Ding Ding Round 7

[ScardyCat40]

Some of you my remember that since February this year I have been on the LOGS trial for recurrent low grade serous ovarian cancer. I was at the hospital on Wednesday as soon as the blood room opened as had a couple of appointments to get to.

An hour later I am still waiting to be called through I am not very good at this bit......waiting. Eventually it's my turn although I can never work out their system as the numbers never seem to go in the order they were given out.

They have trouble accessing the veins in my arms and also my port so I get sent upstairs to another unit. Whilst waiting for the lift my name gets called out to go through to clinic. I walk over to the nurse and explain re bloods and have to go to get ultrasound so arrange to let her know when I am back.

Bloods get sorted and I go to the ultrasound unit and hang around for another hour for ultrasound of chest to confirm yes have pleural effusions and the one on the right is bigger than the one on the left.

Back over to clinic to let nurse know I am back then more waiting until a room becomes free. We discuss my latest CT Scan and I ask for a copy of the report as I like to digest the contents in my own time.

It's a bit of a mixed bag but better than I was expecting. My CA125 has been rising and this is reflected in my latest scan in there are some early signs of new disease but they are quite small. Otherwise marker sites were still stable and any changes were still within the 20% tolerances of the study. My pleural effusions have been upgraded from small to moderate which was disappointing.

We talked about my lung function tests and my breathing is restricted i.e. not fully able to expand chest but its not inferring with my overall lung function. We discussed a referral to a lung specialist my consultant did not think this would be helpful and I disagreed with him stating my reasons for wanting the referral. I want to be sure that the trial drug hasn't caused any permanent damage to my lungs and its safe to carry on. We did discuss a possible lung drain, which took me by surprise as I had been told this wasn't safe as effusion was too small. This is a painful procedure so would be a last resort and I think I would want to wait a bit longer.

So for now I am still on the drug trial.

[Katmal-UK]

Mixed bag indeed but as you say it was better than you were expecting. I take it you are not being referred to a lung specialist yet?

[ScardyCat40 in reply to Katmal-UK]

I hope so my understanding was that the rest of the team agreed just this particular doctor resisting and I put my foot down

[chrissapam in reply to ScardyCat40]

is so difficult...I personally am wary of team decisions, although am aware this is not a popular view; seems to me the strongest personality tends to win(!)

However, everybody is struggling with health care being as it is in this country...the sooner we operate as Scandinavia the better.

Much love and thinking of you as you continue you determined journey...best and best of luck Chris xx

[ScardyCat40]

I have been to my GP as well as not sleeping very well keep waking up feeling like I can't breath or I am drowning. There is lots of phlegm at the back of my throats and acid burning/bile taste. After lots of going backwards and forwards they have agreed to refer me to ENT

[Zena41]

That's good your going ENT. Maybe they wil refer you in to respiratory if that's a root cause?

Xx

[ScardyCat40 in reply to Zena41]

At the moment the oncologist this the two things are separate but it's not really his area of expertise

[85live4ever]

Hi there, yes it is a mixed bag all right. It doesn'thelp being messed about you have enough going on you really don't need the extra waiting & traveling around the hospital.

I am not a doctor but can't see why you are not being referral to a lung specialist. It's very clear you have a problem with your lungs. I do recall years ago wanting to be referred to a special because of depression & the doctor said their department would have to pay so the answer was no. Because I had taken on private cancelling in the past they told me to go privately. It's all down to the cost most of the time.

You must feel confused one minute you can't have a lung effusion then the next minute you can. I get this a lot one minute I am being told no to this & no to that then my conditions hasn't changed but their minds have & it's yes, yes, yes. I get so confessed I don't know if I am coming or going!!! So I do understand where you are coming from.

Glad you are still on the trial can only be a good thing. Thinking of you take care Cindyxx

[ScardyCat40 in reply to 85live4ever]

I find the consultant I saw on Wednesday to be a little challenging. My breathing issues have been going on for a while and he kept telling that my pleural effusion was too small to be causing me problems and kept asking how far I can walk etc. Some days are worse than others so it can vary I guess as long as I can still do routine stuff the docs don't see it as a problem but I don't want to be stuck indoors all the time. One of the side effects of the drug is it can cause lung disease and scaring of the lung so I just want a specialist to review me

[85live4ever in reply to ScardyCat40]

Yes he does sound a bit chanenging maybe he had massive big era plugs in his ears. So he didn't have to listen to his patients just in case they made more sense than him.😀

I would carry on pushing to see a lung specialist. I like what Zena said about getting a refer from the ENT. It can't hurt to ask especially seeing the trial drug can cause lung disease & scarring. Good luck at the ENT clinic. Take care Cindyxx

[ScardyCat40 in reply to 85live4ever]

All these things take time

[85live4ever in reply to ScardyCat40]

Yes sadly it does take a while to get these things sorted.

I was never a pushy person but now I have become more pushy when dealing with health professionals because this is my life not theirs.

Please keep us up dated take care Cindyxx

[ScardyCat40 in reply to 85live4ever]

To be fair I have had CT scans and echocardiogram but apart from pleural effusions they haven't found anything

[Cropcrop]

Mixed bag but it could have been worse 😊. Isn't it frustrating when the left hand doesn't agree with the right hand and the different departments don't always work together and coordinate necessary services, its such a waste of time and money.

Good luck with the ENT referral there's obviously an underlying cause for the phlegm and you shouldn't be left to feel like you're drowning, could this feeling be because of the effusion? Maybe ENT will be able to answer this one for you so fingers crossed for a speedy appointment there.

Of course you need to find out if the drugs have caused an issue with your lungs especially as it's a known potential side effect and I don't understand it when some doctors seem to be reluctant to acknowledge possible side effects especially when we've all had them in one guise or another.

I don't blame you for not wanting a drain but if it is shown to be the root cause of the breathing issues then it could be the way forward but again you've had mixed messages so I understand your frustration.

I hope your breathing gets easier very soon, it's scary not being able to breathe properly, and that you get all the answers that you want and need sooner rather than later. Take lots of care and try to be as well as you can be ❤️Xx Jane

[ScardyCat40]

I will have a drain when I feel it's warranted by body isn't telling me that it is yet.

I wondered if the phlegm might be connected to the pleural effusion but when I mentioned it to the oncologist a few months ago he listened to my chest and felt the likely explanation was secretions at the back of my throat most likely caused by post nasal drip. I also get crackling and popping at the back of my throat and sometimes high pitched whistling.

I have been to the GP 3/4 times we have tried nasal sprays, anti histamine, inhalers etc. We have moved my medications so I take my omephrazole at bed time. I also sleep on a wedge as lying flat is really uncomfortable. Things like cigarettes smoke make it worse. It has been driving me mad

[CallmeMum]

Hi lovely,

Sounds like a bag of 'pick n mix' bit of this bit of that! Hopefully you'll have some more certain answers soon xxx

[Dee345]

Just a thought but sometimes night time choking sensations are caused by reflux. Have you tried Gaviscon Advance at night? It works by forming a type of seal over stomach contents and helps prevent the liquid rising. May want to run it by your doc first. Good luck. D

[ScardyCat40]

I take omeprazole at bed time. I can't gaviscon then because of the antihistamine I have been prescribed