I was dx with Stage 3b OC in July 2022. I had five rounds of chemo (taxol and carbo) and then a major hysterectomy in December. Surgeon said there was no visual evidence of disease remaining. Surgery was followed by two more rounds of chemo. They started me on Zejula but after only two weeks my platelets crashed to 1, and was hospitalized and given platelet infusion as well as steroids
My CA 125 never dropped lower than 170. I started at 2200 in July. I just had a CT scan on Monday which shows… read more
Hi Jane 7,
I had 3 enlarged lymph nodes on the omentum when first diagnosed. So it had metastisized to the omentum nodes. By the end of my 6 rounds of carbo-toxal chemo, the nodes were nomal but removed during surgery along with ovaries, uterus, omentum, etc. Because the nodes were cancerous, I am on Keytruda and Lenvima as there is no way of telling if any cells spread through the lymphatic system. So far the PET scans have shown nothing but it is only 5 months since the surgery. My CA 125 is down to 5 and the side effects from the Keytruda and Lenvima that I am taking are mostly tolerable and allow me to function pretty normally. I suspect at some point there will be some activity in my lymph nodes and possibly elsewhere but I am hopeful that we will catch it early and be able to control it with my current meds. (The ANP at the office says that is the aim of maintenance drugs .i.e to maintain a good quality of life which eliminating or at least controlling an recurrences. So far, I am hopeful and taking it one day at a time. If my next PET scan is clear, they will probably increase the time between Keytruda infusions which will make planning my life a bit easier. I think the combination of Keytruda which apparently makes it easier for you immune system to find cancer cells ,and Lenvima which inhibits the ability of cancer cells to reproduce , is a good combination. Good luck on your journey. Remember treatments are being developed and approved all the time Big Hugs and Prayers💜💜🙏
Hi Jane 7, the only place they have ever been able to see my OC by scans is in lymph nodes in the chest. And they were all in difficult to reach places and small, so I never had debulking surgery. 21 were seen in my chest. I had 6 cycles of Carboplatin and Paclitaxel. Four months later, in March 2023, I was started on Cytoxan (chemo pill), Avastin and Keytruda. My CA125 has remained stubbornly high, recently in the 1500's. They are now doing PET scans instead of CT scans because they seem to show the diffuse nature and small growth better than CT's. I have a PET scheduled next week. Radiation was never suggested.
That sounds positive
I was diagnosed with OC IVB. The surgeon couldn’t remove enlarged periaortic lymph nodes during the debulking. I was referred to oncology radiology for possible radiation. However, a PET scan was ordered first that showed the nodes had normalized in size and there’s no cancer activity, so at this point, I have not received radiation which was my option.
Hi Jane... My oc was initially diagnosed after I felt lump in my neck. I was on Carbo/Taxol, then surgery followed and Zejula. My CT scan in May showed slightly enlarged lymph nodes in my neck so now I am on Avastin infusion and continue Zejula. I did have problems with Zejula affecting platelets and hemoglobin but I have tolerated 100mg well since July.