb/11). We now know we are dealing with progressive scaring.
My faith in God and the knowledge that I am assured of residence in His heaven, has given me the strength and the motivation to continue when it all seemed too much. I cling to the promise of Jeremiah 29:11 - For I know the plans I have for you says the Lord. And the vision of the 'woman with the issue of blood'.
I am marching on and doing more than just surviving, I am believing for a better future, healed and cured. I am now currently working on health reform and Lymphoma awareness to prevent others from enduring the nightmare I went through. I want to change the system so that people worldwide have safer GP visits and faster diagnoses. I have recently been talking to government officials to suggest ways to make our system better at detecting blood cancers, catching them earlier, and supporting carer’s in crisis. My hope is that many people will read my journey and understand the signs/symptoms of blood cancers and get motivated to support health reform. I want people from all backgrounds to be encouraged by my journey of faith and trust in a God who carried me through my pain and suffering and continues to do so. I enjoy every day and appreciate all that I have. It is a miracle that I have survived. I am now fighting a form of myelodysplastic syndrome (RCMD) as a result of all of my former chemotherapy and radiation and require a SCT (Stem Cell Transplant). For full details, go to my blog pages, as listed above.
THE FACTS
- The incidence of non-Hodgkin lymphoma among men in the United States increased by 0.4% per year from 1990 - 2005
- The incidence of non-Hodgkin lymphoma among women in the United States increased by 1.2% per year from 1990 - 2005
For young people with cancer (of all types) the stat's are equally shocking: young people with Cancer - originally diagnosed between the ages of 18 - 40 have only seen a 1% improved survival rate in the last 30 years worldwide. Compare this to pediatric and adult patients, who have seen a much higher rate in improved survival percentages. There are many reasons for this.
The rarity of all of Jodie's medical conditions are quite mind-blowing, here are the stats and examples (numbered statistics found @ the Cancer Council Queensland website):
- In the 2000's, the incidence of women (aged 35 - Jodie's age when she was first diagnosed) being newly diagnosed with Non-Hodgkin's Lymphoma was on average only 2 female patients per year out of all reported cancer cases in the state of Queensland (Population: 4.676 million in 2014).
- From 1982-2011, the incidence of women (of all ages) being newly diagnosed with Non-Hodgkin's Lymphoma was approx. 360 female patients per year out of all reported cancer cases in the state of Queensland. The incidence of this disease is the fastest growing of all cancers, but is very rarely seen in young people, it is known as a disease of older people/the elderly.
- Radiation Induced Neuropathy (or delayed damage/late stage toxicity) to nerves for patients who have had 10 or more sessions of 30GY [Grey] (The emergency amount of radiation sessions/the amount of radiation given to Jodie's S1 nerve in 2006) are not even measured due to it's virtual 'non-occurance' - most radiation patients (we were told by our top Radiation Oncologist in our state) can have 60GY or more and have no delayed damage/late stage toxicity whatsoever.
- There six types of MDS (Myelodysplastic Syndrome) - the overall incidence of this blood cancer, in terms of Australian population is extremely small, even smaller when induced/caused as a result of previous chemotherapy/radiation for other cancers (the reason for Jodie now requiring a STC - Stem Cell Transplant). MDS is relatively uncommon, with an incidence of between 4 and 5 per 100,000 of the population but in patients over the age of 60, this may increase to anything from 20 to 50 per 100,000 of the population. It is therefore one of the more common haematological disorders in the elderly.
THERE IS HOPE - AWARENESS, EDUCATION & RESEARCH INTO A CURE, IS THE KEY.
Signs And Symptoms Of Non-Hodgkin's Lymphoma.
JODIE'S CURRENT MEDICAL UPDATE
- May/2023 - Jodie and family decided to move from Brisbane to Toowoomba for a slower life, closer medical facilities and beautiful gardens & views.
- July/2018 - Jodie's GVHD continues to be an issue and sometimes can limit her 'quality of life'. However, she stays as active as possible and rests in between. Recently, Jodie went through two R foot stress fractures, due to her neuropathy. Avascular Necrosis (AVN) has also been discovered (in the early stages), due to high-dose steroids, after transplant, in 2015. The AVN is currently located in the R Femur ball of the hip socket. Investigations and discussions are ongoing and will be for the long term. A hip replacement may be required in the future.
- March/2017 - Jodie continues to follow the instructions of her doctors, with much medication and a monthly transfusion of human plasma.
- August/2016 - Jodie continues to fight GVHD in the Lungs and Eyes. She currently takes 52 medications a day.
- August 22nd/2015 - 8 months on from a Bone Marrow Transplant in late December/2014. Jodie has fought GVHD (rejection disease of Jodie's unrelated bone marrow donor - a 30 year old male from overseas) of the mouth, throat, skin, eyes and currently - the lungs. Jodie is fighting this and looking forward to full health, using medications and the advice of some of the best doctors in the world.
- July 8th/2014 - Jodie was diagnosed with secondary cancer called Myelodysplasia (MDS) -RCMD - an Allogeneic Stem Cell Transplant is now needed - full and updated details on: JODIES BLOG PAGE
- September/2013 - Jodie continues to be 'in remission' with no disease return. Her immune system was found to be lacking or suppressed in a certain line of her Lymphocyte T-cells (which protect the body from infectious bacteria, mainly located within the mucosal areas - sinus, nose, throat). Infectious diseases at Jodie's hospital re-immunized Jodie so that she does not constantly get infections (8 in 2011 and 6 in 2012). So far this year, Jodie has only had 2 infections. This has meant that she can now travel more and start looking for a minor employment role. Jodie's right leg continues to weaken and her calf muscle is constricting, a condition called Atrophy - due to Peripheral Neuropathy of her S1 nerve controlling the right leg. Essentially this is damage from radiotherapy and tumour scaring which cannot be fixed or changed. Jodie must be careful with physical activity and fall risks. The family is currently fundraising for a HYDROTHERAPY POOL/SPA to reduce pain and create more exercise opportunities for both Jodie & her daughter, Julia.
- February/2012 - Jodie had no in-patient admissions to hospital in 2011, wonderful!! Although, she regularly goes to hospital for outpatient appointments for her port-a-cath, bloods and Hematology checks. She also attends various other services, including Prosthetics for a new leg brace.
- June/2011 - Jodie is believed to be in active remission. However, she continues to suffer from progressive scarring to the S1 nerve, which presents itself as weakness & muscle wastage. Jodie is also monitored for any changes in her health and assisted medically for significant pain post chemo & due to her scarring. Regardless, Jodie is a happy person. making every effort to raise awareness for others who suffer.
- February/2011 - Stem Cell Transplant once again halted due to Neurology opinion - NEW 2nd Neurology opinion believes the problem is PROGRESSIVE RADIOTHERAPY SCARRING & LESION DAMAGE.
- August - November/2010 - Stem Cell Transplant was postponed at the 11th hour, late August. We opted to wait for more evidence on the next MRI, image taken 12 November/10 (waiting on results).
- August/2010 - Transfer to Princess Alexandra Hospital, under a new Lymphoma team.
- June 04/2010 - Fall due to footpath/building & R leg weakening again (0nly 2 weeks after first CYT LP). June 11/2010 7th LP.
- Mid-May/2010 - Started Lumber puncture chemo & Steroids to halt weakness/pain to R leg.
- Late February/Early March/2010 - 2 falls at home, indicated the beginning of pain in the S1/Sacrum & progressive R leg weakness. Admitted to hospital Late April/2010.
- Marrow testing returns a 'No Lymphoma or MDS (Myelodysplasia)' found in the sample. But - poor recovery (post chemo) of Granulopoiesis Cells (mainly Neutrophils), due to suspect bulk toxicities. This means some parts of my White Blood Cells have not recovered well post Chemotherapy.
- December 09 - Blood counts not recovering. 3rd NHL relapse suspected, marrow testing commenced.
- July 09 - Blood counts should have recovered.
- April 09 - Finished 2nd course of systemic chemotherapy, status: STABLE.
- January 09 - Commenced 2nd course of systemic chemotherapy.
- December 08 - Relapse Lesion now visable on S1 (Sciatic Nerve), through MRI. August 08/2nd Relapse of NHL confirmed, start immediate Mabthera therapy & injection chemotherapy into the spine. Become medically retired, leave work immediately. June 08/R Leg starts to weaken.
- January 08 - R Foot numb and toes - no movement. November 07/Return to work. March 07/Finish 1st course of systemic chemotherapy, status: REMISSION.
- September 06 - Original NHL Diagnosis through ER: leave work immediately.
- November 05 - Noticeable symptoms start to occur, 11-month search commences for medical assistance, medical negligence occurs, and Jodie's diagnosis is delayed.
Jodie's treatment list of Chemotherapies & related drugs:
GY = Grey (Measured/metered radiation).
CVP = C: Cytoxan - V: Vincristine - P: Prednisone.
CHOP = C: Cyclophosphamide - H: Doxorubicin - O: Vincristine - P: Prednisone.
R = Mabthera (Ritixamab).
MTX = Methotrexate.
F = Fludarabine. CYT = Cytarabine. INN = Azacitidine.
MEL = Melphalan. ATGAM = lymphocyte immune globulin.
INITIAL DISEASE DISCOVERED/DIAGNOSIS - LATE SEPTEMBER/2006.
RADIATION ONCOLOGY
10 x dosages of measured GY radiation to large tumour pressing on Sciatic Nerve.
CHEMOTHERAPIES AND RELATED DRUGS
2 x CVP (6 treatment dosages chemo & related).
2 x R (2 treatment dosages B-cell monoclonal antibody).
4 x CHOP (16 treatment dosages chemo & related).
4 x R (4 treatment dosages B-cell monoclonal antibody).
2 x R (2 treatment dosages B-cell monoclonal antibody).
REMISSION ACHIEVED - MARCH/2007.
1 x C massive dosage (1 Prep/Stem Cell Harvest).
6 x R (6 maintenance dosages B-cell monoclonal antibody).
RELAPSE - DISEASE S1 (SCIATIC NERVE) IDENTIFIED - AUGUST/2008.
5 x R (5 treatment dosages B-cell monoclonal antibody).
5 x MTX (5 Lumbar Puncture treatment chemo & related). (2 x ADDITIONAL LPs TO HARVEST CSF).
3 x F (3 treatment chemo & related).
DISEASE REDUCED IN S1 (SCIATIC NERVE) STATUS: STABLE - JUNE/2009.
Suspected RELAPSE - DISEASE S1 (SCIATIC NERVE) IDENTIFIED - MAY/2010.
1 x CYT (1 Lumbar Puncture treatment chemo & related).
1 x MTX (1 Lumbar Puncture treatment chemo & related).
(1 ADDITIONAL LP TO HARVEST CSF).
1 x MTX (1 Lumbar Puncture treatment chemo & related).
(Suspected relapse turned out to be progressive scarring to the S1 due to post radiotherapy/disease).
As a result, Jodie's R leg is currently becoming weaker with drop foot & muscle atrophy, however she uses a cane and a Leaf-Spring ATO splint for foot & leg support.
July 8th/2014 - 3rd incidence of cancer/2nd type of cancer Myelodysplasia (MDS) -RCMD.
14 x INN (Azacitidine/Vidaza - Subcutaneous Injections). Myelodysplasia Treatment: (August 2014, 7 days).
Searching for a Stem Cell Donor, in Australia & beyond.
In late 2014, two suitable donors were found: a 30 year old male and a 19 year old male, located overseas. The transplant team at the RBWH went with the 30 year old male. Admission for Stem Cell/Bone Marrow Transplant and conditioning chemotherapy commences:
Friday, 12th December 2014.
7 x FLU/MEL VUD ALLOGENEIC BONE MARROW TRANSPLANT.
(Fludarabine/Melphalan -VUD- 'Reduced Intensity Allogeneic Bone Marrow Transplant).
JODIE'S BONE MARROW TRANSPLANT TOOK PLACE ON Friday, 19th December/2014. 20th January/15 - Severe cases of GVHD (rejection disease) start - of skin, mouth, throat, eyes.
(28th January/15 - blind in both eyes for 2 weeks), 6 months post BMT: lung GVHD.
Mid February/15 - To stop current GVHD: 10 x ATGAM - light chemotherapy (lymphocyte immune globulin), derived with 50 mg of horse gamma globulin.
From mid February - August/2015, three CMV blood infections started, post BMT - the infection that first started Jodie's NHL in 2006.
30/03/15 - OUT OF THE DANGER ZONE - REACHED DAY100, POST BMT.
02/04/15 - Due to weak leg, fell and broke L (Distal Radius) wrist, in addition to 2 previous falls (break in tibula & fibula) in both L & R feet.
Total: 94 dosages of treatment.
PLUS: (lots of blood product) - 19 bags of Blood, 2 bags of Platelets and many, many infusions of human plasma, immunoglobulin (IVIG).
The immune system