Earwigo

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

oldest • newest

Hidden

4 years ago

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

in reply to ScardyCat40

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

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

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 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

Read more about...

You may also like...

Company

Communities

Support

Languages