So far so good


(NJ)

I was diagnosed with stage 4 gastric cancer 13 months ago. Today i feel great. The initial diagnosis was quite a shock. Otherwise I was in good health and very active.

I had symptoms for two months before my diagnosis. Difficulty eating a preference for wet foods. I thought I had acid reflux but as it turned out it was much more serious. The disease spread to my brain before the initial diagnosis.

After two months of trouble eating I saw a gastroenterologist who prescribed a barium swallow test and an endoscopy. The barium swallow test indicated a growth near the junction of the stomach and esophagus. The endoscopy included a biopsy which confirmed cancer. The week before the endoscopy I began to have slurred speech. The day after the endoscopy I had a Cat scan. Later that day I developed nausea from headaches and vomited blood. I was taken to the hospital in an ambulance.

At the hospital the results of the Cat scan were coming in and things didn't look good. One tumor in my stomach and three more in my brain.

At that point I didn't think I would survive much longer.

Then things started to change.

The neurosurgeon's office showed me a 3D image of the brain and the tumors were 1-2cm each and locates in spots that could be treated. We scheduled emergency surgery to relieve the pressure from two tumors and the surgery went well. I survived it with full function. One tumor remained because it was difficult to reach with surgery so I was treated a month later with stereotactic radio surgery to eliminate the third tumor. Again I maintained full function.

Then I set about trying to eliminate the gastric tumor which the doctors would not treat while the brain was worked on.

Finally 7 weeks after diagnosis I received my first chemotherapy treatment- Folfox and Herceptin (the tumor was Her2 positive).

Two months later I had a petscan and the reading fell from 20 to less than 3. which indicates the medicine was impacting the tumor in a positive way. I continued this treatment for 7 months.

I saw 4 oncologists during this time. My primary oncologist was successful treating the tumor with the chemotherapy but my prognosis was still poor so I searched for a long term solution.

I saw 4 oncologists from NYC to Houston.

All the doctors agreed that surgery was the only cure. Some doctors recommended to stay with medicine and that surgery would be ineffective. They were hesitant to operate on the gastric tumor because I was stage 4. The other three doctors varied in possible surgical options but all wanted to wait from 6 to 12 months. Surgery would only be an option if the brain tumors did not recur and no new tumors formed.

I prayed for more time as I love my life. My prayers were answered. The power of the medicine worked. I had brain mri's every three months and I went nine months without the tumors recurring. At the same time my Pet scans were showing the tumor was limited to my stomach. One set of doctors felt that was enough to risk surgery to attempt a cure if that was my choice. I felt strong and wanted to improve my chances of a long-term solution. I had a gastrectomy three months ago.

It's been challenging learning how to eat without a stomach. But my quality of life is good and I would do it again.

I am in my 50's and have been able to work except for five weeks following the gastrectomy. I am back in the gym and feel like I am 35. With no detectable disease.

I hope this serves as an inspiration to seek the best medical care you can find. Take care of yourself. Keep a positive attitude. All we can do is give ourselves the best chance that we can. We all die sometime. Your time may not be for many years.

When I first got sick I put my things in order in case I only had a few weeks to live.

Now I am making plans months in advance with hope that they are achievable.

When I woke from the initial endoscopy more than a year ago the doctor said I should expect the diagnosis to be cancer the nurse wished me good luck and said it would be a long rode. She was right. There have been moments that were physically difficult and many more that were emotional difficult. But one thing has remained true.

I have always felt the love of my family and felt that life is precious and I am determined to enjoy it as long as I can. So far so good.

Comments for So far so good

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Thanks For Sharing Your So Far So Good Journey
by: Peter

Thanks for sharing your truly inspirational story. It really goes to show that stage 4 disease can be conquered and you are living proof of this. I hope that you go on to thrive for many years to come and wish you well with this. I am sure others will want to comment too. Good luck, Peter

Breast cancer survivor
by: Susan

Wow your strength and love for life is inspiring, having had 6 months of chemo and a year of Herceptin myself I know how incredible that medicine is ;).8 surgeries later I am almost 100% working full time and loving every minute ( just as I did prior to my cancer).Thank you for your story , sincerely Susan.

Connect
by: Jamie Jo

Could you please connect :jamiejoalton@gmail.com my partner has been diagnosed with stage 4 stomach cancer

Desperately needed motivation
by: Lenny

Your story is such an inspiration. I am in Nj as well and my mother has been diagnosed with stage four just this week. can email me to speak further? Would love to know which doctors you visited? Lennyrodriguez223@gmail.com

SO POSITIVE
by: ANN ENGLAND

THANK YOU FOR YOUR POSTING, I HAVE JUST BEEN CALLED BACK FOR INVESTIGATION DUE TO THICKENING OF THE STOMACH LINING. DREADING AN ENDOSCOPY, BUT HAVING READ YOUR STORY, I WON'T BURY MY HEAD IN THE SAND. LIFE IS WORTH FGHTING FOR AND YOU ARE AN INSPIRATION.GOD BLESS. ANN

So far so good update
by: NJ

Just to let you know I had another round of tests. Still doing well. Lucky to be able to say that - believe me I know.

I hope you are able to find some medical treatments that address your needs. Sloan Kettering in NYC, New York Presbyterian Cornell Weill Medical Center and MD Anderson all have very professional, thoughtful doctors who gave me the best available advice/care. There were others in NJ too. Too many people to thank.

Now that I reflect back on it. I just kept going - getting advice from multiple sources and making quick decisions to receive care when I had too. I'm not out of the woods I know but I do feel great after 15 months and feeling like this is more than I could have hoped for and it is what I hope for you too.

I chose the most aggressive treatments available. That is not always the way to go but it was my choice.

Still appreciate everyday while making the best of a difficult situation. Humble and thankful.


Best of luck with your journeys.

Update
by: Anonymous

It's been a couple months since I posted this story. Just wanted to let you know I had another round of good tests. So far so good.

How are you today?
by: Jess

How are today?

Reply to Jess
by: Anonymous

Hi Jess,

I'm still doing well. Symptom free and scans look good.


Wishing you the best.



Inspiration for me
by: Etti

I also had cancelled the stomach and went through a total gastrectomy total gastrectomy and had my total stomach removed unfortunately it's been almost2 years and I'm still unable to eat having lots of heartburn lots of pain and having dumping feeling perhaps you can give me some tips of how you manage with eating I would appreciate

response related to eating
by: So far so good

Hi, sorry to hear you are having trouble eating. Dumping syndrome is unpleasant I know. I have had it but not often. I find the key is not to drink much while I eat. Just sips. If I chew my food thoroughly before swallowing that helps too. I wait until about 20 minutes after I eat before drinking. The other key is to find foods that you eat well. For me its soup and fish and ice cream. Nutrition shakes like Enu and premier protein. Cream cheese and pudding and cereal. I eat alot of the same things repeatedly.

The main thing is to find a few foods that go down well and eat as much of them as you can. Just experiment with small portions of other foods until you are sure it will be ok. I avoid all carbonated beverages they give me problems. I limit bread too I can only have it in small portions. Good luck finding some foods you like and have small meals if foods you like. Best wishes.

Symptoms
by: Anonymous

Hi! Your story about how you survived stage 4 cancer is really heartening and inspiring and I'm so glad that you're able to count your blessings and lead a relatively normal life after remission (: May I know what you meant by "trouble eating"? Was it a case of early satiety and indigestion? Any vomiting/diarrhoea/blood in stools?

Thank you!

Boris
by: Anonymous

This is a nickname for my stomach cancer I was diagnosed 10 months ago after a lot of mishaps at the hospitals I didn't get any treatment for 3months it was a hellish time as they told me I only had 3/6months without chemo eventually I got 4months of eox chemo visious stuff tolerated it well after my 6th cycle had a scan results wasn't what we were expecting Boris hadn't shrunk & no sign of spread discussed with consultant about an op they say won't be beneficial to me as I would have to have a peg feed 70%chance boris would come back me & my family were left pretty numb with there decision so I was sent away for 3months then have to have a scan depends on the results whether I can have a different chemo as I can't have the eox as it would bump me off I haven't been well since coming of the chemo don't no if it's side effects after chemo or is Boris getting worse the waiting is unbearable your story was so good to read gives me some hope. One anxious guy.

My everything has stage 4 stomach cancer
by: Gia

My little brother is 33 years old and was just diagnosed two weeks ago with stage 4 stomach cancer adenocarcinoma (sp?) poorly differentiated. He is in otherwise good health. I don't understand why he has been given a 4% chance of survival. His cancer has only metastasized to one lymph node outside the stomach. The oncologist Dr. Ajani from MD Anderson has not given my brother much hope but is still going to treat him as if it's stage 3 cancer and curable. They are going to 8 weeks of chemo and then radiation. And if survives all that then maybe stomach removal. I understand statistics are against us but since the cancer has not spread to any other organs yet why is the prognosis still so grim?

Reply to trouble eating
by: So far so good

The trouble eating that I have is mostly just trying to get enough food to maintain my weight. I've rarely had vomiting that's happened two or three times and I am not sure why it happened. But its rare. No real problems with diarrhea or other issues. I just need to eat frequently and high calorie foods. So I have nutrition shakes, my favorite foods and I just sip drinks while I eat. I drink glasses of liquids separately. Eat and snack often. If a food or drink is difficult then I just avoid it. As long as I remember the rules it seems to work well.

Response
by: So far so good

I meant that I have trouble eating enough to maintain my weight. I need to be diligent about eating frequently. Without a stomach I fill up quickly then need to wait to digest some then I can eat again. Frequent small meals. Vomiting, diarrhea are not problems. I have experienced them 2 or 3 times. I just fill up quickly.


Reply to anonymous.
by: So far so good

Sorry to hear about your condition. I feel for. You waiting for treatment is so hard to do. Good luck with your tests and seek second opinions when you feel the need for something different. I wish you well, rooting for you.

Response to Gia
by: Anonymous

Dr. Ajani is well respected and quite experienced. It seems he may be setting some realistic expectations even though it is hard to hear. This disease is sometimes cured. He knows that. He will do what he can to give your brother the best chance he can get. Your brother may be one of the lucky ones. He is young and that helps them offer aggressive repayments like surgery. Few are cured without surgery so I hope all goes well with chemo and radiation and that progresses to successful surgery. From what I have read chemo before surgery helps your chances after surgery. Best wishes to your brother for a full recovery.

Stomach Cancer
by: Allan

Very inspiring,just two days ago i obtained the biopsy results of my dad,and he has the same cancer that you had in the junction of esophagus and stomach,right now we are lost we dont know where to start from, the doctor suggested he be inserted with a stent as he has lost alot of weight(@43kgs)he rarely takes any meal ,probably just a cup of porridge..any advice is appreciated.

response yo Allan
by: Also far so good

Sorry to hear about your dad. The best advice I have is to get care fast and feel free to see more than one doctor to get different perspectives. Love your dad and support him the best you can. The rest is out of our control. I hope he responds to treatment and you can enjoy him for a long time. Best wishes.

Heart wrenching...
by: Gia

I'm praying for you all. Cancer is a horrible disease. One day my little brother was at the prime of his life. He was among NY bestsellers list, had a baby with his beautiful wife and then poof he gets diagnosed with stage 4 stomach cancer and his the worst kind of gastric cancer because it's poorly differentiated and now behind the renal vein....My whole life has changed. I only have one sibling, I thought I'd at least have him in my life. We are only 3 years apart and were both busy with staring our new families. I took these past 11 years, since I left my parents home and my brother, for granted. I only realized the gift I had in my little brother about a year ago...bottom line is if you yourself are living with cancer or if it's a cherished loved one-take advantage of the time you have and spend it with him/her. I myself am living in PA with my husband and 3 kids while my brother is in Texas. I'm seriously considering quitting my job and moving myself and kids to Houston to live with my brother. This would be against the advice of my parents and husband. However, life is short and I want to do what I can to be with my brother. I hope you all get to make the most of whatever time you have with your loved one. -God bless 🙏🏼
Sent from my iPhone

Learning to live without stomach
by: Etti

My name is Etti 2 years ago I was diagnosed with cancer of the stomach it's been two years of real real hell ha it affected me emotionally ir it affected me and physically I spend most of the hours vomiting and screaming for help to God it was quite difficult I was treated with chemo and variation I'm now left with major depression that I'm trying to find the proper medicine to overcome day shock of the body but I'm grateful cause I'm much better I can walk a little bit more I can stand for longer time I found it I have more energy that I had for the past 2 years I'm at my area 60 and have lost my job due to my illness I'm hoping to be able to exercise again as I used to and to be able to find some form of a job cuz I think the more I associate with people the better I feel I do have vomiting occasionally and food stuck in my throat I guess it took me a long time to learn the rules I do eat a lot of ice cream and liquid food food occasionally I try solid food sometime I drive and I end S vomiting in my car I just have to be more careful I found it I do have to eat often I feel like very fast and I get hungry fast I'm very picky with my food and get very tired fast of the same food I wish I had a support group in my country but I'm glad I have this program thank you everyone for sharing and for responding to my ad looking forward to speak to someone or someone who knows of a group phone Bridge support group cancer of the stomach online I forgot preciate if someone can give me that information thank you so much for being there with all of us and hit the road

inspiring story
by: Anonymous

Hello thank you for your article. I am currently having poor appetite and your site came up on my Google search. I don't believe I have cancer but read your story and the comments of others. I am glad you are still here and everyone is battling on. I have lost many relatives and friends to cancer of all types. Its terrible and causes so much pain. Hang in there guys, you can do it!

Response to Etti
by: So far so good

Hi Etti,

Sorry to hear you are having a difficult time. Just wanted to say. I wish you the best. I hope you find a good local support group.


Response to Etti
by: So far so good

Hi Etti,

Sorry to hear you are having a difficult time. Just wanted to say. I wish you the best. I hope you find a good local support group.


No options
by: Norma

I'm stage 4 they told me today I had no options but chemo but it's not working it continue to spread. Can you give me suggestions I'm totally in shock I have had the total gastrectomy, followed by chemo I need to believe God for a miricle. This doctor says I'm gonna pass away from this and chemo will buy me time. Buy me time.

Response to Norma
by: So far so good

Hi Norma,

That's disappointing to hear. It must be hard to get that news. After all you have been through. There is no magic formula that I know of. You have to fight each battle as it comes. You didn't mention where the recurrence is located or if it is one or more tumors. Sometimes we need to focus on the problem. Just because a doctor doesn't offer a solution doesn't mean a different doctor will see it the same way. If the recurrence is isolated you could ask them to treat it aggressively including surgery. I would.

If you are really limited to chemo after getting other opinions then you could ask for immunotherapy. Keytruda if you test high for pdl1. The drug company may make it available as compassionate care.

Enjoy your time. Appreciate everyday. Pray for more time.

Best wishes for recovery and the ability to enjoy your time.


Norma please stay strong
by: Gia Mohar

Norma, my little brother is fighting stage 4 stomach cancer too. Immunotherapy won't work for him, nor herceptin. Hasn't had surgery yet. I wanted to suggest a different combination of chemo drugs. Some people take three at a time. And have you tried radiation? What about proton therapy? Don't lose hope, I'm sure there are other things you can still try...I'm praying for you😍🙏🏼

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