One door closes...

FormerMember
FormerMember
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Dear friends

I’m on my way home from the hospital after picking up ct scan results.

The bad news is that the cancer has grown since the start of the immunotherapy in October. Boo. Mostly the tumours are still too small to cause me problems but they’ve grown enough to take me off the trial.

My doc did have something else to offer me. It’s another trial, this time of a drug that inhibits DNA repair. The theory is that this drug, combined with the brca mutation (which also inhibits DNA repair) might give the cancer a double whammy. It’s the same theory as the PARP inhibitor that I took back in 2016. Anyone with a science interest, it’s an ATR inhibitor known as AZD6738. It comes as a tablet. Not much is known about the side effects but they include the usual - nausea, fatigue, anaemia.

Here is a link https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-AZD6738-radiotherapy-advanced-solid-tumours-patriot

They hope to start me on this either just before or just after Christmas.

Here I go again.....

Xxx

  • Aw

    You're being shoved from pillar to post and all that is sapping the nervous energy out of you. No wonder you're tired, I'd say a good rest is called for, there's nothing more you can do. Sit back and kick off your shoes. 

    Yeah, the weather was foul today, I wouldn't recommend walking around in pyjamas in it lol. 

    I'm sending you a big hug because you need a big Tvman hug. 

    Goodnight, and sleep tight.

    Tvman xx

    Love life and family.
  • Hi

    I wish you the best of luck for the next four weeks, Lynn, I'll have my fingers crossed for you for 4 weeks.

    Tvman xx

    Love life and family.
  • Hi ,

    I think that we all crave certainty and struggle when we don't really have a clear direction of where we are heading.  A good rest seems like a lovely idea, especially when the weather is so inclement.  It was really windy up here yesterday but this morning looks surprisingly good.  It is supposed to be dry with some sunshine but apparently once I venture through my door it will be very cold.

    I know that you have confidence in your team so hopefully they will soon have you moving forward with a plan again.  Until then enjoy the break.

    love and hugs,

    Gragon xx

  • FormerMember
    FormerMember in reply to Gragon

    before I got on my immunotherapy trial it was a bit hot and cold like that, sending me into the gloom’s......with hindsight, they were havering because of it being tricky to get a biopsy and they couldn’t go ahead without one.  The consultant said we will never put you at risk just to get you on a trial, so you might find it is that.  They wouldn’t go near my liver for example, which was where my biggest tumour was.

    fingers crossed it’s that and they will have a better idea when they have had a good look at the scans (and mine needed a second opinion before they went ahead) xxxxx

  • Hi Daloni

    Wishing you well and hoping things go forward for you xx

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for the boost. You’re right , there is always a certain amount of arsing about with trials and safety has to be the top priority. I’m actually quite good at living with uncertainty as a rule. It was just that I’d used the device of looking forward to something hopeful rather than backwards at something I can’t change as a device for not getting bogged down by the crappy scan results. 

    I have had a lovely morning that’s brought in a dog walk, a nap and some crochet followed by a cheese toasty and equilibrium has been restored 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Oh Daloni 

    I'm so sorry to read you had to come off the treatment 

    Your team sounds like they r on the ball 

    I wish u all the best on the new trail treatment I will b praying 4 u this one is ok 

    Lots of love 

    Kym xx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear daloni,

    I’m thinking of you during all the changes. Again who knows -give a run if you are up to it. You never know. We are not in control all by ourselves - and it seems you have had good luck in extending your time from on High. 

    I really like the name cheesy toasty. Sounds great. Wish I could come  over and taste one with you.

    I think I owe you a virtual tour of Kauai to warm you up. I’ll start working on it when I return.

    In the meantime  try to disconnect from it try to Enjoy the day while waiting

    I just found Justice Ruth Bader Ginsberg’s exercise book routine all in house with bands she has beat serious cancers 3 times by keeping strong Focuses the mind I’m going to start her PT routine tomorrow- supposed to increase muscle and strength and posture. So I’m going to try it. 

    Anyway do what ever is good for you and yours. Please don’t let the medical procedures run you down. Wish I could help in some way. 

    Rest, love, music and dream. 

    Hugs to you and yours. 

    Millie

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you, Millie . You are quite right that exercise really does help, especially if it’s outdoors. The dog is getting me out and about and it’s been so therapeutic. I can let her off the leash now so she can run round while I stagger along slowly with my walking stick. 

    I shall think of you while eating cheese today. I have two dear friends here this weekend so it’s all go. We have just booked tickets for the Pre Rephaelite Sisters exhibition at the National Portrait Gallery in London. It’s a beautiful gallery, right on Trafalgar Square, and I love the Pre Raphaelites. My mother was fond of telling me I looked like Elizabeth Siddal. 

    You have a great day 

    xxx

  • Hi Millie 

    Hope you are well and not too unhappy about having to stay in Kauai (love to know how to pronounce it btw, maybe you can help us with phonetics). If you were able to put up a virtual tour, the site might crash because I'm sure there would be more than Daloni and I looking at it!

    You haven't lived if you haven't had a cheese toasty although I must say I more than likely would have ham in mine too but my favourite would be a French version, a ham and cheese toasty with a fried egg on top, called a Croque Madame. Without the egg, it's a Croque Monsieur. I am a Francophile at heart. I have a recipe book that has various different combinations of foodstuffs in between the slices of bread.

    Good luck with the routine, hope it keeps your body young and supple Slight smile

    Tvman xx

    Love life and family.