General Comments / Chat, page-6840

[please respect my wishes - questions about how I am going - although with best intentions can be exhausting to answer - so please don’t ask]

Several people have been aware of my challenging cancer journey. I have been reluctant to share. I feel that aspects of my journey are important to share - since awareness of precision oncology/drug screening approaches may help others for things they may be able to pursue (after their own research and advice from their doctors) if they are having a challenging time in terms of their cancer response to drug treatment.

I have been fighting an aggressive cancer for over 12 months. My cancer has now failed two lines of drug treatment ( both based on immunotherapy ). I need to move onto other drugs.

The round of chemotherapy I will start soon is guided by some very positive results from a commercial drug sensitivity screen of my tumour. Oncologists wouldn’t have otherwise been aware of this chemotherapy option for me or offered it to me. The results and hence evidence in my tumour samples from the drug sensitivity screen has allowed me to pursue off-label use of certain chemo drugs.

There are a number of other chemotherapy options I may also be able to pursue as future options which would also be guided by the drug sensitivity screening.

Surgery I had late last year enabled me to organise with support of Medical Oncologist and the Surgeon’s team for a sample of my aggressive tumour to be sent to United States for screening against 42 chemo drugs and targeted agents. My tumour samples responded to 26 of the drugs, a small number of these exceptionally.

I pursued this screening because I remembered an old study in 1980s where Bisantrene was in a drug sensitivity screen. To increase my drug treatment options I pondered if conceptually (using more modern methods) this type of approach was available for me.

https://pubmed.ncbi.nlm.nih.gov/7307232/

There are a number of services that do a modern form of this commercially. I first e-mailed 3 researchers in Australia to see if they knew anyone doing this in Australia commercially.

One of the three eventually told me about the below service in the United States, which I ultimately pursued ( there are other services, some are less sophisticated).



https://senginemedicine.com

Some important things about this:

1. I know my cancer samples well responded in-vitro (in the lab) to certain drugs
2. I know there is a good (although not certain) chance my cancer will respond to the chemo drugs if administered to me. This gives me more confidence to try the treatment whist enduring the side effects.
3. Failed cancer drugs cause a delay in moving onto treatments that work. Each failed line of treatment also adds layers of side effects that may be long term (which has happened to me).
4. The mental boost of something positive and hope.

I've also had genomic sequencing of my tumour some time ago. This provided interesting info but I think oncologists prefer to stick to standard of care. A drug sensivity screen is to me a better approach as it tells me which drugs actually work (at least in the lab) for samples of my cancer.

My fight is challenging and exhausting. I have had so much in the way of doctor/gp/oncologist/other specialist appointments, regular blood tests, regular treatment, a large number of scans (CT, PET, MRI and ultrasounds), challenging surgery / recovery, unexpected hospital stays (including in ICU), clinic treatments for wound care, lengthy schedule of radiotherapy, fatigue, increasing pain, lots of confusing/burdensome medical paperwork.