CSN Login
Members Online: 2

Looking for survivors of stomach cancer

dustmagnet7
Posts: 27
Joined: Oct 2010

After doing battle with stage 4 stomach cancer for the last 8 months, I'm now cancer free. I was just hoping to hear from anyone who has been able to beat a stage 4 diagnosis and live a nice, long time. From what I understand, its not a common thing, but I've never been one to rely on statistics alone. I'm a survivor and plan on being one for a VERY LONG time.

jenene
Posts: 40
Joined: Oct 2010

Did it spread anywhere? Was it just chemo? My husband is currnetly battling stage IV cancer that has spread to his liver. I would love to know the details of your survival and hope his will be the same.

dustmagnet7
Posts: 27
Joined: Oct 2010

When I was diagnosed last febuary, my cancer was stage 4. It had taken my entire stomach and spread to my small intestines and there were several hundred small masses in my omentum (thats the fatty stuff that holds your insides together). The tumor was so advanced in my stomach that it caused fissures in my outer stomach wall and internal bleeding. Severe anemia is what got me in to the hospital initially, then after 5 pints of blood, they scoped/biopsied my stomach and found the cancer. Because of the bleeding, I went through surgery first. They removed my entire stomach, two thirds of my small intestines, a small section of large intestine and a lot of the omentum. After surgery, they gave me about 3 weeks to heal up, then I went straight into 21 weeks of the most brutal chemo my oncologist thought I could survive. I'm 36 years old, so they figured they could give me a VERY tough course...and it was. I went through 7 cycles (three weeks each) of cisplatin, taxotere and 5-FU. It was initially going to be 8 rounds, but my side effects became too severe (mostly weight loss and neuropathy) and the treatments were working. Over the course of chemo, I lost about 70 pounds (I started at 185lbs) and the side effects were terrible. Towards the end I felt as though I knew how victims of torture felt...21 weeks of scheduled poisoning sucks. Anyhow, I survived the treatments and have had 2 clear scans and am cancer free. Now, I'm in the process of re-building my body. Trying to put weight back on, which is very difficult with no stomach. Over the course of all this, I've learned tons of tricks for survival and would be more than happy to share if you have any specific questions. I will say, that if it weren't for the unbelievable support and strength of my wife and daughter (and all our friends and family), I never would have done as well as I did. Not to mention my willingness to do whatever it takes to survive. Besides the conventional treatments, we tried everything from diet suppliments to some foul tasting brew made by a Chippewa Medicine Man in Canada. Please, feel free to ask questions...I'll try to answer as best as I can. Keep fighting and when you think you've gone as far as you can...push a little farther. Best wishes to you and your husband.

Adi-Dad
Posts: 3
Joined: Nov 2010

Mr.Dustmagnet7

Its so inspiring to hear that you defeated the deadly desease and its a hope for me too as we recently (still in complete body CT scan need to done) come to know that my dad has stomach cancer in stage 3B (cancer is due to poorly spread adenocarcinoma and infected stomach and Lungs - some water in lungs). Doctors suspecting that it might have spread more seriously they are in the process of testing the blood samples. They told that dad will be treated through Chemothereapy pnly and he is 54years old and so feared.

As he is unable to eat solids, we are giving him fruit jucies and milk. But I am concerned that his diet is not that nutritious and not that high in calories...not even full vitamin servings.

Can you please suggest me the liquid diet that you took to battle the weightloss. My dad is unable to sleep on bed as the water in lungs not allowing him to breat...he is sleeping by sitting on sofa....If you have any tips in this paritcular case please let me know.

Congratulations and I look for your valuable advice. Will keep in touch with you with my dad's problems.

lunatic525@aol.com
Posts: 1
Joined: Jan 2011

I had almost all my stomach removed, and it's been tough to eat. My Dr. put me on Megestrol ac40mg/m take it twice a day. It does help. It's very hard to put on weight but little snacks during the day is good. I have a tendency to eat fast, not a good thing. I used to weigh 178 before surgery now I'm at 88 lbs. It's tough but don't give up. Our Lord watches over us. Take care and God Bless

MrBBarc's picture
MrBBarc
Posts: 3
Joined: Dec 2010

Thats a hell of a story, but I am so happy for you. It's quite similar to mine, although luckily I only had late stage 2 cancer (which was tough enough).

Do you know if your cancer was genetic (HDGC - hereditary diffuse gastric cancer)?

Please, look me up on Facebook, so we can exchange recipes! search under: "brett's recovery from gastrectomy & stomach cancer". I would love to hear from you regarding your recovery!

Cheers, Kia Kaha!

amyinsc
Posts: 1
Joined: Jan 2011

Hello Kia! Let me tell you good news. I'm a 30 year stomach cancer survivor. I had a total gasterectomy in 1981. I have a problem keeping my weight up, but other than having to eat and eat that's my biggest challenge. I do have B-12 shots once a month and that will be FOREVER. I hope sharing my case will give encouragement to you and others. I wish I had had access to a support group like CSN in 1981. I wish you and others well. Talk later! amyinsc

JuneA
Posts: 1
Joined: Jan 2011

CONGRATULATIONS!! My 29 year old niece just had a total gastrectomy with lymph node debulking on the 26th! Hers was stage 4 responded GREAT to chemo and was able to have the resection. What stage were you and did they take lymph nodes??? Any diet suggestions? She is a determined beautiful young lady!
JuneA

liveinhope
Posts: 83
Joined: Mar 2010

Hello amyinsc,keep coming on this site.Its encouraging for us,I'm a 18-year Breast Cancer survivor but here for my son who was diagnosed with diffuse gastric cancer at 30 about 18months ago.He is doing well after total gastrectomy with no weight loss in the last one year.he does not take any special protein drinks;just normal food very very frequently in small amounts.His diet is largely vegetarian with a lot of whole grains,nuts,lentils,brown rice,fresh vegetables and home -made yoghurt.He avoids processed foods,sugar and refined flour(which means he misses his sausages,bacon,salami other than stealing an occasional bite!!)Good wishes

libragirl
Posts: 5
Joined: Feb 2011

Hello liveinhope, your post struck me because my 37 year old brother was diagnosed with diffuse stomach cancer in November of 2010 and is having a really hard time. He had 4 chemo treatments, the first 2 with one course of treatment and the next 2 with another. They changed it because he was building too much ascites that was causing pain and the doc found this to be evidence that the first regimen wasn't working. The second regimen looked promising (after they inserted a catheter for him to drain fluid daily) but I'm writing this as I sit next to him in the hospital, due to an infection from the catheter and more fluid buildup with some pain and compression to other organs. He uses oxygen 24 hours since the fluid has suppressed his ability to breathe on his own. In addition, this may be hereditary diffuse gastric cancer so he had genetic tests done this week and the results will be ready in 2-4 weeks.

What stage was your son diagnosed in? Did he have chemo before or after surgery? My brother has stage 4 and surgery wasn't given as an option. Only chemo. Where was your son treated? As you can imagine, my family and I are devastated!

I welcome other comments and suggestions for treatment, doctors, hospitals, etc.

Thanks!

jenene
Posts: 40
Joined: Oct 2010

My story is so similar to yours. My 38 year old husband was diagnosed wth stage IV diffuse adenocarcinoma in October 2010. He got mets to liver, bone and abdominal lining. They also thought is cancer may be hereditary and want my daughter tested. We went through weeks of ascites but finally they put him on avastin and that seemed to stop, at least clinically anyways. We went through 1st and 2nd line treatment but now good news from that. We started third line treatment last week. Although my husband is done with chemo now. We are going to let nature take its course. I know the end is near. I wish your brother all the best. I know how hard this is watching someone you care for waste away. Hopefully they can find a good treatment for him that will work.

libragirl
Posts: 5
Joined: Feb 2011

Hi Jenene, sorry to hear about your situation. It's such a difficult and frustrating experience. My brother is in ICU at the present time due to high levels of carbon dioxide! I still hope for a miracle and I am now hoping for a miracle for you. I really hope to hear from liveinhope about her son's experience. I know it's difficult to speak of this but what a great forum to discuss this! All the best to you and your family.

libragirl
Posts: 5
Joined: Feb 2011

Jenene,I just re-read your response with my other brother. You mentioned that your husband is off chemo though his 3rd line of treatment started last week. Has he not started his 3rd line of treatment or did he decide against it?

fsp220
Posts: 3
Joined: Oct 2010

I am grateful for your comments. Even the strongest, most positive people get weak sometimes. I like you am relatively young. I was diagnosed stage 4 in march 2010, had surgery in June, finished combined radiation and chemo in December 2010. i am 39.I was a body builder, grappler and mixed martial artist. I am 5'6" and used to weigh 200 pounds--now I have been reduced to 130 pounds up from 117! Please tell me how I can gain weight. I had a total gastrectomy and the absorption difficulty from what I understand is the problem.

thank you and God Bless

liveinhope
Posts: 83
Joined: Mar 2010

Hello,my son had a resectable tumour detected in July 09.He received pre and post operative chemotherapy-5FU,epirubicin and cisplatin in the early cycles and taxotere,cisplatin and 5-FU in the post total gastrectomy cycles.We live in Pune ,near Bombay in India where he has been treated.We were fortunate to find a wonderful doctor at the Tata cancer hospital,Bombay.
I wish all strength to you and your family.Best wishes to your brother

fsp220
Posts: 3
Joined: Oct 2010

I am grateful for your comments. Even the strongest, most positive people get weak sometimes. I like you am relatively young. I was diagnosed stage 4 in march 2010, had surgery in June, finished combined radiation and chemo in December 2010. i am 39.I was a body builder, grappler and mixed martial artist. I am 5'6" and used to weigh 200 pounds--now I have been reduced to 130 pounds up from 117! Please tell me how I can gain weight. I had a total gastrectomy and the absorption difficulty from what I understand is the problem.

thank you and God Bless

FSP

clm061794
Posts: 1
Joined: Nov 2010

i have a 66 yr old grandfather that was dignosed with stomach cancer about 3 years ago. hes been highly depressed and i was wondering if you would be willing to be an inspiration to him. if you would be willing please contact me at c.mcferrin@yahoo. i would be very greatful.

courtney

frank66
Posts: 5
Joined: Mar 2010

I am a 44 year old stage 4 cancer survivor that was diagnosed in February of this year. The cancer was in the upper stomach and spread into the GE junction. From the GE junction it worked its way into the lymphatic system, especially in my abdominal cavity. Hence the Stage IV diagonsis. I had trouble swallowing for about two months before diagonsis, that was about all the warning I had.

I underwent six cycles of EOX chemo as the docs (from multiple hospitals) told me I was too far gone for surgery and or radiation. By June I was getting clean Pet scans and thought I may be beating this dreadful disease. The docs were very catious and told me that this is not that unusual, especially when you react well to oxaliplatin. As it was explained to me, this drug gives you a good initial response but then it is also common for the cancer to come back. That's exactly what happened, and in early October, I relapsed. The Pet showed abdominal lymph nodes and possible pancreatic adenocarcinoma. So now I am on an absolutely brutal chemo called fulfuriox (5FU, oxaliplatinim and irinotecan). I'm praying it works and that I will be back in remission by January.

Don't get me wrong, I know all our cancers and treatments are different and I pray that you stay in remission forever. I just wanted to share my story to give another guy's battle. Every day I try to get up fighting and with a positive attitude to beat this. Having a strong mind, body and spirit connection has helped me make it so far. I have ten rounds of chemo pumped into me to date and I just have to keep slugging it out with this beast.

Take care of yourself, eat extremely healthy and beat this. For all of us suffering through this disease we need to hear your inspiring story.

Adi-Dad
Posts: 3
Joined: Nov 2010

Mr.Frank66

My father is going have his first Chemo in few days. He is 54yrs old and scared about Cancer.
Wondering whether are there any pre-cautions/sugesstions to prepare him for the treatment.

He lost almost 20-25Lbs as he has trouble eating solids. He is on liquids. We recently come to know about his cancer (two days back).

Please advice.

dustmagnet7
Posts: 27
Joined: Oct 2010

I'm very sorry to hear about your dad. I've said it before and I'll say it again...nobody deserves this. Anyhow, as far as diet goes, even though I no longer have a stomach, I can eat the same as before my diagnosis (just less and more often). However, when I was going through chemo I had crippling nausea and would loose the lining of my digestive track. I also got the occasional mouth sore. All of this made eating VERY difficult, if not down right painful. One thing that helped me was that durring surgery, my surgeon installed what is called a J-tube. Its a direct liquid food line to your intestines. When I was really sick I had an infusion pump at home that I would use to pump liquid nutrition. They are horribly annoying to live with, but it definitely saved my life. If eating becomes a big problem, you may want to talk to your dad's doc about getting one installed. My wife also would make a very nourishing soup at home by steaming vegetables and blending them in a food processor with good quality chicken broth (we are long time foodies, so we make our own). It would get blended smooth and she would keep it bland because the chemo affected my taste. Then she would add a little fish oil (aids in weight gain and keeping it on) and whey protein (which has its own unique anti-cancer properties). Both of these can be found at health food and natural food stores. This soup freezes very well. Make sure your dad gets plenty of vegies and protein (fish is the best). As far as sleeping goes, after surgery and all through chemo I had to train myself to sleep sitting up because of the J-tube. I would get as comfortable as possible, turn on my ipod and then basically drug myself to sleep. Managing pain and nausea is very important. If you are in pain or sick, you can't rest. If you can't rest, you won't heal proper. Make sure you dad's doctors are doing what they can to manage this. I also can't stress enough the benefits of medical marijuana if that is an option where you live. Now, on to the subject of chemo. It really depends upon what type of drugs your dad gets and that everyones chemistry is different, so people react different. The side effects I had were numerous and severe...still dealing with several. The best thing I can recomend is to make sure your dad gets plenty of water, lots of rest and just deal with treatment day by day.
I hope this helps and I hope the best for your father (and you). Stay strong and make sure your father knows he has something to fight for. Best wishes!

frank66
Posts: 5
Joined: Mar 2010

Hi Adi-Dad,
Thanks for reaching out for advice. The more I experience cancer the more I realize how important it is to talk to others, especially the community of us that is touched by this disease. I hope what I am sharing helps.

I had six rounds of EOX. I’m not sure what chemo he is on, and we all react differently, so I pray his body tolerates the treatment. For me, it was very important to keep a positive attitude through it. So if your Dad is battling with fear and negative thoughts, I don't think that helps. There are some inspirational books that help, the one I like the most is from Lance Armstrong. This is the mental part of surviving cancer. Give him all the love and support he needs, it's amazing how the support of others during this ordeal has helped me.

One good thing about chemo in 2010 is that there are so many drugs out there that can control side effects. It's quite amazing. As a good friend once told me, cancer in 2010 is not like cancer 10, 20 or 30 years ago, a lot of progress has been made. Going into the chemo, make sure the doctors and nurses give him enough anti-nausea meds. One drug, Aloxi, is administered intravenously during the therapy. It lasts four days and works well for me. Zofran also is a good one. Decadron is another one for strong nausea. Ativan and Compazine gave me some tough side effects so I try to stay away from those ones. He will also need to balance the anti nausea meds with the digestive effects. Lots of bloating, gas, diarrhea. On the EOX therapy, I actually would take a lot of gas-x to relieve symptoms. It's not pretty! The more he can learn about the meds to control side effects, the quicker he can get back on his feet. It usually took me about three days after an infusion to return to work. Tell him not to worry about the chemo fog, it's bad especially on day 2 after infusion, but it clears. The more he and his support network can learn about all the meds, the better he will be able to take the right meds to control each side effect. They even had a pill for me to control hiccups!

If he is on any of the platinum based drugs, he is going to have cold sensitivity. Touching anything cold will be painful, like sticking your hand in ice water. He has to be careful about this and it leads to numbness in your fingers and toes.
Chemo will also play havoc with his taste buds, and he may get quite cranky, as I did, as food no longer tastes normal. The docs told me that fighting with your loved ones over food is very common. I'm sure your docs have advised to keep getting calories in him to prevent weight loss, regardless if it is healthy food or not. I tend to disagree with that, I tried to eat as healthy as possible. Lots of blended fruit and vegetable juices, we even bought a masticating blender to get heavily into juicing - very healthy but certainly not comfort food.

I’m now on a stronger chemo, 5FU, oxaliplatin and irinotecan. More anti nausea and diarrhea/constipation drugs. I’ve dreaded these infusions as the side effects are stronger. I’m trying to stay positive but it can be tough. The support of my wife through all this has been the only way I can get through it with some measure of grace. I hope he has a good support network that helps him, I can’t understate how important this is.

I hope some of this has helped. Good luck and God Bless.

dustmagnet7
Posts: 27
Joined: Oct 2010

First off, I'm sorry to hear that your cancer came back, but I'm very glad to hear that you are staying positive and as healthy as possible. Thats the only way to survive. My oncologist told me something back when I first met him and got my diagnosis. He told me to prepare for the worst, but hope for the best. It sounded so horribly self help book, but it stuck with me. It helped me stay realistic about my situation. I'm currently living without a good portion of my digestive track, have only been declared clear for a few months and things have the potential to go realy bad at any point. However, I refuse to let all of that keep me down and just try and do what it takes to live my life to its fullest and stay cancer free. I have a wonderful wife I need to grow old with and a 5 year old daughter that I want to see grow up. Whatever may happen, I guess will, but in the meantime I plan on enjoying myself! Have to stay positive, but still remain realistic.
I hope the new treatment works well for you. Sounds like it may be similar to my program...brutal. Not to scare you, but I am still dealing daily with the side effects. Thanks for the post. Its always good to hear someone else's perspective. Keep fighting and best wishes!

jenene
Posts: 40
Joined: Oct 2010

We have gone through 3 rounds with my husband. He is also on the EOX plan. This third round has been brutal. Lots of nausea/vomiting. He is also VERY tired. They say the 3rd round is the worse. I hope they are right. He is also having ascites build up in his abdomen that is making it uncomfortable for him to do much of anything. We have our cat scan on Friday. Hopefully good news will come from it, because we have had nothing but bad luck so far. I keep hearing people's stories of survival, whihc frankly is whta is making life liveable right now. I hope we get through this and wish everyone the best on this horrible journey with the beast,

dustmagnet7
Posts: 27
Joined: Oct 2010

Best wishes on the next scan. I don't think chemo ever really got easier until I was off the platinum drugs, however, if your husband is like me, he'll get used to the treatments and they won't seem as bad. Once you know what to expect, it gets easier because you can prepare yourself for it. Stay positive, keep fighting and treat each day alive as a victory!

megannbob01
Posts: 1
Joined: Dec 2010

Your story sounds very similar to my dad. He is 57 and has stage 4 stomach cancer that was diagnosed in May 2010. He just got a really good pet scan and he is trying to decide on surgery. Has that been an option for you?

knewbetter
Posts: 11
Joined: Dec 2010

Dear Dustmagnet,
it is so good to hear your story. I tend to get bogged down reading medical texts and journals, the Numbers Game is always very depressing. and then I need to remember-- there are no percentages when it comes to whole people.
My 43 year old husband was diagnosed on jan 21 2010, after I had been telling him to take pepcid for a year... his PMD had told him it was Giardia, and he had completely ignored his mother telling him there was bum gene in his family that he needed to get tested. So when the initial diagnosis hit the fan, we went to MD Anderson, and had the full battery of tests-- only to sadly learn that he had 3 positive nodes, small smudges of cancer in the peritoneum, and the peritoneal fluid was also positive for cells. Stage IV. Not eligible for the possibly curative gastrectomy. I can still remember the unlimited pessimism that came our way, it poured out of the Drs, who essentially told us to get our stuff in order. I remember trying to engage the medical oncologist regarding adjunctive therapies, or aggressive intraperitoneal chemo.. but it was sort of "case closed". And thus we were sent home for chemo.
Still. We are lucky for all the highly toxic chemo..there are a lot more people hanging on.. I really think there should be new numbers now... we decided also to use an immunomodulator medicine that they use in Japan and china. It was really hard to get b/c we had to have someone hand carry it from Japan, and we needed my medical connections (nurse friends) in order to give him home infusions. But I think that it was part of the tipping point. (it is called Lentinan, or Tiandixin made by luye. http://www.luye.cn/product.php?id=29). He did that plus, the regular Oxalaplatin, 5-FU, and docetaxol. every 2 weeks from March til mid July.
Last Aug we went to NIH. There is an ongoing study there to evaluate radical aggressive surgery with hot chemo in the abdominal cavity. They have been doing this procedure in Korea, Japan, Germany and France.. and the numbers are encouraging. So we really wanted to be on the surgical arm. obviously. this is the only possible means of a cure. So my husband had another exploratory/staging lap which showed that his peritoneal fluid was clear!! no more signs of the metastatic disease. Unfortunately he was randomized to the chemo only arm so he still needed surgery. He spent Sept- Nov on Oxali, 5-FU & irectotecan, and we kept up with the Lentinan. Now we are back at MD Anderson, b/c MAYBE.. (if he is still clear) they will perform a gastrectomy. Yesterday he had the U/S EGD and it showe NO MORE Nodes! Later today we meet with the surgeon. On the 10th he is scheduled for a diagnostic lap with possible gastrectomy if the washings are clear This is all very exciting for us... and yet... still tempered... by the fear. so that is our story. kind of along the same timeline as you. I wish you the best of luck.
karen

dustmagnet7
Posts: 27
Joined: Oct 2010

Your story sounds all too familiar. My pcp put me on prilosec and that masked my symptoms for about a year...always wonder how much better off I'd be if I would have seen a specialist earlier. Oh well, woulda-coulda-shoulda. Sounds like you guys have done your reasearch well. My wife & I did the same. We checked into so many different treatment options...conventional and non-conventional. Its easy to get myred up in all of it. The immunomodulator is an interesting drug. We had done a little checking into similar meds, but they were unavailable to us. Thats great you were able to get some. I have heard very good results from the hot chemo treatments as well. The doctor who did my gastrecomy is a surgical oncologist and has done those procedures before (he is currently doing them on a very limited basis here in the states). That was actually the next treatment on my list if my cancer would have been unresponsive to standard chemo. However, as of now, the chemo and gastrectomy seemed to have worked. Thats great, not sure I want to be a human punch bowl for hot toxins, but I'll do whatever it takes. Good to hear that they are planing just a partial gastrecomy for your husband...life after a complete gastrectomy is challenging at best. Sounds like things are going well with your husbands treatments and he is responsive. I truely hope that is a continuing trend. Keep fighting and best wishes!

frank66
Posts: 5
Joined: Mar 2010

Dear Karen and Dustmagnet,
I'm impressed with the detail and options you have researched to battle your and your loved one's cancer. I'm looking for some advice and education. I too scour the internet pages and have docs in Iowa (my primary care is there), California and Houston that I work with, but it's amazing how they like to stick to protocol, sometimes I feel they are too hesitant to go more aggressive. I just don't want to leave anything on the table!

The info on the Lentinan was very interesting to me, if there is anything else you can share I would be appreciative. Also, what is "hot chemo"? My cancer started with about a 6cm adenocarcinoma tumor in the gastric chamber of the stomach that grew into the GE junction. Then mets to lymph nodes all over. But ever since my first round of EOX, the GE area has not given me any problems. The problems, and relapse I had in October was due to lymph nodes around the pancreas. It seems like this is where the problems are for me. My docs say surgery to go after the abdodminal lymph nodes is not an option. Radiation is a possibility. So when you mentioned the hot chemo I thought, perhaps this is an option for the docs to consider.

Thanks for the help and you both are inspirational!

dustmagnet7
Posts: 27
Joined: Oct 2010

After my diagnosis and initial surgery I also spent a lot of time researching on line. Didn't have much else to do except heal. The sheer amount of information out there is overwhelming. At one point I thought about making a dart board of treatment options and letting fate, luck and physics decide my course of treatment (I didn't though). In the end, I decided to trust my medical team and also suppliment with some not at all conventional treatments. I live near Grand Rapids, Michigan. A brand new cancer treatment and research facility, Lemmen-Holton, recently opened down town. They recruted some of the best oncologists and surgical oncologists from around the world to set up practice. My initial medical team was young and very versed in lots of the latest new treatments. They were also very aggressive. You really have to make sure that you FEEL like you are doing the most to beat this. If your doctors are telling you there is nothing else they can do, they must not be the best doctors for you. I like to think of my doctor like I think of my mechanic...if he's not doing the best work he can, I'll find another one. As far as the hot chemo goes, like Karen had said, its mostly being done overseas with very encouraging results. Basically, as I understand, your entire abdominal cavity is opened up and physically flooded with a heated chemo solution (not sure the specific drugs used or temp. its heated to). This puts the drugs in direct contact with the cancer and I believe the temperature helps it get into the cells. They let this slosh around in you for a bit (human punchbowl of toxins) then you are drained and put back together. Like I had said earlier, my surgical oncologist has direct experience with the procedure and this will probably be my next course of treatment if it ever becomes necessary. Keep up the good fight!

knewbetter
Posts: 11
Joined: Dec 2010

dear frank and dustmagnet,
It is so good to hear that both of you are keeping up the fight, and acting as your own advocate. It is the most important thing I think.

As for us, well we had the unbelievable news that the biopies of his tumor did not show any cancer cells anymore!! so. at this time he has no detectable disease. We had a long conversation with the surgeon (who is very adamantly against HIPEC-- hyperthermic intraperitoneal chemo) about all of our options. and really there isn't any data that favors any of them, mainly because complete responses are so rare.

so it looks like he will get a total gastrectomy on Fri. and then, we will watch and worry.
and you know, if it recurs, I think we will go to Singapore and get some of the new drugs.. like TS-1. not yet available in the US. but then again if it takes a few years for it to come back, hey maybe there will be other treatment options. And of course there is always the possibility that it just won't come back.

Meanwhile Frank, if you want Lentinan, you have to go to China to get it. I mis-typed last time. You can get it over the counter in china, but it has to be hand carried not shipped, b/c it is not FDA approved. And then you have to have saline bags and iv suppies at home and someone to start your iv, etc.. the drug company website has the info about how it is given. the dose I read about working the best was 2mg twice a week. and that is what we used.
good luck
k

frank66
Posts: 5
Joined: Mar 2010

Thank-you Karen and Dustmagnet for your advice.

Karen, good luck with your husband's surgery on Friday. My docs have told me resection is the only way to completely recover. That is such exciting news that your husband has reached that stage!

God Bless
Frank.

Tonio
Posts: 5
Joined: Apr 2011

Hi Frank,

How are you doing with your latest treatments?

My brother, James who is two years older at 63, was diagnosed with cancer of the esophagus/stomach at the sphincter junction which created swallowing difficulty. This was around Sept/Oct 2010. He had chemo and radiation shortly thereafter. He was soon found to be cancer free with a Pet scan early February 2011. They were prepared to do surgery and remove a portion of the esophagus and half the stomach but he started having bleeding at the juncture site. This was apparently due to irritation from food passing the damaged junction. He started being fed through a tube in his nose but his albumin level was low and he was never able to get the albumin level high enough to qualify him for the needed surgery. On March 25th he had an examination due to abdominal bloating and they found him to have ascites. A CT scan at that time indicated spots in the abdominal area and a small spot in the liver and his "stage" was moved to stage IV.

We just took him off the intestinal feeding tube (from the nose) and have inserted a "PEG" tube for direct stomach feeding and improved nutrition.

The doctor is no longer even discussing surgery due to the apparent matastases. I feel that the doctors have given up on him and are only trying to make him comfortable. I want to know what others think we should be expecting from the doctors as to more chemo and what Meds they have used to reduce the ascites fluid buildup.

Also did you have ascites fluid accumlulation in the abdomen and and how did your treatment deal with it?

Thanks, Tony

neverquit
Posts: 221
Joined: Oct 2010

dustmagnet7 and other survivors who have been posting your experiences, your openness and willingness to discuss what you have been through/are going through is very helpful.
My husband was diagnosed with stage IV with mets to the bones on 6/21/10. He is only 54, was in great shape and had no symptoms until it was too late (about 4 weeks before he was finally diagnosed). It is really good to know that there are people who are making progress with their fight.
My husband could barely eat anything and went from 185 to 123 lbs. with little hope. His Oncologist is a fighter who does not believe in the odds (unlike the first Oncologist he saw who said my husband had no hope had only 2 to 4 months without chemo and 6 months with chemo). His new Oncologist did the targeted molecular therapy and thus did 6 rounds of Cisplatin/Taxotere and 5-FU. He was able to start to eat better again (about 1/3 to 1/2 of what he used to be able to eat) and got his weight back up to 140 lbs. His PET Scan and CAT scan improved along with the Endoscopy results and the blood marker levels. He actually started to fell like maybe he was going to beat the odds.
He got an extra two weeks off from chemo so the Oncologist could see what the latest molecular targeted therapy results were and to allow my husband to gain more weight before his next round of chemo (she was changing the chemo because although one marker dropped, the other two were not dropping). In just those two extra weeks off, my husband started not to feel very well and his nausea is back (Zofran not working as well). The Oncologist started his new chemo last Tuesday (I/L/5-FU) and it made him sick as a dog (nausea/diarrhea) and left him no appetite. He is still eating though (because I am such a pain in the neck) and is being able to keep his weight fairly stable, but this change in how he feels has been a blow to his spirits. We are praying that the new chemo gets him feeling better with improved results on the blood markers. It is unbelievable how quickly this cancer acts. I agree, no one should have to go through this.
Again, I just wanted to thank you all as now I can show my husband that there are survivors that are making progress. Also, I have contacts in China and could probably get some of the chemo/drug you mentioned (and I will ask the Oncologist what she knows about it) - good information.
One question I have is how many of you are doing juicing or any other diet change that you feel is being helpful? Thanks.
Best wishes to all of you.

Tannie
Posts: 2
Joined: Dec 2010

How wonderful that the cancer has cleared so much.

Can you tell me some more about MD Anderson. I am from Australia & have read good reports about them on the net. I just contacted them regarding my dad who has stage 4 stomach cancer, in the peritoneal lymph nodes & specks have just appeared on the liver. Due to the liver specks, he was deemed inoperable last thursday when he was taking in for keyhole surgery & gastrectomy (they stopped after the keyhole).

From your comments, it sounds like my dad would be told to get his stuff in order by MD anderson. He's been subject to a whole battery of tests here in Australia. I don't want him going through the same tests for the same result. What was your experience like with MD Anderson?

Also, what is the NIH you refer to?

I am very interested in the Lentinan. Can you tell me more about it.

Tanya

knewbetter
Posts: 11
Joined: Dec 2010

so as a follow up to what happened, my husband was on the operating table, we were hoping for the gastrectomy... but they found 2mm spot of malignant cells and there were some cells in the peritoneal fluid, so the surgery was cancelled.
this obviously was very disapointing.
We have now found a doc who is willing to do Cytoreductive surgery (cut out all the spots visible) and the Hyperthermic Intraperitoneal Chemo as well as a gastrectomy. Since my husband doesn't have much in the way of a tumor burden-- mainly the few cells floating around in the fluid-- (Before chemo he had a big tumor in his stomach, 3 lymphnodes, a spot on his diaphragm, and cells in the fluid) he is decent candidate for this surgery. we think it is his best chance for a long survival.
For your dad Tannie, he will need to be on Chemo for a while before he can be re-evaluated for possible surgery. If he responds then maybe surgery could help. It is a big nasty surgery that changes your life, and one is only done if it looks like it could really prolong life. It there are a lot of mets, then simple gastrectomy is not the answer.

NIH is the National Institute of Health, in Bethesda Maryland. There is now a clinical trial going on that compares chemo only to radical surgery that attempts to cut out any signs of tumor/mets in people with stage 4 gastric cancer. So all the treatment is Free.

Lentinan is peptide derived from the shitake mushroom. It is given intravenouslly. It has been shown to activate Natural Killer Cells which are part of the immune system that take out cancer cells. It is used in Japan as a chemo agent. It is not approved for use here in the US by the FDA.
Good Luck!

neverquit
Posts: 221
Joined: Oct 2010

knewbetter, thanks for the info. on the Lentinan. I am going to see its availability in China as I have contacts there. We need a miracle and I am keeping all options open for my husband. Thanks again.

bessie_leftwich2009
Posts: 1
Joined: Jan 2011

Hi, I am looking for survivors also. I am 32 years old and was diagnosed with stage IV stomach cancer in Oct. 2010 and not undergoing chemo treatments. They told me I have 6 months without chemo and 2 years with chemo. I am desperately trying to find someone who has had good results. Everything you read is so depressing....I am not a candidate for surgery to remove the tumors. They tried but they were too large to remove. I would appreciate your thoughts.

have2believe
Posts: 135
Joined: Dec 2010

I know people where it's hit the liver and one then got surgery, another opted not to do surgery. I know someone that spread to a distant lymph node and is cancer free about 2 years now. I'm not sure what your situation is, but please make sure you seek other opinions. I've brought my mom to see at least 5 since diagnosis. Are you in pain and just decided to go w/ palliative therapy? Are you choosing not to do chemo? My mom was really scared of the side effects but she handled it like a trooper and it wasn't as bad as she imagined. Please let us know some more info so that I can provide some insight. Also, look at cancercompass.com in the stomach cancer section. It's a helpful board.

lukeanand
Posts: 4
Joined: Feb 2011

HI All,
My dad is of 65 years old, he got diagnosed with stomach cancer 3 weeks before and we took him to the best cancer hospital in Chennai, India got him operated. He is feeling better, but please let me know, what are the precautions we should take. What can he eat and how can he live a longer life. Doctor said that he does not need to undergo chemotherapy. What are the steps we need to take to give him more life? Please help us....
Luke

lukeanand
Posts: 4
Joined: Feb 2011

dustmagnet7,
Nice to see that you got completed cured, please tell us all that what are the steps you have taken for the cure....it will help millions of people to get cure...Luke

lukeanand
Posts: 4
Joined: Feb 2011

My dad is complaining about sever pain in his left hand, is this a effect of cancer. Yestrday his dr. had prescribed him to take tarmadol 37.5 mg one tablet a day, can we take this tablet for long, or we need to do some alternate steps to get relif from the hand pain. We are not able to see his criying on is pain.
Luke

maltese77
Posts: 1
Joined: Feb 2011

Hi,
I read your info and I am so glad you are a survivor.
My husband was diagnosed with stomach cancer in December 2010 which has spread to his
liver.
He has been undergoing chemo treatments (he is on his fourth)since it is too large to
operate.
His oncologist told us that he does not recommend radiation.

What type of treatment did you have?
Did you go to M.D. Anderson in Houston?

Please share all your info.

Mary

RandyHillard
Posts: 2
Joined: Mar 2011

I just joined CSN today and posted on the "Does anyone survive stage 4 thread?". This forum really makes me feel a lot less alone.

Since it seems difficult to get Lentinan IV, has anyone been able to get "superfine dispersed lentinan"for oral therapy? There have been a couple promising articles about it from Japan. If that is not possible, any thoughts about or experience with shitake powder or extracts?

Thanks!

we_shall_overcome
Posts: 1
Joined: May 2011

Dear dustmagnet7,
Your overcoming of this dreaded disease has provided a sliver of hope to me and family.

I request you to kindly share the name of the institute and possibly of the doctor(s) who treated you so that we can also seek help from them.

Looking forward to your reply with bated breath.

Regards.

agzii
Posts: 1
Joined: May 2013

Hi dUSTMAGNET,

 

I read about your story and wonder if you can share your story with me on how you beat this stage four cancer. My mom has been diagnosed with stage 4 cancer in the stomach and is now in the hospital. Pls if you can tell me what you did and which doctors or specilaists treated you.

Agzii

Mohamed13
Posts: 1
Joined: May 2013

My cousin in Egypt had stomach and bowl cancer a year ago. He went  through surgery and removed most of his stomach and a small part of his small intestine then chemo then he began regaining his health for a month. Then all of a sudden he started getting horrible cramps 24 hours a day. It has been 2 months since he had eaten and his tummy started getting as rough as cement. He went to doctors and they don't know what is wrong. He is constantly on Morfen to cope with the pain. He did not sleep for two months.

Any one out there know of someone experienced similar symptoms?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network