I haven't written on here for a few months but,I have checked in now and then.Had a difficult few months.Had burst water pipe in house which ruined kitchen,sitting room ,hall and corridor so, we had to seek accommodation and stay away from home for over two months.I missed my home so much and eventually had to fire the builders so we could get back in Christmas week.
I thought due to stress my cancer cells would be on over drive and blood count down but surprisingly my CA 125 is the best it's ever been 10.2014 I was diagnosed advanced stage four ,CA125 2000!!! Estimated time of departure to the world beyond 3 months!! And yet I'm still here,into my 6th year.
When I was diagnosed Avastin was THE maintenance drug.Due to research many more maintenance drugs have been licensed,especially Parp inhibitors.Ive been on Parp (Olaparib ) since Jan 2016. I've gone from being inoperable on diagnosis to having 2 surgeries in the past two years.The latest one was July.A tumour near my left hip pressing on a nerve(pretty painful). It seems some tumours are coming back to their original site but they can be managed.I guess management and maintenance are by words when it comes to Ovarian Cancer.
I'm one of the lucky ones,as my CA 125 has always been my indicator that something is flaring up.I have lost faith with CT scans as ,for me they have rarely picked up anything yet,PET scan has always had results.I have so much care from a Palliative care team that,between Oncologist,gyneoncologist and Hospice,they have kept me going and alive for this long.The Hospice steps in for pain control and holistic therapy.Ive learned it's not a place to go to die but,a place to go to live with an acceptable quality of life both for me and my family,because as we all know our family and friends are also anointed with the bigC .
I'm doing O.K .and at the end of the day ,I think once each one of us can say ,"I'm doing o.k"we're enabling ourselves to normalise in society.
Thinking of all of you.xxx Annie H
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Thank you for your post annieH1. Another glimmer of hope for us all and inspiration that we can defy the odds when the outlook can appear bleak. You’ve had a rough ride (plus your house stress!) so fingers crossed that you can now be ‘managed’ and you can enjoy a good quality of life. So pleased also that Olaparib is working well for you also.
Annie H, what a great post to help us all keep a balance. Very pleased you have your home back and your health is still 'reasonably'/brilliantly intact; what an achievement by you and all those caring for you. It sounds as if you're still smiling through all this, so long may this continue. Warmest wishes, L
I don’t trust the CT scans either! All of mine before diagnosis as well as ultrasound were “normal” so exploratory surgery is how mine was found, when my GYN first did my CA125, it was 3300. Two weeks after that ( the GYN Onc ) wanted to wait to see if clearing up my constipation would change that number, so I went home and took merilax 2 times a day for two weeks.
And they repeated the blood test, it was at 5600! So a week later, they did surgery and I was diagnosed with 3C Primary Peritoneal Adenocarcinoma. That was November 18, 2016. I finished 9 rounds of chemo, Carbo/taxol, on September 23rd, 2017.
I started on Letrozole and have been on it since.
Recently my CA125 has begun to rise again. Mine is a good indicator for me as well.
I had a PET scan in September of 2019, that showed NED.
They also did genetic testing on my cancer, and it came back 83% estrogen fed. I had been on HRT for almost 3 years at that point. I threw them away, I’ll deal with the hot flashes and mood swings lol! Of course that’s what my husband hates the most 🙂
I think it’s awesome and amazing that you’re still here!
Thanks ladies,it's great to see us all still here and still helping each other with our words and well wishes.Its a huge problem with CA125 indicator and CT scan.For those of us lucky enough to know our CA125 is our indicator we are lucky ,also I think if possible we should have a choice of what diagnostic tests we require post op or post treatment.I know the medical Onc in most place restrict the use of PET scans on patients as they contain radioactive material and also because of the expense.It costs €1200 each time I have one ,glad to say I've only needed 2 in the past 5 years.I know I can't have continuous PET but when I have little if any faith in CT scans it is a catch 22 situation.Best wishes to allxx
Your troubles with builders puts my war with the Bord Gais in the halfpenny place. The stress you endured was immense but they picked the wrong woman , just as OC picked the wrong woman! It's so good to hear that you are ahead of the posse and winning the battle. You have a great army around you and that is so good to know that some hospitals get it right. You're certainly one of my guiding stars !
I haven't written a proper post for a long time . I don't know where to start. I have three appointment in Feb. A mammogram to check my remaining breast and a meeting with the Breast clinic and also a meeting with my oncologist re my PPC . It was very romantic of them to choose Valentines day for my mammogram ❤.
Anyway Annie I will post after all that is over. I'm now in my ninth year and by some miracle still above ground ! You keep on going girl as you are setting my pace and I'm depending on you!
Happy New Year. Hopefully the stresses of your house are well behind you. Glad to hear you are managing your symptoms with the help of your various teams. Fortunately cancer has become a chronic illness for many of us but with it comes the underlying fear of recurrences or progression. I think there is limited services for those with chronic illnesses in Ireland.
I wish you the very best for the coming year. May we all stay positive and continue the fight against cancer to the best of your abilities.
Take care
Esther x
Sorry Anne only logged in now and read your post. I haven't been on in a while. I am glad you are doing okay. You seem to have the ideal approach to Ovarian Cancer and I am delighted all is working out for you. Sorry about the house but its good it is coming together too for you and hubby
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