Roller coaster

[ScardyCat40]

Since my time on the LOGS trial ended back in April I have been on a bit of a roller coaster.

My pleural effusions went nuts after stopping treatment and I wound up with a permanent drain in the right side of my chest. I have struggled to keep on top of the drains they have become very uncomfortable and make me feel sick.

Then the left pleural effusion started to become a problem. The lung team felt I needed to be back on chemo so wrote to my oncologist. CT scan showed stable disease but in addition to pleural effusions I had the start of ascities.

It was decided to do a pleurectomy on the left side of my chest and a pleurodesis under a general. This completely took it out of me and recovery took longer than expected.

I was released from hospital and a week later I was admitted to The Christie for an emergency ascitic drain and whilst I was in started having trouble with my breathing so ended up going home with home oxygen. Had a review in clinic two weeks later and my oncologist did a 360 on chemo and offered me caelyx even though scans still stable they were worried about the ongoing fluid loss and the impact it is having on my body.

I can in for my pre chemo checks and I mustn’t have looked well as they rushed me into clinic after my bloods. Obs taken and bp was low, SATs low, slight temp and high heart rate so got admitted. Had another tummy drain as tummy was very swollen and it’s another Chyle leak. CT scan could not identify the cause of the leak but showed stable disease. However I am not feeling very stable.

Doctors were very concerned that I was not fit for chemo as I am not currently very mobile due to oxygen and swollen legs so they talked about stopping treatment and I got very upset because I at least want to try and all my bloods were ok.

I arranged a meeting with the doctors and my family as things seemed to be changing and I wanted them to be kept informed just in case. That went ok and I am pleased to report that I had my first treatment last night. Now I need to get home it’s just a case of making sure I have enough support in place as I live alone.

[Lindaura]

Hi again,

Since posting about Caelyx, I have only heard good things about it. Seems it is effective and the side effects are manageable.

I hope it will be effective for you and rid you if that hidden cancer that is cause those awful effusions!

Get well soon.

Keep your family close and I thank you for posting.

Kind regards,

Laura

[ScardyCat40 in reply to Lindaura]

Thanks Laura it’s bit of a gamble as chemo not always very effective with low grade serous which is the type I have

[Lyndy]

Sending you a big hug 🤗 xx

[BeeWild]

Hope you soon start to feel better now you have started treatment xx

Sending gentle hugs xx

[January-2016-UK]

Hope the Caelyx starts to work quickly and that you can get home soon. Are there any clear cell trials coming up soon? Might be worth checking as if the Caelyx helps sort out your symptoms you may be a suitable candidate.

All the best!

[ScardyCat40 in reply to January-2016-UK]

I don’t have clear cell it’s low grade serous and none currently available. I wouldn’t be eligible for any more Mek inhibitor trials as that is what I’ve been on

[January-2016-UK in reply to ScardyCat40]

Sorry I got the type wrong. Fingers crossed for the Caelyx and hoping they can find the source of the chyle leak.

[Maus123]

Roller coaster sounds about right... wow Kat. Glad you can have chemo after all though. I hope Caelyx works on your tumours or / and keeps the liquid build-up in check so you feel better again. That would allow me some hope as well, to be honest.

Wishing you success, few side effects and overall stable health, so chemo can continue and you can manage it. xx. Maus

[Lily-Anne]

Thinking of you as always xx

I really hope the Taxol gives some relief, I know why they took you off the trial but despite the few problems that did start to creep in do you think it would have been better to stay on it a little longer or am I misreading it?

I’ve got g1 serous along with my g3 Clear cell and chemo just doesn’t cut it on either of those

You’ve been a great support to me since I first arrived on HU I really hope I can return the favour if I can help in any way just ask

LA xx

[ScardyCat40 in reply to Lily-Anne]

I am on caelyx not Taxol and I couldn’t stay on the trial it just wasn’t safe. I just wish they had tried me on tamoxifen or something like that. There is anecdotal evidence that caelyx works better with low grade serous but we won’t know for a while

[Janet235]

Oh dear, your complications seem worse than mine! At least my pleural effusion is on the right lung only ( hope it doesn't go to left) that must be so hard. I had IPC fitted here in Wythenshawe about 2 months ago and we have drained about 10 litres overall in 500 ml lots now every third day now. Like you it leaves me wiped, and with back ache and some nausea, takes half a day to recover ...

As my disease returned I got ascites again which was drained a week last Monday but it is back again. ....

I am stopping treatment til I feel much stronger this time, if ever. as I feel I've had enough and want to start thinking about next stages of quality of life.

My kids are coming up next week for a few days ( daughter from Vancouver) and I want to start the big conversations

I am glad you and the family had a good session with the doctor. Which one on the team...? You can message me as prob best not to name on a post

Yes you need support, I am sure it is still so hard managing on your own...

Sorry wrote more about me but we can balance shared experiences that way

I wish you helpful paths and answers... virtual hugs along these difficult ways and choices ..janet 💞

[Orsolini]

Dear Lorraine - I think you are being a hero. Caelyx did give me some stability so I think you are doing the right thing, and you keep your hair. I hope you will gain strength and regain some quality of life which I imagine you don't feel you have at the moment. This disease is hateful. Always looking out for your news - Nicola

[ScardyCat40 in reply to Orsolini]

I can’t get very far without oxygen and my legs are all swollen

[Orsolini in reply to ScardyCat40]

Lorraine, you must be petrified everyday, or perhaps resigned. Can they give you sth for the swollen legs and do you know what is causing it? Be strong, we are all thinking of you - Nicola

[ScardyCat40 in reply to Orsolini]

It caused by loss of proteins and not much they can do. Just hope the chemo stops all this fluid build up. My world has because quite small very quickly and I am struggling with that

[Orsolini in reply to ScardyCat40]

I share your struggles on a small world, I will post soon but so many medical appointments, hard to keep up. lots of love Nicola

[thomas62]

Thinking of you and good luck with the Caelyx. Gwen xx

[Hidden]

Hello - sending bucket loads of positive energy. A day at a time, just manage what you want to achieve.

As you know I didn’t qualify for the Logs Trial at the Marsden, bleeding from diverticulitis (have ileostomy- no back output but it’s infected which they can’t clear up). I was put on the alternative Tamoxifen - so have plodded along. Tumour still considered stable but growing. Intestine sitting on tumour so being squashed. Hence continual in and out With blockages. Diet now very liquid, weight loss not good. Still holding on as I say, very tired all the time but taking each day as it comes. Keep counting the blessings one by one.

Take care, it’s amazing how much willpower the body has.

Sue 😘

[Neona]

Good news you have had the first treatment- now fingers crossed for good results and mild side effects.

[dryden1]

I am so, so sorry what you have been, having to go through. I am in need of a magic wand again but alas I cannot find it. I just so hope that you are breathing easier, that you have all the support in place for you to go home and that the chemo diesbits work to really positive effective? I am sending my sincere best wishes to you. CHRIS

[kat98116]

It's all been said....just adding my hugs and good thoughts from Seattle USA.

[koffeekat99]

Hi

I was thinking about you recently as I thought you hadnt posted for a while. So thank you for the update.

Gosh you must be getting fed up of hospitals.

I really hope you get back to your own home soon and the team can get your support in place quickly.

X

[ScardyCat40 in reply to koffeekat99]

Just to add insult to injury the police broke into my flat tonight because my neighbours hadn’t seen me for two weeks and have bust my front door 🙄

[koffeekat99 in reply to ScardyCat40]

Oh my word. Though I suppose at least your neighbours noticed you weren’t around.

Does that mean you are back home (and in when they burst in?!?!) or someone has told you what has happened?

[ScardyCat40 in reply to koffeekat99]

No I am still in hospital they wouldn’t have broke in if I was home. They somehow found my Dad’s number in my flat and rang him. However they have completely jammed my front door lock and still they couldn’t get in so then they broke the window next to the front door

[koffeekat99 in reply to ScardyCat40]

Oh (insert chosen swearword here).

[January-2016-UK in reply to ScardyCat40]

Hope the police are sorting out a repair for you. Good that your neighbours spotted you weren't there. Maybe keep them updated, could be useful.

[ScardyCat40 in reply to January-2016-UK]

It wasn’t a planned admission

[Lily-Anne in reply to ScardyCat40]

Oh for heavens sake that’s all you need. The police do have a duty to secure the property if they force entry. Has anyone rang the HA out of hours?

[ScardyCat40 in reply to Lily-Anne]

They did secure the windows they smashed in but couldn’t get the front door to open. My Dad was up there yesterday afternoon with the joiners from the HA. They have been able to get the door to unlock but I will need a new door, frame and replacement windows