CA125 up to 2683 but I am asymptomatic - what to do???

Hogging HU at the moment, especially after my midwifery in helping to deliver my grandson.

However during my last oncology appointment on Thursday I was told that my CA125 has risen to 2683 and that I have small volume disease in the liver and spleen and also in the lymph nodes.

The oncologist said that it's not a question of IF I need chemo its a question of WHEN!

The mixture is Caelyx and Carboplatin and I am booked for a PORT.


Any advice on a PORT? How to look after it? Anything special needed? Did you have any problems? How long have you had it for? A gine know hoe long it can stay there for? I had a PICC 2ns line, but it was soooooo itchy I had it removed at the end if treatment.

My CA125 went up to 6600 when I had my 2nd line - what do you think about CA125 and the number? I don't want to start chemo but worried about the high number. I know some ladies have had very high CA125 levels.

Some sites advise start a.s.a.p. and others advise to wait until you become symptomatic. I must admit I am feeling well at the moment and don't want I spoil it.

What a dilemma.

Thanks for helping, Irene xxx

25 Replies

  • I am a big fan of Ports. No special treatment except having it flushed every 4 weeks. I've had mine two years and would highly recommend it. As for starting treatment thats a trickier subject. I personally am a start straight away kinda girl but I understand that there are plenty of women on this site who watch and wait so in the end its whatever suits you.

    Congratulations on the birth of your grandson and wishing you the best for your next round of treatment whenever it happens.



  • Thanks Trish. Glad you recommend the PORT. It's nice to hear from ladies who've had no problems.

    I've got some thinking to do about 3rd line. The onc is happy to wait and if she said to start straight away, I would take that advice.



  • Congratulations Irene bet you are busy.

    Just read Trish's post I have had the Hickman line in twice, and it has just come out yesterday.

    But I do fancy the Port now having read, it is flushed every 4 weeks. Hickman is every week, which is OK if your chemo is every week, This time mine was every 4 weeks and it is very limiting you seem to be committed every week no respite. So I shall take that advice on board.

    Re the cA125 I have come to the conclusion that these can be from 3- to thousands, It seems to still remain a talking point with few answers.

    Good luck with the treatment, I have just completed it and scan says a reduction so I am chemo free!! for a bit anyway.

    Regards Barbara. X

  • Yeah every 4 weeks Barbara, so its quite brilliant. I honestly wouldn't be without mine. No veins to panic about every blood test and CT scan is now easy and stress free (well stress free about needles and veins etc). No problems with it at all so far.

  • Great news Barbara that scan shows reduction - that's all we ask for, that it reduces or doesn't spread. I have a date for my PORT to be fitted on 13th Feb. I am going to ask for another CA125 blood test when I go and see what it is after a month. I will then speak to onc or CNS and see what they think.

    CA125 certain is a talking point. I know a lady whose count is 16 but has a spread, so I am not sure how accurate it is.

    Take care and enjoy being chemo free for a long while xxxxx

  • Hi, I am like you, its back in the abdomen, and a couple on the liver, haven't been told the sizes and where, and I don't ask, its bad enough knowing its back. But like you, very well in myself, so it would have been, see you in 3 mths or I had the chance of trial which I took. My oncologist is a big fan of watch and wait, and I have read alot about it, and of course he is right. It is very difficult to live with, wondering if its going walkabout to other places as well but I have been told if the chemo is going to work, it will work everywhere when you have it. God knows what my ca125 is, I don't get told and I have not asked yet, giving time for the trial treatment (if I am not on the placebo) to work. As long as I am well I have managed to put it to the back of my mind and get on with life but don't plan to far ahead. My scan in March will decide if I have to come out of the trial and go on chemo. On the American site it seems to be a mixed bag of watch and wait and straight onto it as soon as there is any rise. My oncologist said I have to bear in mind they get paid to do more treatments over there. In my reading and as he says it does not exend life to jump straight on to it, as long as you feel well. The longer between chemos give your body a chance to recover. Sorry if I am rambling, have a new pc, windows 8, its all over the place and I can't see how much I have wrote without losing it. Hope aything in the post helps. Good Luck , Trix

  • Yes I tend to agree with you and your oncologist about the USA. They all have private insurance and I am sure they treat just to get some $$$$

    What's the trial you are on? Is it third line?

    My first was paxitacel and carbo, 2nd was gemcitabine and carbo plus Avastin. Now looking at Caelyx and carbo.

    Good luck with the scan in March, take care, irene xxx

  • Hi Irene, my first chemo was carboplatin which gave me nearly two remission, 2nd was carbo/taxol and that was nearly two years ago and I had a complete response, all gone. The trial is called Trioc but the vaccine is TroVax. Injections involving T cells to get your immune system to kill cancer cells. I have had 3 so far and but since the last one I have suffered with gas quite badly so I just hope I remain well enough to stay in the trial. Best wishes Trix

  • HI Trix, my onc has the same idea that it doesnt extend your remission if you jump straight in. Well I am a good advert for that because my first recurrence wasnt diagnosed for six months. At that stage I had lost a stone in weight, couldnt sleep with the pain and as you have read before referred to a rheumatologist who ordered mri/ This of course showed the cancer back and then alarm bells rang in the gynae clinic. So I am here, I did get through the treatment although I thought I wouldnt due to weight loss weakness and tiredness. I got through it and went back to work, and have had a small recurrence twelve months later in one spot which was treated with rt. I have had chemo again since then finished almost a year ago and on Avastin for maintenance which seems to have worked so far so good. My onc likes to give your body time to recover and the longer you can stay off the treatment the better but I ultimately go with the flow as onc is a lovely man and you have a level playing pitch.

  • Hi Izzystep, I hope your little grandson is doing well, I have always believed in my oncologist and I go with the flow. As you can see my other reply to Trix, I believe in him entirely. I did have a bad experience with my gynae team on first recurrence and now I am wondering why didnt I get my gp to go to oncologist instead. However I am here to tell the tale so wont bore you with more details. I know you probably want some quality time for a week or two with you new grandson before starting treatment, that is natural. I am sorry you have to start treatment again but after a few months you will be able to enjoy the summer with your grandchildren try and think of it that way.

  • Thanks Suzuki. I also have faith in my oncologist and wouldn't do anything without her say so. I feel well and yes I do want to spend quality time with my two grandsons.

    My dilemma is do I start whilst feeling well or do I hold off until my CA125 goes up and up or do I crack on and as you say get it over and done with by the summer. if I start early March I should be finished by early July.

    May talk to've got me thinking.........

    Take care, Irene xxx

  • Hi Irene, as you know I am on wait and watch since September. I was scanned again mid November and it showed only minimal growth in the 3 pelvic lymph nodes but also showed a 4th lymph node now involved as well as a soft tissue tumour between right kidney and liver, still small so remaining on wait and watch. The oncologist feels that while I am well, no point rushing into treatment that is likely to make me feel unwell and I have to agree with her. Dreading the side effects when it does eventually commence! I suffered with pains in legs, mouth ulcers and a blocked bowel with first line! :(

    As far as my CA125 goes, apart from the first rise in August last year, I haven't got any of the results. My oncologist said its best not to as they will only be going one way and you can become fixated on them and cause yourself lots of worry. I must say, I agree with that. I did become fixated on the result whilst on treatment but that's different, as a lowering figure reassures you that treatment is working. I think seeing an ever increasing figure would drive me mad with worry. Of course like everyone on wait and watch you do worry, wondering if there is much growth etc but what you don't know doesn't hurt you with regards blood resultd., they will after all be keeping a hood eye on you with scans. My next one will be mid Feb. I am Hopi g I can get another 3 months without treatment after that one but time will tell. In the meantime I am trying to build up my core strength as nd enjoying life while I can.

    Good luck. Ann xo

  • Thank you Ann, you always give common sense advice. It puts things into perspective for me. To hear anither lady in the same position.

    I have small volume growth in/on liver and spleen. I think I ask too many questions when I go to see the onc. I want measurements, CA125, where, what type etc etc. this time I haven't asked how big the growths are but still like to know CA125. I am not having another scan so I think this is the only way they are measuring it.

    Watch and wait is a worry - I have a parastomal hernia which gives me great pain at times and it's hard to decide whether little niggles and aches in the abdomen is the Cancer or the stoma. I have a very high pain threshold so may not notice signs.

    Good luck with your scan in February and lets hope for more than 3 months without the need for treatment.

    Take care, Irene xxxx

  • I know what you mean about needing to know everything. When I saw the cons surgeon for the very first time and he showed me the cysts and ecplained the need for more tests, I was a bit shocked and didn't ask too many questions. However being a medical secretary when I got home I was straight into the medical dictionary and then onto google, although I will admit I stuck to the NHS website (I did follow my own advice to patients on that one lol). I asked questions of him when he phoned to tell me results of scan and bloods. Notably however he did not tell me the actual result of bloods just that it was very raised. I found that out at my oncology appointment following surgery. From that point I was fixated on it. When it came back and the oncologist gave me her advice, it was a real test for me as normally I like to know everything too but I am glad I stuck to her advice. I believe they have our best interest at heart and of course our wellbeing, and will guide us appropriately. If they thought for one moment that chemo could not wait they would have us on it straight away.. While the tumours (or sometimes described as nodules,) are small, the wait and watch approach is the way forward, especially if the patient is exhibiting no symptoms. Like you I too have a fairly high pain threshold and wonder if I will miss something because of it, let's face it I missed any symptoms there might have been at the outset of this all but so far so good. I expect having the hernia is a difficult one but you need to be aware of the hernia pain and what it feels like,to compare it to any other pains you might have.

    I have been going to a Pilates class at our Macmillan centre and the teacher is a great believer in deep breathing exercises. I have used this technique when having trouble getting off to sleep. Breathe in through your nose for a count of 4 and out through your nose for a count of 5/6. She tells us to focus on any area that is giving us pain at the time. Its my shin bones that tend to bother me and I find it works. Give it a try. All the best. Ann to

  • Thank you again Ann. I wil try the breathing technique as I do have trouble getting to and staying asleep. I am having counselling at my locals hspice and reki which I feel are benefitting me.

    i am doing my hernia exercises regularly and hope that I don't get the pains again.

    Take care, Irene xxx

  • Hello again Ann (and Irene). Having read this I'm wondering if my Mum is doing the right thing in starting her next stage of chemo ASAP. She said she wanted to. On 7 Oct 2014, during her first 3 month check her cancer cell count was 'back to normal'. But then on 6 Jan, following a blood test, her CA125 had gone up to around 325 from 14 and she had a CT scan. There was a 19mm growth near pancreas and a "small amount" of cancer cells in the lymph glands, plus a recurrence of the ovarian cancer. CA125 is still rising and she is due to have her first chemo on 13 Feb. I guess this is known as 2nd line as she's already had 7 initial chemos as well as debunking surgery. She says she is still feeling very well. It's tricky isn't it. Jane x

  • I have had a PICC line fitted, it seems comfortable, just have to be careful showering, The Community nurses who had to check it manoeuvred it so that it came out of position from the vena cava but the Headland Centre at Treliske, Truro are on the ball and spotted it but I had to have it taken out, they tried to insert it into the basal vein but it hit bone, had to leave things for a couple of days to let the original vein settle down but it has been put back into the basilic vein and the chemo I had yesterday, which consists of Avastin, Gem and Carbo went in uneventfully. I shall have my mid term scan in the next couple of weeks, I am not really worried about it fortunately. I shall be reading the site 'Canceractive' which has been recommended!

    Cheers, Gio

  • Thanks Gio.

    Not heard of the site 'cancer active' but I will have a peek.

    My PICC itched like mad!!! I never had a problem with it coming out as chemo nurses flushed it and changed dressings. My concern was I would wake in the night madly scratching the area and although I had the dressing on and an elasticated armband I was worried I would pull it out. I left it in till I finished my treatment and then had it taken out. It was heaven to not be itchy and to shower/bath without cling film lol.

    All the best with your mid-way scan. Irene xxxxx

  • Hi Irene, The question of when to start chemo is definitely a dilemma and I am not so sure there is either a right or wrong answer. However, having lost Angie on boxing day I must admit I keep wondering, 'What if?' Don't misunderstand me, Angie made her decision on this question having considered all the possibilities and following guidance from her onc and I am content that is exactly how it should have been. But, it doesn't stop that, 'What if' itch.

    Angie never actually had any remission. She ended her second line chemo in October 2013 with substantial residual disease, but with tumours that had shrunk significantly through the treatment and a massive drop in CA125. The CA125 was measured frequently from that point but continued to fall even after treatment finished. She felt well for about 9 months, but knew the cancer was on the move again after about 6/7 months. She opted to wait, trying Tamoxifen as maintenance until symptoms became less tolerable and finally starting again in August last year with the same chemo (Caelyx) that had done so well before. It didn't work at all and by November the progression was so bad that any further treatment was not an option.

    Now I would not presume to say Angie got it wrong; we had no crystal ball. But I think it's obvious to see why have this 'what if' itch. Would the progression have been so bad had she started the treatment earlier. Would she have been able to switch to a different regime if it hadn't progressed so far? Of course, i can't and never will be able to answer such questions. I have to remain content that the decision made was right because it was Angie's to make.

    I hope I haven't muddied the waters more, I only hope that those faced with this dilemma are able to consider the options fully and are able to make the right decision for themselves.

    Good luck

    Andy x

  • Thank you Andy and may I offer my condolences to you and your family on the loss of Angie.

    You certainly haven't muddied the waters, in fact you have made them slightly clearer. It's not a question that I have thought to ask the oncologist regarding progression whilst not on chemo and would having chemo reduce progression or the chance of it spreading. I feel an e-mail to her may beneficial.

    I know we don't have crystal balls and there will always be "what ifs" crossing our minds. I try to remain positive and look at all angles before deciding on what to do. This is why HU is so important, it gets views from every angle and although every lady is different we do have OC and similar diagnosis and treatment. It's nice to see I am following the "pattern" of regimes so many others have and I am getting the right treatment from my hospital.

    Take care, Irene xxxx

  • Oh Izzy I'm so sorry to hear your news, I'd go with the chemo, I had no symptoms but had two forms of cancer uterine and ovarian glass cell, both pretty advanced, they were found after an ultra sound scan for something else. Can't advise you about lines etc I just had a line in my hand each time but by the last one it had to go in my wrist. Thinking of you, let me know how you get on xx

  • Thank you Totty. I can honestly say I've thought of nothing else all day.

    I had such bad side effects 1st line, not so bad 2nd time but really worried about this time. It's a new concoction for me so I am scared it will be bad again.

    I feel so well at the moment and am loathe to do anything to spoil it.

    I'll let everyone know what I decide

    Take care. Love irene xxxx

  • Hi Irene,

    I had Caelyx and carbo as was allergic to paclitaxel so they switched me to Caelyx. I did not have any side effects whatsoever, felt well, maybe a bit tired towards the end but not that bad, was able to go out and about and do normal stuff just took it easy in the evening as per no change there really! Get to keep your hair too although I read hair loss can affect a few people.

    Re the CA125 they do not do them at my hospital nor do they do routine scans. Their policy is symptoms based only patient contacts them. Based on that you would be non the wiser and just enjoying yourself being a part time midwife, Lol. I think there's a lot to be said for carrying on enjoying yourself being symptom free if the ONC is in favour of this, but its a personal decision at the end of the day and its your choice. Sending love and kisses xxx

  • Thanks for that kazrazmataz (love the name :) )

    There's an old says "what you don't know won't hurt you" and I suppose in your case at your hospital it's true.

    I can't do anything about my CA125 rising and as long as I remain well the onc isn't too bothered. I will rely on her expertise and listen to her advice.

    Good to know you didn't have side effects. Not too worried if I loose my hair, I have some lovely beanie hats and a decent wig, I will use the pm again.

    Take care, Irene xxxx

  • Thanks for your comment about the name, my stepson gave me this nickname years ago and its stuck (he lived with us) I like to live up to my name x

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