Hi, I thought you’d be interested in some tests we’re undergoing on my wife’s tumour now via The Christie in Manchester. Heads up in advance, to my knowledge this isn’t available on the NHS. Only some insurance companies will fund the testing, many people have to fund raise and pay for the testing (cost about £5k for the testing, any treatment extra on top of that).
We recently attended a mid point scan/bloods review, 3 cycles into most recent treatment fully expecting one of two outcomes.
1. Current treatment working fine, continue for another 3 cycles to completion
2. Treatment not being effective, stop the treatment
We’d previously been told that this was the last ‘effective’ treatment available to her and so the usual scanxiety was even greater than usual but because of fluctuations in CA125 we were prepared for number 2 and moving into the next phase.
However, the onc told us about this other option, the Caris molecular profiling / testing. He was open and said it’s a bit of a long shot because our health insurance may or may not pay for the tests but he explained that some tissue from the original tumour would be sent off to Houston in America. They would run about 200 different tests and try to find molecular level similarities with other tumour types / effective treatments. Instead of looking only at treatment options usually considered for OC it would look at treatments used effectively for other types of cancer, bowel/lung etc. A report will be sent back advising of the results and potentially open up new treatment options for consideration. The insurance company gave the nod and tissue was sent off just before Christmas. We’re expecting to hear back by the end of the month. I’ll keep you posted on the outcome but thought this would be of interest anyway.
There’s a link below to the wehsite for anyone wanting to learn more.
I hope that you have had some good progress since your initial post.🤞🤞
My wife is going through a very similar treatment regimen
Was wondering how the testing went as we have been offered a similar genetic testing but have been told there is a less than 5% chance of it finding any targeted treatment options.
Timeline for my wife is below:
Sep 20 - Feb 21: Carbo/Taxol 6 cycles with debulking surgery
Feb 21 NED on PET scan but CA125 at 48
cA125 tracked between 45-50 and then PET scan Sep 21 picked up recurrence
Carbo and Doxy for three months but PET scan Dec 21 showed new growth so this treatment was deemed ineffective and disease was classed as platinum resistant and incurable - CA125 dropped to 42, which was lowest since diagnosis
PARP inhibitor Zejula 200mg for eight weeks, CA125 increased to 81 and Oncologist stopped this.
PET scan yesterday, new growth in pelvis, bowel and lymph nodes behind stomach
We’ve been offered Topotecan and Avastin weekly as next treatment and given a terminal diagnosis of 3-6 months without treatment. And prognosis of hospitalisation in the next 4-8 weeks according to oncologist.
If treatment works may get another 3-6 months.
Very tough to process and getting very little positive direction from oncologist around any decent quality of life periods.
May have a two week window as of today for some time away, otherwise life will revolve around infusions, scans and blood tests peppered with consultation and specialist visits. These all come with $$$$
If treatment works may get a 3-4 week window mid-year before restarting treatment.
Looking for options but seem to be running out of treatment.
Hi Lamets. This all sounds very familiar. It’s gruelling isn’t it. We get the report back and it showed up treatments that would be unlikely to be effective. I thought this could be useful to some people to avoid going down a treatment path that is not going to be effective. However, for that to work well they’d need to do these reports much earlier - just after diagnosis.
It opened up a couple of options for us, it showed that a drug called tamoxifen, which is usually used for breast cancer, might have some effect in slowing down development of the disease. At the minute my wife is on Topetecan and when that finishes she will switch onto tamoxifen. The topotecan has brought down CA125. After one cycle (5 treatments over 5 days) it reduced from 3000 to 2200, fairly significant.
If it’s available to you then I think the report is worth having because it helps the next choices you both make to be made on a more informed basis, important at this stage when every choice is critical to both quality of life and longevity.
We’re based in the UK. The oncologist sent off some tumour tissue from the original debunking surgery. It went off to Houston and we got the result back in about 3 weeks. It’s a fairly lengthy report. Our insurance company covered the cost but l think we were very lucky that they did. I think it cost about £5,000
Thankyou this sounds very positive and definitely worth the money if a suitable treatment is found.Please keep us updated when you get results back.Do you know if this can be organised via any hospital or only Christies?
I’m not sure but I’d assume it’s also available elsewhere 🤔 . It would be good to hear if others on here have heard about this. I know of a bowel cancel patient at Christie’s who had the profiling done and is now on treatment more commonly used for breast cancer. He had run out of options on bowel cancer treatments and is responding well to the breast treatment. Pioneering stuff 👏🏻
Thank you so much for that information. It's so kind of you to share it .I'm really interested to hear the results and really hope it opens up new treatments for your wife.All the very best to you both.
It's so encouraging to hear the doctors explore these possibilities, they bring us hope for sure. The Christie is a fantastic hospital. Wishing you well for this treatment for your wife. Take care Sue x
I had Caris testing on my original tumor. The print-out results are amazingly detailed with targeted options for treatments and therapies that would directly affect the specific gene mutations in the tumor. It will give you therapies that may be of benefit as well as a list of therapies that would have little or no benefit ( I wish I had the results before my 1st infusion of taxol, as the Caris report said it would not be of benefit for me. Unfortunately from that one treatment, I developed neuropathy, severe bone and nerve pain and loss of hair). I stopped chemo after that one treatment in 2018 and didn’t start another round until 2020 when I received carbo, Gemzar and avastin. 6 months later when my CA-125 rose again and a scan showed 4 lymph nodes involved, I had a biopsy on one of the nodes and it was sent to Perthera Labs (aka: Foundation One), which is another molecular testing lab and that analysis gave some additional options and recommendations. From the report I learned that I was HRD, which meant that a Parp inhibitor would be of benefit. I am now on the Capri trial and the CA-125 is decreasing and scans show that two of the 4 lymph nodes are becoming necrotic ( cancer cells dying, praise God!)
I highly recommend getting your tumor cells analyzed, and welcoming new targeted treatments, specific to your tumor type, not just the “cookie cutter” approach that it seems everyone with Ovarian Cancer gets as treatment. We’re all unique and so are our cancer cells. Best wishes for a comprehensive, enlightening report!
Thank you very much for sharing your experience. Couldn’t agree more re the cookie cutter approach. I guess one day, in years to come, profiling from the outset will be the norm. Avoid wasted time/energy/cost on treatments less likely to be effective and focus all efforts on those that are more likely to be
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