Stage 4 bowel cancer

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Baxter2

7 years since diagnosis - An update!

Well, now that we're into August, I want to announce that this is really a significant milestone for me. I was diagnosed stage 3 in 2015 and despite chemo, progressed to stage 4/metastatic bc in Jan 2016. I was told I may only have 6-9 months to live if chemo didn't work but in any case, not expected to live beyond the end of 2016. Following second opinions, surgery and continuous chemotherapy, here I am planning my 'big' birthday bash in the garden later this month! This is a birthday I never ever thought I would see. I think I've had around 135 cycles of chemotherapy (Folfiri and Cetuximab) to date and my last routine CT scan in June showed no evidence of disease again! 🍾πŸ₯‚πŸŽŠπŸŽ‰πŸŽˆ

Like everyone else, I've had my fair share of ups and downs recently and apologise for the radio silence on the forum and stage 4 fb group. I've had significant back pain since February which was repeatedly put down to muscle strain by physio, GP and Oncologist. At the beginning of May, I was admitted to hospital by ambulance as I simply could not move from a lying position due to the most excruciating back pain I have ever experienced in my life. Thankfully, they were able to rule out spinal cord compression and spinal metastases but I was found to have 3 spinal fractures and a fourth area of concern around neck. I was discharged home and a hospital bed delivered as I was unable to sit up without the raiser bed. Rather foolishly (and probably because of my sheer determination to get better) I went on holiday to Crete (which was all booked and paid for) It was ok only I could hardly remember lots of it due to the amount of pain killers I was on. πŸ€ͺ. Indeed, for a good many weeks, I was often unable to string sentences together and unable to type text messages! Just ask @Lirio345! πŸ˜‚ We arranged special assistance at the airports and with my shiny new walking stick from Amazon, nothing was going to hold me back. Only a few weeks after this, I developed infection in my port and on the day of my scan in June, I was admitted for a week to hospital for IV antibiotics and port removal. ( I've since had a new one inserted and chemo last week) πŸ‘ During this admission, I was struggling with my back pain so remained on high doses of opioid aI killers and diazepam. I then learned of the loss of my dear friend Marie (mem) and this news affected me greatly. I have struggled to come to terms with her passing and thoughts of my own mortality but I am making better progress now. She was such a gorgeous human being inside and out and I miss her so much.

I now feel in a much better place both mentally and physically. I'm able to walk much further and have discarded the stick and hospital bed! I've had a Dexa scan which diagnosed osteoporosis and osteopenia and highlighted a high fracture risk in lower spine. I'm being very careful but feel much more optimistic of recovery. I've started on treatment for these conditions too. It is felt that they have probably been caused by long term chemo and perhaps steroids since no family history of this. I wonder if anyone else has experience of anything similar happening? I'd be really interested to know since I think for those of us on continuous or long term chemo find ourselves in 'unchartered waters' to an extent. So today, on Monday 1st August, I do feel the challenges of the last few months are behind me and I can get in with living life again! Next plan is to get back to my wild swimming and get organised for my birthday shindig! I hope by sharing my good news of survival and clear scan along with the not so good time I've had recently helps others a little. Us moderators have our ups and downs too!

Sending lots of love and strength to you all on your own cancer journeys,

Karen 🌻🌻🌻🌻🌻

terri m

I am another one of your fan's here @Baxter2. You were one of the first members to give me hope when I was initially diagnosed back in 2017. I am sorry to hear you have had a difficult few months , but I am now rooting for you to move onwards & up again , also being able to return to your beloved wild swimming very soonπŸŠβ€β™‚οΈ . Thinking of you & sending a big hug :x::x::x:❀

bettyb1987

Thanks so much for the update Karen. You r had such a tough few months haven't you but I'm so glad your recent scans are positive. Congratulations and you deserve the best birthday soirΓ©e!! Lots of love B :x::x::x:

kathyS

@Baxter2 what a time you have had. I was upset about Marie and I did not have any of the interactions you had with her so I understand how you feel regarding how triggering this is for you. Every person that dies of bowel cancer is precious and it always makes me look in the mirror to check I am still β€œHERE”. It’s so easy to be not present and push bad and sad feelings away and when we feel like this it is important - to acknowledge it’s OK not to feel tip top about having a long term chronic illness which a lot of people die from. This doesn’t mean our stories are all the same and I am thankful that you are here on the forum and a testimony to living long term with a S4 diagnosis! It gives us all hope when we go through our own highs and lows and thanks for sharing so much of your insights into your treatments and feelings. Brilliant you are starting to feel better and getting treatment for the osteoporosis.Have a Happy Birthday run-up to celebrating your milestone and lots of love :x::x::x::x:

Tinkletot

@Baxter2 welcome back ❀ you give us all hope. 🌟 Hope u have a great shindig no doubt u will. Cheers πŸ₯‚

Baxter2

Oh my goodness......you lot bring so much joy, inspiration and a deep appreciation of the power of your caring words not just towards me but your fellow bowlies on here! Thank you all!

@LWJ81 - Hope you're still keeping well. Thank you! :x:
@Titanicgirl - Keep well and we WILL get that swim one of these days!
@Leaguefan - Thank you for the lovely works Keith. I'm delighted for you with your recent good news!
@terri m - lovely to hear from another longer term survivor! Thank you for lovely words too!
@bettyb1987 - thank you for your good wishes! Sending lots right back as I think you're waiting for a mammogram very soon? I hope that all goes well and provides nothing but reassurance that it's nothing to worry about! 🀞
@kathyS - Thank you for the lovely message too. Yes, Marie's passing deeply affected me and because I was in hospital and so drugged up a lot of the time, I struggled to even accept it had happened. As you say, every persons life is so precious and we are all so very lucky to be survivors!
@Tinkletot - Thank you! I hope you're keeping well too!

I hope you all have a good day! Thank you!

Karen 🌻🌻🌻🌻🌻

blueskydays

@ Baxter2. Wow, you are such an inspiring lady. Your sense of humour and sheer determination to lead your life on your own terms and not to be dictated to by this disease is truly amazing. I really hope you have a fantastic birthday bash filled with many cocktails and plenty of dancing whatever the style! So glad your health is improving. 😘

LWJ81

All good thanks @Baxter2, it was 4 years for me since my stage 1 diagnosis in March.
I feel so fortunate that it was caught early, especially when I see what so many on here go/have been through. You were one of the first to give advice and comfort me, and I will be forever grateful.
It's true, you are an amazing lady πŸ’ͺ🏻.
Take care :x::x::x::x:πŸ’–

Karen17

You've certainly had a few bumps on the road this year @Baxter2 but pleased to see you're back to help keep us all in order πŸ₯° Enjoy every moment of your birthday celebrations πŸŽ‰πŸ₯‚

1234annie

Glad to hear you are on the mend @Baxter2. I too have had back pain. So much so that I've asked for my scans to be brought forward. I did lift a very heavy bag the day before it properly 'went' as i turned awkwardly to put something in the cupboard but the pain was extraordinary and us cancer folk know 'pain'. I too was unable to walk but saw a chiropractor a few times and it has improved but it still twinges in my spine and I'm scared. I also feel more tired but my bone density scan was OK. CT scans are not till 26th Aug. Keep us updated. :x: :x:

Baxter2

Thank you once again you lovely lot for the uplifting comments! I appreciate them all!

@blueskydays - Thank you! I can tell you my sense of humour and determination took a fair knock at times but thankfully, I feel the old Karen has emerged once again!! :x::x:
@LWJ81 - Thank you again for a lovely comment! Wishing g you continued good health! :x::x:
@Karen17 - Thank you! Can't wait for the big birthday! It feels Quite unbelievable! :x::x:
@1234annie - Thanks Annie! I'm so glad your scan was clear! Great to hear how well you're doing! :x::x:

Thank you all and warmest wishes sent,

Karen 🌻🌻🌻🌻🌻

louise28

hi karen @Baxter2 am so happy to hear this. You've been through a lot and the loss of a good friend is so so hard. and surreal. Marie seemed to keep going and going and always have some kind of plan or treatment so it seemed so shocking. I expected her to go on forever!

i had a dexa scan when I went through menopause at 37. It showed v v early osteopenia. It could be just one of those things....or it could be that it was connected to the menopause, nobody really knows but I was put on HRT which has been good and also strong dose D3 and calcium. I've a good diet and I do a lot of running now so the team were hopeful I could slow down the process. Would you consider a longer treatment break? I know its tricky....i mean its possible, surely, that you wouldnt have a recurrence off treatment. It is a v difficult decision I imagine, but may be worth considering (im sure you have already!)

Sending you love and a million more clear scans.
:x::x::x::x:

Baxter2

Thanks so much @louise28! Yes, losing Marie was such a shock to me and everyone else. She was such a special person and friend as well as fellow mod.

Isn't it great that you had a Dexa scan at such a young age and that you can now take extra care to protect your bones as best you can. Sadly, I've never had one and it was only done (at my request) following the hospital admission with the 3 spinal fractures. I've been on high dose vitamin d and calcium for most of my cancer diagnosis. I do wonder why neither my GP, Oncologist or the physio I saw thought to do a scan following my repeated complaints of back pain. In a way, I blame myself for not making more of a fuss about it and just getting on with things. I probably made matters worse but no point in looking back I guess. I'm seeing a rheumatologist next week and this will hopefully be helpful in terms of advice and treatment going forward. I've lost a lot of confidence in myself and feel very apprehensive in case I cause any further fractures.

In terms of treatment breaks well, that's the million dollar question! I do have high risk cancer ie 16 out of 18 lymph nodes positive at diagnosis as well as poorly differentiated cells. I also had venous invasion. My first oncologist told me I'd be on chemo for life (but she also told me I was unlikely to survive beyond 2016!) My disease progressed from stage 3 to 4 on Capox within the first five months too. Also, when I had a break of six months for my liver resection and then CRS/HIPEC in 2017, the baseline scan before restarting chemo showed 4 small new liver mets. That was pretty devastating. They all 'disappeared' with chemo only but I believe these will probably re-grow if chemo stops. My Oncologist says I can have a break until my disease progresses if I like but I'm just not keen to do that at all. I'd much rather keep it away (or under control) with chemo. I suppose I'm quite fortunate in that I've learned to manage the side effects and it's all just become a way of life now. Hey ho! Anyway, I have to catch up with that Kim lady whose some 18 or so cycles ahead of me! We're going for a record I reckon! We have so many similarities it's quite funny.

Take care Louise and thank you once again! Lots of love,

Karen 🌻🌻🌻🌻🌻

louise28

thanks for your v honest reply @Baxter2 I think its hard. when you've cancer other niggles sort of go into the background but my GP was v proactive and said look we need to keep you fighting fit so I want to do the scan. I suspect i would have had some thinning because its possible that it was just there already but my hope is to slow it down with the Vit d and calcium.... i hope your team have some tips and can help you do the same and those fractures heal

i think your response is really helpful. its something i have thought about and i really undersand the safety blanket of chemo and keeping things at bay. I think you and Kim are going for the 200!!! who knows. its great you had such a good response to this after progression on capox too. reassuring and long may it last. It's hard i think.... i dont know what I would do in your situation. Im having a course of FOLFIRI at the moment and i suspect i wont be offered continuous treatment but who knows....
:x::x:

Baxter2

Thank you @liz! I’ll read it later as have my little grandson Marty today.

Lots of love,

Karen 🌻🌻🌻🌻🌻

Gula

Hi, @Baxter2. I am so happy that you are feeling better, Karen, and treatments are working. When I was diagnosed I’ve read your story again and again thinking how brave you are! You are an inspiration for me!!! I hope you have an unforgettable birthday party!!! All the best and take care :x::x::x:

kas52

@Baxter2 you are in my panel of heroes here ....amazing person amazing achievement. Have a fantastic birthday (I just had mine 60!) And enjoy ❀️ if our fantastic Scottish weather allows you to have one in the garden...on west coast is constantly wetπŸ˜ƒ . Willie using his freedom almost to extend , being happy and we having another holiday before his 6 months scan in November . Happy for you .Big hugsxxxx

cw1988

I love to read your stories and updates it really makes me put down the phone feeling more positive. Amazing news (had a giggle at you not being able to string a sentence together though!) We have my husband first scan since treatment this Thursday and it’s a struggle to not be overcome with fear but stories like yours make me realise you have to move forward and even in what seems like a bad situation there is always hope :x::x:

ellenelliott93

@Baxter2 Sorry to hear you have had such a rotten time lately but really glad to hear you are fighting back with your usual savoir faire...you have always taken the time to offer support on all my posts over the last ten months..its helped me and Tony so much and has helped process what has happened especially with his recurrance after such a short time...having lost a friend to something totally unrelated to cancer I do understand how hard it is and how it makes us face our own mortality and thats without cancer in the mix so it must be so hard for you..rest in peace Mem...:x::x:

Baxter2

Thank you all for some more lovely comments. I feel truly humbled by your thoughtful and caring words.
@Liz Blakelands - I had a read of this article which was pretty interesting! I'm hoping to top up with lots of sun over the next few days! πŸ˜‚
@Gula - thank you! I'm glad my story helped give some hope to you. I remember searching for and reading lots of profile stories when first diagnosed with stage 4 for the same reasons!
@kas52 - Thank you! Belated birthday wishes to you! Mine is my 60th too and yes, we're having it in the garden! I have a cocktail bar, saxophonist and food all booked up so little prep for me! I'm just hoping it doesn't rain!! 🀞🀞. I hope you and Willie get a lovely holiday booked! That's next on my to do list!
@cw1988 - Thank you! I'm glad my story gives a bit of hope to you and others. We all need hope! Scans are always a challenge and don't get any easier in my opinion. I do hope his is all good and the news you're looking for! 🀞
@ellenelliott93 - Thank you! I'm glad I've been able to offer something in the way of support to you and Tony over the months. I know how much I've been helped by others and how important that feels when it's needed. I think we all miss Marie and I often can't quite believe it's actually happened. πŸ˜“.

I hope you all have a good day and can enjoy the beautiful sunshine!

Lots of love,

Karen 🌻🌻🌻🌻🌻