Jodie’s Story – Stage 4 Follicular Lymphoma

I had felt run down and tired for some time, but having baby and a disabled daughter, always seemed to account for this.  

In November, 2005, I found a large lump in my right breast.  Concerned it was breast cancer, I arranged an immediate check to a specialist breast clinic.  I was told it was just a ‘reactive lymph node’, due to infections.  I had been catching more illness than ever before, and it was assumed that 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 a part of the greater problem.  And the cycle continued, in the end of 11 months of searching, 7 doctors, 21 doctor visits and no assistance. 

One morning at a ladies church camp, I awoke to find numbness and sciatica in my right leg.  Finally,  after a week of no sleep, 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’.  A senior doctor finally performed a CAT scan.  What was revealed would shock and distress the doctors, nurses and myself and my family.  That night, an ER doctor came to tell myself and Greg (my husband) 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 that is causing your pain and sciatica’, ‘it is eating into your spine and pushing into your sciatic nerve, hence your sciatica’, ‘We don’t know what it is or where it has come from, but we think it’s probably malignant’.

I remember pleading with this woman to please tell all of the other doctors to work hard to save my life, because I was only 35 and had 2 small children to live for.  My final diagnosis, Follicular non-Hodgkin Lymphoma, B-Cell, low-grade, stage 4. The very last stage.

Now began the process, 7 weeks of hospital as an in-patient to start with, all up 10 weeks inside.  Biopsies, tests, MRI’s, scans, x-ray’s and then the treatment. 2 weeks of emergency radiotherapy to save the function of my right leg.  6 rounds of chemo and 8 rounds of Mabthera, 9 months of wearing a Hickman’s catheter (for withdrawal of bloods/delivery of chemo), my hair fell out twice, 2 stem cell harvests and much fatigue and heartache.

It seems amazing that that I was able to endure the 11 previous months working, looking after the kids and home, all whilst my body was being ravaged by the cancer and I was desperately trying to get help.

My aim is to believe for a long and disease free life, regardless of prognosis.  I am now in remission (since March 2007). Due to the extensive state of my disease, I was advised that I am ‘medically incurable’.  My right leg was saved.  I am remaining positive and getting on with life, kids and family.   Much of my recovery and remission can be attributed to some amazing hematologist’s at the RBWH in Brisbane.  My faith in God and the knowledge that I will be in His heaven, past this life, gave 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….). 

Despite the prognosis, I am marching on and doing more than just surviving, I am believing for a better future, free of any illness, completely healed and cured.

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.

Useful Definitions

  • Refractory: This means the lymphoma does not get better with treatment. The treatment didn’t work as hoped.
  • Relapsed: This means the lymphoma came back after being gone for a while after treatment.
  • 2nd line treatment: This is the second treatment you get if the first one didn’t work (refractory) or if the lymphoma comes back (relapse).
  • 3rd line treatment: This is the third treatment you get if the second one didn’t work or the lymphoma comes back again.
  • Approved: Available in Australia and listed by the Therapeutics Goods Administration (TGA).
  • Funded: Costs are covered for Australian citizens. This means if you have a Medicare card, you shouldn’t have to pay for the treatment.[WO7]

You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.

For more information on CAR T-cells and T-cell lymphoma click here. 

Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.