Help Please?? Mum's CA125 rising again after 2 months

My Mum aged 71 was diagnosed with Ovarian Cancer last September with a CA125 of 1440. She had 4 rounds of chemo Carboplatin up until Jan 2011. In February she had surgery to remove her womb, ovaries, tubes, omentum etc. then had 3 more rounds of Carboplatin. After the 7th round her CA125 was 29. She was told to wait 3 months and have the test repeated. Up until last week Mum had been really well, back to her normal self. But then she started getting pains in her stomach again so went to her GP. They ran blood tests and CA125 came back at 225, to say we are disappointed is an understatement.

Has anyone else had such a short time before CA125 started to rise?

What was the treatment 2nd time round?

Any help / advise would be much appreciated by Mum and myself.

Kind Regards

Sue

22 Replies

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  • Sorry forgot to mention, she has her 3 month hospital appontment for next Thursday 21st July.

  • Hi Sue,

    Of course you are disappointed - your Mum must feel devastated. I think the next treatment will depend on how she responded to carboplatin. If that was good, they might do it again - or suggest something else if her response wasn't so good.

    She would do well to direct her diet to anti-inflammatory foods (green tea without dairy milk -soya if needed, turmeric mixed with black pepper in olive oil as a basis for stir fried veg, ginger, etc). It's a good thing to avoid sugar, as it can 'feed' cancer - substitute xylitol - it's lower calorie, low G. I., and GOOD for your teeth. Avoid dairy products which aren't from grass fed herds. All the above will help to support her immune system - sleep, exercise, and remove stress - not easy with this to deal with, I know!

    Very best wishes and every hope she responds well to the next phase of treatments- medical and lifestyle.

    Isadora xx

  • Dear Sue

    I am one of the support line nurses at Ovacome. Please do feel free to give us a ring to tlak things through or send us an emal. Our number is 08453710554 Mon-Fri 10-5. Although with a rise in the Ca125 combined with abdominal pain your first thought is that it is due to ovarian cancer do remember there can be other reasons for it being raised. It is likely that they will arrange for your mother to have a CT scan to see if and what is going on. If there is evidence that the cancer has returned and to help relieve the symptoms she is experiencing it is likely that they may suggest a different form of chemotherapy as it is not that long since she finished her other treatment. There are quite a few other chemotherapies that can be used in ovarian cancer. It can be devastating when there are concerns that the cancer may have returned and that someone needs further treatment, try and take a stage at a time. It is often helpful to make a list of questions you may want to ask when your mum sees the oncologist next week

    Best Wishes

    Ruth

  • Ruth

    Thank you for taking the time to reply. Mum has also had the bloating feeeling again as well. Her GP could not feel anything when pressing on her stomach she said it felt soft. Also Mum has had problems with her thyroid, 1st bloods done to check this was last week since starting chemo and that came back abnormal as well, she needs to up the medication to get that under control. Due to see her Gyne next week so hopefully will get more answers then.

  • Thyroid glands do seem to be particulrly sensitive to the effects of chemotherapy. I do hope that they are able to sort out her medication soon and that she is not experiencing too much discomfort. It is very difficult when you are in limbo and not quite sure what is going on. Do give us a ring if you want to talk things through

    Best Wishes

    Ruth

  • my mom had similar treatment to yours, 3 chemo then operation then another 3 chemo, she was doing fab and for first 3 blood tests after the end of chemo. They were about 30, 80 and 80 the docs were happy at this but within the next few months she started to feel tired and eventually started to feel sick and even struggled to take her tablets. The docs did another blood test and it was 600 followed by a scan, she was found to have multiple small tumors in the abdomen the largest was only about 1.5 inches in diameter.But due to bank hols etc she had to wait for about 5 weeks to be restarted on chemo and this was the same carboplatin and paxataxol as previously. Her tumor markers after first chemo came back at over 1077 and are now 870 after the 2nd they are happy that she is responding for a second time and the pain and tiredness seem to be subsiding. she had her 4th session yesterday so hopefully the next results will be even lower ca125 levels. all the best to you and your mom xx

  • Thank you for the reply, we were so concerned because of the short time before the number started to rise again. With the surgery they could not remove everything so we did expect an occurance but not quite so quickly. Mum was offered Taxol with the Carboplatin when she was first diagnosed, but the Oncologist could not give here any reasons to take the 2 together, so Mum opted for just Carboplatin. Maybe this time they will argue the case for Taxol.

    I hope you Mum continued to respond and has a good remission, my Mum is also my best friend we are so close, she is the only family I have, with the exception of my husband and son, I have no brothers or sisiers to share the worry if you know what I mean.

    Take care

    Sue

  • I refused Taxol when I had my chemo - the Oncologist said it did 10% of the good with 90% of the damage, which didn't sell it to me. His reaction (after he got over my having my own opinions) was, 'oh, well; if we have to give you chemo. again, we'll still have the combination to try!'

    She's very luck to have a best friend in you Sue, as, I'm sure you are in her.

    Best wishes,

    I. xx

  • Isadora,

    Thank you for your mail. Unsure as yet what the next course of action is, Mum seems to think she will be back on chemo next week, I have told her I would expect them to do a CT scan first.

    Sue

  • hi sue, my mum is also my best friend which makes this even harder. the delay with bank holidays meant that she went downhill quickly and at one point we didnt think she would even make it to the chemo, she lost a stone in weight and had a lot of pain. but on the bright side she seems to respond to the chemo. i think the normal route is the combined therapy carboplatin is supposed to bridge the dna in the cancer and kill it and taxol i think is supposed to stop the tumour growing, and i know in the midlands this is given as the norm.where are you living? i would ask for the combination if you can get it my mom was a stage 3c too and due to fantastic treatment from the oncologist and a 6.5 hr op which took her womb, ovaries, 2 bowel resections and the omentum, hopefully she will gain extra time to enjoy life. i also feel that it helps getting more regular blood tests and keeping an eye on rises in ca125. i hope you manage to get the treatment that will give you and your mum some quality extra time.

    all the best

    sue x

  • Sue,

    My Mum is in Hampshire, so goes to Basingstoke hospital. At the first meeting with the oncologist she could not give a good enough reason for the Taxol, yet what you have said would have made a difference, if it is the case and Taxol stops it growing. Will definetly ask about this at the meeting next week. Mum lost no weight but gained alot. This did no go down even after surgery, I kept saying she should get her thyroid med's checked, in the end she has and it is all over the place, so now Mum has to start taking extra to control this. No one said chemo effected throid tablets, yet you would think this to be important, even her GP did not know of this. Mum has had no real staging, like getting blood out of a stone, I think she was 3c though.

    Hope all goes well for you Mum, they are so special.

    Take care of yourself

    Sue

  • i am so sorry you seem to be going through the mill, i know its hard and you can feel unable to do anything constructive, it sounds like you are a major help and support for your mum and i'm sure she is really grateful to you. have you asked to be referred to macmillan? they can be a great support to you and your mum, in this area we also have a day hospice that she has started to go to where there are docs and nurses that my mum can talk to if she has any areas of concern. i am unable to comment on her other medication but any meds can react with other meds. is your mum suffering from ascites(fluid in the abdomen?) as this can be a reason for weight gain, 1 litre of fluid weighs 1 kg.

    all health care authorities have a certain budget for chemo etc and maybe this is a reason for the difference in treatment! i found the cancer research site a great place to get info on chemo and any clinical trials etc.

    i can completely understand what you are both going through.

    i hope you have a more positive experience with the oncologist.

    take care sue x

  • Sue,

    At no time has anyone said anything about ascites, no fluid has been drained, whenever she is examined she is told her abdomen is soft not hard. To be honest Mum gets fed up with people saying how well she looks, as sometimes she does not feel that way. But she does look good, she has decorated her kitchen and lounge in the last few week and I wondered if she has overdone it, I did tell her she should not be doing so much, but she has always been active and I know if she felt rough she would take it easy. As they say you cannot keep a good women down!!! Living 60 miles away I cannot keep an eye on her as much as I would like, but I do try and go to all the appointments at the hospital. I think next Thursday will be a waste of time as she is seeing the gynecologist not the oncologist, I expect him to say the same as last time, " I will hand you over the the Oncology dept", Her oncology doctor only comes to Basingstoke on a Thursday so we do not expect to see her next week as Mums appointment is not till 3.30pm. He may well ask for a CT scan to be done in the mean time, I suppose we will just have to wait and see.

    Sue

  • that does sound positive, my mum hasnt suffered from ascites either, and her abdomen is now soft, the oncologist was pleased as he must have felt tumors on her first visit since the relapse. your mum and mine sound very similar in their view of life she is also very positive and keeps talking about holidays after treatment she also decorated her bathroom when she was in her 12 months remission period. the attitude they have will help, as some people just give up when they are told they have cancer.

    they may well get a ct scan , the experience we have had , they did scan when her levels were about 200, and that was when largest tumor was 1.5 inches, the annoying part was why they didnt start chemo then and why it took nearly 2 months from the scan. remain positive like your mum and do ask questions to the oncologist as many wont volunteer information.

    my mum looks great now and has put on weight, its now just the lack of hair that you know shes on treatment, she wont even wear her wig and goes around bald. if people look at her strangely she says its their problem and doesnt care what they think.

    sue x

  • Sue,

    My Mum is different she hates the idea of losing her hair. After surgery Mum was told they could not remove all of the cancer, and after the last lot of chemo the scan showed she still had a 1cm bit left, plus all the little bits they could not get, not surprising the cancer is growing again really. I think now though Mum would go for the Taxol and get a wig. There are questions I would like to ask but when I get in the hospital I look at Mum and then cannot ask what I want to know, especially when she is looking on the positve side. Very difficult at times, but you obviously know all about that.

    Sue

  • yes its very difficult, is that what put her off the taxol? losing her hair. mum has a few tufts of hair and hasnt lost her eyebrows or eyelashes, so when she has a wig on you cant really tell it is a wig. they do pretty good ones through the hospital and theres no charge unless you go for a real hair one then its around £200. my mums scan after all the chemo 1st time (last may she finished chemo) showed no little bits of cancer but from xmas she felt more tired and the bloods showed a rise in levels. so she didnt really have much time cancer free.but they didnt scan again till level went to 200ish and by the time next levels were taken it was 600. it seems like from what docs say even if you show no cancer if it is going to come back its normally within 12 months.

    i feel that you may be best to talk to someone from macmillan they are there for both of you and will give you some answers. your mum is probably worried in asking things in case they tell her something she doesnt want to hear. a lot of people refuse to look on the black side and both of our mums think in the same way it seems.

    sue x

  • Sue,

    Losing her hair was one reason, the main one was the oncologist did not give a good enough reason for adding taxol, no information about how others had done on Taxol. The oncolgy doctor was not very approachable at our 1st meeting, like getting blood of of a stone come to mind. However nearly a year on I think we are more prepared this time round in respect of what questions to ask etc.

    Sue

  • i'm sure you will get answers and if your mum keeps positive its a good thing, let me know how she goes at appointment.

    sue xx

  • Hi there, I had carboplatin and taxol first time around, I was told this was the gold standard treatment, ie first choice, so long as the patient can tolerate it. I went 4 months in remission then it came back.. I've been on 2 other chemos since, caelyx, which did work for 3 treatments then CA125 went up, then avastin again worked initially then stopped. Two weeks ago I've resumed weekly taxol and carboplatin. Ive read some reports on this and in Japan they have done extensive studies and results look good. Giving it weekly is easier for the body to tolerate, and they are able to give you a larger dose so it has a better chance of getting to the cancer (I believe!!). I don;t read too much on these things, but unfortunately since my recurrence it's forced me to learn a little more. I had the ascites too, and it's extremely uncomfortable, some ladies get it and some don't. Doesn't seem to be any rhyme nor reason to it. But you can get it drained and it will make your Mum feel much more comfortable if this is what it is. Ask lots of questions, even if you see the oncologist separately. They are very blunt... I always told mine I never want to hear timescales, mainly because I'd be terrified, but also because I know it's just a number! I know lots of people who were given 'time' and are still here today many many years on!! (Lance Armstrong for one!) I've been well pretty much throughout and worked full time for the last year, although I've been on chemo!! Seems we are treating this as a chronic disease now, manageable but not cureable (but hopefully will be one day!!)

    Good Luck!!

  • gmsk,

    It is good to hear from others who have experienced the same sort of results, but I am sorry you have had this awful disease. I wish you good luck with your treatment.

    Sue

  • Mum saw her oncologist at the hospital yesterday, they have ordered a CT scan to see what is going on. Mum was told no Carboplatin this time as the remission was less than 6 months so this chemo obviously did not work, even though her CA125 was 1440 at the start and 29 at the end of 7 rounds, ( Surgery after round 4 ). Only symptoms so far are bloating and the pain returning in the abdomen. Looks like Taxol only for the next course of chemo. Anyone else had similar results and had Taxol only for the reaccurance? Did Taxol give a better remission time?

    Thank you all for your replies.

    Sue

  • Mum has now had the results of her CT scan, the cancer has started to grow again as we thought. She is due to start Taxol on the 2nd September. Has anyone else had the same at aged 71? We have sorted out a really nice wig for her and some scarfs as this time she will lose her hair. She had been truly remarkable thoughout all of this, she puts on a brave face. Another lady she knows is also on Taxol, and told Mum that after her Taxol treatment her stomach blew up like a balloon, Mum said she looked really poorly, this came as a shock to Mum and the 2 of them were on the same treatment last October.

    Any help / advice would be appreciated. There is no support group at Basingstoke hospital for Ovarian unlike for Breast Cancer.

    Sue

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