Hi all
I’ve been away for 3 glorious years in remission . My ca125 has always been between 8 - 15. It was 890 at diagnosis. Today it has come back as 41. I’m absolutely terrified. Has anyone had a raise like that and not had recurrence.
Love Marian xx
Hello Marian - sorry my increase in CA125 turned out to be a recurrence, however that does not mean that yours is, only a CTscan can definitely determine that. Remember CA125 can rise due to many different factors. Good Luck
Thanks Lyn, was your rise slow overtime? How are you doing now? X
mine went from 38 to 1080 in 6 months. After 6 cycles of caelyx/carbo I am doing ok. My CA125 was down to 155 after cycle 5 so hoping it has come down a bit more since. I have a CTscan on Friday which will tell me a bit more then clinic on Monday where we will discuss the results and my forward treatment plan. Try to stay positive, a CA of 41 is really not that high, you will probably be monitored to see if it keeps going up, if it does they will have treatment ready for you. x
my cancer did not show up on a CT scan, even though my CA 125was 157
Oh Marian - it's so stressful isn't it. When is your clinic appointment to see what they think? Mine went up a small amount with a sore throat then went back down again so I think any infection or inflammation can send it up. I saw one lady in a forum who had a dog bite and it shot up! So fingers crossed it isn't anything ...
Lynn
x
I’m waiting for my Oncologist to call this afternoon, she apparently wants a scan as I’ve not had one for 2.5 years.
It’s such a headache this disease isn’t it?
I know, everyone is saying it’s probably infection but I’ve had sinus infections and it’s never changed. I do have bursitis in my hips, not sure if that could affect it. I’m trying to be positive whilst trying to also be realistic (does that make sense?).
If it has come back, I can’t imagine going through it all again, but I guess I will have no choice x
Thank you Lynn, I’m trying not to panic right now but it’s a hard isn’t it. I know I’ve been fortunate not to have to think about cancer and treatment for the last 3 years, but the longer it’s gone on the more hope I’ve had that it won’t come back. Xx
Try not to worry.... I know that’s hard! In my experience they are looking for a sustained increase rather than a one off. If you have no symptoms, even if it is the dreaded beast, they may ask you to go on watch and wait. My ‘ normal’ ca125 is in the 200s because I have RA, so yours may just be due to low level infection or niggly things and nothing to do with OC. xx
Hi Lyndy.
That’s rotten luck to have RA as well as OC. I’m a Rheumatolgy Specialist Biologics Nurse and had no idea that the CA125 can rise with that. It makes sense though!
My back and hips are bad at the moment so it could be a possibility..... frightened to hope xx
My ca 125 is normally between 10 and 12 but went up to 29. This turned out to be bowel issues, I was constipated at the time. Within a month it had dropped back down to my normal. I hope it’s something like this for you x x
Thank you, I’m going to try to stay calm and take one day at a time. Thanks for replying xx
I live in constant fear too. My oncologist wasn’t worried when mine rose and said the same as others that it was a sustained rise that she was looking for. I was reading your profile - do you still have your stoma or did you have it reversed? I hope you don’t mind me asking. Feel free to message me privately if you prefer. I had one too as I had a bowel perforation but have now had it reversed?
Hi yes I’ve still got my colostomy. It would be a difficult reversal and I don’t feel it’s worth it. I’ve grown used to it to a large extent and don’t let it dictate my life really.
Was yours a colostomy or ileostomy ?
X
Mine was a colostomy and like you I got used to it and accepted it. They were going to reverse mine when I had my TAH but didn’t as my op was already 7.5 hours. However mine kept backing up and would only go with laxatives. I went back to the original surgeon who performed mine as an emergency when my bowel burst and they did a scope and believed it was blocking due to a parastonal hernia and narrowing and recommended I had it reversed. I had it reversed 2 years after my original op but I still have to be very careful what I eat and take laxatives. It’s not brilliant. Tbh I wouldn’t have had it done if it wasn’t blocking.
Sorry to hear you are in this position. It is so stressful when you are concerned about the possibility of a recurrence and the need to accept it if it is. I hope, like others, that there is another explanation for this small rise. And if it does prove to be the start of a recurrence after all, you will become able to deal with it.
I hope you can continue to take things a day at a time. Di
Thanks Di
I’m in that strange position of feeling hopeful but very realistic. I hope I can deal with it again if it is recurrence, it feels like a mountain right now x
Just wanted to say hello Marian and although it is always nice to see your face and comments, this is the hardest thing to do--to worry and wait. If you can try to not worry--of course it will give you a few better days till you know more, but I think worrying comes hand and hand with this disease and you have had--so far--quite a lovely run of not worrying which I have everything crossed (fingers toes) will continue! Thinking of you and hoping you will update us when you know more--which will hopefully be relief. oxox Judy
Hi Lovely Judy
How are you doing these days? I often think of you.
I know, I just have to try to continue in with life until I know more. I just think it’s shock at the moment.
People say that inflammation, infection and stress can all affect it and I have indeed had all 3 recently, but I can’t help thinking that it’s wishful thinking. I honestly can’t see that it would go to 41 for any of those, what do you think?
Marian xxx
I think 41 is a number that CAN be from swelling or other things--and so easy for me to say don't worry but of course we do! And mine was around 30 before debulking (I had chemo prior) and then went to 160 after the surgery and I was not in a good way and my oncologist just said "you have swelling in your abdomen--you cannot count that number" and it went back down below 30 when the next ca125 was done. So I am a believer in other causes Marian!!!
I am on Taxol--and they just added Avastin and I feel good--some fatigue but manageable (I am swimming again). It is hard to imagine how badly I felt a few weeks ago when right now life feels so normal and I am back to doing everything. Weekly taxol has been very tolerable for me (they ice my hands and feet during the infusion and so far, knock on wood!, no neuropathy!) Early in the game but it also helps mentally.
Wishing you the same mental help Marian---that it is a glitch and your three years will turn into many many more. oxoxoxo
Hello MH500. I'm new to the forum, but in a similar position as you - my CA125 was high on diagnosis (over 2500), dropped to 30 after my TAH and Chemo and continued to drop for months thereafter. It started climbing again last year however and though still below 35, it rises every few months. My oncologist sent me for a scan after three consecutive rises and the scan showed nothing. Though relieved, I am still nervous and awaiting my next test (end of February) and they certainly gave me the impression that it's coming back soon. We'll see soon.
I hope you do not have a recurrence and that your team can put you at ease after your scan. I have found a blog that keeps me grounded and a particular post that seems to sum up how we all feel at this time - she says, "like a porcupine in a balloon factory" - which is exactly how I feel. The link is here if you want to read it - it might bring relief, it might just make you laugh - but hopefully it will let you know you are not alone and that others feel like you. (Are we allowed to post links on here?)
mycancerconfessions.com/201...
Best wishes Keep us up to date and hang in there!
Sue
Aww thanks Sue, I’ve read it and had a giggle. It’s certainly a rocky road that we walk isn’t it. I’ve so enjoyed my 3 year remission (just didn’t want it to end x
The blighter is back
About to start chemo
Nervous to start Chemo :(
Two days since the news - I need guidance on how to start the fight back
