here we go again!!

just come back form seeing oncologist, seems my scan was not clear and my ca125 had gone up to 1375!, so from Monday I will be on Caelyx every 4 weeks. any advice as to what I can expect will be appreciated, this will be my 3rd line. It is 11 months since I finished my last chemo, and have been on Avastin since then. Hay ho, and away we go!! xx Jeanette

50 Replies

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  • Oh damn! No experience, but I know you are made of tough stuff. Sending you a great big hug xxx

  • thanks yosh!! xx

  • Really sorry to hear this Jeanette. But you go girl and kick into touch x

  • thanks xx

  • Hi sorry to hear your scan results were disappointing. I am just about to have 6th round of caelyx for recurrence. I have it with carboplatin. I think the side effects can vary quite a lot. The worst one for me has been fatigue which doesn't go away. Also dry skin on hands and feet. I haven't had the cracking and peeling some people experience. I've used Aveeno cream which my hospital prescribed and I think it helped. You're meant to stay out of the sun & avoid getting too hot. And there is the usual nausea tummy upset etc but I don't know how much of that is the carboplatin.

    I must admit I've found it hard going at times however it's been effective as mid way scan showed a good reduction in tumour sizes and CA125 came down. Although it seemed really daunting at the beginning the 6 months has seemed to pass much more quickly than first line treatment! . I I hope it all goes well for you,

    X

  • thanks Elizabeth, staying out of the sun and not getting hot can be a bit of a problem, I live in Spain and it is 30 degrees in the shade at the moment!! but I will take your advice and get stocked up with Aveeno cream. I cant have carboplatin as I was allergic to it last time, so just getting caelyx. xx Jeanette

  • I'm sorry you've not had good news Jeanette, I have no experience of caelyx but I just wanted to send you my best wishes for as easy a ride as possible with this next treatment. Big hugs and lots of love ❤️ xx Jane

  • Thank you Jane xx

  • Hi Jeanette poor you and bloody disease... I hope you get all the info you need to fight the next part of your journey. I wish you all the best and keep us all posted. Love Michelle x

  • thanks Michelle. xx

  • When I went to the Queen Charlotte for my second opinion caleyx is one of the drugs she suggested for my next treatment which I hope won't be soon after this one! She didn't recommend Taxol said it's too harsh also suggested gem both with carboplatin. So sounds like a good choice to me the queen of anti chemo lol

    LA xx

  • thanks LA xx

  • I had gem and carbo last year, and had to stop the carbo as I reacted badly to it, so it will be caleyx only. thanks for the info. keep up the fight! xx Jeanette

  • So sorry you are back on treatment. I don't know much about your regime but I can vouch for Avenno. I wish you well

  • will get stocked with Aveeno!! xx

  • Hi I'm so sorry you've had a recurrence. It's like being hit in the face each time isn't it? I am presently doing Caelyx and Avelumab which is an immunotherapy in a clinical trial right now. I have found with Caelyx that I don't have the fatigue, hair loss, and low white blood count that I had with Carbo/Taxol. For the most part, I have felt like my old self. In fact, I am going to try going to work one day a week starting in September! However, I have experienced some other negative side effects of Caelyx. I had awful mouth sores a few weeks ago, and blistering skin that felt like a sunburn on most of my body. My skin on my hands and feet also peeled. I skipped one of my treatments and got the next one again today. My oncologist has lowered my dose of Caelyx in hopes of preventing those side effects, so I guess I'll be able to see how its going in a couple of weeks. Hang in there. You may not experience the side effects that I have. I hope it goes well for you! Kim xx

  • thanks Kim, keep me posted with your results, and I hope all goes ok for the rest of your treatment xx Jeanette

  • Thanks Jeanette. I have another scan on Tues. Feeling a little nervous. Will keep you posted. Kim xx

  • My mom had her first caelyx treatment 3 weeks ago.. Her hair continues to grow after losing it twice on carbo/taxil. So thatis a positive. She finds this chemo has made her very sleepy, naps several times during the day. She is having some mouth sores, but she did with previous chemo too. All the best to you.

  • thanks.

  • Hey ho indeed. Just finished 4th line caelyx with carbo. Best chemo so far, though haven't yet had the scan but CA 125 has been coming down. Prevention is better than cure. There have been lots of recent discussions about it. If you type caelyx into the search box top right and then press enter key you'll find everyone's top tips, including mine. Best of luck xx

  • Hi. I keep reading about this search box, but can't find it on my screen! Am i completely blind or just stupid?

    Is it above the "following" and "write a post" and is it an icon as i certainly can't see a search box.

    Sorry to sound so dense, Jenny

  • Right up at the top - find the banner along the top with HealthUnlocked at the left, then your name, my communities a little bell, Help and then there's a "prefect's badge" shaped box with Search My Ovacome......Got it? It doesn't leap out at you!

  • Thanks. X

  • thanks Mac. will try that xx Jeanette

  • Hi Jeanette- sorry to hear this news but you are a fighter. I have had two lots of carbo/caelyx and it's not bad but be prepared in case of constipation! Also had a couple of small ulcers in my mouth with dose number two but was given a mouthwash that helped so it's really do-able though you might not have any trouble at all with any luck! Let us know how you get on and best wishes

    Jane x

  • Thanks Jane, I am used to constipation, and have all sorts of potions to take if needed, (from last lot of chemo) not looking forward to mouth ulcers though. might get some bonjella in as a stand by. xxx Jeanett

  • Sorry to hear your news is not so good Jeanette but you have already shown us how much strength you have to get through the last two and know you can knock this one too. Best of luck with the treatment xx

  • Hi Jeanette and yes I had caelyx only for 2nd line treatment - I can only reiterate the same side effects as Kim; ended up having a dose reduction due to infected skin problems which was a massive improvement!

    It is a very slow acting chemo so don't be too concerned if 125 goes up before down if that makes sense! !

    Good luck with beating the b.....d back! !!!

    Love Maz xxxx

  • thanks Maz. will try not to worry if ca125 goes up at first, but I intend to beat this bugger, so will take whatever comes. xxx Jeanette

  • So sorry to hear about your recurrence - I haven't had Caelyx but wish you all the best - my oncologist has mentioned this as a possibility for me in the future if Olaparib doesn't work for me. Good luck with this treatment .........and keep us posted!

    Juliet x

  • thanks juliet, xx

  • Some useful info/ tips on caelyx here... I had my second ( 25% reduced) dose this week as although I don't have any sickness or sores - i have felt continuously lacking in energy, stamina and foggy headed for the last 3 months ever since the disease came back after finishing carbo/ taxol at Christmas and avastin failing for me soon after....also struggling with maintaining weight.

    Also shocked to learn that Ca125 had shot up to the low 3000 ( nearly the same on diagnosis last July) from a wonderful 30 immediately after first treatment.

    Given low dose steroids ( 2 mg daily) till next treatment to see if they can lift me, but a bit worried about taking them continuously. Anyone else on these?

    You did well to last 11 months and stay on avastin, I think caelyx is a much more tolerable drug...I hope I can stay on it.... all the best janet 🌈

  • Hello janet

    I have just finished my 2nd line chemo. I had a recurrence after 11 months without avastin. You are still considered platinum sensitive so I would ask the oncologist why they are not using carboplatin again. I received carbo/gemcitabine with 3 weekly avastin for my 2nd line treatment.

    As for your wait, maybe you can add protein shakes to your diet.

    Take care

    Marijke

  • oh dear Janet, sounds very worrying, hope you get sorted. I think I am just going to have to wait and see what it does or doesn't do to me. xx Jeanette

  • Hi, i am on caelyx 4th dose. I had a port cath fitted as my veins are shot. Great not to have that painful iv every time. I have had constipation, sore heels dry skin, mouth ulcers,thrush down below, acid relux, sickness, cough. Most sorted with medication. I keep going must do. Looking forward to a pamper day at maidstone next week. I believe the caelex has stopped a quick rise in my ca125 so am optimistic. I do try & eat healthily too but am loosing weight. I wish you well will watch your progress.

  • thanks Anthea, hope you enjoy your pamper day, I believe we all need something like that now and then, xxx Jeanette

  • I'm so sorry to hear that. I don't have any experience I can share either, I'm 11 months out of my first line of chemo and so far all going along ok.. You are such a trooper and inspiraton. You will be in my prayers.

  • thank you. xx

  • the mouthwash three times a day and routine use of good moisturiser meant...I think....that I didn't get most of the caelyx symptoms. Still tired though. Best of luck....for me it was one of the better drugs Chris xx

  • thanks Chris, hope I don't get too many symptoms like you and will find it not too bad xx

  • Thinking of you Jeanette!

    Dx

  • thanks D, hope you are ok.xxx

  • I am great Jeanette!

    Enjoying the summer even if I am working for most of it but not complaining!

    Hope the treatment doesn't hit you too hard!

    Keep in touch and take care!

    Dx

  • Ah Jeanette - just getting my feet under the table after my trip and saw this. I'm so sorry to hear about your scan and CA125 results...I can't offer you any advice but by the sounds of things, those big girl pants have been pulled out, shaken off and donned and you will not take this lying down. Give it hell girl...thinking of you. Jemima xx

  • there goes my trip to New Zealand, at least for a while. glad you had such a good time, and a draw wasn't that bad!! xx

  • The draw was indicative of the series - strange feeling immediately after but on reflection it was a fair outcome. When you're ready to start planning your trip let me know 😊 xx

  • Damn and blast Jeanette, so sorry to hear this, hold that thought on your trip to New Zealand, get this recurrence sorted and you can re-plan your trip! Hope treatment goes ok. Sending you a big hug, Kathy xx

  • Sorry to hear this Jeanette, Keep your chin up and battle on. We're all think of you.

    Best wishes, Zena x

  • Sorry to hear you are back in treatment wishing you love and prayers!

    Pat🙏💕

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