Disease progression and oxygen

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Well it had to happen. 16 years of living with mesothelioma.  The last couple of months its got worse.  Saw the oncologist today.  My breathing is worse, hard to sleep lying down now.  They’re going to try and organise oxygen, it seems the gp does this.  Good luck with that!!!!  How long do others wait????  More pain, at least the oramorph helps.   Not finished yet as he signed me up to some more chemo.  He was right, after so long you get complacent.  I’ve lurked round this site for so long and just added a few comments.  Now its me Unamused  

  • oh  roni2008

    Yes your name has been about for quiet a while now, in a good way, and hopefully will carry on.

    Hopefully once they get the oxyen sorted, it is how long is a piece of string, though hopefully, you need it and will be sorted sooner, rather than later.

    Hope others come a long, with a better answer, as i have had no dealings, with this as yet.

    Keep us updated.


  • Hi Roni

    It has to be positive news, surely, if they are planning some more chemo for you? They haven't given up on you! Hopefully having oxygen available will help with your breathing, so you will feel better generally, with more oxygen pumping round your body. Fingers crossed you don't have to wait for too long for this to be put in place

    Stop lurking and keep posting!


  • Thanks Ellie and Candysmum.  Its nice to know others are there.  Exciting morning so far.  My husband called an ambulance because my oxygen levels were really bad - 75 at one point!!!!  Lovely people, sat with us for about an hour speaking to the hospice and giving advice.  Decided not to go to hospital, sit quietly here over the weekend, keep up oramorph intake and chase oxygen on monday.

    hope everyone else is ok over the weekend.

  • Oh Roni, you are having a difficult time! The ambulance people sound lovely and caring, and reassuring. I hope you have a peaceful, uneventful weekend resting at home, and the oxygen is supplied for you quickly next week.

    I'm sure you'll feel better being at home in your own surroundings, than being in hospital. Sending you a 'virtual' hug!

  • Hi Roni I was diagnosed with Pleural Mesthelioma last Oct. I have read your story to read that you have had lots of different treaatments. I was given 4 cycles of carboplatin and pemetrexed. Then up to now i wll have had 10 of just pemetrexed. It's only a ten minute infusion but the effects are still draining. My oncologist told me last Friday that I was stable but as long as I can cope he would like me to carry on with my first line treatment.

    You will get some relief when they are able to supply you with the oxygen you need. Let us know how you get on.

    Judy xx

  • Hang in there roni2008 while there offering treatment there is still hope xx


  • Thanks everyone.  I’m sitting in hospital now.  They’re treating a chest infection and home oxygen is being organised.  Got to get a bit fitter before i tackle some more chemo.  No, not permextred. That would too taxing!!!!!  Still see how things go.  I’m amusing my family by adding photos of hospital lunches to the family app.  Unfortunately, or some might say fortunately, my appetite isn’t too good.  However i did manage the chocolate muffin my husband brought in.

  • Oh roni sorry to hear your in hospital, the food is awful so stick to the chocolate muffins. I hope your home soon and the oxygen is waiting there for you. Sending hugs xx


  • Morning Roni Sorry you're in hospital but you are being looked after and have chocolate muffins to boost Grin

    So is pemetrexed taxing! that will explain why it drains me even though it's only a 10 min fusion every 3 weeks.

    Take care and hope you are home soon with the oxygen there to help you.

    Judy xx

  • Reminds me of my stay in hospital...the kitchen were informed that I don't eat meat....so they sent meat meals for 3 days before they finally got the message! Ugh! And the veggie meals they eventually sent must have been lurking at the bottom of the freezer for years!!