Will the carboplatin be helpful to me - My Ovacome

My Ovacome

15,700 members18,232 posts

Will the carboplatin be helpful to me

Rexrescue profile image

I have had the full oophorectomy and have been offered three different choices, no chemo, carboplatin or carboplatin with another chemo drug. I chose the one carboplatin. I had stage 1a clear cell ovarian cancer which it is hoped will have been wholly removed and another cancer of the womb which the gyny consultant did not even mention and I only found out from they oncologist and he completely discounted it. As I have read that chemo does not affect clear cell cancer I wondered if anyone had any thoughts as I seem to be wasting my time.

13 Replies

Hello, clear cell is a slightly rare beast as I understand it ( I’m bog standard hgs). It would really be worth ringing the Ovacome helpline because I think there have recently been studies about clear cell that might help you decide what to do. Good luck xx

Hi Rexrescue. It's a personal choice and I know of people who have gone in both directions.

I'm 1c2 Mucinous and had a similar decision to make. We chose chemo as I wanted to look my children in the eye, if ever I needed to, and tell them I did everything. For me it was about reducing risk of reoccurrence from 15% to 5-10%. I'm 2 weeks into round one (carbo/Taxol). I had 4-5 bad days but feel much better now. My hair has started thinning which I'm taking as proof it's doing its job

Also worth noting that, in cases of reoccurrence and clinical trials, many trials won't accept people if they've not had chemo previously.

It's not an easy decision and wishing you the best whichever way you choose. There's no right or wrong answer... Only the one right for you.

Hello Rexrescue

I too was diagnosed with clear cell ovarian cancer but at stage 2a. I also had a cyst which was endometriod cancer. I opted to have carboplatin and palictaxol.

I read almost every scientific paper/ research paper regarding clear cell available on the internet in english. I am a scientist by profession.

Some of the research indicated it didnt really made much of a difference if you went with carboplatin on its own or in conjunction with taxol. Also the research looked at having 3 sessions of chemo versus 6 sessions, also shown not to have much difference in early stage clear cell. In the end i made the decision to have both as i wanted to have the best possible chance of survival.

After having 6 chemo, i am left with neuropathy in my hands and a little in my feet. Taxol can cause neuropathy and also causes hair loss.

Chemo with both agents was hard going towards the last few sessions. My white blood cells were very depleted and despite taking injections to stimulate white cell production. My chemo was delayed several times.

Many people on this site have had carboplatin as a single agent and said it was much easier than both. Some of the advantages are than you do not loose your hair, still have energy and less chance of neuropathy.

In the end it is your decision and you have to do what is best for yourself. I wish you all the best.

Regards

Nus x

Hi, I am/was clear cell and opted to have the Carboplatin/Paclitaxel combo. I really didn’t want to lose my hair but knew that if it had come back in a year’s time, I’d be wondering if it was because I didn’t have the double whammy. Unhelpfully, only you can decide though! I also had external radiotherapy as I had a separate womb cancer too and that was part of the belt and braces approach to hopefully keeping the beast at bay forever.

Clear cell often doesn’t respond to platinum based chemo but that’s the key…often not never. X

Hi Rexrescue . I have clear cell cervical cancer . I was given the same options as you . I chose just the carboplatin.

My oncologist said that it’s a 50/50 chance of it working so why put yourself threw it unless it’s definitely going to work. but I am at stage 4 . Can’t cure me but I’m not done either. .They can also change your treatment if it isn’t working for you.

I had 5 carbo as it did it’s job after just 3 months. Unfortunately for me it came back quickly but only a small amount. but don’t forget I’m at stage 4.

My understanding is clear cell if caught at an early stage responds well to treatment.

Since my cancer came back I joined a trial for clear cell cancer and it’s working very well for me so there is hope for the future.

I do not regret my choice of chemo but It really is up to you . If you have questions unanswered please contact your oncology team.

Good luck x

Hello !I agree with all the other posts , it’s something you have to weigh up for yourself using the best advice you’ve been given . However, this is what happened to me … . I am clear cell OC stage 1 c and have had no recurrence for 8 years come July . As has been said , clear cell does not always respond as well to chemo , however , I know that mine did because of the levels after the first two cycles of chemo , in particular. They showed that I was responding well . I could be wrong , but I had a strong feeling that the paclitaxel is particularly good for clear cell . That’s just from my memory of what was said at the time . Perhaps that’s something to ask your Consultant about .

Anyway , for me it was a no brainier. If there was a chance it would improve the outcome , then I would do it and then I would know that I had done everything possible to keep it at bay and have therefore have no regrets. My Consultant said that it does overall ( stats from all clear cell patients) improve the chances of it not recurring by a percentage . I think it raised it by about 15 % . Again , these are questions you could raise and get up to date answers for , given that outcomes may well have improved a little in almost a decade since I had treatment . I hope that helps . As is often said, we are all individuals and you could be fortunate and it could work very well for you. Wishing you the best whatever you decide is best for you . There are people here with clear cell and we’ ve also had these dilemmas in the past . Please ask if you have anything you want to know and I ‘ ll do my best to answer from my experience of it . You aren’t alone ! I remember feeling very alone and sad that I had a rarer type , wishing I had had the usual common type ! But as you can see I have been very fortunate . Reading and posting on this site was very comforting and reassuring for me . It helped me a great deal .

All the best,

Angel- teal x

Hello Rexrescue,

I am sorry that you are in this situation and in this decision making dilemma. It seems that most of us ladies with the less common forms of ovarian cancer end up faced with making a choice like this. I also have clear cell but was 1C3 rather than 1A like yourself. On a very positive note my understanding is that the prognosis for Stage 1a Clear Cell is very good indeed. I believe the Ovacome helpline can be very helpful at providing all sorts of information which could be useful to you. It is my understanding that there are studies around whether very early stages of ovarian cancer can avoid chemotherapy so there should be some information available for you.

I was in a similar position with regard to being given options to choose from. It is overwhelming particularly without figures to guide the decision. I decided to take chemotherapy and had Carboplatin and Paclitaxel. I was a little later in staging than yourself, knew within myself that I was more content with the decision to have chemo and I was able to see from this Forum that other people with my Stage and Type of Cancer were having Chemo. The Chemo could also be ended at any number of sessions if I decided to stop.

Unfortunately there does not seem to be a definite correct answer yet to the chemo question and as individuals we will likely never know for sure. You sound like a very logical person who is making a very considered decision and that decision will be the right one for you!

Sending you good wishes

I was diagnosed clear cell 1C3 in 2014, my surgeon recommended chemo as a ‘mopping up’ exercise. My thoughts at that time, and still are, was to throw everything available at the cancer and to try to ensure a possible future for myself. I had the carboplatin /paclitaxol combination of chemo. I have neuropathy from the chemo but that is offset by the knowledge I did everything I could to survive. 8 years on I’m fine, no reoccurrence and obviously happy with the decision I made.

We’ve had some ladies here and I’ve known some personally who’ve decided not to have the chemo and then go on to regret that decision when they recur, having said that, some who choose not to have chemo go on to have a long happy healthy life so it’s an unknown lottery. It’s a very personal decision only you can make but one that needs to be made armed with all the knowledge to hand.

I don’t think you’re wasting your time, I think you’re taking an active part in your health. The chemo isn’t a barrel of laughs but carbo is certainly doable.

You got this lovely, whatever you decide, and we’re all here to help you ❤️Xx Jane

I am Clear Cell 1C3. I was meant to have Carboplatin only, however it was cancelled due to the fact I had quite a large open wound and my Oncologist and myself both thought the risks far outweighed the benefits. I’m now a year out, my wound has healed and so far so good, my last scan showed no evidence of disease. I’m due my next set of results on 24th, so keeping my fingers crossed. I would have had the chemo if I’d been ok, but it may not have made any difference. It’s a very difficult choice. I only know that I’m pleased my wound has now healed and should anything show on the scan at least now I could have some treatment. It took 10 months, and I have to say I did worry more about a recurrence while it was healing.

I had stage Ic mixed clear cell and endometrioid ovarian cancer, with a side of endometrial (womb) cancer that wasn't suspected until pathology report came back. My surgeon was not "dismissive" but he did say that the womb cancer would have been removed by the surgery and not to worry about it. I wasn't given the option of which chemo to have, as I have a bad allergy history, so my oncologist decided not to give me Taxol. I'm still here, 16 years later, no recurrence. As the other ladies say, it has to be your decision, but one question to ask your oncologist is "what would you do if it were you (or your mum or your sister or your wife) in this position". They are usually happy to answer. Wishing you the best!

See the post from the woman w clear cell. She is on the ATARI trial whuch looks good. Good luck from paris

Hi there. You have had some excellent responses already but I thought would just share my experience. I was diagnosed over twenty years ago with stage 1a serous ovarian cancer and I was given the choice of having Carboplatin alone or going on a trial combining Carboplatin and Taxol. I could of course decided not to have any chemotherapy but the question I had to answer was what if I didn’t have any treatment and it recurred how would I feel? Of course there are no guarantees but I personally would have found it very hard if I had chosen to have no chemo. So I chose to just have Carboplatin. In my situation I felt that as the outlook was very good I didn’t want to be dealing with any long term side effects which I might have to deal with as a result of having two drugs rather than just one. However it is very diicult to make a decision and only one you can make. As someone has already mentioned ask the consultant how much of a difference in your particular case would each option make. All the very best

Hi everyone, Thank you all for taking time to reply to my question, it has been so interesting reading them all. I signed up immediately to the carboplatin chemo as I felt I needed some sort of back up but felt I could not deal with the side effects of the second drug being 75 in a couple of weeks. I had read the info on clear cell ovarian cancer which was quite depressing and on pushing the oncology consultant, he was unable give any advice or answers to the questions. It was only afterwards I began to wonder about the womb cancer (at first I was so thankful for it as it had showed up the cancer symptoms) but it had been a throwaway bit of conversation with no details.

I have been assigned 4 oncology nurses who I have been trying to get in touch with all week to try and find out more. I have been promised they will give me a call next week.

After reading your replies I feel I have made the right decision for me and my family are in agreement, I have now a date to start the carboplatin. Thank you all so much for getting touch.

You may also like...