Not sure what to expect!!!
Thanks,
Susie
Comments
-
Welcome
Susie,
Sorry you've had to join this website because of your husbands cancer. But you'll be glad you did, because everyone on here is so supportive and willing to listen to you any time. Sometimes it's so nice to vent to someone you don't know, but then end up feeling like they are part of your family. Take care & good luck to your husband. "Carole"0 -
Thank you3Mana said:Welcome
Susie,
Sorry you've had to join this website because of your husbands cancer. But you'll be glad you did, because everyone on here is so supportive and willing to listen to you any time. Sometimes it's so nice to vent to someone you don't know, but then end up feeling like they are part of your family. Take care & good luck to your husband. "Carole"
Thank you so much. I'm not sure really how to utilize the sight yet, but I'm sure within the next few months, I will be a pro at it.
I read so many different websites and all of them say something different on what to expect and how treatments will go. And some of the websites are so depressing and scary that I never know what to read and what not to read. I want to be educated in the whole process which is why I joined CSN. I thought the best information I can get will be from other people or family members who are experiencing or have experienced what we will be going through.
The statistic given to us was if he made it through treatment...and then if he made it through surgery...he has a 25% chance to make it 5 years. But NO ONE has been able to answer me... What is the statistic of stage IIIa patients that are strong, healthy, and only 38 years old?
Thanks Carole for making me (us) feel welcome.
Susie0 -
welcome
I'm fairly new on here, but have found so much advice and support. My father was diagnosed we Stage IIB in Oct 2010. He sailed through chemoradiation (for the most part) and thru his MIE. He has been an inspiration to fellow EC sufferers here in our small town. He got his inspiration from William and the other stories that I tell him about. I hope your husband has great success with little to no side effects - and follow the advice of those that have traveled this road before/with you.
Danielle0 -
questionsdlrepic said:welcome
I'm fairly new on here, but have found so much advice and support. My father was diagnosed we Stage IIB in Oct 2010. He sailed through chemoradiation (for the most part) and thru his MIE. He has been an inspiration to fellow EC sufferers here in our small town. He got his inspiration from William and the other stories that I tell him about. I hope your husband has great success with little to no side effects - and follow the advice of those that have traveled this road before/with you.
Danielle
Thank you Danielle
Sorry to hear about your dad...however, it sounds like he is a trooper!!! Do you know what kind of chemo he took? When was his MIE? and how is he feeling today?
Did he lose a lot of weight? Any special foods you gave him at the beginning of treatment to keep his weight up??
I just have soo many questions... but glad to know that there are now people around to help answer them. :-)
Susie0 -
Hi Susie
Hi Susie, I remember, so well, being right where you are at today. I, too, read, studied, absorbed, everything I could, and maybe too much at times. What I read scared me. You will be so happy to have found this sight at this early point in the diagnosis and treatment. First, so much of what you read is old. Stats are old, treatments are evolving, and surgeries have really improved. The MIE is the way to go if at all possible, not all doctors do the MIE. You will need to ask.
My husband was diagnosed March 31, 2010. After chemo, chemo/radiation, and a 6 week resting period he had surgery on Aug 16, 2010 at Mayo Clinic in Rochester. He was released on Aug 20 and then did the rest of his healing at home. He was originally staged as T3N1MO, and at surgery was T2N1MO. 27 lymph nodes were removed and only 1 had scattered cells, so he did post-op chemo. Original regimen was Cisplatin/Irinotecan, and follow up with the Xelox regimen. He was 56 at the time of diagnosis, in good health, and the doctors would always say it was a big plus to start out in good shape to help you get through everything. One reason he had a strong post op chemo regiment was they thought he could handle it, even after all he had been through.
You will find so much help on this site. People here have either been dianosed with EC theirself, are caregivers, spouses, relatives, or friends. There is so much helpful information here and people who have already experienced what you are going through. There is comfort in not feeling like you are all alone. I would say the best thing is to always feel ok with whatever you are doing and if ever in doubt persue it. 2nd opinions are important and should be acceptable to any doctor you are dealing with.
Almost one year out and things are returning to a "new normal". Faith was our base, and we feel so blessed to be here today. Faith was our peace amist the storm. Our 4th grandchild was born during all of this, and we have another coming in April. We are enjoying being grandparents even more now, and have learned not to just take things for granted. We cherish each day and each moment that we are in so much more. Next scan April 1st, not too early for a little scanxiety! Linda0 -
My Experience So Far
Hi Susie - I have similar cancer, the tumor site is just below the GE junction entrance to my stomach. I went through EOX chemotherapy last summer that shrank the tumor by half but didn't kill it. Due to radically conflicting opinions on the type of surgery, I deferred the surgery and elected to do the same chemo/radiation therapy of my esophagus and stomach areas. I completed the radiation on January 17th but the last 3 weeks were very painful and it was very hard to swallow as everything felt burned inside. I had to use magic mouthwash and pain medication just to be able to eat and drink fluids and it was still very tough. At the end of my last week of radiation I went in and got IV fluids twice because I couldn't drink enought fluids to keep hydrated - but it made me feel SO much better and I highly recommend it if Brendon can't drink enough water due to painful swallowing. Now the GOOD NEWS, I am now 5 weeks out and doing very well, I have no pain at all, no vomiting, gaining weight and feel good again. The best way I found to to deal with radiation fatigue is to dress warmly and get out and do 10-15 minutes walks, it helped me regain my energy and mades a world of difference in recovering. My Oncologist recommended I take L-Glutamine, which is a protein supplement that helps rebuild your esophagus, stomach and intestinal lining, as well as boost your immune system and rebuild muscle tissue affected by radiation and chemotherapy. I bought 1000 mg tablets over the counter from the health food store and would dissolve one a day in water and drink it. I found L-Glutamine to be very helpful and experienced NO side effects from it. Let Brendon know know he WILL GET BETTER after the radiation part is over, just keep eating a soft diet and drink as much fluid as possible. My Oncologist recommended waiting 2 months to let everything heal and calm down from the radiation before getting my follow-up PET scan at the end of March. If the cancer is declared dead, then we will discuss next steps. Click my user name to see a book I highly recommend reading. My best to you both, Keith0 -
My husband is 37
Susie, I am sorry to hear about your husband's diagnosis. There are quite a few people here that are fairly young and were in good health prior to the diagnosis.
My husband, Tom, was diagnosed on December 8, 2010 with Stage 3 EC (T3 N1 M0). He is 37 years old with no risk factors (non-smoker, drinking only socially, tall and skinny, has always been a health fanatic in terms of food choices, never had any trouble with acid reflex). When we got the news we were devastated and angry - it is not fair! We did not know what to do and what to expect. You are right - all the info you can find online is depressing and offers little hope. I am glad I was able to find this site and read about other people's experience. Eventually we had to get ourselves together, stopped crying and being miserable, and started thinking positively. After all Tom was still very much alive, and we had to focus on keeping him this way! Setting up a treatment routine is very helpful. Getting enjoyment from life is necessary - we went to some concerns, saw movies together, visited friends.
Tom is getting treatment at Memorial Sloan Kettering. He has finished the first phase of chemo and is now doing more chemo plus daily radiation. He reacts pretty good to the treatment with significant reduction in the size of the tumor. Of course the treatment is harsh, but his reaction is not as bad as that of many other patients we've seen. Being younger and in otherwise good health helps a lot.
Stay strong! Get yourself together and push forward.
Olya0 -
Hi Susie, Wecome to our
Hi Susie, Wecome to our family. I am a stage 111 survivor. I was diagnosed in nov.'07, with chemo and surgery in may'08. My dr. didn't do radiation. My test are still showing I am cancer free.I was 64, but in reasonably good health.
Remember one thing as you start this journey, no two people are alike. Don't pay attention to stats, they're just that-- stats.
We all react to treatment differently. I beleive I did very good, compared to some of the others. Make sure he stays hydrated. I didn't have any trouble with weight loss during chemo, but a lot of others do. Protein drinks, carnation breakfast, milkshakes, and peanut butter are just a few things to help keep the weight up, during treatment..
Ask any questions you want. You are lucky to have found this site so early during treatment. I could have used the support found here, but didn't find the site until a few months ago. You will have the support of so many that have walked in you and your husbands shoes.
Sandra0 -
Hi susie,
I was
Hi susie,
I was diagnosed in august of 09. I had cisplatin and 5FU, with 5 weeks of radiation at the same time. I then had 5 weeks off and had THE surgery. I was diagnosed IIa. I was 47 with my birthday 1 day after the surgery. I was healthy but a little overweight at the time. I lost 50lbs after it was all done, but i have gained 6 back and it has been 15 months since surgery. i would love to answer any questions you may have.
GOOd Luck to your husband, God Bless, cindy0 -
ec cancer stageivb
Hello Susie...sorry to hear about your hubby...i am the daughter and caregiver for my dad who has stage ivb since Novemeber 2010..we have under gone esophageal stent as to removal..and chemo treatments only. However cisplatin and the 5fu has been very kind to him at this point, but has its moments..since dads dx he has only recieved 4 tx due to a set back in platelettes..REMEMBER EACH CASE IS DIFFERENT..Joining this site will be helpful and you both will enjoy your new family...i wish all the luck and prayers..
Always ask questions there is no such question that is a stupid ...
our huggs to u both and feel free to write..love Vera0 -
To Williamvera said:ec cancer stageivb
Hello Susie...sorry to hear about your hubby...i am the daughter and caregiver for my dad who has stage ivb since Novemeber 2010..we have under gone esophageal stent as to removal..and chemo treatments only. However cisplatin and the 5fu has been very kind to him at this point, but has its moments..since dads dx he has only recieved 4 tx due to a set back in platelettes..REMEMBER EACH CASE IS DIFFERENT..Joining this site will be helpful and you both will enjoy your new family...i wish all the luck and prayers..
Always ask questions there is no such question that is a stupid ...
our huggs to u both and feel free to write..love Vera
William - Thank you so much for all the information you provided Brendon and I. I will answer your questions the best I can!
So may I ask the following questions?
1. How did Brendon come to know that he had a problem? Around December, Brendon noticed that he was having a little difficulty in swallowing and seemed to be having a little bit of chest pain here and there. I finally convinced him to make a doctors appt when he kept saying he felt "full" and was burbing a lot. He scheduled an appt with his family doctor for the middle of January. However...the Friday before his appt, he went to the ER because his chest was hurting pretty bad. They ran some blood work, hooked him up to a heart monitor, did some x-rays... 4 hours later, they sent him home and said to follow up w/ his doctor at his Tuesday appt. That Tuesday came and the family dr said they thought he had an esophagial structure and so they ordered an GED and said they might have to stretch out his esophagus if that was what the issued was. On Feb 1st, he had his GED and was told he had cancer. Of course, they did a biopsy and the results were given to us a couple days later...that Yes, Brendon had esophegial cancer.
2. What doctors did you consult? We saw two different oncologists in the Kansas City area and decided to go with Dr. Beeki. We have met wtih a radiologist oncologist(Dr. Townsend) and with the thoraxic surgeon, Dr. Davis.
3. Who are your doctors, and what is their specialty? see above :-)
4. Have you had a SECOND OPINION? we got two opinions from two oncologists..
5. What tests did you have to confirm a cancer diagnosis? Brendon has had 2 CT's, a pet scan, a GED, and an EUS. The EUS confirmed that there is one lymph node just outside of the esophagus that is 95%-99% cancerous as well.
6. What stage of cancer does Brendon have? You say “State III”. Brendon is T3N1M0
Usually it has 3 facets to the stage, such as in my case “T” stands for the extent of the tumor penetration (T3 meaning all 4 layers or walls of the Esophagus have been diseased. Then there is an “N” for nodal involvement. My stage has an “N1” meaning one or more lymph nodes were also carrying the cancerous cells and lastly, “M” stands for metastasis (or spread). My “M” was zero, because the cancer had not spread to “distant lymph nodes or organs”. So my staging was listed as “T3N1M0).
7. Has Brendon had a test for the HER2+ gene that is over expressive and allows cancer cells to multiply more rapidly? No, we have not heard of this, but thankfully with your words of wisdom, we have added to our list of questions for the doctor for tomorrow morning when we meet with him.
8. If he has not been tested, he should have been, because another drug HERCEPTIN should also be being given in addition to the chemo Brendon is scheduled to begin, if he indeed tests “positive”. Every EC patient does not test positive, but often they do. Without this test, one doesn’t know whether or not this gene, which we all have, is malfunctioning. Herceptin will not interact in any way but will work together with the other chemo, to stop the rapid spread of this cancer.
9. Does he have any pre-existing medical conditions? Brendon is 5'11" and weighed about 213. He has been in good health with no other medical conditions. He has lost about 14-15 lbs already...but thankfully, he had a little extra meat on him so the loss isn't detrimental at this point...
10. Does he have a history of smoking or alcohol consumption? Brendon never smoked but chewed tobacco for the past 20 years. He quit chewing a week before his GED. Is alcohol intake was very minimal...an occasional social drinker....maybe once every couple of months, if that....
11. Did you know there are different types of Esophagectomies, each one differing greatly from another? We are so new to this cancer, that we barely know anything....which is why this site as been superb for us!
12. Have you heard of the Minimally Invasive Esophagectomy? No...but I have added it to the list to talk to the surgeon and oncologist about....
13. What kind of insurance do you have, and does it allow travel to wherever the best treatment can be found? We have dual insurance coverage and I'm not sure what or where it covers to be honest with you....
14. Have you been reading this site prior to posting here? I found this site while at work the other day. Brendon and I have a few different struggles besides the cancer itself. He lives in KC, I live in Wichita (about 3 hours away). I have been trying to sell my house and find a job in KC for almost a year now. I have 2 older daughters and then Brendon and I have a little one together...so not only, am I trying to be in KC as much as possible for Brendon...I have to still work in Wichita...and take care of 3 girls in Wichita as well. I come to KC as much as I can but sometimes I can't make it to all his appts with him....which leaves me feeling uneducated and sometimes mentally alone. His parents - who live in Texas - have basically moved into our basement to help him and take him to appointments when I am not here... I joined the site so I can know as much as I possibly need to know and to get support at the times we can not physically be together. I know it's rough on Brendon as well with me not being able to be here all the time...but he is lucky to have his parents around.
15. You stated that you would be having pre-op treatments of Cisplatin and 5-FU. Those are two powerful drugs and often are totally successful in eradicating the tumor. --- This made us both feel good hearing this statement!!
Chemoradiation start tomorrow morning. I pray that the drugs are good to his system and he doesn't experience too many difficulties wtih it...
You are an inspiration and give us great hope. Thank you for all of your postings.. You seem very educated and the willingness to help make this not so scary for everyone on this site. Thank you again for everything...
Susie0 -
Hi Cindycindyhils said:Hi susie,
I was
Hi susie,
I was diagnosed in august of 09. I had cisplatin and 5FU, with 5 weeks of radiation at the same time. I then had 5 weeks off and had THE surgery. I was diagnosed IIa. I was 47 with my birthday 1 day after the surgery. I was healthy but a little overweight at the time. I lost 50lbs after it was all done, but i have gained 6 back and it has been 15 months since surgery. i would love to answer any questions you may have.
GOOd Luck to your husband, God Bless, cindy
THANK YOU CINDY!!
So far Brendon has lost about 15 lbs...we started him on the J-tube feeding on Thursday evening and he has gained a little over a lb already...it was good not to have him get on the scale and see another loss.
How are you feeling?? Now that the surgery has had a little over a year to heal? Did they remove your entire esophagus??
Phone's ringing...more later!
Susie0 -
This comment has been removed by the ModeratorSusie_Brendon said:To William
William - Thank you so much for all the information you provided Brendon and I. I will answer your questions the best I can!
So may I ask the following questions?
1. How did Brendon come to know that he had a problem? Around December, Brendon noticed that he was having a little difficulty in swallowing and seemed to be having a little bit of chest pain here and there. I finally convinced him to make a doctors appt when he kept saying he felt "full" and was burbing a lot. He scheduled an appt with his family doctor for the middle of January. However...the Friday before his appt, he went to the ER because his chest was hurting pretty bad. They ran some blood work, hooked him up to a heart monitor, did some x-rays... 4 hours later, they sent him home and said to follow up w/ his doctor at his Tuesday appt. That Tuesday came and the family dr said they thought he had an esophagial structure and so they ordered an GED and said they might have to stretch out his esophagus if that was what the issued was. On Feb 1st, he had his GED and was told he had cancer. Of course, they did a biopsy and the results were given to us a couple days later...that Yes, Brendon had esophegial cancer.
2. What doctors did you consult? We saw two different oncologists in the Kansas City area and decided to go with Dr. Beeki. We have met wtih a radiologist oncologist(Dr. Townsend) and with the thoraxic surgeon, Dr. Davis.
3. Who are your doctors, and what is their specialty? see above :-)
4. Have you had a SECOND OPINION? we got two opinions from two oncologists..
5. What tests did you have to confirm a cancer diagnosis? Brendon has had 2 CT's, a pet scan, a GED, and an EUS. The EUS confirmed that there is one lymph node just outside of the esophagus that is 95%-99% cancerous as well.
6. What stage of cancer does Brendon have? You say “State III”. Brendon is T3N1M0
Usually it has 3 facets to the stage, such as in my case “T” stands for the extent of the tumor penetration (T3 meaning all 4 layers or walls of the Esophagus have been diseased. Then there is an “N” for nodal involvement. My stage has an “N1” meaning one or more lymph nodes were also carrying the cancerous cells and lastly, “M” stands for metastasis (or spread). My “M” was zero, because the cancer had not spread to “distant lymph nodes or organs”. So my staging was listed as “T3N1M0).
7. Has Brendon had a test for the HER2+ gene that is over expressive and allows cancer cells to multiply more rapidly? No, we have not heard of this, but thankfully with your words of wisdom, we have added to our list of questions for the doctor for tomorrow morning when we meet with him.
8. If he has not been tested, he should have been, because another drug HERCEPTIN should also be being given in addition to the chemo Brendon is scheduled to begin, if he indeed tests “positive”. Every EC patient does not test positive, but often they do. Without this test, one doesn’t know whether or not this gene, which we all have, is malfunctioning. Herceptin will not interact in any way but will work together with the other chemo, to stop the rapid spread of this cancer.
9. Does he have any pre-existing medical conditions? Brendon is 5'11" and weighed about 213. He has been in good health with no other medical conditions. He has lost about 14-15 lbs already...but thankfully, he had a little extra meat on him so the loss isn't detrimental at this point...
10. Does he have a history of smoking or alcohol consumption? Brendon never smoked but chewed tobacco for the past 20 years. He quit chewing a week before his GED. Is alcohol intake was very minimal...an occasional social drinker....maybe once every couple of months, if that....
11. Did you know there are different types of Esophagectomies, each one differing greatly from another? We are so new to this cancer, that we barely know anything....which is why this site as been superb for us!
12. Have you heard of the Minimally Invasive Esophagectomy? No...but I have added it to the list to talk to the surgeon and oncologist about....
13. What kind of insurance do you have, and does it allow travel to wherever the best treatment can be found? We have dual insurance coverage and I'm not sure what or where it covers to be honest with you....
14. Have you been reading this site prior to posting here? I found this site while at work the other day. Brendon and I have a few different struggles besides the cancer itself. He lives in KC, I live in Wichita (about 3 hours away). I have been trying to sell my house and find a job in KC for almost a year now. I have 2 older daughters and then Brendon and I have a little one together...so not only, am I trying to be in KC as much as possible for Brendon...I have to still work in Wichita...and take care of 3 girls in Wichita as well. I come to KC as much as I can but sometimes I can't make it to all his appts with him....which leaves me feeling uneducated and sometimes mentally alone. His parents - who live in Texas - have basically moved into our basement to help him and take him to appointments when I am not here... I joined the site so I can know as much as I possibly need to know and to get support at the times we can not physically be together. I know it's rough on Brendon as well with me not being able to be here all the time...but he is lucky to have his parents around.
15. You stated that you would be having pre-op treatments of Cisplatin and 5-FU. Those are two powerful drugs and often are totally successful in eradicating the tumor. --- This made us both feel good hearing this statement!!
Chemoradiation start tomorrow morning. I pray that the drugs are good to his system and he doesn't experience too many difficulties wtih it...
You are an inspiration and give us great hope. Thank you for all of your postings.. You seem very educated and the willingness to help make this not so scary for everyone on this site. Thank you again for everything...
Susie0 -
???unknown said:This comment has been removed by the Moderator
Hi William -
Okay, didn't know that I was supposed to reply directly to your comment! Still learning the ropes around here.. If you following the string...you will see that I did reply to your letter... Bare with me...I will get the hang of this site before long.
I hope you are enjoying your weekend!
Susie0 -
unknown said:
This comment has been removed by the Moderator
I don't know where to go to activate my private email??? Help! :-)0 -
Look in the Upper Left Hand Corner of your browser windowSusie_Brendon said:email
I don't know where to go to activate my private email??? Help! :-)
Susie,
Look in the upper left hand corner of your browser window (under the American Cancer Society logo). Click on “CSN Email” in the dark red box. This will take you to your private email mailbox.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
14 months since surgerySusie_Brendon said:Hi Cindy
THANK YOU CINDY!!
So far Brendon has lost about 15 lbs...we started him on the J-tube feeding on Thursday evening and he has gained a little over a lb already...it was good not to have him get on the scale and see another loss.
How are you feeling?? Now that the surgery has had a little over a year to heal? Did they remove your entire esophagus??
Phone's ringing...more later!
Susie
I feel great. have to watch how much i eat and sometimes certain things like sugar make me feel sick. I did have my esophegeous removed and part of stomach and 12 lymph nodes. no sign of any cancer since surgery. i went back to work 8 weeks after surgery. i worked preschool and had to have energy to keep up, i did very well. worked 8 hours a day and i still am. i know everyone is different and i thank my family and GOd for my recovery. I do feel great about the fact that when i had chemo i did feel sick at times and vomit, but since chemo no matter how sick i feel i have not had to throw up at all. i dont even know if it would feel different with my new plumbing. so i have not had that happen for 15 months. I wish you well and hope it all goes well for you. cindy0 -
This comment has been removed by the ModeratorSusie_Brendon said:email
I don't know where to go to activate my private email??? Help! :-)0 -
WelcomeSusie_Brendon said:email
I don't know where to go to activate my private email??? Help! :-)
Hello Susie and Brendon,
I have been following your story, and wanted to tell you that you have found the most wonderful cancer site. William is an excellent person to talk to. I was a caregiver for my dad. He passed away on March 9, 2010 from EC. Susie, you are doing a wonderful job. Keep up the good work. Keep doing your homework, and write everything down in a personal journal. You will need to refer back many times. I agree with William, finding a thoracic specialist is top priority. If you are closer to TX, where your parents live, MD Anderson in Houston is excellent. Of course the University of Pittsburgh PA is also very highly recommended! Sometimes you have to travel to get the best treatment, but Brendon's life is well worth the effort. Take a deep breath, take it one day at a time, give yourself some "me" time, ask for help with the girls, take any help that is offered. You do not have to be Super Mom and Super Wife all at the same time. Come here often. Know that we are thinking of you and praying for you both. Keep a positive mind!! Have a strong faith. Peace.
Tina in Va0
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