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Help newbie- stage IV

jenene
Posts: 40
Joined: Oct 2010

My husband is 38 and just diagnosed with stomach cancer. It s stage IV and has gone to his liver. They say the cancer is about 1/3 of his stomach, where it meets the esophagus. All of the doctors are doom and gloom telling him he will not survive. Because of this he feels very depressed and seems done with life. I still feel there must be hope out there. They say they cannot operate. He is going to start his first round of chemo tomorrow. I feel like someone has to be able to do something. Will anyone do surgery? Is it really not possible? Is the outcome really unbeatable like they all say? We have a 3 and 1/2 year old daughter and I just can't bear to see her without a father.

He still is able to eat some foods. At this point anything I tell him to try he really doesn't want to hear. Any advice on nutrition?

tuffoldbird
Posts: 7
Joined: Sep 2010

Dear Jenene,

I am so sorry to hear of your husband's diagnosis, and would like to offer you both some answers and some hope.

I was diagnosed with Stage IV stomach cancer in early November, 2009, and also had spread to my liver, some lymph nodes, and encroachment into my esophagus, so his condition at the outset is very similar to mine, except that my stomach was almost completely full of tumor, and the encroachment into my esophagus had made it impossible for me to swallow solid food for a couple of months before I finally saw a doctor. The surgeon who did the endoscopy sent my CT scan to Oregon Health Sciences University, and they declined to do any surgery on me. The surgeon told me there was "zero percent chance of a cure," and pretty much sent me home to die. After a week-long "pity party," I went back to his office and pretty much demanded to be referred to an oncologist. Like you, I felt there HAD to be something that could be done. As luck would have it, I was able to meet with the oncologist that very day, which was a Friday afternoon, and I left his office scheduled for a port placement on Monday morning, and my first round of chemo on Wednesday morning!

The oncologist advised me that the chemo had a one-third chance of working well and taking care of most of the tumor, a one-third chance of stopping its growth but not getting rid of it, and a one-third chance of doing nothing at all for me. I felt that I had at least a two out of three chance of being better than I was, and a "zero percent chance" of being worse, so opted for the six rounds of chemo, three weeks apart. The first round was on December 9, the second on December 30, and by the end of the second round, the tumor in my esophagus had shrunk enough that I could begin to eat soft solid foods again, so I knew early on that I had made the right choice, and also that I was one of the lucky one-third!

Chemo was no bed of roses, far from it, but really not nearly as bad as I expected it to be. I had another CT scan after the sixth round, and the spot in my liver, the enlarged lymph nodes, and the tumor in my stomach were gone, and my esophagus was clear. The oncologist and I decided on two "insurance rounds" of chemo in April and May, since I had done so well with it. We had added oral Xeloda once I was able to swallow tablets again, and since the two extra chemo's, that is the only medicine I am taking.

In answer to your question, YES, there are surgeons who are doing surgery on patients who have had a good response to chemo! My oncologist sent my new CT and records back to OHSU, and they again declined to recommend surgery. This puzzled me, but I feel that probably my age (71) has something to do with it. I know that most, if not all, of these surgeons are in large teaching hospitals or cancer centers, but if your husband has a good response to chemo, his oncologist can help you in finding a facility and surgeon. I could have been more aggressive and tried harder to find someone who would operate on me, but I am not 100% sure that at this stage of my life I would actually choose to put myself through such major surgery. Your husband's age and the fact that he can still eat would definitely weigh in his favor for successful surgery, in my opinion.

I pray that he has a good response to the chemo, and that he is able to have surgery. I would have certainly moved mountains if I were as young as he is and had children at home. Right now I am feeling wonderful, have a great quality of life, and hope that no matter what, he can say the same when he is a year out from this very grim diagnosis. Please do not hesitate to post any questions you have as far as what drugs were used, etc. and I will be happy to answer. He is lucky to have you!

Sandy

jenene
Posts: 40
Joined: Oct 2010

You give me hope. He will be starting chemo in a week or two. He is getting the cocktail of 3 drugs. Not sure of the names right now. I have hope now though. He will fight this and win. When he responds to chemo I will find somewhere where sugery will be an option. Thank you for giving me hope.

dustmagnet7
Posts: 27
Joined: Oct 2010

I'm 36, have a wonderful wife and 5 year old daughter and was diagnosed in febuary this year with stage 4 metastesized stomach cancer. The tomor in my stomach was large to the point of causing internal bleeding due to fissures the outer wall. I had my entire stomach, 2/3 of my small intestines, part of my large intestine and most of the surrounding omentum (fatty stuff) removed. This took care of most of the cancer. Four weeks after surgery I started chemo. I went through 7 rounds (3 week cycles) with a three drug plan...cisplatin, taxotere and 5-FU. The dosages of the first 2 drugs were very high, but due to my age, my oncologist decided to be as agressive as my body could handle. I ended up having two EXTREMELY scary allergic reactions and lost almost 70 pounds over the course of treatment. However...I just had my second clear scan and am currently done with treatments. Cancer free (and hoping it will stay that way). The origional diagnosis gave me 12 to 16 months to live...I say sucks to that. I've learned a lot of good survival tricks over the last 8 months that I will be glad to share. Never give up and when you think you've gone as far as you can, go a little farther. I wish the best for all of you.

mother23
Posts: 5
Joined: Sep 2010

Congratulations dustmagnet7 on your awesome recovery!!! How do you feel now? My family member is just starting chemo after having half of his stomach removed. How did you know you were having an allergic reaction? How long did it take you (after chemo) to start feeling better? Thanks for sharing your story. You must be quite a fighter!

dustmagnet7
Posts: 27
Joined: Oct 2010

I've been out of chemo now for about 5 weeks and I must say I have my good days and I have bad ones. The chemo course they gave me was VERY agressive. My oncologist said that the dosages they were giving me would probably kill people in their 60's...mot always what you want to hear. Anyhow, the first time I got the taxotere my heart went THUMP.........THUMP then felt like it stoped, my throat swelled shut and I turned bright red in the coarse of about 45 seconds. They shot me full of steroids and was instantly better. From then on, they had to cut the taxotere with steroids and things went fine. The cisplatin (worst of the drugs I had) didn't give me an allergic reaction until my 5th round of treatment. That one felt like I had a car sitting on my chest and I had a very difficult time breathing. That drug, once you develope an allergy, can no longer be given. That was a good thing, because it was the hardest on my body. It caused SEVERE nausea and over long use I ended up with neuropathy in my hands and feet (haven't felt them in over a month). Keep fighting!

5252
Posts: 4
Joined: Jan 2009

hi dustmagnet,

could you pls share how eat your food. my brother now on chemo again for 3rd cycle and he can't swallow anything, just keep throw up..
thanks...

dustmagnet7
Posts: 27
Joined: Oct 2010

5252...

I only really experienced difficulty eating when I was on chemo. The regiment of drugs they were giving me made me horribly nauceaus and I also had issues with mouth sores and I would loose some of the lining of my digestive tract each round of chemo. During surgery, my surgeon installed a J-tube in my intestines which helped me get nutrition durring the worst of chemo, but that just isn't quite the same as eating. The biggest help to me was figuring out how to fight the nausea. Once I got the nausea udner control, eating wasn't as much of a problem. For some reason, most of the anti-nausea meds that my oncologist gave me had little or no effect. The only one I had good sucess with was called Sancuso, its a patch you wear on your skin, but it is VERY expensive. Other than that, marijuana helped tremendously fighting the nausea and also helps with appetite. Once the nausea got under control, I would start out eating broths (always made our own with organic vegies and chicken) and also smoothies (fresh fruit, yogurt, fish oil, whey protein). Once I started feeling better I would slowly switch to more solid food. Try starting with your brothers favorite foods first, its more likely he will want to eat them and at this point eating anything has got to be better than nothing. Eating small amounts as often as possible is important as well as getting a good mix of protein, vegies and grains throughout the day. Best wishes to you and your brother.

5252
Posts: 4
Joined: Jan 2009

dustmagnet7,

thank you very much for your reply, i really appreciate i will try it with my brother.

best wishes for you too

brenda1956
Posts: 4
Joined: Feb 2011

Could youplease let me know where you had your surgery? My husband has stomach cancer and it also involves his omentum and the outside of his intestines. Mayo refuses to do surgery as well as UCLA.

mother23
Posts: 5
Joined: Sep 2010

How is your husband? Has he started chemo yet? I would try to get him to stay away from any refined sugars for starters. No white bread, white rice or anything sugary. If he is able to eat normally, try to get him to eat as much fresh green veggies as possible. All those cancer fighting veggies that we always hear about: spinach, cabbage, broccoli, kale... Salmon, legumes and fruits and veggies make perfect meals. Good luck! Keep positive.

tuffoldbird
Posts: 7
Joined: Sep 2010

Hi, Jenene! I'm thinking your husband has probably had his first round of chemo by now, and hope it went all right for him, and that the side effects are not too bad. What drug regimen did they put him on?

I am thinking of all of you, and hope that this goes as smoothly as possible for all of you. I send you best wishes every day! If you have any questions, please don't hesitate to post - I'll be happy to help if I can.

My best wishes to you and your family.
Sandy

jenene
Posts: 40
Joined: Oct 2010

Yes we started chemo last week. It was really rough for a while but things seem to be better now. He was really tired and slept for 2 days straight. Right now we are trying to get back to some normalcy. Trying to figure out foods to eat and so on. I need to cook some more fresh veggies, but being a first year teacher makes that kind of hard. I thought for a while I was going to lose my mind with everything, but I seem to be doing okay right now. Just wondering what the future will hold for us. Hopefully the next round of chemo won't be so bad. Thanks for asking how things were.

livestrong_fighter's picture
livestrong_fighter
Posts: 39
Joined: Dec 2009

Jenene,

I just want to say, stay strong, fight like hell,
both you and your husband, life is good, worth
fighting, stay positive.

Believe is the beginning of everything!

He will certainly be in my prayer!

Good luck!

jenene
Posts: 40
Joined: Oct 2010

First round of chemo went fairly well. He hasn't been too nauseous. We are about to start round 2 on Friday. I keep hearing all of these stories about people having surgery even if their cancer has spread. My husband was told surgery wasn't an option? We are looking at getting a second opinion. Hopefully we will have a good Christmas we find out the results of the CT scan right before then. Thanks everyone for your support.

dustmagnet7
Posts: 27
Joined: Oct 2010

I'm so glad your husband is doing o.k. with the chemo. The nausea I experienced was crippling. Anyhow, as far as surgery before chemo goes, it was necessary for me due to the fact that the tumor in my stomach had caused fissures in the stomach wall and I was bleeding internally. However, interesting side note, my first consult in the hospital was a surgical oncologist who recomended against first having an oncology consult. His experience was that standard procedure in these situations was to first shrink the tumor with chemo then possibly opperate later. Which-ever plan is better, who can say, but as far as I was concerned, cut as much of the cancer out as they can...then nuke the rest. Check out a surgical oncologist...second opinion can't hurt. Best wishes to you and your husband...keep fighting.

babsgs
Posts: 3
Joined: Nov 2010

I am 42 yo female diagnosed with stage 4 stomach cancer in January 2010. Because of metz to the stomach wall surgery not recommended. I was given a year prognosis at the local cancer center. However I went to Boston to Mass General and have been participating in a clinical trial. Each CT scan shows some shrinking of the tumor. The attitude at MGH is postitive and aggressive. Definately get 2nd and 3rd opinions. My biggest problem has been eating (only small amount or softer foods) and I had a Picc line placed for IV nutrition at home due to extreme weight loss early on. Now my weight is back to normal and much more energy.

livestrong_fighter's picture
livestrong_fighter
Posts: 39
Joined: Dec 2009

great to hear you are doing well! Mind sharing your case (esp about clinical trial) with us?

God bless!

babsgs
Posts: 3
Joined: Nov 2010

the trial is through MGH. It is cisplatin, irinotecan and bevacizumab vs the same 3 drugs + decetaxel (avastin). It is a randomized trial. I was in the avastin group but due to a lengthy (2 months off and on) hospitalization for infection I am off the protocol but still receiving the 3 base drugs. My CT scans have shown reduction of the tumor and metz. Even the CT after being off chemo for 2 months showed minimal changes and the MD was very pleased. I started in late February/early March with 1 day a week for 2 weeks and then a week off. No break until I was in the hospital and now back on for as long as I can handle it.

Edward W
Posts: 30
Joined: Oct 2010

Dear Jenene. I don't want to give you false hope. But If I were you I would contact a Cancer Center. Here's my story in brief, Esophageal cancer, Stage IV. Chemo and Radiation together, (same time) for aggressive reduction of tumor. During surgery found the whole Esophagus invloved. Conference with wife,take it all ? yes. make new "esophagus" using 80% of stomach....That was ten years ago.. How good is quality of life ? (I've been flying around to vacation spots on commercial air. )
Advice Find Oncoligist in a Cancer hospital.
Please let me know how he is doing. I believe in miracles

jenene
Posts: 40
Joined: Oct 2010

We are doing fairly well although he had some ascites build up. The results came back with cancer cells in it. Not sure where to go from here. Every website I read has bad news everwhere. I cannot give up hope but it is so hard to wonder if this will be the last Christmas I get to celebrate with him.

tuffoldbird
Posts: 7
Joined: Sep 2010

Oh, Jenene, that is not at all what I wanted to hear from you! I pray that the chemo starts to do its magic soon. I could tell by the second treatment that the tumor had been affected, as I could swallow a little soft food again. I had some "free fluid" in my pelvic area, but it went away at some point during chemo.

What drugs are they giving him? Has his CEA come down at all? How are his blood counts holding up?

Keep the faith! Today is my Cancerversary - one year after a terminal diagnosis, and I am looking forward to a trip to Costco to buy Holiday baking supplies, cooking our Thanksgiving dinner, and putting up the big Christmas tree this year instead of the little table tree we settled for last year. Feeling great, gaining weight, and enjoying every day. I know the statistic that scared me the most was that only 2.9% of Stage IV patients are alive one year after diagnosis. I'm counting on your husband to join me in the Top 3% of our Class!

Sandy

jenene
Posts: 40
Joined: Oct 2010

Well his CA-19 count is down by half which is great. Hopefully the ascites will not come back anymore. They have him on Oxiplatin (sp?), Epirubicin, and Xeloda. He seems to be doing well right now I just worry about what the future will bring. The statistics are horrible. Having the doctor say 1-2 years just doesn't seem right to me. Wed. is round 3 of chemo and Dec. 13th is the CT scan so I guess we will see from there what things look like. Thanks for your hope I think about you every day.

liveinhope
Posts: 83
Joined: Mar 2010

Hi Jenene,I am here for my son with linitus plastica type of stomach cancer diagnosed in July 2009.I have stopped bothering (most of the time)about the 5-year survival stats.For one I think they are not updated for the last few years and chemo has changed.Your husband is young and hopefully,like my son,he will tolerate aggressive chemotherapy.Keep heart,things will get better.My love and good wishes to your family.
Nisha

liveinhope
Posts: 83
Joined: Mar 2010

Hi Jenene,I am here for my son with linitus plastica type of stomach cancer diagnosed in July 2009.I have stopped bothering (most of the time)about the 5-year survival stats.For one I think they are not updated for the last few years and chemo has changed.Your husband is young and hopefully,like my son,he will tolerate aggressive chemotherapy.Keep heart,things will get better.My love and good wishes to your family.
Nisha

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