More details

I know I've been conspicuously quiet since the brief update yesterday. Usually, I post the night of my appointments with the nitty gritty details. But I couldn't do it last night. I was physically and emotionally exhausted, and quite honestly, I didn't know what to say. I still don't, but I'll give it my best shot.

I have so many emotions flitting through my head and heart - some good and some bad.  In the end, I feel neutral; maybe even cautiously hopeful.

I honestly thought (in the back of my head) I'd walk out of my appointment yesterday with a date to start the next round of chemotherapy. I'd have to drop out of my life (again) and be thrown back into the deep, dark chaos of treatment. To be honest, that thought made me hyperventilate and tear up. I didn't know where I was going to find the strength to do it.

While chemo is an option now and one I'll probably need to comtemplate in the future, it's not the recommendation Dr. H is making now. He says my cancer responds well to chemo and there are lots of cocktail combinations we can try to control this stupid disease, but he's suggesting a new clinical trial. To me it doesn't feel right to jump to chemo at this point.

Medical details
Since my ascities, which is the accumulation of fluid in the abdominal cavity, is increasing and my CA-125 blood level is 514, doubling three times over the course of the last three months, the cancer is coming back. That means the Olaparib worked, but it isn't working any more. So I'm no longer an Olaparib girl. I had my exit EEG yesterday to ensure my heart function wasn't affected (it was fine) and I went home without the big, white capsules. The good news is I don't have to fast for three hours around their consumption any more.

In a way, it feels like I got kicked off the study and I was a failure - and that bugs me - but according to the latest research, I'm actually a success story since I had eight to nine months in remission. It doesn't feel like success to me, but I guess I had higher expectations of the "wonder drug" than the researchers. To be honest, the whole experience has me a bit disillusioned about clinical trials; but not enough to opt out of them. Maybe I'm a little more realistic in my expectations of what they can achieve.

The CT scan showed my tumour shrunk from 9 mm to 7 mm. Yay! The Olaparib obviously worked on those "older" cancer cells (as far as I understand it, the ascities would be from newer cancer cells that have developed a resistance to the drug and are growing). The cancer hasn't spread to any other organs, the deposits on my omentum are stable. The density on my liver, which has been there since 2010 and may be a cyst, is stable. All other organs are unremarkable. So that's all good. It's just the darn ascities that's building.

Clinical trial
Dr. H was practically bouncing on the balls of his feet with excitement when he recommended a new clinical trial. He thinks this is the best option for me at this time - and I honestly believe he has my best interests at heart. I have confidence in him and he was very straightforward with me yesterday. He researched various clinical trials going on in Toronto and London, yet thinks this one, which will be happening in Hamilton, may be my best choice.

The study is currently being considered by the ethics committee of the hospital and Dr. H expects it to open to participants in mid July. I don't have all the details, but it involves a new antianglogenic inhibitor, which cuts off the flow of blood and nutrients to new blood vessels. Because tumors cannot grow or spread without the formation of new blood vessels, researchers hope these chemicals will prevent or slow down the growth of cancer by blocking the formation of new blood vessels.

This phase I clinical trial study involves this antianglogenic inhibitor  in combination with other drugs (to see if the additional medications increase the effectiveness and assess the interaction of the drugs) versus on its own. Twenty women will be admitted into each arm of the study and I'm now on the list of potential participants.

According to research I did this morning, angiogenesis inhibitors usually have only mild side effects and are not toxic to most healthy cells. Tumors do not seem to develop a resistance to angiogenesis inhibitors, even when given over a long period of time, unlike the resistance seen when chemotherapy drugs are used. The side effects Dr. H mentioned are increased blood pressure, a rash on hands, protein in the urine (which apparently can cause kidney damage over time if the protein is too concentrated) and tiredness.

My research revealed the following limitations: Angiogenesis inhibitor therapy may not necessarily kill tumors, but instead may keep tumors stable. Therefore, this type of therapy may need to be administered over a long period. Because angiogenesis is important in wound healing and in reproduction, long-term treatment with antiangiogenic agents could cause problems with bleeding, blood clotting, heart function, the immune system, and the reproductive system (which I no longer have anyway). I'm sure I'd be monitored very closely to watch for these.

The drugs are taken orally and not in conjunction with chemo. I would have several appointments initially to sign me up for the study, get the appropriate tests and then be monitored, but then they'd taper off. Best of all, if I tolerate the drug(s) well, I'll still be able to work and do normal life things.

The hitch
While I am celebrating the 2 mm shrinkage in my tumour, that great news may ironically end up being bad news for participation in the new study. I need a measurable tumour of at least 1 cm to qualify for the clinical trial. So, it seems wrong, but I almost need to wish my tumour will grow to the appropriate size.

But I believe God put me here now for a reason and I will qualify. I need to have a "wash out" period of four weeks with no Olaparib in my system. Only 40 women can be part of this clinical trial so my reoccurence timing is ideal because Dr. H expects it will fill up quickly. And as I said, I'm on the list. It's as if all the stars are aligning to position me for this next path on my cancer journey.

My next appointment to talk about my situation is on July 26. Until then I get to go to the beach, spend some time at a cottage, go swimming, visit with friends, work - basically live life and enjoy my time. Of course, right now, I'm still feeling a bit perplexed and bombarded by the information and the hurricane of emotions I'm feeling.

My one big fear is the acities will grow out of proportion in the next month and swell my abdomen like a balloon. That would inhibit my enjoyment of the summer and the activities I have planned. It would also mean trips to the doc to get the fluid drained. I feel slightly swollen now, but I still feel good. Fingers crossed, I'll stay that way. The new drug is supposed to be very good at drying up ascities. (Another good omen I'm supposed to be on this clinical trial since that fluid seems to be my nemisis).

So those are the details as I understand and have processed them. I'm sure I'll have lots more information and thoughts to share over the coming days.

I also want to say thank you to everyone for being supportive and patient with me (and I love the hugs). My apologies if I didn't respond to you. I appreciate all the messages, but I'm a bit overwhelmed right now. Sometimes I don't even know what to say. But I do appreciate the open arms and understanding. I may need the listening ears when I am ready.

You're all amazing.

Tina