newly diagnosed and already finished first chemo

jax568
jax568 Member Posts: 57
in Esophageal Cancer #1
My husband was diagnosed with esophageal cancer. He tumor is 5cm and is a adenocarcinoma. His cancer has metastasize. He is 45 years young.

On 8/22 he began treatment. His treatment includes Docetaxel, Fluorouracil then Cisplatin, given in 3 days to be repeated in 2 weeks. Side effects I don't think have kicked in. But I will say he has gained 2 pounds because he is now able to eat. So, at least the chemo has shrunk the tumor enough that food can pass without pain.

Is anyone going through the same.

Thank you.

Comments

  • fredswilma
    fredswilma Member Posts: 185
    #2
    Hi Jax
    I am so sorry that
    Hi Jax
    I am so sorry that you have found yourself on this site, in saying that this is the best place for you, so many of us have been where you are now, my husband is also 45 years young Stage ivb, he had his first rounds of chemo prior to Christmas, it was tough going but it did give him a couple of months of relative calm at the beginning of this year, when you say the cancer has metastasized, where to if you don't mind me asking,and have you had a second opinion? if he is stage iv then you will already know that surgery is out and the reality is that all that can be done is to slow down the growth and spread of the cancer with Chemo, radiation and or a combination of the two, or to do nothing, there are many on this site going through the same thing, some who have been battling for over a year others whom the cancer has been much more aggresive, ask as many questions of us as you can, you need to get one step ahead of this cancer you need to understand its progression, sometimes our oncologists are not as open as we can be here, we are not doctors however we live with this disease daily and become quite adept at figuring ways around eating discomfort, putting on weight etc. Your are not alone, take one day at a time, vent anytime.
    Ann
  • jax568
    jax568 Member Posts: 57
    #3
    fredswilma said:

    Hi Jax
    I am so sorry that
    Hi Jax
    I am so sorry that you have found yourself on this site, in saying that this is the best place for you, so many of us have been where you are now, my husband is also 45 years young Stage ivb, he had his first rounds of chemo prior to Christmas, it was tough going but it did give him a couple of months of relative calm at the beginning of this year, when you say the cancer has metastasized, where to if you don't mind me asking,and have you had a second opinion? if he is stage iv then you will already know that surgery is out and the reality is that all that can be done is to slow down the growth and spread of the cancer with Chemo, radiation and or a combination of the two, or to do nothing, there are many on this site going through the same thing, some who have been battling for over a year others whom the cancer has been much more aggresive, ask as many questions of us as you can, you need to get one step ahead of this cancer you need to understand its progression, sometimes our oncologists are not as open as we can be here, we are not doctors however we live with this disease daily and become quite adept at figuring ways around eating discomfort, putting on weight etc. Your are not alone, take one day at a time, vent anytime.
    Ann

    Thank you Ann.
    It has gone
    Thank you Ann.

    It has gone to the liver. Doctor says surgery not an option. I am not sure how much my husband understands or even wants to know. He did say he would rather not speak with the doc ever and let me deal with doctor.
    This is all so new, we found out on 8/4. We have two girls ages 11 and 8. Our family was formed through adoption.
    We are going to the 2nd top cancer center, so I can't imagine where we would go from here except to Houston.

    Jackie
  • mruble
    mruble Member Posts: 174
    #4
    Too young
    Hi Jackie -

    I'm so sorry you find yourself here, in the place that none of us would choose to be. My husband was diagnosed IVa at the age of 44 when our kids were 13 and 9. It's wonderful that the chemo has worked so quickly for your hustband and he's now able to eat more comfortable. My husband experienced the same thing and it was such a relief to all of us when he could eat without gagging.

    You'll find wonderful people here with so much good advice.

    Mary
  • chemosmoker
    chemosmoker Member Posts: 501
    #5
    Glad you are here.....sort of....
    Hello Jax,
    It feels SO awkward to 'welcome' people to this world of ours. Kind of like wishing bad luck on someone but not.

    I am glad you found the boards, and I can tell you you are in the right place. I understand your husband NOT wanting to know. I wish I could have stuck my head in the sand when the doctors started telling me what I had. I just can't.
    I am, really relieved to hear that he is having such a positive response to the chemo; that is great news and means a lot. I have heard many stories like this.
    I am 43, stage IVb inoperable, and we also have children. I am very happily married to the woman of my dreams, otherwise rather healthy.
    I am also able to eat just fine and have few problems aside from pain which is being managed very well now.
    I have opted not to do any chemo, not even palliative.
    I am in a minority here but VERY confident in my decision.
    Please also know that I have read story after story here and elsewhere of people just like your husband, with mets to the liver, who had such a positive response to chemo and/or radiation, that they became a candidate for surgery after the treatment and went on to remission or close to it even some with liver involvement that had the surgery to continue to live longer even with the liver mets. That would be between your husband and a surgeon willing to do the surgery despite whatever obstacles there are, but I have read about cases so I mention it here.
    NOT to get your hopes up or give you ANY false hopes as that is not good at all.
    I think your husband is very lucky that he has such an advocate in you, but please also be warned that if HE refuses to deal with HIS doctors about HIS cancer and you make any decisions for HIM, he may later either regret doing or not doing something that HE didn't decide to do, even though right now this is what he seems to want you to do.
    That is my 2 cents worth, for what it's worth. Had to get that out there.
    My wife is my best friend, partner, and my life. We have five children from 9 to 22, and so you can imagine that there is a LOT at stake here. She has, however, remained 110% neutral and to this day won't tell me what she wishes I would do. I have NO idea if she thinks I should be doing chemo or not. At first I was upset that my life's partner would not advise or help me decide in such a big decision. Now that I have the months of hindsight, I realize what a big gift she has given me in not offering her opinion!
    Every single other person in my life and in my family has made their opinions VERY VERY clear, those that agree and those that disagree especially! So, I am not without "help" in making decisions. I just HAD to learn that these were MY decisions. That is a very hard thing to come to terms with for me. But I did it. And I am very happy with my decisions to date.
    I hope this helps and I hope you will stick around, come back often and post a lot more!
    Please don't disappear and keep keeping us informed as to you husbands progress and results. Sounds great so far!
    God bless you and your family and may peace and calm rule your journey.
    -Eric
  • Unknown
    Unknown
    #6
    chemosmoker said:

    Glad you are here.....sort of....
    Hello Jax,
    It feels SO awkward to 'welcome' people to this world of ours. Kind of like wishing bad luck on someone but not.

    I am glad you found the boards, and I can tell you you are in the right place. I understand your husband NOT wanting to know. I wish I could have stuck my head in the sand when the doctors started telling me what I had. I just can't.
    I am, really relieved to hear that he is having such a positive response to the chemo; that is great news and means a lot. I have heard many stories like this.
    I am 43, stage IVb inoperable, and we also have children. I am very happily married to the woman of my dreams, otherwise rather healthy.
    I am also able to eat just fine and have few problems aside from pain which is being managed very well now.
    I have opted not to do any chemo, not even palliative.
    I am in a minority here but VERY confident in my decision.
    Please also know that I have read story after story here and elsewhere of people just like your husband, with mets to the liver, who had such a positive response to chemo and/or radiation, that they became a candidate for surgery after the treatment and went on to remission or close to it even some with liver involvement that had the surgery to continue to live longer even with the liver mets. That would be between your husband and a surgeon willing to do the surgery despite whatever obstacles there are, but I have read about cases so I mention it here.
    NOT to get your hopes up or give you ANY false hopes as that is not good at all.
    I think your husband is very lucky that he has such an advocate in you, but please also be warned that if HE refuses to deal with HIS doctors about HIS cancer and you make any decisions for HIM, he may later either regret doing or not doing something that HE didn't decide to do, even though right now this is what he seems to want you to do.
    That is my 2 cents worth, for what it's worth. Had to get that out there.
    My wife is my best friend, partner, and my life. We have five children from 9 to 22, and so you can imagine that there is a LOT at stake here. She has, however, remained 110% neutral and to this day won't tell me what she wishes I would do. I have NO idea if she thinks I should be doing chemo or not. At first I was upset that my life's partner would not advise or help me decide in such a big decision. Now that I have the months of hindsight, I realize what a big gift she has given me in not offering her opinion!
    Every single other person in my life and in my family has made their opinions VERY VERY clear, those that agree and those that disagree especially! So, I am not without "help" in making decisions. I just HAD to learn that these were MY decisions. That is a very hard thing to come to terms with for me. But I did it. And I am very happy with my decisions to date.
    I hope this helps and I hope you will stick around, come back often and post a lot more!
    Please don't disappear and keep keeping us informed as to you husbands progress and results. Sounds great so far!
    God bless you and your family and may peace and calm rule your journey.
    -Eric

    This comment has been removed by the Moderator
  • JimboC
    JimboC Member Posts: 264
    #7
    I was diagnosed as stage 3
    I was diagnosed as stage 3 back in February with an 8 cm tumor and began chemo in March. I was 42 when I was diagnosed. I completed 3 rounds of chemo which shrunk the tumor down to one half cm when they removed it in July. I did have cancer in three nodes so I am back on some followup chemo but doing well. Hang tough, you are going to have good and bad days but once you've been diagnosed, even the bad days don't seem so bad. Like you, my wife is my caregiver and she took such good care of me. I sometimes think that the caregivers have it tougher than we patients so I applaud you.

    Since my diagnosis, my wife and I have had some of our best times. We've had some good cries also. It's a tough journey but I honestly think it has made me a better man for taking it. Please don't hesitate to ask if you have any questions and all my best to you and your husband!
  • jax568
    jax568 Member Posts: 57
    #8
    unknown said:

    This comment has been removed by the Moderator

    thank you
    Thank you all for the welcome and sharing your stories. Funny right after I posted that I wasn't sure how aware he was, we had a talk. He basically said that he understands how grave the situation is, but how can he stay positive if he lives in the doom of it all. So, at this point he feels it's 2011 and he feels great today. So, as long as he feels great or even good he is staying positive. Now I need to figure out a way to take his attitude. It's day by day.

    I am sure as time goes on I will have many questions on coping with the chemo. I can't imagine that he will continue to feel this good.

    Here is my first question. How many rounds of chemo does it take before it takes it's toll?

    Thanks again
    Jackie
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator
  • chemosmoker
    chemosmoker Member Posts: 501
    #10
    unknown said:

    This comment has been removed by the Moderator

    THANK YOU!!!
    Sherri,
    Thank you for setting me straight!
    May God bless you and thank you for all of your experience and for sharing it so freely.

    -Eric
  • jax568
    jax568 Member Posts: 57
    #11
    unknown said:

    This comment has been removed by the Moderator

    theraspheres
    I did look it up, as I have never heard of it. I contacted had an online conversation with someone from CancerCenter. I will contact them tomorrow. I also searched the word on Memorial Sloan Kettering's site with no luck.

    Jackie
  • TerryV
    TerryV Member Posts: 887
    #12
    jax568 said:

    theraspheres
    I did look it up, as I have never heard of it. I contacted had an online conversation with someone from CancerCenter. I will contact them tomorrow. I also searched the word on Memorial Sloan Kettering's site with no luck.

    Jackie

    Found this on Google
    Jackie,

    Perhaps this will help you?

    http://www.nordion.com/therasphere/patients_us/faq.asp
  • Wpturner05
    Wpturner05 Member Posts: 114
    #13
    jax568 said:

    theraspheres
    I did look it up, as I have never heard of it. I contacted had an online conversation with someone from CancerCenter. I will contact them tomorrow. I also searched the word on Memorial Sloan Kettering's site with no luck.

    Jackie

    Hi Jackie,
    My husband is 37
    Hi Jackie,

    My husband is 37 - 36 at diagnosis. He just had liver directed radiation (SIR-spheres) the beginning of August. He will have an MRI next Thursday to see if it was effective. I will keep you posted. He only had the right lobe done. They can only do one lobe at a time. He did pretty well. He went into it very healthy after having chemo since last November. He did get tired.
    Memorial Sloan Kettering directed all of my husband's care until they found out he had mets to the liver. They were a phenomenal facility. For a number of reasons, we now rely on our local oncologist to direct his care and we continue to visit MSKCC about every other month on a consultative basis. The oncologist we see there is dr. Ilson. I do not believe that MSKCC does the liver directed radiation. We had it done at a highly respected regional cancer center.
    I look forward to staying in touch with you. Good luck

    Whitney
  • jax568
    jax568 Member Posts: 57
    #14
    Wpturner05 said:

    Hi Jackie,
    My husband is 37
    Hi Jackie,

    My husband is 37 - 36 at diagnosis. He just had liver directed radiation (SIR-spheres) the beginning of August. He will have an MRI next Thursday to see if it was effective. I will keep you posted. He only had the right lobe done. They can only do one lobe at a time. He did pretty well. He went into it very healthy after having chemo since last November. He did get tired.
    Memorial Sloan Kettering directed all of my husband's care until they found out he had mets to the liver. They were a phenomenal facility. For a number of reasons, we now rely on our local oncologist to direct his care and we continue to visit MSKCC about every other month on a consultative basis. The oncologist we see there is dr. Ilson. I do not believe that MSKCC does the liver directed radiation. We had it done at a highly respected regional cancer center.
    I look forward to staying in touch with you. Good luck

    Whitney

    MSKCC
    Whitney,

    My husbands doctor is Dr. Ilson. Please tell me more. No, I looked it up on there site and didn't find that treatment so I don't believe they do it. The Cancer treatment center in PA does it. Do you live in the NYC area?

    Jackie
  • Wpturner05
    Wpturner05 Member Posts: 114
    #15
    jax568 said:

    MSKCC
    Whitney,

    My husbands doctor is Dr. Ilson. Please tell me more. No, I looked it up on there site and didn't find that treatment so I don't believe they do it. The Cancer treatment center in PA does it. Do you live in the NYC area?

    Jackie

    Jackie,
    We live in
    Jackie,

    We live in southeastern PA. We had the SIR spheres done at Lehigh valley hospital in allentown. My husband is now being followed by an oncologist there by yhte name of dr. Nair - THE MOST amazing oncologist. He is with us at least 45 min to an hour every visit and we are there at least once a month, usually more. He calls us back when we call even if he does not get to us until 8 pm, like tonight :). What questions do you have - I will answer them clearly and directly - just ask :). Look forward to hearing from you. If you want, leave em your email and we can do that more privately.

    Whitney
  • Wpturner05
    Wpturner05 Member Posts: 114
    #16
    Wpturner05 said:

    Jackie,
    We live in
    Jackie,

    We live in southeastern PA. We had the SIR spheres done at Lehigh valley hospital in allentown. My husband is now being followed by an oncologist there by yhte name of dr. Nair - THE MOST amazing oncologist. He is with us at least 45 min to an hour every visit and we are there at least once a month, usually more. He calls us back when we call even if he does not get to us until 8 pm, like tonight :). What questions do you have - I will answer them clearly and directly - just ask :). Look forward to hearing from you. If you want, leave em your email and we can do that more privately.

    Whitney

    I just saw that CSN has
    I just saw that CSN has email - we could use that if you want . . .
  • Heeran
    Heeran Member Posts: 171
    #17
    JimboC said:

    I was diagnosed as stage 3
    I was diagnosed as stage 3 back in February with an 8 cm tumor and began chemo in March. I was 42 when I was diagnosed. I completed 3 rounds of chemo which shrunk the tumor down to one half cm when they removed it in July. I did have cancer in three nodes so I am back on some followup chemo but doing well. Hang tough, you are going to have good and bad days but once you've been diagnosed, even the bad days don't seem so bad. Like you, my wife is my caregiver and she took such good care of me. I sometimes think that the caregivers have it tougher than we patients so I applaud you.

    Since my diagnosis, my wife and I have had some of our best times. We've had some good cries also. It's a tough journey but I honestly think it has made me a better man for taking it. Please don't hesitate to ask if you have any questions and all my best to you and your husband!

    Can you have surgery with cancer in nodes
    Hi, my name is Heeran and I'm new to this site. My mom has the squamous cell ec, still need tests for the staging. I thought if the nodes had cancer, surgery was not an option. That it's too late by this time. Am I incorrect? I thought that's what the oncologist said today but maybe I didn't hear correctly.
  • chemosmoker
    chemosmoker Member Posts: 501
    #18
    Heeran said:

    Can you have surgery with cancer in nodes
    Hi, my name is Heeran and I'm new to this site. My mom has the squamous cell ec, still need tests for the staging. I thought if the nodes had cancer, surgery was not an option. That it's too late by this time. Am I incorrect? I thought that's what the oncologist said today but maybe I didn't hear correctly.

    Heeran....Nodes and surgery...
    Heeran,
    If you look on the boards and follow others surgery and stories, or better yet, click on peoples pictures to read their 'about me' pages, you will read allot about surgery and when and if it is an option. Better yet to wait for your staging and test results and you will KNOW what options you have from the posts here and with consult with you doctor.
    As I was corrected by Sherri, no doctors will do any resection surgery if there is mets to liver or other organs, BUT, if the nodes are the only other area, and depending on which nodes, and where, or how regional the spreading is, is the BIG deal here, they may still do surgery. It all depends on WHERE the cancer is found. A major cancer treatment center is a MUST. There are a LOT of great doctors out there. Many are mentioned here often.

    My spreading was at first thought to be only to the local nodes until LNA and PET+CT and it was seen in my peritoneal nodes, surrounding vessels and structures, and surgery was said not to be an option. UNTIL the spreading got to far from the original tumor sight (mine was stomach and esophagus) surgery was still on the table (no pun intended) but I would have to find another thoracic surgeon who would be willing to still do the resection. They ARE out there. My surgeon was NOT willing to do any surgery at that point, when it was found to have spread to outlying nodes, and now that my cancer has spread beyond the nodes (and is raging wild as we speak) it is a mute point.

    We are all hoping and praying for your results to be better than mine.
    God Bless and stay as calm as possible. Breathe. We are here for you.
    -Eric

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