No Cancer after Diag of Stage IV

I'm posting this for all of you looking for hope.  I am blessed and this has been an amazing journey filled with lots of answered Prayers.

 I am a 46 yr. old male, diagnosed in October 2008 with Stage IV Adinocarcinoma (Stomach Cancer).  The tumor in my stomach was at the esophagial junction and was growing both up the inside of the esophogus and also through the stomach wall.  There were at least three lymph nodes that were biopsied positive for cancer as well.  The Oncologist and Surgeon said that my cancer was inoperable due to the scope or spread of the cancer.

I had gone from 210 lbs. in June to 185 lbs. in September, mostly due to struggling with what I thought was stress related Acid Reflux.  My general practioner had given me protonix to bout the Acid Reflux, but it wasn't helping.  I struggled with eating daily and my energy level was draining fast.

 In October 2008, I started a Chemotherapy regimine of Oxaliplatin, Lucovorin and 5FU (Flouroracil).  Every two weeks I went to the clinic for the Lucovorin and Oxaliplatin, then went home with a pump of the 5FU for the next 46 hours.

After the first round of Chemo, I began to feel better.  The pain of eating was lessened and I gained a little weight back.  My energy slowly returned also.  After three rounds, the PET/CT scan showed considerable shrinkage of the tumor, and less activity in the lymph nodes.  A follow up Ultrasound Endoscopy (and biopsy) found no tumor left inside the stomach or esophogus (but still conciderable wall thickness) and no cancer in the lymph nodes (in fact two were gone completly).  My doctors wanted to move directly to surgury, but I opted to have two more rounds of chemo.  Secretly, I was hoping to avoid the surgery all together.

After the next two rounds, and a follow up PET/CT scan it was determined that the chemo was not reducing the wall thickness and therefore was not being effective anymore.  So, I had the surgery.  My Dr. removed half of my stomach and two inches of my esophogus.  The follow-up biopsy of the removed tissue showed only scar tissue, no cancer was found.  That means that the Chemo was able to completly remove the cancer from my body.

Surgery was Feb. 17, 2009.  I came home 9 days later and yes I even returned to my desk job a week after that.  Eating enough to keep up my weight has been tough, but I have found that if I work on getting a good nights sleep (with no acid reflux) then eating the next day is better.  Still along way away from being back to normal (I'm at 175 lbs. now), but am planning vacations and trips on my Harley this summer.

I hope this story is encouraging.  You can ask me anything and I will honestly share what I know and what I experienced.

That is fantastic news to hear that the chemo addressed the active cancer so effectively.  I am hopeful that you continue to do as well as you have been.  My question to you is what is the plan regarding any additional chemo or have the oncologist decided that it is not required at this point.  My wife had stage IV stomach cancer in March of 07 and was in remission post chemo by Aug of 07, she does, however, remain on chemo treatments today.

 Thanks for the information and congratulations on your success.  My sincere hope that your summer plans go well.

Steve (akamomwithkids)

 

On 3/26/2009 momwithkids wrote:

That is fantastic news to hear that the chemo addressed the active cancer so effectively.  I am hopeful that you continue to do as well as you have been.  My question to you is what is the plan regarding any additional chemo or have the oncologist decided that it is not required at this point.  My wife had stage IV stomach cancer in March of 07 and was in remission post chemo by Aug of 07, she does, however, remain on chemo treatments today.

 Thanks for the information and congratulations on your success.  My sincere hope that your summer plans go well.

Steve (akamomwithkids)

Thanks for the reply Steve,

In fact, my oncologist has not come up with a long term plan yet.  He admits that he is not used to seeing someone respond so well to the Chemo.  I think if the surgery had removed cancerous tissue, then he would of been ready with some standard treatment plan.  With no cancer present and full investigation of my insides done during surgery, he is not sure.

My first response is that, I'm done with treatment.  I don't care what he recommends, I am fine with screening, but no more treatments.

I'm curious as to what the target of the chemo is for your wife.  How does the Dr. know that the treatment is effective if there is no more cancer?  There is a cancer antigen test (CA 19-9) for monitoring of GI cancer, but it isn't widely used in the US.

Thanks again for the reply, and I hope all goes well with your wife's treatments and your family's dealing with it.

Vince

Vince,

Congrats on your successful surgery. It is amazing the number of different outcomes that people fighting this disease can have. I will echo Steve's questions regarding continuing treatment plan, are your CA19-9 (aka tumor markers) levels under 37?

My partner Rick has been battling stage IV, inoperable (no gastrectomy), no mets adenocarcinoma with signet ring since April of 2007, so we are about to pass the two year mark. However, he is still on a regular chemo regimen, just had his 33rd treatment a week ago. His CA19-9 level is now at 233 and very slowly trending upward. We have friends at the cancer center with numbers in the thousands, so we feel the chemo is keeping it in check very well. Like you, our oncologist is now kind of flying by the seat of her pants as she has never had a gastric cancer patient make it anywhere near this long.

Please keep us all posted as time goes by. It sure sounds like you beat the beast all in one fell swoop. What a blessing !!!

Enjoy riding the hog every chance you get, we are having a blizzard here right now.

Ride safe,  Scott.

Your message was very inspiring to me. I am 57, have similar cancer - stomach, stage 4, in the juncture between the esophagus and stomach, lymph node involvement mostly local, but one distant. The distant has no more cancer activity according to the PET scan, but the primary tumor is still showing activity. I will be having another set of scans after one more treatment, but the oxaliplatin was dropped last time due to neuropathy in my fingers and toes and mouth and tongue. It sounds like the ultrasound endoscopy was the right test to see that the cancer was gone. Thanks for writing, I was very encouragaed to hear of a good outcome!!! Jeanne

My Dad was diagnosed with stage IV gastric cancer in Nov 08.  He had a large tumor at the top of his stomach at the esophogeal junction and the PET scan showed two lymph nodes in the upper chest.  He went thru 4 rounds of chemo (5-FU, Cisplatin, and Epirubicin) the latest CT scan shows the tumor is gone and the lymph nodes have also shrunk to very small or disappeared.  Dad is now on maintenence chemo 5-FU every two weeks with a pump he wears for 2 days because the stomach is still thick.  Surgery was discussed and even went for a second opinion about surgery to UW-Madison and since Dad was doing so well eating, was in no pain, and even gaining some weight back the doctor there told him to enjoy his life that the surgery would not significantly improve his life expectancy.  Dad was extremely happy with her opinion.

My Dad is 81y/o but was very healthy prior to this cancer.  Last summer he golfed 18 holes every day weather permitting.  He is outwardly optimistic and said he read somewhere on his computer he has a 70 percent chance of beating this thing.  I don't discourage or contradict whatever hope he has because positive attitude helps him fight.

I am the one who needs the encouragement and needs to read positive outcomes to this cancer.  I want to golf with Dad this summer.  I need to stop fearing every little stomachache and pain he has.  My Dad and Mom divorced 4 years ago not because they stopped loving each other but because they stopped communicating with each other and couldn't resolve conflicts.  They are both very stubborn and this divided them.  Dad's illness has pulled them back together and they are happier than I have ever seen them in my life.  I like to think this also contributes to his continued recovery.

Please keep posting encouraging news, I need it so I can enjoy my time with my family and not keep looking the the proverbial "shoe to fall" 

Thanks

 

 

On 3/26/2009 Vinyt11 wrote:

 

On 3/26/2009 momwithkids wrote:

That is fantastic news to hear that the chemo addressed the active cancer so effectively.  I am hopeful that you continue to do as well as you have been.  My question to you is what is the plan regarding any additional chemo or have the oncologist decided that it is not required at this point.  My wife had stage IV stomach cancer in March of 07 and was in remission post chemo by Aug of 07, she does, however, remain on chemo treatments today.

 Thanks for the information and congratulations on your success.  My sincere hope that your summer plans go well.

Steve (akamomwithkids)

Thanks for the reply Steve,

In fact, my oncologist has not come up with a long term plan yet.  He admits that he is not used to seeing someone respond so well to the Chemo.  I think if the surgery had removed cancerous tissue, then he would of been ready with some standard treatment plan.  With no cancer present and full investigation of my insides done during surgery, he is not sure.

My first response is that, I'm done with treatment.  I don't care what he recommends, I am fine with screening, but no more treatments.

I'm curious as to what the target of the chemo is for your wife.  How does the Dr. know that the treatment is effective if there is no more cancer?  There is a cancer antigen test (CA 19-9) for monitoring of GI cancer, but it isn't widely used in the US.

Thanks again for the reply, and I hope all goes well with your wife's treatments and your family's dealing with it.

Vince

Vince:

My wife is currently on Xeloda (aka capecitabine) which is a pill.  She was on 3,000mg/day but just recently reduced it to 2,000mg/day to try to reduce some of her fatigue and the peeling and discomfort in her feet. 

The target for her treatment is to keep any possible cancer cells that have not yet been killed from taking a hold in her body.  To be honest, they do not know what to do (we are treated in Hartford but worked in conjunction  with recommendations from Dr. Manish Shah at Sloan Kettering in NY).  They are impressed that she has been on chemo for over two years at this point (she is 44 years old).  We all continually battle with the decision to stop and wait and see but have decided against that plan as we feel that the continued treatment is better than having to go through the whole chemo treatment regimen again.  They dont know and we do not know either.  The pills are easy for her to take and really have very limited side effects.  They work for her and they give us comfort that we continue to fight it (even though based on scans there is nothing to fight). 

Diagnosed in March of 07 the two small tumors were gone by Aug 07; she has remained on chemo since then (6 month - ECF, 6 months Oxaliplatin/5FU and a year on the Xeloda).

We are blessed to be in the position that we are in and plan to continue treatment for as long as she can withstand it. 

Steve (aka momwithkids)