Carboplatin

[Tinkerbell56]

Have any of you lovely ladies had carboplatin 6 months after firstline? I had upper abdo pain which I get occasionally as have gallstones. This resulted in them doing a CA125 5 months after last chemo and Clear CT scan. Now they don't won't to give me anymore carbo which worked well for me first time cleared my very bad ascites in a few weeks and made me feel well throughout rest of treatment. My point is if I had waited for gallstone episode to ease off which it does within 6 hours they would not have tested my CA125 and I would have exceeded the 6 months criteria they use to define platinum resistance and technically they would now let me have carbo & gem which gives me a better chance than single agent chemo which they say is only 20 percent chance it will give me a result.

My rationale is I am an individual and they cannot possibly know for sure the bog standard response applies across the board and surely I am worth another course of carbo which they can stop if my CA125 continues to rise and then conclude I am non responsive and switch me to single agent or if applicable a trial. They are far too generic with their one size fits all whilst try and pull the plug on a drug they assume has not worked in my case but would be ticking the box marked chemo sensitive if I had not been proactive about what I know was gallstone pain, also scan at 5 months was clear also

[Lovis]

Hello. I'm speaking from experience here. My Ca125 went up to 1050 after 11 months and I panicked and wanted to get back on chemo asap. Sometimes it's better to spread treatments out as they are more effective the longer the gap between chemos. I'm on 3rd line now and my Ca125 had gone up to 18040 and they still couldn't see anything big on the scan.It's now gone down to 5718 after 2 treatments so hopefully will continue to go down. I know it's hard but please don't panic too much. Lovis xx

[Hidden]

Hi there I had single agent carboplatin for my 1st recurrence and was told I was in remission inOctober last year.No CT scan was done.InFeb my CA125 had gone up from 7 to 12 which started alarm bells ringing because coming up to 1st recurrence the CA125 rose gradually in the 2 years I was in remission.I have just had confirmation that its up to 53 and that the cancer is back and will start a treatment plan this week.Dr said not Carboplatin as it didn't keep me in remission for long Hope all goes well for you love Lynn xxx

[Tinkerbell56 in reply to Hidden]

Hi Lynnrsa, could you let me know what chemo they have suggested please.

Many thanks x

[Hidden in reply to Tinkerbell56]

Hi there sorry for delay replying but ive been waiting for them to call.They are going to give me carboplatin again and another drug called taxotere I don't know what that one is to be honest and I forgot to ask how many rounds I will be having.Keep well love Lynn xxxx

[daisies]

Oh my goodness, what a dilemma you have. Can you talk to your Onc or Liaison Nurse and explain your concerns about 1 drug only. 5 months/6months is so borderline and you mentioned you had gallstone problems as well. Yes I agree, sometimes a generic view is taken of patients....and that is not the case. As you can see by the responses to you the ca125 readings vary so much from 53 to 18000 , which shows the difference.

I had carbo/taxol 3 times, but had a long break of 19/17months in between - again, another difference.

I know from talking to my Onc & listening to others - they do not like to move someone up to another level of treatment too early, as they do not go back, if you know what I mean.

Anyway, hope all goes well - whatever drug is used.

Daisies

[Hidden]

I am sorry you are feeling like this at the moment but if your scan was clear then that is the main thing. It is good to spread out the treatment to give your body a chance to recover from the side effects. You have gallstones into the bargain which cant be very comfortable. I would go talk to you gp and see what they can do if anything about the gall stones and also speak to your oncologist Best wishes

[Wiganw]

Hi

I had carbo taxol for my first line chemo. I unfortunately reacted to taxol on second treatment. I then went on to have carbo alone. My ca125 started to rise in second half of treatment just slightly. I did not have a scan at end of treatment so did not have a baseline to see if worked. I started getting symptoms after about 5 months, I then had ca125 at six months which had raised, then had scan about 6months after finishing first line. I was considered borderline platinum sensitive . However my new oncologist decided to try carbo gem. My ca125 reduced throughout my treatment never back to normal but consistent. I insisted on scan at end of treatment which showed a significant reduction in cancer. With just bits. I have now been 20 months without progression and have not needed any treatment so I think it worked for me. I have made some lifestyle changes as well. Mainly improved diet and reducing stress.

I was very close to being classified as platinum resistant but don't seem to be. I would say I have since found out I am low grade.

Keep fighting on

Sharon x

[Wiganw]

Meant to say as well. If you are not happy you can ask for a second opinion. If you do go to hospital which has specialists in ovarian cancer

[Tinkerbell56]

Hi Sharon

Thank you so much for your reply, I am lying in bed after a good day spent doing nice things with family but was overcome by despair a few minutes ago so logged on and read your post. You have made me feel much more hopeful. I see the consultant this Thursday and I know she is trying to say I am platinum resistant but I have got to 6 months since last chemo although have symptoms cannot eat much and some sickness/sluggish digestion/bowel but am trying to look after myself having some of those high nutrient medical drinks.

Please could I ask which hospital you had your treatment, thanks v much x

[Wiganw]

Hi

I have sent a separate private message

Sharonx