Caelyx side effects and duration of treatment plus follow up with target therapy or immunotherapy.

[Pumpkininja]

Dearest,Thank you for this great forum.

Sorry to bug you again with questions about Caelyx...is that I've been reading all your post and some information does not match with my doctor told me ( tomorrow I'm going for a third opinion)

>First my doctor told me the side effects from Caelyx are minimum and very well tolerated, that I will be able to work and maintain an active life.

Would just have to be careful to not use tight clothes and will have some creams prescribed if needed.And not loosing my hair at all, no need of cold cap( all his patients tolerated very well, etc).

>Second and this is actually the worst part:

My doctor did not provide me a duration of the treatment Caelyx: would be as long as it works.

Thought there will be a plan of treatments like for chemo carbo / taxol last year for my first reocurrence in the lymph nodes of collarbone, in February 22.I was cleared told you have 6 months chemo treatment and then target therapy Olaparib/ avastin as maintenance.

If i go for the Caelyx , imagine 6/ 8 months treatment and being optimistic

the chemo caelyx will work for me(and probably will because of my bcra1 mutation). I would like to go again to olaparib / avastin because clearly slows down the progression of disease.

We are almost in the end of 2023 so the target therapy clearly worked in slowing down the progression and maintaining me asymptomatic.Im still asymptomatic, ca125 raised and flotoates up/ down that is not a good sign in my case ( my ca 125 is very good indicator), and my mri showed new lesions very small and difused in peritoneal area and colon( main lower pelvis).other lesions were gone.

From what I've been reading, is very common unfortunately to have several lines of chemo in cases similar to mine.Then try to keep the interval between chemos as long as possible with target therapy. So the body ( and mind) can recover.

Im very worried to be honest.

If you could share your experiences/ thoughts will be forever grateful🙏🏼

Ps sorry the long post.

[Irisisme]

Hi Pumpkininja,

I had Caelyx with Cisplatin and I know it was the Caelyx that caused mouth ulcers for me, I am retired but I had a worsening of the fatigue such that working would have been difficult.

We all respond differently and I’m BCRA -ve but I was on it every 4 weeks for 6 months. It looked like it was stabilising things at the half way point but ultimately I had progressive disease at the end. I was 4th line and already had liver metastases so your result might be very different to mine.

I’m 7 years from being diagnosed iiic and having evidence of disease still after debulking, so I’ve not done too badly.

I would advise you to do what you’ve already started to do - DO YOUR OWN RESEARCH. But don’t rely on any prognosis you find online, it’s out of date and no one can tell you how you might manage things. Check your sources too.

Your oncologist has said that the side effects for Caelyx are minimum but even s/he can’t tell how you will react. I’d not call them minimum because they weren’t for me, but it was ‘doable’ , which is not the same thing. Whether you can work with them is up to you alone, but please don’t push yourself too much, you will need rest (especially the day after infusion). You also need to check the duration, it may vary but I had it once a month for 6 months and needed that full month to prepare for the next dose.

Good Luck 🤞

Iris🤗

[Pumpkininja in reply to Irisisme]

Thank you so much Irisisme 🙏🏼Hope all goes well with you too.

Just arrived from a second opinion in another hospital: my first doctor here in Antwerp.

He told that caelyx alone ( without carbo or other chemos) is very well tolerated.

a person can have allergic reaction during infusion and if affects skin / mouth then they will have to give me something ( seems is not so easy to heal) and after it gets well ,doctors adjust the dose. According to this doctor, the main thing is not to use clothes to tight that can rub on the skin for long period of time...

About the follow up, it seems standard here in Belgium to give it as long as it works and if doesn't work or is not tolerated then they need to give something else.

My doctor also advised to not wait too long to go for caelyx because now I'm still asymptomatic, so it will be easier to adapt to caelyx and my lesions are very small( unfortunately peritoneal area is not a good place).

So I'm thinking to wait until January maximum.

Again thank you so much and wish you the best in this journey. Hope one day there will be a cure🙏🏼

[Lyndy]

Hi Pumpkininja

I am not sure what your question is?

I had cycle 3 of Caelyx/carbo today. It’s generally ok. But usual tiredness, stomach disturbance, mouth ulcers. Haven’t lost my hair but it is thinner.

So I think your oncologist is right. I am also BRCA 1.

I know this chemo works for some and not others. Hopefully it will work for me. My oncologist has mentioned adding extra cycles if I am doing well on it.

I hope to find a maintenance treatment for the end of chemo but this will probably have to be a trial as I have had all the ones used by NHS.

I hope that helps you xx

[Pumpkininja in reply to Lyndy]

Thank you so much lyndin Hope it works for you 🙏🏼🙏🏼🌸

[Sherrym]

I was treated with carbo/Caelyx after my 1st recurrence, 6 years after OVCA onset.

I tolerated 5, was fine up till 4 then boom!

Straight into Oliparib & feel fit as a flea 2 years later. Bloods Checked every 2 months. Much much good luck & wishes to you….. & everyone of u lovely ladies out there this Christmas. Have a Wild Swim! Breathe 🧘‍♂️ In those family & friends & their enduring love & support!

[Pumpkininja in reply to Sherrym]

Thank you so much Sherrym I'm really happy it work for you.I got covid last week.. so all my plans are being postponed... trying to survive.

Wish all the Best to you and your family. A blessed and merry Christmas ***