First week on Caelyx/Carbo- lungs hurting

[Lindaura]

This might be silly. I am only on the 7th day post infusion of my first round of Carbo/Caelyx.

I went in on Monday feeling healthy as a horse, just suffering my first recurrence with a CA-125 of 473.

All has gone smoothly, bar my first day, when I did not have the nausea under control, but been feeling surprisingly well until yesterday, when I was too fatigued to do my usual computer work and my lungs were beginning to hurt.

Fearing blood clots, I tried to walk around a bit, walking up the stairs and undertaking small chores, but I would soon tire and have to sit down, feeling breathless.

Today, I am slightly worse. I went upstairs to make Cheerios, but I had to rest between getting the box off the shelf, then pouring it, then bringing it downstairs.

My first time round, I was very sick when I started Chemo and had a pleural effusion that crushed my lugs, along with several pleural embolisms.

I was also very anaemic, but I was so sick from the cancer, I couldn’t tell what was causing what.

Now, I started off “healthy”, but only 7 days in, I feel almost as bad (except no ascites or pleural effusion.)

Could either one of my cocktails be responsible for my lung pain and breathlessness this early into treatment?

Sorry to go on so long.

Thanks for any advice,

Hugs💕

Laura

[Lou53]

Sorry to hear what you are going through Laura. Is there a hospital helpline you can ring to talk this through? I really don't have any advice about your specific side effects but I recently pushed for a review of my cisplatin and gemcitabine which has been helpful in getting me over some of the worst side effects. I was holding back thinking I just had to go through it and only really pushed for a review when I had to skip a chemo because I felt so ill. So my only advice would be to talk to the hospital team asap as you sound like you are in a lot of discomfort and they may be able to help you now.

Thinking of you and hoping things get better for you soon.

Louise x

[Lindaura in reply to Lou53]

Thank you, Louise,

I will call my CNS tomorrow. I just hate to complain, when last time I was s obviously Ill. I did have to go into hospital the second week last time, due to all the issues, but later after being stabilised, I just needed the next round of Chemo to take care of many of those symptoms.

Hugs,❤️

Laura

[Lou53 in reply to Lindaura]

I know what you mean about hating to complain, but please don't as the team is there to help. I am sure that they would rather hear from you than find out later that you were suffering and they might have been able to help.

Take care,

Louise x

[Nancy222 in reply to Lindaura]

It's not complaining. My oncologist says "How can we treat the symptoms if we don't know what they are?"

Just tell them.

[Coldethyl]

If I were you I’d pop along to a and e - ring your oncology helpline as they can often get you fast tracked - it may be nothing but given you’ve had clots before I think you need checking - I assume you are on blood thinners? When I was between u/s and ct scan I was exhausted and breathless but I put that down to anxiety - turns out I had lungs full of embolisms so get seen today x

[Lindaura in reply to Coldethyl]

Oh gosh,

It just seems too soon to have embolisms! I am not in blood thinners yet, even though I have loads of injections left from last time. I will call tomorrow morning if I stilll feel this way and see if I need to go in.

Thanks, Ethyl,

❤️

[Coldethyl in reply to Lindaura]

If you had clots last time I’m surprised you are not on thinners again already - if you feel worse tonight don’t wait till morning and at least ring up x

[delia2]

I think you should get checked. Since you’re new to this chemo you can’t be sure but that degree of breathlessness could be clots and don’t take a chance! Better safe than sorry. Xoxo

[Lindaura in reply to delia2]

I feel pretty stable and that I can wait til tomorrow.

Thanks,

Laura

[Seasun36-uk]

Agree with Delia & Coldethyl.

At my hospital we have a 24/7 Chemo Helpline - I would ring tonight Laura.

You said yourself that you feel almost as bad as last time..

Linda xx

[Lindaura in reply to Seasun36-uk]

Now, I guess I am getting worried.

Perhaps I will call...

Thanks,

Laura🙀

[Yoshbosh]

Hoping by now you have phoned your hospital helpline for advice, Laura! I agree with the other recommendations to get seen asap - don’t wait to call your CNS tomorrow. No one will think you are moaning or wasting their time. As my very first gynae-onc said to me, “There are people who should have gone to a pharmacy for some advice, then there are cancer patients. Never feel you are wasting our time.”

Good luck,

Vicki x

[Lindaura in reply to Yoshbosh]

Golly,

I am thinking about calling now...

Hate to do this on a Sunday night,

Hugs,

Laura

[Hidden]

I was told that day 7 is when the caelyx kicks in. Like a double whammy. It was at this point that I started a week of injection for wbc. Days7/10 are the worst then start to feel a little more normal. I know we are all different so just giving my experience.

Hope that you start to feel a bit better soon.

[Lindaura]

Thanks so much for that.

Yes, Day 7. Good to know.

I will have bloods taken tomorrow by the District nurse maybe...

Best,

Laura

[Hertsmum]

Hi Laura - can only echo what the ladies have said, don’t leave it yo chance get a scan to check out lungs in case you do need the blood thinners. When I came in here (hospital) I was putting breathlessness down to ascites or general unwellness and turned out I had quite a few PE’s. You’re not complaining just being completely sensible to do so.

Hope it turns out to be ok. They can then advise you if it is to do with the caelyx.

Hang in there! Hugs, Madeline xxxx

[Lindaura in reply to Hertsmum]

Thanks, Madeleine,

I finally took everyone’s advice and called the Chemo line. They had me come in to A&E and I was seen right away.

They gave me IV antibiotics just in case it was an infection and X-rayed me, but could see no infection.

I am feeling much better now, but they are keeping me overnight for a CT scan tomorrow, as like you, I was full of PEs last time round.

Kind of feel foolish though, because I don’t feel so bad now!

Hugs,

Laura

[Hertsmum in reply to Lindaura]

That’s good no infection and hopefully scan will show no clots but definitely best to be safe than sorry! Xxx

[Nancy222 in reply to Lindaura]

Nothing to feel foolish about. XXOO

[Alifit]

Hi Laura - I’m sorry to hear that you’re experiencing these problems. I did have minor breathlessness after a few days of Carbo/caelyx - I phoned my team and they said just to rest. In view of your history I would check with them to be sure. I have well controlled asthma and generally put it down to that and lack of activity. I think coming off the steroids can give you minor side effects too - I’ve had mine tapered over 5 days to try to reduce the general feeling of irritation with life that I was getting!

I hope you resolve your worries soon - ask for advice, that’s what the folk are there for.

Love Ali x

[Lindaura]

Thanks Ali,

I feel foolish, but I came into A&E anyway just in case and the staff here has been amazing.

CT scan tomorrow, then home.

Hugs,

Laura

[lorraine71-Australia]

Hi Lindaura, I've had a lot of Caelyx and carbo Ceaelyx in the last 4 year and always had good results, with some bad side effect but you will be able to manage with the help of your team always ask their advice and of course the lovely ladies on here who have been through it all.

When I had Caelyx as a single chemo I had more side effects then when I had Carbo/Caelyx, Blisters, dry skin even had a couple of toe nails fall off, it was worth the good results so I hope you manage the whole treatment ,even if the have to reduce the dose it still can give you the results you want.I had The chest pain it stoped arfter a while but do talk to your team, now chine up and take care Lorraine xx

[Lindaura in reply to lorraine71-Australia]

Thanks, Lorraine,

That’s all good to know. I am sure it will get better. Just surprised me in day 7, but one never knows exactly what to expect with each cocktail.

Hugs,

Laura

[Lou53]

Hi Laura,

I've been wondering how you are now? Good to know that you did get assistance at A&E yesterday and that you are starting to feel better. I hope things pick up even more for you today.

Louise

[Lindaura in reply to Lou53]

Hi Louise,

I spent the night here and had 2 lots of antibiotics and honestly feel so much better. I am now waiting for a CT scan and then I can go home.

I still feel a bit foolish, because I feel so much improved, but I realised it is better to be safe than sorry.

Hugs,

Laura

[Lou53]

Thanks for the update. Good to know you are feeling better. Please don't feel foolish - the medical advice was to get help and that's what you did. Nothing foolish about that. Hope the CT scan is okay.

Take care,

Loui

[Mptelesca]

So sorry you are feeling this way. I had 1st recurrence in January. During the course of 6 chemos, I was running out of breath just walking a few steps. Definitely was caused by my low blood count, but, I went to a Cardiologist just to check my heart out. EKG was fine. She put me on Blood pressure meds and a diuretic. I felt better after that, but, was still winded. It went away after my last chemo. Now I am on a Parp and I am winded again. My platelets had taken a dive. Adjusted my med and so far I'm ok.

I would call the dr. and just share that with them. They may cut back on the chemo.

Eat and drink what you crave. Dark leafy veggies, berries and whatever your heart desires. Good luck with this...please keep us posted.

Marisa XOX

[Lindaura in reply to Mptelesca]

Thanks, Marisa,

Turned out to be a 7th day kick-in from the Caelyx.

I got all checked out and by morning I was normal again.

This regime is so new to me, I just haven’t known what to expect.

All my bloods were good, by the way, but I will have them checked next week, just to keep on top of it.

Just for you, though, I heard that the PARP inhibitors can really depress your bone marrow and that the dose should be adjusted downward. They seem to still work at a lower dosage and the drug companies haven’t quite got the dosage figured out. Hence all the trials.

I think you are lucky to have it and I hope to go on one when this course is complete.

Meanwhile, thank you for your kind message. I am so much better today, it kind of stuns me!

Hugs,

Laura

[Hidden in reply to Lindaura]

So pleased that it is just the effects of chemo and nothing more sinister. Just wish they would give a bit more info, so we don’t worry toooo much

[Mptelesca]

Laura, I am so happy you are feeling better! That may just come and go until your body adjusts. Good that you are on top of your bloods. I go once a week to check platelets. Mine had dropped after being on Zejula for 3 weeks so I went off. Now that platelets have come back I am down from 200mg to 100mg. Feeling much better on it.

Continued success! Please stay in touch.

Marisa

[Lindaura in reply to Mptelesca]

Thanks, Marisa,

How are you doing otherwise on Zejula/Niraparib?

Are there any other side effects you find disturbing?

It will be fantastic if you can stay progression free on just 100mgs.

Keep us up to date on this.

We are all waiting to get on the PARP train.

Hugs,

Laura

[Mptelesca]

Hi, Laura...i Just got off the phone with my "Parp" nurse. lol. My platelets had gone down to 53 so I went off for 2 weeks. Today they were 244 which is awesome. I went back on the zejula Thursday evening. I feel no different on the 100mg. When on the 200mg I got extremely constipated and just in a zombie state. I think it was more in my mind. Who knows. I feel much better on the 100mg.

Being on the Parp makes me feel like I have a little insurance. I feel like I am doing something to stay ahead of this OC. The wait and watch was enough to put me in a straight jacket. I'm also happy to be getting these weekly blood tests. So far, it's been a pretty positive experience.

Are you in the US?

[Lindaura in reply to Mptelesca]

I am actually an American living for the past 24 years in the UK.

Just turned out that way.

I believe I have been having excellent care on the NHS, with nurse practitioners visiting me once a week to check my PICC line.

And then last night’s overnight stay and CT scan in hospital to make certain nothing new and sinister was happening to my lungs.

I have never had Caelyx before, so I am learning as I go along.

I am feeling astonishingly well after the 7th day glitch and hopeful that I will actually resume normal life under this new regimen.

Thanks for your helpful info.

Be well!

Hugs,

Laura

[Helenafrost53]

Laura, I only had one of your meds, the Carboplatin and found the fatigue and exhaustion came on relatively quickly after infusion day. I'd probably say around day 2-3. It's horrible having to take a rest between simple tasks that you wouldn't normally think about. I'd say just follow your body and rest. I found that limb pains and chest pains came on around the time I'd stopped the anti sick and steroid pills again around 2-3 days later. Take it easy on yourself and don't worry about other things like housework.

[Lindaura in reply to Helenafrost53]

Thanks for that Helen,

I have noticed all you say , but honestly, I do not feel that bad now.

I think the Caelyx has a big kick on day 7 and somehow dissipates as the month goes on.

I am being careful now. Doing small tasks throughout the day and resting in between..

Not running any marathons.

Best wishes to you,

Laura