Dont know which to choose

[tips]

Hi All

Carbo/gem or Cisplatin/Caelyx ? Any advantage of one over the other and not that we wish to make these choices - but which would you choose assuming no allergies to either combo ?

Thanks Pam

[Lindaura]

Gosh Pam,

I am currently on Carbo and Caelyx and finding it quite tolerable.

By tolerable, I mean that I am basically bedridden for the first week, but usually by day 8, I can get up, take a shower, make coffee and clean the kitchen.

From that day forward I lead a semi normal life, for the next two or three weeks, taking short walks, doing a bit of shopping and sometimes preparing dinner, but always cleaning up afterwards.

I get pretty exhausted after my walks and rest most afternoons, but i am doing pretty well.

About to have my 6th and last infusion. And my CA-25 has gone from 473 to 17, and my midway scan showed only one teensy bit if cancer left.

I have heard that Cisplatin can be a lot tougher, so I would ask about Carbo and Caelyx again.

That’s my input.

Wishing you all the best,

Laura

[tips in reply to Lindaura]

Thanks Laura

I've been to two different consultants and both are recommending different things! Pros and cons for both I suppose but I just want them to tell me which will work! 🤔

[Lindaura in reply to tips]

I still would try to convince them to change to Carbo/Caelyx, reminding them that you can shift to gem or cisplatin, if you need to later.

Just saying....

Laura

[Hidden]

Hi Pam, I can't offer advice on which to select but perhaps ask your team whether if you have one combination now you are able to have the other combination in the future (if you need it and hopefully you won't!). My guess is you can, provided you don't become platinum insensitive. I believe they are both effective treatments, so the choice may come down to the regime - weekly, fortnightly etc and which is right for your circumstance.

Best of luck, Dawn xx

[tips in reply to Hidden]

Thanks Dawn... Think I'm going to be back to the for and against lists and will add the it's you've mentioned when I get the answers... These lists are getting damn long!! 😛

[Lucidalil]

Hi Pam, I have had carbo calyx twice and tolerated it really well, however on my last chemo I went allergic to it which can apparently happen any time especially when you have had it before as I had.

They changed my remaining 2 cycles to cisplatin/ gemcitibine 2 weeks ago and it floored me, just beginning to feel better. I am not a stay in bed and keep going normally including helping my friend in her farm, still trying to get my energy levels back. Saying that I still intend to have my last one next week , my ca 125 is down to 21 so the chemo is doing something.

Maybe try the carbo combo , then if you do have a reaction you have the cisplatin to fall back on and are aware that you may probably feel worse on it .

Wishing you all the best

Carolyn xx

[Lucidalil in reply to Lucidalil]

Just to add, I did go carbo resistant 5 years ago, but they do try it again if enough time has passed. Even when I had the severe allergic reaction in January the hospital took me in for de sensitisation, I was fine on that chemo but unfortunately I had yet another reaction on the next so can’t have the carboplatin now , but I was fine on it’s sister drug cisplatin 2 weeks ago and have it again next week

Carolyn xx

[tips in reply to Lucidalil]

Thanks... That sounds like a plan... Don't particularly like the idea of not being able to do much - it's not stopped me so far and want very much to carry on like this... Hope the rest of yours goes well. Pam x

[harpist_UK]

As regards cisplatin/caelyx, it isn't available at all hospitals - the Christie had to apply to one of their committees asking if I could have it, and it was refused for some reason. So it may not always be a possible combo. I would follow the guidance of your team on this. x

[tips in reply to harpist_UK]

Hi... Both have been suggested by different consultants at different hospitals so I guess I could have either if I went to the right place. You're right though I might not be able to have what I want where I want it so something else to throw at that decision tree!! X

[Hopefulgal1]

Perhaps also take into consideration which team and oncologist you are happiest with? It made me move halfway up the country though..!! I have had Carbo Caelyx ( get a v good anti sickness with this) and yes it floored me first week but I had the rest of the month to be normal but am currently on cisplatin gemzar and it’s tougher. I would go the usual route of Carbo Caelyx first as that I believe is usual route? Good luck x

[Maxjor]

You getting great input. When I recurred last, my oncologist offered either--Carbo Gem or Carbo Caelyx and he felt either would do the same for me. I (we) chose Carbo Caelyx because we had heard it can be less harsh and less infusions although my onc said Carbo Gem might eventually be one of the future cocktails. I guess what I am saying is in this case, it might really be up to you based on your choice of frequency of infusions and side effects (from what others say or what input you may get). I found Carbo Caelyx quite do-able--the first few days I didn't feel great but then there were about 3.5 weeks of feeling quite normal during the six cycles. And as hopefulgal says--get good anti sickness meds for the first few days after (and of course, day of). Wishing you luck with your decision. oxox

[julia8163]

Hi.. I finished cisplatin Dec 3 2018, had a positive result from it. You will be very tired in the evening's and y will have ringing in the ears. I was warned by my

Oncologist that it was much stronger than the caeylx but I was fine with it but I was extremely tired. Hope this is helpful to you. Best of luck.