Newbie saying hi

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Hi, I'm new to the group and in my mid-40s.

My story started back in the summer of 2021 when I suddenly had a pain in the ribs on my right hand side after dinner.  Various things happened along the way with costochrondritis diagnosis, taking ibuprofen, being prescribed naproxen, doing physio for what I thought was sciatica in my leg, having blood tests in early 2022 (struggling to eat dinner) that came back normal aside low folate....to going to walk in centre in June 2022 as in pain.

Cut a long story short, I paid for a private ultrasound in June 2022 and was told likely metastatic cancer due to lumps in liver....fast forward to below:

I was then initially diagnosed with Cancer with unknown primary in August 2022, following a liver biopsy and blood tests eventually showing high tumour markers. Finally Stage 4 Cholangiocarcinoma in September/October 2022, following a gene test which showed I have the FGFR2 gene.

I had radiotherapy for mets in my shoulder and femur - ending up being admitted later that evening for extreme pain, which resulted in almost a week in hospital.  The gift from hospital when I got home was Covid! 

Was given 6 cycles of Gen/Cis chemo, finishing in March 2023.  I had a three month break from any treatment until my next CT and bloods.  The results this summer showed no cancer in heart/lungs/bile duct etc, but that the tumours in my liver had started growing again.

I'm currently on Pemigatinib (early in the program of taking it), which is actually wreaking more havoc on me than the chemo did....hoping I can find a balance with Loperamide to help the diarrhea that it causes. 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    Thanks very much for taking the time to describe your 'journey' to a diagnosis and then on through treatment. I'm sure new people coming along who have only just been diagnosed will find it very useful.

    You might also like to add something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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

  • Hi. Good to read that you had a good response to gem/cis. Hopefully the gene drug is really effective in shrinking down the liver cancer.

    You can read my profile however haven't recently updated it. I'm currently on the gem/cis cycle 1 completed & starting cycle 2 on Friday.  Today I found out I've the BRCA2 gene. Will remain on the gem/cis & then have gene therapy drug options. 

    Really hope your liver tumours shrink down. 

  • Hi there.

    I checked out your profile like you suggested - seems you've been through the mill with struggling to get answers too.! I hope you have success with the gem/cis in shrinking things for you - how many cycles will you have and any side effects yet? I also wish you success with the gene therapy when you start it too!

    Totally understand the Astonished when told incurable and would just be treating.  Some days still feel a blur to me and despite counselling (in a hospice above the patient beds), I have my moments....

    Since I last posted, I've had the results of a bone scan done 1 year after my last.  Thankfully no new areas, my shoulder reduced and my femur resolved by the raiotherapy last year - however, a spot on my tailbone has increased, so hopefully radiotherapy for that.

    Due to start 3rd round of gene tablets, it's been stressful getting them into the hospital ready for me to collect and start the new round.  Diarrhoea, I've just got to learn to manage it when on the drug.

    Have started losing hair and eyebrows too on it, which I didn't do on gem/cis.

  • I checked out your profile like you suggested - seems you've been through the mill with this cancer and struggling to get answers too....it's definitely a sneaky one! I hope you have success with the gem/cis in shrinking things for you - how many cycles will you have and any side effects yet? I also wish you success with the gene therapy when you start it too!

    Totally understand the shock when told incurable and just treating to keep you ticking along. It definitely is a surreal almost out of body feeling like someone else is being told that news.

    Since I last posted, I've had the results of a bone scan done 1 year after my last.  Thankfully no new areas, my shoulder reduced and my femur resolved by the raiotherapy last year - however, a spot on my tailbone has increased, so hopefully radiotherapy for that.

    Due to start 3rd round of gene tablets, it's been stressful getting them into the hospital ready for me to collect and start the new round.  Diarrhoea, I've just got to learn to manage it when on the drug.

    Have started losing hair and eyebrows too on it, which I didn't do on gem/cis.