I am seeing my onc next Tuesday and I asked the nurses in the chemo ward today could I get a copy of my bloods to bring with me as I am not seeing him in the hospital! When I got them I discovered that they have been doing the CA125 levels as part of the testing and my levels after 4th Chemo was 7 (she ordered another test today so will get the results in a week or so). My levels at diagnosis were 26 which was well within normal but I am happy that they are 7 now at the same time? I wonder is it of any use for monitoring seen as it had decreased during Chemo? I am going to ask him on Tues but just wondering what your thoughts might be?
BTW I am not worrying about this I am so happy to be done but I am very curious!!
DX
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HogwartsDK
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Ah D didnt they tell you that the bloods taken every few weeks also included ca 125/ This is normal practice but the nurses wont tell you the result unless you ask and then you just get a reply that the onc is happy. Normally all I am told at check ups are that he is happy with bloods etc. Any thing up to 35 is within normal range, They tend to use that test for monitoring during treatment. This will stop now and they will leave it until you ever get symptomatic at least that is the usual down here, You will probably get a scan a few weeks or so after treatment and from then on every six months, When I was first diagnosed,I had to have my bloods before going to the consultant every three months but now here they go on clinical assessment. They feel that continuous scans and bloods are bad, So really from now on you will only see the oncologist every three months or so, You will feel a little lost at first going it alone but you will be fine, This was the time I headed to Arc House to speak to a counsellor and I found it very beneficial, At least the long nights are in and hopefully the weather will get warmer so we can have some nice walks.
No Joan I hadn't a clue that they were doing the test! I was told today that I won't be having a scan as I was effectively in Remission before Chemo and all pathology tests were negative. Yes I will be having alternate 3 month apts with surgeon and medical onc for 2 years and then every 6 months up to 5 years depending of course on what happens in between! Not sure how they are going to monitor me if CA125 was always normal and no scans! These are my questions for next Tues!!!!
Hi D maybe they didnt do your 125s as often because yours were very normal before treatment, I would still ask the question though, They may rescan you in six months or so, I am sure you can ask questions at the Patient day and our esteemed Oncologist or gynae Onc will answer you, There is usually a questions and answers session there which is very useful.
Hi. Ive always been aware that my CA125 is checked and for me it is an indicator of progression/recurrence . Im surprised they never told you. Glad you've finished chemo, now to build yourself up again and look to the future! Kathy xx
Hi D glad you've finished chemo now, time to look forward and enjoy life a bit more.
My oncologist told me about the Ca125 level at the start and said for me it was a good marker along with CT scans, he tells me if it goes up or down, even when I wasn't on treatment he told me my levels so worth asking the question, but you are right don't worry about it, onwards and upwards to a long and happy remission 😀 xxxx
Hi DK, reading your notes it look like you are going to have good news, wonderful, so pleased for you.
I have had to have a weekly blood test at my gps to make sure that bloods are OK for chemo the next day, they don't regularly do the ca when I see the oncolgist. So I ask the nurse after each 3 cycles at my gps.
It's a very good marker for me and I started at over 11,000 and I would not found out that it had levelled off and started to rise if I had not been doing this.
And I have reasons from the past to keep an eye on it and be pro active.
All the best and look forward to hear your good news.
My onc does them regularly as he knows that I prefer to have the info than not. At present doing every 6 weeks. I went from 2662, 995,460, 280, 190, 95 and 75 after chemo. 6 weeks later at 137 and onc has ordered a scan and get results tomorrow. X
CA125 has been the bane of my life from the beginning. Some oncologists don't like doing them regularly as they say they can show false positive or false negative. It appears that some women can have Cancer and be between the normal range of 1 to 36. Other women may have high CA125 for other reasons particularly younger women. In all cases they prefer to go by symptoms and other tests such as CT scans. For me who had a count of 8000 at diagnosis which came down in 1000s after each chemo then as far as I was concerned I was someone whose CA125 showed a true reading. My CA 125 was never checked from one year after completion of treatment in Oct 2012 to 2015 when my new GP saw how stressed I was and did it. Now that I am back on the bandwagon again I hope I win the battle to have them done regularly
For you it would be an interesting question because you have always been within the normal range . I will be really interested in what answer you get . Stay happy and smiling
Congratulations on the end of your chemo, it's a strange feeling isn't it, I wasn't sure if I was happy, scared, relieved or all three! I finished two years ago and was on three monthly checkups for two years now I've gone to 6 monthly. I have not had a scan for over two years, at my checkups, they do a bit of prodding and one blood test my CA125. I protest every time I go as waiting for the result I find so stressful; I have asked just to be monitored on symptoms, but my Onc says no. I was 2c at diagnosis and was part of the Icon 8 trial. My CA125 was around 450 before Op. I don't know what it is now and don't want to know! My Onc knows my bury the head in the sand approach and only tells me what I need to know. It seems that every hospital is different, for me, I would prefer to be monitored on symptoms only. Although I know, other ladies prefer to know their CA125.
Enjoy your life chemo free for me my diagnosis has completely changed my outlook on life, I enjoy every single day, one thing I would recommend is to eliminate stress from your life, I gave up my very stressful job and work from home now, a lot less money but much more enjoyable.
You are so right it's very hard to describe the feeling when finishing Chemo! I feel elated one minute and scared the next! I also agree that my perspective on everything has changed drastically! I love my job and I know I am very lucky to be able to say that! It can be stressful but I have learned not to allow the stress to get to me and I now have a very relaxed but still diligent attitude to work which I think will work for me! I am looking into doing a 4 day week when I go back as you said less money but less work too!!!
Thanks a million for your message it was really positive and I hope to feel like that in a couple of years time too! Long may it last for us all!!!
Onwards and Upwards!!
Dxx
Hi Dk an important question for your oncologist would be if your particular cancer cell type is known to be responsive to the tumour marker Ca125 as unfortunately not all are.
Thanks Mary Rose I will put that question on my list! He did mention at the last apt that as the cancer cells were contained in the one ovary they might not have had time to register the protein for the marker which is good I think!!! My cyst was complex and mostly fluid apart from cells on the edge which were the cancer cells! I am just curious now as the marker has gone down during Chemo so lots of questions!!!
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for me my diagnosis has completely changed my outlook on life, I enjoy every single day, one thing I would recommend is to eliminate stress from your life, I gave up my very stressful job and work from home now, a lot less money but much more enjoyable.
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