Excellent CT scan but soaring Ca 125

Morning ladies... Gill back on the blog after a stint in hospital ( again) back from South African safari on the Friday, abdominal cramps started on the Sunday! Phew I could have been in the middle of nowhere, but SO glad I took the risk (4000) pictures of safari animals very close even around the jeep ( lions) . Had an pre planned CT scan on the Tuesday following Alvastin.... Was vomiting by this time and knew I was starting to get bowel obstruction. Had one 5 months ago and this was due to ovarian tumours heavily invading the outside of the bowel. My oncologist said the MRI scan showed this and on outside of my liver! Here we go again I thought....... We resolved it with steroids and chemo last time.... Them my oncologist took me off chemo after 4 rounds saying I was platinum resistant as ca markers had stayed at 265.. They had gone up to 900 with the obstruction.

I was feeling good and it was she who told me to go and have a holiday whilst I was well!

So back to the new obstruction, the CT scan said my small bowel was obstructing, but there were NO tumours!!! How fab is that... It made the obstruction feel ok and manageable , it was due to adhesions from the surgery ( pelvic clearance) ... Can' t tell you how elated I felt... I will discuss this with the oncologist, as the chemo probably had been effective, just doesn't show on the blood. I am taking the ibrufen regime, and reiki mushrooms... Something is working xxx thank you angels/ god or whoever..... There is a big but though....... When being discharged the surgeon gave me my report and my ca125 is up at 1500!!!!

So my question to the forum is ... Has this happened to anyone else? How can the markers be sky high but the CT scan so good????

I am still nursing my tummy, it is very irritable. The surgeon said if I get cramps (which are like labour pains) I should go straight onto clear fluids to rest the bowels and aid it to get untangled. Adhesions are tissue strands like clinging spider webs which come with surgery and infections like endometriosis ( had that too!).... So today dear friends I am back on water ( did enjoy the pizza hut experience last night! Paying the price)...........

23 Replies

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  • Dear Sue

    I've been thinking about you a lot lately and wondering if everything was OK on your holiday. You are a testament to positive thought and action and sometimes there's no rhyme or reason to why that should affect cancer but I truly believe it can.

    I'm so delighted/relieved you enjoyed your holiday and hope you will be posting up those photos on your blog. I have a huge admiration for your pluck. Thank goodness the cramps started after your return. Could it have been exacerbated by the flight home and perhaps sitting in rather a cramped space for a long time.

    You'll see from Nicola's (Orsolini) question that the CA125 can soar and yet scans can be clear. Let's hope the tumours remain asleep for a long long time.

    It does seem Ibrufen can work for some women. I wonder if other anti-inflammatories work as well - perhaps you could answer that question - I'm taking Naproxen 500mg at the moment to deal with a knee problem and don't want to OD on Ibrufen as well if it's not necessary. I've not heard of Reiki Mushrooms. What are these? Sound interesting.

    I'm going for a consultation with a naturopath oncologist at the Leaders in Oncology Care in London in April. It would be good to get some holistic advice on what might be helpful. My daughter's coming along with me to take notes so I'd be happy to share anything I find out.

    Poor old thing having to just drink clear fluids - but wait - does that include G & T? That might cheer you up a bit.

    Loads of love xxxx Annie

  • Hi Annie,

    I think they are "Reishi Mushrooms" they are meant to help with the immune system.

    Love x G x :-)

  • Thanks Gwyn, I've looked it up now on Google. Apparently they're known as the Mushrooms of Immortality. Not sure based on that nomenclature that they live up to their name!!!

    Thank goodness I'm seeing a medically qualified oncologist/naturopath soon who might be able to guide me through this food fad maze.

    Lots of love - must ring and have a natter soon. xxxx Annie

  • I did reply to this Annie, but it didn't upload for some reason. Did you get all the info i wrote on the supplements I wrote? Not sure if I posted it here x lol x happy to write out again... And the reishi mushroom info?

    Did not reply about the naproxen... As this is an anti inflammatory it should do the same job x best check with drdu.

  • Hi Gill,

    I haven't seen anything from you on supplements and reishi mushrooms. Is it an idea to email the information?

    I was wondering how your East Berkshire Support Group is going and googled it. It comes up fourth on the front page so you've done really well with setting up a website. I'd love to know how you do that. Any tips or pointers you can give me.

    Yours is the same day as ours - last Wednesday in the month. We've organised a room in a hotel which is free of charge at the moment but I'm sure they'll want a fee in time. What sorts of things do you do? Is it a drop-in type of event? Yours is a bit more ambitious than ours being a 3-hour window.

    Chris (Darragh) and I are putting up a static display for Ovarian Cancer Month in our local cancer centre and they've agreed that we can sit there with our interactive demonstration of this site in the waiting room on the days of the Ovarian Cancer follow-up appointments so that'll be our way of telling women about the support group as well. Apparently the Velindre are giving out our flyers but you never really know whether they are. We haven't had any calls about it yet. I think a web presence would help.

    Sorry to hijack your blog. I should really have emailed but thought the discussion might be interesting to others who are involved in setting up support groups.

    xxx love Annie

  • Hi Gill, the holiday sounds wonderful, an old friend used to always say memories are better than dreams, and Im sure you will be able to revisit them often with your wonderful pictures. Doesnt it make you grateful for the digital camera how much would it cost to get all of them developed. I was a midwife in a former life, Im new here and dont know about anything, but send you all my very best, love Karen xx

  • Hi Karen, thks for reply... Pictures are fab and am thinning them down... I will put them on my blog so give it a week and then go and look x www.the-Thomson -family.co.uk,,, SO lovely it warms my heart and yes memories are so important. I keep being battered but my body is strong and will not bow down to this disease :-)

  • Gill, am so glad the first problem hasn't materialised, and I am sure Dr H will work hard to figure it out and get to the bottom of the problem (no pun intended). She's pretty indomitable, as we both know! That ca125 could be way boosted by inflammation that's going on around a mass of adhesions, I would think, and she will investigate every other possibility. Fingers crossed that is all it is and you see it decline soon.

    I did play with Photobucket for an OC ladies photo gallery but the group functions weren't up to scratch. However I cannot recommend it highly enough as a personal pic sharing site and you can when you create an album mark it private, pop a password on this, and snd that and the link to your friends. You have to register but its free and takes under a minute. Sign up link is top right on this page, their new upgraded site beta.photobucket.com/

    I just say this in case we can see a few safari pix ;-) I think we all wanted to be there with you!

    Love

    Sue xxx

  • I replied to this as well! Not sure why they are not getting posted! Hope you have a fab holiday sue with your new underwear and leopard prints x

    Will check out photo bucket thank you.

    Will upload safari pictures to my website and blog... The-thomson-family.co.uk by the end of the week x

    Lets hope inflammation will have caused the soaring ca 125 x good point x

  • Hi Gill,

    Such good news and so glad you enjoyed your holiday best wishes love x G x 8-)

  • Thanks gwyn x

  • Hi Gill! It was so good to meet you a few weeks ago. I, too, have been wondering how the holiday went. I am so glad you had such a wonderful time! Sorry to hear about you coming down to earth with a blow like your stomach problems, however, it's good that there is nothing scary showing up on the scan. Drdru has had some good results with ibuprofen. I expect you read her blog? Anyway, I can do no good at all with your Q, but just wanted to say hello and hope things get a lot less painful as the week goes on. Water is so boring....but great for your skin ;-)

    All the very best

    Love Wendy xx

  • Thanks Wendy x it was good meeting you too x

    Am following drdu's ibrufen regime under oncologists approval x

  • Hi Gill

    I had three episodes of blocked bowel last year and had a stent put in. I also follow a low residue low fibre diet to keep things flowing plus 2 sachets of Movicol twice a day. All things with skins, seeds, taboo. Mushrooms definite no no. It has worked for me as my tumour is pressing on the outside of the bowel thus restricting. The stent seems to be keeping the channel open and I have been discharged by the colerectal team.

    The diet is hard as I loved my salads fruit etc but now stick rigidly to white bread, chips, roast or boiled potatoes no skins, meat (Good thing I am not a vegetarian) and veg mushy carrots, well cooked heads of broccoli and cauliflower but no stalk. Peas Beans and lentils also taboo.

    Worth giving the low residue diet a go I am surprised your team did not suggest it. My last episode of blocked bowel was cleared by enema, Surgeon was going to operate and give me colostomy but enema worked and he did not see the point of surgery at that point.

    Glad you had such a wonderful holiday, looking forward to your pictures; Photo Box also allows you to make albums and share only costs if you have them printed off. I have done one for my sons 40th this year from Christening to present day. Really pleased with the end result.

    Best of luck

    Love and hugs

    Hilary x

  • Hi Hilary.....Second attempt .....stent is a good idea will remember that. My last obstructions was due to same as you, and I cleared with laximol.. Took 6 in 6 hours and it cleared the block. 3 weeks without a mumour!

    Does seem strange not to have lots of fibre to keep the faeces bulky and moving? Would be better than taking a laxative? I am a vegetarian since diagnosis so would have a problem :-). Adhesions are the current reason for blockage as tumours all gone! Surgeon said if get the cramps, to go onto water for a few days and take lactulose daily... If vomiting for more than 24 hrs to be admitted..... Hope bowel sorts itself out x thanks for your reply x

  • Hi Gill,

    My mum has recently too had raised ca125 levels but a good scan. We were convinced that she was having a recurrence as she had been having tummy aches, etc and her oncologist said that it was almost definitely a recurrence but her scan shows stable disease and no progression of disease since her last scan 6 months ago. We were so shocked! But also very happy! My mum is also on maintenance avastin every three weeks - maybe avastin makes the ca125 levels unreliable? She also has been diagnosed with diverticulitis which believe can caused the ca125 levels to fluctuate. So she is continuing with avastin and her oncologist has said we should disregard her ca125 levels.

    She is just happy to have a reprieve for the time being and is getting on enjoying life - im expecting a baby in a few weeks so we are all just looking forward to that now.

    Hope you enjoyed your holiday and all the best to you xx

  • Thanks fly high, I will ignore it as well I think x seeing oncologist next week x she was so doom and gloom last time I saw her, I wonder what she will say this time ! Lol x

  • Good luck with the baby x blessings x my grand daughter was born 18 mths ago and is a blessing in our lives x

  • I have never heard of Reishi Mushrooms before ( only use to the common type found in the £1 trays in Morrisons!). Where can you get them, or are they available in extract form in tablets or capsules?

  • Hi langara, reishi mushrooms are supposed to kill cancer cells. They are grown in china and Japan... The website I have sourced them is haeon.co.uk.... Have a look x

  • Hi,

    I've had two hospital admissions and two near misses with adhesions following my ovca surgery 4yrs ago.If I realise in time, I go straight to fluids and tramadol ! Usually works and things get better in about two days - if I don't I get admitted with the obstruction! Scans have always been clear of tumour very luckily but it does get a bit scary when things get further along and you're on drips, naso gastric and morphine. Glad you got your holiday first!

    Polly xx

  • Thanks Polly x the fluids and lactulose is what the surgeons recommended as well. It has to be better than being 'dripped and sucked' what we call it in the trade.

    Di you find anything agitated the bowel.? Think mine is sitting for long periods..... 1 st obstruction started at end of week of tutorials, and this time after 11 hr flight! Gill

  • Hi Gill.

    Just back from holiday. Would think the raised CA125 level could just be because you had obstruction, and this will have inflamed the peritoneum and put the level up. Hopefully that is the reason. Very glad it was just obstruction due to adhesions.

    Eileen xx

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