Agressive Cancer visible on outer & inner surface of stomach

• Hi SDG, I have stage 4 gastric cancer and like your father was advised I was palliative. Post EOX I responded well and really pushed for a review and repeat staging laparoscopy. This showed clear peritoneum and also cytology was clear so 3 weeks ago I had a total gastrectomy. I went for review yesterday unfortunately the margins were not clear indicating microscopic residual disease . I  am not sure what's next and wanted advice I would love the opportunity to chat as it appears your father's doing amazingly thanks Jie

Just an update after Chemo 3/6

Poor Issues with PICC had to be removed 

4 days in hospital due to infection and clots in PICC arm.

Portacath fitted and now further issues - phew 

Now at Chemo 3/6; still bad bad Ulcers - using Iglu pastels which replace the same mouthwash identical ingredients , just pastels.

Have very rough teeth on upper set on inside lower are fine - very odd - sonic toothbrush seems to remove it; but comes back every day.

Feeling a lot more drained after chemo 3 than the other 2 chemo sessions

reduction in steroids after Chemo; ramp down rather than just stop, but extends drained days post chemo.

Head hair & eyebrows almost gone , good selection of hats ! Peaky Blinders included !

Eyesight affected, so new lenses ordered for short sight; long vision unaffected 

Just 3 more cycles to go.

Affecting family more than me I feel.

Been lax on update

PICC removed after chemo2/6, clotting in arm, and infection meant a visit to hospital, 34 hours in a chair in Minor injuries dept before finally a bed in pre op for a few hrs and then finally on a ward.

recovered and had a portacath installed.

completed 4/6 Chemo and was told no more Chemo. Yepee, that was four weeks ago, but Chemo 4 really took it out of me, massive drain on energy levels, and cold sensitivity massively increased.

now potential stomach out op on 15 or 22nd of April.

weight increasing and able to eat more, passed pro op assessment, cycle test, still got it.

looking fwd to op and then 4-6 weeks off before chemo restarts

Work has been massively supportive and beyond brilliant and my therapy to beat this.

#zero2cancer

well here we are, after a diagnosis just before Christmas and four cycles of FLOT and five weeks ago a total stomach removal I have been given the all clear from consultants. 

Only 3 of the 32 lymph nodes had signs of cancer, which apparently is as good as it gets and signifies Cancer came out with stomach.

I have had 5 weeks of getting used to no stomach, so liquid diet for 2 week, then pureed (well chopped) food for 2 more weeks and then finally 2 weeks of soft food. 

Chemo FLOT round 2, consisting of 4 cycles over 8 weeks is planned for end of June.

big effort trying to get fit again post surgery just like post chemo round 1, but I expect chemo will be harder this time as not fully fit and lost circa 12kg since stomach removed and gradually putting it back on.

always suffered from low blood pressure, but post surgery it has been even lower especially in the morning and suffering for most of the first 4 weeks from reduce energy levels, really drained and wasted.

But now on the up, which I am sure will reduced again once chemo starts, but who cares as it is all positive as Cancer has gone.

1 out of 2 survive cancer and I am the lucky one as one of my friends is on the other side of the fence and sadly will not get any better 

Hi, that’s brilliant news!!!

I had my stomach removed 10 weeks ago now and they told me there was a few cells on the outer side which was expected with stage 4 signet ring. They took 30 biopsies of lymph nodes and all came back negative.. I started my 2nd round of 4 FLOT last Friday. It’s not been as bad as the first round of treatments so whether my strength has been reduced I don’t know… but it’s definitely different without a stomach especially with being sick as all I’m doing is retching and bringing loads of saliva. The nausea feeling is still there and the diarrhoea but seems to be more under control…

I hope all goes well for you!! 
Take care 

Michele 

Lovely to hear this. Well done for defeating cancer. Thanks for sharing. 

I'm having stomach removal next weds, 22 june  and yr post has helped me

Best of luck, they should warn you when you wake post op, you will have many tubes coming out of you and is rather scary but perfectly normal. 
I was told I would feel like I’ve been in a car crash and they were right.
Your friend is the self administration of morphine with a button, but the tubes were out on day 3&4 and I was out after 9 days, just because  I suffered from very low blood pressure. 
but it’s all worth it ! 

I’ve been fortunate no massive side affects during the first round of chemo.

now post op I’ve suffered a bit from repeated diarrhoea with no stabilisation after 6 weeks. Need to speak with a dietician now that I am back on small amounts of normal food albeit 6 times a day. Causes dehydration and contributes to low blood pressure especially in the morning. 

Fortunately no sickness at any stage, but can’t stress the lack of energy for 1 month post surgery very draining. 

all the best. 

Hi SDH

Just read your dad's stage IV story so thanks for sharing. Really helpful to understand your journey and great to hear how your dad is doing. We are in the process of going through this ourselves and hoping we can find a way through this. 

Chemo 6/8 tomorrow. The repeated diarrhoea is ongoing, been like that after Chemo 5/8, but was not an issue from Chemo 1-4 for some reason. Some talk of lack of enzymes but awaiting tests.

Expecting to fall off the cliff after chemo 6/8, chemo 5/8 came as a shock in that rather than being like Chemo 1, it just continued where chemo 4/8 left off.

All a means to an end though, so just sticking with it.