My longtime partner was originally Stage 3c high grade Ovarian in late 2017. Since then, it has been major debulking with 6 months of chemo. And then minor debulking surgery (a couple spots) in 2020 followed by less frequent chemo and maintenance (Lynparza)
This marks the 2nd re-occurrence (2022 ... or 3rd occurrence) and carbo has just failed.
We've been through this for a long time now, and prepared for it, but I have one question.
The next line of drugs/trials, which includes Taxol, basically the stats show that complete response/remission is 'unlikely'. That partial response is the best scenario.
Each of the previous times, the debulking itself bought her a complete response/remission and the chemo was more of 'maintenance' until recurrence. It's been all or nothing.
So, my question is really ... what is a partial response? Does it mean the tumors shrink and then 'freeze' and you can stop treatment until the scans show they grow again? Or does it mean they shrink until they don't anymore and you immediately have to go onto another regimen to keep them from growing again?
Obviously, I hope it's the former, as that would be a 'mini-remission'. I didn't get a chance to ask the oncologist, such busy people.
Thanks,
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jontaejones
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Hi ,I was diagnosed with serous high grade stage 3 in 2019 ,had 6 rounds of carbo and taxol ,debulking then 3 more carbo /taxol ,in remission for 9 months , 6 cycles of carbo/ taxol ,partial response ,was told that was best case scenario, parp didn't work for me so on to 6 cycles of caelyx/ carbo ( 4th line ) ,I've had a break after each line of treatment ,my last chemo was March and it's been stable and my ca125 stable at 14 ,now awaiting results of my CT scan that I had this week ,I'm expecting to start chemo again soon , hope my story helps ,wishing your partner well .
I think it varies. I am on 4 th line chemo since diagnosis Sep 2019. I had NED for short period after initial treatment, back on chemo, carbo and caelyx Feb/March 2021, finished August. Then bowel blockage end of Nov 2021, weekly Taxol, well 3 on 1 off for 18 weeks. Then about 8 weeks before restarting on Carbo / Gemzar.So for me not long gaps really, however your partner has done much better than me overall and so I am thinking responds better to chemo. Hopefully she will get much longer push back. Sending love x
Very interesting question and nicely written . I think "partial" is when some little tumors shrinking , some freezing some remain the same not increasing.....
Hi. I had this scenario with first recurrence. My second line of chemo was partially successful. My husband and I were really upset but the oncologist wasn’t worried. She kept calling it a nice result! They said it had to be viewed as a chronic disease. In the end I lucked out because Olaparib took care of the remaining cancer. If I were your partner I would look at the trials of drug combinations like immunotherapy or Olaparib plus another agent. Good luck! Xx
Yes! Hi jontaejones, I’m a bit late to answer but my story is very similar to your partners except I’ve been deemed, “palliative only” from the start and debulking left quite a lot of “seeding”.
A partial response was a good result for me last year when I finished my 3 rd line of Paclitaxel. The lesions that had started to grow are now frozen and last month’s scan showed that they haven’t moved so I take that as a win. I’m not sure if I’ll be allowed taxol next time as I’ve now got a bit of neuropathy in my toes but I’ll deal with that when I have to.
We are all different but I think there are a lot of similarities here. I am getting on with my life, going off to Spain and now holidaying in Somerset. I do have some pain but I take a supply of prescribed analgesics with me, countered by laxatives and have learned to balance things and deal with the fatigue.
Yes, OC is often a chronic disease we can live with for many years - once you get used to it.
Stay positive and start planning for your future together.
There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early recurrence detection as well as matching with treatments based on genetic mutations. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan.
Most oncologists don’t use it for “clinical application” yet because its supposedly “new” technology even though its been around since 2004. MD Anderson just adopted it under standard of care at their practice 2 years ago. Your oncologist could order the test even if they don’t typically do so. This might give you a better idea of your situation instead of waiting and watching on scans. If any circulating tumor cells are found the original RGCC test can even test 53 types of chemo on your cells to find out if they are chemo sensitive. They also test 30 nutraceuticals (vitamin C, herbs, etc to see if they have any effect on patient’s own tumor cells).
There is a Bill in the Senate that was introduced in 2021 called the Medicare Multi-Cancer Early Detection Screening Coverage Act that is pushing to have this test covered by medicare as a screening and early detection tool for the general public as well as a way for cancer patients to be monitored after treatment. I just spoke to my oncologist about it and after some insisting he agreed to order the test. This might help you have some peace of mind if you have a more accurate screening tool utilized like this blood test and a better assessment of your partner’s condition.
It might also be worth looking into an immuno-supportive therapy called Dendritic Cell Therapy. The same RGCC company that does the circulating tumor cell test also makes an individualized dendritic cell treatment based on the patients own tumor cells found in the blood. They basically harvest Mononuclear Cells from the patient’s own blood, the cells are then cultured in the presence of immune stimulatory agents (cytokines) and matured into Dendritic Cells by exposing them to the patient’s own inactivated tumor cells or with certain tumor specific proteins. The patient’s own matured dendritic cells are then infused through IV to the patient to boost and fortify the immune system. Its basically like an individualized vaccine for your specific cancer cells and your immune system. Dendritic Cells are a highly specialized type of white blood cell with a unique function. Their usual function is to identify a foreign substance including cancer cells and then jumpstart the immune response by bringing the foreign substance to the attention of the rest of the immune system (mostly T lymphocyte cells). The activated immune system is then able to circulate throughout the body and destroy the cancer cells.
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