Bloods going north

2 minute read time.

I always knew that the best rucaparib had to offer was a window. I'm grateful it has given me one - but we now have the first signs that the window may be closing.

As I've written before, my consultant tracks the progress of the cancer by measuring a blood protein called CA125 that goes up and down as the cancer waxes and wanes. It is a funny protein that can rise in response to other stresses to do with the menstrual cycle or inflammation or other gynae conditions and it is not always a good marker for the cancer. But in me, it has been. So it's been exciting watching it come down cycle by cycle to 22 at the beginning of April. Normal is below 35. Hurray!

But it is on the rise. My most recent results show that by the end of May, it hit 45. Not a massive number in itself but doubled from two months previously. So there are three scenarios. 1. It's a blip. Neither my consultant nor I believe that as there is nothing to explain a blip. 2. The drug is starting to fail (or the cancer is starting to become resistant) and an increase in dose will knock it on the head. 3. The cancer is becoming resistant and won't respond to a higher dose. We are pinning our hopes on scenario two and I started on a higher dose (600mg twice a day compared to 480) about three weeks ago. Dr K warned me I would feel bad again but it's not been too awful. Some fatigue, nausea and diarrhoea and that disgusting taste in my mouth again but nothing unmanageable. 

I was up at the hospital yesterday and had more bloods and will be having a scan in the next couple of weeks or so and then we will know more. Meanwhile, Dr K is going to request micro satellite testing which will indicate whether I might respond to immunotherapy. It's unlikely, she says, as it is not a typical profile in high grade serous carcinomas but I have not been typical in any other respects so why start now?

It's tempting to sink into the slough of despond and I did do that when I first heard the news about the CA125. But with the help of my ever loving husband, the peeps over at living with incurables and some deep thinking I've come to the conclusion that, whatever happens, I am in a better position now than I was a year ago. I'm still not experiencing any symptoms from the cancer, the kids are a year older, my husband has taken on two new vet practices and is beginning to stabilise the teams so will be able to take his foot off the gas a bit soon and stop working 16 hour days, seven days a week. Maybe. The sun is shining and we have a summer holiday in Greece planned.

My consultant's parting words yesterday after saying she was pretty confident we will see some results from the increased dose were "I'll let you know if it's al going tits up". So one question: how do I wait for the phone not to ring without completely losing my mind? Sometimes I wonder...

Anonymous
  • FormerMember
    FormerMember

    Hi Daloni

    My husband is a hill walker. He is not the fittest of the friends he goes walking/climbing with, but he plods on just the same. The way he copes is he looks for a marker that he can see up ahead, and he walks from where he is to that marker. Then he looks up ahead for another marker, and does the same. Eventually, through these wee chunks of walks, he gets to the top. I think this is a good way to go about things. We can keep ourselves going by doing that in everyday life.

    A lovely holiday is coming up, and you and your family are going to enjoy yourselves. All your buddies here are with you all the time, so much love to you today!

    Alison xxx

        

  • FormerMember
    FormerMember

    Thanks, Alison. One step at a time - how many times have I shared and used that advice? It's great to be reminded. Have a lovely day xxx

  • FormerMember
    FormerMember

    HI Daloni

    So sorry to read your news.

    Why do we constantly need to be in a state of heightened anxiety. It seems impossible to just have a clear state of mind for just a few months to enjoy holidays etc. with no worries.

    I watch your progress and think of you often.

    I am having problems at the moment my blood platelets are now the lowest that they have ever been nobody advised me that the radiotherapy could further damage my thrombocytopenia. Apparently my white cells have now also diminished and the consultant is now talking of another bone marrow biopsy as is concerned that the cancer is back. I am going back in 3 weeks for more tests to see whether it was just a blip but like you it doesn't seem likely.

    Hoping upon hope that you get some good news.

    Love Lesley xx

  • FormerMember
    FormerMember

    Hi Lesley,

    How nice to hear from you but how sad to hear about your problems. Does the low blood cells situation make you feel poorly? I guess low white blood cells make you vulnerable to infection and low platelets must mean you have to be careful about cutting yourself or scratching insect bites and the like - but that's just a guess. I do hope we both get good news soon. If your cancer is back, well you know where to find the support you might need. Always here for you, my lovely. Do let me know what happens.

    Much love xxx

  • FormerMember
    FormerMember

    H Daloni

    Blood problems are causing fatigue and I am covered with bruises which just keep bleeding under the skin for days. Certainly not going to win any lovely legs contests yuk!!! it really does look horrible no shorts for me.

    I think I knew that I had problems when I got bruises that bled under the skin without any knocks but it came as a shock to find that I now have white blood cell issues as well.

    As I've said before this really is the gift that keeps on giving.

    Never mind onwards and upwards I am taking my daughter and grandchildren to see Mamma Mia on stage in Leeds on Friday where I intend to be singing and dancing in the aisles that is if my family don't sit on me to contain me. Mind you the way I am feeling at the moment I could sleep through it.zzzzzzzzzz

    Lesleyx