51 Year Old Mom Diagnosed With Stage 4 Stomach Cancer...Please Help

In December 2005 in the midst of my 18 month tour in Iraq, I had this horrible feeling in the pit of my stomach that something was wrong at home. You see, my mother and I share this special connection like no other. We have a bond so close it is indescribable. I called home and found out that she had recently been diagnosed with stomach cancer. She is 51 years old, married with three children, ages 27, 26, and myself 23. I felt like my world had ended. Within 48 hours I was on a plane back home to Hawaii. My mom had all the routine test done, CAT scan (Negative), Blood work / Cancer Markers (all within range…normal), EGD (Showed Volcano like tumors, positive) and a PET scan which showed the cancer activity in her stomach. The Doctors where quite optimistic thinking they would be able to do surgery and have either a partial stomach removal or full stomach removal. They went in, and found that the cancer had spread to the outside of her stomach and to the lower portion of her esophagus. The cancer was in the fatty tissues that surrounded her stomach and her lymph nodes. They then closed her up and marked her as inoperable. My mom spent a few days in the hospital recovering from her surgery and met with her oncologist during her stay. He looked me straight in the eye and said your mom is stage 4 Cancer and has about a year to live…a part of me died that day.

The surgeon has chose to leave her stomach in, with the cancer believing that having her stomach removed would have been too harsh on her body and she would not be able to endure chemotherapy and radiation. After healing from the surgery my mom started to undergo Chemotherapy. Her Chemo consisted of: Xeloda 3 times a day, every day, Oxoplatin & Epirubisin every three weeks for 9 weeks. After she completed this round of chemo she redid her cancer screenings. CAT scan and blood work were negative, and although the tumor had shrank and seemed to visually look good in her EGD the biopsy and PET were still positive for cancer. The cancer had stayed contained in her stomach and had not spread to any of her other organs. Our family was devastated we had wanted so bad to have heard “THE CANCER IS GONE!!!” Her oncologist then started her on 25 treatments of radiation and wanted her to continue taking her Xeloda 2 times a day. Yesterday Wednesday we have just finished her 25th radiation treatment. We will wait about a month to a month and a half to repeat her test.

Some of the symptoms my mom is experiencing now is, intense pain throughout her body, she describes is as feeling like she has the flu (body aches), severe esophagus spasms. She describes it as every time she swallows her esophagus contracts and wants to push the food back up. She is severely nauseas although she has not vomited once throughout this whole ordeal. Her hair thinned out quite a bit but she never lost it all. This whole ordeal has been quite hard for her, she would love more then anything to have someone to talk to that has gone through the same experience and also has stomach cancer. She goes to cancer support groups but has yet to find another with her same diagnosis. I was hoping that I could find someone for her to talk to so she doesn’t feel so alone in this process. This whole experience has been quite a rollercoaster….the good days are great and the bad days are horrifying. She has lots of questions that she would love to ask. My mom has the utmost determination and will power to live, she is not ready to let this horrible disease to take over and neither is her family.

So right now we are in this limbo of the unknown. We are waiting to see what is going to happen next. If anyone could please write me back I could pass the info on to my mom and maybe swap email addresses for the emotional support and questions. We need all the support we can get right now; this terrible news has left my family feeling quite broken and devastated. I don’t know what to do; I am so very scared and alone.

A hopeful daughter…
Aislinn

What Cancer Cannot Do
Although great progress has been made in treating cancer,
recovery can be long and painful, and some people
do not survive. Yet cancer is so limited...
It cannot cripple Love,
It cannot shatter Hope,
It cannot corrode Faith,
It cannot eat away Peace,
It cannot destroy Friendship,
It cannot suppress Memories,
It cannot silence Courage,
It cannot invade the Soul,
It cannot steal eternal Life.
It cannot conquer the Spirit.

Author Unknown

Dear Aislinn, I've been battling cance since 1998. I had half of liver removed and my galbladder. It has since mets to both lobes of my lungs. I had chemo for ten months and a reduction in tumor sizes occured. I am just watching/monitoring growth by way of ct scans every 2-3 months. The only thing I can say from reading your mail, is that it appears you have a very proactive Oncologist wich is great. My experience with cancer has been an emotional roller coaster for my family including my 27 year old daughter who is also in the Service and came home when the doctors thought my tumors were begininng to grow more rapidly. For some reason they slowed done and now the doctor says I'm hanging in there as stable. He did remind me that no cure exsist at present but was encouraged with what my results have been to date. Aislinn, during my and still continuing my journey of living and fighting cancer I can tell you your Mom is probally more worried about you and the family more than herself. "What Cancer Cannot Do" is what I focus on and have been since 1998. I'm retired from the service myself and was working a very active second career when Cancer took me by surprize. Well, I'm up and running again starting an at home job> Actually begin my 5 week training on Monday. I choose this avenue as all the chemo caused a lot of neuropathy in my hands and feet. That is something I'm sure your Mom will be feeling. You said your Mom wasn't sleeping well but pain meds seem to be working. She might want to ask for a prescription of Clonazepam. I take 1mg as needed for anxiety and at bedtime. It really helps slow the mind down and lets you get some decent rest and sleep which your body really needs to help fight back. Well, As far as being nauseas, I found if I take med every 6 hour during the day time I felt great. I did not wait and take as needed a little hint from my Oncology Nurse. Well I have rambled on, I don't know if your Mom and I have the same type of cancer but only in different organs but the treatments, chemo and radiation are the same. I have held of on radiation for right now. Will be my next line of action with different type chemo. But until then every ounce of stength physically and mentally I'm going to start working again and will do as long as the Lord will let me. Aislinn, I tell my Daughter Rachael smile be happy and take it one day at a time; despite what happens my cancer will never break my love and spiritual bond and the "worst" that could happen is that I would be at peace and not in pain. Then I jokingly tell her, I would be watching over her so she better behave herself. Seriously, I pray for your Mom and Family for a positive outcome and I would be more than happy to chat with your Mom anytime if she would like to. Again, God Bless you all and keep on surfing.There is a wealth of infor out there! JeffG KS

Dear Aislinn,
after reading your post, I couldn't help but feel the need to
respond... this is my first post ever on any cancer message
board. In a way, I have been suffering silentIy feeling that no
one really understands the way I feel. Like yourself, I have this
amazing bond with my mother which can not be described by
words. I too am a hopeful daughter...

My mother (49 yrs) has stage 4 stomach cancer diagnosed last
year. Her cancer had spread to ovaries, and whilst undergoing
an operation to remove those tumors, the stomach cancer was
found (inoperable). My mums' diagnosis has affected and
shocked the whole family tremendously... we are all very
scared. Scared of the unknown and uncertainty. It is such a
cruel emotional rollercoster ride, one that you want to get off
so badly but can not.

Soon after my mom's recovery from surgery she started 6
months of chemo part of a clinical trial. It was a combination
regime with the drug taxotere. My mum responded really well,
with one tumor completely disappering and the other shrinking
to only about a third of its original size. She did not get many
side effects, just hairloss and fatigue and her general health
was terrific. I remember so cleary waiting for the results of her
last scans, hoping that all cancer would be GONE, however it
did not... it grew a little. I felt so sick and dizzy, feeling that
does this now mean there is no hope left? The cancer is still
confined to the stomach only. That was 3 months ago... since
then my mum has had 3 month holiday overseas and has just
returned for another CAT scan, we get the results in a week. I
have been so worried. My worry over the last year or so has left
me so unmotivated. I have spent ridiculous amounts of hours
over the internet reserching this illness almost to the verge of
being obessed... an obession fuelled by the desperation to find
stories of hope.

We all try to take everything one day at a time, and yes when
days are good, they are really good... we almost forget about
mum's cancer. But when days are bad, we ask ourselves so
many questions... questions we don't have answers for, but
most of all WHY??? I suppose everyday is always an unkown...
an unknown for all of us really.

All I can say is that every cancer patient is an individual and no
one can ever predict exactly what ones outcome will be. (We
refused to ask the doctors "How Long?"). Yes statistics give you
a snapshot of what the prognosis or outcome is likely to be,
but remember there are obviously long term survivors of stage
IV cancers... (hence the statistics) people have done it!! And
everyone has heard of the "unlikely cure"! Miracles do happen.

I'm glad I came across your post Aislinn... I've always been
really hesitant to write in these forums, feeling that if I do it
makes this nightmare more real. I feel the pain your going
through, but everyday that our mothers are here is hope we
can hold onto.

Heres hoping that our mums can be "lucky ones" and go on to
defy the odds!!

Take care...

Eukie

hi, my name is corina, my aunt was told in feb of this year that she has stomach cancer and that they were going to remove part of the stomach, when they opened her up they saw a mess and they did not closed her up until they were done removing every cancer they could see, they removed the whole stomach, the spleen, half of the pancreas and a whole bunch of lymph nodes, this was about 5 days after the diagnose, in 4 weeks she started quimo, once a week, she has had 4 or 5, she has to do this at least for one year, doctors said the cancer was about 4 years old, and she would have died within 4 month, the key of her success has been a combination of good doctor, her family and friend beeing there for her, pryers, and the quimo.
you need to take your mom somewhere else, get another opinion, if your mom has cancer 4 with metastasis she does not have a year. do it now.
don't care about money, money is just money.
my aunt lives in venezuela, her over 4 hour surgery was done in the "centro medico de caracas" in caracas by an exelent team of doctors, the surgery and the 7 days hopital cots the about 15,000 dollars, i live in indiana and that's how much my out patient knee surgery was 15,000.
the quimo is a lot of money because the quimicals are brought from germany, the quimicals are cleaner and better than the ones from us. the europeans are so much more advance in quimotherapy that their patients dont even loose their hair, my aunt only feels weak for about a day, then she is good to go. she also just finish a week long therapy called immunetherapy, she spent one week in a place with her husband and 9 other couples, whith one on one atention from doctos and psicologits where they learned how to live with cancer, how to eat, realxation, concentration, meditation, how to make your own body fight cancer and how with the right foods and controling stress you can keep your immune system working properly so that good cells can kill the bad ones.
but i think the most important thing is that my aunt never has said oh i am going to die. from the very beginnimg she was ready to fight and to live, she is also 51 like you mom, she will be 52 sept 12 2006. please dont give up.

Aislinn,
God bless you, your family and ecspecailly your Mom. In November of 2005 my Dad was diagnosed with gastric cancer the same as your Mom. All the test were done, took them two months to get him into the operating room which is another story in itself that infuriates me as why they felt they needed to wait two weeks in between the tests to do another test. When they finally did get him into the operating room it was too late because it had spread to his lymph nodes (inoperable). The only thing they gave him was a feeding tube directly to his stomach.

Thank God for the feeding tube though because he has been unable to swallow even water for a while now; at least from what I get from you your Mom is still able to eat. Since the inoperable operation my Dad has had chemotherapy and did not have any real problems until the end of his treatments when the doctors were giving him chemo in their office plus a 5 day chemo via IV tube. My Dad never really got sick during the treatment which I think has to do with the feeding tube. After the treatment ended there was no change found with him, good or bad, and that tore me up sooooo much. Since then he seems to be getting worse, I see that it is only a matter of time before we loss him. For Easter my Dad was in the hospital; he was in there more days than after he had the operation. Last Thursday he just got back home from the hospital again where they were giving him pain medication and right now as I’m writing this my Mom is taking my Dad to the ER because he can not stop vomiting and he started vomiting purple. All of this vomiting and he has not had chemo radiation in a month and a half and they are giving him pain medication at the hospital and for home, that just tells me how bad this is getting now.

A little advise for you; try to stay strong for your Mom and your family. If your Mom starts vomiting and can not stop bring her to the hospital and ask them to have a drainage tube put into your Mom’s stomach so the bile in the stomach can be released; I just found this on another message board that helped another girls Mom and I suggested this to my family to bring up at the hospital today. Keep your hope and faith that she can get better but at the same time prepare yourself for the worst because I’ve found that people with stage 4 have only a 7% survival rate; I hope she can be of that 7%!!! This is a bad emotional rollercoaster ride that you can not escape. The only thing you can really do is hope for the best and enjoy the time you have with her right now and not worry about tomorrow; that is what I am doing because I want to build memories of him that will last a life time and not have any regrets in the end. Your Mom is going to have pain, a feeling like the flu and esophageal spasms because that is part of the chemo and the cancer doing its work on the body.

It has been a very tuff road for my family, as I imagine for yours. I live in Puerto Rico which makes it that much more difficult for me and I do not have the opportunity as you to see him everyday if I so please; I know exactly what you are feeling and going through since I feel the same as you. I am hoping that he can hold on until I can transfer up there with my job; we’ll have to see. There are days that it makes me so sick just thinking about him and me not being there that I don’t feel like eating or doing anything, like I’m in a dream world. I am here with no blood family, only my wife and I and I’m going nuts and am SCARED OUT OF MY MIND AND FEEL SO ALONE!!! If you ever want to talk with someone I am here; you can email me if you choose to at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. Take care and God bless.

My 57 husband has been diagnosed with stage 4 stomach cancer. He is hoping to be part of a clinical trial or begin chemo within the next week or so. Originally we had been told he would have a gastrectomy but have now been told that the cancer is too far advanced.
Does anyone have any success stories about treatment/cures???
His oncology surgeon has told us that if chemo shrinks the tumors he will consider stomach removal at that time...his chemo doctor today said he couldn't see that would be possible. Is one overly optomistic or is the other a pessimist???
No one will say they are treating him as a palliative patient, but I suspect they are.
We are searching the internet for hope and treatments (like everyone in our position). Has anyone tried or heard of Protocel treatment? If so what was their experience with it.
God bless to all...

Dear Darlene B,

I have seen a few clinical trials being done on gastric cancer but either they were phase 1 trials or they were closed already or they did not look promising. But there are new clinical trials every day. A web site to look up clinical trials is at:
http://www.cancer.gov/clinicaltrials

I would like to answer your question about surgery. Removal of the stomach, called gastrectomy, is only done if, at the time of diagnosis, the cancer is confined to the stomach.

On diagnosis, 8 out of 10 gastric cancer patients are found to be at stage 4. This is because there are usually no symptoms that would prompt people to seek out medical attention when the cancer is at an early stage. These individuals would not benefit from gastrectomy, even after chemotherapy.

Chemotherapy can shrink the tumors and even make them so small that for a time the tumors do not show up on scans. But it would be exceptionally rare that chemotherapy could eliminate the tumors; usually after chemotherapy is completed the tumors reappear.

In patients who are at an early stage, removing the stomach could be curative and that is why it is done. If the cancer has already spread beyond the stomach, surgery would not be curative as there are already tumors elsewhere. Chemotherapy is done to extend lifespan in these cases.

On a separate note, there is a bacteria called Helicobacter Pylori that is a risk factor for gastric cancer. If your husband has it, and that is exceptionally likely, you and your family should be tested. There are two simple tests for H.Pylori, one is a breath test the other is a blood test. If your husband, yourself or your family are positive for it, antibiotics called a "Prevpac" can cure the infection. Here is a link to information about H.Pylori:
http://en.wikipedia.org/wiki/H.pylori

and here is a link to information on family and H.Pylori and your being at risk:
http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Family_Hi

I wish you and your husband the very best of luck.
-Amnia

Protocel is listed under dubious treatments at quackwatch. Here is a link:
http://www.quackwatch.org/00AboutQuackwatch/altseek.html

My own opinion:
I know very little about Protocel. But I do know about human nature. Wherever there is a disease that has very little hope, there will be people to take advantage of others for monetary gain.

For example, the before and after pictures seen on hair restoration products advertised on TV - Apparently the "after" pictures look better but not as a result of the cream - these people had hair transplants. Similar scams for weight loss and exercise products.

The people that offer Protocel are just ordinary people with no medical, chemical or biological training. They just threw together chemicals with fancy names and wrote a convincing web site about them, complete with explanations about why, even when the CT scans show the cancers getting larger, you should continue to take their product because it is "working." They did not do any controlled clinical trials to test their product.

There is something called the "placebo effect." I am sure there are people out there who took Protocel and feel strongly that it helped them. It is my opinion this is due to the placebo effect. Here is a link about the placebo effect:
http://en.wikipedia.org/wiki/Placebo_effect

Hi there --

I would very like to talk with you. My mother has stage 4 stomach cancer. It has been difficult and i wish this upon no one. I felt your pain through your letter.

Blessings to you and your family,

Carla

Hi Aislinn,

I read your post and was so touched and saddened by what you and your family are going through. I in almost the same situation. My mom, at age 55, was recently diagnosed with stomach cancer. The doctors found this out while doing a hysterectomy for an ovarian mass, which was thought to be benign. Little did they know that the gastric cancer had spread to her ovaries. We were hoping that they would be able to do surgery to remove part or all of her stomach, but after a gastrocopy, were told that it is inoperable. We are devestated as I think that would have given us a chance at survival.

My mom is expected to start her chemotherapy, which has been deemed pallative care, next week. I can't tell you how depressed I am and never thought that this would happen to my mom, who is the picture of health.

My experience with these posts is that people don't usually respond, but if you would like to, please feel free. I have found it impossible to find someone who is in a similar situation.

I will pray for you and your family and wish you all the very best. Remember that good things can happen when we least expect them to. Turst me when I say that I know how hard it is to stay positive, but we have no choice but to hope for the best.

 Good luck!