maintenance chemo

I was diagnosed in June 2012, stage 3c, unfortunately the cancer had spread to the uterus, tubes and the bowel, it was even in the appendix. I had a full hysterectomy plus one third of the large bowel was removed plus about 25 cm of the snall intestine and I had an ileostomy bag. This was reversed eight months later.

I had eight sessions of carboplatin and taxil. The cancer recurred last July , I had scattered nodules throughout the abdominal area, on the surface of the liver and I had fluid at the base of my right lung, several lymph nodes were involved including mammary nodes and two near my clavicle.

I have now had six months of chemo ( carboplatin and caelyx) and seven months of caelyx.

I am due for another pet scan on the 25th August so will find out whether there has been any further reduction of the cancers ( after the six months of chemo there was a reduction in some of the tumours

and the fluid I had in the right lung had gone) It looks as though I am going to have to continue with the maintenance chemo, the oncologist has said he has had patients living two and three years on maintenance chemo.

Earlier this year I had severe headaches a few days after having the caelyx with pain in the sinuses, aching eyes and teeth but thankfully that has lessened, sometimes my voice is affected and also a 'drippy' nose plus sore eyes every morning. Thankfully not too much trouble with nausea and the mouth ulcers haven't been so bad the last couple of months.

Anyone else on maintenance chemo ?

7 Replies

  • Dear Shirley

    I've been on maintenance chemo on and off for the last 4 1/2 years. I'm currently on my third line and am about to join a clinical trial for PARP inhibitors.

    Everyone's different with this disease but it is possible to live a very full and happy life for years despite the inconvenience of chemo and hospital visits. There are women here on this forum who have had a lot more treatment than me and are doing amazingly well.

    I hope your maintenance treatment keeps you well. xxxx love Annie

  • Thanks Annie,

    Your answer gives me a bit more hope for the future.

    I'm just happy to still be here and able to see my family and friends.

    Still have a lot of trouble with fatigue, sometimes think I am okay to do

    something but very quickly get very tired.

    Thanks once again. Best wishes Shirley.

  • Hi Shirley. Are you still on the Caelyx then and saying your onc intends you to stay on it without break whilst it is working? I haven't heard of it being used as maintenance in the UK, only as a standard 6 cycles alone or with Carboplatin. If others are on this hopefully they will chip in. Annie's definition of maintenance chemo is different to this I think as she is just saying she's had a few lines of standard 6 cycle chemo (plus non chemo maintenance treatment with Avastin) with breaks in between. If you are in the UK do you mind me asking where you are being treated?

    The good news is that although you struggled at first you seem to have the side effects much more under control. I really hope your scan shows continued desease reduction and you can remain on maintenance without problems for a long time!

    Take care

    Love M.B x

  • Thanks mummybear, yes I am still on caelyx as a maintenance chemo.

    I am not in England, I am in W. Australia. Will write again after my pet scan results.

    I know of some people who have been put on Avastin after recurrence and seem to be doing well.

    Best wishes Shirley.

  • Ah that explains it.

    Interesting anyway and I hope it continues to work for you. I'm on Avastin maintenance and so far so good but that's not chemo and for me so far the side effects haven't been too bad.

    Good luck with the scan xxx

  • Wow I hadn't realised you could keep having chemo. Is it right in the UK it's usually just six cycles and then a break? It's so interesting hearing what goes on elsewhere.

    You have a great attitude Shirley. Live for the day - just as you're doing! xxx love Annie

  • Hi Annie,

    Although the 6 months on carboplatin and caelyx did get rid of some cancers and reduced others the 7 months of being on a maintenance dose of caelyx did NOT work. I have now started a treatment of Gemcitabine and cisplatin, half one week and half the next, both drugs each time then the next week off so treatment 2 weeks out of three. Cancers that were inactive had become active again plus I have some new ones.

    Thanks for your reply. Best wishes and good luck. Shirley.

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