Hello, I am new to blogging so your patience is appreciated.
I hope to help others in my condition by providing some of my experience LIVING with Stage 4 (metastisised) Gastric Cancer.
Here we are in 2013, it all started the spring of 2011 (at least that is, when the symptoms started) but we did not get a Gastric Cancer Diagnosis until January 2012.
Cancer Advancement/Staging Summary
Spring 2011 Developed Hietal Hernia (so we thought)
June 2011 Doctor examines, does bloodwork. Everything looks good. Advises continuance of self perscribed-Prilosec
Nov 2011 Hietal syptoms worsen. Can eat very little and no eating and drinking together.
Dec 2011 Throw up on way to work, cannot eat at all. Stool has black streaks.
Dec 27, 2011 Return to doctor. Informed that the black is blood and we need further testing ASAP
Dec 29, 2011 Endoscopy & Colonoscopy. Cannot properly inflate stomach for test. Leather Bottle symdrome.
Dec 30, 2011 CT of Pelvis & Abdomen
Jan 3, 2012 Diagnosed Gastric Cancer - Stage T2B
Jan 4th First Visit to Oncologist
Jan 5th Endoscope/Ultrasound
Jan 6th PET Scan
Jan 10th Chemo Port Installed
Jan 11th Echocardiogram
Jan 12th Chemo Class & 2 Surgical Consults for removal of stomach (total gastrectomy)
Jan 18th Begin CHEMO
March 27th Surgery- total gastrectomy. Diagnosed Stage 4- cancer was found to be metastisised (terminal). Feeding Pump installed into abdomen.
May 16th Resume Chemo
Aug 19th Remove Chemo Port & Feeding Tube from Abdomen
Aug CT Scan (every 3 months going forward). Results show minimal cancer activity (minimized by chemo)
Aug Oncologist takes leave of absence - and I have never seen her again - very disturbing
Sep 2012 Given my running shoes. Run baby run!
Nov 2012 Done with travel for a while, home for the holidays. Need 3 month scan. Have lost 1/3 my body weight (was on the thin side already).
Find new oncologist (like him) scan and bloodwork are good. Scan shows no advancement and bloodwork is damn near, completely normal!!!!
January 19, 2013 STILL HERE! 5'7" 100lbs and I am LIVING!
Feb 2013 3 month (routine) scan and bloodwork : Scan shows no signs of advancement. Blood work was amazing :)
March 2013 Vacation to Hawaii, exerted a lot of energy. Ate like crazy and Drank 1 bottle Riesling/day. Gained, size, weight and strength.
March 27, 2013 CELEBRATE! Year 1 without a Stomach. Winning!!!
April 1, 2013 Still Here! Kicking Ass at 111 lbs. Living everyday to the fullest.
April 26, 2013 Had a Complete Physical today with Primary Care Doc. Reviewed extensive bloodwork and urinalysis he ordered. Quoting him, "Amazing!", yeah, I know. 3 month scan & bloodwork results due at end of May. So Very Fortunate :)
END of SUMMARY
Lots of details left out... what would you like to know? Have you seen the stats? Ugly as hell... Live today while Fighting for tomorrow!
This comment has been removed by the author.
ReplyDeleteI have just been diagnosed with gastric cancer (stage IV) but to complicate even more, I have signet ring cells... I am looking for information, or anyone with same type of cancer cell. Very limited info out there for gastric cancer and even less for signet ring cell cancer. Surgery not an option because of cell type, will start chemo next week. I am told it is VERY aggressive and fast growing cell.
ReplyDeleteI did not realize it until I reviewed my tests... I also have signet ring cell cancer (mets). It is very aggressive and it appears that the patient is either deemed to old or the disease was caught too late. In otherwords, hesitation on the physician's side to treat it. They do not want to do surgery, just chemo and make you comfortable. I absolutely refused and explained something about my life, my strength and determination. Outside of fibromyalgia I was rather healthy before cancer. Having my stomach out was the only chance I had. I would not be here today otherwise. But if they know it has mets, then it is too late.
DeletePlease read my summary page for the calendar of my illness. The feeding tube, while it saved my life, it hindered my progression. Lots of tricks (recommendations) for those losing their stomaches too.
Please let me know what else i can help with and best of luck to you.
Fortunate One
I am unfamiliar with signet ring cancer. I do know that mine is very aggressive. The only chance i had was to remove the stomach. Unfortunately, when they did, they found it had spread (too late).
ReplyDeletethe American cancer society site may be more helpful. They break down the types of cancer pretty well. There are also bloggers there on the cancer survivor network.
I will keep my eyes open for you. Do what you can to get an aggressive treatment plan.
Fight for tomorrow!
Fortunate One
My mother was diagnosed with signet ring cancer stage 4 spread to peritoneal cavity on Dec 27th, so no surgery recommended. Doctors suggest palliative care so she started folfox chemo on the 17th of Janurary and so far so good not alot of side effects. She's 5'3 115 lbs and we have an appointment next week to meet with a surgeon who specializes in the hipec procedure.... hopefully this buys her some time.
ReplyDeleteThank you for sharing your story. I hope it helps others.
DeleteThey have started me on an aggressive chemo regimen of Epirubicin, Oxyliplatin and Xeloda...started 3days ago. Have loaded me with anti-nausea meds so havent had any problems with that; just extreme leg cramps so far. Treating me palliative care, no words of "currative" but trying to stay hopeful. Im only 46 years old and this seems to be mostly seen in older people---- no family history. Very frustrating.
ReplyDeleteI'm not familiar with "hipec" proceedure but will look into it.
Palliative treatment... Mentioned early on... So far,i have been fortunate. They did give me full treatment. Up until they found the metastasis. they gave me 12 more weeks of chemo then, and now i am on my own. We are all hoping for me to reach 50.
DeleteI am not sick... But it will be back... And then it will be ascites and hospice... Think I'll pass on that part.
Be strong, fight for tomorrow!
My mom's story/situation is very similar to yours. Black stools sent her to the hospital last February (2012), after running tests they said she had Stage II gastric cancer. After chemo and then chemo + radiation they performed a total gastrectomy. She was fine for 3 weeks, eating small meals throughout the day, then all of a sudden she started throwing up after eating. Now she can't even swallow water without spitting it up. Have you ever had that? She spits up clear mucus/foam saliva throughout the day even when she hasn't put anything in her mouth (I find that it happens a lot when she's anxious or thinking really hard). We just found out the cancer has spread to the area around her intestines (ascites)...stage IV. Only option they're giving her is more chemo at a much lower dose/rate because she's weaker than pre-gastrectomy. Have you been able to eat somewhat more normally since your feeding tube was removed (I'm assuming it was a j-tube)? It would be amazing if my mom could start eating again without the tube, I think she'd do much better. And thanks for sharing your story!
ReplyDeletePeanut, please read my post from March 27th as I celebrate 1 year without a stomach. :) I also updated my 'illness calendar'.
DeleteHow is you mom? Ascites :( to me, the end. The worst and something I hope to escape. Sincere best wishes to you and your family.
Fortunate One
I just went and read your post from April 1 and that's incredible! I'm so happy that you've made a turnaround. When I wrote my previous comment, the docs had given her weeks to live. They couldn't figure out how to get rid of her ascites. One day in March after getting a therapeutic Paracentesis to drain some of the fluid (3 liters!!) that was putting pressure on her lungs it just never came back! The fluid in her legs and in her abdomen was gone a couple days later too. Not sure if it was the chemotherapy that finally kicked in or what, but the fluid went away and hasn't come back since.
DeleteIn February, she has also started drinking tea made from lingzhi mushrooms (big in Japan) and every so often french green clay mixed with water. So we think that those in addition to the chemo are what helped keep the ascites away.
She has since started eating and drinking again! She's gaining a little weight each week it's been wonderful to see! She had a CT scan a couple weeks ago that showed a lot of the tumors are gone, but not all...we knew this already. We're just happy to see that she's eating. She also went the medical marijuana route for a short period of time when she couldn't relax and had a ton of anxiety. Thinking about starting her up on that again to maybe have her eat a bit more each day. I definitely think natural medicine is the best medicine! And our doctors have been really encouraging about using alternatives which is great!
Anyway, sorry for the long post. Just wanted to give you and any other readers an update! Never give up hope. <3
How are you doing fortunate one?
ReplyDeleteVery Well. And please tell me that your mother is resting comfortably, at a minimum.
DeleteMy post from March 27th celebrates 1 year without a stomach. :) I also updated my 'illness calendar'.
I have managed to gain weight! I have learned so much, I am so very fortunate to be here.
Your Mom?
How's your mom doing?
DeleteMy bff is about to have chemobath on her stomach lining. Last year she had 90% of her stomach removed. Cancer came back within 2 months of ending chemo.now its in her lining. As her friend, how do I express my love/concerns without sounding like she's gonna die. I just want to be supportive but not sure what to say. I really want to tell her all this stuff incase she doesn't make it but I don't want her to think I have no hope for her. Crying inside
ReplyDeleteI want to give you a well thought response. Do you know how she sees/feels about her prospects/treatment? Some people are rather private depending on how they feel ...
ReplyDeleteHi Fortunate One,
ReplyDeleteDid you say you had ascites when you had cancer?
Hello,
ReplyDeleteFor clarification... I am a survivor, because I AM still here! Not because i am cancer free. I am not sick (today) and show no signs of advancement (yet) but I am terminal.
I will die from this... Again, not today :-)
You provided no information. I do not know why you ask, nor who you ask for. From my point of view, ascites, is the end. Once you are there, it's hospice shortly thereafter.
These are My feelings and thoughts. I am not a health care professional. If you want to know more, please share some and i would Love to see if I can help.
Fortunate One,
beating the statistics...
Live today, while fighting for tomorrow.
Hello Fortunate One,
ReplyDeleteHope you are doing well. I would like to talk to you as My mother (53 years old) has been going through same condition.She has been treated for Signet ring cell carcinoma.
After upper endoscopy and biopsy report she has gone through by - pass surgery. Doctor has told us that its Stage 3 Stomach Cancer and cancerous cells had been found in 2 lymph nodes as well.
Total Gastrechtomy with removal of 21 D2 Lymph Nodes. (4th Jan,2013)
Became very very weak after 1st & 2nd Chemotherapy treatment (1st Chemo on 29th Jan, 2nd Chemo on 19th Feb)
My mom weight before Surgery was 42 Kg and now she weighs only 29 Kg.She is not able to walk and having only bed rest all the time.
I really need your help so that my mom gets recovered soon as my father got expired July last year. And I don't want lose someone who loves me most in the world.
Please help me!!!..
my email id - mukesh43for1@gmail.com
Pragmatic, I am sorry to hear about your mom.
ReplyDeleteWhat is her daily fluid & food intake like?
Did/does she have a feeding tube?
How is her attitude about her condition?
What are the doctors saying?
Hoping to help,
Fortunate One
Hi Fortunate_One!
ReplyDeleteI hope you are winning in your fight! Your last post indicates that you are doing great, keep it up!
My Mom (64 years old) has stage IV stomach cancer (diagnosed in June 2012). Surgery is not an option.
She already went through 3 rounds of ECF chemotherapy and one round of irinotecan.
What chemo regiments were you on?
Have you ever looked at "alternative" treatment methods?
Please email me at joseph.chk@hotmail.com if you prefer email.
Thank you and I wish you all the best! Keep fighting!
Joseph
Hello fortunate, still here?
ReplyDeleteHello fortunate, still here?
ReplyDeleteHello Fortunate,
ReplyDeleteI have stage 4 signet ring cell adenocarcinoma of the stomach, did 5 rounds of chemo but I decided to stop it, no more poisson. Im looking into herbal oor supplements to build my inmune system and kill the cancer, could you please help me?.
Thanks,
Dani
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