Normal and Still Effective?: I have just found... - My Ovacome

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Normal and Still Effective?

ricky23 profile image
10 Replies

I have just found out today through a letter my Carboplatin has been reduced by 15% Is this normal? Feel a bit nervous about it. No one told me!!!

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ricky23 profile image
ricky23
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10 Replies
January-2016-UK profile image
January-2016-UK

My Taxol was reduced by 20% for the last two because of peripheral neuropathy but not the Carboplatin. I suggest you phone your CNS and ask her if she can tell you why.

ricky23 profile image
ricky23 in reply to January-2016-UK

I'm guessing as everything I've had it I've had a delay as white and red bloods not right. Think they shouldve told me!! Had it last Tuesday still felt and was sick with the lower dose!!

Annr5h profile image
Annr5h

I think that it can be reduced if you've lost weight too . But I would ask your nurse xx

Caleda4 profile image
Caleda4

Hi there, I think they should have advised you when you saw the Oncologist. I had problems after the 1st lot of chemo Carb/taxal & my Oncologist told ne that they would reduce it by 25% so that the side effects I had would be reduced. I also only had four sessions instead of the suggested 6,but again that all hangs on either what the MDT team consider or the Oncologist.

Love Caledaxx

Friscok12 profile image
Friscok12

Last chemo I had she had to phone to see if she could give me it cause my weight had went up the chemo has been made at my last weight it gets reduced if weight goes up or down xx

yewbarrow profile image
yewbarrow

I had my treatment reduced by 15 per cent for low neutrophils, then again by an unknown amount because of reduced kidney function. I was told the first time, not the second until I questioned something else on treatment day and it cropped up. Like you I feel cross that I was not informed, it's as if we're peripheral to the process. I now have over 3 weeks to wait for next clinic to get a chance to discuss it. On the plus side I suppose they have our best interest at heart but I am going to have to learn to be assertive on this rubbish journey we're on, which will be a first for me.

Wishing you good luck and hope it helps to know that I've also had reductions xx

ricky23 profile image
ricky23 in reply to yewbarrow

Yes it's the not being kept in the loop that annoyed me...as it is about ME!!! My next one is due 22 March but last time I had to wait an extra week due to bloods... and also in October a whole month. Got to say the side effects were worse on the reduction lol !!! Hoping you are keeping as well as you can be....thank you first reassuring me. Very grateful x

Sunfleury-UK profile image
Sunfleury-UK

I had single Carboplatin after surgery and was neutropenic immediately. They delayed, gave me the booster shots and also then had to reduce the dose. I found out when I asked as was concerned that with single Carboplatin, you often receive 20% extra to the amount given when done with Taxol, so it's just taking away the increase. Like all chemo, it's a balance between potential benefit and potential risk.

I would have managed a lot better if I'd been in the loop too, so get where you're coming from! Wishing you hope & strength xxx

IrishMollyO profile image
IrishMollyO

Hi Ricky

After 5 years clear last year I was given Carboplatin only for my recurrence . As I was an ideal candidate for the Carbo/Taxol combination I was angry and remain angry about this . I was just dismissed and told by the CNS that Taxol was too toxic for me despite the the fact that I responded very well first time round with very little neuropathy which cleared up very quickly.

Which brings me to the experience of Carboplatin. The dose was supposed to be increased by 10per cent at each session which I presume was to make up for the lack of Taxol. However my creatinine levels rose and never came down so they continued with the low dose until session six when they stopped altogether and admitted me to hydrate me for two days. Then I was given a CT scan and discharged. I never did get the sixth dose. At my follow up appt just before last Christmas I was told my lymph nodes were now clear and my next appt is week after next.

I'm not sure how helpful my story is Ricky but I think in your case they should give you an explanation. At least even though it was upsetting. I knew why mine was not being increased as planned. I wish you all the best and keep asking questions , and persist until you get an answer . It's your body and your life and they have a duty to keep you informed. The only time you should not be given information is if you specifically ask not to be told anything about your illness . Take care

XXX

Lily-Anne profile image
Lily-Anne

Usually it's due to kidney function. Although my last chemo kidney function was really bad and they pressed on. I wouldn't have had it if I'd known. I would call in and ask for more info

LA xx

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