Treatment delays and an altogether confusing week

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It's Nettie123 her again.

Rectosigmoid resection 2021. Liver mets discovered weeks after colon surgery, also possible mets on one lung. 

My latest liver met is on segment 4 of the liver and is only 8mm. There are some possible tiny mets on one lung, that have increased gradually in size. 

Current plan of action - chemo for six months (along with Cetuximab - if results show I'm suitable for Cetuximab) & scan after first two months, to see response, consider ablation.

Doing well overall, but... this last week has been unsettling...

  • Folfiri - first cycle 27th May - fine, had it before so knew it would go well. 
  • Fri 7th June - I was telephoned, after pre-chemo, informed of possible delays in pump arrival so to wait at home, until telephoned on 10th.
  • Mon 10th June - telephoned by the unit, asked to come in on Tues 11th at 14.00 instead.
  • Tues 11th June - informed that the chemo pump was there, but was leaking, but to come in have new bloods done and then back Wed for Chemo.
  • Tues 11th June - went in for bloods/pre chemo etc.  Informed chemo not possible Wed, but that following Tues (18th) would be fine and that I would be starting Cetuximab as results now in, so would need to sign consent etc. Asked to attend fresh pre-chemo on Fri 14th.
  • Fri 14th attended pre-chemo. Given a pre-cetuximab chat, in room with nurse. Told I would need to sign form on Tues (18th) before chemo. Given a new printed schedule of appointments etc.
  • Fri 14th late afternoon - telephoned and informed that there had been a mistake and I was not suitable for Cetuximab. Apologies etc.
  • Fri 14th very late afternoon - informed that my bloods were a bit low so have delay chemo until 24/25th, pending bloods etc. No knew pre-chemo appointment given. I'll have to phone early Monday morning (having port fitted at 12)

Basically a very frustrating week!  Any advice anyone??

Have a cool weekend! I'm off to do a table sale in aid of Cancer - selling some of the books I've written.

Nettie123

  • Hi  

    It does sound like you've had a very stressful week. 

    I don't have any advice as I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    Hope you get some answers when you ring the hospital this morning.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi  

    I don’t know how I missed this post . So sorry .

    I am thinking you might need to know a bit more about your cell type . Have you asked if you are a candidate for immunotherapy?

    Knowing your exact cell type would help you know exactly what you are compatible with and stop the delays .

    The technical issues are a total pain . We had one particularly protracted day when the Cetuximab kept separating as the pharmacist mixed it . On attempt number five it worked . However that took about six hours as others needed their doing too . I was on the verge of calling it a day and taking her home as she was exhausted when they had some success. I do get there are aspects outwith their control but when you get a run of them you are rightfully deflated for a bit .

    However I know our very own  has incredible bounce back just like my mum and will get there but everyone needs a little support to get through this process .

    Good on you for the sale  . Did you have much success .?

    You are the last to complain so I am so sorry to miss your post when you need a wee chat . My sister is away so I am chief cook and bottle washer to mum . She has sleep apnea now . I got calls to soRofl a bit of hair sticking out as she is banned from the curlers . She was going out and wanted everything in order ! RoflRofl
    More power to her elbow .

    Being out the system is ok so far . No obvious signs of the lung tumours and she is enjoying the freedom . 
    You take special care ,

    Court 

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  • Hi Court

    Wow you sound so busy. Sorry to hear your Mum has sleep apnea - annoying, and scary sometimes as well. My husband doesn't snore, but his Parkinson's Disease can cause him to choke occasionally, so I have to nudge him from time to time to ensure he's on his side as it's safer! Glad your mum is keeping her high standards up and insisting she looks good when she goes out - she's one determined lady!!

    I saw my oncologist a little while ago and I did ask if I was suitable for immunotherapy, but he said I was not. This was when he mentioned Cetuximab.  Yes, totally agree, I need to know what my exact cell type is and then possibly be a step ahead in knowing what's compatible. Due a phone call from Macmillan Nurse Specialist tomorrow, so will ask. 

    Table sale was an absolute wash out - literally sea-wind and rain beating down on us. I chased several books along the green, beside the sea! Swiftly we arranged them in the back of our van, doors open, overhang protecting them. Sold a few - every little helps! Most people gave up and went home! The only other person who sold anything was the hot dog van and even he didn't do very well!

    On Saturday, after the book sale, I wrote to Tracey, our Macmillan Nurse Consultant. Just a brief bullet pointed update on the delays. I did, however, ensure I praised the wonderful staff at my Day Unit where the Chemo is given. They are brilliant overall - I can't fault them.

    I asked if the delays meant I should phone radiology and re-schedule my CT Scan (after 4 cycles), which Tracey had kindly arranged to fit in before our family holiday (don't want to miss white water rafting!)

    Monday - at the hospital, whilst awaiting port to be fitted, I received a phone call, from the Day Unit. Tracey, our Macmillan Nurse Consultant, had asked them to check the bloods again and schedule chemo for the next day if the levels were better. The Day Unit arranged for the hospital doing my port, to take the bloods and put them on the system. Hence - bloods now suitable - port fitted successfully - chemo given yesterday - things are looking up!! Grinning

    Apologies for length of update!!

    Best wishes to you and your Mum SunflowerSun with faceSunflower

  • So pleased to hear that  . It’s always a relief to hear your bloods are behaving . You will be relieved.

    The weather has been so mixed lately but good on you for turning up and doing your part. 
    Love the sound of white water rafting. Just my sort of thing .

    Cant have anything interfering with our holiday plans . Just not allowed .

    This gives you the chance to find out your cell type but no urgency now the chemo has kicked back in .

    take care ,

    Court 

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