Stomach cancer at 34: About to start chemo and nervous

Dave,

It is very likely that you are not getting enough calories, especially if you are exercising every day to gain muscle. Have you tried adding protein drinks/protein powders to your diet?

VR
Joe

Hello Juan well sorry to hear about your stomach cancer I also had gastric adenocarcinoma diagnosed in March of 2022 I had 4 rounds of chemo FLOT than a pet scan and my surgeon said chemo really was killing my tumor so he had me do 4 more rounds of chemo FLOT total of 8 I had side affects such as hair loss of course,nausea and nerapathy in my hands and feet than had my surgery which was a total gastrectomy full stomach removal in August it's only been 5 months but I am cancer free so it's all worth it listen to your oncologist keep up on fluids and eating well and try and stay active and a positive attitude it really helps. Before surgery I weighed 190lbs today I am 156lbs and holding my surgeon told be I could loose about 30lbs he was pretty close. I could go on I look at the Mayo Connect every day so I will look forward to your post to see how you are doing take care stay strong. Dave

You can do it, I didn't have your Cancer but had a different kind, side effects are bad, but honestly we get through it, we're here for you & please keep us updated
..
BTW..If you weren't Nervous that wouldn't be Normal..
Hugs 💕

Juan,

I hope you are doing well. If your diagnosis is similar to mine (stage III adenocarcinoma); your journey had just begun and you will have to make some life-style adjustments for the future, even when you are cancer free.

I assumed your first post was Jan 2023 so you probably already had 2-3 chemo treatments by now and find that chemo treatment is not as scary as you first thought. However, chemo treatment is only the beginning. Its purpose is to kill as much of the cancer cells as possible so that surgery can get rid of the rest; in the best case, perhaps surgery is not needed at all.

To help prepare you for the next phase of your treatment if chemo alone is insufficient, I want to share with you my own experience.

I was treated at Mayo, Arizona. I had 8 courses of chemo with FLOT, then a total gastrectomy, which means the entire stomach was removed. The surgeon had told me exactly what would be done to me and the risks involved so I felt very comfortable about the procedure. The surgery, I believed, was over 6 hours long. These days, the technology is getting so good that they did not have to open me up. They only poked a few holes on my abdomen to remove the stomach and rewired my plumbing. This technique reduced risks and speed up recovery. I can tell you that I did not feel a thing during the operation, kudos to the anesthesiologists at Mayo. after the operation, I had all kinds of tubes coming out of my body: a tube in my nose and a bladder on my side to drain the blood inside my body; an IV for medications and fluid; an urinary catheter for the urine. I probably looked worst than I felt. The doctors checked up on me daily and nurses monitored my vitals around the clock and provided me with timely medications and tended to my comfort the whole week I was there. I had blood drawn every 6 hours. A dietician also visited me to discuss my dietary requirements after the surgery. The initial few weeks was mostly liquid diet (protein drinks) then slowly progress to solid food. Overall, I had the best care I can hope for.

Since I had my stomach removed, I have to take vitamin B-12 shots monthly, for life. Also, I could no longer eat the same quantity of food as I did. Some food that I often ate can actually caused me to vomit. I lost a little over 50 lbs since the operation and is now under weight. Even now, two plus years after the operation. I can only consumed a very small amount of food, 2-3 oz of meat and 2-3 oz of vegetable, in one siting. It also took longer for me to eat as I had to chew my food very well and chop it down to small pieces. Since I don't feel hungry anymore, I forgot that I had to eat at least 6 times a day as told by my dietician. Consequently, I find myself underweight. I will ratify this soonest.

Another, perhaps more troubling side effect for me, is peripheral neuropathy in both my hands and feet. I had seen the neurologist and he determined it was caused by the chemo drugs. I was aware of this side effect during the chemo treatments but did not expect it to last this long. As it turns out, it is very tough to treat nerve damages. The healing process is very slow. There isn't a drug you can take to make it go away or to speed up its recovery. Only time will determine whether you will recover, or not. The only thing he could do is to prescribe an ointment to lessen the pain.

Another issue that I want you to be aware is the increased risk of large kidney stone formation. Without a stomach to absorb oxalate, my oxalate level spiked after the surgery which caused large kidney stone formations that got stuck in the ureter. I can tell you that kind of pain once experienced, you will never forget, nor do you want to experience it gain. My urologist had the stones removed via another operation. To prevent the large kidney stone formation to happen again, I have to take vitamin B6 for life and will be meeting with a dietician to work out a diet plan.

Now, this is just my experience and your condition may be different. I hope this information provide you with a little more understanding of what might come next and better prepared for it.

The upside is that cancer is not as scary as it once was. Treatment is getting more effective due to the research being done on the subject so the survival rate is improving. One thing I learned from this experience is that my view on life has changed quite a bit and for the better. Facing your own mortality have a tendency to help focus on what is important in your life. I also think that by having an optimistic outlook in life also help both your recovery and the people around you. So chins up, feel the warmth of the sun, and enjoy what life dishes out.

VR
Joe

Great post, Joe. I appreciate the details about your experience to help others new to stomach cancer. When were first diagnosed? What is your follow up like now? Are followed by Mayo Clinic or locally?

Juan,

I hope you are doing well. If your diagnosis is similar to mine (stage III adenocarcinoma); your journey had just begun and you will have to make some life-style adjustments for the future, even when you are cancer free.

I assumed your first post was Jan 2023 so you probably already had 2-3 chemo treatments by now and find that chemo treatment is not as scary as you first thought. However, chemo treatment is only the beginning. Its purpose is to kill as much of the cancer cells as possible so that surgery can get rid of the rest; in the best case, perhaps surgery is not needed at all.

To help prepare you for the next phase of your treatment if chemo alone is insufficient, I want to share with you my own experience.

I was treated at Mayo, Arizona. I had 8 courses of chemo with FLOT, then a total gastrectomy, which means the entire stomach was removed. The surgeon had told me exactly what would be done to me and the risks involved so I felt very comfortable about the procedure. The surgery, I believed, was over 6 hours long. These days, the technology is getting so good that they did not have to open me up. They only poked a few holes on my abdomen to remove the stomach and rewired my plumbing. This technique reduced risks and speed up recovery. I can tell you that I did not feel a thing during the operation, kudos to the anesthesiologists at Mayo. after the operation, I had all kinds of tubes coming out of my body: a tube in my nose and a bladder on my side to drain the blood inside my body; an IV for medications and fluid; an urinary catheter for the urine. I probably looked worst than I felt. The doctors checked up on me daily and nurses monitored my vitals around the clock and provided me with timely medications and tended to my comfort the whole week I was there. I had blood drawn every 6 hours. A dietician also visited me to discuss my dietary requirements after the surgery. The initial few weeks was mostly liquid diet (protein drinks) then slowly progress to solid food. Overall, I had the best care I can hope for.

Since I had my stomach removed, I have to take vitamin B-12 shots monthly, for life. Also, I could no longer eat the same quantity of food as I did. Some food that I often ate can actually caused me to vomit. I lost a little over 50 lbs since the operation and is now under weight. Even now, two plus years after the operation. I can only consumed a very small amount of food, 2-3 oz of meat and 2-3 oz of vegetable, in one siting. It also took longer for me to eat as I had to chew my food very well and chop it down to small pieces. Since I don't feel hungry anymore, I forgot that I had to eat at least 6 times a day as told by my dietician. Consequently, I find myself underweight. I will ratify this soonest.

Another, perhaps more troubling side effect for me, is peripheral neuropathy in both my hands and feet. I had seen the neurologist and he determined it was caused by the chemo drugs. I was aware of this side effect during the chemo treatments but did not expect it to last this long. As it turns out, it is very tough to treat nerve damages. The healing process is very slow. There isn't a drug you can take to make it go away or to speed up its recovery. Only time will determine whether you will recover, or not. The only thing he could do is to prescribe an ointment to lessen the pain.

Another issue that I want you to be aware is the increased risk of large kidney stone formation. Without a stomach to absorb oxalate, my oxalate level spiked after the surgery which caused large kidney stone formations that got stuck in the ureter. I can tell you that kind of pain once experienced, you will never forget, nor do you want to experience it gain. My urologist had the stones removed via another operation. To prevent the large kidney stone formation to happen again, I have to take vitamin B6 for life and will be meeting with a dietician to work out a diet plan.

Now, this is just my experience and your condition may be different. I hope this information provide you with a little more understanding of what might come next and better prepared for it.

The upside is that cancer is not as scary as it once was. Treatment is getting more effective due to the research being done on the subject so the survival rate is improving. One thing I learned from this experience is that my view on life has changed quite a bit and for the better. Facing your own mortality have a tendency to help focus on what is important in your life. I also think that by having an optimistic outlook in life also help both your recovery and the people around you. So chins up, feel the warmth of the sun, and enjoy what life dishes out.

VR
Joe

Hi Joe

I just wanted to message we I’m trawling through the forums, as my mum has oesophageal-gastric junction adenocarcinoma, t4n2m0. I read you had 8 upfront FLOT cycles prior to surgery, this is what my mum is having as it was so big, and it hadn’t shrunk enough at a specific plane for the surgeon to comfortably operate at the end of cycle 4. I was just wondering, as typically it’s perioperative would you mind telling me why you had 8 upfront yourself? Would it be due to similar reasons?

I had my chemo treatments during the COVID year and the hospital need to limit the operating room use in case of a surge in COVID cases. You may say that I had the cancer treatment at the worst possible time. In any case, I don't think the outcome would be any different. Having 8 consecutive chemo treatments did took a lot out of me in terms of strength and I often felt a bit weak at times. Having a strong family support and an optimistic outlook in life was very helpful to me during that period.

I wish your mom the best. Tell her that I'll say a prayer for her. I am sure there are lots of people like me who are rooting for her so keep on fighting this disease.

Best wishes. J