Carboplatin only: Hi all! Since my neuropathy has... - My Ovacome

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Carboplatin only

alnovca profile image
18 Replies

Hi all! Since my neuropathy has been so bad for the past week, at treatment today, I received Carbo only. They did not give me Taxol. So I'm hoping that will help with the neuropathy. Is anyone else just on Carbo weekly? How did you do? Did you ever get start back on taxol further along in treatment? Today was the 1st dose of my 5th treatment. So I go the next 2 Wednesday's & I'm hoping for no more delays. Then I will have a week break & go for 3 weeks in a row for my 6th treatment. Then I think they are going to schedule another CT scan. Thank you all for your encouragement & being a source of wisdom & strength! Xxx

Andrea

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18 Replies
Yoshbosh profile image
Yoshbosh

Hi Andrea,

I had a week of carbo only after an allergic reaction to taxol. I did really well that week and my CA125 dropped more than when I had taxol in the mix! I believe carbo is *the* drug for OC, and taxol is a top up (although they work in different ways). I was swapped to a different drug (docetaxel) and have had that alongside carbo ever since, without any problems.

Yoshi x

jmackmom profile image
jmackmom in reply to Yoshbosh

I believe docetaxol is just another Taxol drug

Yoshbosh profile image
Yoshbosh in reply to jmackmom

Yes, It's the same family, but not the same as paclitaxel.

francescahannah profile image
francescahannah

Hi Andrea,

I've had carboplatin alone in a3 weekly cycle when it worked well but never weekly.

I've also had weekly taxol twice now and have just finished 18 weeks of it but this time it did give me quite bad neuropathy so they reduced the dose which meant the neuropathy didn't get worse but not got better yet. It has brought ca125 down a lot but still got tumours and it's palliative now.

I've had it for 12 years so done pretty well so far and every day feels like a bonus.

Good luck with your treatment

Francesca x

SusanAM profile image
SusanAM

Hi Andrea

I got neuropathy with carbo/taxol on a 3 weekly basis. Had taxol reduced and put on cymbalta and got floppy feet. No taxol for next dose, lots of neurological tests and a chemo break to have surgery. Floppy feet fixed with physio. After surgery I went back on carbo/taxol (reduced dose) for 3 times with no worsening of neuropathy. Numbness getting slowly bether since done with chemo 4 months ago. Am still on Avastin. Taking B6 and cymbalta to help with healing.

Susan

49877894 profile image
49877894

Hi, Andrea. I too have been doing carboplatin only. I do it weekly. Today was number 7. I have 4 more to go. I haven't had any nausea and still have my hair, but it has thinned. I get bad cramps in different places, some headaches. My Dr wanted me to do the taxol with it but I refused. I had heard so many things about the negative side effects, that I felt it wasn't worth it. My CA 125 has come down quite a bit. It's down to 64! But my white blood cells are a mess and I'm getting shots for the now. I'm glad that I only did the carbo but won't really know if it did the trick until 4 more weeks when I get my CT scan. I plan to take 2 months off after I have completed my series. I will then try to do some detoxing and build my immune system back up from the effects of the chemo. After that, I will make a decision as to how to proceed next. Let's compare notes!

Blessings sent your way,

Joyce

anniecrawford profile image
anniecrawford

Hi Andrea,

I had 6 treatments of Carbo only every 4 weeks. I done extremely well and only had about three days off work. I did have to have a blood transfusion before I had my fifth treatment as my bloods were so low, but they were very low from the word go anyway. I was really lucky with the side effects too!! I had no breaks in the treatment either, don't know if that was because I had planned to go on holiday with my sister 2 1/2 weeks after my last one or because I am very determined and stubborn and just wanted the treatment done and dusted!!!xxx

5gems profile image
5gems

Hi. I just started weekly carbo. Have only had 2sessions but apart from feeling a bit nauseous and tired on the 2 nd and 3rd days have been okay so far. It is early days though. I am to have it for 18 weeks all going well. My pain seems to have abated a bit though but that's maybe the steroids I get for a few days. We are all so different aren't ? Good luck with . X

jmackmom profile image
jmackmom

I am on single agent Carboplatin. Tuesday I finished my last treatment. I have had few side effects and my CA125 is at 8. I had the beginnings of neuropathy and I was told by a friend to take powdered L-Glutamine supplement. This only works if you take it during chemo when the neuropathy is just starting. The prescribed dose is for three dissolved tablespoons a day but of course I asked my oncologist at Memorial Slian Kettering and she said to take it once a day. It is working. It also helps with give stomach issues

I don't know which country you live in but in the US oncologists get paid more from Big Pharma depending upon which chemo drug is administered. Taxol pays a lot more than Carboplatin and is far more toxic. Carboplatin treatment is an hour and Taxol an additional four or five hours I get carbo every 21 days

I also don't know what stage you have been diagnosed but there are studies that say that single agent Carboplarin for first line chemo is just as effective as the carbo//taxol combo with many fewer side effects. The original study was published in the Lancet in 2002. Since that was 14 years ago I research for others. I'm 2005 there was a UK study that reiterated the findings and mentioned the fact that oncologists in the US make more money administering some drugs rather or in combo with others, like Taxol. In 2009 there was a study in Cairo with the same result. In fact for my case of stage 1A with high grade 3 aggressive cells, those cells were suseptible to the platinum agent in Carbo but the Taxol was not effective, yet they suggested it anyway. I cited the studies which the oncologist knew about. She said they were very good studies. I insisted and hence the Single Agent Carboplatin. I have all my hair and I never looked sick. In fact my 93 year old mother never had to know we are done and I am waiting for my scan and we are monitoring my bloods to make sure the come back on their own

LesleyGreengran profile image
LesleyGreengran

I had carboplatin only and it was working until I got allergic to it so on caelyx now. Good luck.

in reply to LesleyGreengran

Hi lesley

Yesterday I was given the news that my cancer has come back into my peritoneum and I'll be given Carboplatin and then Caelyx. How are you finding the caelyx - do you have any side effects?

Juliet

LesleyGreengran profile image
LesleyGreengran in reply to

Hi. I've had sore hands, the dreaded hand foot syndrome, but that's bearable (for now at least). I poo frequently though the doc thinks that may be the tumour pressing on my bowel. That's the worst cos I have to think about where the nearest loo is wherever I go ! Also my mouth got very sore but that doesn't last long. It's all bearable. Not much nausea. Good luck.

LesleyGreengran profile image
LesleyGreengran in reply to LesleyGreengran

Forgot, sweat rash under boobs !

in reply to LesleyGreengran

Thanks! Sound a lot better than Carbo/taxol I had last year!

Angel-teal13 profile image
Angel-teal13

Hi Andrea,

I had carbo/taxol every 3 weeks for 6 cycles and the neuropathy started getting really bad by the 4 th cycle so they reduced the taxol by 25%,so I was given a 75% of the original dose from then until the end. The neuropathy improved and did not get worse. Took months for it all to return to normal afterwards. I have 2 thoughts on this -firstly with my type-clear cell, the taxol element is the most important as the tumours can be a bit or even very restistant to platinum drugs like carboplatin . Sometimes the tumours respond well to carbo at first but as time goes on ,several treatments later, they can become more resistant.

Secondly, here in the UK where the NHS is state funded ,the standard first choice of treatment is carbo/taxol.(unless you have a bad teaction when alternatives are given ). Cost is not so relevant . Taxol would not be given if it was not deemed to be useful in many cases because of the cost to the NHS .Lastly, there is a lot of uncertainty over which tumours respond to what because OC is very complex and each case can respond differently.Other than stage the type of cells in the tumour is an important factor. Giving carbo / taxol covers all bases . In the Uk they eould not give taxol just because it costs more.

Hope that helps. The taxol might be restarted at a lower dose? Certainly for my case, I really needed taxol and even reducing the dose a bit worried me ie was I getting enough to zap any rogue cells. However they saidthat the bad neuropathy indicates that it is more than enough in dosage to do the job. It strikes me that each case/ tumour is very individual and a good consultant is the best person to advise you as he knows exactly what YOU have got.

Hope your neuropathy improves.

A-T 13 ×

So sorry you got bad neuropathy but maybe soak your feet in a basin of epsom salts and add lavender you need to do it for 20mins and it does help. Other than that wear anti stress shoes which are comfy. Wishing you all the best

alnovca profile image
alnovca

WOW!! Thank you all for the great replies and insight! This is so helpful. I can tell the neuropathy is getting a little better each day and I have slept better the last 2 nights. I am in the U.S. so I like to hear the perspective from the UK. Thank you all again!! Blessings to you!

Bonnie11 profile image
Bonnie11

Hi i have stage 1c2 endometroid ovca and i am on my 4th carboplatin and so far managing side effects very well. I had one dose of taxol and had a severe liver reaction...and lost all my hair. It took 2 months for my body to recover Anyway I have no regrets not getting any more taxol ... carboplatin has been the cornerstone of treatment for ovca since the 80's when it was first introduced and I have full confidence in it. Incidently my hair has also grown back and had not been affected by carbo... If you need advice on managing side effects let me know .Forewarned is forearmed!

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