Since my last post where I told you that the cancer had gone to the liver and next to the spleen, I have had my oncologist appointment. She told me that the as the growths in the lymph nodes had increased in volume plus there are new growths, the Avastin is not working and the cancer has managed to find its way round the treatment. Clever little bugger grrrrr.
Next plan is Caelyx plus yet another dose of carboplatin (this will be the third time).
My Ca125 is now 983 which has risen slowly over the last few months. Last November, when I started 2nd line, it was up to 6600, so the oncologist agreed to let me have a "chemo free" Christmas and go back to see her in January. Sounds like a good plan.
Just a question.......anyone else had this mixture and how did they find the side effects?
Many thanks in advance, love from Irene xxxxxxx
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Izzystep
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So sorry you've got to have more chemo. Make sure you have yourself a really good Christmas doing exactly what you want to do. As far as Caelyx is concerned I have had had this with Carbo (just finished), did not notice any side effects, Nada (zilch) as they say in Spanish! Bloods were OK too did not have any sessions delayed so I was fine (carbo OK for me too). Get to keep you hair too although they say some people (not all) might notice some hair loss. Take care.
Thanks Karen....love the Spanish, wish I was there now. Good to hear you coped well on this concoction, I only hope I don't get nausea. Suffered badly first line but I think that was the paxitacel. Have a good Christmas, I intend to eat, drink and be as merry as I can lol, love Irene xxxx
Did not get any nausea either. Found paclitaxel hard going, could not say whether had nausea as did not know what to moan about first on that cocktail, would rather do a bush tucker trial Lol. Got appointment with ONC this Thursday and then a scan before Christmas I assume. Feel a bit in limbo until that's over with although the plan is we are all going to my sisters on the Kent coast on 23 Dec and coming back day after Boxing day xxxx
I'm a bit worried about the bloods as I had many delays first line due to low bloods and a few blood transfusions. Thanks God for blood donors. I got up to gold bar before being diagnosed with high BP so had to give up
Good luck with the scan, let's know how you get on.
Have fun at your sisters - let's hope for no snow over the Kent Coast. Love Irene xx
Hi Irene, I haven't had any experience of this combination so just want to send best wishes. Hope you have a wonderful Christmas and every success with your treatment.
Sorry your treatment hasn't worked. I think your plan to have a treatment free Christmas is a good one. The only treatment I have had is carbo/Taxol. Caelyx has been mentioned but hoping to get through a year from 1st line to allow me to go back on same treatment. I'm sure someone on here will have had that combination.
Thanks Ann. That was my first line too, absolutely nearly finished me off lol. Very bad side effects from that chemo. 2nd lot wasn't too bad, gemcitabine and carbo plus Avastin. Hope this 3rd one doesn't have too many side effects.
Have a great Christmas and I pray it will be a long time before you have to have Caelyx. Love Irene xxxxx
Dear Irene, not had the Caelyx with Carboplatin, Carboplatin with Paclitaxel followed two months later by second line of Caelyx. I've read that Karen has had it. Best wishes for a relaxing and hopefully happy Christmas - it's what we all want.
I agree Pat, that's all we ladies on this forum want. A happy peaceful, pain free Christmas and a healthy 2015. With lots of positivity and a little help from the old chemo we should all achieve that. Lots of love Irene xxxx
Hi Irene, I agree with you, I am on Avastin until it stops working but I suppose I have a chemo free xmas too. I have been on the roundabout for many years I am still here, a bit more tired but I have very good days too. I have not had that combo so dont know the side effects but let it be for now, put it all in a box and have the best Xmas you can. Look at it this way by the end of May your treatment will be finished and you can enjoy the summer
Sorry Irene not had this combination. I too have the possibility of starting 3rd line after Xmas but not sure my cocktail yet . Hope you have a lovely Xmas xx
Sorry to hear you will be facing 3rd line in 2015. Please let us know what concoction you will be having. It's good to share treatments and as long as the oncologists can treat us we will be fine. Have a lovely Christmas and New Year. Love Irene xxxxx
Hello Irene, Caelyx seems to be the drug of choice at the minute as it has been mentioned a few times recently. I had third infusion of carbo/caelyx last Tuesday for 1st remission. Pros:- short infusions, no hair loss, no skin probs (altho I take Vit B comlex and B6 also for 10-14 days at infusion time and only cool showers) and no nausea. I feel relatively okay apart from an iffy day 4, dreadful day 5 and iffy day 6 but a 4 week infusion time which seems to make a big difference. Cons: very low blood counts, one deferred and emergency blood test this time and usual bowel issues and very strong burning urine (tmi!) I have a scan booked for begininning of December so I shall know then how effective it is. Enjoy the break!!!!!
Thanks for that advice on the vitamin B and B6, I will investigate into that. I have heard about not having hot baths and showers, so I will definitely bear that in mind. Not the weather to be having tepid showers so will have to make sure heating is in high.
I am trying to work out the best day to have this chemo, if I have the bad days in 4, 5 and 6. I would like to okay(ish) at the weekend so I suppose best day to have the chemo is on a Friday, then I get the 2 day steroids and maybe feel iffy Tuesday to Thursday. I will speak to the oncologist to seek her advice, but to be hi set they listen to what the patient wants so I am sure I can have it whatever day I like.
I'm going to have a Portacath fitted this time, which they have agreed to. Too many cannulas and bad veins.
Can't help with the caelyx questions, but a propos cannulas etc - I have had a PICC line set up and it is seriously my best friend. Works a treat: no pain, no more needles for bloods or repeated attempts at cannulas into bad veins for chemo, and it can stay in place six months. Got a GP-prescribed thing which fits on the upper arm a bit like a child's arm float, which keeps it admirably dry in the shower too - brand name 'Limbo'.
Totally recommend this way of doing things. When the time comes it takes 2 mins to fish it out and it is all nurse-led rather than requiring doctor's intervention.
Very best of luck when the next round does start, and have a fantastic Christmas in the meantime.
Hi Judith, I totally agree with the PICC line. I had one for my 2nd line chemo and had it taken out because I thought I had kicked the cancer in the butt!!!! Didn't think I was going to have to have 3rd line so quickly, or I may have kept it. Mind you it did itch quite a lot, but I understand there are new plasters that don't itch so much.
I think I am going to have a Portacath, just in case I have to have 4th, 5th or even 6th lines.
Just a cautionary note: I'd check out what your hospital practice is before making decisions based on possible future possibilities.
I'd got the impression that in the US some people seem ( perhaps because of the costs involved?) to keep Portacaths in on a pretty permanent basis, ensuring they flush them as necessary.
I had 2 PICCs and then they couldn't get the third one in so I had a Portacath. I assumed this would then be permanent ( also thinking a bit like you seem to be).
Not a bit of it. Clearly my London teaching hospital was bemused at the idea of hanging on to them longer than needed for the particular course of treatment, so out it came.
Staff like them and made jokes about how helpful it would be if people were born with them, and it was helpful to be able to do more things (swimming) with the Portacath than the PICC, but the whole procedure was a lot more of a faff and you end up with a more visible scar. Another time around, if they can get it in, I'd go for a PICC again, I think.
Hope this is helpful and I hope you enjoy this miserable grey day! xxx
Thank you Mac27 for this info. I don't know what my hospital practice is, but I do not want a Portacath put in and then taken out, I would hope to keep,it for a while. I will check it out before deciding.
My PICC was fine, apart from the itching, but summer was coming and I didn't want to have the cover on all the time, but too hot and sweaty for me lol.
Not too worried about a visible scar, I have a lovely one from under bust to way below belly button, ine more won't make any difference.
I started thinking about I'm a celebrity based in a chemo ward......now, that would be a real challenge for some of them... and many of them would be nowhere near as nice as the real people you meet!
Really impressed at you being able to pick and choose when you have your chemo... mind you, I never asked and it might be possible at my hospital too.
Just to echo Judith's comments on the PICC line.
Whether you have that or a portacath, you'll find it a whole lot less aggravating than the needle in the haystack search for a vein, so that's one less pressure. I've had both.
I love that ..... Looking for a vein is like looking for a "needle in a haystack" or when they can't find it. My poor arms are black and blue and purple and green, all colours of the rainbow. They have a rest for a few weeks, until January maybe they will behave better in the New Year, if not then it's definitely a Portacath for me.
I think I am going to stick with Barts Hospital as they have done me okay so far, however of there is a trial taking place somewhere else in London then I don't mind changing.
On 3rd line Etopiside/Carbo which seems to be working well for me. I would be lost without my port it's stood the test of time and chemo for 2 years now.
Wishing you a very happy Christmas and A successful 3rd line xxx Trish
Thanks Trish. I think my mind is pretty well settled on a Portacath. It's good to hear different views from ladies in this site. That's why this site is so good! Real people, real experiences, not someone saying "I can imagine how you feel" everyone on here actually knows what it like to have some of the stuff we have been given or done to us.
Good luck for for your 3rd line and have a great Christmas and 2015 xxxx
Izzystep, hi. Not been writing on this site, but have read posts regularly. I wish you all the best for after Christmas! We are in roughly the same situation:starting third line, but I do not know whether it is before or after Christmas, and which treatment it is going to be. Seeing my consultant in London on Monday morning. With my love, Marlies
Hi Marlies, sorry to hear you are going to have to have 3rd line and I am hoping it's after Xmas. Gives us a chance to enjoy ourselves without feeling too tired and sick.
My next appointment is 16th January, so I will probably start straight away, however my eldest daughters due to have her baby on the 17th January and she had her first baby 14 days early, so if the baby is here I will delay chemo for a while.
Have a great Christmas and a very happy and healthy 2015, irene x
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Second line treatment on the way
Last line of treatment(most likely)
A New Year and a new cancer. 😱
Update this is my 6th line of treatment Carbo/Caelyx
Successful first line treatment
