Caelyx chemotherapy

[Lindalou19]

I have to have more chemo and are having Caelyx. Anyone who has had experience of this any tips. Start on 5th April. Thanks in advance x

[Tesla_7US]

LindaLou, have them ice your hands and feet before, during and slightly after chemo infusion to prevent peripheral neuropathy and hand/foot syndrome. You can use zip lock bags of ice that are bound with stretchy ace bandages to hands and feet. Yes, it's a bit uncomfortable but it absolutely works. Also, stay out of sun! Caelyx makes your skin extremely photosensitive. It also dried my eyes and mouth so get eyedrops and moistening mouthwash. I am in remission, again.

[busbee3]

Hi. I had four infusions of single agent Caelyx and the side effects were tolerable. I was tired for about a week after and felt slightly unwell, but every day after that, I felt a little better. I did have some nausea, but they said that's rare. The big thing is to moisturize your feet and hands several times a day and wear loose footwear to avoid hand and foot syndrome. The nurse recommended Udderly Smooth hand cream and Bag Balm and I had no problem with hands or feet. The other thing they suggest is to keep your mouth clean by rinsing with soda and water, and brush very gently so as not to cause mouth sores. Unfortunately, the Caelyx didn't work for me. I hope it goes well for you.

[Hopefulgal1]

Hi lindalou - get a great antiemetic antisickness ( emend?) as I suffered nausea ( although I had it with carboplatin so may have been that!) Caelyx is notorious for skin rashes etc but do get a great moisturizer like Moogoo and use on hands and feet etc and you’ll be fine xxx good luck! 👍

[Lindalou19]

Thanks for suggestions I have the info from oncologist about Caelyx just and have had carboplatin before so will see how I go.

[ShropshireJo]

Hi Lindalou. I was told this afternoon that my OC was growing again so will be starting Caelyx in the next few weeks. Let’s hope it works for us both and the side effects are manageable. Jo 🌺🌼🌸🌻🌹

[Lindalou19 in reply to ShropshireJo]

Let's hope. I am starting on 5th April so only a few weeks to wait thank goodness. Hope you don't have long to wait 🍑🌻🌹

[ShropshireJo]

I’ll let you know how I get on and hope you will keep me posted too. All the best xx

[Travelmonster]

I'm also starting Carbo/Caelyx on Thursday, good luck ladies, fingers crossed it helps us all. Much love

Paula xx

[ShropshireJo]

Hope it goes well Paula. It’s only five months since I finished a platinum based chemo so it’s just Caelyx this time. A new experience! Such fun!!

Love Jo 🌺🌼🌸🌻🌹

[Travelmonster in reply to ShropshireJo]

Thank you Jo, I'm about 5 months from my last platinum based chemo too, I wondered why I'm being given platinum based again and my oncologist said because it's quite close to the six month mark for me. Let's hope the Caelyx does it's job for us both. Much love Paula xx

[Lindaura]

Hi Linda,

I just had my last infusion of Carbo/Caelyx yesterday, which has knocked my first recurrence back from a CA-125 at 473 at the start to 15 now and I still have 4 weeks to go, with my last scan on 8th of April.

I have found this regimen a walk in the park, compared to First Line, which was extremely hard on me.

So, unlike the others, I had almost no problems with my skin and stopped moisturising, except my usual face care in the morning, because my feet and hands remained smooth and silky.

I DID have a problem with Nausea the first few days in the first week,

But my Oncologist immediately prescribed Aprepitant “Emend”, which has been amazing.

I do stick to a rigid anti-nausea/anti constipation regime starting the first morning after infusion day.

When I wake, I take the Emend, along with an Omeprazole ( which for me helps keep food down) and an Ondansetron, just for reassurance. This is very effective, but can be very constipating.

An hour later I have a piece of toast and jam or a small bowl of Cheerios.

Then I take all 4 of the steroids- Dexamethazone along with ducosate sodium to counteract constipation.

Sometimes, if I feel queasy, I take a Cyclizine, which is an extremely easy anti-nausea med, which is not constipating and which you can take pretty much freely throughout the day. It can make you sleepy, so that can come in handy the first week.

The first week is pretty much filled with fatigue and I just lay low, spending much of it in bed. The fatigue gets worse the last two days, so on the 6th or 7th day, you can feel very bad and breathless, and you begin to think you will never feel better, but then: on the 8th day, you wake up feeling pretty normal and can begin to resume nearly-normal life.

Unlike first line, there is no brain fog, so you can drive your car! You can shop! I try to take little walks each day, BUT, I have to admit, I get exhausted by 4:00 pm and need to rest for a least an hour.

But later I can help with dinner and the clean up after.

THE BAD STUFF:

Carbo/Caelyx is tough on your bone marrow, so Neutrophils, heamoglobin and platelets can go very low and if dangerously low, you have to wait before your next infusion.

That is why the infusions are 4 weeks apart instead of 3 weeks, so your bone marrow can recover.

Each month, I go in for my blood test 48 hours before, only to get a call the morning of my infusion to tell me that my bloods were too low and to come in early for another test. For me, this is okay, as I live 5 minutes away. Happily, by that time my bloods are good enough to pass the test, and the infusion can go ahead, but it makes for a very long day.

Usually the infusions take about 3 to 4 hours, but waiting for blood tests and then the chemicals to be ordered, it can take 6 to 8 hours hanging out in the hospital, mostly waiting...so bring a friend to entertain you!

There you are.

We are all different, so you will not know how this will affect you. I hope you do really well, as I did.

I am BRCA1 positive and I feel very optimistic about the future, as I plan to go onto Niraparib next and I plan to do well on that forever,

Best wishes,

Laura

[Lindalou19 in reply to Lindaura]

Thanks for the tips it's been good having someone who's just gone through it recently and I appreciate the info. I too am BRCA 1 positive so trying to stay positive. My skin is crap anyway so am going to have look out for problems. The oncologist mentioned a tablet after carbo/caelyx so will have to see what happens xx

[Lindaura]

Dear Lindalou,

I just went back to your profile page to read up on your experiences so far. There were only two posts and you have not wrtten your profile story yet.

It really helps us all to read about your particular journey.

When I finish this chemo and have my last scan, I will post an update here and i will update my profile page.

In the meantime, here is more for you: as awful as it is, the upside of being BRCA positive, should make you a better candidate for successful chemo now and a good candidate for the targeted therapy called PARP inhibitors, and it looks like they are planning to give you Niraparib, when you finish the Caelyx. This is a good thing.

Just to add, when I spoke earlier, I was feeling pretty good, one day after infusion, but now, later in the day, I am totally exhausted and have no desire to leave my bed.

Just so you know what to expect.

I know I will feel better in a week, and I am not worried.

Oh, one more thing. How are your litany of problems left from your surgery?

And how did you wind up with Uterine cancer? Were they certain it was not related to the OC?

Thanks for listening and please write your profile soon.

Hugs,

Laura

[Lindalou19 in reply to Lindaura]

I have done the profile just didn't have time what with new job and other stuff. I had separate ovarian and uterine cancer which I know sounds daft but wasn't spread from uterine which is what you would think and at the time I just wanted it operated on etc. I had a massive bleed the year before but ultrasound showed no issues but this may have been the start of it. I was advised to use alternatives to HRT which may have contributed to it as well I will never know and don't want to know. I have a good nurse practitioner at the GPS surgery that I speak to and the team at JCUH are great but I joined this group to try and find local counselling as still got issues with guilt etc.

Anyway hope you're feeling better soon x

[Lindaura]

Thanks for that, Linda,I know it’s hard to keep up with corespondence in our situation. My first year in the depths of my illness, my adult daughter took over. My family lives in the USA and she became the one to inform the family of what was happening to me as I was too weak to even text. She sent out a daily updates until the successful end of my first line treatment, but now sends out a weekly update. Fortunately, she is a skilled communicator, so no one gets bored.

Even though we moved to the UK 25 years ago, we are close to all our cousins spread across the USA and I have 3 siblings in LA and San Francisco, as well as a 97 year old mother, frail, but smart as a whip, living with my sister in San Francisco.

We split the BRCA gene, inherited from my father, who died at 43, so just one sister and my daughter have it, but we notified all our cousins, just in case.

What a weird experience this has been and continues to be.

I wish you all the best in your new treatment.

Kindly,

Laura

[Flamingobeef18]

Hi

I am just about to have my seventh Caelyx infusion with one more to go after this.

I too take Emend, Cyclizine and ondansetron for nausea but no steroids due to me having diabetes.

The main side effect for me has been fatigue, sometimes sleeping for 20 hours out of 24. My Oncologist did reduce my dose to 90% which has helped a lot without limiting its effectiveness too much apparently.

My skin has got sore as the treatment has progressed but not too much. Moisturizing hands and feet is very important. I use the Udderley cream, much to my husbands amusement! Have also found L’occitane very intensive hand cream and Eucerin 10% urea repair creams very good. I now have tubes at every sink in the house.

My dentist prescribed me Duraphat 5000 toothpaste which is very high in fluoride to protect your teeth during chemo and also has none of the “sting” of normal toothpaste if your mouth is sore. This has been brilliant.

My Oncologist has been very hot on not reducing the gap between my chemos at all but has been flexible on delaying infusions if life got in the way such as over Christmas.

Hope you get on with it okay.

All the best

Juliax

[Lindalou19 in reply to Flamingobeef18]

Thanx for info x

[avid]

I am on my second infusion of caelyx and carboplatin for my second recurrence. Feeling a bit tired today but only had chemo on Tuesday. I find that keeping on top of the sickness helps a lot. Good luck.

[Lindalou19 in reply to avid]

Thanks for your advice xx