I am new . I need you guys
Comments
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Praying for you and your husband
Hello,
I wish that I had the words or the wisdom to help you. I know that you are feeling despair at the moment, but you are doing the right thing to go for another opinion. There is always a chance, and you have to try and be positive.
I know that if Chemosmoker was posting at this time, he would be able to have some words of wisdom and be able to understand where your husband is coming from when he says to hold off on the chemo for a little while.
Shortly, lots of others will jump in with some help for you I know. They are a loving and caring bunch of people, here. So strong, practical and knowledgeable.
Put your arms around each other and your trust in God.
I hope the second opinion helps you both and I will pray for you.
Hugs and prayers
Marci x0 -
Another Perspectivemardigras said:Praying for you and your husband
Hello,
I wish that I had the words or the wisdom to help you. I know that you are feeling despair at the moment, but you are doing the right thing to go for another opinion. There is always a chance, and you have to try and be positive.
I know that if Chemosmoker was posting at this time, he would be able to have some words of wisdom and be able to understand where your husband is coming from when he says to hold off on the chemo for a little while.
Shortly, lots of others will jump in with some help for you I know. They are a loving and caring bunch of people, here. So strong, practical and knowledgeable.
Put your arms around each other and your trust in God.
I hope the second opinion helps you both and I will pray for you.
Hugs and prayers
Marci x
As your husband considers his options, let me share my chemo experience. I have been at it now 19 months. I know that my experience may not be typical, but I have had a fairly good quality of life doing the chemo. I have had few side effects and the ones that I have experienced have been well controlled with medication. I live alone and have been able to continue to travel between treatments, have maintained my flower garden, kept my house clean and taken care of myself. I do have days when the energy is lower than others but those days I take it easy and slow down a notch. I am now on my 5th chemo drug and my reactions to all of them have been mild. I know that many including those on here have a really bad time with chemo, but that has not been my experience. I wanted to share another perspective. I am stage four with mets to the liver and I know this can't go on forever, but for now the chemo is allowing me to have a good quality of life, has extended my life way beyond initial expectations. The tratments got rid of the initial tumor in my esophagus and I was able to resume eating for 10 months. The esophagus has begun to narrow now so I am back on tube feeding but I am still doing my thing and enjoying the time I have left with my friends and family. I feel good and am in no pain. My weight is steady and in all honesty I have to say, it could be worse. Good luck and much prayer for you as you deal with this major decision. Sam0 -
options for stage ivbmardigras said:Praying for you and your husband
Hello,
I wish that I had the words or the wisdom to help you. I know that you are feeling despair at the moment, but you are doing the right thing to go for another opinion. There is always a chance, and you have to try and be positive.
I know that if Chemosmoker was posting at this time, he would be able to have some words of wisdom and be able to understand where your husband is coming from when he says to hold off on the chemo for a little while.
Shortly, lots of others will jump in with some help for you I know. They are a loving and caring bunch of people, here. So strong, practical and knowledgeable.
Put your arms around each other and your trust in God.
I hope the second opinion helps you both and I will pray for you.
Hugs and prayers
Marci x
Hi, and so glad you found us. You will find so much valuable information and support here. My husband Lee was stage ivb, mets to the liver as well, and of course surgery is not an option.
For many, chemo is wonderful. For others, chemo can make everything so much worse. Remember that the effects of chemo are cumulative, and the more he gets, the more 'good' cells are getting damaged in the process. Of course, you hope it will kill off the cancerous cells, but that's not a guarantee.
From my own viewpoint, watching the effects it had on my husband, it was not worth it. He never recovered from the side effects of chemo (vomiting, fatigue, hair loss, nausea) they just never went away. 5 months after treatment, he was still having these issues. Now, remember, as I said, it's not the same for everyone! Many here have had multiple rounds and are doing very well. Really it boils down to a personal choice, and how your husband is handling the drugs.
As for how much time? Well, no one can answer that one, we were told 6-18 months, and were blessed with about 10. There is no crystal ball, no one knows what will happen from one day to the next.
This disease is so very scary, there are no right and wrong answers. One friend here, who posts as chemosmoker chose not to do any chemo, and has had fantastic quality for months. Others like Lee did chemo and had very little quality life for months, and there are many in between. This is a very difficult decision, but remember, if he choses no chemo, he can always change his mind in the future. He's not necessarily closing that door forever.
please keep us posted, and be well,
Chantal0 -
Welcome
As others have said, you've definately come to the right site for support and invaluable information. What I know about is EC is that it's the second deadliest cancer - second only to pancreatic cancer. I also know that it's growing drastically in the past ten years. According to the American Cancer Society website, it's growing about 400 times faster than any other cancer. In plain words, it's a beast. If your husband is stage IV I would definately get a second opinion before making any treatment decisions. My husband was diagnosed stage IV on July 11, 2011 and had a severe stroke (caused by the blood clots that this cancer can produce) just nine days later. After working his butt off to come back from the stroke, he had 28 radiation treatments and just 3 chemo treatments before he opted for palliative care. I definately agree that quality of life over quantity of life is a good choice. I'm sure Eric and Michelle will chime in shortly with their takes on this too but as Chantal said, a treatment decision is reversible. You're not stuck with chemo if you decide it's not for you. Post often and ask as many questions as you want. Many people on here have a lot of expertise with this cancer. I wish you well in this, the fight of your life.
Hugs to you,
Rita0 -
Welcome
My husband is also Stage IV diagnosed in October of last year. When he was diagnosed his tumor was 20 centimeters long encompassing the entire esophagus and 4 centimeters into his stomach. He has elected to go the chemo route and has had good results considering how involved It was. The chemo shrank the tumor down to the bottom third of the esophagus and he has had a fairly good quality of life. He does have some pain caused by bone metastases and recently was diagnosed with mets to the brain for which he received radiation treatments. If he had not been on chemo I feel sure these thing would have come about only sooner. One of the most important things I want to share with you is how important it is to go to a well known cancer center that treats this type of cancer regularly. There are many types of chemotherapies available for the treatment of this cancer. Those centers that deal with it regularly are more likely to know which therapies or combinations of therapies work best. We were told right from the beginning that his cancer was not operable or curable, but it was manageable for a time. So that is what we have done, managed the cancer. He has been treated at MD Anderson Cancer Center in Houston and we have been pleased with the treatment we have received there.
I hope this information helps you in some small way. Good luck as you start on this journey.
Cheyl
Wife of Rickie, dx EC stage IV, Oct. 2010 with mets to bones.
Brain mets dx Oct. 20110 -
Hi and Welcome
Hi so sorry that you have found yourself here, I just wanted to let you know that my husband was diagnosed in Aug 2010 as stg iv, with mets to the lungs, so not a surgical candidate, we were told to think of his life in terms of months not years so we are very thankful that we have got to 15 months and still going pretty well. Mark did his first line of Chemo from Sept to Dec last year with very few problems, just tired, nauseaus, hair falling out, weight loss, the one thing we did learn was to get on top of pain and nauseau because those things affected Mark's ability to eat and nutrition is really important. This Chemo did shrink his Tumor and kept it in check for a couple of months when the cancer started up again we were offered a second line of Chemo and decided to go with it providing quality of life was not compromised there is little to be gained by extending life for a couple of months if those months are going to be spent in hospitals, I just wanted you to know that everyone reacts differently to Chemo and so each persons decisions must be based on their own reaction, our rule is quality of life, and that determines every decision we make. Even tho Mark is only 45 years I consider him to be one of the lucky ones because he has handled his Chemo so well, tho I don't think anyone with EC is lucky probably a wrong choice of words.
glad you are getting a second opinion and third if needed, being informed is the one thing you have control over, again welcome to our little family, ask any questions no matter how inane there is a wealth of knowledge on this board, and we all get it we understand the pressure and the sorrow, the anger and the despair, yet we also know that in some ways we have been given a gift, everyday is now one to be lived to the fullest and not taken for granted, its a pity that we only learn this when life is threatened.
Ann0 -
Also a Stage 4b
Hello and welcome. My husband was diagnosed as a Stage 4b with mets to lungs. They gave him 3-9 months, and he went 11 months. He did do chemo for a while. As with Eric, my Steve wasn't HER-2 positive, so he wasn't able to have the herceptin which has proven to slow esophageal cancer growth.
Steve's chemo experience was initially very good. He only got side effects at the 4th session. His C/T scan after having 4-5 sessions showed only that the cancer was halted in its progression, no shrinkage--well, maybe a tiny bit. But not enough for him to continue once the chemo started having debilitating effects on his legs, so he stopped and got his quality of life back and enjoyed himself during the most important time of year for a sailor: sailing season.
It affects everyone differently and unfortunately there is no crystal ball to say who does well on chemo and who does not. Wish there were.
Good luck, keep reading and asking questions.
Jo-Ann0 -
Welcome to home base for us...
Welcome. What a horrible way to have to always greet someone new to our little hell on Earth, although I think it is a LOT less HELLISH with each other and this group as a family and for the support.
What's your first name? That helps.
This is SUCH a tough one as everyone has said, chemo effects everyone SO differently.
With ANYTHING else, even foods, most people experience the same effects from things and how they effect the body and systems, but with chemo, as it is a poison, and the goal is to find that kine where you re killing the cancer and not the patient, it is a very very tough line to find, and then some drugs work and some do nothing.
I know it helps a lot if there is the HER2 gene expression test and if Herceptin can be used. I could not as I was negative or neutral.
I chose NOT to do ANY chemo as I was faced with terminal no matter what, as are you. But to be offered a few MONTHS, maybe, more of life at the expense of vomit, fatigue, exhaustion, sores, lack of apatite and so on, and on, as you well know them all by now, it was juts not logical to me. It just wasn't worth the cost.
I have watched SO many here die so much faster from the chemo than the cancer would have EVER killed them, and the docs won't tell you this either, I believe. MY opinion, They want to do what they are trained to do-give you chemo. Not say you don't need anything, and I don't think they are out just for profit-that's ridiculous. I just men their job is to 'sell' chemo'. Isn't it?
They told me 4-6 months to live, and that was WELL over 4-6 months ago. While I DID have a scare just recently, and could go down faster than the twin towers tomorrow and no one can really say, I am SO SO SO grateful that I have basically taken pain meds to control the pain, and lived my life feeling and doing as I would have BEFORE the cancer. THAT is a blessing. My wife and I STILL have our intimacy (yes even despite the opiates) and that is something that would have been IMPOSSIBLE on chemo. THAT was as much an important quality of life issue to me as breathing, as we are only in our 40's. Sex is important in a relationship especially at 40. When you love each other as much as Michelle and I do THAT MATTERS. I know this is personal, but hey this is a place for honesty. That issue was a BIG part of my decision, and STILL is today when they want to try any new drugs, especially if they have ANY sexual side effects. I have worked too hard (no puns here guys and BOY wouldn't Lee love this one!) to let something like that go so easily.
I wish you all the wellness and luck in your decisions and outcomes.
As it was stated by Chantal and others, you can always START chemo any time to a point, but once you START and get the side effects going, you cannot just STOP as you wish like eating, and expect to go back to the way it was before. It doesn't happen. SO choose carefully and really, really look at HOW LONG will you get to live with or without the chemo BEFORE you ever start it.
All the best. We can try to answer any questions you ask, so please keep posting and stay with us!
God Bless
Eric0 -
And another stage IVjojoshort said:Also a Stage 4b
Hello and welcome. My husband was diagnosed as a Stage 4b with mets to lungs. They gave him 3-9 months, and he went 11 months. He did do chemo for a while. As with Eric, my Steve wasn't HER-2 positive, so he wasn't able to have the herceptin which has proven to slow esophageal cancer growth.
Steve's chemo experience was initially very good. He only got side effects at the 4th session. His C/T scan after having 4-5 sessions showed only that the cancer was halted in its progression, no shrinkage--well, maybe a tiny bit. But not enough for him to continue once the chemo started having debilitating effects on his legs, so he stopped and got his quality of life back and enjoyed himself during the most important time of year for a sailor: sailing season.
It affects everyone differently and unfortunately there is no crystal ball to say who does well on chemo and who does not. Wish there were.
Good luck, keep reading and asking questions.
Jo-Ann
Welcome to our EC world. My husband was also diagnosed as stage IV in late June of this year with distant lymph node involvement. Of course, we were devastated and shell shocked. We did not ask about time, believing that no one has that answer. Our oncologist said we would work for the best quality of life for the longest time. My husband really likes and trusts her (as do I) and that is huge. Nevertheless, we got a 2nd opinion and I continually do research and ask questions. So, he just started his 6th round of chemo (Oxaliplatin and Xeloda) today after a 4 week break for a vacation. As everyone has mentioned, chemo is not consistent in how it effects people. Also, there are advances in minimizing side effects. So far, my husband has tolerated it well with fatigue and cold sensitivity being the side effects he has experienced. His CT and PET scan have shown significant improvement. So, if he tolerates this cycle as well as the others, he'll have one more round and then another PET scan and re-evaluate and more choices. So, you can see from this and the other stories, there is a wide range of experiences with EC and chemo. It's mind boggling especially when you're absorbing a whole new world of information, but just take one step, one minute, one day at a time if you can. Please let us know how it is going. We care.
Angie0 -
Eric, I love your honesty.chemosmoker said:Welcome to home base for us...
Welcome. What a horrible way to have to always greet someone new to our little hell on Earth, although I think it is a LOT less HELLISH with each other and this group as a family and for the support.
What's your first name? That helps.
This is SUCH a tough one as everyone has said, chemo effects everyone SO differently.
With ANYTHING else, even foods, most people experience the same effects from things and how they effect the body and systems, but with chemo, as it is a poison, and the goal is to find that kine where you re killing the cancer and not the patient, it is a very very tough line to find, and then some drugs work and some do nothing.
I know it helps a lot if there is the HER2 gene expression test and if Herceptin can be used. I could not as I was negative or neutral.
I chose NOT to do ANY chemo as I was faced with terminal no matter what, as are you. But to be offered a few MONTHS, maybe, more of life at the expense of vomit, fatigue, exhaustion, sores, lack of apatite and so on, and on, as you well know them all by now, it was juts not logical to me. It just wasn't worth the cost.
I have watched SO many here die so much faster from the chemo than the cancer would have EVER killed them, and the docs won't tell you this either, I believe. MY opinion, They want to do what they are trained to do-give you chemo. Not say you don't need anything, and I don't think they are out just for profit-that's ridiculous. I just men their job is to 'sell' chemo'. Isn't it?
They told me 4-6 months to live, and that was WELL over 4-6 months ago. While I DID have a scare just recently, and could go down faster than the twin towers tomorrow and no one can really say, I am SO SO SO grateful that I have basically taken pain meds to control the pain, and lived my life feeling and doing as I would have BEFORE the cancer. THAT is a blessing. My wife and I STILL have our intimacy (yes even despite the opiates) and that is something that would have been IMPOSSIBLE on chemo. THAT was as much an important quality of life issue to me as breathing, as we are only in our 40's. Sex is important in a relationship especially at 40. When you love each other as much as Michelle and I do THAT MATTERS. I know this is personal, but hey this is a place for honesty. That issue was a BIG part of my decision, and STILL is today when they want to try any new drugs, especially if they have ANY sexual side effects. I have worked too hard (no puns here guys and BOY wouldn't Lee love this one!) to let something like that go so easily.
I wish you all the wellness and luck in your decisions and outcomes.
As it was stated by Chantal and others, you can always START chemo any time to a point, but once you START and get the side effects going, you cannot just STOP as you wish like eating, and expect to go back to the way it was before. It doesn't happen. SO choose carefully and really, really look at HOW LONG will you get to live with or without the chemo BEFORE you ever start it.
All the best. We can try to answer any questions you ask, so please keep posting and stay with us!
God Bless
Eric
Eric, I love your honesty.0 -
Your Hub
pealrush hi, My name is Bruce. I was diagnosed with EC, Esophageal this past summer. I have ceased all chemo, made me too sick. I was on radiation, far as I know, radiation is finished as well!
I've yet to have my throat stretched the only thing that get stuck is large pills. The cancer has metathesized to my liver and lymph glands. The Drs, say surgery is not an option.
They have perscribed Oxycoden, Hydrocoden and a Fentanyl patch, 75 MCG/HR for pain. Hospice stops by once per week. They said take more pills if the pain gets unbearable.
They wont give me a time line, when I should die. Per the Chemo Dr., often will not give a time line. If they are wrong the patients relatives get upset if the Dr. is wrong. Different people are affected differently.
Thats all I can remember at this time. Let me know if you have more questions.0 -
I'm new to all of this toolightning 777 said:Your Hub
pealrush hi, My name is Bruce. I was diagnosed with EC, Esophageal this past summer. I have ceased all chemo, made me too sick. I was on radiation, far as I know, radiation is finished as well!
I've yet to have my throat stretched the only thing that get stuck is large pills. The cancer has metathesized to my liver and lymph glands. The Drs, say surgery is not an option.
They have perscribed Oxycoden, Hydrocoden and a Fentanyl patch, 75 MCG/HR for pain. Hospice stops by once per week. They said take more pills if the pain gets unbearable.
They wont give me a time line, when I should die. Per the Chemo Dr., often will not give a time line. If they are wrong the patients relatives get upset if the Dr. is wrong. Different people are affected differently.
Thats all I can remember at this time. Let me know if you have more questions.
I'm new to all of this too so I can't offer any experience. However, I'm happy to offer any support I can to your family.0
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