Looking for survivors of stomach cancer
Comments
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Great to hear knewbetterknewbetter said:feeling hopeful
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
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.
Tanya0 -
operable or notTannie said:Great to hear knewbetter
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
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!0 -
Helped me eat betterAdi-Dad said:Please advice on Diet
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.
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 Bless0 -
Thanks for the info.knewbetter said:operable or not
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!
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.0 -
Total GASTERECTOMYMrBBarc said:The fun I had with cancer
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!
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! amyinsc0 -
Gastrectomyamyinsc said:Total GASTERECTOMY
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
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!
JuneA0 -
hi I have stage IV stomach cancer
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.0 -
can u provide more info?bessie_leftwich2009 said:hi I have stage IV stomach cancer
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.
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.0 -
Hello amyinsc,keep coming onamyinsc said:Total GASTERECTOMY
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
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 wishes0 -
Trying to navigate thisliveinhope said:Hello amyinsc,keep coming on
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
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!0 -
Very similar storylibragirl said:Trying to navigate this
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!
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.0 -
Hi Jenene, sorry to hearjenene said:Very similar story
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.
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.0 -
Hello,my son had alibragirl said:Trying to navigate this
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!
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 brother0 -
Jenene,I just re-read yourjenene said:Very similar story
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.
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?0 -
My Dad is just home from his Stomach Cancer Operation
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....
Luke0 -
Dear DustMagnet7
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.
Luke0 -
stomach cancer
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.
Mary0 -
Stage 4maltese77 said:stomach cancer
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
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!0 -
Esophageal Cancer and Ascitesfrank66 said:Thank-you
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.
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, Tony0
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