Third time lucky?

Having had Ovarian Cancer diagnosed May 2013 I am still here after treatment with Carboplatin and Paclitxel with a large debulking operation in October. Spleen had to be removed and am now on daily penicillin to help my immune system. Well on the way I have had drainage for ascites in my abdomen, a Pulmonary Embolism - treated with daily injections of Clexane, Pleural Effusion which keeps coming back after having it drained several time once was a bit scary when my lung collapsed! Oh and Neutropenia Sepsis - now that was also scary! When the cancer was obviosly still there in January the oncologist started me on Caelyx which for me had few side effects and my hair grew back. Now we are into autumn the cancer is still active causing more pleural effusion so I am now on Paclitaxel alone weekly for 18 weeks. Feeling a bit fed up but still hoping that this time it will give me a bit of time off in the spring. Fingers crossed everyone.

Best wishes Pat

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  • Dear Pat

    You've had quite a tough time so no wonder you feel a bit fed up. I think many of us would be a lot more than a bit fed up with all that. I really hope this weekly taxol gives you some time off from treatment. You've demonstrated tremendous stoicism through all these different treatments. I'm certainly going to keep my fingers crossed for you and hope you get the break you richly deserve.

    Have you got some treats lined up before the Spring to help you through the winter months and the weekly Taxol?

    Sending lots of love xx Annie

  • Thanks Annie, Treats seem to revolve around food these days I am avoiding crowds ie theatres and cinemas and have given up choir which I miss - but I want to avoid all the bugs flying around at this time of year. I've even given up hugs and kisses from friends although I might succumb in special cases!

    Onwards!

    Love and best wishes Pat

  • I return to a good friend's advice, Ron Eccles. He runs the Common Cold Centre in Cardiff University. He told us there were enough germs on a £1 coin to infect every person in India with the Common cold. He said to avoid picking up infections wash your hands in soap and water 10 times a day, and never rub your inner eye with your fingers because that's where most germs enter the body and not via the nostrils. Apparently the entrance to the nasolacrimal ducts are at the inner eye, and wiping them with fingers can block them due to the natural grease of the skin on the fingers, combined with germs picked up from germ hot-spots causes the problem.

    I didn't avoid crowds, theatre or cinemas during chemo, but I do have a spleen so perhaps it's different for you and your doctors advise you differently. I think I'd try seeing a film out of prime time or even treat myself to a box in the theatre if I was worried. I love the theatre and cinema and it would be such a hardship to do without those as well as trying to cope with this disease.

    Perhaps make a list of films you'd like to see, order them in and invite a friend round to watch with you. I'd certainly take up that offer.

    Sometimes I can imagine it's almost too much to even think outside the box when you're feeling poorly. I've felt rubbish all day today and have hardly had the energy to stay out of bed. On days like that I think it's a good idea to give in but I'm the worst at taking my own advice!

    Sending love n hugs (germfree 'cos the're virtual ones) . xxx Annie

  • Thanks for the very interesting info. Must be careful when touching money! Thanks for the hugs.

    Love and hugs back - Pat

  • You have been through a lot Pat and I do hope the Paclitaxel will work for you this time. I also had my spleen removed (in November 2011) and take the penicillin each day. About to swallow the first dose now.

    I hope you get the chance to have a break, maybe go on holiday if you feel up to it. It's a good idea to plan treats for the days when you're feeling better.

    Love and best wishes

    Mary xx

  • Thanks for letting me know I'm not the only one. Are you on chemo at the moment? Am I wise avoiding cinema's theatres and generally crowded places?

    Love Pat

  • I'm lucky enough not to have needed any treatment since finishing chemo at the beginning of 2012. I did tend to avoid going to places like that, I think it's wise to err on the side of caution. xx

  • Hello Pat

    You have been through it. I was diagnosed just about the same time as you, April 2013. I didn't have surgery until Jan this year. Like you I have been on chemo pretty much since diagnosis. However, most of the time feeling very well. Third line Topotecan checked the disease at my interim scan.

    How is weekly paclitaxel? This is another regime I need to consider when disease progresses again. I really don't want to lose my hair again!

    Really hoping you get good news soonest! Maureen

  • Thanks Maureen, it is interesting the routes taken by the oncologists. We are all so different and react in different ways. The weekly paclitaxel is so far - so good. It does limit you rather, but I have found that I feel safe being at home and not too far from the hospital. Hair not dropped out YET but I have only had 2 sessions, 16 more to go! Will keep you updated.

    Pat

  • You are so right Pat. My oncologist seemed reluctant to offer weekly paclitaxel after she had referred me to the Marsden to check out trials. Even though the oncologist at Marsden said that I needed to seriously consider remaining IV Chemo option before considering joining the trial we spoke about. I need to explore that with my oncologist further, when disease progresses again. Please keep us posted. Maureen x

  • Hi Pat really hope you get to have a break and remission from treatment soon - it must be exhausting. And no more neutropenia episodes! Wishing you all the very best - keep your chin up

    Fiona

    Xx

  • Thanks Fiona. Thinking good thoughts is the ONLY way forward.

    Pat

  • It is hard to keep having treatment and waiting for to be called into treatment room, consultant or for scan and bloods. I empathise with you. I hope you get into remission and get a break from it all. Do try and plan some treats for when you have your good days. As regards hygiene, I use hand gel and dettol spray in the house. I have taken breaks away and just watch the tap water, only go for bottled. As regards the coins and notes, there is nothing really you can do. I work in finance and handle money but if I feel that the person giving me any type of money is untidy, I go wash my hands and use the gel at work. Another thing is when you are out, dont put your hands on escalator or stairs railings or if you have to, have your gel or wipes and use when you get off. You prob have to be extra careful without your spleen. Wishing you well

  • Wow Pat, you've had a tough time of it. Hope you get some 'free' time in the Spring and really hope we have a mild, sunny Spring to enjoy.

    Best wishes

    Annette xxx

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