Stage 4 bowel cancer

DMR700

Bowel & liver - now lungs too

Hi all,

After 9 months of chemo, scans, a laparoscopy and a lot of back and forth, I was finally due to go in for stage 2 of the RALPPS procedure tomorrow (2 stage liver resection) combined with Bowel resection and stoma reversal.

I thought I was finally seeing the light at the end of the tunnel!

Not to be. I was sat waiting to be admitted when the specialist nurse took me to a side room with a Macmillan adviser. They advised surgery not going ahead as MDT this morning raised concerns over lung mets. Scan was 23/12 but I’m guessing delays due to Christmas. So I’ve actually travelled to London from Scotland only to find this out now!

I’ve had “indeterminate” lung nodules from the outset but they never grew or shrunk so my onc wasn’t concerned about them saying unlikely to be mets.

It appears they have now grown or multiplied during chemo break (last chemo 12/9/19) I don’t have full details yet, seeing surgeon tomorrow.

Has anyone had a similar experience with a positive outcome? Is there a possibility chemo could clear lungs and surgery back on table for liver and Bowel?

Thanks :x:

Baxter2

Sending so much love and hope as always @DMR700

Karen 💜💛💙❤️💚

HH79

Hi lovely @DMR700 just tagging @Bear G as he is NED from lungs & liver previous too :x::x:

GD62

Hello @DMR700 , you poor soul. that is dreadful news, hope and pray that your team come up with a good plan....hugs :x::x::x:

Just realised you are from Carluke, as I originally come from Rutherglen :x::x:
You' look a very young wee lassie :x::x::x:

kas52

I hope only they will find some solution for you,you never know what is round the corner.Big hugsxxxx

Bear G

Hi @DMR700
Sorry to hear your news and that you had to travel all the way to London to hear it.

@HH79 is quite right, I had secondaries in liver (x3) and lungs (x8), which resolved following intensive chemo with folfiri plus avastin. This left me with 3 dots on my lung that they thought were scar tissue, after 4 years one of them kicked into gear again and grew enough to raise concern. This was successfully treated with ablation surgery, I don’t even have a scar from that.

What’s the plan from the MDT, will they start back on chemo or try something like ablation for your lungs?

Whichever way, there is hope, I’m walking proof of that!

Hope this helps a bit.

Big hugs
Bear
:x::x:

Floss07

I don't know what to say only that I hope you get some positive news - lots of people on here have! :x:

stu

So , so sorry you travelled all the way down for such a disappointment.
Hold onto the fact your a great responder to chemo . My mum is ten years into a stage 4 diagnosis and the first couple of years felt like one step forward , two back with some crushing disappointments along the way .

Chemo did a wonderful job at bringing stability back to her situation. Once she had attained that other options opened up .

The Golden Jubilee has a fantastic thoracic department and some of the junior doctors ( hopefully consultants now) were very proactive and aggressive in their approach .

Remember to find out size and location of the mets as it can give better insight into the best approach for you .

Also some of the immunotherapy results in America are very promising. There is still one surgeon in Germany doing laser surgery on multiple mets . Radio Frequency Ablation if you meet the criteria and many chemo options .

It’s a horrible bump on the road but you responded very well before and no reason not to again .

Take care ,

Stu

Gypsy

Dear@DMR700, justwanted to send love and hugs and so hoping for a good plan for you now in face of such devastating news and disappointment. I have thought of you since meeting you at the lunch date in Edinburgh a while back. Loads of love, Gypsyxxxx

AMM31

So very sorry to read this @DMR700 and pray you get some good news soon. I also met you at the Patients Day in Edinburgh a few years ago - you are so very young.
Love and best wishes. Xx
Ali

terri m

Thinking of you @DMR700 .. Wishing & hoping you get the best possible treatment there is. X💝😘

DMR700

Hi all and thank you for your kind comments. @Bear G inspirational as always! @GD62 not far at all, small world eh!

I feel a bit better having spoken to the surgeon, he advised the lung nodules are still very small and treatable. He wants 4 cycles of chemo then a scan and providing we are at least stable, he will schedule surgery as planned following another 2 cycles. If anything remains in lungs they will ablate later.

I’m meeting with onc this Friday and know she won’t be on board with this plan... she’s already questioned (heard via nurse) why the surgeon is even talking about liver surgery when there are now lung mets. Don’t suppose there’s much point in discussing until we see what the scan says anyway.

I’ve overhauled my diet and am trying to get back into the gym as well as looking at off label meds and supplements. Need to throw the kitchen sink at this f*****r!!!

Love to all :x::x:

Gypsy

Dear @DMR700 , I'm so glad that it sounds better regarding the plan. Your onc needs to get behind this and awful for you if she seems to be unsupportive. You are so right- you need to throw everything at it. Thankfully, there are others on here who have been successfully doing that!! Lots of love and hope the chemo goes well. Gypsyxxxx

charleyb

Keep pushing @DMR700 , we have found our surgeons and Onc don`t always agree, but you keep pushing and making yourself heard! If the lung mets are small then fingers crossed chemo zaps them and then they can be ablated. Chemo worked well on both Charlies lung and liver met so hopefully will do the same for you. Big hugs :x::x::x:

Lexi

@DMR700 I am really sorry you have had such a sh## time with this bloody cancer it does feel relentless doesn’t it, I know each of our journeys and circumstances are very individual but I pray for you that you will get some reprieve just like we have at the moment, after 2 Liver resections to remove 10 metasis and 3 lung ablations to remove another 6 metasis we now have our second stable scan to start the new year with. 💕💕

DMR700

Thanks everyone, you all give me hope! :x::x:

Baxter2

Hi @DMR700

So glad the surgeon has clarified his thinking and you have a clear plan ahead Dani. Just keep focussed on that end goal. Unfortunately there appear to be a fair few oncologists with a similar attitude. You're doing so very well and we're all right beside you!

Lots of love

Karen💜💚💙❤️💛

rebecca1234

I had small secondaries in my lung that had gone within the first few rounds of chemo, so everything crossed yours are as responsive. We have an almost identical spread - I see a naturopath who has me on a supplement plan, happy to share if you think it would help :x::x::x:

DMR700

That would be great thanks rebecca1234! :x::x:

farahat

i think it deponds on the hospital and surgeon i had 2 met on my liver before my liver surgery and my liver surgeon said lets forget about liver met and we go ahead with liver surgery so i had liver surgery and lung mets abliated later

farahat

sorry 2 met on my lung