I’ve been reading posts occasionally in here since I was diagnosed with OC in March.
I’m 44 yrs old and to this point actively healthy. I’m happily married and have 3 beautiful daughters 18,15 and 7.
I had a cyst finding in early February and was referred to an onc gyn. She suggested I get a lap hysterectomy and that she did not feel this was cancer. My ca 125 was 220 and the cyst was multiloculated (6cm) No worries.
I was thankfully booked for surgery 2 weeks later. During the surgery obviously the cancer was found and they switched to a radical staging hysterectomy. Stage 2B or 3 high grade serous oc. Confused about staging since I did not have a ct scan completed before surgery
Now 9 weeks later I just finished cycle 2 of carbo/taxol/Avastin My regime is weekly with 6 cycles of carbo/taxol/Avastin (every 3 weeks) and taxol weekly in between. I had to take 2 weeks off in a row off due to low WBC. I hope that doesn’t happen again, pains were rollling back and causing more stress. the triple chemo day takes me out a few days and it’s rough but hopeful it’s doing it’s job
I’m being as strong as I can but have been pretty teary and emotional. Not knowing if this is working makes me nervous. I just want time like most, I need more time to raise our girls ❤️
Thank you for all your posts, it’s a lovely community. I’m hopeful that I can offer some advise to others as we go along this journey.
Hugs to you all
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FighterCW
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Have they checked your Ca125 since starting chemo?
I’m being treated at the Christie in Manchester and they have always checked mine at the beginning of each cycle (so in your case every 3 weeks ) and this should give a goof indication if the chemo is being effective for you x I’m sure it is and maybe you need to ask your consultant or CNS for your results. They may also do a CT scan halfway through to check if chemo is working but if your Ca125 is dropping well they may leave this until after chemo is completed.
It’s normal to worry and get upset and we all have our up and down days so this is a great place to come and get support from wonderful ladies who have been there too x
Thank you! I do have a couple ca 125 results one in April was 30 and then may showed 12 so hopefully good signs. She’s mentioned. Doing a ct halfway through but will see. Hoping to get these WBC counts on track.
Thank you for your info. I’m being treated in a small province in Canada and we do a lot of research on our own 😌
Your CA125 marker indicates the chemo is doing its job. Stick with the chemo, its tough but doable and yes an emotional roller coaster. I was diagnosed stage 3 high grade in October 2007, still here despite 2 recurrences and currently NED. xx Big Hug, Kathy xx
Welcome! The uncertainty is all part of the disease and it’s really hard. Someone posted a while back that their oncologist told them that it’s the oncologist’s job to deal with the cancer and it’s the patients job to show up and follow the rules ( ie report rises in temperature etc). I thought that was a nice way of saying ‘I’ve got this- you look after yourself ‘ xx
My advice (which no-one takes) is don't ask about your CA125. At the beginning of my treatment in 2016 my oncologist asked if I wanted to know about the monthly reading. I declined, knowing it would only wind me up. Good decision in my case, I'm neurotic enough without the numbers!
Being teary and emotional is normal, especially if you are as young as you are with kids. You could try a MacMillan counsellor, I go to one and I find I am much calmer now.
Hello there,
It is bloody terrifying when all said and done, my son was 10 when I was diagnosed three years ago and I'm just thankful for every day he gets older which feels a lot like i'm wishing his life away!
From what I've experienced and what I've heard it's not unusual for a diagnosis to be made during surgery, mine went from dodgy cysts pre to 3c during. It was a shock!
I felt like I was in a fog for at least a year, I now feel normal again, just new normal, I changed my job and now work 2 days a week, I managed to continue that during my first recurrence last year. My students didn't even know I was ill.
I suppose what I'm trying to say is this is what you are feeling is all normal, it just takes time. Treatment is crap, you will be out of the other side before you know it, honestly!
Hi Fighter, so sorry you have to go through this, you are still very young and your nervousness is completely normal and understandable, and you want your children see growing up.
I used to ask for my blood test results, including ca125, every treatment; then I relaxed a little bit. It’s up to you, but so far it looks like the chemo is working beautifully, 12 is a very good number and you are not even half way through.
Hello Fighter a first posting is the difficult one. I only found this group about a year in and so wish l'd know about these ladies in the early days. I think we all go into shock at the beginning and then slowly life takes on a new direction. You are doing very well and the fact that you were healthy and active before hand is good. Your regime is tough, but as stated it is doable and you will come out the other end. Tailor your days to how you feel, l soon noted a pattern with my treatments.
Don't beat yourself up on days when you find it all over whelming, give in, have a cry, then pick yourself up and move forward.
Stay strong hun and we will hold your hand across the water.
Being teary and emotional is a part of the journey and helps us to face the outcomes and treatments. You’re not alone and it would be strange to not feel the grief and sorrow from time to time. Grab the good times with both hands and keep looking to the future. Take care of yourself and let your family carry you when you need them. XCheryl
Welcome Fighter. Glad to read they switched your surgery to radical hysterectomy during surgery. Your description of what the chemo is like (taxol weeks alone then the three one of those 3 weeks) is exactly how it was for me. Needed those 3 days after the "big guns". There are so many options should you ever recur and there is always the option you won't have to worry about that. I know what you mean about your kids--each day being with them is another day they have you, your love and guidance and mine--in their 20s, still come to me for guidance and I still feel so lucky each time they do, that I can be there for them. I would think that in the coming weeks if your WBC counts don't go back up they will give you shots (you do yourself) to raise them. At my institution in New York, they automatically prescribe the shots that raise that count at a certain point in Frontline treatment, so obviously it happens to a majority on this regimen.
I am diagnosed in July of 2016 Stage IV.
Wishing you luck but I would say its working well by your ca125.
Welcome! I really sympathize with how you feel. I got diagnosed last August at 69 and that was bad enough. You are so young and have your children who need you (they never stop needing you but it's not the same as when they're young). Hang in there and assume you will be NED when frontline is done. Then you can get stronger and enjoy every day.
You're in the stage right now where you feel most vulnerable because you don't know if your emotional due to the chemo or just from fear. You will come across lots of great information here. The addition of the Avastin has only recently been discovered to work on first line. This is a whole new age of choices out there for our sort of disease. I am also Stage 3 High grade serous. Diagnosed in 2015.
This is what I can tell you....get your body healthy any way you can. Once that happens you will feel better after the chemo does it's job. Grab those beautiful girls of yours and continue on with life. Don't even go online and read up on ovarian cancer...many of their statistics are old. You are not a statistic. You will do this. I promise.
Hope you feel better soon. Please do keep us posted so we can follow your progress.
Thank you everyone for your kindness and support. So very thankful to have this group to go to. I wish you all the best and hope to be able to bring so encouragement and support to others
Dear FighterCW. I, like the lucky ones who get through the treatment and find a way back to good health don’t spend too much time on the site. Ovacome was such a life saver for me when I was diagnosed with ovarian cancer in 2016. So many amazing women gave me support and advice. I would have been lost without this world.
I was initially told my ovarian tumour was borderline, this became 2B and then 3C. I felt like I was in a never ending rabbit hole of bad news and painful treatment. And then the chemo stopped, and avastin stopped and I was told the spread to my liver had gone too.
This was a miracle for me. I was able to find a road back to good health. I could spend time with my 2 children (now 15 and 9). I enjoyed each well day.
I rarely post as I didn’t know if my journey would fill people with hope or worry. And I feel many women who are NED after ovarian cancer worry about how our good news may cause upset for those starting or continuing their treatment after this frightening diagnosis. So we gently drift away from the site.
I was recently diagnosed with breast cancer and a month ago I underwent a double mastectomy and reconstruction. I have the both BRCA abnormalities. So I’m starting another journey and finding my way again.
But I wanted you to know there is hope. And I am sure this site and your family and friends will help you along.
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Recent diagnosis Low Grade stage 3 serous carcinoma OC
Stage 2 low grade serous ovarian cancer
Feeling down
Best wishes to each of us!
Help I’ve a new tumour while on chemo clear cell adenocarcinoma aged 40
