🎡 Carboplatin roller coaster conundrum ?

[IrishMollyO]

Hi everybody

First of all I want to thank all the kind ladies who replied to me last week as I agonised over the merits of Carboplatin only as my treatment for recurring PPC. If I didnt thank you individually I am sorry as it was my intention to reply to everyone. I really appreciated every single reply and it certainly helped me to clarify everything and make my decision . My treatment starts next Monday.

You may wonder why I am on again if I have made up my mind. Yesterday was my day for all the pre chemo check ups and talk with the CNS. Just a few things they said scared me so maybe you could just put my mind at rest about some of them. I was happy enough leaving the hospital with my sister in law who accompanied me..

1. Allergic reactions. If I tolerated it first time 5years ago will the reaction be less severe?

2. I was told if I had no adverse reaction for the first one they would increase the dose.

Has anyone else had that experience and if so how did it go ?

3 . The hair question. How thin does it get and is it very noticeable ? I'm thinking another wedding and looking like a scarecrow !

4. I know that yesterday's talk said no alcohol and I genuinely forgot if I could raise a toast and have a sip !

To be honest girls I am now so scared and I was really brave yesterday. I thought bring it on ! Today i just want to curl up in a corner and hide away from the world . I had a mental block about even putting up this post . You must know my style by now . Why use one word when I can use 10 , is usually my way ! Thanks for reading this .

XXX

[Chamber]

Hi Molly

Can't really help with any advice about carboplatin, but wishing you all the best and thinking of you on Monday.

love Judy xx

[IrishMollyO in reply to Chamber]

Thank you Judy

I really appreciate your good wishes. It all helps very much

XXX

[Julie40]

Hi I had carbo and caleyx for recurrence of PPC. I had a reaction on dose 1 to carbo but they lowered the dose and infusion was over an extra 3 hours. It was fine and they were able to increase again the following week and didn't occur again.

My hair thinned ever so slightly but nothing noticeable other than on the shower gray, the rest of my body hair disappeared and I was happy with that.

I had an occasional glass of wine. Didn't do me any harm.

Recurrence is tough and very emotional but once you get started on treatment you will be on a mission to get through it all. Good luck for your treatment. Hugs xo

[IrishMollyO in reply to Julie40]

Hi Julie

So good of you to give me that detailed reply. It is so encouraging and helpful. I know I am also very anxious and overthinking everything.

I particularly liked the bit about being able to have a glass of wine now and then ! I remember when I was told 5 years ago that I could have the occasional glass It really cheered me up . I also know what you mean about it being a mission to get through it. I felt like that first time out and I was getting my bravery back yesterday but it stalled a bit today !

Will let you know how it goes. Take care . Hugs back

XXX

[Hidden]

I had Carbo and taxol first time around second time had carbo and gem. On second my hair did thin but it was towards the end of treatment so got a hairpiece I wore for about two months. I think it is good you are starting treatment soon. I have always met my gynae nurse on a one to one so perhaps she was talking about reactions in general. You know you dont get all the side effects they say on the sheet, it is to forewarn you but it doesnt mean you will get them all. I would think it will be okay to have one glass of vino at the wedding and just keep topping up with seven up. I found if I went away for a few days if we had wine at a meal, I was only ready for sleep. Good idea is to stay where the wedding is so you can slip off for a rest if you need to or go to bed early. My sister did that at my sons wedding and that was okay. She has osteoporosis and felt it tired. Make sure you get the photos you want before the meal because after everyone is doing their own thing. Good luck on Monday

[IrishMollyO in reply to Hidden]

Hi Suzuki

Thank for your usual helpful detailed reply which is full of your very wise tips. I will be booked into a hotel in west Cork 3 Days after my second chemo which is on a Monday . The wedding is Fri so will arrive the day before. I did tell them and they said I should probably be ok . I hope I am not biting off more than I can chew ! My hair should still be ok . As for the wine I will run it by them again and it's just for the wedding . It just said it on the chemo video we were shown so I forgot to ask the nurse. Take care

XXX

[vipervictoria]

To try to answer: if you tolerated carbo five years ago and haven't had chemo since you should be fine. Some women do have allergic reactions, but depending on the extent of the reaction treatment can be sometimes continued with strong antihistamines, slowing the infusion rate, etc.. I know of women who've had more than 20 cycles of carboplatin without problems. The second question: my oncologist is a leading expert on carboplatin, and this is the method he uses. Typically the first infusion is AUC 5, then 6, then 7, increasing every second cycle. He has explained to me at length that in his experience - 40 years plus - this is by far the most effective way of using carbo. As for hair loss, it shouldn't be too bad. Use a very mild shampoo - baby shampoo - and a soft brush.

Finally, the alcohol embargo: my treatment spanned Christmas, so I did have a glass of wine. Nobody told me not to. But it's obviously best to follow your oncologist's advice.

Hope this helps a little. Best, Vx

[IrishMollyO]

Hi V

Second time trying to reply. Someone rang and I somehow deleted my it !

I just want to say thank you for your very reassuring reply. It would appear that once more I have doubted my oncologist unfairly maybe . Perhaps the fact that he rarely sees his patients has something to do with it although he has a good reputation . I am happy to drop the taxol and I was helped very much in my decision by the women here . It was very interesting to see your oncologists belief in his methods of treating with a Carbo and of course his success. That has really cheered me up.

As for the hair it is bottom of my list of worries although I do like to keep up appearances . As for the glass of wine it is only for a wedding in Sep . I will check again on Mon. Take care

XXX

[Yoshbosh]

No alcohol?! I've been told (on several occasions) that the odd glass or two is absolutely fine. I'm not a big drinker, but I do like a glass of wine. I don't drink for around a week after chemo, but will have a couple of glasses of wine in the two 'good' weeks in between treatment. That's just me though, and I'm obviously not advocating that you drink against medical advice! Maybe ask again to clarify?

[IrishMollyO in reply to Yoshbosh]

Hi there

I was just going by a video we were shown where it said " alcohol not advised " . It wasn't discussed and I know last time I was on chemo 5 years ago I was told a glass was fine . I just didn't think to ask. It wasn't my top question ! However later i wondered if I would be ok to have a glass at a wedding in Sep. However with all the other things I was told I would love it to be my main worry ! If you know what I mean .,When your head is full of worries about chemo drugs, temperatures , blood tests etc how you long to worry about something ordinary like whether you should have a drink .

You are so good to reply and I hope you are doing well. I will raise a glass to you when I have go the Ok . Take care

XXX

[Di16]

I had Carboplatin only in 2013-14, & didn't lose any hair. I had been told I wouldn't lose my hair, but when I had weekly Taxol, I was told that normally causes hair loss. Di

[IrishMollyO in reply to Di16]

Thank you so much Di

The taxol definitely causes hair loss and it happened on my first treatment. I didn't mind as I was prepared for it. I have been told the Carbo could make my hair thinner which I find more stressful for some reason. Anyway I told my hairdresser today and she has cut it so it will be manageable . Being vain keeps me sane ! That actually rhymes ! I really appreciate you getting back to me. Take care

XXzx