My Ovacome
10,551 members12,857 posts

A little bit of a treatment break

I have been on the LOGS trial for recurrent low grade serous since Feb 2017. My initial response has been very encouraging first off my back pain disappeared, CA125 went down and there was some shrinkage.

More recently my CA125 has started to increase and last CT showed a new small site. I have had breathing difficulties whilst I have been on the trial. I have two small bilateral effusions, my heart function has been good and there has been no sign of inflammation in the lungs. My lung function showed some stiffness but this was not interfering with my overall lung function.

Day to day I manage ok I get a little out of breath cooking and cleaning but I just stop and start. I get out of breath going up hills, stairs and if I walk fast. Many of you know that I like to run but I have seen my 5k times go from 40 mins to 60 mins. However I am grateful that I can still participate in my local parkrun I do this by jogging for 5 seconds then walking 30 seconds. I do get very breathless but I find I can keep going at this rate.

On the trial I am required to have an echocardiogram every 8 weeks to make sure my heart is ok. My most recent echo showed some slight changes to the output of my heart. When I had the echo it felt more uncomfortable and I was very short of breath. A recent chest x-ray showed that my pleural effusions are still stable so my oncologist doesn't think they are responsible for my breathlessness but they have agreed to refer me to a respiratory specialist. I think this is mostly because I keep moaning about my breathing. I just find it so frustrating that there has been no obvious cause for it that I am starting to think it's all in my head.

For now I am off the trial I have a repeat echo on the 18/09 then I am back in clinic on 20/09. If my heart has returned to normal then I will be restarted on the trial at a lower dose and if not I think it's another echo another 2 week wait. If it has not settled by that stage then I will be off the trial for good

I am ok a bit tired and a bit down. My CA125 has gone up again so my gut reaction is that I have possibly maxed out the benefits of this treatment. If that is the case I might ask if it would be possible to give tamoxifen a go. However I need to wait for the fat lady to sing first.

14 Replies
oldestnewest

Hi lorraine hope your not feeling too down. Have you been on hormone treatment before. Sx

Reply

Yes letrozole

Reply

Did you have any luck with it. I was wondering whether to ask about trying a different hormone treatment.

Reply

No not really my CA125 continued to climb and my sites got bigger

Reply

Lorraine I'm on Tamoxifen but I also take metformin via the care oncology clinic and my ca125 has been slowly falling since completing chemo and starting this. I originally started on letrozole but couldn't continue as it gave me arthritis but when I told coc that I was changing to Tamoxifen they said in their experience Tamoxifen works better with metformin, they don't know why, however it's a good partnership.

Maybe something to investigate if the Tamoxifen option comes up for you.

They did say they had a BC patient that had came to the end of nhs options but was on Tamoxifen and she could only tolerate metformin from their protocol but the two drugs have kept her stable, that was 8 years ago and she's still their patient.

I haven't really been on here for a while but as a fellow low grader I do like to follow your posts

Take care

Mx

2 likes
Reply

Hi I read your post and was sad for you. No wonder you feel down. I love however despite everything and the breathing difficulties you have continued to run even if you have had to adapt. It's shows great spirit and resilience. And has prevented you from decompensation from lack of exercise. I hope you can hold that in the coming weeks. It could come right to stay on the trial. I was breathless (for different reasons during primary treatment) and the cardiovascular specialist was very clear that I should keep exercising through it to maintain some level of fitness and to slow the cancer.

And Michelle as always has given great information in her response about tamoxifen.

Hang in there. J x

1 like
Reply

How frustrating for you. Not surprised you feel a bit down. Mysteries are the worst. X

Reply

Hi Lorraine - I am sure you are frustrated but it does sound like a clear-Ish plan. I'm learning that waiting is part of the game, there is always a next appointment waiting, and the skill is in living life ´normally' around it. Your running is brilliant - Nicola'

Reply

Thanks Orsolini I am not unhappy with the plan or even the waiting

Reply

Did your backache return with your rising CA level?

So jealous of your running. I'm shattered when I get up two flights of stairs to use the treadmill lol

LA xx

Reply

I get shattered as well..........I live in a second floor flat but I think the exercise helps. I am not really running its more of a brisk walk

Reply

Hi ScardyCat

I have been on LOGS (Trametinib) for recurrent low grade serous since Aug 16. I have CT & Echo scans every 8-10 wks to start with I had dreadful side effects but there was definitely shrinkage, however I've now been on lowest dose since January & although nothing shrinking nothing getting bigger either & my system seems able to tolerate the drug, so glad now I didn't ask to come of it, because I was sorely tempted at the beginning. I don't know how long this will keep working, but every year is a bonus. I get short of breath at times too, & occasionally go upstairs for a wee lie down in the afternoon, all my side effects are skin related plus dryness (skin mouth eyes) but other than that I seem to be ok

Reply

Here's hoping the respiratory expert can get to the bottom of the breathlessness and at the same time the echo shows matters have returned to normal.

1 like
Reply

I have not done much today. I have been feeling tired and my chest is a bit achy but temp is normal

Reply

You may also like...