Looking for survivors of stomach cancer

Keep Fighting!
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.

frank66 said:

Keep Fighting!
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.

Please advice on Chemotherapy side-effects
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.

Adi-Dad said:

Please advice on Chemotherapy side-effects
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.

I hope some of this helps!
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.

knewbetter 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

New options
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 said:

After my diagnosis and
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!

keep on going
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

dustmagnet7 said:

After my diagnosis and
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!

My husband was diagnosed 6/21/10
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.

frank66 said:

Keep Fighting!
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.

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?