Sophomore Class Update
Tonight John made dinner (first time in months) Baked Chicken with rice and broccoli and stove top stuffing he ate a good amount and I made him a milkshake later in the evening. He is trying to eat as much as possible but still has pain. I think he is having less pain but the changes are so subtle that I am not sure he realizes that he is feeling a little bit better; he did tell me tonight at dinner that this is the first day he did not take an afternoon nap so it looks like there is a little progress.
The next couple of days as John waits for the testing to start I will work on getting authorization process rolling for surgery at Moffitt. I will keep everyone posted as we move along in the process. I love that you are all here and that we are all each other’s cheerleaders!
Erica
Wife of John
T-3, N-1, M-0
Comments
-
Sounds like you all are
Sounds like you all are doing all the right things. My husband was extremely fatigued after radiation completion. Although there is a little improvement in appetite and feeling better before surgery, don't be discouraged. After the surgery and several months to get used to eating slower, more frequently, smaller portions, etc., life gets back to normal. It took my husband about seven months. He has felt so good in the 15 months since surgery that I even got a little aggravated with something he did. I laughed at myself when I did. How soon we forget. It reminded me of a friend who was treated for melanoma. He said he knew he was better and things were okay because his wife finally got angry with him. Each one measures progress in one's individual way. Good luck on your continuing treatment.0 -
Keep Eating!
John and Erica-
It sounds like things are goin well! Good luck on all the approvals. It's a shame that it has to come down to things like that. I have a few Doc friends and they all say thaat NUTRITION plays a huge part in the body's ability to ward off illness.
I don't know why, but I love to hear what people are eating. I'm hungry for stovetop stuffing now...
Good luck on your scans!
Jeff
dx 5/9
T3,n0,m00 -
Be Neat to Meet
Erica and John,
I also have an appointment with Dr Meredith on the 17th. It'd be cool if we could meet up. I think mine's in the morning around 9am.
I was supposed to have a PET on the 15th but got word yesterday that my insurance didn't approve it. I have a CT on the 16th. I don't know what the lack of a PET scan will do as far as the surgery. The appeals process for the insurance company can take up to two months.
I keep telling myself...."one day at a time.
Michael Daniels T3N0M0
Brandon, FL0 -
I guess we are sophomore too
Hi Erica,
We have a similar story except my husband Charlie diagnosis Feb 2011. He completed 32 days of radiation and 2 rounds of CIS/5Fu 94 hours each.
MIE esophagectomy on May 27th-pathology is completely clear!
He now doing 2 round of 6hour adjunct chemo therapy and this is the hardest part for him.
I am having the most trouble with eating issues and getting used to a husband that is 30 pounds thinner!
My advise to you is to keep going and keep your life as normal as possible
We have 2 sons 20 and 18 who have taken this the hardest.
Janet0 -
Janet, you and your husband are graduates!!Janet Runge said:I guess we are sophomore too
Hi Erica,
We have a similar story except my husband Charlie diagnosis Feb 2011. He completed 32 days of radiation and 2 rounds of CIS/5Fu 94 hours each.
MIE esophagectomy on May 27th-pathology is completely clear!
He now doing 2 round of 6hour adjunct chemo therapy and this is the hardest part for him.
I am having the most trouble with eating issues and getting used to a husband that is 30 pounds thinner!
My advise to you is to keep going and keep your life as normal as possible
We have 2 sons 20 and 18 who have taken this the hardest.
Janet
Hi Janet,
It is kind of funny that something said as a throw away comment about feeling like the new freshman class became a way for all us newbies to bond over this new thing (EC) in our lives. Technically speaking you guys have had your surgical graduation and that must be a fantastic feeling!!! There are a lot of us both patients and caregivers on here that are hoping to have surgery very soon. I think my count for families awaiting word on surgery is somewhere around 5 or 6, and all of us pretty much falling within the next month for PET/CT scans. I am praying for all of us that we can "graduate" soon.
Thanks for sharing your husbands story, it is always encouraging to hear from others who are a few steps ahead in treatment, it gives us something to look forward to. Can I ask why your husband is receiving adjuvant chemotherapy if the path report was clear, is it just to be certain they got it...mop up chemo? Our surgeon has said he suggests that for all EC patients no matter the path report, just trying to gauge if that is something others are hearing too!
Again I am really happy to hear from another family who fighting the good fight, although I am sorry you have to go through this at all! This must be very hard on your sons, but try to keep them looking on the bright side, their father is very blessed to be able to have the surgery. What stage was your husband at diagnosis?
Niki
Wife to Jeff T2N1M00 -
I guess we are graduates but now the recovery begins!NikiMo said:Janet, you and your husband are graduates!!
Hi Janet,
It is kind of funny that something said as a throw away comment about feeling like the new freshman class became a way for all us newbies to bond over this new thing (EC) in our lives. Technically speaking you guys have had your surgical graduation and that must be a fantastic feeling!!! There are a lot of us both patients and caregivers on here that are hoping to have surgery very soon. I think my count for families awaiting word on surgery is somewhere around 5 or 6, and all of us pretty much falling within the next month for PET/CT scans. I am praying for all of us that we can "graduate" soon.
Thanks for sharing your husbands story, it is always encouraging to hear from others who are a few steps ahead in treatment, it gives us something to look forward to. Can I ask why your husband is receiving adjuvant chemotherapy if the path report was clear, is it just to be certain they got it...mop up chemo? Our surgeon has said he suggests that for all EC patients no matter the path report, just trying to gauge if that is something others are hearing too!
Again I am really happy to hear from another family who fighting the good fight, although I am sorry you have to go through this at all! This must be very hard on your sons, but try to keep them looking on the bright side, their father is very blessed to be able to have the surgery. What stage was your husband at diagnosis?
Niki
Wife to Jeff T2N1M0
Hi Niki,
Thanks for your encouraging words...you are right we are graduates but now the recovery part is just as hard. Charlie was staged 3N1MO but the tumor was in between what they concider 2 and 3 because it was enlongated. His oncologist is doing just that "mop up" chemo.
But this chemo really wiped him out. I don't know if it was the difference in his new stomach or what--terrible diarrhea/dehydration. But he got through and now is doing great.
Eating will be an issue but he is determined to maintain his weight. Tonight he actually did a small work out with our son.
I am soo happy to discuss this with someone who knows what it is like.
Janet0 -
Eatingjthomas233 said:Keep Eating!
John and Erica-
It sounds like things are goin well! Good luck on all the approvals. It's a shame that it has to come down to things like that. I have a few Doc friends and they all say thaat NUTRITION plays a huge part in the body's ability to ward off illness.
I don't know why, but I love to hear what people are eating. I'm hungry for stovetop stuffing now...
Good luck on your scans!
Jeff
dx 5/9
T3,n0,m0
Jeff,
I always have to watch my weight and I Love stovetop stuffing; I have to use all of my willpower not to eat everything John is eating. We went out to eat last night and he ate two pork chops, mashed potatoes and for desert ordered chocolate pecan pie (he NEVER ate desert before EC) & he is always offering me "bites” I want him to gain weight NOT me, LOL. He also is back at the gym, which I think is good for him both mentally and physically.
Progress without fear Power in our purpose!
Thanks for the support
Erica0 -
One Day at a Time!!!!hopper52 said:Be Neat to Meet
Erica and John,
I also have an appointment with Dr Meredith on the 17th. It'd be cool if we could meet up. I think mine's in the morning around 9am.
I was supposed to have a PET on the 15th but got word yesterday that my insurance didn't approve it. I have a CT on the 16th. I don't know what the lack of a PET scan will do as far as the surgery. The appeals process for the insurance company can take up to two months.
I keep telling myself...."one day at a time.
Michael Daniels T3N0M0
Brandon, FL
Michael,
John’s appointment is at 11:00 AM so we might run into you I will look for you at the clinic. What insurance do you have? Why did they deny the Pet/CT? I work in the medical imaging business so I might be able to give you a little guidance regarding authorization. Send me private message if you want not sure if I can help but I will try.0 -
Sophmore about to move on to Junior ClassNikiMo said:Janet, you and your husband are graduates!!
Hi Janet,
It is kind of funny that something said as a throw away comment about feeling like the new freshman class became a way for all us newbies to bond over this new thing (EC) in our lives. Technically speaking you guys have had your surgical graduation and that must be a fantastic feeling!!! There are a lot of us both patients and caregivers on here that are hoping to have surgery very soon. I think my count for families awaiting word on surgery is somewhere around 5 or 6, and all of us pretty much falling within the next month for PET/CT scans. I am praying for all of us that we can "graduate" soon.
Thanks for sharing your husbands story, it is always encouraging to hear from others who are a few steps ahead in treatment, it gives us something to look forward to. Can I ask why your husband is receiving adjuvant chemotherapy if the path report was clear, is it just to be certain they got it...mop up chemo? Our surgeon has said he suggests that for all EC patients no matter the path report, just trying to gauge if that is something others are hearing too!
Again I am really happy to hear from another family who fighting the good fight, although I am sorry you have to go through this at all! This must be very hard on your sons, but try to keep them looking on the bright side, their father is very blessed to be able to have the surgery. What stage was your husband at diagnosis?
Niki
Wife to Jeff T2N1M0
Niki,
I love reading your posts you sound (in writing, lol) so up beat! I have found so much information (William & Loretta you are the BEST) and comfort on this site I was a mess when John was first diagnosed and without this site I don’t think I would have made it this far. Everyone that post their story helps in one way or another and I appreciate the support that I have received here.0 -
PET/CTEricalynn said:One Day at a Time!!!!
Michael,
John’s appointment is at 11:00 AM so we might run into you I will look for you at the clinic. What insurance do you have? Why did they deny the Pet/CT? I work in the medical imaging business so I might be able to give you a little guidance regarding authorization. Send me private message if you want not sure if I can help but I will try.
They approved the CT scan. Just did not approve the PET scan based on "PET and PET/CT for the diagnosis, staging, re-staging, and monitoring of treatment of gastric cancer is unproven."
My insurance is Tricare Prime (Humana Military)
They gave me reference from the Tricare policy manual.
I think maybe something in the verbage of the request for authorization may have had something to do with it.
In any case, I've contacted both Dr Meredith's nurse and Dr Hoffe's (radiation oncologist ) office to see what happens next. I had no nodal involvement on the initial diagnosis so maybe Dr Meredith will be willing to do the surgery based on the CT results. It's a definite that the tumor is shrunken or gone because I can swallow anything now.
Approeciate any advice you may be able to give.
Michael Daniels T3N0M0
Brandon, Fl0 -
Insurance and PET scanhopper52 said:Be Neat to Meet
Erica and John,
I also have an appointment with Dr Meredith on the 17th. It'd be cool if we could meet up. I think mine's in the morning around 9am.
I was supposed to have a PET on the 15th but got word yesterday that my insurance didn't approve it. I have a CT on the 16th. I don't know what the lack of a PET scan will do as far as the surgery. The appeals process for the insurance company can take up to two months.
I keep telling myself...."one day at a time.
Michael Daniels T3N0M0
Brandon, FL
We had a similar experience. Our BCBS will only pay for one PET scans per year. When insurance denied the PET scan, even after appeal, our surgeon said the CT scan pre surgery was fine to do. Surgery happened on schedule. One year since surgery on August 16 and my husband just had his CT scan and results were NED! Linda0 -
One day at a timeJanet Runge said:I guess we are graduates but now the recovery begins!
Hi Niki,
Thanks for your encouraging words...you are right we are graduates but now the recovery part is just as hard. Charlie was staged 3N1MO but the tumor was in between what they concider 2 and 3 because it was enlongated. His oncologist is doing just that "mop up" chemo.
But this chemo really wiped him out. I don't know if it was the difference in his new stomach or what--terrible diarrhea/dehydration. But he got through and now is doing great.
Eating will be an issue but he is determined to maintain his weight. Tonight he actually did a small work out with our son.
I am soo happy to discuss this with someone who knows what it is like.
Janet
I can't imagine how hard it must have been on your husband's body to go through chemo after surgery, or how hard it was for you to watch him go through this. We just finished chemo and radiation. Not an enjoyable time, but Jeff is still fairly strong right now, I can't imagine what chemo will be like if he has to do it after surgery. But, god willing he will have the surgery, and he is already committed to doing whatever it takes to beat this cancer. It sounds like your family is coming out the other end of a very challenging time, I am putting it lightly right? You should all pat yourself on the backs as I think you have overcome some amazing obstacles. Remember back to when you first heard the diagnosis, I bet you couldn't even imagine getting to where you are today. I know that I thought chemo and radiation would never end, and here we are today awaiting a verdict on surgery. In fact we are going to a Philadelphia Eagles game tomorrow...take that cancer!!
It is really easy to get wrapped up in everything and forget to take every day as it come. I think it is just as easy to forget where you came from and what you overcame to get here. I think you can have a small sigh of relief now and a big family hug!! I am glad you found this group for support, I know how lonely it can feel when your loved one has EC. But, you can see here there are many people living with EC and beating EC!!
Niki0 -
Ericalynn said:
Sophmore about to move on to Junior Class
Niki,
I love reading your posts you sound (in writing, lol) so up beat! I have found so much information (William & Loretta you are the BEST) and comfort on this site I was a mess when John was first diagnosed and without this site I don’t think I would have made it this far. Everyone that post their story helps in one way or another and I appreciate the support that I have received here.
The funny thing is I was a pretty pessimistic person before Jeff was diagnosed, something about hearing the love of your life has cancer initiates that fight or flight reaction in us. For me the fight includes being as positive as possible! Don't get me wrong I cried for about two weeks straight and thought that my world was completely collapsing in on me. But, I couldn't let Jeff see all of that, it would have tanked his spirits. Honestly Jeff is even more positive than me, I don't think that for one minute he has thought he isn't going to beat this. So if the patient can keep a smile on their face I certainly can give it my best too!!
I have a new motto that I read somewhere, but can't remember now where that was. "Worrying about tomorrow ruins today" None of know how much time we have left. I could get hit by a bus tomorrow but I don't walk around all of the time worrying about that, so I am not going to let myself go there anymore with this disease. I don't know what tomorrow holds, but I am sure not going to let that ruin the time I am spending with my loved ones today. Anyway, you didn't ask for my personal theories on life, but I shared them anyway
Keep smiling,
Niki0 -
Ericalynn said:
Sophmore about to move on to Junior Class
Niki,
I love reading your posts you sound (in writing, lol) so up beat! I have found so much information (William & Loretta you are the BEST) and comfort on this site I was a mess when John was first diagnosed and without this site I don’t think I would have made it this far. Everyone that post their story helps in one way or another and I appreciate the support that I have received here.
The funny thing is I was a pretty pessimistic person before Jeff was diagnosed, something about hearing the love of your life has cancer initiates that fight or flight reaction in us. For me the fight includes being as positive as possible! Don't get me wrong I cried for about two weeks straight and thought that my world was completely collapsing in on me. But, I couldn't let Jeff see all of that, it would have tanked his spirits. Honestly Jeff is even more positive than me, I don't think that for one minute he has thought he isn't going to beat this. So if the patient can keep a smile on their face I certainly can give it my best too!!
I have a new motto that I read somewhere, but can't remember now where that was. "Worrying about tomorrow ruins today" None of know how much time we have left. I could get hit by a bus tomorrow but I don't walk around all of the time worrying about that, so I am not going to let myself go there anymore with this disease. I don't know what tomorrow holds, but I am sure not going to let that ruin the time I am spending with my loved ones today. Anyway, you didn't ask for my personal theories on life, but I shared them anyway
Keep smiling,
Niki0 -
SmilingNikiMo said:
The funny thing is I was a pretty pessimistic person before Jeff was diagnosed, something about hearing the love of your life has cancer initiates that fight or flight reaction in us. For me the fight includes being as positive as possible! Don't get me wrong I cried for about two weeks straight and thought that my world was completely collapsing in on me. But, I couldn't let Jeff see all of that, it would have tanked his spirits. Honestly Jeff is even more positive than me, I don't think that for one minute he has thought he isn't going to beat this. So if the patient can keep a smile on their face I certainly can give it my best too!!
I have a new motto that I read somewhere, but can't remember now where that was. "Worrying about tomorrow ruins today" None of know how much time we have left. I could get hit by a bus tomorrow but I don't walk around all of the time worrying about that, so I am not going to let myself go there anymore with this disease. I don't know what tomorrow holds, but I am sure not going to let that ruin the time I am spending with my loved ones today. Anyway, you didn't ask for my personal theories on life, but I shared them anyway
Keep smiling,
Niki
Niki,
I love your personal theories on life, good stuff! My slogan is fear is in the future. Like you said we have NO idea what will happen fearing what is going to happen a head of time just ruins today. I will say I have always been the optimist and John more the pessimist but the first couple of weeks I was not feeling optimistic. I too felt I could not share my fears with John. If he sees any fear or worry in my eyes it pains him I can see it in his eyes (always even before EC). John is not the best communicator & is not really talking about what he is feeling. That is one of the reasons why this site has been such a help to me. So keep on posting and I will keep on reading. I LOVE football, I am on an all girls (or should I say Women) Fantasy football league. The Draft for the league is next week. I still plan on playing I figure that I can watch football and set my line up while John is home recovering from surgery. We can watch football together. Our home team is the Tampa Bay Buccaneers the Bucs season last year was better (than recent years) so I am looking forward to a winning season (everyone is a winner before the season starts) LOL! I will be watching football tomorrow night too. The Monday night pre game crew are on @ 7 PM @ 8PM the game on ESPN is Seahawks/Chargers! The Bucs play Friday night so I have something to look forward to YEA!!!! Enjoy the Eagles game!0 -
PET/CThopper52 said:PET/CT
They approved the CT scan. Just did not approve the PET scan based on "PET and PET/CT for the diagnosis, staging, re-staging, and monitoring of treatment of gastric cancer is unproven."
My insurance is Tricare Prime (Humana Military)
They gave me reference from the Tricare policy manual.
I think maybe something in the verbage of the request for authorization may have had something to do with it.
In any case, I've contacted both Dr Meredith's nurse and Dr Hoffe's (radiation oncologist ) office to see what happens next. I had no nodal involvement on the initial diagnosis so maybe Dr Meredith will be willing to do the surgery based on the CT results. It's a definite that the tumor is shrunken or gone because I can swallow anything now.
Approeciate any advice you may be able to give.
Michael Daniels T3N0M0
Brandon, Fl
Michael,
I am not sure why the diagnosis is gastric cancer (stomach) . They should use Esophagus cancer as the diagnosis. Most insurance companies follow Medicare guidelines. Esophagus is covered for Subsequent Treatment Strategy (includes Treatment Monitoring, Restaging). Is there someone you can call regarding benefits? If it is because of diagnosis you should be able to get an order with esophageal cancer diagnosis & this would be for treatment monitoring (post treatment) restaging before surgery. I would call and ask if the diagnosis is the reason. TRI-Care is Military so I would assume they follow Medicare Guidelines (both federal government) but you know what they say about assuming. Well at least you can start with the diagnosis and see what happens. Let me know
Erica0 -
My mother has always been aNikiMo said:
The funny thing is I was a pretty pessimistic person before Jeff was diagnosed, something about hearing the love of your life has cancer initiates that fight or flight reaction in us. For me the fight includes being as positive as possible! Don't get me wrong I cried for about two weeks straight and thought that my world was completely collapsing in on me. But, I couldn't let Jeff see all of that, it would have tanked his spirits. Honestly Jeff is even more positive than me, I don't think that for one minute he has thought he isn't going to beat this. So if the patient can keep a smile on their face I certainly can give it my best too!!
I have a new motto that I read somewhere, but can't remember now where that was. "Worrying about tomorrow ruins today" None of know how much time we have left. I could get hit by a bus tomorrow but I don't walk around all of the time worrying about that, so I am not going to let myself go there anymore with this disease. I don't know what tomorrow holds, but I am sure not going to let that ruin the time I am spending with my loved ones today. Anyway, you didn't ask for my personal theories on life, but I shared them anyway
Keep smiling,
Niki
My mother has always been a worrier. She worries about everyone in our whole family enough for all of us! Several years ago I found a Mary Engelbreit card that I bought for her to keep by her bathroom mirror. It said "Worrying does not empty tomorrow of its troubles, It empties today of its strength" At the time I bought 2 of the cards intending to send the second one off to a friend. Well, I never got around to it and several months ago I stumbled across the extra card. I now have it in a visible place in my home where I read it every day. That's not to say that I go around with rose colored glasses on, or pretend that everything is hunky dory, but I refuse to let this disease take the strength from me that I need to research everything I can find, to be an advocate for those who suffer with EC, and to help my husband in any way I can. We all need all the strength we can get to fight this beast of a disease.
Cheryl0
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