Choice of chemo drugs

[Cre27]

Diagnosed with stage 3 oc and have been offered chemo of carboplatin with taxol. I had stoma surgery 2 weeks ago in readiness for this. Although I'm new to the site, having read many of the posts I realise there are many of you who have already been through so much. So do any of you have opinions about this combination of drugs? Do you think the added taxol is worth doing or to stick to the carboplatin on its own? Any thoughts either way would be appreciated. Thank you!

[daisies]

hello. I suppose the final decision will be made by you and your oncologist. I have been on carboplatin & taxol twice before and just heading into last session (no. 6) of 3rd round - so I suppose I would say, the combination has worked for me. But others are on different drugs & combinations and there are usually very good reasons why such combinations are best for each of us.

Some of us react differently to the regime, and of course, there are many variations and stages of OC - so hence the variety of treatments.

if you have faith and trust in your oncologist & your medical support team, you are on the way to dealing with whatever happens.

Love & hugs as you face this journey.

Daisies. (from a very wet & windy Cork)

[Cre27 in reply to daisies]

Thank you. So much to get familiar with. Have been really impressed with care so far so as you say trust their advice.

[Cre27 in reply to daisies]

Thank you. So much to get familiar with. Have been really impressed with care so far so as you say trust their advice.

[Hidden]

I think the combination is reckoned to be the gold standard.

I was diagnosed 1c and when I had my chemo I only had carboplatin.

(I knew a lot less then than I do know and didn't know to ask why only the one drug, though others since have queried it).

I had a recurrence 18 months or so later and part of me wonders whether I would have done if I'd had both chemo drugs first time round. There's no way of knowing.

I did have both second time around.

If they're suggesting both for you, I'd go with what they're suggesting. These are international norms and the oncologists tend to know what they're doing.

Good luck with it all - there's a lot to get your head round!

[Cre27 in reply to Hidden]

Thanks you. I am finding it confusing to know what questions to ask.

[vipervictoria]

I had carboplatin only because my stage was erroneously noted as 1. It was actually 3c. By the time the error was discovered my CA125 was 3, so I stayed on carboplatin only. I haven't recurred as yet. But that it probably because all visible cancer was removed during surgery. According to the ICON 3 study in the early 1990s, carboplatin can be as effective as combination chemo, BUT it has to be given in a certain way. That is starting at AUC 5, then going up to AUC 6 and finally AUC 7. Since then, carbo & taxol has become the norm. A lot depends on what happened during surgery. If I had my time over, I would probably go with combination or IP. Best, Vx

[Cre27 in reply to vipervictoria]

Thanks. There is so much I need to get my head around and to understand but I think this site will give me so much help.

[Aliroo]

Hi there

My mum had 3c and only started off with carbo (she was vain and didn't want to lose her hair and eye lashes) - carbo on its own DIDNT touch Her (made no difference) so she then had 9 sessions with carbo and taxol!!! Yes she lost all her hair and eyelashes but they've grown back beautifully.

It's a personal choice but wishing you all the best

Xoxoxo

[Cre27 in reply to Aliroo]

So much advice available from all of you. As my care has been good so far will go with combination chemo and get some head gear!

[valeriel]

It isn't too long ago that I was in the same position as you are. I had two lots of debulking surgery and chemo was used to "sweep up" any microscopic remains of the cancer to give me the best chance. When they gave me the choice I felt that I wanted to throw everything there was at the problem and decided on the combination. However, first session was fine but I re-acted to the Taxol on the second session. Reduced dose tried on the third and I re-acted again so was taken off the Taxol. I was concerned about what this meant but was re-assured that Carboplatin is the gold standard but they have Taxol as well so they use both. Sounded as though they want to throw everything they have at the problem too!! I lost my hair and sometimes thought that if I had just had the Carboplatin that wouldn't have happened. On the other hand I am glad I tried as I felt I owed it to myself and the oncology team to do everything I could to reduce the risk of the PPC returning. Now 4 months since last chemo, September scan clear and feeling about 97% with a few aches and pains, usually when I overdo things!!! I think those of us who feel we have a good health team helping us are very fortunate and I would certainly trust my oncology team to make the right decisions. Then I think you have got to trust your self in making the right decision for you.

I don't often write on this web site but I read it avidly so thank you to you all out there for sharing your experiences and providing the support that only we can provide for each other. I hope that when I have stopped overdoing things I might have more time to join in. Love to you all.

[Cre27 in reply to valeriel]

I feel a bit like you that I need to throw everything at it from the off. I have been advised that if side effects are too much then I can stay on just carbo. Thanks for your advice, really helpful. What a great site it is!

[Hidden]

There's a lot of advice on here about coping with hair loss - the search box top right isn't great, but if you type in, say, "hair loss", and press the enter key, you'll find loads of conversations and tips. We all respond differently. One of my friends from the chemo ward didn't lose hers on taxol....

There are pluses to losing it.... some women have beautiful heads; for those of us who have always had straight hair, you get waves or curls sometimes - for a time - when it grows back - wow! I lost all my grey hair the first time and I've still got less than I had six years ago now. Eyebrows and eyelashes tend to go later than head hair and if you can access a Look good, Feel better workshop ( or look online) they have great tips on using makeup while being treated.

I've lost mine twice and my tips would be: don't shave it all off but have a number 2 or 3 cut; start eating selenium supplements or brazil nuts now as there's some suggestion this combats chemo hair loss ( it may have helped me hang on to more of mine second time around).

xxx

[Cre27 in reply to Hidden]

I have very curly hair at the moment! Am I likely to end up with an Afro look when it regrows????? Some good tips so thank you.

[totty in reply to Cre27]

Mine came back a little curlier but no where near an afro, it could be straighter no one knows. Good luck with your treatment, I'm 2years clear, still get tired but generally ok.

[Jackie0]

Hi,I was still pretty weak after my surgery last May,so my chemo was delayed until the end of August.I decided to go with Carboplatin only,as felt my body would not cope with Taxol as well.Hald way through my treatment last month the nodules in my lungs had shrunk by 50% so I was well pleased.Have had severe exhaustion and breathlessness side effects due to low bloods so really feel I could not have coped with the double dose.

Bottom line is that you have to listen to your gut feelings about the treatment!!

Best of luck xxxxx

[Cre27 in reply to Jackie0]

Many are saying listen to what your own body is telling you. I guess I'll just have to see what happens and adjust along the way.

[kazrazmataz]

Welcome to this site, you will find a lot of support on here as know its very scary to be here, especially when you are first diagnosed, most of us feel better when out treatment gets going believe it or not.

Firstly I have recently finished my treatment and bottom line is I am feeling very well, they are sending me for a non urgent scan and the plan is to see me every 3 months for the first year. Next appointment not due until end of Feb. My ONC said just to have carbo on its own and they would give me slightly more. This I did for chemo 3 but felt compelled to push them for an alternative chemo drug so I had carbo plus a chemo called Caelyx but I don't think they recommend this as a first option as the standard is Carbo /Pacli.

Talk to your ONC and. Personally I would have both as would go with the standard treatment. If you do get more side effects (remember not everyone does) then you can reconsider carbo alone or if like me you get a fairly uncommon allergy ask for alternatives, one is another Taxol called Taxotere which is the same drug but mixed with different binding agents that are less likely to cause allergies.

[Cre27 in reply to kazrazmataz]

So much good advice. I see my oncologist on Tuesday and feel better equipped now to ask valid questions so thank you all, not only for advice but good wishes etc. don't feel quite so alone.

[Hidden in reply to Cre27]

Hi there and welcome to the site, I had carbo taxol for first treatment back in 2006 and I am still here, that is the good news. I was told my hair would fall out and so I checked out hairpieces before chemo started, and chose one. Looking at a picture the other day taken at that time, I cannot for the life of me agree that I was wearing a wig it looks so natural. In the usual Joan form, when the hair started to come out I went back to the stylist and got head shaved. My thing was okay I may have cancer but the chemo doesnt say when my hair is going, I do. So that was the start of fighting back. I did have nausea and constipation but learned how to manage it. I have had a two regimes since and am doing okay so I would recommend the combo. Just make sure you get the best anti nausea tabs going. Motillium never worked in all these years with me. Wishing you the best and do let us know how you are doing. J

[Cre27 in reply to Hidden]

I'm truly getting overwhelmed by all the messages. So much sound advice. Although really pleased with the care I'm receiving there's nothing like hearing from women who have been going through it and their thoughts.

[Cre27 in reply to kazrazmataz]

There is so much to learn but getting so much useful info from everyone. A huge thank you. Will go with both and then see what my side effects are.

[AnnieMae]

If you can tolerate the 2 I'd go for it. My aim was to throw the big guns at it and didn't care about hairloss (taxol). Unfortunately I had reactions to Taxol so only managed 1.5 doses but continued with carbol and went 18 months. Just completed first cycle of 2nd line of carbol and hoping it will work again.

Good luck with your decision and treatment.

Annette xxx

[Cre27 in reply to AnnieMae]

Most seem to say hit it with every thing and adjust further down the line if effects are too much. My mind is made up. Thanks everyone. Will keep in touch.

[mummybear59]

Hi, you've been given good advice on here and I think you're decision to try the combination is a good one. They won't let you suffer if you do have bad side effects but I have to say I had no problems at all on carbo/taxol apart from a little tiredness towards the end of the day. I managed nice long walks on the clifftops near home 2 or 3 times a week and some nice weekends away. The anti sickness drugs did the trick and if it hadn't been for the hair loss most people would never have guessed I was going through chemo. Everyone is different of course but work on the fact there's a good chance you'll sail through chemo knowing there's a backup plan if not. As far as hair loss is concerned I really wasn't bothered and although I did get a wig I only wore is twice and ended up using lots of pretty head scarves mainly from charity shops. It might be worth asking about the cold cap though as my cousin used it and managed to keep her hair although it did go very thin. It's put on before you start your chemo and for about 4 hours I think? She did say it was uncomfortable initially as it freezes your head and I think you have to balance the discomfort with the fact it MIGHT not work anyway?

I managed 16 months treatment free after first line but hopefully you'll zap it all and it won't come back at all!!

I started second line on Friday with carbo/gem/avastin and so far so good so fingers crossed it stays that way and I get another decent 'remission'!

Take care and keep us updated.

Love MB X

[Cre27 in reply to mummybear59]

Was going to ask about the cold cap but to be honest loosing my hair at the moment is not a big issue. I'm sure I'll look very strange and maybe frighten the local wildlife!! All the best with your treatment and hoping it zaps it again for a long remission.

[TrishLey]

Taxol/Carbo is the protocol of choice for 1st line treatment. I've only heard of single treatments if someone has an allergy to one or the other. I would go with what your oncology team suggest unless you have a very valid reason for not doing so. Wishing you all the best with your treatment.

Xx

Trish

[Cre27 in reply to TrishLey]

I think this is what I must do. All you lovely ladies say the same that if the reactions to both is excessive then at least I've given it a go.

[thesilent1]

Hi, welcome to our 'club'. As I was told by my oncologist, carbo/Taxol is the gold standard treatment for ovarian cancer within Europe. I wanted the best so opted for both, wasn't given a choice really. The Taxol makes you lose your hair but it soon grows back. In my opinion, the oncologists are the specialists, more knowledgeable than me about the drugs for this awful disease and I will always be guided by them.

Good luck. Ann xo

[Cre27 in reply to thesilent1]

As you say they are the experts and to go with them. Have learned so much already but so much more I know.

[Whippit]

Hi Cre, and welcome! This thread takes me back nearly four years when I was first diagnosed and I remember feeling in a complete daze and I didn't know what questions I should be asking. You will gradually make sense of it all and this forum is fantastic for sharing information and getting feedback and loads of support. There's also an excellent Nurse-led Helpline if you want to talk something through. 0845 371 0554.

The combination of carboplatin and taxol is the Gold Standard so most women are offered this. One very good reason for trying this regimen is that you will be eligible for more clinical trials many of which require patients having had a common treatment path.

I was prescribed the combination but my first hospital forgot to order the taxol so I had carbo-platin alone. At the time I felt some relief as I wouldn't have the worry over losing my hair but in hindsight I wish I could have had both. I was told they work slightly differently so cell death occurs at a slightly different point with carboplatin and taxol and this maximises the effectiveness of chemotherapy. I understand carboplatin is thought to do 90% of the work.

I hope you continue to build up your strength and keep well through chemo.

Take care. xxx Annie