Hi, my name is Jo and I was diagnosed with advanced stomach cancer in February this year. I have undergone 2 rounds of chemotherapy and was lucky enough to be accepted into the Keytruda trial. I am also undergoing genetic testing as I lost my brother to the same cancer 10 years ago.
I haven't really looked into a support group but i do wonder how many other people have the same cancer as myself and what it would be like to have people identify with me, understand those down moments I may have and maybe I might be able to bring laughter into other peoples' lives that need a little pick-me-up.
I am very fortunate that I am surrounded by an amazing support team, my husband, children, grandchildren and close friends.
Not sure if you've heard about our telephone support group - it's for people with any kind of advanced cancer, not just stomach cancer. You might find that you all share a lot of similar moments (ups and downs) with the folk who are already part of the group. I'm one of the facilitators of the group and in a recent group they shared many funny moments together. It helped take the edge of the difficult times. If you wanted to find out more you can give us a call on 1300 755 632 (Mon-Thur).
I received diagnosis of gastro-oesophageal cancer at Easter in 2017. I actually missed the call from the gastroenterologist on Easter Monday and got the news the following day.
Fortunately, my cancer had been caught early. I had noticed discomfort when swallowing apples - not when it entered my oesophagus, but when it was entering my stomach. Scans in that first week indicated that the cancer had not spread to lymph nodes or to other organs/tissues.
My treatment was chemo-surgery-chemo. The lingering side effect from my first lot of chemo is chronic tinnitus - caused by cisplatin. Surgery was a total gastrectomy with Ivor Lewis-style attachment of my small intestine to the remaining length of oesophagus, but this was all within my abdomen. Pathology from my stomach showed no residual cancer; the first lot of chemo seemed to have killed all the cancer, but they had to remove my stomach and then slice/dice it to find that there was no residual cancer. The lingering side effect from my second lot of chemo is chronic distal neuroplasia (tingling in my fingers and toes) - caused by oxaliplatin (replacement for cisplatin).
I am now back to work. I am eating fairly normal sized meals, although I often eat half of a dinner meal while it is hot and come back to the other half about an hour later. I also snack regularly during the day to help maintain my weight (about 85% of my pre-cancer weight).
Only other notable change is that I cannot "stomach" (pun intended) raw onions, raw cabbage or cows' milk. Otherwise, I can eat pretty much anything that appeals to me; I still can't handle brussel sprouts - never have and never will.
Happy to chat with you (or anyone else) about my journey through the past 16 months. Just let me know.
Great yo read your post. Very encouraging, thank you for sharing your story. I am now on a similar treatment plan - going through chemo, then operation on full stomach removal... then chemo again. So far so good with chemo, but scared very much about living without stomach in my possible future...
I have one large lymph node outside stomach but no other signs or metastasis found after all scans and laparoscopy... Hope my chemo is now killing that. It is called someting like FLOT, and I have a picc line in my arm for all these drugs. If you could tell me mire about anything you went through with your treatment, especially the operation itself, and how did you go afterwards i.e. how long did you stay in hospital, how did you start eating etc... Anything you can share would be very interesting to me, thank you!
You ask about the operation - wow, there is a lot to tell. Well actually, the "lot to tell" is more about he stay in hospital than the operation itself. The highlight during my stay in hospital was talking another patient through an episode of delusions from 1 am through to 6 am on Day 7. Now remember that “everyone is different” and just because this is what I experienced, it could be completely different for you.
Here is the short version; the long version (Communique #8 out of a total of 18) goes for about eight A4 pages…
The operation itself was a bit of a non-event for me - I was out for the duration thanks to the anaesthesia. Apparently, the surgery (ie, adaptation of the Ivor Lewis procedure) took about 4 or so hours. Apparently there were no complications. During the surgery I was fitted with all sorts of extraneous plumbing including a central line to my jugular vein, 2 nasojejunal tubes (not “nasogastric” because I no longer have a stomach), an epidural line, arterial line to my right radial artery, 2 cannulas, abdominal drain and a jejunal feeding tube.
I was in intensive care for the remainder through to the evening of day 2. During that time and even the next few days, I developed a bit of a bad relationship with the opiates that they gave me for pain management – I was having rather nasty dreams where I was witnessing and then rationalising mass murders. So my options were to go without sleep and endure the pain or take the pain medication and have rather disturbing sleep.
The epidural line was to assist with pain management, but I had to be lying flat on my back for it to be working. It was removed on Day 5. “Next time”, I will go without.
The jejunal feeding tube is fitted so that you can get your fill without any disturbance to the work site. They will push you to get as much nutrient in as possible. I started at 30 ml/hr with the plan of getting me to 85 ml/hr asap. I was sufficiently strong willed to negotiate my rate including lowering it during the night so that I might be able to have some restful nightmares.
The important point in regard to the feeding tube is to take control of the cleaning (flushing) of the line for yourself. One nurse in particular was exceptionally efficient, managing to push the 70 ml flush through in about 6.3 micro-seconds. Remember that my feeding rate was set to 30-50 ml/hr This sudden squirt of cold water caused significant pain – my problem not hers. Later, I learned that she could have caused a rupture at the lower anastomosis. No, you need to do it for yourself at whatever speed you can manage – take 5 minutes if that is what it takes to avoid significant pain. And also ask for the water to be warmed to just above room temperature so that you don't end up with cramps from the cool water hitting your warm core.
I started on clear fluids on Day 5 and softs (or semi-solids) on Day 7. The temptation with the food is to “show ‘em what ya can do” – this is a mistake. Take it slow. Eat small amounts, chew it up really well and take your time. Too fast and serious abdominal cramping may help to teach you a lesson, but by that time it is too late. After learning the error of my ways, I tried to pace myself so that I finished breakfast just in time for lunch and finished lunch in time for dinner. Once I could demonstrate that I had my dietary intake under control, the stopped the jejunal feeding, but kept the line in just in case and this required 6 hourly flushing until it was finally removed about 4 weeks after surgery.
I was discharged at 5:30 pm on day 8.
I hope that this is more of a help than a hinderance. Let me know if there is anything in particular that concerns you.
PS Avoid the patient toilets like the plague. Actually, the plague is probably less of a risk to your health.
Thank you for your response. I really appreciate how honest you are. I still have my stomach intact and at this stage there is no discussion of removing it. I am told that the lymph nodes in my stomach are cancer free but I have a node near my liver and under my arm which is showing cancer. Lucky for me it is the same cancer that is in my stomach. A slight step backwards and I think this is why they will not remove my stomach.
I am still working full time and receive treatment once every 3 weeks. I am in my second year of the Immunotheraphy trial and am still optimistic that this will make a huge impact on my primary, it just seems to be taking its time. But that's ok, slow and steady wins the race.......
I am so glad that I asked you that question... Still have to read again and again, and then will ask you more questions if you don't mind...
The info you're giving is priceless to me - I am still more than two months from my "total gastrectomy", but it is all obviously coming... and I also hope for the positive results, and your story tells me I khow nothing yet about what's coming...
In the meantime I feel very much positive about my chemo - hope it is doing the job, and I even enjoy a good sleep in my lovely area (I am on Central Coast NSW) and not going to work everyday...
I will read and analyse your post-operation experiences again and will ask you more questions later please. Msybe even some stupid questions, but I am glad you are here and you have gone through this exactly operation... Will now have to learn some new therminology first... a lot to learn...
Thank you very much Rick!
I did ask about other treatment options when I was diagnosed. For some reason, immunotherapy was not mentioned let alone offered. I would have thought it more effective for early diagnoses than advanced cases, but that just shows how little I know.
I hope that that it is successful for you and lots of others such that gastrectomies become a thing of the past.
I did have 2 rounds of chemotheraphy and this helped shrink my lymph nodes substantially, however, I was lucky enough to have a particular cancer that suited one of the trials. I have MSI High gastric cancer and it was the MSI High that helped otherwise I would've had to have all the chemotheraphy sessions. It's hard to think of yourself as being lucky, but I do think I am one of the lucky ones.
I wish you all the best and look forward to any updates.
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