Added after post: Above are some of the images from my PET Scans for last July and October. I haven't got last week's to show unfortunately. I wanted to show how much tumours can diminish with just carbo and avastin in the hope it gives hope to everyone - especially those who may be Stage 4B, as I am.
Hi there lovelies.
It's true. I had convinced myself that the chemo had stopped working and that I was going to be told that the vile critter had spread all over me. Since having carbo/avastin only for the majority of my treatment I suspected that it wasn't doing a thing. I've felt well and my CA125 has hardly moved.
Got into the oncologist's office and he was grinning like the proverbial Cheshire Moggy. Good news, he said. You are stable. What!!?? says I. He said that all of my tumours are a fraction of their original size and the CA125 of 126 is good enough for him to say that I'm stable. He was very pleased and showed me the Pet scan results. I couldn't quite believe my eyes to be honest. From last July until October they had shrunk by half but since then they have gone even smaller and the tumours in the lymphs are barely visible, especially in my chest. He says I'm continuing with Avastin only for about a year at 3 weekly intervals starting next week. I'm carboplatin tolerant still so if there's an increase in the tumours in three month's time then I'll be straight back on carbo. He may even let me try a bit of taxol at a very low weekly dose if I insist but he said that the taxol isn't going to perform the way carbo does. My bloods are now good and there are no new sites, which is the most important thing. Having a rare cancer means that the treatment has been a bit of a fingers crossed type solution.
I asked why I couldn't have surgery and he gave a very good explanation, which may help other girls in the same situation. Because my ovaries were the primary site for the cancer which metastasized into the peritoneum and then on through the lymphatic system (although not the normal lymphs associated with OC), if he operates and takes out the ovaries he won't be able to take out all the lymphs and tubes which have cancer cells in them. Therefore, the cancer cells which are there will travel around and get deposited somewhere else. It's too risky to take the ovaries only and I could end up in a worse state than I am now. It's best to keep on attacking the cells where they are. I'll never be cancer free, I've known that from the start, but at least stable is good and he's convinced that the Avastin will continue to choke the bastards. Although he didn't say bastards as I don't think he knows the English word for that...... His enthusiasm was infectious to be honest so if he's happy with me then I am too. He cannot tell from the PET if an ovary is stuck to the bowel but as I function normally in that department then he's sure the bowel is ok. Besides, he won't be opening me up so it's irrelevant right now.
Hubby and I sat there quite stunned to be honest. I could feel hubby's hand tighten in mine and then relax. We came home and both fell asleep curled up on the sofa. I feel as if a great weight has been lifted - as though I had been told that the cancer had gone altogether. We are now planning a trip back to Blighty for April to see friends and family and if anyone is having a get-together of warriors anywhere in the south east of England, then I'd like to be included. I would really love to meet some of you as without you I don't think I could have survived this last 6 months.
My news is tinged with a bit of guilt, especially as Lily-Anne and some others are not in a good place just now, but I'm sure that she and the girls will be happy for me. I feel as if I have my life back, even if it's for a brief moment in time. No more glooms.
Big love
Kryssy xxxx
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Kryssy
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Awesome news lovely, I am so very thrilled for you and your relief is tangible across the Interweb. Long may this continue for you, big hugs and love ❤️Xx Jane
Fantastic news and so pleased for you and your family . Enjoy planning your trip and sounds like a good reason to plan a teal gathering in the SE . Let us know when you have a date and where abouts your staying and am sure something can be arranged .
Thank you Kim and I'll certainly let you know when dates are fixed. We will be staying near Halstead in Essex and will have our little Noddy car to travel around in. It's ok for short journeys but no good for long trips across the country. I would so love to meet some of you and give you such a big squeeze. Watch this space xxxxx
This is wonderful news. I was in a similar position to you with my cancer not declared operable and now showing in my neck lymph nodes. But I've had a quality 2 years and still feel well. Avastin had a lot to do with that - it held the beast at bay. So I hope this works for you too, Kryssy. Seize the day and enjoy
Thank you. I've already got affected lymphs in thorax, underarm and neck so stable is good. Just celebrating with a very large glass of nut wine and cider - it's a drink of the region. Very potent but very easy to go down so I'll probably only be lucid for another hour or so. xxxxxxxx
Great news, sounds far better than you were expecting. Not sure about nut wine and cider but maybe it tastes better than it sounds. Hope to join the meet in south-east in April.
I don't like cider but it's a Limousin traditional drink with chestnut wine and it's delish. I'm on my fourth glass now and ready for dancing on the table. Probably time to call it a day before I embarrass myself. And, you are right. Not the news I expected. xxxxx
🤗 so happy for you. Stable is good. I used to think anything but NED was rubbing but not any more. If the aliens have been caught in the fly paper then power to you
Thank you so much my dear one. I've been thinking of you today and my news was tinged with a bit of sadness for you of course. I've also been trying to post on Facebook but it's not having any of it. I'll try again tomorrow. I hope you are feeling ok and not in pain. Take good care and "see you soon" one way or the other. xxxx
Thank you all for your kind good wishes. Rightly or wrongly I've added some images of my insides from last July and the difference in October. I have added circles and dates to help navigate. Wish I had the images from last week too. I just wanted to help those who may, like me, be Stage 4 and worried that things won't get better or that the chemo isn't working or any of the fears that I had. Looking at the images tonight has made me realise that things can improve - even though the tumours may never go altogether. If just one girl - particularly those that are new here - gets encouragement from looking at my "bits" then it's worth it.
I’ve only had scan reports so far - definitely going to ask for the pictures now, although I’ve never had a PET scan, only CT. Not sure they are as colourful as yours.
A PET scan shows every little thing and I can see all the images online. There are about 1,500 of them. I'm given just snapshots of the tumours. It takes two hours to prepare with drips of glucose and radioactive solution. The scan is silent and takes 15 minutes. Because it is so detailed it doesn't miss anything. It's an amazing machine. Xxx
This is brilliant news, it shows Avastin works for some better than others, I am also one of the stable ones. I got extra shrinkage as well so hopefully you will remain treatment free after the Avastin for some time. I bet there was no sleep for either of you last night or the night before so ye were exhausted. Do celebrate in style
Fantastic news my lovely that’s just what you and the rest of us needed to read/see/hear congratulations celebrate 🎉 🎊 with a bottle of champagne 🍾 🥂 you deserve it ❤️💕❤️💕❤️
Ow!! Got a hangover. Can't remember getting to bed. Hubby taking me to lunch in Limoges as I'm a bit wobbly so time for a nap and try to sober up. xxxx
So HAPPY for you Kryssy and thanks for sharing--the news and those colorful images. Happy with your results and so glad you will be traveling soon. oxox
I do not comment much but read everyday. I love you all! Kryssy you always make me laugh! You deserve the very best and I am so happy for your good news! Blessings to you!
Oh Krystal I couldn’t be happier for you. You must have been in total shock when given such positive news. Get that trip back here booked and enjoy 😃😘😘😘. Xx
Thank you, Lorraine. My news is tinged with sadness of course for some of the girls and I expect my day will come but for the moment I feel alive. I wish you well too - and maybe a bit cooler. Xxx
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