As many of you know I have been on a trial for recurrent low grade serous ovarian cancer. Two weeks ago my medication was stopped because a recent echocardiogram show some changes to my ejection fraction. The ejection fraction is a measure of how efficiently your heart is working. Normal range is 50-70% (although some disagree and say its 55-75%) at the start of treatment mine was around 60% I think but now it has dropped to 50%.
Those that follow my posts will know that I have been suffering with shortness of breath and sometimes waking up in the night gasping for air with no obvious cause or anything suspicious on my scans.
I had a repeat echo on Monday and it has showed no change to my EF so at least its not got worse but this means I still can't restart treatment. I have another echo in 2 weeks but if it still doesn't improve them I may be off the trial permanently. I may also be referred to a cardiologist.
I have also asked to be referred to a respiratory specialist after a couple of lung function tests showed some confusing results. I received a copy of the referral letter but when I chased it up the hospital had not received the letter. I did mention this yesterday whilst in clinic.
My CA125 is also rising and I have a routine CT scan on Monday
Written by
ScardyCat40
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I'm sorry to hear you've had problems on the trial. It is so disappointing when things don't work out the way we hope, but at least you are being monitored closely and the heart issues have been flagged up in plenty of time. Sending you a big hug and positive vibes that you can continue on the trial further down the road.
I am feeling that for me that this trial is drawing to an end and that I might have maxed out the benefits of this treatment. Even if my heart resolves itself my CA125 has been increasing and there have been some subtle changes on my last CT scan. The study has a tolerence of 20% so it may take a few more months for that to happen.
Hi, I Think I read most messages on the forum and there are many posts I what to reply to but feel,inadequate as to what to say 're words of comfort or reassurance and giving information, Afraid I cannot help 're information but just wanted to say if the trial is worth continuing I hope you get a chance to do that. I am so sorry to hear about the cardiac problems along with coping with this bloody awful disease and I am sending you my heartfelt good wishes. Chris
am so sorry and having had to stop my parp inhibitor, also know pretty much how you feel...my onc. said 'you really have given it your best shot' .... am not sure what that means(!)
Take a bit of time to recover and get the best from your new referrals. Congratulate yourself for all you've done so far, gird your loins.. or pull your knickers up!... for the future and keep going onwards and upwards. We all admire you ...am sure you will with help find a way forward. Lots of hugs and thoughts, Chris xXx
I practice about 3 times a week. I was concerned that if I stopped exercising then things might get even worse. I always think about those that would still like to be in my position
I knew that this was a risk when I signed up for the trial. They go through all the potential reported side effects with you. I have also had lots of tests and they send you for regular echos and my EF is still within the normal range but it's at the bottom and it was nearer the top end
Yes I am hopeful that it will eventually improve also if it is responsible for my breathlessness then I will have an explanation. I don't know about you but I hate not knowing what is going on in my body when you know something is wrong.
However my CA125 is climbing so I think eventually This trial will draw to a close for me so I am going to enjoy my time off treatment and think about whether I want to carry on with the trial.
Hoping your referral to the respiratory specialist happens sooner rather than later. This must be quite concerning. It might be worth asking if the lowered EF means only that you will need to leave the trial, but is insufficiently low to cause you any problems. They are however still hoping that it will right itself so that must be a possibility.
Good luck with the CT scan on Monday. For info, although we had a reasonably sunny day here in East Sussex, we too now have rain...
50% is still within the normal range. I don't think they would be able to definitively answer that question because my team are oncologists not cardiologists. That is why they might refer me to a cardiologist if it doesn't improve.
I like you have low grade serous carcinoma and am awaiting a big op in November. I am running as much as I can at the mo as my anaesthetist said the fitter I am the better for the op. I also walk miles with my dogs so I can imagine how it must feel to think you might not be able to. All the best with the scan and I hope they are able to get to the bottom of your breathing issues.
Just want to send hugs and support, all the other stuff that comes with this rotten disease makes everything harder to deal with and keeps throwing spanners in the works. I do hope you can get some more positive and clear information soon. Thinking of you x
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