Hi everyone. I hope you are all coping okay and feeling well.
Could I ask a quick question re monitoring progress after chemo has finished?
I had three cycles of chemo and Avastin, my op, then picked up the chemo and Avastin for another three cycles. My CA125 went down after the first treatment from 593 to 120 and after the third was in the normal range. It is now 16. I was told my op went very well and all the visible cancer was removed.
I finished the chemo on 5 October and am now just having Avastin. I went for my first Avastin only treatment today and was told that I didn't need blood tests for four months and I wouldn't have a CT scan either. I wondered if this was the standard - I am feeling a bit abandoned and worried things may be happen and not be noticed!
Thanks!
Lesley
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LesleyGB
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Hi Lesley, this certainly accords with my follow up (although I did fall through a gap after radiotherapy so was several months after chemo before I was seen). I was told that as they’ve removed all visible evidence and the chemo should mop up the rest, that there’s no point scanning and also not wanting to unnecessarily expose you to radiation.
They’ll monitor your CA125 as yours clearly reacts so is a good indicator (coincidentally I had my three month call today and mine’s dropped again). The most important thing is for you to be aware if anything just doesn’t feel right and report it to your team. The afterwards is a strange place to be so I completely understand c
Hi! Thanks so much for your reply - it, and others, have definitely put my mind at rest! It was the gap between the chemo ending and the next blood test that surprised me and made me worry, but this is obviously standard practice.
Hi Lesley. Very happy for you - such a positive response.
I’m hoping for something similar. My Ca125 was a bit higher at diagnosis, but went back to normal range with chemo. My op is tomorrow, so I’m crossing fingers that there isn’t anything nasty that hasn’t shown up so far.
I notice that you’ve had Avastin. This hasn’t been mentioned to me, although it might be something that comes up later.
In terms of follow-up, I can understand them not wanting to do another scan, but it’s worth exploring why there’s a gap of 4 months before your next blood test. My guess is that it’s because the cumulative effects of the drugs you’ve had are quite long-lasting, but, given you’re worried, why not ask? You might need to ask several times, but worth persisting.
You could also try your GP practice. I’ve pretty much given up with the doctors- too many junior locums - but the practice nurse has been very supportive.
I’ve noticed that there are a number of posts on the forum that talk about the strangeness of being ‘on your own’ after such an intense regime of treatment, but there are some very kind people on here who are generous with virtual support.
Thank you so much for your reply - great that youR CA125 is now normal.
The operation can be really scary - waking up afterwards I was so uncomfortable that I wish I hadn't had it done - next day I was up and walking around and discharged two days later! I do hope yours went well.
Yes, I will ask my oncologist when he rings in a few weeks. My GP has been amazing, ringing me a few days after each treatment to check how I was - she has said to ring her anytime I want and she will get back to me if she is busy. so will do that.
Hope all goes well for you and stay well. Let us know how you get on.
I finished my chemo in july and had ct scan and ca125 bloods done in august to confirm thr treatment has worked. I am now due to have my review end of nov so ct scan and bloods all booked for beginning of november. Between this time a couple of issues i have had with not feeling well with after effects and i rang my cancer nurse and she has spoken to my consultant and further tests have been done. So its quite normal to wait months between checkups x
Thanks for your reply- everyone has been so supportive. So please that the treatment has worked for you! Hope that the review is positive and that you are feeling okay. I did presume that the three weekly blood tests would continue but I just need to trust that the team knows what it's doing!
Hi Lesley I am on Avastin after first line, I have blood tests every 3 weeks and my CA125 is climbing. I was NED 6 weeks after chemo ended having been hospitalised with pneumonia and pluerisy at the end of chemo, that could be why the bloods are every 3 weeks not everything is explained. Otherwise good result take care Sue xx
The general consensus is that blood tests aren't so frequent which has put my mind to rest to some extent. And some people haven't been put on Avastin but that has been the plan with me since my first consultation with the Oncologist. Yes, maybe you are having more blood tests because of the pneumonia/pleurisy. Great that you are NED! Brilliant!
Very similar to me ,I finished chemo December 2019 , had ca125 every three months ,last one went from 16 to 100 ,so had emergency scan , showed its back ,starting chemo again Friday. I wasn't put on anything else ,perhaps its four months because your on A vast in, wishing you a long remission.xx
so sorry you're back on the chemo trail. Join the queue. Which chemo this time? Whatever it is I hope to God it works. I keep hoping to God. I just HOPE he's listening to us all.
Hi again Cheryl, doing ok 5 days after Taxol. A few wobbles such as aches and pains. All manageable with a few different medications. Getting pain where the tumours are and where the tumours aren’t. Sharp pains. Is this normal for Taxol? Hope it’s Taxol doing its magic 🧚♂️ No nausea and still got hair. Well prepared for hair loss (but not emotionally) had difficulty sleeping. Is it tension
Pleased to hear you're doing OK with the taxol ,it affected me badly first time round ,I remember getting stabbing pains ,so let's hope its zapping the b*****d ,i didn't get nausea but lost my hair fairly quickly, didn't bother me too much but I'm dreading it this time,take care ,best of luck .xx
Thanks for replying and putting my mind at rest re the gap between bloodtests. I am so sorry that you are back in treatment and hope it's the last time before complete recovery.
We all understand your feelings so well, It’s quite normal to feel a bit like you’ve been cast drift after all the chaos of diagnosis, surgery and chemo. It’s something you do get used to in time but take some comfort in the fact that you can always contact your medics if you feel like something is untoward and they will respond. I had weekly treatments followed by a CT and bloods, once the results came back as being fine my team reduced my attendances and set me free. I found it really quite unsettling and I felt abandoned at first but I soon settled into a new routine and you will too.
Congratulations on doing so well and long may you keep well. Keep safe and stay well ❤️Xx Jane
Thanks for responding - this is such a lovely supportive forum! and the general consensus is that a few months is left between blood tests. Yes. definitely feel a bit adrift and it's only been three weeks and a day! I am such a wuss! I agree with the chaos of treatment - I think it fills your mind so much, that, when things have calmed down, you have space left to worry! I definitely won't hesitate to contact my GP (who has been amazing) or the hospital team if I am concerned about anything .
Well...i stayed on top of scans as the doc didnt so w avastin once a month then onc said after 4 months wait 3 weeks then they ordered ct and pet scans to know where we were. Good luck sounds as if you are going in the right direction when i did avastin 17 times went into remission for a year.
I agreed a monitoring regime when I went for a second opinion at RM. This was then followed at my local hospital at my insistence . It was suggested watch and wait at my local hospital but as I did not have any symptoms I did not know what to watch and wait for!This is why I had a second opinion.
For 5 years I would have 6 monthly blood tests and scans. Note some hospitals follow up for 10 years but my hospital is 5 years.
I said at my last consult that I now felt ok (not quite so paranoid now) with annual scans. Last scan in June - all ok 😁.
When my 5 years are up I think I shall ask the GP for a yearly blood test just to keep my mind at rest. If they do not agree I will pay for it. Peace of mind is worth it.
It might be worth searching the forum for “monitoring “ as there has been a few threads on it. I appreciate that guidelines change but you might find them interesting.
I also suspect that it may vary with stage and type of oc as well as the hospital. I must check the NICE guidelines now you have reminded me.
How brilliant that your last scan was fine - such lovely news.
I think you are right with the different ways hospitals deal with treatment - not sure why I am having Avastin, for example, when people at the same stage and on the same chemo don't seem to be offered it.
I was thinking of paying for private blood tests every couple of months just to keep my mind at rest!
Take care and thanks so much for your comments - people on this forum are brilliant!
Hi Lesley, it sounds as if everything's going well for you., and your treatment seems pretty standard. Avastin's a great maintenance drug, but it does have some side-effects to watch out for. What happened to me after nearly a year on it was my blood pressure suddenly shooting up, and that turned out to be because the Avastin was affecting my kidney function. It's quite an unusual problem, but worth keeping in mind. So get your blood pressure checked regularly, and if it goes up unexpectedly ask for a kidney function test. Hopefully you wo't have this problem, and I wish you all the very best for the future.
Thanks, Specs! People have been so reassuring. Yes, my blood pressure did go up and I was off Avastin until I had finished the first course of blood pressure tablets and now all seems okay. I have a urine check every time I go when I am on Avastin and no problems so far - fingers crossed.
I'm still undergoing chemo and then will have radiation. When this is done, my gynecology onc said she will see me every three months and I will have a CA-125 test at each visit. If the CA-125 creeps up, then she will order a CT-Scan stparker54.
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High CA125, chemo/avastin not working 
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