Good Morning from Rainy Manchester

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

32 Replies

  • 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

  • Thank you

  • am so sorry and having had to stop my parp inhibitor, also know pretty much how you 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 sure you will with help find a way forward. Lots of hugs and thoughts, Chris xXx

  • As long as I can keep running

  • Sending you a big hug . Hope you get to continue on the trial or you get a plan in place soon . Hang on in there . Love and best wishes Kim x💜

  • Thanks Kim I am feeling a bit scared about doing some permanent damage to my heart or lungs but I shall wait upon the results of my up coming scans

  • or walking as far as I'm concerned...thank God for my car....! xxxx

  • In reality my run is a brisk walk 😉

  • am jealous!!! xx

  • 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'm sure you do and thank you for responding....I recently wonder why I ever minded taking the dogs out(!)

    I do hope your heart and respiratory problems get gut feeling is they will but it must be so anxiety provoking especially when

    you feel you volunteered for the trial...but am sure we all would have done it...we do the best we can don't we?

    Fingers crossed for Chris xx

  • 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

  • sounds relatively hopeful to me!! x

  • 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.

  • Hi have just read more of your posts etc. My son is a runner, it must be really hard for you not to be able to work out as you used

    Was interested in what you said about Plymouth... I lived for many years near Dartmouth and frequented Plymouth a lot.

    Hope your Ca 125 C x

  • Thank you that means a lot

  • 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.

  • Thinking of you and sending very good thoughts xx

  • Hi Lorraine - please keep us all updated. Thinking of you - Nicola

  • 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.

    Thinking of you


  • May there not be other drugs that would not have such a bad effect on your heart? Lynne

  • Well there are still the conventional treatments but the problem with low grade is that it does not respond well to chemo

  • Wishing you all the very best, and hope the cardiologist can advise on the best way forward from a heart point of view. Dawn xx

  • I think I will only be referred to a cardiologist if my EF does not improve

  • Hopefully the change to EF is reversible once you stop taking the trial drugs?

  • It's supposed to be

  • I really hope so - will keep everything crossed for you. Best wishes Dawn

  • My EF is still within the normal range and it's not got worse. It's just on the low side of normal and it's dropped whilst I have been on the trial

  • 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

You may also like...