Newly diagonosed and so very scared
Comments
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I am just a few weeks ahead of you
Hi,
I am just weeks ahead of you with similiar conditions.
William will seek you out. You will be warmly surprised with the energy and caring that you will get from him. He is not an expert, he's a patient, just like us. But he is smart and wise and the truth, learned by his own force of will. But he is a fighter and learned a lot, and he seems to have suceeded for a long time.
Many things will change your life, this is sure one. But I can tell you for me, there are as many gifts and blessing in my days now them hardships. The warmth of others touches me daily.
You now know that this is a cancer that has few real winners and it dramatically changes all our lives. It has changed yours. You can handle this and you can do this. You will find the inner strength, we all do. Come here often and ask for help...we all do. It is important to us all. In the beginning you will read and learn, but soon you will give back from what have learned not only about EC, but about yourself and how you deal with this.
Most of us will die much sooner then we imagined, but each day now our lives are much richer and more filled with joy then had this not happened to us.
He will need you more then can imagine. And you will need and true friends and family. Be open and sharing with the medical side and the emotional side, but require care.
My God be with you in your struggle, and may you find your inner strength.
Keith
age 67 Boston
Stage IV0 -
Melanie,
I can feel your
Melanie,
I can feel your pain form reading this post. I didn't reply at first because my situation seemed so different than you. My dad was 70 when he was diagnosed last year 8/09(but very healthy & an active volunteer fire fighter)---very different than having your husband diagnosed. But then read you 2nd post. I am a physical therapist and when my dad was even having trouble swallowing my research started. This site & the folks here were a great resource as well as many other sites. But, I think as health care providers and having both the "scientific" and "caring" backgrounds--those worlds collide and I found it very difficult to get my footing so to speak. I can say that nothing has shaken me deeper than this experience.
Then...I read that you live in East NC. I also read William's posts and agree with going to the best place that you can. I also agree that the less invasive - the better, usually. But my parents live in Swansboro, NC and (long story) finally realized that they NEEDED to go to a much bigger place than they were thinking of when he was first diagnosed. I had tried to convince them and they didn't believe me. It took a thoughtful young doctor's honesty to do that (an angel I think
). Anyway, they traveled the 3 hours for the initial appts, eventually chemo/radiation clinical trial, surgery, follow up chemo at home and periodic check ups. He had his surgery 12/7/09 and is actually doing very well. He is is very thin but has a lot of energy. My mom asked the surgeon at the last appt when he'll gain weight and knowing my dad , he said "when he parks himself in a recliner and watches some TV!" Anyway---He did not have the pure MIE. But I have also seen studies that have mixed results on the MIE (I believe mostly with older folks though because of the increased time it takes to perform and less ability to visualize the full abdominal cavity. I am no doctor, but I would have pushed my dad to go to Pittsburgh if I could have. They just were not up to it for so many reasons. But the care that they recieved from day one was top notch. I would love to go into all the details, but woudln't be able to stop.
I just wanted you to know that he did not have a "huge" incision. He had a number of small cuts for the scopes and one 4" in his abdomen. Like I said I did alot of research before all this and I notice that Duke did a number of things slightly different (one example was his diet after surgery & now). But I (thinking maybe I knew it all?) didn't believe that they could be doing it right bc Pittsburgh did it differently. But I just need to say that it went very well for them and if you can't get to another state-I wanted you to know that I (albeit one person) feel that you would be in good hands if you went to Duke. I think William will not agree, but I do think that people taken completely from anything familiar and very far from home (like my parents would be if they went to NYC or Pittsburgh) have other issues making it harder for them to cope & heal from major treatment & surgeries.
Melanie, your husband is scared too--the guys just deal with it differently--deep down. I would cry when he's not around as much as you can, and just talk in "chunks" as possible. Not to try to tackle everything at once. We will all be here---many have been through this---
If you ever want to talk more in-depth you can also send a private csn message and I can give you an email or phone #.
Kim0 -
Hello again to everyone.K_ann1015 said:Melanie, We are wondering how you & your husband are?
Melanie, We are wondering how you & your husband are?
Hello again to everyone. Thanks so much for all of your replies and support. So much has happened. I don't have time to get into all of it tonight so I will hit the highlights. They did a repeat egd when the pet scan and the first egd did not seem to coincide as well as they should have. The second egd determined that the tumor started in the proximal portion of the stomach and grew into the distal portion of the esophagus. The ultrasound showed that the tumor had invaded all four layers of the esophagus. There is still no organ involvement.
We are being treated at Leo Jenkins by Dr. Walker and we are very happy and satisfied with him, the facility, and the results we are getting. He has started his 3rd round of chemo today. The latest ct showed that the lymph nodes were significantly smaller and that the tumor has necrosis in it. Dr Walker models his treatment after sloan kettering. We have just returned from New York where we obtained our second opinion. We were told that the treatment Jon is receiving is the exact treatment they would have started. They made further recommendations to Dr. Walker, should this chemo being done now stop being effective.
Jon has had no ill effects from the chemo. He loses weight but puts it back on rather quickly. His appetite is good and he has no trouble swallowing, except with dry foods.
We were in the hospital all during Christmas. He had several secondary things to happen. He bacame short of breath and ct showed a saddle pe..he was admitted, anticoagulated and sent home(after 5 days). A few days later he felt dizzy, fell and was taken to the e.d where he was found to be in afib..(complication from p.e.) started on lopressor another hospital stay of a few days..and sent home in sinus rhythm. then he developed an asymmetrical chest wall and was found to have bleeding under his pectoral muscle ( from the lovenox) and yet another hospital stay. he then had a Ivc filter placed to help prevent futher p.e's. Also restarted back on his lovenox. Needless to say that took a toll on both of us. But, we have had no other problems, things seem to have settled down.
He continues to work and is in good spirits. The oncologist at sloan kettering was very optimistic as he saw the results of pet scan and ct. He said we may not need surgery but this is something that we will deal with more when the time comes. We have a Cardiothoracic surgeon on board already, Dr. Jon Moran, and will discuss this more with him when we get to that point.
I know there are probably things I have not hit upon so feel free to ask and I will check back tomorrow.
Again, thanks so much to you all and know that your compassion means so much to me.
Melanie0 -
This comment has been removed by the ModeratorMelanieL said:Hello again to everyone.
Hello again to everyone. Thanks so much for all of your replies and support. So much has happened. I don't have time to get into all of it tonight so I will hit the highlights. They did a repeat egd when the pet scan and the first egd did not seem to coincide as well as they should have. The second egd determined that the tumor started in the proximal portion of the stomach and grew into the distal portion of the esophagus. The ultrasound showed that the tumor had invaded all four layers of the esophagus. There is still no organ involvement.
We are being treated at Leo Jenkins by Dr. Walker and we are very happy and satisfied with him, the facility, and the results we are getting. He has started his 3rd round of chemo today. The latest ct showed that the lymph nodes were significantly smaller and that the tumor has necrosis in it. Dr Walker models his treatment after sloan kettering. We have just returned from New York where we obtained our second opinion. We were told that the treatment Jon is receiving is the exact treatment they would have started. They made further recommendations to Dr. Walker, should this chemo being done now stop being effective.
Jon has had no ill effects from the chemo. He loses weight but puts it back on rather quickly. His appetite is good and he has no trouble swallowing, except with dry foods.
We were in the hospital all during Christmas. He had several secondary things to happen. He bacame short of breath and ct showed a saddle pe..he was admitted, anticoagulated and sent home(after 5 days). A few days later he felt dizzy, fell and was taken to the e.d where he was found to be in afib..(complication from p.e.) started on lopressor another hospital stay of a few days..and sent home in sinus rhythm. then he developed an asymmetrical chest wall and was found to have bleeding under his pectoral muscle ( from the lovenox) and yet another hospital stay. he then had a Ivc filter placed to help prevent futher p.e's. Also restarted back on his lovenox. Needless to say that took a toll on both of us. But, we have had no other problems, things seem to have settled down.
He continues to work and is in good spirits. The oncologist at sloan kettering was very optimistic as he saw the results of pet scan and ct. He said we may not need surgery but this is something that we will deal with more when the time comes. We have a Cardiothoracic surgeon on board already, Dr. Jon Moran, and will discuss this more with him when we get to that point.
I know there are probably things I have not hit upon so feel free to ask and I will check back tomorrow.
Again, thanks so much to you all and know that your compassion means so much to me.
Melanie0 -
This comment has been removed by the ModeratorMelanieL said:Hello again to everyone.
Hello again to everyone. Thanks so much for all of your replies and support. So much has happened. I don't have time to get into all of it tonight so I will hit the highlights. They did a repeat egd when the pet scan and the first egd did not seem to coincide as well as they should have. The second egd determined that the tumor started in the proximal portion of the stomach and grew into the distal portion of the esophagus. The ultrasound showed that the tumor had invaded all four layers of the esophagus. There is still no organ involvement.
We are being treated at Leo Jenkins by Dr. Walker and we are very happy and satisfied with him, the facility, and the results we are getting. He has started his 3rd round of chemo today. The latest ct showed that the lymph nodes were significantly smaller and that the tumor has necrosis in it. Dr Walker models his treatment after sloan kettering. We have just returned from New York where we obtained our second opinion. We were told that the treatment Jon is receiving is the exact treatment they would have started. They made further recommendations to Dr. Walker, should this chemo being done now stop being effective.
Jon has had no ill effects from the chemo. He loses weight but puts it back on rather quickly. His appetite is good and he has no trouble swallowing, except with dry foods.
We were in the hospital all during Christmas. He had several secondary things to happen. He bacame short of breath and ct showed a saddle pe..he was admitted, anticoagulated and sent home(after 5 days). A few days later he felt dizzy, fell and was taken to the e.d where he was found to be in afib..(complication from p.e.) started on lopressor another hospital stay of a few days..and sent home in sinus rhythm. then he developed an asymmetrical chest wall and was found to have bleeding under his pectoral muscle ( from the lovenox) and yet another hospital stay. he then had a Ivc filter placed to help prevent futher p.e's. Also restarted back on his lovenox. Needless to say that took a toll on both of us. But, we have had no other problems, things seem to have settled down.
He continues to work and is in good spirits. The oncologist at sloan kettering was very optimistic as he saw the results of pet scan and ct. He said we may not need surgery but this is something that we will deal with more when the time comes. We have a Cardiothoracic surgeon on board already, Dr. Jon Moran, and will discuss this more with him when we get to that point.
I know there are probably things I have not hit upon so feel free to ask and I will check back tomorrow.
Again, thanks so much to you all and know that your compassion means so much to me.
Melanie0 -
Melaniel,
I don't post very
Melaniel,
I don't post very often but after reading your message I wanted to respond to give you hope. I felt the same way you did a little over a year ago. I could not breathe, the pain, not knowing what to do.
Janurary 14th,2010 my husband was diagnose with Stage 3 esophagas cancer, after 3 different chemo drugs and 33 radiation treatments driving 150 miles to get each day, he had surgery April 19th, 2010. The next day he had respitory failure and was in a coma for 8 days, May 5th he was released to go home, and now is back to working 2 jobs, riding his motorcycle, and cooking dinner at times.
We have been together for 21 years, we have 5 kids with the last going off to college next year. We always joked that after the kids left we would have to decide if we like each other or not. We have definitly reconnected and I cherish every day I have with him, he just went in for his second CT scan and is CANCER FREE. Although I can not promise the same, I can offer hope and encouragement. I never thought life would be this close to normal again.
The one thing I suggest to people that are going through chemo/radiation is Super Advanced Whey Protien 2 scoops mixed in a milkshake 2 times a day, my husband lost only 14lbs in (which he didn't have much to lose)during his chemo. He also had more energy and missed only about 2 1/2 months of work.
My thought and prayers are with you,
Cari0 -
May not need surgery??MelanieL said:Hello again to everyone.
Hello again to everyone. Thanks so much for all of your replies and support. So much has happened. I don't have time to get into all of it tonight so I will hit the highlights. They did a repeat egd when the pet scan and the first egd did not seem to coincide as well as they should have. The second egd determined that the tumor started in the proximal portion of the stomach and grew into the distal portion of the esophagus. The ultrasound showed that the tumor had invaded all four layers of the esophagus. There is still no organ involvement.
We are being treated at Leo Jenkins by Dr. Walker and we are very happy and satisfied with him, the facility, and the results we are getting. He has started his 3rd round of chemo today. The latest ct showed that the lymph nodes were significantly smaller and that the tumor has necrosis in it. Dr Walker models his treatment after sloan kettering. We have just returned from New York where we obtained our second opinion. We were told that the treatment Jon is receiving is the exact treatment they would have started. They made further recommendations to Dr. Walker, should this chemo being done now stop being effective.
Jon has had no ill effects from the chemo. He loses weight but puts it back on rather quickly. His appetite is good and he has no trouble swallowing, except with dry foods.
We were in the hospital all during Christmas. He had several secondary things to happen. He bacame short of breath and ct showed a saddle pe..he was admitted, anticoagulated and sent home(after 5 days). A few days later he felt dizzy, fell and was taken to the e.d where he was found to be in afib..(complication from p.e.) started on lopressor another hospital stay of a few days..and sent home in sinus rhythm. then he developed an asymmetrical chest wall and was found to have bleeding under his pectoral muscle ( from the lovenox) and yet another hospital stay. he then had a Ivc filter placed to help prevent futher p.e's. Also restarted back on his lovenox. Needless to say that took a toll on both of us. But, we have had no other problems, things seem to have settled down.
He continues to work and is in good spirits. The oncologist at sloan kettering was very optimistic as he saw the results of pet scan and ct. He said we may not need surgery but this is something that we will deal with more when the time comes. We have a Cardiothoracic surgeon on board already, Dr. Jon Moran, and will discuss this more with him when we get to that point.
I know there are probably things I have not hit upon so feel free to ask and I will check back tomorrow.
Again, thanks so much to you all and know that your compassion means so much to me.
Melanie
I am glad you are getting aggressive treatment. My husband chose to stay with a nearby private cancer clinic supported by a much larger general clinic and he received excellent care. He has had his six month post op PET scan and there is no evidence of disease. During treatment, he had hospitalizations due to dehydration, needed a feeding tube (much prefer over a stent) and assorted problems. PET scan after chemo/radiation showed no signs of cancer in the esophagus. He had the Ivor-Lewis esophageactomy in April 2010. Developed afib following surgery (which is not that rare due to all the cutting around in the chest close to the heart). All that went away. Of note, the biopsy of the removed esophagus showed that cancer cells were still present under the scar tissue from the therapy/radiation. Our oncologist flatly stated, "THAT'S THE REASON WE DO THE SURGERY!" The IL is quite a surgery but my 70 years old husband was in great health except overweight (no risk factors for EC)and with a lot of support from his medical team and me, he's doing great. Only missed time from his practice when he was in the hospital. A little green/gray looking at the time and slow moving but he kept going. The other day, a lady at our church said, "Bill, you look 20 years younger. I wouldn't want to have cancer, but you sure look good." He's some 75 pounds lighter. His energy drops suddenly from time to time. Still has discomfort eating when he doesn't do it right. But, we are so humble he has no evidence of disease. I believe he was IIB T 0 M 0. If he can withstand the surgery and it is appropriate, go for it. There are some posts on here where after the clear PET scan following chemo/radiation, surgery was not chosen. Hopefully, they will post here and let you know how their treatment worked out. Once past the devastation (I took it much worse than my husband of 45 years did), gear up for the fight. The Board will be your support team. They have sure helped us. Prayers for you in this battle. Mary0 -
Agree with othersMelanieL said:Hello again to everyone.
Hello again to everyone. Thanks so much for all of your replies and support. So much has happened. I don't have time to get into all of it tonight so I will hit the highlights. They did a repeat egd when the pet scan and the first egd did not seem to coincide as well as they should have. The second egd determined that the tumor started in the proximal portion of the stomach and grew into the distal portion of the esophagus. The ultrasound showed that the tumor had invaded all four layers of the esophagus. There is still no organ involvement.
We are being treated at Leo Jenkins by Dr. Walker and we are very happy and satisfied with him, the facility, and the results we are getting. He has started his 3rd round of chemo today. The latest ct showed that the lymph nodes were significantly smaller and that the tumor has necrosis in it. Dr Walker models his treatment after sloan kettering. We have just returned from New York where we obtained our second opinion. We were told that the treatment Jon is receiving is the exact treatment they would have started. They made further recommendations to Dr. Walker, should this chemo being done now stop being effective.
Jon has had no ill effects from the chemo. He loses weight but puts it back on rather quickly. His appetite is good and he has no trouble swallowing, except with dry foods.
We were in the hospital all during Christmas. He had several secondary things to happen. He bacame short of breath and ct showed a saddle pe..he was admitted, anticoagulated and sent home(after 5 days). A few days later he felt dizzy, fell and was taken to the e.d where he was found to be in afib..(complication from p.e.) started on lopressor another hospital stay of a few days..and sent home in sinus rhythm. then he developed an asymmetrical chest wall and was found to have bleeding under his pectoral muscle ( from the lovenox) and yet another hospital stay. he then had a Ivc filter placed to help prevent futher p.e's. Also restarted back on his lovenox. Needless to say that took a toll on both of us. But, we have had no other problems, things seem to have settled down.
He continues to work and is in good spirits. The oncologist at sloan kettering was very optimistic as he saw the results of pet scan and ct. He said we may not need surgery but this is something that we will deal with more when the time comes. We have a Cardiothoracic surgeon on board already, Dr. Jon Moran, and will discuss this more with him when we get to that point.
I know there are probably things I have not hit upon so feel free to ask and I will check back tomorrow.
Again, thanks so much to you all and know that your compassion means so much to me.
Melanie
I have to agree with the others about the surgery. It is very suspicious that the docs are suggesting he would not need it. My husband (T3 N1 M0) has been reacting very well to the chemo treatment and his tumor has shrunk significantly. Nonetheless, even if he continues to show good progress during the remainder of chemo treatment and radiation, he would still have to have a surgery. He has been treated at Sloan, and our onc said that ALL Stage 3 patients undergo surgery.0 -
thank you for your postoregon said:Melaniel,
I don't post very
Melaniel,
I don't post very often but after reading your message I wanted to respond to give you hope. I felt the same way you did a little over a year ago. I could not breathe, the pain, not knowing what to do.
Janurary 14th,2010 my husband was diagnose with Stage 3 esophagas cancer, after 3 different chemo drugs and 33 radiation treatments driving 150 miles to get each day, he had surgery April 19th, 2010. The next day he had respitory failure and was in a coma for 8 days, May 5th he was released to go home, and now is back to working 2 jobs, riding his motorcycle, and cooking dinner at times.
We have been together for 21 years, we have 5 kids with the last going off to college next year. We always joked that after the kids left we would have to decide if we like each other or not. We have definitly reconnected and I cherish every day I have with him, he just went in for his second CT scan and is CANCER FREE. Although I can not promise the same, I can offer hope and encouragement. I never thought life would be this close to normal again.
The one thing I suggest to people that are going through chemo/radiation is Super Advanced Whey Protien 2 scoops mixed in a milkshake 2 times a day, my husband lost only 14lbs in (which he didn't have much to lose)during his chemo. He also had more energy and missed only about 2 1/2 months of work.
My thought and prayers are with you,
Cari
thank you Cari for your post---I hope others see i as well. These kind of posts are needed here as you probably know---going through the feeling of this diagnosis in your family! I wish I could get my dad to buy into the whey protein---I gave him some (he has always been fit-trim so couldn't afford to loose weight)---but the timing wasn't right. It was during chemo---and he happened to get diarrhea---it was probably due to the antibiotics---but in his head he always thought it was "that stuff Kim gave me"---yes I did explain what it was---it's benefits and that it probably wasn't the source of the problem.... anyway---he still could use it...but --well... :-)
thanks for the positive note
Kim0 -
Cari,oregon said:Melaniel,
I don't post very
Melaniel,
I don't post very often but after reading your message I wanted to respond to give you hope. I felt the same way you did a little over a year ago. I could not breathe, the pain, not knowing what to do.
Janurary 14th,2010 my husband was diagnose with Stage 3 esophagas cancer, after 3 different chemo drugs and 33 radiation treatments driving 150 miles to get each day, he had surgery April 19th, 2010. The next day he had respitory failure and was in a coma for 8 days, May 5th he was released to go home, and now is back to working 2 jobs, riding his motorcycle, and cooking dinner at times.
We have been together for 21 years, we have 5 kids with the last going off to college next year. We always joked that after the kids left we would have to decide if we like each other or not. We have definitly reconnected and I cherish every day I have with him, he just went in for his second CT scan and is CANCER FREE. Although I can not promise the same, I can offer hope and encouragement. I never thought life would be this close to normal again.
The one thing I suggest to people that are going through chemo/radiation is Super Advanced Whey Protien 2 scoops mixed in a milkshake 2 times a day, my husband lost only 14lbs in (which he didn't have much to lose)during his chemo. He also had more energy and missed only about 2 1/2 months of work.
My thought and prayers are with you,
Cari
Thanks for taking time
Cari,
Thanks for taking time out to reply to me. After the initial shock of what was happening, I whipped myself into shape and started researching and reading. I still have moments where I feel an overwhelming sadness and fear and I allow myself that moment but then I get on with the business of living. I will definitely tell my husband about the whey shakes but as of now his appetite is good, his energy is high and his stamina has improved. The only time he has missed work was when he was hospitalized. He continues on and I am in awe of him.
I am so glad to hear that your husband has done so well and I will pray that it continues. The survivor stories I read on here give me hope. Thanks so much.
Melanie0 -
Hi William,unknown said:This comment has been removed by the Moderator
Let me clarify.
Hi William,
Let me clarify. From day one of chemo, Dr. Walker, our oncologist has said the goal was surgery. Chemo, chemo with radiation, then surgery. It has always been his goal for Jon. We have felt very safe and comfortable with Dr. Walker but made a trip to Sloan Kettering for our second opinion as advised. It was the oncologists at Sloan Kettering that said Surgery may not be needed. Not our oncologists. As I said, we already have surgeons on board. Jons case was taken before the board and discussed with a Surgical Oncologists and a thoracic surgeon. They are well aware of the plan for Jon. Jon and I discussed what we were told at Sloan Kettering with our doctors. They are not changing their plan. Surgery is the goal.
I followed a lady on youtube who had esophageal cancer. She was "cured" and her oncologists told her it was not necessary to have surgery. Her surgeon strongly recommended the surgery. She decided to trust her oncologist and didn't have the surgery. Her last few videos on you tube are where she tells of the return of cancer and that it came back in the same place and more aggressive. Just as the surgeon had told her. She was having a lot of complications this time and she never came back to make a video. The assumption is that she died. So... having watched that and listened to you guys, and read a lot, we knew we would go for surgery and was surprised that the oncologists from NY told us that. So, don't worry. When we get to that point we will be having the surgery. And, we asked if the surgeons did MIE and was told yes, but will find out more when we get there.
Jon's cancer started in his stomach so they are treating it as gastric cancer at this point and he is responding well.
As far as furnishing you with documents showing he doesnt need surgery, I can't do that. I have none. Maybe you can write Sloan Kettering and ask them. They are the ones saying this. But, for us, it is a moot point as if we are fortunate enough to get to the surgical point, we will go for it.
Let me say how much it means to me that you and the others take your time and offer advice and compassion, and education. I am very glad you survived to be here for so many. God Bless
MelanieL0 -
Oh and not sure if I haveunknown said:This comment has been removed by the Moderator
Oh and not sure if I have mentioned. Jon has 3 lymph nodes involved. One is retroperitoneal, one is ..well shoot,I've forgotten where one is...and the other is in his neck. The one in his neck has shrunk down so much that it is barely palpable.
We take every crumble of good news and dab some ice cream on it and eat it up..heh.0 -
HelloMelanieL said:Cari,
Thanks for taking time
Cari,
Thanks for taking time out to reply to me. After the initial shock of what was happening, I whipped myself into shape and started researching and reading. I still have moments where I feel an overwhelming sadness and fear and I allow myself that moment but then I get on with the business of living. I will definitely tell my husband about the whey shakes but as of now his appetite is good, his energy is high and his stamina has improved. The only time he has missed work was when he was hospitalized. He continues on and I am in awe of him.
I am so glad to hear that your husband has done so well and I will pray that it continues. The survivor stories I read on here give me hope. Thanks so much.
MelanieHello Melanie. Have not seen any recent posts. just wodering how everything was going
0 -
Melanie hasn't posted anything here since November of 2011!alsnals said:Hello
Hello Melanie. Have not seen any recent posts. just wodering how everything was going
Hello “Alsnals” – Am wondering if you are just reading through past posts on this site, or if you’ve been following Melanie and now realize she hasn’t posted here lately. As a matter of fact she hasn’t posted here in 5 years. We lost touch with her years ago, and since she hasn’t posted since November of 2011, I fear that her husband did not fare well. So if you have a problem in your own family, you might want to address someone who is an active contributor to this particular forum.
By way of explanation, you will note that there were over 35 replies to this particular page. Yet all the replies are not posted.
By way of information, you should know that the “William” that is addressed in many of the posts on this page is my husband, William W. Marshall. We corresponded many times with Melanie, but you will note that none of our replies are on the page. Instead, you will see that the “comment has been removed by the moderator.” In addition to providing extensive research for this site for 10 years from 2003 to 2012, with over 3,000 posts, when two people in particular (one an avowed atheist, and another an agnostic) complained about my comforting some Esophageal Cancer patients with verses from the Bible, it was deemed “so offensive” that ALL of our research was removed from the site by the moderator. For example…all these have mentioned my husband, but sad to say, no one will get to say what information he provided. So I will just number them here.
1. “Hello William and thanks for…
2. Hi Melanie, SO sorry about…
Hi Melanie, - SO sorry about what you and your husband have been thrown into! Of course you are scared and overwhelmed. That's totally normal. I haven't read all of what the other posters have written you, but William is an amazing resource and knows of what he speaks. Heed his advice! He's put in so much time researching and reading about EC, he knows his stuff! You'll probably hear from "baily1459" as well. She is full of knowledge too…
3. WE NEVER EXPECT TO HEAR THE C WORD IN OUR PROFESSION…
I had to PULL UP MY BIG GIRL PANTIES ALOT AND DEAL WITH THINGS I NEVER THOUGHT I WOULD HAVE TO DEAL WITH, it was tough seeing him through this ordeal. I would have not been able to make it through everything without this site, William Marshall lifted my spirits when I thought I could go no more, if I asked for help he was there, he gives awesome advice, but WHEW is he lengthy…
4. Melanie, I echo what…sometimes they are just wrong. So ask the questions, keep asking and don't just take what they say at face value. Good luck and welcome to our family. You will want to check in often. And one last comment as William said we may not always say what you want to hear --- but it will always be said with your best interests at heart…
5. I am just a few weeks ahead of you…
Hi, I am just weeks ahead of you with similar conditions. William will seek you out. You will be warmly surprised with the energy and caring that you will get from him. He is not an expert, he's a patient, just like us. But he is smart and wise and the truth, learned by his own force of will. But he is a fighter and learned a lot, and he seems to have succeeded for a long time.
Many things will change your life, this is sure one. But I can tell you for me, there are as many gifts and blessing in my days now than hardships. The warmth of others touches me daily…”
I also read William's posts and agree with going to the best place that you can. I also agree that the less invasive - the better, usually…"
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Incidentally, many complained about our removal, and they were removed for protesting our removal. However, their postings were left on the site. That is with the exception of "Bailey1459". She complained and was removed as well, although her postings were left on the site. But she said, "Please remove my postings if I am not allowed to be on the site, because someone may read a letter from me and expect me to reply and I will not be able to correspond with them.
This was a heartbreak to us, and resulted in most everyone leaving and forming a private Esophageal Cancer group on Facebook. We are still SAD about it and hurt by it. We have spent years, researching, corresponding with, comforting, visiting and being involved in support groups for Esophageal Cancer, so the real losers are those that could have been going back for several years and reading any number of our posts.
You will note that so many said that we provided extensive, accurate and helpful replies. And to this day, we are doing the same. My husband has now been a survivor of Esophageal Cancer, Stage III (T3N1M0) and is celebrating his 14th year. He had the Ivor Lewis Minimally Invasive Esophagectomy performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center back in May of 2003. My husband, William, is doing well to this very day, and it is a miracle. And the only one I know that performs miracles is God!
But since I was diagnosed with Stage IV Ovarian Cancer and Peritoneal Carcinomatosis in November of 2012, I signed in on my own account. Since then I have been commenting on 3 separate links because I am well aware of the problems that EC patients battle with. I was caregiver to my husband William, and am a Stage IV cancer patient myself. I’m currently undergoing my third session of chemo treatments for this terminal cancer. So the comments are now coming from me on this page. However, I may not always feel like answering, but if I can, I will.
If you will notice, Melanie hasn’t posted here since November of 2011. Sad to say but so often Esophageal Cancer patients lose the battle. Sometimes the caregivers write back and tell us about it, and at other times they just quit posting. I have no idea as to what happened to Melanie. But if you have questions that need addressing, please post them here on a separate topic and hopefully you will find help as well.
Sincerely,
Loretta Marshall, (Wife of William W. Marshall) His diagnosis, EC Stage III, (3N1M0) – pre-op chemo & radiation and MIE on May 17, 2003 by Dr. James D. Luketich @ UPMC
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