Jenny B

I was diagnosed Stage 3 OC in 2008. I have in that time completed three treatments the first two holding my CA125 in a sort of steady category for quite a while. We decided to go ahead with a third line of treatment when my CA125 reached 1900 and I was experiencing a few symptoms. Carboplatin was the drug but it went pear shaped when I experienced an anaphylactic shock so then completed a desensitisation program with the Carboplatin which was finally completed last May. The CA125 only reduced marginally and now the score has climbed into the 2000's but no symptoms so my Onc is happy to watch and wait. Has or is anyone in this situation? Are any of you watching and waiting and what sort of symptoms have you experienced when you so ok enough lets get treatment going again, charming as that treatment is, I now call it my potting mix solution with the odd glass of pond scum thrown in. I am a very positive person, I am too busy to dwell on sadness and I am also a fighter. Learning to play the piano during all of this has been my saviour, I ain't going anywhere yet but it would help me to know if anyone is doing the same. This is my first post ever even after being on the site for a few good years.

19 Replies

  • Have you had a scan? With a CA125 at that level a scan might be a good idea, preferably a PET CT scan, which will show active disease. You've done well to survive for over 5 years, it might be worthwhile to ask if surgery is possible. Usually that's done after the first recurrence, but it can be a very effective treatment if it's possible. I've heard that OC eventually stops responding to carboplatin, but there are lots of other chemos to try. Sometimes carbo can be effective if it's combined with another agent. There's also dose dense taxol, which has shown good results in studies. Finally, you could ask for a second opinion. There was a study that showed treatment is just as effective if you wait for active symptoms, but some oncologists still believe that it's better to start treatment sooner. I hope you find some answers & stay well even after a renewed dose of potting mix. Best, Vxxx

  • Thank you for responding, I shall take on board all that advice. Decided not go down path of second opinions as my onc and I get on really well and I trust him which I think is important

  • Hi there... and welcome. Yes, I'm in the same category. My CA125 has always been within normal range even when I had active disease and ascites to drain. I had a major op in September when I was taken in to have a necrotic tumour removed. It was all very dramatic and it took quite a while for things to heal and settle down. I was told at that time that I had disease progression but when I was re-referred to my oncologist, I was told that I was to wait for treatment. I have a lot of the symptoms of active disease but some of these are down to having a 'drainpipe' bowel due to the disease and to scar tissue in the abdomen. My other symptom is increasing abdominal pain which is being managed with the help of pain medication including a BuTrans patch. I was referred to the hospice for pain and bowel management which has helped me so much. Meanwhile, I am told that I'm under the watch and wait regime until it's absolutely necessary to have treatment which I find scary My C. Nurse Specialist has said it might be good to make the use of the chemo holiday. It's hard but I do keep positive trying to keep my mind active. I'd be interested to know what the treatment is for a reaction to carboplatin. Love Tina x x

  • Thanks for that it is reassuring to read what you have written. In answer to your question re carboplatin just had to go into hospital as an inpatient for three days each time for the six treatments to have the carboplatin administered very very slowly with an IV drip which solved the problem and of course a regime of drugs four days before going in, during my stay and for five days after. Oh the joy but like you keep myself really busy. Onwards and upwards. Love Jenny B

  • Good morning all

    I was interested to read about how your reaction to carbo was treated as this happened to me last Monday - what joy! They will 'challenge' it again next Monday, giving me anti- hists first. That's the plan now anyway. I reacted on my 8th carbo so all a bit surprised, although first line was with taxol. I am feeling well and, like you Jenny, I get on well with my oncologist so that helps. My very best wishes to you. XX

  • Hi Jenny I too am on the wait till symptons get worse before starting more chemo. my onc. told me it is still effective if you leave as long as possible. it will be my 3rd line finished last line in July so not long remission, Had carbo 1st line then carbo paxi/taxol 2nd line. As I was trying to treat myself with alternatives Hemp Oil ( rick Simpson) I went 6 months without starting chemo again and it was by then pretty active. Hard to say what recurring symptons are burning sort of sensation ascites feeling sick generally very tired and no energy were mine, hope this helpsyour understanding why we have to wait.

    love and hugs Jenny xxxx

  • They are mine too Jenny .. not pleasant but at least I know what they are .. Love Tina x x

  • Interesting, I am now getting those symptoms mildly though at the moment and I am seeing a naturopath for vitamins etc, thanks for responding. Jenny B xxxxx

  • It's fantastic to get all these replies just puts your mind at ease a little, it's the first time I have ever posted, great support Jenny B

  • Hi, can I please ask if the burning sensations are on the soles of your feet? I had this when first diagnosed, and again with reoccurrence in Feb this year. Problem is that the taxol also made my feet burn and whilst this gradually went, I have had some of it back again, 6 mths after treatment but my scan was clear on the 25th Nov. Anyone else had chemo symptoms ebb and flow? Thanks

  • Hi sorry you have this side effect. Ive had it for 5years since lst treatment, and again since 2nd lot. It is painfull and is a problem more in cold weather. Called perpheral neuropathy also affects fingers. GP can give pills but ldont like them.many women have it lthink at least l am here and can manage!! Good wishes.

  • Hi, thanks for your reply, my husband has bad neuropathy now 18mths after chemo which is worse in the cold weather. Mine is more a burning sensation on the soles of my feet, hot flushes, and night sweats. As I said a symptom of my cancer but also taxol symptoms, I just have to get my head around the fact my scan was clear in Nov and accept it that this is chemo effects still. Had some refelology with acupuncture a week ago which has worked very well and calmed things down. Best wishes to you all,

  • Hi Jennny

    I am in a similar position, I have had two lots of chemo in 18 months and know it is coming back but not when. My CA125 does not tend to come down alot with chemo but i only have it taken now about every 3 months not due till march now. The last time it came back I experianced indigestion type symptoms the same as when I was first diagnosed, some slight discomfort in my abdomen came a little latter. My CA125 was only 160 when I started second line chemo following a scan which showed reoccurance. I started chemo on oncologist advice. Having had a difficult time with my last chemo I will be waiting a little longer this time as long as my oncologist does not think it is urgent to go into treatment. I have also got a second opinion after second line chemo. I like you do have confidence in my oncologist but living in wales adn attending a average sixe hospital I became aware that they did not have access to all treatments and trials available. I am now attending another hospital with acccess to trials and having had a bit more investigation done have more info on my type of cancer and consequently feel this may help my treatment in the future. I am hoping to get on a trial when it returns for hormone treatment which was not available at my original hospital. I am lucky that I am still attending incontact with oncologist and macmillon nurse.

    Hope this helps


  • Thank you for that info very interesting. No trials have ever been mentioned I have tried three hormonal drugs in the past but they had no effect on me whatsoever and gave me shocking side effects. I have been boosted by all of the replies, it doesn't seem such a lonely journey after all. Take care Jenny B

  • Hi Sharon, was just wondering what hospital you're attending now as I'm in Wales, six months in remission, but just in case I should need second opinion in the future, I'm in Velindre now. Good luck with your treatment in your new hospital.

    Love Kaz x x

  • Hi Kaz

    I am in wrexham hospital which is great, but does not have access to some things and it is Christies in Manchester that i have had my second opinion from.

    lets hope you never need this

    sharon x

  • Thanks Sharon, take care x x

  • Hi Jenny B

    It's good you're upbeat and fighting. I'm just on my second line now. Had single agent carbo-platin the first time round with no really difficult side-effects. This time I'm having a mix of carbo-platin, gemcitibane and Avastin and I had a shock reaction to the carbo-platin on the 3rd treatment. The told me it's more likely for patients who previousy had it as a single agent. It was all handled very efficiently by the hospital staff. The drugs prescription was amended for subsequent treatments and the rate of infusion has been slowed down. I've had no problems since.

    I was 2 years free of chemo after the first line of chemotherapy. I had no symptoms whatsoever except CA125 mounting gradually up to 75. The hospital did a few scans to monitor what was going on and told me I should restart chemo as the tumours were 3.8 cm. I'm happy this was the right decision and felt the time was right. Currently experiencing very strange numbness above the waist which may be due to a 'wayward' liver function so they are thinking of reducing the dose of gemitibane to just once every third week to see if that sorts it out.

    I'm impressed you've learned to play the piano. It's a very therapeutic and rewarding hobby. I think it's great to have a goal and new interets. I think I'm in a similar place to you but have become interested in politics and volunteering which I'm finding very rewarding as I can do this round my hospital commitments. I'm pretty rubbish on the piano but play for my own amusement.

    Keep on posting ...and fighting. I'm relieved to read you don't intend going anywhere!!!

    love Annie xxx

  • Thank you for that info Annie it is somewhat reassuring to get all this insight and to know we are all in there battling this together in our different ways xxx Jenny B

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