Hello everyone hope you are managing to enjoy some sunshine and avoid the showers. I thought I would post a little bit of an update.

I had a recurrence in October 2013 8 months after my CA125 had started to rise. The cancer had spread to some more of my lymph nodes, there was some activity around the bowel and I also had a small pleural effusion on my right side.

I started carboplatin and gemcitabine with Avastin. I had a scan after 4 cycles because I was feeling really bloated and full. The scan showed a partial response no new growth and some minor shrinkage. I had been feeling really down and tired on the treatment so after 4 cycles and on the recommendation of my oncologist I decided to stop the chemo but carry on with the Avastin.

I did start to feel much better after stopping the chemo and it was a huge relief. The hospital decided that they wanted to scan me every 3 months. By the time the next scan came round my CA125 had started to level off, the bowel symptoms had returned and the day of the scan I wasn't feeling too good. When I saw my consultant the next week I was feeling physically uncomfortable sitting, bloating, backache etc.

The scan results were a bit mixed with some further shrinkage in some of the marker nodules but this time there has been some new nodules on the mesentery of the bowel 'that are suspicious of an early relapse' and also on what remains of my omentum. Normally I would be on watch and wait but because I am getting bowel symptoms my consultant doesn't want to do that.

I managed to negotiate my way onto to a clinical trial specifically for low grade cancer. I have an appointment tomorrow morning to start the screening process........

28 Replies

  • So sorry to hear this Lorraine , what a disappointment for you.

    Hope you get on the trial and that the trial drug will work well for you.

    C xxxx

  • Thanks Charlie I think I have come to expect to have treatment my cancer to stabilise and for it to remain stable for a couple of years with it being low grade

  • Im on same chemo progam as u. Hope trial goes well.what was your ca125 at start an what is it now.

  • I have low grade disease so I do not respond very well to chemotherapy. At the start of treatment it was about 160 I think and has now levelled out about 100.

  • As you know, I'm really sorry you have to move into treatment so soon after your last. I wish you well and hope you have a very good response whether you get the trial drug or not. I don't really understand why I'm still waiting but I have a feeling I may see you here since I have a provisional acceptance onto the trial. T xx

  • Can you not ring up your consultants secretary and find out what is going on? Have you had to go through any screening yet for your eyes, heart etc? They usually ask for a biopsy or some of your tissue from a previous surgery/procedure

  • I've got some recent samples from last September which were analysed at my local lab and then at my cancer hospital as well afterwards. I've been referred for some more heart investigations by my GP, which I'm so glad about. Once these results are in, I'm going to bring the appointment with my oncologist forward. I don't want to not satisfy the criteria. My GP said yesterday when she saw the report on my heart, that because the T waves occur at rest and are new, she feels the problem is to do with electrical signals, probably as a result of the PPC. At least I'll have the results before going in to see if that problem will still exclude me. I don't understand about there being a third category of drug given. I thought it was the MEK (162) against physician's own choice (albeit only certain ones). Do you know anything about the third category you mention? Does your consultant have an inkling what it is? Surely, it won't be a placebo? I've never heard of that with Ovarian. T xx

  • My samples have been requested from St Marys where I had my surgery and they are being sent off to a lab. I have assumed this is the drug company's lab but the Christie are also testing me for hormone sensitivity as well in case we want to go down this route at a later date.

    There isn't a third option I assumed that they meant you will get two chances at Mek162 when they do the randomised draw but I will double check this tomorrow. I think they have chosen the chemotherapy agents that have been shown to be more effective against low grade OC.

  • Thanks for your information. I really appreciate it. I don't much like the choice as I'd like single agent carboplatin again and it's quite a long time since I had chemo so I think maybe the body has had time to forget I had it. (This is my nonsense logic!) It's good that they're doing the oestrogen receptor positive test. That way, you'll know that there is at least another drug which could well be effective. My nurse said that when the hormone reduction and blocker drugs were used, they had some women who didn't comply with the regime and it was one of the reasons they stopped using it. This help you're getting is increasing the field for you so I'm really glad about that. T xx p.s. it's taken me quite sometime to work out your heading I had this vision of an insect in your ear. Very funny! x

  • If you like I could scan in the information they gave me to read? How did you respond to carboplatin last time? There will be other mek trials that is what they keep telling me but I think the heart exclusion might be relevant to all of them.

    Earwigs freak me about a bit but I think its the name.

  • It's ok about scanning it. You don't have to. You have enough to think about already, but it was good of you to think of me. I had a partial response to single agent and that's actually a brilliant response I'm told. I think you're right about the heart exclusion from what you've told me so I'm keeping my fingers crossed. Before the first chemo, I had pins and needles down both arms and one leg, which improved after treatment, so I think it's back with this progression. It's particularly bad when I'm laying down on one side. My oncologist said it was probably pressure but I didn't understand what she meant then. I sort of do now. So from my thinking, I've come to the conclusion that this is what's causing the chest pain. My GP says she thinks it's electrical signals and with all kinds of things going on, these can go wrong. I hadn't really understood about this. Anyway, this is my theory based on my own experiences and I'm convinced it'll go away with treatment. My heart specialist said, 'It all depends if the treatment works' when I asked if I could get better after chemo. I was astonished because I would never go into treatment thinking it wouldn't. I'm an optimist and if it doesn't for any reason, I'll deal with that later. I looked at the heart doctor and thought 'Of course it'll work. What are you on about?' That's the thing about this disease. It makes us a lot more resilient than we were perhaps. This optimism I have may appear to be nativity to him, but I take hope from our friends here and know that it's reality not innocence. Such was the difference in my view of chemo and the heart doctor's, I feel I've very much become a citizen of Cancer World where normal rules don't apply. T


  • Absolutely cancer stabilisation is a really good outcome for us low graders. I usually associate pins and needles with nerve involvement is that what you mean by pressure something pinching a nerve?

  • I think she means growth onto nerve bundles. There's all sorts happening and I know my abdomen is in a poor condition because I've had so many surgeries on it. I'm doing practical things to help myself like sorting these tests out, which helps. T xx

  • Wishing you the best of luck Lorraine.

    Love Mary xx

  • Hope all goes well for you,best of luck with the treatment, thinking of you.

    love Jenny xxx

  • Hi Lorraine, good luck with the trial and hope all goes well for you

    Jan x

  • Good luck on the trial drug

    Love Sue x

  • I was very sorry to hear your news and I hope that today has gone well for you, the clinical trial sounds hopeful.

    Love a Wendy x

  • Thanks Wendy today I was just signing the consent forms. The screening for this trial is quite lengthy but hopefully I should know within the next 5 weeks possibly sooner if they decide there is not enough measurable disease.

    Do you know what the difference is between clinical and radiological progression?

  • Sorry to say I do not know what the difference is. The only thing I know about is what Radiological progression means and that was explained as being the stage at which where they can measure the size of a tumour. Since last September my team could see some changes in my abdomen but I was told it could be inflammation so they decided to err on the positive side but then by last February the CT scan started to show localised tumours, one below my appendix and another on my bowel. It was at this point I was told they could see radiological progression. Hopefully someone may know what clinical progression means. Take care, I will be thinking of you over the next five weeks.

    Love Wendy x

  • Thanks all for your good wishes its a case of waiting now to see if they will send me for an ECG and for an eye exam which will be at a different hospital

  • Hi Lorraine, think they mean a worstening of your symptoms by 'clinical progression' whereas ' radiological progression' is just that things look worse on scan but you feel no worse . Hard to judge i expect as seems normal to feel different every day with this disease ! Good luck xx

  • I was thinking that you don't have measurable progression by CT and the criteria rules out using CA125 alone. I feel it might depend if there is a willingness to accept the conjectured thinking about what's going on in your mesentery. Since you don't have any measurable disease and despite there being some evidence, you don't have symptoms, I feel you're borderline as a candidate which is why your doctors are making a case. I sometimes wish in these cases that they'd do a laparoscopy, but then they'd have to do another to measure at some point and then another and that's probably far too invasive. As I said Lorraine, I have confirmed growth in the mesentery from a laparomy and I'm on Watch and Wait. Have your doctors considered getting you provisional approval (as your plan), then giving you a break since it isn't very long since you finished your last treatment? My doctors at my local hospital looked downcast when giving me my news and said I was being referred for treatment, but my oncologist disagreed and it's now been 9 months. I feel that, if I get the chemo arm rather than the MEK, I'm likely to respond better the more active the disease is. However, I know this s balanced by a later response to the MEK (I.e. after there's been more progression and damage to the area). The psychological aspect had been very hard but not as hard as another line or lines of treatment. I just wondered if your doctors have considered Watch and Wait as an option as I think The Christie has 14 months left to run on this. Love T xxx

  • I am having symptoms which is why my consultant wanted to start treatment and not wait another couple of months. I think the guidance also refers to clinical progression which is why I was asking about the difference between the two. I also have some measurable nodules in other locations.

    Either they will let me on or they won't I have no control over that there will be other trials coming online in the future. However I think I will be having treatment of some sort possibly going down the hormonal route rather than trying more chemo.

  • I have symptoms too like increasing pain which is controlled to some extent by medication. I think the dose may have to go up soon. I also have increasing constipation and so the medication for this may have to be adjusted. I have measurable disease as the lesion on my lung which was thought to be an haemagiona, was actually the disease and reduced by more than 50% with carboplatin. The lesion in my lung has only grown a tiny amount since diagnosis, though it might have recently as I haven't had a CT for quite some time. When I was taken into hospital last September, nothing really showed up on CT but during the operation, there were nodules and some in the small bowel mesentery which had calcified. I think it's quite hard to get an accurate picture of this mesentery so far as I know. I think perhaps that your oncologist and mine have different perspectives, but then each patient is different and every disease is different within each patient. I really wish you well with whatever treatment you have ... Love to you.. T xxx

  • Thanks Sue I wish the same for you

  • Hi Lorraine - I'm really sorry to read this, hope you are not feeling uncomfortable now. You sound very up-beat. Do keep posting if you can, I am also a low-grader just off chemo round 2 last summer. Best Wishes to you - Nicola

  • Hope you get on the trial, Lorraine, and that you get a good result if you do. Love the heading BTW!

    Jill xxx

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