Pick yourself up, dust yourself down and start all over again

Provided your body can cope!!!! My onc had nothing further to offer 6 weeks ago, (apart from the abdominal drain last Friday!) so yesterday I was up to the royal marsden, feeling pretty grotty, as it was discovered late wed that I had fluid in my right lung. Well, lots of different ideas, but first remove the fluid...ok...Sunday afternoon ready for Monday morning. Anyone been desensitised for carboplatin. - that's the plan as soon as the fluid has been drained. What does anyone else think, and what experiences have you had with this?

Thanks for any advice.

Love n hugs

14 Replies

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  • I haven't had it done, but I know several women who have. It is a comparatively easy if rather lengthy procedure. It shouldn't cause you any more discomfort than boredom. Carboplatin is a very effective treatment and I think it's worth trying desensitisation. Please let me knowwhat you decide. I'm thinking of you and wishing you good luck,

  • Hi Greybadger,

    Sorry I can't be of any help to you - but sending you a big hug (((x)))

    and my best wishes for Sunday. Hope all goes well.

    Angie xx

  • Sounds very interesting. No experience of it. But worth a try

    .I watch your journey with interest being very close behind. One more gemcitabine treatment on tuesday and I will have completed my 6th line treatment. Don't hold up a great deal of hope of a good response tho

    Anyway GOOD LUCKxxxxx

    Love Suex

  • Dear Viv,

    I'm really sorry to hear how poorly you've been - and now this worry with the lung and treatment to desensitise you to platinum. I hadn't heard of this before and will ask next week when I visit my oncologist.

    I meant to post up a report having been to a lecture by eminent oncologist, Professor Hani Gabra, in Imperial College Hospital in Acton. He was talking about his research into finding a way to stop us becoming sensitive to platinum. Apparently it only works effectively the first time because it changes our DNA. He explained that he's discovered a faulty protein present in all Ovarian Cancer. In its healthy state the protein suppresses the development of cancer cells but when it becomes deformed after platinum-based chemotherapy has been administered this essential function no longer works. He told us he was looking for 5 women to take part in the trial in the UK this year, and 20 next year.

    It does seem hope is there for us. Perhaps it's worth asking when you're at the Mars Den to see if you can be part of this trial. It worked in Denmark and is being extended to quite a number of countries. Professor Gabra told us the treatment of cancer will be transformed in the next 5 years.

    I'll get my I-pad out and check up my notes. I'll post something up along with the URL for a video-clip of Gerard Evan who's a research professor at Cambridge who's also looking at single molecules to solve the problem of cancer. More hope there too. Just so you can take a look it's at

    scienceblog.cancerresearchu...

    Alternatively, go to the Cancer Research UK site.

    I do hope you are feeling a bit better. You're a star with your Pick Yourself Up, Dust Yourself Down, and Start all over again.

    Sending my love xxx Annie

  • Hi Annie

    Thank you for posting the link to Gerard Evan. There is a faint whiff of hope in the air at the moment, isn't there? His confidence that cancer will be curable is wondeful.

    Monique x

  • Yes, his assertion that his children aged 21 and 22 will never have to worry about dying from cancer, was very heartening. You might be interested in the notes I took of a lecture by Professor Hani Gabra at Imperial College. I posted them in a blog. Hani Gabra is an Ovarian Cancer specialist and his message seemed to be even more hopeful. xxx

  • Dear Greybadger

    I do empathise and I'm sure the Carboplatin will work wonders for you as it did for me, once when I couldn't hold my body up in 2009 and again in 2010. At one of those later sessions in MDU I had a bad reaction and before I knew it, I was surrounded by the Re-sus Team. My Onc wanted me to complete the course of chemo and appointments were made for overnight stays at the Marsden where they gave me the Carboplatin very slowly and well diluted.This doesn't help you a lot but it sounds as if the Marsden have a plan which I really hope works for you.

    Very best wishes

    Jennifer

  • Hi Viv

    I seem to have been following your story for quite a while now, and I am sorry to hear about these latest set-backs. You are quite right to have the tag line 'pick yourself up.....' You WILL start all over again, even though it's hard right now. I am sure I am right in saying we are all rooting for you. :-)

    Annie's comments seem really interesting and well worth looking into. Maybe you could give Professor Gabra's secretary a ring next week and ask about the trial, with a view to giving it a try if it's suitable for you.

    Anyway I just wanted to say the very best of luck for the next few days, and send you a big hug. I will be thinking of you and sending you lots of wishes and positive vibes

    Love Wendy xx

  • Come on Grey Badger... we can do this,,,, I am poorly too at the moment in bowel obstruction... but thinking about your lungs.... when I had my diagnosis at Xmas 2011 I had a terrible cough and deathly rattle, I had 2 plural effusions which had sucked up the ascites from the abdomen. My oxygen sats were at 90% which was not good..... they did clear with antribiotics, but it too 6 weeks or so and chemo.... i thought the cancer cells would be in the lungs but no they cleared.

    Keep moving and changing podition and bring up what you can x

    Will follow your carboplatin road..... I have had an 8 week remission only, and have started back of carboplatin and gemplatin instead of taxol.... my bowel has not worked for 2 weeks and was blue lighted into hospital. Am home now on a steroid pump and today after 6 sachets of laxido I forced the obstruction through.... yeeehh..... we can do it x

  • Hi

    Just wanted to wish you all the best for today with the lung drainage. I had loads last year and ended up with a pleur x drain fitted. Thankfully now after an op in February to deal with the collapsed lung through so many pleural effusions ,Im ok and free of drains and fluid, thank god. To me that fluid in your lungs is awful.

    Never heard of desensitise! but I am sure you are in the best hands and Carboplatin will work for you again. I have read all your blogs and I always am pleased to see you when you write

    let us know how you get on

    Love and Hugs

    Coco

  • hello Viv

    Nothing to add really except that I am thinking of you. I am sure you are in good hands. I almost had to stay overnight at the RM recently for a drain (that didn't happen in the end) It seemed very comfortable and the food was good - I was sorry in a way when they sent me home!

    Sorry to be thick but are they desensitizing you because you are allergic to carbo at the moment?

    Best foot forward you brave woman.

    Love Sarah

  • Yes Sarah, when they tried giving it to me the second time my head felt like it was going to explode....... Not very pleasant, but this was given slowly after 24 hours of antihistamine and steroids . At the moment I am getting over the chemo, but my stomach and pancreas seem to be inflamed, so still incomefortable, bt better today than yesterday, so perhaps we are getting there.

    Love n hugs

    Viv

  • My intestines are inflamed because of my daily oral chemo dose so I know how it feels- foul!! Do you have heartburn as well? I was really tired last night but it was too uncomfortable to lie down. I am sure that would be classified as torture!

    You are brave going through the chemo process when you have had such a bad reaction in the past. So glad it paid off and the antihistamine and steroids worked.

    Love Sarah

  • I'm a bit late to reply, Greybadger, but just want to send my sympathy with you for all that you're going through and hope you feel better soon.

    Love Solange

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